Sharp Blue: Labyrinthitis comments, page 10

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Hi everyone, Sounds like there is improvement all around. Katie, back to normal, Rhonda better, even Kam is coming along. Kam, I still chuckle when I think of you doing headstands to get the crystals out. But it's good to hear you are feeling so much better. You are very positive and you can see the light at the end of the tunnel. Walking is always hard with Labs, maybe long walks are something you are not ready for yet. Take your time, it will come. To answer your question, I have had this for a year. The first three months were hell, and then gradually I improved over the spring and was probably 90% back to normal by the summer. But for the last month, I seem to be having a setback, caused by what I don't know. Weather maybe, allergies, sinus trouble. I have good and bad days, but I haven't had anything this bad in a year. My other setbacks were much shorter. Am going for balance tests on Monday. Don't know what that will show,if anything. I hear they are not terribly accurate. But my good days are 90%, my bad days, it's like I'm on a boat, dizzy and nauseous. This bad patch has got me down because it seems never ending. I am going to try cutting salt from my diet and see if that will help. I heard it makes a big difference. We shall see.

Cheers everybody Maria


Hi everyone,

Welcome Fritz, hope you recover soon and don't hang about this board for too long like me!

Just to let you know, I still wear ear plugs when I am at the cinema as noise does seem to send me spinning. In the early days it would feel like I was falling off my seat even with the earplugs in but now I can sometimes watch without them! So things will definitely get better for you and it is a case of just waiting this out.

Katie, I am so glad you have recovered. Good for you, you will appreciate life so much more now that you have had this illness. I know I look at people in a different light now and have much more patience with them because you never know what they are suffering or what is going on in their lives! Eat well and keep yourself healthy and you will keep this monster at bay!!!

I have just had a cold and have been having stabbing pains in my right ear. This of course, results in dizziness and balance being off but, I have still managed to get on with stuff. My youngest has been off school for half term this week and I have managed my three days at work, went walking a few miles on Monday, 10 hours shopping (including cinema) on Tuesday (yes you read correctly TEN hours!!!), and another four hours shopping on Wednesday and then after that the weekly food shop. So a very busy week for me and I have got through it. So maybe the extra liquid iron I am taking is helping, we'll just have to wait and see. I am not saying that I'm feeling less dizzy but I should be a lot more dizzy when suffering from a cold and I haven't!!

Maria, where are you from? I have never really had any balance tests as such so let us know how you go. I know what you mean about the good days, the very good days and the bad days, it's like that for me but hopefully you won't suffer as long as me.

Take care

Sandie x


Thanks for all the encouragement everyone. Katie, like you I'm 5'8 and you're right - losing weight on my kind of frame makes me look horrid. Which is why (before all this occurred I weight trained....oh man, I miss the gym!)....i was even attempting to train for a 5K when all this hit. It brings me down when I think about it. Truthfully, the only thing that kept me going was prayer. I decided I was going to just let go and "let God." I felt I had to or else risk losing my sanity.

KAM - I love what u said about how labs will suddenly become as small as a hiccup....and be long forgotten.....I have days where I step out of bed and wonder - will today be the day that this all ends....has my body overcome...has my brain "learned" to compensate? Lately, my sensations feel more like a boat being rocked from side to side and I sometimes get this faint tingling sensation under my feet. I still feel a little heavy at times (it comes and goes) but I have learned - and I think you mentioned it Maria - that lessening your salt intake makes a difference. I find when I eat things w/ a lot of salt - it worsens! Case in point - I had a rather sloppy sandwich the other day (totally out of glutony and depression) that sent me on the high seas! Never again!

I'm also not sure who mentioned it but I'm going to try the Manuka honey - I found a local health food store that carries it. Does it really help in any way? I researched the Net and the reviews say its good for effectively relieving inflammation.....wish u all wellness!

Hugs - T :0)


Hi all: Sandie, nice to hear from you. I took a double take when I read your post TEN HOURS of shopping. Are you into XMas already? You must be feeling way better. Thanks for asking about the balance tests. Well, I had the usual, you know, you follow a red light. Made me a bit dizzy. But the Caloric test was interesting. The hot water made me feel dizzy in both ears, slightly less in the bad ear. But the cold water made me dizzy in the good ear, but hardly dizzy in the bad ear. Which is funny because I have an immediate reaction to temperatures dropping suddenly, but not so much to temperatures rising suddenly. So I think it's a VN problem, because I don't have hearing loss, and nerves are usually affected by cold temperatures. Like my teeth can hurt if it's very cold. Anyway, don't get the results for 10 days, but will start bugging the ENT at the end of this week.The other thing, I sneaked a look at the computer screen, and there were rows and rows of double digit numbers, but right in the middle there was a single digit number. May mean nothing but it looked out of place. Maybe the results will be normal, but I hear the tests are not terribly accurate, and don't pick up everything. Will let you know. I made a point of telling the technician that I had only marginal dizziness in the bad ear with the cold test, and she made a note of it.

Hope the test shows something, otherwise the ENT will write me off as being anxiety-ridden etc. T. I have been trying the no salt-thing, and so far have not noticed any difference. Still fighting something. Sandie, I live in Toronto, so socialized medicine is good in that you have to pay, it tends to be slow, unless it's critical.

Take care Sandie, Kam, T. Katie, everyone, lots of love Maria


T

Alas... I'm afraid I'm not religious. I kept my sanity thanks to Marlboro reds and Shiraz. What ever works for you. Labs is so horrific draw strength from whatever you can :) Yip.. the Manuka honey thing is well worth doing. It has to be UMF(Active 15) or over to have any worthwhile effect, Buy nothing less than 15 or it's just a waste of money. Grate fresh ginger into a mug, add a spoonful of honey and then boiling water (I sound like Mary Poppins) and let it soak into the ginger for a few minutes. I've heard it's also good to have a spoonful before meals - not sure exactly what it does, but it's supposed to aid your insides anyway! It really helped my headaches. At the time I was getting about 6 a week and after a few days I don't even think I had one. Worth a shot.

Hi Maria, Sandie and Kam. Hope you guys are doing well :)HeHe

Lots of love

Katiexxx


Hello all,

I thought I'd check back and see how everyone is doing and give you an update on my Lab. To all those that have recovered or feel better...you have definitely given me the strength, determination and hope I need.

I'm in my 8th week now and unfortunately, it hasn't subsided. I can honestly say I had better days in the beginning than I am having now. It is hard to stay positive but I have made it a point to go out of the house every day without fail...whether it's for a 5-minute walk or an all-day shopping trip. I can't say it helps but staying inside does not help me either. I have another appointment with the ENT doctor mid-December but I am still hopeful that I'll wake up before that date and this nightmare will be over...my only Christmas wish right now.

My symptoms are much the same as the beginning...very odd kind of dizziness (nothing spins or sways)...just a constant feeling of looking out of unsteady imbalanced eyes...tension headaches (fewer than before, thank God), on very few occasions I've had a sharp buzz in my ears but for 2-3 seconds only, aching body, fatigue, going into dazes constantly and finally, I get extremely nauseous in cars.

I have decided to join a gym in the hope of strengthening my muscles to lessen the aching and fatigue. Not quite sure if I'll be able to manage it but I can only try. I'm still out of work as sitting in front of a monitor is a definite no-no.

I caught an awful cold which lasted a good solid week (week 6 of the Lab) which I think might have set me back. The dizziness didn't really get that much worse than it is but it was a nightmare of a week for the fatigue, a severe sore throat and headaches.

Am not taking any meds as I just don't see the point in masking the symptoms. Am taking Vit C supplements along with Echinacea (high strength) pills to strengthen my immune system...I want to try and fight off the chance of another cold.

That's about all for now. I'll keep you all informed of any changes with my Lab and hope that you all wake up soon Lab-free!!!!

Best, El


All,

Thanks for all the positive notes, it really does help knowing I'm not alone with this. I've got another appointment with my ENT doc next Monday which will be just over the 8 week mark. If it goes beyond that I'm going to settle in for the long haul and start trying some of the things you have recommended, thank you.


Hi all: Nice to hear from everybody. Although everyone (even if they are sick, seems to be going on all-day shopping trips). I hate shopping and when I'm unwell, stores make me dizzy. So Sandie and El, I really admire you. When I first came down with this stupid thing a year ago, and I had to go grocery shopping, I had to psych myself up in the car for a few minutes, before I could get the nerve to go. Then I would go in, grab a cart, storm down the aisles, grab things off the shelf,throw them in the cart. make a bee line for the check out, and get the heck out of there as fast as I good. No reading labels for me, it took too much time, and I had to get out. Once I was able to do it in five minutes. Just couldn't stand it. A bit better now, but I'm still not reading labels. El, your symptoms are like mine, I feel as if I have the wrong glasses on (specs as you Brits say), and my eyes hurt. A detached kind of feeling, in addition to just got off the roller coaster type of feeling. But even when I was way better in the spring and summer, that spaced out feeling never completely left. I have a cold now too (for about a month,) and sinus problems and probably allergies, so this patch has been very stressful, and seems endless. But most Labs cases last 8-12 weeks, so yours will probably be gone soon. You are smart to get out every day. But you are still at the virus stage, so take it easy a bit. Don't overdo. Fritz, let us know how you get on with the ENT? I find I learn more from other peoples doctors. I'd be interested to hear what he/she has to say. Katie, will you abandon us, now that you are over this thing? We'd miss you and your sense of humour.

Going to bed, Hugs everybody Maria


Hello all,

After everything I have read on this blog one thing appears to be constant and near enough certain...Ginkgo Biloba helps!

So...I bought some GB pills today...450mg capsules with directions to take one capsule twice a day with water. The sales lady said that it's fine to take the GB with Echinacea High Strength 500mg pills that I am currently taking to boost my immune system but I thought I'd ask for anyone's advice on here as I don't believe anyone anymore who has not suffered from Lab in one way or another.

I'd appreciate any feedback. Also, from time to time I need to take a Stemetil for the nausea...does anyone know if that's okay whilst taking GB and/or Echinacea?

Many thanks to all and let's hope that one day a treatment will be found for Lab! I can't help but think that there is not enough medical research or clinical trials being carried out for a treatment.

Best, El


EVERYONE PLEASE READ HELLO EVERYONE..I USED TO BE ON THIS WEBSITE YEARS AGO ON LIKE PAGE 2 AND 3..THE REASON IM WRITING IN CAPS IS BECAUSE I WOULD LIKE EVERYONE TO SEE THIS...I WAS DIAGNOSED WITH LABS ABOUT 3 YEARS AND 9 MONTHS AGO...I WOKE UP ONE MORNING AND FELT REALLY WEIRD..IT HAPPENED TO ME TWICE B4 THIS BUT IT WENT AWAY AFTER LIKE 10-14 DAYS...THIS 3RD TIME IS BEEN 3 YEARS AND 9 MONTHS OF BEING TIRED FEELING REALLY WEIRD LIKE I WAS LOOKING THROUGH BINOCULORS..PAINS IN MY BODY ETC....I CANT GO SHOPPING IN THE MALL LONG OR I GET A REALLY WEIRD FEELING AND EYES GET ALL MESSED UP AND LOOK ON A COMPUTER MAKES MY EYES ALL WEIRDED OUT ....ITS A TERRIBLE DISEASE IWENT TO A EAR SPECIALIST AND THEY RAN TEST AND TOLD ME MY RIGHT EAR IS SEVERLY DAMAGED.THEY GAVE ME MRI CAT SCANS BLOOD WORK ETC TO MAKE SURE IT WASNT NOTHING ELSE.( I STILL HAVE MY HEARING) IVE REALLY LEARNED TO DEAL WITH IT BUT ITS TERRIBLE AND I PRAY ONE DAY THAT IT WILL GO AWAY. PEOPLE THINK IM CRAZY BUT ME AND THE EAR, NOSE THROAT SPECIALIST KNOW EXACTLY WHAT I DEAL WITH EVERYDAY. 24 HOURS A DAY 7 DAYS A WEEK OF A WEIRD SURREAL LIKE FEELING IN MY EYES AND TIRED. JELLO LIKE LEGS WHEN IM WALKING ETC...I KNOW THE DEAL PEOPLE SO DONT WORRY IT WILL GET BETTER BUT I DONT KNOW IF IT WILL EVER GO AWAY. PLEASE W/B WITH ANY QUESTIONS OR COMMENTS


Hi Chad,

I am so sorry to hear that you are still suffering from this dreaded monster.

I remember you from years ago (you always liked to have a drink or two, if I remember correctly!). I don't know if you remember me but I have also suffered for the last 3 years and 7 months (ish).

I also still have my hearing but suffer the same symptoms as you - shopping can be a nightmare, jello legs, and dizzness still and feeling like the world is moving and I am not, or is it the other way around? I have had three or four serious relapses where I just can't work because I feel like I am falling all the time, but most of the time it is hitty missy. I feel good for hours then it's back. I probably have most days with mild dizziness and minor balance problems but as you say you learn to cope with it. I also have weird feelings in my head which are the most worrying as at times I still think there's something more serious going on in there. I, like you, feel that after all this time it is never going to get better but I live in hope.

Recently, I have found that I have very low ferritin levels and have been researching this a bit mainly on the healthboard link at the top of this page (anaemia board). This is your back up iron reserve and lots of people with the same symptoms as mine have low ferritin. I am actually NOT anaemic which is why it has never been picked up before. Is there a link? I am keeping my fingers crossed that there is. I am trying to get my levels up but that in itself is a long process. I know of one lady who is now recovered from exactly the same stuff as me just by getting her levels up. This is seriously ignored by doctors but maybe it is something as simple as this that is the problem.

Anyway, welcome back Chad. Have you given up the alcohol - lol!

Sandie


Hello all,

Maria, thanks for the advice about taking it easy...I've had no choice but to do so the last 2-3 days. It has been quite bad. My period came this morning so it seems the few days prior to it coming make my symptoms quite a bit worse. I was unable to leave the house on Saturday (yesterday) it was so bad, but I am far better this evening (Sunday), thank God!!! I decided to go grocery shopping today after being stuck indoors yesterday but regretted it halfway through as I became awfully dizzy and nauseous and was close to calling my fiance to come and rescue me!!...but I plucked up the strength and determination to finish my shopping and slowly drive back home. I guess it helps that I'm a very determined person and have an extremely independent and strong character.

I know what you mean about your eyes hurting, Maria, it's like that for me almost everyday. I, too, had sinus problems 2-3 weeks into my Lab but I think that has cleared up now...I can't be sure though due to the zillion symptoms Lab can have. I truly hope your diagnosis of 8-12 weeks will be the case for me. To think that this might be over within the next 4 weeks is enough to bring tears of joy to my eyes but I won't build up my hopes just yet in case that doesn't happen. I started the Ginkgo Biloba on Friday evening...no change or improvement yet but it's only been two days :-) The lady at the Homeopathy store suggested something called Cocculus (I think that's what it's called). Has anyone tried it?

So how long does the virus stage go on for???? If I listened to what doctors had told me I'd be in severe depression now wondering what's wrong with me. Every doctor's diagnosis entailed this all disappearing within a maximum of 6 weeks. No tests have ever been done to prove I have Lab...several doctors just diagnosed me with such based on my symptoms but I definitely agree with them, but that's where their advice/help ended, they're pretty useless after that.

Thank God for this blog is all I can say...it has done wonders for me and has given me hope.

Best, El


Called the doctor after 3 years and 9 months and they are sure i have cochlear prepherial lesion in my right ear. whatever that means....basically inner ear damage to the right ear.


Hi everybody: Sounds like everyone is up and down. Chad, I'm really sorry that you are still having these problems. That surreal, looking through someone else's glasses never left me even when I got way better. But I got used to it and learned to live with it. But it all came back at the end of September and hasn't left since. Have a couple of good days, then it all comes back. Had balance testing done, but won't get the results until Dec. 4. I still have my hearing, so the doc thinks its VN, not labs. I'm very down over this patch, almost 7 weeks. El, the doctors tell everybody it is going to be short. But I think the virus itself goes on for 8-12 weeks. For most people it goes away after that. But for some of us, the nerve has been damaged so it takes much longer. I read somewhere that for VN it's at least 2 years of on-off symptoms. But the percentages are on your side. You have the same symptoms as me, and so many other people. It's nice to know that we are not alone, but heck,at the end of the day, we're still stuck with it. I'm trying to push myself to do things, but who can enjoy anything if you are feeling sick and dizzy and nauseous? My GP thinks the virus caused inflammation in the nerve, and it never completely went away since I still had symptoms, and now it's flaring up again. He doesn't think it's another virus.I'll be glad to get a definite diagnosis. This is very debilitating. I know what you mean about your eyes. This is one of the things they do when they do balance testing. They check to see how fast our eyes react to lights etc. I always feel that my eyes are reacting a split-second behind. And my eyes are always sore, like they are working extra hard.

Sandie, did you ever have balance tests done? What were the results? Chad did you have them? I know there was a difference between my right and left ears, and I get stabbing pains in my left ear, which is telling me there is something going on. Chad, did your thing start with a virus? I find drinking makes me dizzy. So now, have given up drinking, coffee, trying like heck to cut back on salt. El, one more thing, is your stomach unsettled? I find mine is sometimes, though not all the time. Sometimes I wonder what the connection is. Maybe anxiety. Everyone, we are not alone, though sometimes if feels like it. Hugs Maria


Hello all,

Maria, yeap, my stomach is unsettled, but only 4 or 5 times a week and not for more than an hour or so each time (thank God). This is usually in the morning and mid-afternoon...haven't noticed anything in particular that might trigger it but it has never reached the stage where I will vomit (again, thank God)!!!

The doctor who first diagnosed me with Labs told me to stop coffee and alcohol and to keep water out of my ears. That was the only advice I ever received...oh yes, let's not forget 'relax and don't worry'!!!!

I also feel/hear something like a pulse in my right ear on and off. This only lasts a second or two each time.

I have another appointment with an ENT doctor on December 12. Am not very hopeful about this visit as they didn't even diagnose me with Labs when I last visited...instead they told me to see an ophthalmologist, which I did and that was all clear! The ophthalmologist however referred me to see a neuro consultant in January as a process of elimination. This is something I have to say I appreciate because at least they didn't just draw the line...they listened to me explaining my symptoms, told me it sounds like something viral and systemic, but then said they will not rest until they have run all the tests they can, even though they are pretty sure it's not my eyes. They even gave me a letter for my GP advising that more tests should be done to pinpoint the exact cause of this. Of course, my GP shrugged it off saying 'well, we know it's labs from your symptoms so go home and wait it out'.

Anyway, I am at home waiting it out, putting on weight, realising that I am really letting myself go as this feeling of fatigue just keeps me down, however hard I fight it, and just hoping that tomorrow will be the day that I begin to live again.

Keep strong everyone.

Best, El


Hi Maria

I too was diagnosed with VN as my hearing is perfect. This was at the point where the dizziness etc had gone but I was left with a balance problem, i.e. unsteadiness when walking. This was probably about 8 months into the illness and at this point I was coping well and back to work.

Since then I have relapsed a few times but from research done I know this is not actually Labs attacking me again but something else going on at the same time as with the mumps I had! I think you are correct in saying that the ones who have suffered the most damage to their inner ear nerves are the ones who suffer for years, makes sense doesn't it.The more damage done the more dodgy signals are sent to the brain and the less able the brain is able to completely compensate.

All I had at the ENT was the test where they blow air into your ears to measure the pressure, a hearing test, and the one where you put the goggles on in a dark room and watch the red dot on the screen. I have never actually been told there is any damage either way because my tests had pretty normal results, which is true for most peole with this illness as I think the specialists cannot actually pinpoint much with these tests.

I am having a good day today, have just been for a walk BY MYSELF for an hour in the rain. I love the rain and I am proud of myself because I was just walking along the streets near where I live and the traffic usually makes me feel off balance and dizzy and I was OK!

Take care

Sandie xx


Hi El

I went to two different doctors and a nurse before I got my diagnosis. They're quite hopeless! I also thought I was stark-raving mad until about 8 weeks in and I found this website! I'm free of labs now. It took 16 weeks. Again the doctors told me 3 - 6 weeks. What a load of bol***ks. What the medical lot don't seem to appreciate is the anxiety that labs can cause and in my case obsessional thought patterns, nightmares, s**t memory, and that's not to mention the physical symptoms! Hahaha... As for the eye problems if you can't see straight it's really difficult to think straight. I'm pretty sure after 8 weeks or so the virus has gone (maybe sooner) but for whatever reason some of the symptoms remain. Usually because of ear damage and other complications.

In my case there was no damage. So why did it stay? A friend of my family is a nurse with almost 40 years experience and she has seen dozens of cases of labyrinthitis. She told me it can drag on for a very long time if you are not happy! (Not an easy task when you are in depths of h*ll! ) I wish the drs had told me that. But it's probably a bit too hippy sounding for them! They say they deal with facts. But we all know they are just full of S**t and guess work!

Don't worry you'll get there. Try and laugh as much as possible :)

Richard..... Thanks very much for the website. It helped me get well again :)

Cheers Katiexxx

[It's my pleasure, Katie. I'm glad that you're well again. Does that mean we don't get any more funny stories? -Rich]


Hi all: Katie, I had such a laugh when I read your post. The nurse saying it would take longer if you are not happy. Who can be happy with this wretched illness? I guess she means you should keep a positive attitude, and not let the thing take over your life. Of course the doctors would never tell you that. If he had, I would have asked for happy pills! I don't think Docs realize just how debilitating this is, feeling sick, stomach upset, dizzy 24/7, they say don't worry, but they are not living through this hell. If they ever had to live through it, they would be more sympathetic. Sandie, interesting about your balance tests. So what made made them decide you had VN? Symptoms I guess. I'm hoping my caloric tests show something, otherwise I will be written off as a neurotic wreck. (I can hear Katie giggling "well, if the shoe fits...") Honestly Katie, I do hope you won't forget your dizzy and neurotic friends on this site. You always make me laugh. So happy for you that you are cured! Today I went to Walmart. Wow, as bad as last year. Just wanted to get out of there. Came home and walked the dog in the rain, that was fine, and then raked leaves, fine too. Something about the lights and all the people i guess. El, good to hear your doc is sending you to a specialist. Good to get to the bottom of it. I'm having an MRI Nov 28 and seeing ENT on Dec. 4 when I will get all the test results. Can't stand the wait. At the back of my mind, I'm thinking what if it's a brain tumor? Sandie, my symptoms are so similar to yours that I'm pretty sure it's VN that I have. El, do you have problem with your hearing? Funny about the stomach upset, what causes that, I wonder? Is it anxiety? MIne comes and goes too. Weird. everyone, keep positive, be happy! Chad any improvement, Kam, how's it going?

hugs Maria


Hi all,

Katie, thanks for your encouragement...it's great to hear when someone gets over it :-) When you're living it you tend to believe that you'll never be 'well' again! Zak (my fiance) keeps me happy and smiling...I don't know what I'd do without him. It's so important that the person or people next to you don't shrug it off like the doctors do. He admits he cannot begin to imagine how I'm feeling but makes sure I worry for nothing and keeps me smiling as best he can :-) So I think I've got the 'happy' part under control!

Maria, my doc already sent me to the ENT doc 3 weeks into this and he said it was my eyes hahahaha!!! Am going for a follow up appointment in Dec, probably to the same ENT guy, but he cannot imagine what is in store for him when I walk in. I wonder how half if not more of these doctors actually graduated, I really do. You asked about my hearing...well, when I saw the ENT doc 3 weeks into this I had a hearing test done and my hearing was fine in both ears...I don't know about now...but I can't feel a difference.

I think it is anxiety that causes the stomach, Maria. If you're on meds it could also be those, who's to say? Like Katie said, be happy...I stand by that, it makes the world of difference with me.

Best, El


Hi all- This is my first time posting although I have been reading the site for the past several weeks. I am in my sixth week of what seems to be VL. I have been to an ENT twice, and Internists twice and have an appt. with a neurologist. They tell me it is a viral infection which seems very vague to me. Many of you seem like your symptoms are much worse than mine but I was going to see if anyone thought mine sounded like a mild case of VL. My symptoms are a swaying feeling or imbalance, it seems like an equilibrium problem, mild nausea, bouts of extreme weakness where i feel like I may pass out, severe headaches, spinning when i am sleeping, and occassional aching in my ears. I feel bad complaining about my symptoms as I can tell many of you are experiencing worse things and my thoughts are with you. If anyone has any thoughts on my symptoms and if it sounds like a mild case of VL I would appreciate the feedback. I hope you all start feeling better soon!

Laura


Hi all, Katie, excellent news of your full recovery, that is so nice to hear! Hope it continues forever for you!!

Welcome Laura - sorry to hear that you are suffering these awful symptoms but it does sound like you have Labs. I also have the swaying feeling though not so much now and also suffered from mild nausea which is connected to the feelings of imbalance. Not so sure about severe headaches though as I have never suffered from them but I do have strange feelings in my head on a regular basis. You are lucky in that you have been to ENT twice so quickly - it took me 16 weeks to get there! Mind you, as you will have realised from reading the posts, they are not much good! El you are so lucky to have your fiance because it makes the world of difference that you actually have someone who does understand what you are going through and does not think this is 'all in your head'. My husband has been my rock through this(though he drives me mad when I am well, haha). Doctors don't have a clue what we go through as they just don't know us, but be strong and you will get through it!

My week has not been too bad. My daughter came back from Uni last weekend and we went out for lunch. It was to one of those chinese buffet places and it was crammed packed with people and so hot. I felt really weird in there but I managed to stay put! We then did some shopping and I was fine! Maria, you are right it is bright lights and the hustle and bustle of places which really send you spinning.

Take care everyone. Sandie x


HI all: Laura, welcome to the site. Your symptoms are very similar to mine (headaches I don't get so much), but otherwise. How is your hearing? Don't feel bad about complaining, because you have to go somewhere where people can understand how awful you feel. You could have Labs or VN (which involves the nerve). I think Sandie(am I right Sandie?) and I have VN, which apparently takes longer to recover from, but only if the nerve is damaged. In all probability yours will be a 8-12 week job, with the thing just going away.That's what usually happens, the odds are in your favor. Take care at this point. Give yourself time. El, I guess you are really going to give it to the ENT. I don't know, the stomach thing, only happens from time to time. Sometimes, it is completely absent. The past two or three days have been better, I even managed a lunch with a friend, and grocery shopping yesterday didn't make me crazy. Today I went to church as I sing in the choir, and that didn't make me crazy either. El, I guess your friendly ENT will send you balance tests. Interesting to see what he says. I will be happy to get all my results on Dec. 4. I'm almost positive it's VN, but will see what my ENT has to say. Cheers everyone. Maria


Hi all and welcome Laura. Keep posting on the site - it'll be a huge comfort to you (as it's has been for so many of us). I still don't know conclusively what I have but I have an appt w/ a neurologist tomorrow (will keep u all posted!). I've been trying the Cawthorne-Cooksey exercises and they've helped a little bit but my ear still aches w/ that full feeling....along w/ the boat rocking sensation. By the way - does anyone sometimes get this "sinking into the floor" feeling? (What don't we feel huh?) My father suggested maybe swimming....has exercise proven to be valuable for either Labs or VN? Anyone know?

I'm so determined to recover from this that when its ALL OVER - I'm going to run a marathon and then train for a triathon!! I pray for all of you and ask the Universe to continue to bless us!! You have given me so much HOPE! Thank you! :0) T


Hi Maria

Yes, my ENT said VN for me. I think they made this decision because I was left with balance problems. He also said that with VN the nerve outside the inner ear is damaged not inside as with Labs. Not sure how much truth is in that though because I have never heard anyone mention this before. As you can see I do not not trust these ENT people.

A friend of mine who sees the same consultant as mine has had trouble for years with dizziness and balance problems but she has just been diagnosed, after many tests, with some rare disease which affects her joints. Our consultant said 'Oh, maybe that's what's been making you dizzy'. I cannot believe that and it just goes to show that they really don't know what they are dealing with.

I might add that I have not had any real tests which actually point ot anything so I take my diagnosis with a pinch of salt!!!

Maria, good on you that you managed your shopping and the singing, it is great when you actually acheive something 'normal' isn't it?

Take care

Sandie x


Thanks Sandie and Maria for the quick responses. It feels good to have someone who can relate although I wish none of us had to experience this. Maria- I haven't had any trouble with my hearing and the dr thought that was strange that I didn't have that symptom. I am happy though that it is one I didn't experience. I feel as though my head is slowly returning to normal. Originally everything was swaying even when I was just being still and moving made it even worse. Now it seems to be at its worst when I get up too quickly or move suddenly. I am hoping this means I am on my way to recovery. I am still having bad headaches but we will see what happens. I hope you all are feeling better and having a good start to your week.

Laura


Hi Laura

Lots of people do not have trouble with their hearing and that is why the specialist thought it was VN with me as my hearing has always been perfect. Labs and VN have very similar symptoms and most doctors don't even differentiate between the two.

Yes, it does look like you are on your way to recovery and I very much hope that this is so for you! For me, when I was recovering after my first bout, I would have periods where I would feel normal and these peiods would get longer and longer until there would be a few days when I was normal. I just haven't managed to get back to 100% yet!

I went late night shopping last night at a centre which is fully enclosed, i.e. all the shops under one roof. All bright lights and no air! I felt really ill, my balance was really bad for the first couple of hours (I was there for three hours), and I was really dizzy. I was with my youngest daughter (age 11) and she was in one of her moods so she wasn't much use to me! I soooooooo wanted to get out of there but I had to do it to get all my christmas shopping done so I perservered. I am so proud of myself and I am having a 'normal' day today. It is so strange how this thing can hit you or miss you. I have been for the weekly food shop this morning and it went without a hitch. And, I often have no problems shopping at the mall either. I wonder what it is that means that sometimes you just cannot do it?

Take care all

Sandie xx


Hello All,

Last Saturday was 9 weeks for me, symptoms are either getting slightly better or I'm getting used to this crap, probably a combination of both. I had a follow-up with my ENT and he suggested a MRI to look specifically at the vestibular nerve. Results came back negative which I suppose is good news but it would be nice to have a positive diagnosis. The ENT did have me try Lorazapam (.5mg) which is supposed to help the dizziness but doesn't seem to have much affect at that dosage. When I take 2-3 pills 1-1.5 mg) it just knocks me out which helps with the dizziness but not getting anything else done with the exception of laying on the couch.

I did get accepted as a patient at Dr. Epley's clinic in Portland which is pretty tough to do as they only accept a limited number of patients. I'm only an hour away and can fill in for appointment cancellations on short notice so it seems to work well for both of us. I had my first visit to the clinic last week for about 6 hours of testing. Really a great bunch of folks who are very concerned about their patients. I have a follow-up next week so I'm hoping to have a diagnosis and treatment plan. I did start driving again and even jumped on my dirt bike for a short trip around the yard....definately not ready for the track yet :(

Fritz


Ok Rich... Not as good as dead, blow-dried rabbits!

Lady in Prada

During my nine year stint as a chef at the Holiday Inn Glasgow I could have posted at least one story per week. However, there is a fine line between funny and horrific! Not wishing to offend everybody. I've had to be quite selective in my choice :)

The lobby was the preferred seating area for hotel quests as it was close to the bars and restaurants.

In a quiet corner sat two professional women. One of them ordered coffee the other a glass of Coke. The barmaid - whos name now escapes me brought both drinks to their table. Coffee delivered without a hitch. Not so lucky for the Coke. As the barmaid made her way towards the second woman she tripped on the newly laid carpet and well... SPLAT! Threw the entire glass of Coke right over her!

Seriously pissed off woman screams her head off about her 'Prada' suit and who will be paying for the cleaning?! and she 'DEMANDS' to see the manager NOW!!! So, barmaid runs for it.

Two minutes later... In comes 'Cameron G' 24 years old and on his first ever Duty Managers shift.

Armed with replacement drink and memorised apology speech Cameron makes his way to the table. Broad smile and half way through his first line.... SPLAT!!! Seriously angry woman now not only wearing 'Prada' but a SECOND glass of Coke! Cameron, just like the barmaid had tripped on the newly laid carpet and had thrown the other glass of Coke all over her as well!

Anyway, accident or not it was all a bit late for apologies - Did I mention the Prada suit was cream?!

Happy Days :)

Love to you all

Katiexxx

[That made me laugh, and the carpet part reminded me of the incident in work during which an expensive carpet was glued to the floor of a room and only then was it discovered that nobody had remembered to connect the wires in the underfloor junction box... - Rich]


Hi all. Saw the neurologist and he said he believes I have VN. He referred me to another (but really good - and thorough) ENT specialist for a 2nd opinion. He prescribed me w/ a brief regimen - which he wants me to do for at least a month (cuz he wants to see me again for follow-up and to determine if another MRI should be done).....he requested I take B-100 and Lecithin vitamins every day as they are excellent for nerve cell health. He said they will help to regenerate and heal the vestibular nerve.....he also prescribed naproxen to help reduce any localized swelling and inflammation. I'm suppose to take it 3 days on and 3 days off/2x a day w/ lunch and then dinner for a total of 3-4 cycles.......increase my fluid intake (ie juices, water, soups, fruits...etc).....sleep at a 45 degree angle - no lying flat.....and at home do some vestibular exercises (which i already began on my own three weeks ago) plus....of course, get 7-8 hours of sleep (though 6 is the minimum)!

This has been the most useful advice I've received thus far and today was the first day (since starting the regimen (3) days ago) that i walked for a couple of blocks and did not feel any disoriented/imbalanced sensations......truthfully, I kind of felt like myself again but i didn't want to get too excited (i probably would have ran thru the streets screaming like I won a million bucks!).....I'm hopeful but time will tell.....i will definitely keep u updated!!

Hugs to u all and be well!! :0) T


Hello all and welcome Laura...it's funny but I don't feel happy welcoming you because it means you're also suffering this crap, which is something I wish on no one!

I am now in the middle of my 10th week. The last week was the best so far...I wasn't symptom-free but the symptoms weren't as bad...but this morning I woke up out of it and have been sat on the couch all morning in a daze and hardly bothered to move. I have the unsteady imbalance feeling, as always, and have felt more heavy-headed than usual the last couple of evenings.

The good news is that I started working out this week, not in a gym as I wanted, but at home. I follow a dvd called 'walk away the pounds' which doesn't involve a lot of head movement but more on-the-spot leg exercises. I managed to do it Mon, Tue and Wed, unfortunately not today, but I'm hoping to do it tomorrow as well. It has made my legs feel better as they were constantly aching and weren't feeling too great.

Am thinking of returning to work for a few hours a day but not too sure...the good thing is that they are aware of my condition so they would be understanding...maybe in December.

Take care all, El


Hello everyone, so sorry to hear there's so many people going through what I'm going thru...It's such a horrible thing =( I have a quick question for anyone who'd like to answer it..."Is or has anyone ever been on Nexium?" I'm doing a little research on what's been happening to me...I've had vertigo since September 29 of this year and found out that one of Nexium's side effects is vertigo, dizziness, anxiety, depression, and other horrible things...I strongly believe that Nexium is the culprit...I wish I would've never taken this pill!! I feel so angry cause I don't normally take anything not even for headaches and the first time I trusted a doctor into taking something I ruined my body!


Hi all: Welcome Angel. Are you the angel that is going to free us all from this crappy illness? That would be nice. We've tried the doctors, so now we are trying angels! T. Sounds like you did really well with your doctors. Getting a firm diagnosis will be a big load off your shoulders. At least now, when you feel like heck, you can tell yourself"it's only my ear". The advice about Vitamin B-100 and Lecithin is very good. Why can't doctors tell that to all their patients, it can't hurt. I took Naproxen for a back injury once and it seemed to work very well. But again, no one has mentioned this, so I thought it wouldn't work on the vestibular nerve. But Naproxen is an anti-inflammatory, and since there is inflammation of the nerve, it would make sense. But why should the average Doc use his common sense? All they tell you is that you have to live with it. El, how did you make it with your ENT? I know you were due to see him. My bout last year lasted 12 weeks before it started to improve. This year's bout(although not as severe as last year), has lasted 7 weeks, but I have to say that I have been nearly symptom-free for almost a week. I don't even have that funny looking through the wrong glasses feeling. But since we know that this illness is anything but linear, I won't hold my breath.Bought earmuffs, which were very cheap and also nice and tight, warm and cozy. It's important that we protect our ears in this colder weather. Angel what is Nexium? Are you being treated for something? Try going off it and see what happens. If you even cut back, see if that makes a difference. Katie, that story was hillarious. You must be a lot of fun to be around. Everyone, keep doing VRT. hugs, Maria


Hey guys! How is everyone doing? I had a rough weekend on Sat., my symptoms were back in full force but now it feels as if they are almost gone again. This infection is very strange and frustrating. I had seen on here that many of you have had problems with this multiple times and I was just wondering if that is normal. So if I completely get over Labs in the 8-12 week time frame, should I be concerned that it could return later? I am hoping it is just a one time thing but I can see that many of you haven't been that lucky.

I have returned to work and things are going pretty good, I still have a strange sensation in my head of swaying but not near as bad as it was. I am trying to be positive and think that everyday I am getting a little bit better. I hope you all have a great thanksgiving and are feeling better.

Laura


T,

What kind of vestibular exercises does the doc have you doing?

Dr. Epley told me I have definite nerve damage in my left ear as well as a stubborn group of dislodged canoliths are not responding to the normal Epley manuvers, both likely caused by VL.

I'm going to try the vitamins to see if they will help with the nerve damage.

Fritz


Hello all,

Maria, it's great news that you have been symptom-free for a week...you must be ecstatic - I know I would be! My ENT appointment is on December 12 - thanks for asking. All I want is proof that this is Labyrinthitis. What tests should I demand they do in order to verify this?

I am now at the beginning of my 11th week. Today was quite a good day...I worked out for an hour, cleaned my kitchen and went shopping! I am paying the price now I think though...I feel a bit dizzier than usual and my eyes hurt more than usual but no matter, I am grateful that I am not worse...as I have been in the past.

Stay strong everyone!

Best, El


Maria - I hear you! What he prescribed seemed too common-sensical but it did make sense. I was also surprised when he recommended vitamins....most docs would prefer to give u meds. I also saw the ENT he referred (for the 2nd opinion) and this guy said (and I quote):"I see patients w/ this condition all the time and the reality is that it takes time but it will go away." He said its just spontaneous....meaning - I could wake up tomorrow, or a week or maybe even a month from now and it'll be gone. Just like that! POOF! - like puff the magic dragon! (LOL and Go Figure!) I still admit I need to work on my diet because I realized when my ear aches, its usually when I eat poorly (and then a slight ringing in my ear happens). I found when I eat healthy or something that is rich in antioxidants or has a high anti-inflammatory property (like walnuts, almonds, or pomegranates)....I feel better.

But just so u know - the regimen (so far) is working and I am feeling better. It's baby steps but I feel the changes.

Fritz - the doctor mentioned doing the VRT but didn't say which exercises specifically. I told him I was on a waiting list to receive the therapy (which by the way I finally got called for!!) In the meantime, I do the Cawthorne-Cooksey exercises. These involve - while sitting or standing - moving the eyes (slowly but then gradually more rapidly) from side to side, up/down, diagonally....moving the head from side to side w/ eyes closed, walking slowly (again w/ eyes closed) back and forth or standing on one leg w/ eyes open and closed (this has been my toughest exercise)......there's a variety of them but please know - they will induce the vertigo and/or dizziness - but don't freak it - this is a GOOD THING!! This is suppose to happen. This means the brain is working to help you compensate for whatever amount of vestibular "loss" or dysfunction you've incurred. The brain is re-training itself......and i agree w/ Maria - do the VRT because the human body is a miraculous machine and I find when I discipline myself w/ the exercises (and u can do them whenever/wherever) - I feel much better the next day.

Have a wonderful Thanksgiving everyone and again....we will all get there!! :0) T


Hi all: nice to hear from everyone. Laura, you seem better. For most people the thing completely clears up, so hopefully yours is on the way out. Maybe you will have a symptom-free Xmas. El, I will be thinking of you Dec. 12. Ask for balance testing, they pour water in your ear and make you dizzy, but at least if it comes back positive, then you probably have an inner ear problem. although the test is not that sensitive, and only picks up a significant problem. But it's worth a try. I had a bit of a setback on Monday, but am better today. This thing just will not go away, I can't believe it. But I have felt better of late, so maybe that's a good sign. Finally got an appointment with a physio for VRT. I think I will probably be doing VRT for the rest of my life. I don't think my ear will ever forget. my brain isn't too good at remembering either! T. you sound like you are taking care of yourself too. My chiro told me to cut out salt when possible, so now I have the blandest diet. Very boring, but hey I feel better. I do the same VRT you do, but it does seem to help, although don't you find it hurts your eyes? Do you do it more than once a day? Happy thanksgiving to those who live in the USA, we had ours last month. Do the Brits celebrate Thanksgiving? If not, why not? What an ungrateful bunch!!! Hugs everybody Maria


So true Maria!

We are an ungrateful bunch, but the turkeys are grateful even if we're not!

Hope everyone is doing well and love to you all.

Like the carpet story Rich :)

Katiexxx


Hello all, this is my first post here, done a lot of reading of your comments and this page, I am so glad that it exists!

I'll tell you a bit about me:

I'm 28 and live in Melbourne, Australia. I had my first 'attack' in June/July 2008, I can't remember the exact date because it seemed inconsequential at the time. I woke up in the middle of a Sunday night all sweaty and got up to go to the bathroom. I pretty much fell over from dizziness and I felt absolutely terrible. I vomited and I thought I must have had some type of stomach bug. The next day I was dead tired but seemed to recover fine over a few days.

My next attack was a few days after returning from a holiday Sydney in September 2008. I went to work and at about midday started feeling faint - I thought it may have been because I needed to eat lunch. I went and ate lunch then came back to work and started feeling my head spinning - I had to leave work and catch the train home, then my fiancee picked me up from the train station and I threw up in a plastic bag in the car! I again thought I must have some type of stomach bug and went to the doctor who gave me some Pramin for the nausea. I felt extremely tired afterwards but got better over the next few days.

Then it happened again...my fiancee and I travelled to Queensland, Australia for a friend's wedding by plane in early November 2008. About 3 days after returning from the trip I was back at work and it hit me again. This time I started thinking 'this isn't right'.

I went to the doctor and after explaining everything to him he did a few tests on me including the Dix-Hallpike which was negative. The doc referred me to a neurologist (appointment is Feb 2009) and he seems to think I have Viral Labs and I will probably have more episodes.

Last Tuesday I was hit with nausea/dizziness and had to leave work again. I got really upset emotionally and felt extremely tired but I didn't vomit or anything. I went and bought some ginger tablets from the chemist. All week I have had little weird feelings of dizziness, I don't know what it is, it's not major I guess, but I don't feel 'normal'. I've been pretty tired and have heaps of back and neck tension.

I have a history of depression and anxiety and from my research on the net I can see that a positive attitude will go a long way in recovery from whatever this condition is. In saying that I have been crying non stop this weekend and I think I have sunk even lower into my depression and feeling really hopeless. I guess it's compounding my problems, I don't enjoy my job and have low self esteem, etc but that's another issue.

I have no nystagmus and no ringing in the ears and my ears don't feel full so I am a bit at a loss as to what condition I might have but it's obviously something to so with my vestibular system. Could it have something to do with plane travel?? I've always gotten motion sickness and I am going to be travelling on a plane next week to Perth so we'll see!

I'm trying to cut out caffeine and salt too and will try to eat more healthily and see if that makes a difference. There is a specialist vestibular rehabilitation clinic near me that consults and provides rehab which sounds very promising as I have heard that VRT is highly effective which is such good news!!

I am also going to be making an appointment to see a psychologist. For me personally I think it's something I need to do and my fiancee agrees after seeing me in tears quite a few times over the last few months.

I think you guys are so strong and inspiring - thanks heaps for sharing your stories.

Beck xox


Hi folks:

I am from Vancouver, Canada and I have had a few re-occurences of labyrinthitis since I was 22 when I had it for two years after I caught a virus in Northern Ontario (I am now 45). It's always set off by a viral throat and ear infection and when that clears the dizziness remains. It always lasts for at least 4 to 6 months. [I've had five major bouts in my life - one when I lived in Tokyo which wasn't vertigo but both my ears "filled up" and felt stuffed with cotton for two months].

I was diagnosed with a mild form of Meniere's/Hydrops four years ago when I had a six month bout of this with extreme fatigue 4 years ago. Meniere's and labs often go together - it is an increase of fluid in the labyrinth.

My symptoms, which are imbalance (feel like I am walking on a ship deck) along with EXTREME fatigue and pins/needles in arms and sore muscles in legs have recently been made a lot LESS by a wonderful drug called SERC. [I've also had some success with diuretics though prolonged use can cause kidney stones].

With SERC, the fatigue at least is completely gone which is most of the battle. When the vertigo starts to ramp up, I pop half a pill of SERC and it subsides. (I take three half pills a day with meals) I have been working FT as a teacher even with this condition bothering me for the past 3.5 months even under very stressful conditions with 12 hour days at least twice a week.

I have also been able to keep totally active (with a once a week down time) with walks in Vancouver slashing cold rain and cycling on the nice days. Sometimes I feel like I am walking through the shallow end of a pool -on land- but I walk around the 'hood anyway - or I cycle, which is easier because I am sitting. Meeting with friends and playing gigs on my guitar even if I feel dizzy is important. [unlike other folks here I have no problems driving -I can drive for hours- or going on computer - sit down activities are not an issue]. I even go swimming at times - with ear plugs of course, often heads up, in a pool treated with Bromine and Ozone [once you've got labs, swimming isn't going to make it much worse really].

I think being as active as you can is KEY. Even going against the grain and getting out for a walk or a cycle when you feel dizzy; and keep going to work/school is SO important.

The SERC [beta-histamine] can help lesson the fatigue and the spins to the point where one can do things regularly within a week or two.

One HAS to do things to keep the circulation going, the muscle stiffness down, and to help reset the balance centre. [I do stretching and TaiChi moves - never tried the vestibular therapy as I feel I keep active enough]. ALso, if you are active and not dormant then there are huge psychological benefits.

What else is KEY is regular 7 to 8 hour sleeps; cut way down on caffeine (green teas are fine for me), salty junk food, and alcohol. Eat lots of fruit and veggies.

But I have to say, if it is an excess fluid-based labyrinth issue, and you haven't tried the SERC yet, try it, in combination with maintaining regular activity. It has made my most recent bout only an inconvenience rather than an employment-threatening, life-altering condition that it used to be for me.

After three months on SERC I have managed to get the pill intake down to one half pill every other day and I soon hope to be on an as-need basis, eventually back to nothing.

Good luck! [it does go away... slowly]

Stephen Vancouver BC


Hi everyone: Katie, loved your comment about the turkeys being thankful. I bet they are! Beck, welcome to the site. You will have a lot of support here, coupled with humour from Katie. But please don't beat yourself over the head about your anxiety. Try and get your medical stuff checked out first. If you have a vestibular problem (it sounds like you might), then anxiety is part of the package, since your vestibular nerve and your nervous system are wired together. But, go to the doc, ask for balance tests, maybe MRI and see what's up with your ear. You might find that once you have a diagnosis, and you know what it is, you will handle the anxiety better. Now you don't know what is causing this dizziness and you are scared. Of course! Am finally getting test results on Thursday. Lets hope I get some answers, not just "gee we don't know, maybe you shouldn't worry so much!" Will let you guys know, keep your fingers crossed. Sandie, T. Kam (where are you?) hope you are all okay. Hugs Maria


Hello all and welcome to Beck and Stephen!

Maria, good luck with your test results and I hope you get some solid answers...fingers crossed!!! The days aren't passing fast enough for my 2nd ENT doc appointment on Dec. 12. I have decided not to even think about going back to work until the New Year. I realised that the thought of not working was causing me stress, albeit very slight, it was always on my mind and I now feel more relaxed having pushed the thought away.

Am in the middle of my 12th week now and I kind of feel the same so I guess it will not be leaving me within the usual 8-12 week period. No worries though, I still consider myself lucky in that I am able to go shopping most of the time and drive and walk without any serious problem. Have been exercising for an hour most days for a few weeks now and I must say that I can feel quite a difference with the fatigue and aching bones ...exercising really does help if you can handle doing it.

I think that all I have left is the strange imbalanced feeling (you know what I mean, Maria :-)), like disequilibrium, which at its worst can be called dizziness (which is not too often thank God - mainly just the week before my period). I rarely feel nauseous now, haven't had a sharp pain or strange kind of pulsating in my ear for weeks, no tension headaches either and like I said, the exercise is helping with the fatigue. Maybe I am recovering slowly, who's to say? :-) The worst bloody symptom is the one I am left with though!!!

Well, Katie, yours took 16 weeks...so that's my next hope...that within 4 weeks from now I'll be totally recovered :-)

Stay strong all!

Best, El


Hi everyone. SO...I'm not sure if I've hit a setback but despite doing the regimen that the neurologist prescribed - my right ear (which is the affected ear) has been aching so badly. I don't know if 'ache' is the right term becuz the pain is not a throb but more like a tightness and stiffness....but the ear still feels full and now at night, I get a slight ringing in my ears. I believe this might be the cause for why I've been having a hard time falling asleep at night......plus, Maria, you're right...with the cold weather - everything feels so stiff!!

I've decided to stop the naproxen becuz i think i had an allergic reaction to it. That's a guess of course but my hands and feet felt so inflamed shortly after I took one last night....and the last time i experienced a feeling like this is when i took an over the counter drug (one for motion-sickness) and it did the same thing to my hands and feet. It was so bad I think I only got 2 hours of sleep and then ended up getting up to go to work anyway! What I was thinking! OH! Forgive me for the rant everyone but it helps to get it off my chest - I've also been experiencing these passing nerve impulses or mini electrical shocks (i don't know if its due to the cold weather - can it heighten our symptoms?) but its so frustrating! I know maintaining a low-stress level is KEY to managing all this but I cried almost every night this week. Which means I've been feeling pretty low becuz most, if not every day, I'm good about counting my blessings and maintaining a positive attitude. (Thank God!)

But I don't know anymore folks. I'm tired of the doubt and worry rearing its ugly head. I think I'm going to have to go out on faith here and go a more holistic route. The ONLY words I see in my mind are: HEALING & RECOVERY. I want to believe that I just don't have to live with this....and that I will be 110% again! So, I think I'm going to return to the gym...and then look into getting accupressure and seeing a chinese herbalist. BABY STEPS, BABY STEPS! (By the way: I have my first VRT session tomm - will let u know the outcome!) Wish me well.

I love you all!! T :0)


Hi all, and thanks for sharing all your stories. It seems this is a more common (and horrible) complaint than most people realise.

Myself, long story short, I've had VL for just over four weeks now, which arrived on the back of tonsilitis, laryngitis and sinusitis.

My hearing's fine, but I've had no ear pain despite having very inflamed ears with a discharge of pus for a few weeks. Apart from the bouts of room-spinning that I had for the first week but now only come occasionally I'm just stuck with the cloudy-headedness most of the time. Sometimes it will pretty much clear up (or maybe I adjust to it) later in the afternoon / evening, but as soon as I get out of bed every morning, there it is. Makes getting up difficult, but I know I need to to get to whatever point in the day I might start feeling a little better, as soon as possible.

For 'treatment', I'm on Stemetil three times a day, my doctor gave me the Cawson Cooksey exercises to do, and from reading this page I've just been out to buy the Ginkgo Biloba so will see how that helps too.

Something that has helped me, but may not be for everyone, is keeping a diary. At the end of the day I mark the hours with different colours as a record of when I felt 'terrible - confined to bed/woolyheaded but functioning/pretty much clear'. I know it wouldn't be a good thing to dwell or be obsessed with the symptoms unnecessarily, but in the short term it has helped me to try to work out what my 'triggers' are, and spot the times when I feel a bit better -to try to see what might be helping?

Anyway, my empathy to every one of you, because this thing is the most unpleasant yet little known things I've ever had the misfortune to come across.

I feel I'll definitely appreciate good health much more when it returns. Though it doesn't seem like it will ever go away at the moment, it cheers me up to read that some of you have got at least a little bit better.

Best wishes all.

Hang in there, all!


Hi all- Well I am at the end of my 8th week and my head is still cloudy and spinning. I had a really bad day this week and went back to the dr. and they did some ct scans so hopefully I will know something next week. I have taken some advice from this page and started on a low salt/no salt diet and although it is no fun I do think it has made me feel some better. I am trying to be patient and just know that each day is getting a little better but some days it gets hard to be positive. Mel- I agree with you, when good health returns I am going to appreciate it so much more. I just didn't realize how much I took for granted before. I have a neurologist appt. set up for Jan. 12 but I am crossing my fingers that I won't need it by then. I hope everyone is having a good weekend!

Laura


Hi everybody: nice to hear from everyone. Mel welcome to the site. I hope you will find some answers and some support. It's a good idea to keep a diary, I kept one last year when I was at my worst, and it did help. Especially when you look back and see improvement, even if it is very slight. We are all hoping that you get rid of this thing soon, because it really is no fun. El,great to hear from you. Let us know how you make out at the ENT. Hope you get some answers. Finally got a diagnosis this week. CT Scan was normal, but the caloric test was not. It showed some disfunction in the left ear. So the ENT diagnosed Neuronitis, based on the Caloric part of the test. Anyway, he said the nerve was damaged by the virus last year, and it would just take time and VRT. Exactly what the GP has said, and what I was pretty sure I had. Good to know, because not knowing is hell. Anyway, El, if he sends you for balance tests, pay attention to how you feel in your ears. If you reaction is not the same in one ear as it is in the other, it probably means you have a problem. Thing is that test is not that accurate and doesn't always pick up milder cases. Anyway, keep us posted. T. Sorry to hear you are having a setback. Maybe you are getting a cold. I know about the ear pressure and slight noise in the affected ear, also sort of stabbing pains. The electric sparks are in my head mostly, not in the ear. I think it takes nothing at all to get this thing acting up. The specialist told me that the virus remains dormant in the nerve (in my case) and flares up when you are overtired, run down, etc. Kind of makes sense because the symptoms are always the same. But T. you need to get more sleep than 2 hours. It's very hard this illness, T. I cried so much last year, felt so rotten. Lately I'm feeling better, but you know how this thing is. Not really dizzy, even the spaced-out, warped feeling isn't there. It will probably help you to see the VRT specialist. Nice to talk to someone and she will help you and give you stuff to do at home. How long has it been for you T? I think you are right to count your blessings, but it's very hard when you feel so unwell. Keep us posted on how you are doing, and try to get some sleep, although I realize that is easier said than done. hugs everyone Maria


Hi everyone. Hope you are all well and making progress. Thanks for your kind words and encouragement Maria. I've been "battling" this thing since Sept. So it's going on 3 1/2 mths now. I had my 1st VRT session and it went really well. My therapist said visuals work for me. He said, when I walk outside, I should pick a target - anything, stoplight, person's bag, etc - and simply focus on it. He said this will help take my mind off of the physical imbalance and help stimulate the vestibular system to work more intricately w/ the brain (whatever that means). He gave me exercises to do at home and it amazes me how I am now able to detect the direction in which my body has a tendency to pull. (Its on the right)

But the anxiety is a major factor. I went back to the gym and just as u said Stephen - the physical activity does help w/ the muscle/joint pain/stiffness. I feel a lot better (though I may have pushed a little too hard tonight). I intend to continue but at a much slower pace. Maybe I'm just jealous - wanting to be like all the other gym goers who can run and work out hard w/o any fear of dizziness or physical disorientation. You're right Maria - this "thing/condition" is SO HARD! Not to mention that the doctors themselves don't even know a whole lot about it! Even tonight when I was at the gym - and started breaking a good sweat - it was weird but my ear felt like it had fluid in it....like either something was loosening or trying to seep out. I don't know.

But I find I've been isolating myself a lot. In the beginning of all this - I freaked out quite a bit and shut out everyone. I even broke up w/ my boyfriend (not necessarily becuz of it) but becuz I felt so low and almost helpless. I didn't want him to see me so sad. Sometimes I wish I could take it back becuz I miss him and w/ x-mas looming - I feel even more alone. I do reach out to family and friends but its always my natural tendency to recede. I don't like imposing my problems on them. I know they love me but they sometimes find it hard to imagine how I'm feeling when I look "fine" or "okay" on the outside. Which is why I am so grateful for coming across this site.

It also makes double sense when u said the virus is dormant becuz I have had a small lymph node just under my jaw (on the right) since this whole thing began. No matter what I do - it just won't let up. I've tried massaging the area, loading up on echinacea/goldenseal and vitamin c, even eating things that I know traditionally can help rid the body of viruses....but nada. My GP had done a sonogram and the node measured 1.5 cms. It's small but he said there is a lingering infection of some kind.

Anyway - VRT is helping and I will promise to get more sleep.....big hugs all! T


Thank you for the welcome Maria! Sorry to be here though and I hope you're all feeling better soon too!

The diary is definitely helping me. Before I started keeping it, everything just blurred into one mass and I couldn't tell you any of the triggers for bad spells without a lot of guesswork.

Now that I can look back over the two weeks I have kept it, I can see that my 'good hours' are overtaking my 'bad hours' in number, and fairly rapidly, so long may that continue.

The other thing it has helped me do is identify the things that trigger a bad spell and that has been very revealing.

90-95% of the time, my dizzy spells occur when I'm anxious about something - the illenss itself, going back to work part-time, going out to a restaurant etc.

It only takes a phone call telling me I've got a problem at work, and within minutes I can go from 'feeling ok' to 'woolyheaded', and that unpleasant feeling can last for hours. Similarly, when I finish work or resolve a problem, quite often my head will clear of fog fairly soon afterwards.

I would never previously be stressed about these things, but this labyrinthitis has left me anxious about the slightest thing too!

I think it would be way too much of a coincidence for the physical symptoms of labyrinthitis to only flare up when I happen to be worried, so I am starting to treat this thing (the woolyheadedness and full spinny attacks) as symptoms of anxiety, not labs, now.

I figure that because there's no more I can do for the labs apart from what I am doing - taking Stemetil 3 times a day, ginkgo biloba, taking absorbable magnesium, vitamins etc and keeping as physically active as possible - that will just go when it's ready.

I CAN do something about the anxiety, though, I've had experience of panic attacks before I had all this, and went through a cognitive behavioural therapy course for that, which helped me a lot.

From that course, I learned that it's best not to run away from the stuff that makes me anxious. Previously with post-viral labs symptoms, if I was having a minor bad spell at work, I would go home and lie down. Now, if at all able, I'm just hanging in there, getting through it and doing my best to carry on. That enabled me on Friday to complete my first full day at work for six weeks and it boosted my confidence no end.

I realise not everyone can do that though, and certainly not those who are at the worst stages of labs, but at the stage I'm at now, I'm just trying to break the cycle of 'worrying about labs > leading to anxiety > causing symptoms of labs > leading to worrying about labs'.

It feels like a vicious circle, so to help me break it by relaxing about it, I'm back on betablockers that my GP prescribed for me in the beginning, also herbal relaxation stuff (Kalms, Rescue Remedy)and am looking for a head masseur. I know from past experience that that is excellent for relaxation. Will let you know if it does any good!

So that's my plan for the immediate future (forgive me for rambling, all! it really helps to spill it all out to people who know what you're going through) but I wondered if anybody else felt that anxiety played any part in their bad spells?

It was a bit of an epiphany for me to realise it, but now I actually feel differently about the whole thing. If that resonates with any of you too, it's just something to think about, that's all.

Good luck everyone.


Hello all,

Well, I had my ENT follow-up appointment today and it was pathetic and a total waste of my time and energy.

Basically, I was told... 'if it doesn't go in the next 3 months, come back to us to run some tests'. That would make it 6 months since it began. Of course, I insisted on a test just to say, yeap, there is some nerve damage, or it's inflamed, or whatever, but no, I was expecting too much. Instead, I was made to walk a straight line and stand with my arms out and eyes closed...THAT IS IT!!!

The advice was 'be as active as possible'. The doctors I have had to deal with have been the equivalent of an ice-cube, so cold and with no compassion whatsoever and today, this doctor was looking at me as though I was wasting his bloody time. Oh yes, he kindly said he will send me for VRT if it doesn't go within the next 3 months.

It's been a bad week for my Labs and this visit has made me feel so much worse. Anyway, I am so severely pissed off right now I just needed to let it out.

Hugs to all,

Best, El


Hi everyone, I'm a newbie. I had my first attack of labs about 6 years ago. I was prescribed Stemetil and antibiotics, and it cleared up within a few days. Then nothing until October this year when I was on holiday in Madeira. I'm not sure what sparked it, but I woke up the morning after a whale watching trip feeling nauseous and the room was spinning.

My portuguese is awful, and the Dr spoke little English. He prescribed me Betaserc, and gave me some really strong injections that knocked me out for the rest of the day, but which worked to clear the worst of the symptoms, and I felt mostly normal the next day, and indeed for the next couple of weeks, although a little "foggy".

Then, two weeks after, back in England, I had another attack. Betaserc didn't really touch it, so back to my GP I went, and she prescribed Stemetil. Again, less than 24 hours later, my symptoms had more or less disappeared, and this time the worst of the fogginess also seemed to abate.

It has been 7 weeks since that attack, and this morning I woke up with the tell-tale lurch and spinning sensation. My partner went to A&E and picked up Stemetil from the on-call Dr, and now I'm just waiting to see. I *think* this attack was precipitated by a nasty viral respiratory infection that I have just recovered from.

I waffle - anyway, that's the history. I don't seem to be suffering the same sort of intensity as some of you (I read right back, and feel like I know some of you, like Anna for example, particularly well...) but I wondered if anyone had experienced these short, sharp attacks as it were? Is this all part of the same attack and is it going into remission? Symptoms are spinning, feeling like I might lurch towards the floor, mild nausea and headache.

I'm hopeful tomorrow will be a much better day, but I will be seeing my GP on Monday and I anticipate a referral to ENT as this will be the third occasion in less than three months that I have had this. Any advice would be gratefully recieved. I can totally empathise with people who talk about the panic - the fear is one of the worst things about this, and the feeling of helplessness and not knowing when it will strike again.

Thanks and here's to healthy, non-spinny days for all Caseex


Hi all,

Maria, sorry I haven't been around much lately, I have been so busy with christmas looming on the horizon!

I'm still dizzy and off balance a lot of the time, some days are really terrible but I am staying exactly where I should be when it is happening wheter it's at work or shopping etc! So that maybe a good sign.

To whoever left the comment on 9 december, you are so right, anxiety does play a large part in this and although I would say that I don't suffer anxiety as such, I do think that worrying about how you are going to be in a certain situation does actually make the dizzies come on strong. I am always better close to hometime on a work day. Strange isn't it?

El - I laughed at your post although it really is not funny. I would take a guess that you are based in the UK because I could have written your post myself. The ent are absolutely USELESS in this country and an absolute waste of time. I had the same tests as you (almost nothing) and felt exactly the same as you do.

Take care everyone

Sandie


Hello Sandie,

Yeap, I am based in the UK (London to be precise). And to think... I was told all that crap at the Royal National Throat Nose and Ear Hospital no less!!!! Anyway, yes, they are useless!

I am kind of past the anger that I had on Friday now and am back to trying to make myself better without the doctors and their textbook advice.

I am taking a bunch of herbal stuff now, trying to stay anxiety-free and hoping for the best. I went shopping today for 3.5 hours, didn't feel better for it but will continue to stay as active as possible in the hope that it will help.

Hugs to all, El


Thanks for the welcome to the site. :)

I had another attack last Friday - with nausea and vomiting - and this was the night before I got on a plane! Weird, I don't know what's going on. Going to my GP tomorrow to try and get a referral for ENT doc. He referred me to a neurologist last time but I'm not sure why, it seems ENT is the way to go for a proper diagnosis.

I hope you're all doing well and staying strong.

Not long til Xmas now, can't wait!

:)


Hey all!

I received my ct scans back from the dr. and everything was normal which is good but I am beginning to think I may have damage to the nerve. How do you know for sure if the nerve is damaged?. I have had a few good days followed by a few bad ones. Whenever I am having good days I think for sure that I am about to beat this thing and then here comes another bad day. It seems like all my other symptoms are gone for the most part except for the dizziness. Sometimes I think it may never go away. Sorry for being so negative but it has been a tough day.

I know I need to be thankful that I don't have it any worse, hopefully with a little more time and patience it will begin to fade. Hope you all are feeling better:)

Laura


Hi El

Thought you were UK!!! I'm up in the north east of england! I visit the ENT at the Freeman Hospital in Newcastle which is actually a brilliant hospital for heart patients etc, you have probably heard of it. But ENT - forget it!.

It actually took 12 weeks for me to get an appointment there and for what? Three minutes with a consultant! Brilliant. In all the times I have visited I have never been asked how I actually feel with this thing! And I see one of the top consultants there. Waste of time, for me anyway!

So, I think it is best to treat yourself. Go for the healthy lifestyle. Lots of exercise, walking is brilliant. And eat good food. Don't overdo it, but challenge it as much as you can.

Most importantly, don't worry too much about it. It is not life threatening and will make you a better person! I am so much more tolerant of other people now, not that I was impatient anyway, I am a nice person (!!), but you do look at people in a different light as you never know what is going on in their lives. You know this because you actually look so normal to others but you are going through absolute hell.

Take care and keep fighting.

Sandie xx


Hi all - I'm new to this site. I got a diagnosis of VL 4 weeks ago. I just had another full on vertigo attack this morning. I did have an MRI and they said it was clear. But I've developed severe anxiety and I'm terrified it's something more serious. I have pain in my nose and behind my left eye. I have that foggy feeling - almost disconnected. I'm really a wreck - plus 7 months pregnant. Any help would be appreciated - thanks all


Hi everybody; Laura, have you had balance tests? They would be an indication of nerve damage in your inner ear. If you haven't had them, see if your doc can arrange for you to have them. You would feel a lot better if you knew what the problem was. The ups and downs you describe are typical of an inner ear disorder. Do you have hearing problems? I'd get it checked out. Does your bad ear hurt sometimes? Your symptoms sound like mine. Mine have almost completely disappeared after 14 months, although it's only been two weeks. But yesterday, I felt normal for the first time in over a year. Right now I have a cold and it's not making me dizzy. I am prepared for a non-linear recovery, and since I know what it is, maybe it won't be so bad. Shopping at a big store is still a problem. But the rest is ok. Sandie, so nice to hear from you. Sorry to hear you are dizzy. This illness is beastly. One day at a time guys, Maria


Hi - I tried to post the other day and it didn't come out. They think I have VL or some form of it. It terrifies me beyond belief. I got my first attack 4 weeks ago and had another yesterday. I keep thinking I'm not gonna make it. It helps reading this website - so I don't feel so alone. Kim


Hey Maria! I am glad you have had a few good days! That is awesome and hopefully it will continue. I can't believe you have been dealing with it for 14 months, you have to be a strong woman:) I haven't had any balance tests done, but I did have some hearing tests done. My hearing was normal and I have never had a problem with my hearing since this whole thing began. Neither one of my ears really hurt, sometimes I will have a shooting pain in them and it's not always the same one. It only lasts for a few seconds and then it goes away. The main thing is just the dizziness, with me the room doesn't spin around me but I feel like I am moving. Some days it feels like somebody just took my head and shook it like a snow globe. I have heard some of you talk about uncontrolled eye movements, does anyone else have them when they close their eyes? I don't feel like I have it when my eyes are open but when I close them it feels like they go wild. I am trying to be patient, I am nearing the end of my 10th week so hopefully a little more time will prove I am getting better. I am a newlywed, I got sick the day my husband and I returned from our honeymoon:( I just really want to be able to fully enjoy my new life!

Laura


Hello all.

I hope everyone is feeling better, even if it is only slightly better.

Sandie, thanks for your encouragement. Unfortunately, the last couple of weeks have been awful...I have felt much like I did when the dizzies first hit me so I have been a bit down. Haven't hung up the gloves yet though!

Maria, I can only imagine how happy you must be feeling, the normal feeling must be magic!! I envy youuuuuu!

Kim, read comment number 55...from Sandie to me...the last paragraph. You may have been diagnosed with VL but it is NOT life-threatening...do everything you can to try and stay as relaxed as possible...I can't imagine how it must feel to have this monster and be 7 months pregnant but I believe that a pregnant woman has more inner strength than anybody or anything so don't give in to it.

So, somebody told me something interesting today...that it is possible that I might have MAV (Migraine Associated Vertigo)!?!?! Symptoms include everything I have had and still have and not necessarily vertigo in all its glory or migraines either...apparently, just dizziness or disequilibrium and headaches are signs of MAV.

All day I have been suffering with a tension headache that I just cannot get rid of no matter what I do. It'll probably be gone by tomorrow but it has drained and exhausted me today, messed up my vision more than usual and brought on severe fatigue.

The advice I can find for easing the symptoms for MAV is much the same as for Labs except for the migraine pills that are available, which I wouldn't take.

Has anybody had any experience with MAV or know anything about it? It has sparked my curiosity but at the same time, I can't stop thinking about it, which is tiring me in a strange kind of way.

Hugs to all, El


Hi everyone: El, good to hear form you. I don't know if you have been diagnosed with anything. Did you have balance tests, apparently they are a good determiner of inner ear problems. I think if you are not sure you should try and pursue this. Also, the doc put me on Betahistine last year when I first came down with VN, and although I took a very small amount, it seemed to help a bit.The Doc said no way would that do anything for MAV, Sometimes I get headaches too, and my neck hurts, and there is family history of Migraine. If you don't want to go on migraine meds, try eliminating the triggers in the book "Heal your Headache" (chocolate, red wine, coffee, and more). Are you having sinus trouble? That gives me headaches, but when the sinus thing clears up, then I don't have them. I'm feeling better, but yesterday overdid it with doing a huge cleanup, then going to a big mall, with lots of lights. So last night I felt the dizzies rear up their ugly head, today okay except my neck hurts. Kim. the pain in the nose and behind the eye I get all the time. Again, I think it's related to sinuses, but could also be MAV, but it you don't have headaches it might be. The anxiety, we can all relate to. Remember that your vestibular system is wired to your nervous system, so any disorder in one is going to affect the other. My anxiety was terrible last year, I thought I was seriously ill with something. Try and see a specialist if you can, if not push for some answers with your GP. That disconnect feeling is typical of an inner ear disorder. Even when I felt much better in the spring and summer, that feeling never quite left. Now it's better, but yesterday and today I feel it a bit, but not bad, but my sinuses are acting up. We're all with you Kim. Laura; gosh that snow dome being violently shaken. I know that feeling well, also a feeling of electric circuits going through the head. But you mentioned your eyes, the uncontrolled eye movements that you seem to be experiencing are called Nystagmus, and that is one of the first things the ENT will check, because it is a definite indicator of an inner ear problem. In fact when they do vestibular tests, they tape electrodes to your eyes to monitor your eyes movements (both open and closed) while they try to make you dizzy. I don't have it, but the tests still showed dysfunction in the left ear. I don't know if that helps and I am not a doctor, but I do know that the eye movement is an important part of the diagnosis. If you Google Nystagmus, you will see there is tons of info. What a thing to happen on your honeymoon. I wish you all the best in your new married life, this is just a bad patch Laura. Keep telling yourself that, but try to see an ENT if it doesn't go away, which it might anyway. Everyone else, hope you are better. We are expecting a huge snowstorm, so I will be shoveling all day. Hugs everyone, Maria


This website and all of you have really made a huge difference in my life. Thank you so much. I feel for all of you suffering like I am. And it means so much to come here and read everyone's comments etc. I hope to get to a point someday where I'm not so anxious and depressed all the time. xo


Hi I am new to this website came across it last night and cant believe that so many people are suffering. My name is Angela and I am 31 years old. I came down with Labs last Xmas Day being took to hospital as I kept falling over witht the room spinning. I was really ill over the next 4 months could not walk,( marshmallow feet ) pains in my head like it was going to burst, my eyes blurred vision,my mouth constantly hanging open like a goldfish, and feeling like I am a snow globe getting shook about, my ears popping and feeling full of pressure, and basically feeling and looking like some alien had took over my body. After 8 visits to my doctor and 3 visits to the hospital the all said It was Labs and it would go away on its own, well I was off work for about 4 months but I went back and struggled through, for the past 3 months I had been 80% better and have been receiving VRT from the ENT at the hospital, I had been thinking more positive until 2 days ago, it has hit me again big time, like the first time, I cant believe it, just before Xmas, another ruined Xmas! The pains in my head are freaking me out, my eye balls are bulging from my head, I forgot how bad I was, can anyone please tell me if this will pass soon, I cant be ill again, I have no energy, feel sick, my ears, my head, my eyes, my legs. I feel like someone is shaking me like a rattle and it wont stop. I cant stop crying and I really dont think I can deal with it again. Also My Lymph nodes in my groin area are swollen and very sore my stomach looks 5 months pregnant, this happened the first time? its happened again has anyone else had this? My work has me up on dismissal for being off the first time, I cant be off again or they will sack me. Is there anything I can do to help myself please..


Hey Angela I know how you feel believe me. I am terrified all the time. Afraid to fall asleep because I'll wake up again with the spins. I also have the head aches and eye pains. Mine has been 5 weeks - and counting. I cry all the time too. I feel for you from the bottom of my heart. I feel for all the people here. I find myself praying all the time that this will go away. I wish I had advice to give you. I've developed severe anxiety over it. And I'm pregnant due in 6 weeks. I send you and everyone my prayers, and thankfully we have this site to be able to talk about our fears.


Angela

I've just read your post. Oh sweetie that is SO CRAP! Right ok... I think the best advice is to hunt yourself down the best doctor you can find. If you are in the uk it might even be worth paying to go private. Don't let this demon take over your life again. You had nearly nailed it, so you can do it again.

As for your work. What a bunch of ARS****ES. If that's really their attitude it's outrageous! I know we all have to work. I got sick when I was job hunting. So they put me on incapacity benefit for 4 months. I had £60 a week to live off! Horrific. You know... your health is much more important than your job. If they sack you they didn't deserve you in the first place!

Stop beating yourself up too. This is NOT your fault. It's just luck of the draw. Hunt down a decent doctor. Eat loads of fruit, vege, fish, nuts, fresh ginger. Take ginkyo and vit c. And go for head massages. I found that a great help.

You may have caught the flu or some other virus that has triggered this. There is every possibility you will go back to the stage you were at before. A lot of people on this site have had bad colds etc that have caused relapses. So it might be the same for you.

Look whatever happens it's going to be ok. Don't be angry at yourself. You didn't ask for this. Be kind to yourself and never mind those idiots at work. You and your health are much more important than ANY job!

We're all rooting for you!

Katiexxx


Hi all; Gosh Angela. I almost cried when I read your post. I can't agree with Katie more. Get as many tests as you can: MRI, Balance tests. I'm sure you would feel better if you knew what it was. Push for an MRI and ENG test at the very least. You need some answers. This is a relapse of what you had last year. If it was more serious, you wouldn't have gotten 80% better. Your doc is probably right, but insist that you get some tests done. We've all been there, and we're all with you. I relapsed at the end of September after being 90%(more or less, with ups and downs) for 8 months. Last Xmas, sick as a dog, and crying all the time. But the specialist told me that the virus stays dormant in your inner ear (in the nerve in my case) for at least 2 years and can flare up when you get run down or during weather changes etc. If these are the same symptoms, then this is the same thing. Of course you are depressed. This is a b**** of an illness. The ups and downs can literally drive you mad. But try not to blame yourself. And your anxiety is physical not emotional. The vestibular and nervous systems are wired so one affects the other. I swear I have never had so many anxiety attacks in my life. We are all with you Angela. I wish we all lived closer so that we could actually get together. As Katie says, keep to a healthy diet, and try to keep active, at least around the house. Pay attention to what your ear is doing? Are you getting pains in one ear only? Fullness in one ear? If you notice a pattern, you might be able to pinpoint as to what ear it is. I found I got slight stabbing pains and a kind of fluttering in the ear. Also the fullness was always in the one ear. Turns out, that's the ear with the Neuritis, so my intuition was right. Marshmallow feet, God there were times, I could barely walk outside. You just can't describe that feeling to anyone. I'm really sorry to hear about your job. But the anxiety is making it worse. Your health is more important as Katie pointed out. And unfortunately you can't rush this thing. It has its own timeline. Very difficult with that extra pressure on you. Please keep in touch, we're all thinking of you. Kim, you are having a tough time too, and so close to delivery. Have you gotten a diagnosis? The dizziness is so scary. You lose control completely. I have had this for 14 months, but I still have to judge every situation by how dizzy I am. I have been much, much better for the past 3 weeks, but I have lost a lot of confidence and feel I don't want to get overtired in case the thing comes back. Shopping malls are still a problem, and all I want to to is get the heck out of there as soon as I go in. Everything else is getting back to normal. For now. Angela and Kim you need rest. Be good to yourselves. Kim, you will have a lovely baby soon.Angela this will pass. Very unfortunate that it is wrecking another Xmas. We're all in this together. Hugs Maria

5


Hi everyone

Thanks KimD, Kate and Maria for your comments, its great to know I have people who can relate to me and I am not the only person thats living with this. I have an appointment on the 30th Dec to get an MRI/CT scan done. Maria both my ears have fullness and pains in them. My hearing is Mega Sensitive have you guys this problem? I constantly wear ear muffs or a hat to protect them. Katie Yes I live in the UK, Scottish like yourself! Your comment on the bit about my work gave me a laugh, Couldnt have said it better myself. I feel a bit more positive for all your comments and glad I have you guys to talk to now. Does it affect your facial muscles? I can actually feel it coming on and my eyes feel like I have bricks on them and then my mouth opens and then my speech goes all slow and the marshmallow feet return, My partner says I look like a different person, I look like I am drugged or drunk to the point I cant focus. then say if I start to eat or force myself to walk the heavyness lifts and I can see better and the fuzziness disappears and I can talk better, I look and feel spaced out, its terrifying! Its worse at night when I go to bed and my eyeballs are having a party when I am trying to get to sleep, When I wake up its like the worst hangover in the world, just want to throw up as soon as I open my eyes. Should I force myself to walk about, I dont know if I should rest of try be active? Kim here is a big hug. Thanks guys for your support. I don't feel like I am going mad on my own now. xx


Feeling so hopeless. I had my vertigo attack 5 weeks ago - then another one tuesday (I know I've said this already). I'm just so scared all the time that one is coming on again. Like I'll never get over it or I'll feel this horrible forever. They originally said VL - but now BPPV. My dad and uncle have BPPV too. I don't know anymore. I'm so anxious all the time, crying all the time and basically a wreck. I'm so tired of being scared.. I'm sorry to bring everyone down. Just feeling so bad lately. Hugs to all


Angela

The facial twitching around the eyes is called myokmia. I still have it a little. And when your eye balls shake it's nystagmus. I've had that too. It's awful isn't it!? It's like having wasps behind your eyes! But it will go away :) For most of the time I had labs my eyes were uneven. One wide open, one half shut! REALLY ATTRACTIVE! I'm sure most of my town thought I had a serious drink problem! Dodgy eyes and staggering about the place! Hahaha :) Oh yeah, WALK, WALK and WALK some more! Helped me get better faster. It will also keep your muscle strength up.

Kim D

I remember weeks 5 and 6 being blo*dy awful. What Maria says above about the nervous system being wired to the vestibular system is the reason you are so anxious. I felt like my mind had turned in on itself. I had nasty, depressing thought patterns and I was full of self doubt. This is NOT you. It is just what labs etc does ... Tries to totally wreck your head. Don't be scared, it only makes it harder for you. I don't know much about BPPV, the symptoms sound pretty similar to labs. I cried almost every day for 4 months, but I also laughed. I promise it will get easier and you won't always feel this way. You need to do stuff that cheers you up. Even if it's just watching some silly films, buy some cute clothes off the internet. Anything daft and harmless that can occupy your mind. Rather than let it fill with rubbish and turn on you. You have so much to look forward to. So just like Angela. Stop being mean to yourself. And it's going be ok :)

Maria, Sandie, El, Beck, Laura, Casee, T ... How are you girls? Are you all set for Santa!? TRAH LAH LAH LAH LAH LAH LAH LAH LAH

Katiexxx


Hello Katie,

My gosh, you have me in stitches when I read your posts :-) You've got such a great way of writing about Labs...it's excellent!

I have had a bad few weeks...nasty disequilibrium imbalance feeling has become dizziness quite a few times, and I tell you, some nasty headaches which totally exhaust me...I think they are due to congestion in the sinus area, fatigue is back along with nausea.

Week 15 begins tomorrow (Monday) and I can't see any light at the end of the tunnel but will be booking an appointment with my GP asap. I demanded balance tests at the ENT who totally ignored my requests so I am hoping for more success with my GP. I need this officially diagnosed in order to relax my mind.

Other than the above, I am as active as I can be without overdoing it, I drive whenever I am able to as I think it helps and am trying to keep a smile on my face!

I don't know if I'll post before, but if not...Merry Christmas everyone...I swear, given a wish right now...I would choose good health for us all!!!

Stay strong and fight it...try to have as good a Christmas as possible! El xxx


El

I've decided to keep posting on this site for a while. I'm well again so, I want to try and help everyone else. Mine lasted 16 weeks and then 3 months of myokmia. It gets better all the time, but it is slow. YAWN.

If you get a lot of headaches take fresh ginger. It really does help. Are you eating much? Also dehydration could be a factor. I was guilty on both charges. I could go 2/3 days and eat nothing. The weird thing was my mental state was so confused I didn't even notice. You need all the strength you can get to fight this.

The congestion thing is a real bug**r. I would lie in bed at night and feel as if I were drowning.(all anxiety related) Plenty of nasty can't breathe type dreams and so on.

Demand to see everyone and anyone. You might be lucky enough to come across some bright spark who knows a thing or two. The drs etc I saw were CR*P! They knew so little about it. If it had been left to them, I reckon I would have made it to the nut house by now. Self help seems to be the way.

I promise El the light is always there, tunnel or no tunnel. Look in the mirror and remember who you were before this. Learn to believe in yourself again and don't let this ba****d thing take over your life.

You can do it

Hope the spelling isn't too far off the mark. My Mum and I just drank a bottle of sherry:)

Katiexxx


Well, this is the first time I am writing on this site. I found it after the fateful June 10th of this year when, after not even being sick, I came down with room-spinning type vertigo that sent me wretching for 5 hours. I, like many of you went to ER. No help there. Finally, my doctor friend sent me to an ENT doctor. Said it was Meniere's-NOT. I was a hearing-speech major in college. I did not have the symptoms. Finally, at a hearing institute, they determined that I had labs. After balance and caloric testing, they determined that the virus had ravaged 38% of my left ear's vestibular mechanism.

I, too went through an AWFUL 3 months of super-sensitive hearing, vise-like pressure on my head, the marshmallow feeling when I walk, out-of-body feeling when I talk to people. I cried and prayed for 3 hard months. I could not really go anywhere, and I lost 12 lbs. (Yeah!)

Now (and I am sharing this for the sake of especially the new sufferers) I am about 75% normal. I drive and do all the things I used to do. I am not good on doing the physical therapy exercises but I promised my hubby that after Christmas, Id be more faithful in doing them. They really do help to retrain the brain.

Sometimes my vision is like looking through at a home movie where the person did not hold the camera still! But that sensation is going away. People cannot tell that I am sick anymore, and that's good - sometimes. Sometimes it's not good because family expects you to operate at 100% even though you know you feel like crud.

So, keep the faith, my friends, it does get better. This site was a life-saver for me. I have many doctor friends and they all said it would last 4 weeks at the most. HA! So this site really made me realize that I am not going crazy! Thank you


Katie,

I started the fresh ginger yesterday - sliced in hot water with lemon and honey. If you know a better more effective way of taking it, please let me have it.

I am very happy to say that though I see a slight drop in my appetite, I am still eating breakfast, lunch and dinner with small fruit and nut snacks in between but have never been one for drinking water - I drink about 4-5 glasses a day (forcibly), a glass of cranberry/pomegranate juice, a glass of orange/mango smoothie and about 4 teas - my drinking habits are like a ritual! I hope that's enough hydration.

I have an appointment with a neurologist on 2 January 2008 - believe it or not, when I visited an ophthalmologist (under the advice of the ENT!!!!), they actually referred me so it seems they gave more of a damn than anyone else! I will book an appointment with my GP after that and take it from there.

You were right to mention looking in the mirror - I have rarely seen myself in it since this all began...just this shadow of a person who once existed - all I can say is thank God for Zac, my fiance. He is truly amazing and has not once let me forget who I am.

Rita, welcome and thanks for sharing your story. On my really good days I feel 75% too so I shouldn't really complain...only, they are few and far between!

Anyway, I could sit here writing for hours but I have a flat to clean! My brother will be visiting/staying for 2 weeks over Christmas and the New Year so I have quite a bit to do.

Merry Christmas all, El xxx


Hi All

Katie-All of your posts bring a smile to my face and give me encouragement that one day this beast will be gone. I am really glad you have recovered and I am really glad you have decided to continue to post...it is a huge help.

I have started taking lots of vitamins, ginko, lots of water, and anit-histamines for the headaches. Some days I feel I am on my way to recovery and then days like Friday happen. I had to call in to work, I barely moved off my couch all day, dreaded moving my head the lease little bit. Now it is Monday and I feel tons better than on Friday. This is the most frustrating illness I have ever had to deal with. The ups and downs really get me depressed and thinking it will never end. If someone could magically tell me a time frame of when I would be better it would be so much better than having to wonder everyday if it was ever going to go away. Today is starting week 11 and I am just trying to be thankful for all the good things that I do have.

My husband and I opened a few Christmas presents early which cheered my up! Hopefully we can all have an anxiety-free Christmas and new year.

Laura


Happy Holidays everyone and welcome to all the new folks. U couldn't have said it any better El, I wish for a return of health for all of us!! Like some - I don't know if I'm having a setback but my good and bad days are fluctuating so badly. I'm going to see a 3rd(!) ENT in january but who knows if he can tell me anything enlightening! Lately, I've been having this pinching sort of pain in the middle of my head. I feel it when I touch my scalp (right in the upper middle end).....I'm also now feeling those mild electrical shocks again. Both in my feet and fingers. I tried a homeopathic treatment recently called Cocculus Compositum (aka Vertigo Heel) but it didn't help any. I read it helps to relieve - and in some cases - eliminate vertigo-related symptoms. Someone mentioned it in an earlier post that their symptoms involve them moving and not the room. I don't feel the room spinning either - it just feels like I'm moving. I feel like I'm either walking on foam or a badly broken wooden bridge. I swear I feel like a wet noodle! :0) Though my neurologist said I may have VN - no doc has yet to give me a proper diagnosis. One other ENT said I had labyrinthitis. I thought I did because the lymph node under my right jaw has been prominent since i came down w/ this. I also took the advice of someone who posted here a while back (I can't remember who) but they said grape seed extract did wonders for relieving pressure in the ears. Whoever she is - she's right and thank you! It's done wonders for me too! But I still struggle with the physical imbalance, pains and fatigue. I don't know anymore and I'm getting tired of visting doctors who have no real knowledge about what they're talking about! I'm based in the US and so I have to pay endless co-pays. My bills are piling up.

Kim D - BPPV is very treatable and u can recover much quicker from this than labs and VN. There is hope girl! When I mentioned to my VRT therapist 2 wks ago that a lady at my job came down w/ what sounds like BPPV - he said there are specific treatments that can get rid of it. A friend of mine had it too and she recovered as well. If this is ure diagnosis - then u can be treated by having an ENT perform what is called the Epley Manuever. As far as I know - in BPPV - there are calcium crystals located in the semi-circular canals of the ear that can sometimes get stuck or co-aggulate (sp?) causing or creating the vertigo like (that is, the room spinning sensations) we sometimes experience. But this is usually brought on by sudden head movements or turning on one's side when in bed. The purpose of the Epley Manuever is to help loosen up these crystals so they can become free-flowing again. Look it up online and don't lose hope ok. You can get treated for it and you will get better.

We all will. Happy holidays and merry x-mas everyone! Keep those heads up!

Hugs - T :0)


Hi Folks, Katie your posts cheer me up too especially the bit about people thinking your the local drunk, Ha Ha, thats what I think about myself right now, I look like a maniac!! I was at the doctor again today, he gave me a tablet called SERC? (betahistine dihydrochloride) its works by improving blood flow in the inner ear which reduces build up of pressure which causes Vertigo? started taking them today, I dont understand why he never gave me them a year ago when he said there was no medication to help Labs. The only thing I am worried about is that he says I will need to take them Long Term so I dont get a relapse again. My doctor also said I might have this for 2-3 years? Have any you guys had these pills? I have read that the meds interfere with the recovery process is this the case? If they make me feel better I will take them, I so want to be ok for Xmas day, feel terrible that I ruined everyones last year, its my partners birthday on Xmas Day and last year he was in A&E with me! Bummer!!


Hi everyone and welcome to all you newbies!

Katie, glad to see you have made a full recovery. And I hope this ugly thing never darkens your doorstep again.

Me, I am still struggling with this pig of an illness. It was my birthday on Sunday and me and my husband went to a chinese restaurant. As soon as I went in I started to feel awful. I lasted about 10 minutes and we had to come home. Cheapest bill ever, five pounds and 6 pence!! I don't know what happened because I felt fine before we went, but as soon as we arrived I felt dizzy and very irritated. It wasn't particularly full but the music was a little loud and as I still get noise sensitive sometimes I think this may be what kicked it off. Next day I had to go to work and that was a nightmare for the best part of the day.

Today I had to attend a funeral as my uncle died last week and I felt really dizzy in the church so decided not to attend the gathering afterwards because I am not good with loads of people around me.

So, I am now worrying about xmas lunch which is booked at the local carvery - am I going to be OK or not? That's the thing about this thing, you never know when it is going to hit. Got to keep fighting and getting out there and doing stuff though or else it will take over your life.

I hope you all have a very merry christmas and we all have a dizzy free day.

Sandie xx


Hi Sandie,

First of all, Happy Birthday! though I must say I felt for you so much when I read your post :-(

Were the lights dim in the restaurant??? I ask because I recently went to a restaurant with my fiance and was feeling not too bad but as soon as we ordered I started feeling all weird, flushed, dizzy and just wanted to run out of there. I have now realised that this happens in dimly lit places. It's a weird thing but it seems to be the case for me.

My vision feels off because of this anyway so in dimly lit places I feel strained and as though I am struggling to make sense of everything and that in itself kicks everything off for me, especially nausea!

Sorry to hear about your uncle, and so close to Christmas - that's sad :-(

Like you said, 'got to keep fighting and getting out there and doing stuff'...I feel more positive when outside, even if I get the dizzies...I don't have time to think about the condition but as soon as I get home and sit down, I always feel worse as the mind can be awful at times and doesn't let me think of anything else.

Anyway, good luck for Christmas lunch, I'm sure you'll be fine... try not to worry about it before it has happened as it will probably cause it to happen.

Best, El xxx


Sandie - I'm so sorry to hear your uncle passed. I'm praying for us all. I have some questions for everyone - do ure dizzy spells come and go? Are u able to walk for extended periods (as normal w/ good balance) and then feel a dizzy due to either a trigger or after a certain duration? Or is it constant...meaning from the time u wake up to the time u go to bed? And do u experience the room spinning or are u feeling mobile (or dizzy) but the room is NOT spinning?

I ask because I am trying to make sense of my "vertigo".....i know our pains and aches are different but the constant state of dizziness is my cause for concern. I don't get spells of it like some of u nor do I feel the constant neck, back and upper trunk pain I used to - every now and then my head might feel heavy but that's only when I don't eat. In terms of percentages - I'm probably at a 85% capacity. I can go to the gym (work out lightly though) - shop, be in crowds, multi-task and function fine at work and home but the persistent dizziness when I walk is driving me insane! On my awesome days - I experience these very slight instances where I feel like I have my balance back....and oh man is it exhilirating!! But then, literally a minute or two later - it's back to the BS...and it makes me sad all over again. It's like somebody's playing a game behind my back called "I got u!" I try to imagine that those moments are just a taste of what my recovery will be but jeez - this thing sure can "steal" ure joy!

Anyway - just wanted to know if anyone is experiencing the same symptoms I have. Angela - I'm definitely interested to know how the SERC works for u....be well....and keep posting. :0) T


Hi,

Thanks for your lovely comments. Dreading tomorrow but have had quite a good day today and it's really lifted my spirits.

Everything is ready for the big day, just have a pile of ironing to do and that's me done! A woman's work is never done!!

El, the lights were dim in the restaurant but I don't seem to have problems with this. It is more the atmosphere with me, if that makes sense, I just do not like certain places, though at times I can be fine.

When I am feeling real bad, I also feel more comfortable when I'm outside, I think it's the fresh air on my face, makes me feel a bit better. I know when I feel particularly bad at work, I go outside for a while and it seems to help. T - my dizzies have always been inside my head (literally!!!), I have never felt the room spin, it is always me that feels like I am moving or swaying when I am standing still. I just don't seem able to control it. Yesterday at the funeral I felt awful and was hanging onto my son and he said he could feel me swaying.

At first, I had dizziness all day and everyday, though only rarely through the night depending which way my head was. After a few months my balance went haywire and this persisted for a few months then went away. Since then I have had a couple of relapses where I am dizzy and my balance is terribly off. Now after nearly 4 years I have hours and hours where I can be ok, and a couple of days here and there where I am 'off kilter'. Then I can be okay for a couple of weeks and then it's back. Most days I have an hour or so where I really don't feel well at all but it passes. There are lots of triggers for the dizziness which you try and avoid as time goes on. Mine are sunlight in the winter moving between the trees, this makes my balance go off, looking down reading a magazines, sometimes I have to hold it in front of my face! Crowded places and loud music can set me off and I have a terrible aversion to screaming kids!

I don't have any neck pain or facial pain like some people have.

You will find as time goes on your symptoms will get less and less and hopefully for you disappear completely. I am still waiting but I live in hope!

Even though I have had relapses, I have never been as bad as my first episode. I think you actually just get used to feeling like this and it doesn't affect your life so much.

Take care everyone and merry christmas

Sandie xx


HI everyone: Just wanted to wish everyone a Merry Christmas and a Happy AND HEALTHY new year. We're all getting there. But recovery is slow, and we just have to be patient. This year is a huge difference for me compared to last Xmas. Slow but better. Sandie, Katie, El, you have become my friends this year, and I wish for you all that is good. To all the newbies, we are all here for you and hope your recovery will be speedy.

A very big THANK YOU to Rich for allowing us to vent and support each other. Rich, we couldn't do it without you and are very grateful for all the work that you do to keep this site going. A very Merry Xmas to you and to your family from all of us. lots of love Maria


Happy Christmas, lovely dizzy people!


ive have labs for 9 months and its starting to kill me im going to my new girlfriends xmas party with her fam so i can sit quietly in the conner maybe old saint nic will bring me health


Hi Sandie - thanks for answering. I thought it was just me. However, NOW - I don't know what to make of these electrical shock/zap-like sensations. I guess I'll be going back to the neurologist but I wonder if my joint pain is related to it. It's such an uncomfortable feeling - and it seems to get worse at night! i haven't been able to sleep soundly for the past week. It's like my body is on overdrive! My heart pounds (I took my blood pressure yesterday and it was SO HIGH....my pressure is rarely ever high), i can feel the impulses and the zaps (in my hands legs and feet) and the ringing in my ears gets really loud (but only at night). I don't get it! (Sorry....I need to vent)

And what's even more odd is that the fullness in my ear is not as bad as it used to be - I can barely notice it at all-though I really thought the zaps were also related to this too. Or maybe its just the lack of sleep.....I don't know....I'm just tired becuz its taking such a toll on my poor body......

Anyway - have a merry x-mas everyone!! You're in my prayers! Hugs -T :0-)


i just wish people could understand what is happing to us, im 30 years old and was very social LOVED to party, now im scared to go to work every day, but i do, because i dont want to live on the street and dont have any family that will take me in or support me. work takes a lot out of me phy and mental (im a bartender at very busy fine dine resturant) and everyone i know thinks that if i can do that then i should be able to do other things and trys to make me feel bad. i dont have one person in my life that gives a dame about my lil ear problem. i just wish they could see how tough it is and after 9 months that its hard to stay possitive

sorry i just hate the world


Hello everyone,

Maria, lovely message and thank you...I feel I found a friend in you, too!

Everybody...I wish you all and your families a wonderful Christmas...and finally, Rich, I couldn't say it better than Maria....thank you for keeping this site going! You're a star!

All the best, El xxx


I know how you feel scot - feels like it's never going to get better. that's why I come here - cuz of the support. xoxo


the support is one thing its just the stress that everyone puts on me ( oh come out for one) i worry about paying my bills every month i dont need any more, how much fun can u have when everyone is drunk and screeming and you feel like hell my girl friend thinks that i just dont want to do anything with her, ive been gearing up mentaly to spend a night with her fam all month, and as soon as its over she'll expected me to go to a club and party with her friends. i cant win. thx kim foe listen


Hi all and Merry Christmas!

T- You are not alone on the electric shocks, my family thought I was crazy when I told them that and I started to think I was too until I saw someone else was describing that symptom too. Mine mainly comes on at night as well and it makes you just want to go to sleep so you don't have to deal with it. Mine doesn't go into my hands and feet as much but it has before. I am also constantly spinning. The room doesn't spin around me, I just feel like I am swaying. My head gets heavy and feels full. I may have a few moments everyday where the swaying calms down some but for the most part if I am awake I am swaying.

I have an appt. with a new ENT on Monday and I am hoping he can tell me something new and enlightening!

I know this feels like it will never end but it has to one day. I hope you all have happy holidays. Rich, thank you so much for this site, it is an inspiration and encouragement.

Laura


Hi everyone,

Hope you all had a good christmas day. Mine was lovely - no dizzies. We went to a local carvery for lunch and I was dreading it because I haven't been too good lately. On going in, the place was already full and I felt a little bit strange but it passed after 10 minutes or so and I was able to enjoy my day. I also find that if I am too hot I start to feel really uncomfortable and it makes me dizzy but I took my little mini fan with me and it kept me cool!

T - I also get electric shock sensations but only in my head, never in my body. They hit me all of a sudden then I get a strange sensation all over my scalp. It's horrible. Laura, what is it like for you?

Scott, welcome. I and everyone here know exactly how you feel. I have had all these fears about losing my job and it must be so horrible for you working in a restaurant environment because that is one of the worst places you can be. It's all the clatter of cutlery and the noise of people chattering away that sends me spinning as I am very noise sensitive. Not so much now but in the early days it was horrendous.

I wish you had someone to fully support you. Let your girlfriend have a look at these message boards and other stuff on the internet and she may see that you are not just putting this on. It is a pig of an illness because you actually look well to other people and they really do not understand. But rest assured, it will get better for you. I have had it nearly four years now and when I look back, I really am so much better than I was. I tend to go for the quite life now and have virtually stopped drinking etc, but maybe that's a good thing! You will find that a lot of your friends drift away because they do think you just want nothing to do with them but they are the ones that are not worth having as friends anyway and your true friends will stick by you.

Don't hate the world Scott because it really is a beautiful place. You will not die from this thing and lots of people are so much worse off than you. Get back to basics - look after yourself, get out for plenty of walks and be positive! Spend time getting to know yourself and when you do start to feel better you will be a much better person for what you have been through.

Ladies - please get your ferritin levels checked with your GP. This is the iron reserves your body has and if yours is low it can cause dizziness and imbalance along with other things such as palpitations etc. I am still looking at this as the cause of all my problems because on doing research a lot of the symptoms fall in with mine. I have been taking iron supplements for nearly three months now and don't feel any different but it can take six months to a year or two to get your levels back up. Worth looking into and even if it does no good for my dizzy problems then it will be good for other stuff!

Maria, you are a true friend to me too and I thank you for your support.

Rich - thanks again, you are a star.

Love to you all

Sandie xx


Hey all! Hope everyone had a great Christmas. I had a couple of drinks at Xmas and felt a bit woozy after the first one but then had a couple more and felt surprisingly ok. Haven't had another major attack since 5th Dec but have felt a little dizzier the last couple of days. Have felt fatigued but am also going through my own personal anxiety issues so it may be related to that, also have numbness in my left leg with a bit of weakness, I don't think that's related to my ear though?! Just want to give you all a big hug!! Thank goodness for the internet is all I can say - without it we would never be able to connect with each other and gain strength from each other and most importantly to realise that we're not alone

Love to you all :o)


Merry Christmas!

I was in Asda the other day squabbling with this woman that queue jumped me. It's funny isn't it? How determined people become at this time of year! Anyway the girl at the check-out was telling me last christmas eve two women were knocking lumps out of each other over the last turkey in the shop. Apparently one of them had swiped it out of the others trolley when she wasn't looking! HAH so much for the season of good will!

My mate Fiona used to work in a supermarket and one of the customers threw an onion at her head at point blank range! She didn't like the way Fiona was handling her groceries! Another time she had a couple yelling at each by the check-out. The guy then threw a strawberry split ice-lolly at the woman. She managed to duck in time but it scudded some other poor woman on the back of the head. Outrageous! And made all the more fantastic by the fact the couple were in their 70's!

Hi El. How are your headaches? I hope you, Zac and your brother are having a fab Xmas!

Maria. Merry xmas sweetie! I count you as a friend too. You're a smart lass with a big heart :)

Sandie. Happy birthday and Merry xmas! I'm glad you had a lovely day. At least one out of the two days came good.

Angela. Merry xmas! How did it go? Please tell me it was an A&E free event?!

Laura. Happy xmas! I know what you mean about the time frame thing. Made worse because most of us on this site were told 3 weeks tops! What a load of C**P! Still keep smiling and laughing and it will shift quicker :)

Scot. Merry Xmas and welcome! I agree with Sandie. Ask your girlfriend to look at this site. People don't understand because you look normal. You need as much support as possible. We are all here to help you. Have you seen any specialists?

Merry Xmas T, Kim, Rita and Beck. I hope Santa was good to you!

I've got to go to the supermarket now! I'll see if I can make it out of there without fighting!

Merry Christmas Rich! :)

Lots of love

Katiexxx


Hi Katie

You sure are mad. Heard all about you Scottish lot. Terrify us english people. Only joking, I went and married a bloody scotsman. Keep telling him to go back but he won't!!!!

I work in a lovely quiet garden centre now, thank god, but I used to work in Argos! Jees, the customers we had in there! There was a few times when they were jumping over the counters trying to attack the staff and I was only there for three months over the christmas period. You learnt how to run if nothing else! And, the shoplifters, walking out with the display televisions under our very noses. Mad or what?

Love hearing your stories though Katie, keep them coming!

Sandie


I need help guys. I am down - really down. This is started 6 weeks ago today.

My symptoms include - vertigo (2 x), everyday weird dizziness, sharp pains either on my right side of head and eye or left, at night I'm dizzier, and the anxiety is insane.

Do others have my symptoms? The MRI they said clear. But I'm scared. I'm scared that I have to learn to live with the for the rest of my life.

I'm 32 weeks pregnant too - my Mom seems to think that after I have the baby my life will go back to normal. That seems to good to be true.

Please guys - help me. Tell me I'm not dying - tell me that I will get better - at least some day.

I know I've written before - but I'm just wigging out.

Thanks for listening & my prayers go to you guys suffering like me. KimD


Kim

Steady up girl. You are not dying it's all part of the illness. Your emotions are in a heightened state because you are pregnant. You have to find a way to calm down. I had lots of stabbing pains in my head and they all went away with time. I doubt very much you will have to live with this for the rest of your life. -That's your anxiety talking. You need to rest and try and reduce your stress levels. This illness has the ability to wreck your head. I felt exactly the same as you described, and I'm here.. 100% better. So of course it can go away! This is not going to be your life forever. The future will bring so many happy times for you. We are all on your side and it will be ok :)

Sandie... We are all mad up here. Although my mum's family are from Dorset and my father is German. So I talk with an English accent. Strange eh?! I could just imagine after a run-in with your other half you telling him to p**s off back to Scotland! Fantastic.

As for Argos.. you are a brave woman working in there! I bet there were days when you wondered if you would make it out alive?! That's so funny Sandie. You nutter. In Glasgow Argos at xmas is like feeding time at the zoo!

Hope you are doing well :)

Katiexxx


Hello all and I hope you all had good Christmas and Boxing Days!

Mine were good...I almost felt normal at one stage! I was 80% until this morning. I woke up slightly dizzy plus the constant disequilibrium and as the day is passing I can feel a tension headache coming on so I am knocking back ginger teas! :-)

Katie, my Christmas with Zac and bro was great! They've popped out now to get some munchies for a night in watching movies (we went shopping today and bought a load of boxsets) :-) No headaches until today but I am fighting it and I think the ginger is doing its thing! How was your Christmas?

KimD, I so feel for you, what with being pregnant too, but, the truth is, you do have to learn to live with this for now, but only until it goes. The fact that no one can tell you when it will go does not mean that it will not. A clear MRI should have been some form of relief for you. Avoid getting water in your ears, stop caffeine intake asap, cut down on sugar as much as you can as well as dairy products...eat loads of fresh fruit & veg and stay as active as you can (considering you're pregnant). In the beginning I was so scared that one night an anxiety attack ended with me at A&E...in all honesty, it was my worrying and panicking that got me there...I have since learned how to control my fears and worrying by focusing all of my energy on things that make me happy.

Take care all and I hope 2009 sees us all in good health!

Best, El xxx


Wow you guys (girls)are great i wish i found this web site 9 months ago. i was wondering about vrt and if its worth doing it, it kinda cost a lil more than i'd like to pay, plus i heard it makes the labs worse for a while and i would only be able to get a day or two from work for the next month.also does any one know some exercises that i can do at home.


Seasons Greetings all,

To update my VL story I have been seeing Dr. Epley in Portland and have completed his battery of tests, ENG, Balance, Caloric and a host of others. The caloric test where they put warm and cold water in your ears while watching for nystagmus was the most informative as there was a normal reaction from my right ear and NO reaction from my left ear. The diagnosis was basically nerve damage in my left ear due to the viral infection and also a large chunk of crystals sitting on the vestibular nerve. I'm going back in tomorrow for a ride in the Omni-Ax chair to try and reposition the crystals. If that doesn't work Dr. Epley informed me that a fix could involve injecting Gentomyacin into the inner ear to deaden the nerve which also has the side affect of hearing loss. Right now I feel some hearing loss in my left ear is worth getting rid of the constant imbalance/woozy feeling. Has this treatment been discussed by any others and their docs?

I'm also drinking the ginger/honey tea, doing the VRT exercises and taking b vitamin and lecithine but have yet to see any noticable changes in symptoms but I've only been on this for about 10 days.

Fritz


HI everybody; everyone seems in good spirits after Xmas. I ate too much and felt like c**p for two days. Today I had a dinner party and felt much better. No dizzies. But I am not out of the woods yet yet, symptoms still crop up from time to time. But I feel that I am slowly coming out of it, after 14 months. Kim, honey, we are all here for you. As for thinking you are dying, that's exactly how I felt last Xmas. It will get better, it just takes time. Since your MRI was clear, it's not likely anything else. It's normal to be anxious, you are dizzy, feel like heck, and can't believe that something as small as an ear canal(or a nerve in my case) can cause you so many problems. But it can, and it will get better. I had the exact same symptoms, jabbing pains, dizzy 24/7, just dire. But it has gotten better, but has taken a long time. If you don't have any damage done to your inner ear, yours will be much shorter. Fritz, my caloric tests were the same as yours. No dizziness in the left ear during the cold water test. So mine was diagnosed as basic nerve damage too. I don't have the additional problem of the crystals, but I have read that it is very common with this condition.They will try and knock the crystals away from the inner ear, they are very successful at treating that. Scott, we are all with you. We have all been there, so feel free to vent. Keep in touch. Sandie, Katie, El, hope you had a blessed Xmas. Love you guys, Maria


Thank you so much for all responding to me. It makes me feel so much better than I am not alone - that I have symptoms others have or have had. You all are my rocks. Much love to you all. Kim


Right Sandie...

When I was in Florence I stayed with my friend Daniela, her brother and his three flatmates. All four guys were Italian police. (security branch) Imagine staying with four Italian policemen? I must have been nuts. Anyway while I was there one of them was on suspension from work.

"Francesco" to be precise. It was a normal day for him at work. Guarding the bank and drinking far too much coffee. Anyway as the day went on natured called and a trip to the men's room was in order.

Newspaper read and job done Francesco returned to his post. He got the distinct impression there was something wrong but couldn't work out what. Door goes and a customer walks in. "Where is everybody"? she enquired. Oh shit thought Francesco. Good point where IS everybody?! No customers, no staff behind the cash desks. Everyone appeared to have vanished.

Ah... Not vanished. Just tied up! Behind the counter all the staff had been restrained and gagged. The bank had been robbed! Money stolen, tills emptied. All while Francesco was having a D*MP. Spectacular.

He did manage not to get sack. But only just :)

Scot I'm afraid I know s*d all about VRT. I'll let someone else attempt to answer that one. On page nine (posted July) there are gaze stabilization exercises. They might be of some use to you. So, what exactly is your situation? If you've had labs for 9 months I suppose you must have had an MRI, seen ENT? etc.. On a different note, I would really recommend head massage. Grin at your girlfriend and see if she'll do it! It makes you feel more human, even if it's just for 10 minutes every few days.

Cheers all

Katiexxx


Hi everyone'

Scott - if you click on the 'inner ear disorders board' link at the top right hand side of this page highlighted in red, then once on that click on the sticky 'information archive' at the top of the message board, left hand side, you will see a list of website addresses you can use to gain all the info you need for VRT etc. You will have to type the addresses into your browser yourself as you cannot click on them but there is loads of info in there and the Dr Rauch videos are very informative. VRT is worth doing and I still do gaze stabilization exercises every mornng. They all help your brain to recover more quickly and compensate for the damage done. Oooops I have just realised why I am still suffering after all these years - I haven't got a brain!!!!!

Katie - you truly are mad, you must be such fun to be around. Wish I had your energy!! As for Argos, they practically camp out in there over christmas, it's a wonderful place to work, haha!

That's one thing about life - I love to laugh, can't bear all the miserable faces around me. We were sitting in the pub having our christmas dinner having a laugh and I looked around me and said to my family, 'gawd, look at all the miserable faces in here', I think people have forgotten how to laugh, what with this credit crunch and all of that.

Fritz, my consultant wanted to inject my ears with something, I think it was steroids. But, I went home, had a think and decided against it. I am at the four year mark with this thing and most of the time I am ok, but still keep having relapses. I decided that I would rather live with what I have than take a chance of my dizziness being worse or deafness occuring as I have never had deafness. Google it because when I did I am sure that it was saying that it is not a highly successful procedure.

El and Maria, I am so happy for you that you actually had a good christmas, it is so nice when you can acheive that isn't it?

Kim - please don't despair too much. It is a waiting game. Just be patient, you will get better. For me, suffering now for years, it is so much better than when I was first struck with it, so that's gotta be a good thing!

Keep positive!

Love to you all

Sandie xx


Scot

Comment number 62 on page 6 has VRT Turning Exercises as well. How's that for a find?! Good luck with them :)

Bye again

Katiexxx


thanks everyone ive been dealing with this since last feb when it was really bad my doctors didnt care what so ever i saw about 20, one even said "its out of my hands" finaly i saw an ent and he said it was labs i got mri and ct and it shown that my inner ear was inflammed and then got some more tests but no nerve damage,slowly it cleared up in july and i felt 100% i was running 10k,working out,going to clubs everything normal. but then in august i partyed way too hard and it all came back pretty much every symtom that you all of you have and ive just been waiting it out. ive just made vrt apointment and talk to the guy and he knows what he's talking about and if anyones in or near toronto is interrested i'll let you know how it goes

my spelling is awful i no, sorry


oh and thx for all the info

scot


Hi Maria,

I've done some reading on the gentomicin injection and have decided to forgo this treatment based on what people have reported. The appointment at Dr. Epley's office yesterday went well with some marked improvement. Dr. said sometimes it takes 8-10 treatments in the Omni-Ax chair to dislodge and reposition stubborn (sp?) crystals so I'll keep at it.

Happy New Year to all, if you can't be good, be careful!


Hey Scot

First of all... Please, no apologies for the spelling! This is a place for you to vent your frustrations and feel at ease. It's not a test :) Often... I find, you have to write on impulse. You know?, how you feel at that exact moment in time. I wonder Scot. It was just when I read your post about partying too hard. Whether or not you have a sufficent intake of vits coming in? You give off a vibe of being an eat and run sort of guy? I used to waitress in a fine/dine restaurant. Generally speaking you feed everyone else and forget about yourself? Please correct me if I'm way off the mark?! Anyway good luck with the VRT appointment!

El sweetie! How's tricks? Are you all munchied out. Or are you in it for the long haul? My xmas was fab. Although, I don't know where it went! It was here, then it was gone! I'm off to Edinburgh tommorrow night for the New Year street party. So should be a hoot :)

Maria.. I hope you feel better! I must admit I did giggle when I read your post. I Quote... "I ate too much and felt like CR*P" Brilliant :) So matter of fact!

Happy New Year you lot!!!! Maria, Sandie, El, Laura, Scot, Angela, Beck, Kim, Fritz, Rita and T.

And Happy New Year and thanks to you Rich!.... The man who doesn't know how to quit and is therefore slave to his computer :)

Cheers All

Katiexxx

[My computer is a slave to me! To me! I think... -Rich]


Kim D - please look into Migraines. (especially Migraine Associated Vertigo). You don't need headaches to have Migraine, and all that it encompasses. Hormones (you being pregnant can play a significant part).

Fritz- PLEASE do your homework on the Gentomycin in the ear. PLEASE.............. there are so MANY things that could be causing your problems. DON'T purposely cause permanent damage unless your Doctor can GUARANTEE results. I know too many that have had it done, with nothing to show for it but PERMANENT hearing loss. Please research it. Don't just take your Doctor's word.


Hi all,

Just popping in to wish you all a very Happy New Year.

Wishing you all the best of health for 2009, don't forget it gets better from here!!!!

Lots of love and hugs

Sandie xx


Just want to piggyback Sandie - HAPPY NEW YEAR EVERYONE!! HERE'S TO OUR HEALTH!! :0)

And THANK YOU SO MUCH RICH for keeping this site going! You're amazing!! I remember when I first discovered it, I wanted to cry! :0)

....and with that - I just want to report I'm feeling LOADS better these days - I rarely feel the fullness or pains in my ear anymore. I still feel the "zaps" at night but its not as bad as it used to be. My blood pressure and heart rate has decreased several points and the tinnitus has become very faint. The process is still slow but I'm seeing major improvement......and my balance, believe it or not, is returning to normal. The swaying and rocking is not as violent as it was.

I plan to see a chiropractor on Jan 9. Taking the advice of my aunt's doc (he's in Jamaica...and can u believe he called on Christmas....what a gift!) he explained there may be something going on with my upper cervical spine....and if correct, all I may need is a re-adjustment of my C1 + C2 vertebra. I gave him the laundry list of symptoms and all I've been going thru and he told me to have my GP check out other areas of my body (ie. my kidneys, adrenal glands, thyroid the swollen lymph node under my righ jaw, etc) becuz my metabolism may also be off (since I've lost weight). He said this could explain the increase in heart rate and BP. He told me to also look up info on 'indicators for cervical spine problems'....apparently there's a lot of clinical info out there about vertigo-related/inner ear disorders and upper cervical spine mis-alignment. I researched it and surprisingly found some interesting articles. If I remember, he (the doc) said there are arteries that branch into the maxo-something-facial areas - ears included that can cause increased pressure, positional vertigo and a host of other symptoms (like we've been experiecing) due to potentially increased pressure on the cervical spine as a result of misalignment. All this can vary from person to person but hey, sounds viable to me. I don't know just keeping my options open......I'll keep u posted on how the appt turns out.......

Big hugs all! T :0)


Hi everyone: Just wanted to wish everybody a Happy And HEALTHY new year which I hope will be dizzie-less for us. And God bless Rich. Hugs, maria


I wanted to come in and say thank you all for supporting me through this - and I wish you all blessings for 2009. xo KimD


Hello all,

Katie, am still munching ;-) Hope you have a super fab time in Edinburgh!!!! (am sure you will)!!!

Just wanted to wish everyone a happy and healthy new year!

To everyone that has beaten this monster...I wish you continued health...to everyone that is fighting it...I wish you victory sooner rather than later!

Best, El xxx


Happy New Year everyone! It's been a while since I've written and I'm glad to see many people getting through this horrible illness.

Unfortunately, I had yet another run in with the beast. As I was preparing for New Year's festivities by cleaning house, I became quite dizzy. The strangest thing happened though. Generally when I get dizzy everything spins. This time it only occurred when I was walking and it was as if I was on a boat or trying to walk on sand or uneven planks on a boat dock. When I laid down, I was fine, nothing spun, nothing shook. I slept for about an hour or two, had to cancel my New Year's Eve party too :( But I did make it to see the ball the drop at least on TV and am feeling better, albeit a bit tired, now.

I'm up at 3:00 AM worrying if I will wake up with this awful spinning sensation again. The last two times I got this, I felt something similar the night before so raise a Champagne glass for me, please (it will be too late by the time this is posted but wish me luck anyway).

HAPPY NEW YEAR all and here's hoping this one will be the greatest year yet! Keep your spirits high and let's keep rooting for each other. Thank you Rich for your wonderful site!


So the doc says I have Vestibular Neuritis something like that. I assume that is very similar to LABS.

I have had it for 7 weeks now. Is that relatively a short time?

Is it worst for anyone when they lie down? It is for me. And that's all I want to do because I'm so tired. KimD


Hello, all. I'm new to the forum, but I'm experiencing many of the things you all are describing. My symptoms started in June, 2008, after I flew from Wyoming to Seattle and back. I began getting a "spacey, dizzy" feeling that made me feel like a bobble-head. :)I was diagnosed later in July with an inner-ear infection and was given an antibiotic and prednisone. Well, it worked for about 2 months. My symptoms all flared up again in September of 2008 when I went back to teaching after the summer. I teach first grade and have a very challenging group of children. It appears that the onset of this is all cold and sinus related. Has anyone else had the cold and sinus issues prior to the dizziness? I have tried meclizine, which worked for a while, and prednisone, which no longer works. I have constant tinnitus, periods of spaced-out bobble-headedness, occasional headaches, and extreme fatigue. I am very frustrated and scared. Thanks for sharing all your frustrations as well.


Also, forgot to ask - is it normal to have it get worse on occasion? Even after 7 weeks?

Sorry to bombard you all with questions, if you are sick of me just tell me to zip it.

Thanks all xo


HI everyone: Happy New year to you all. Let's hope this year is an improvement, because I just as soon forget last year. Kim, good to hear you got a diagnosis. Did you have balance tests? I am suffering from Vestibular Neuronitis too, but it wasn't diagnosed until recently, after I'd been suffering for a year. Neuronitis means the virus damaged your nerve that connects the inner ear to the brain. Hopefully for you the damage won't be permanent, for me it was, and although I got better in the spring and summer, I would relapse over any little thing: weather changes, sniffles etc. I found I got relief when I lay down. But the dizziness and nausea were awful. On and on for 14 months. Better lately, doesn't seem to be as sensitive. Humidity still brings it on, and being overtired. Yours will probably clear up soon.VRT definately helps. We are not getting tired of you Kim, you are asking intelligent questions, and we hope that you will find the answers here. Lisa,welcome to the site. Everyone here is very caring, and Katie brings humour to every situation. Regarding the sinuses, my problem started with a sinus infection that didn't seem to want to go away. Everytime the sinuses would act up, so did the VN, the sinuses aren't located far from the vestibular nerve, so you can see there might be pressure on the nerve if the sinuses are inflamed.Haven't had any sinus probs lately, let's hope it continues, because I'm sick to death of this thing. But it definately has improved and I'm thankful for that. Managed to go out New Year's Eve and had a sip of champagne, last year I spent it in bed. A big difference. Everyone else, hope you had a nice New Year's and I wish everyone all the best for 2009. Hugs, Maria


Happy New Year all,

Kimm: I've made the decision to forget about the gentomicin injection for now, thank you for the advice.

I'm going back to work next week and see how it goes. I feel I can perform my job safely and have a medical release from my doctor. After 4 months I'm ready to get on with my life and do what I can. The good news is this has caused me to take a good look at my lifestyle and make some positive changes like exercising more and paying closer attention to what I eat. My wife has been the greatest through this whole ordeal, I can't thank her enough.

Fritz


Happy New Year everybody!!

Well, I went and saw a neurologist on Friday and he is another doc I can add to my list of 'time-wasters'. Another stupid doctor who thinks I am imagining what I am feeling!

Ravyn, how were you when you woke up?? I hope it was just a dizzy day and not what you were worrying about!!!

KimD, I can't begin to tell you how lucky you are to actually be diagnosed...I've suffered since 15 September 2008 and not one official diagnosis yet!!! Anyway, read up on what you have and do all you can to ease it along and on its way :-)

LisaD, welcome!!! Personally, I refuse to take any medication other than herbal remedies. I've read that most meds just mask the symptoms rather than treat them. I guess it's not so difficult for me to do as my dizziness has never confined me to the house for more than a couple of days. I too suffer with my sinuses. Steam inhalations have helped me a lot, as well as inhaling eucalyptus oil on a tissue throughout the day. I currently take Ashwagandha with Gotu Kola capsules which strengthen the nervous system as well as help with stress and anxiety and also, Ginkgo Biloba (capsules), which enhances circulation and is good for vertigo and ringing in ears. For the fatigue, I found that working out at home has done wonders. Start slowly, just simple exercises will help. I now work out for an hour a day (Walk Away The Pounds workout video which needs little room and is mainly walking on the spot) and I feel all the better for it. Finally, for the headaches, fresh ginger tea, which really does work!!! I have been at around 80% for the last week or so which is a great improvement!

Maria, woohoo for the champagne!! ;-) Good to see you went out, I bet that felt great!!!

I wish us all a healthier New Year 2009!!!

Best, El xx


Hi all, I haven't been to this site for a while. I used to comment quite a bit...back on pages 8 and 9. I've been terribly busy working two jobs and volunteering. The good news is that I had the strength and energy to work so much! The bad news is that I wasn't able to come here and check on my friends. I hope that everyone is feeling well and getting better!

My first attack of this dreaded beast came in August of 07. It started with pressure and ringing in my left ear. I had to fly to Portland for work (I live in Utah) and while there I had a vertigo attack. Not room spinning kind of attack, but felt very dizzy and threw up for most of the day. Luckily I was ok by the next day and could fly home. I spent the next several months feeling quite off balance. I did several balance tests and had an MRI, and was basically told: We're not sure what you have. It's probably MAV. We don't know how to treat you. Go see a neurologist. So, that's what I did. Unfortunately my neurologist hadn't really heard of MAV, but she did agree that migraines can be silent, not painful at all, and can cause visual disturbances, ringing and pressure in the ears, and dizziness or vertigo. She gave me a pill called Midrin which I'm only supposed to take at the first sign of a migraine.

I started to feel better around June of 08. I felt about 90% better by August of 08. In October, I traveled to New York for work, and my ear started to feel full and ring again. I began taking an over the counter diuretic and vitamins, and the pressure subsided within 3 or 4 days. no vertigo attack. Woo hoo! For the past two months, I had been feeling really great. Then, over the weekend, the ringing came back very intensely. I now have slight pressure in my ear, and the constant ringing. I think that the stress of the holidays, along with weather changes, brought it on. I'm trying my vitamins and diuretic routine again..hopefully it will help.

I found this site to be a godsend whenever I'm down or need encouragement. I hope it's provided encouragement to others here as well. I have found that the best I feel is when I'm eating well, cutting out the sodium and heavy caffeine, and when I stay active. It is possible to feel well, and I hope you all find the strategy that works best for you.

I too believe whole-heartedly in vitamins. I like taking lemon bioflavanoids, ginko, grapefruit seed extract, and B vitamins. They seem to really help my overall health and peace of mind.

It can be quite frustrating when doctors tell you that they have no idea what's wrong with you. I just want others out there to not lose hope. I believe that within my lifetime they will find proper treatment of this illness. Until then, I will keep searching for the answers on my own.

Just wanted to say hi to Sandie, Rhonda, Maria, and some of the other regulars who helped me so much in the past. Also, wanted to welcome the newbies and encourage you to be proactive and not lose hope. Try to find the things that help you feel better...and try monitor the things that make you feel worse. Hopefully one day one of us will have the answer! ;)

Take care all.

-Skye


Hi El!

Glad to hear you are nailing your headaches and the munchie scoffing is still on track :) Well... had a fab time in Edinburgh. Drank far too much and behaved really badly. Went to bed at 8am. That's what I call a decent night out! The particulars are too out of order for this forum! Drat! Hehe :) I laughed at your post about another Dr to add to your list of time-wasters! Two of the drs I saw tried to give me a good shove! I can only presume to see which way I would topple. Me, being stubborn didn't move an inch! I was ready for them you see! They are... in fact useless! But never mind them. Your attitude is good. Even when you feel like it isn't, just keep telling yourself it is. You will start to believe it more and more.

Are you having head massages? If not.. Now's the time! :)

Keep fighting, keep believing and keep laughing!

Love Katiexxx


Someone above mentioned that their doc said they might have to be on SERC long term. That wasn't the case with me so I'd get a second opinion. As I said in my longer post, I have hydrops/Meniere's that comes back on me as a sort of labyrinthitis ever few years -esp after an ear infection. (see my post of Nov 30th).

Well after three months on SERC and forcing myself to stay active, my symptoms started to recede (as well as my SERC doses) in early December and I have been symptom free now for three weeks.

So try the SERC but I would only use it when you feel off-balance. Once you start to get better, reduce the dose, and eventually go off it. [I'm not a doctor though]. Also, keeping active while on it has addressed the "slow to recovery" issue with me. In fact, this is my fastest recovery yet.

All the best folks. I'm totally better.

Stephen


Hi Katie,

Well, it sounds like you had a bloody ball, woman!!! It brings back some memories of when my weekends (nearly every weekend for a few years) consisted of 'decent nights out' ending the next morning!!!

Until the summer of 2007 when I moved back to London, I was living in Cyprus for 15 years and let me tell you, my Saturday nights out would see me leaving clubs at 4.30am when they closed, go on to some all-night diner where we would munch our hearts out (usually a hot soup to ease the stomach after all the Jack Daniels), then to whoever's house to change into our beach clothes (if not in our cars) and then head off to the beach to sleep it off!!!!

Of course, I have since gotten engaged, moved country and am now a good girl :-)

Anyway, the neurologist sat me up on a bed then pushed me down and pulled me up at a rate he considered fast and had warned me of prior to doing it (I move faster when cleaning my flat)!!! Of course, this was all to no avail which made him more convinced that I am imagining my symptoms! He said... "When we move faster than we should, sometimes we get dizzy. Try not to rush when doing things and you'll probably feel better." Yeap, he honestly believes that I've been off work for the last 4 months because I don't know how to move without getting dizzy... something he seems to consider normal as he didn't hesitate in sending me on my way!!!

As for the head massages, I get one out of Zac every couple of nights ;-)

Stay well everyone!!

Best, El xxx


Hi

Skye, lovely to hear from you. I am so glad you have this illness under control!

I too, am not too bad with it all, I can cope with it most of the time. My last relapse was Jul/aug when I got the mumps! I do still suffer quite a bit from dizziness and loss of balance but I find I can work through it now. I am not so scared of it all!

The positive thing, as Fritz says, is that you actually take more care of yourself after suffering with something like this. It is a bit of a wake up call and makes you value life a lot more. Fritz, so glad you have your lovely wife to support you. I have the support of my husband who is excellent with me when I am really poorly. I can't imagine what it must be like if you have no-one.

Oh Katie, Katie, I sooooo wish I was young like you again. I find it hard to stay up past 9pm nowadays!! Mind you, I have an excuse coz I have no iron in my body but hey, you go for it girl. Life's too short to be TOO good!

Talking about doctors, my consultant (the top man at my ENT), decided that I needed this operation to put grommets in my ears and then inject me with steroids on the fact that I couldn't walk heel to toe in his office. I can actually walk heel to toe quite well and asked if I could do it again because I knew I could do it and he said he had seen enough!!!! Excuse me, but most normal people can't walk heel to toe and I did have shoes on which had a heel! Unbelieveable. Needless to say, because of his lack of caring and the fact that he didn't actually ask me about my dizziness, I did not go through with it.

Anyway, all of you take care and keep smiling.

Sandie x


Hi All- I hope everyone had a wonderful New Years, my husband and I rented a cabin in the Smokies with 16 friends for a couple of days and had a ball! I was having a couple of really good days while we were away but I think I may have overdone it because I feel like total crap now:(

I went to see a new ENT about a week and half ago and he was actually very good. I am not healed but he spent alot of time with me asking tons of questions trying to get all the information. He thinks I have hydrops and not labs. He has put me on tiamterene which is supposed to extract extra fluid. He said it would take 10-12 days before I felt any difference. I am on day 9 and just waiting for a miracle.

Stephen-I see that you have hydrops too and have been on SERC. What is that medicine exactly and what does it do for you? I am going to ask my dr about it next time I go.

Maria-My electric shocks in my head feel like my whole head is hooked up to a power source and that there are electric currents running through my head. It kinda feels like my head is on a charge. Does yours feel anything like that? Someone ask me the other day if it hurt. It doesn't really hurt it is just uncomfortable, annoying, and makes it really hard to concentrate.

Does anyone else feel like loud noises kinda vibrate the inside of their head? I seem to be really sensitive to certain noises. It doesn't really hurt my hears but more jars my head. I am in the middle of my 13th week and just praying this lets up soon. I go to see a neurologist on monday so I will let you all know what he has to say.

I hope everyone is starting to feel better in the new year!

Laura


Hey Guys Happy New Year

Well Katie Xmas was a A&E free event this year! Just to let you know how I am getting on, been taking the Serc tablets from a week before Xmas now and fingers crossed I feel alot better, had 3 days now in a row feeling much more like my old self, I am hoping its going to be continuos!! Went for my MRI last week, torture it was, the noise sent me into a attack of the dizzies and It really was awful. Like a numatic drill in my ear drums, not nice!! Been wanting to post but wanted to see if the tablets where working, fingers crossed guys these wee pills sort me out!!! Felt positive after reading that the SERC tablets helped someone else.


Hi Everybody, I'm writing this for my sister. We work together everyday. She has been dealing with this Labyrinthitis for 9 Weeks now. The Dr put her on Valium (2mg) as needed. Anyway Having gone thru Menopause, Have any of you noticed a connection between these two? Thanks for any Help. Cara


Hiya

I am having a bad day today after feeling so much better the last 5 days, Why does this illness trick you into thinking your beating this then it slaps you right in the face again, feeling low! :-(


Angela

Don't worry sweetie. It's just the stinking weather. I'm in Helensburgh about 25 miles west of Glasgow and it's awful today so, I'm sure your weather must be about the same? I think atmospheric pressure has something to do with it. Of course you're still beating it. This is just a bit of a blip! :) Go get some dvds or watch something funny on the bbc iplayer. I found Little Britain good therapy when I felt like shi*e!!

Cara... For me there wasn't any connection between menopause and labyrinthitis. I'm 29 and it lasted for 16 weeks. I know a lot of the girls on this site are quite young. There could however be a link with ferritin levels (iron reserves) Sandie has written some posts previously- I think on pages 9 & 10 that might interest you. That's really nice that you're writing on behalf of your sister :)

Cheers Katiexxx


Hello all,

Angela, you are not alone in having a bad day :-( After being at around 80% for a while, I decided to return to work (after being off for 4 months) for a few hours a day and started back on Friday. Feeling great after work, I went out to dinner in the evening and felt exhausted when I finally got home and to bed.

Yesterday I woke up feeling more off than usual but still managed to get down to the shops and do a bit of cooking, but today has been an absolute nightmare and I knew it the moment I opened my eyes this morning. For the first time in a long time I cried my heart out from frustration and have been on the couch all day feeling down and blue.

I'm supposed to be going to work for a few hours tomorrow and am just hoping that I wake up better than I did today.

Cara, I'm 34, so no menopause connection for me either.

Stay strong everyone, El xxx


Forgot to ask a question... has anyone noticed if spicy foods affect their condition in any way? For the first time since the onset of my condition, I ate a spicy curry yesterday and was wondering if that might be to blame for the crap I'm going through today.

Best, El xxx


Hi El

My father and I are both chefs and he managed to burn all my taste buds off with vindaloo by the time I was 4. So, not sure about the spicy food thing. I have a couple of suggestions though.... Spices tend to affect your sinuses. You know how fresh chillis etc can affect your throat and breathing, perhaps they are trying to clear congestion? or possibly they've just aggrovated you? (You'll be more sensitive than usual) Maybe you'll feel crap now and better for it in a day or two? On another note when you went for your MRI, hearing tests etc am I right in remembering it didn't show hearing loss or any inner ear damage?

If you ever want to e-mail me it's kateberlin@live.co.uk Sandie, Maria, Angela and Laura. I hope you girls are doing well?!

Love Katiexxx


Hi everyone, I am so pleased to have found this website - I only wish I found it much earlier! I am 3 months into what I am sure is labs - am going for hearing and balance tests next week then a review with my ENT hopefully to find out for sure. I just thought I would put my two cents worth in - has anyone heard of bioresonance therapy? It's a fairly alternative treatment but apparently can isolate viruses and eliminate them. I know that it has been successful for eliminating allergies. I went for my first treatment last week and am feeling a bit better but maybe that's just a coincidence. I am going again tomorrow for another treatment. I just thought I'd give it a go seeing as no doctor had been any help at all so far! The other thing I have been taking is olive leaf extract which is supposed to be anti-viral and boost your immune system - I thought the last thing I needed was to pick up another virus and have a setback! It has made me feel so much better to read all of your comments and know that I am not alone both in the symptoms and with the way this sickness hangs around for so long! I have been really lucky to have a lot of family support for the last eight weeks with looking after my two young children as I really haven't been fit to take care of them but I am going home to Melbourne at the end of the week as school holidays are nearly over so am quite anxious about having to do everything again! Not to mention having to drive them to school etc. Anyway I have improved so hopefully that will continue. All the best to everyone with your recovery Cathy


Hi Katie,

Well, I think I am slightly better this morning and will try to make it to the office. I say 'try' because it's a bus and tube ride away :-$ What you are suggesting about congestion is highly possible as I do suffer with my sinuses and congestion. I guess time will tell.

As for the MRI, I have yet to be sent for one. Will book an appointment with my GP and will try to get her to send me for one. But you're right in that I didn't have any hearing loss when I had a hearing test beginning of October. Other than a hearing test, I have not been sent for anything else, not even balance tests...great doctors, huh?

Anyway, I'd better get ready for work...am lucky that they have offered me 3-hours per day to suit my condition until I get better...I really don't want to mess it up.

All the best, El xxx

PS...I envy you growing up with a 'chef dad'!!!!


Hi Cara,

I am 48 years old and have not gone through the menopause as yet but I suppose it is looming on the horizon! My periods are regular, with only a couple of 'blips' over the last year where they have been quite late.

As Katie mentioned I have a very low ferritin level of 10 when it should be anything up to 150ish. This means I have no back up iron stores in my body though I am NOT anaemic. This can cause dizziness and balance problems along with a host of other stuff. I am hoping this is the case for me and that when I get some iron back into my body (which can take a couple of years!), I will start to feel better.

Regarding menopause, are you saying that your sister has actually gone through it? I have had very very heavy periods for years and that is probably why my ferritin levels are so low. But, they reckon that once you are through the menopause, low ferritin should not be much of a problem as you are not losing the iron every month through blood loss.

However, I still stand by my guns and recommend that all women have this test. It takes a few minutes and is a simple blood test.

With me, I have suffered from this cr** for four years and really it is going on too long which makes me think it could be all down to the ferritin. I have battered my body for years with a useless diet (young ones take note) and have had heavy periods since being 13 years old. It is bound to catch up at some stage and can't be put right overnight! Every time I have fell ill with something, i.e. the mumps last time, I have had a major relapse of the dizzies and balance problems along with it, which all makes sense if my body is trying to dip into these iron reserves and they are just not there. Hormones also have a huge impact on the dizzies and boy do your hormones float about during menopause, such fun for us women isn't it.

El - was your spicy food from a takeaway? There is a known link between MSG and ear stuff. It is really bad for you and can cause a host of symptoms. These takeaways lace their food with it as it makes it taste better. Watch out for it in other stuff too especially Walkers pickled onion crisps (my favourite). I have been happily having a bag more or less every day for the last few months (my little treat), and was shocked to see that they have MSG in them. No more for me, aaagh!

Oh, and I also suffer from this sinus stuff and have asthma to boot. All connected, I am sure they are.

Hi Cathy, welcome to the board. Word of warning, don't hold out to much hope for the ENT - they are useless, in this country anyway (UK). Let us know how you get on with this new treatment, that will be interesting. Try not to get too anxious about doing stuff. My philosophy always was, after I got over the really bad stuff when I thought I was dying, to force yourself to do things, if you do fall over, someone will help you, hopefully! Keep positive and it really does help.

Katie, I have had quite a good week. Still suffering but not too bad on the grand scale of things. Been bloody freezing lately hasn't it? Feel sorry for you as I know how cold it can be up there in bonny Scotland! We take our winter woollies when we go for our summer hols, haha.

Take care everyone.

Sandie xx


Hi El

How is your vision? Do you have any problems like myokymia or nystagmus? I've just read through some of your previous posts and your situation really does sound similar to how mine was. Are you still suffering from stress and quite a bit of anxiety? I know I did, and I really tried to put a brave face on it. If you are struggling. I would really recommend having a holiday if you can. (Sounds like a good reason for a spa weekend to me!) Sometimes just getting away and seeing the world from a different perspective can really help your emotional strength. And bully the drs for an MRI. I'ts pathetic isn't it? How you have to fight for help. Especially when you feel weak and like the stuffing has been knocked out of you!

As for the chef thing. I'm afraid I was spoilt rotten! Although it's a total bummer when you go out for dinner and the food's cr*p!

Cheers Katiexxx


Hiya Katie,

My vision is okay...I visited a specialist at Moorfields Eye Hospital here in London as a process of elimination and had an orthoptic test done along with a load of other tests for eye movement and the like and though I was given prescription glasses by an optician in September '08 (3 days before the onset of all this crap), the specialist advised me to stay away from them as the weakness in my eyes is so minor that it really does not warrant wearing glasses!!! I didn't wear them anyhow once all this crap began and now I will definitely not go near them. Though my eyes aren't great...they feel strained most days and vision feels 'off' but they have been checked and I felt as though I could trust that specialist as he was very thorough in his examination.

My stress and anxiety has lessened a hell of a lot as I stopped work as soon as this all began and only returned for 3 hours a day from Friday last week and it is not at all stressful now. Saying that though, it is a known fact that though we might feel considerably stress-free, our stress levels could be peaking sub-consciously due to the 'brave face' we wear, so, who's to say. I'm great at carrying the world on my shoulders and carrying on with life as though nothing is happening...it's an awful habit to get into and very hard to break...but I am aware of it and am discussing it with Zac, trying to find ways to let go of this 'emotional' load.

Planning a long weekend break with Zac in Greece some time in February...going to book a church for our wedding in september :-) so am looking forward to that!! Am pushing the thought of not being 100% by then to the very back of my mind for now!!!!

Will see my GP on Monday and will do all I can to get sent for an MRI and will ask to get ferritin levels checked...but I no longer have hopes where drs are concerned... they have been a waste of my time, energy and hope so I keep my faith for myself and do not put it in them anymore.

Sandie, I cooked the curry myself but will check the curry and chilli powder for MSG...could it be in there??? I read previous posts mentioning MSG but didn't make a conscious point of looking out for it!

Stay well everyone!

Best, El xxx


Well after months of illness I have felt writing. So much to say. Four months of balance problems,sight,touch to many to metion. I have had CAT, MRI, Hearing,Balance blood tests In the end it was vestibular problems of which only time and some medications for symptoms is all the experts coud do. Tough going, but tough it out,loved ones keep you going. Webb sites like this are very helpful Doctors do not like to tell you they can do very little but tell you whats not wrong with you


Hey everyone! I have been reading your posts for a couple of weeks now. I started having symptoms over a month ago. I was laying down and had turned my head suddenly when I felt the room spin like crazy. I still feel like I'm off. My eyesight is not as great, I feel like the room is moving constantly just to name a few symptoms. I had to quit my new job because I couldn't concentrate. I just wish I had some answers. I hope everyone is doing well...hopefully one day this will all suddenly stop. :(


Hi El

Funny what you said about the glasses. Exactly the same thing happened to me. Although it was the guy from ENT that suggested I might need them. I said not a chance! Which was proved when I went to the eye hospital and was able to read the bottom line on the wall chart!! For me it was like.. Everything would move and swirl about the place, come in and out of focus. When I told the specialist I felt like I was trembling he finally sussed it. At the top of his voice he shouted AH HA! You have Myokymia! As if it was really exciting! I was chuffed to have some kind of explaination for my jumpy vision! On another note...Great news about the Greece trip. If I had known when I first got labs about the stress,anxiety etc I would have made it a priority to get away. Once again that's another grumble that can sit at the dr's door! You are so right. Keep your faith for yourself. IDIOTS the lot of them :)

Sandie.. Glad you've had a better week! As for the weather it is totally stinking. No Summer and straight into Winter! Oh the joy!

Hi Alan from Oz! Welcome to the site. My sister's in Sydney. How long have you had the dreaded labs then? You'll find everyone here pretty helpful :)

Hi Silvi, welcome to you too. If you've had it for about a month you might be lucky and be rid of it in the 8-12 week time frame. We all try and help each other. What ever you want to know, someone will probably know the answer :)

Hi Cathy, welcome to you too. How did you get on with your hearing and balance tests?

Maria! Where are you hiding? Long time no chat! Hope you are doing well.

Lots of love Katiexxx


Hi all. It's been a while since I've written but I've been keeping up with everyone's posts. It's going on 5 months for me but I have some good news - I am getting better. I've recently had several instances where I now can say my balance is coming back. I've also learned that my vertigo or labs/VN (never had a correct diagnosis) is actually more related to my spine. It is called cervicogenic vertigo. I've been seeing a chiropractor and he found I have a significant misalignment in my upper cervical spine. He's a specialized chiropractor (who focuses on treating ailments and all sorts of conditions by re-aligning the upper cervical spine) that I had a small fracture on my C2 vertebra and was developing osteo-arthritis. The symptoms - the ear congestion, tinnitus, subjective vertigo, aches, pains, electrical zaps is classic of nerve compression/miscommunication btw the spine and my brain.

I've only had 4 adjustments but even after the 1st one - I realized I began to breath better - I no longer felt any chest compression and my hand tremors are now non-existent. It's a slow process but day by day - I sense the improvement. The major symptoms for me are the rocking sensations, aches and tinnitus....but the doc said it will take time as my body will undergo what he calls re-tracing and self-healing. Apparently, I will tend to feel somewhat worse before I start to feel considerably better. He says the body is shifting and trying to normalize. Granted, I was a skeptic (and still am a little) but like all of you - I was sick and tired of being sick and tired. I was desperate - really. I identified this doc through an organization called NUCCA. There is also a similar one called IUCCA - no difference really - just one is national & the other international.....their protocols are virtually the same. Some of their research - but one in particular - (done by one of their docs) did an 8-year study on patients suffering w/ chronic vertigo-related symptoms due to Meniere's, labs, disembarkment syndrome, etc. All patients - 60 (I believe) became either symptom-free or showed significant improvement in their condition.

So I share this really LONG post to say - could it be that some of us have some sort of irregularity going on with our spine - yet we are only focusing on our ears. I don't know - I'm no doc but I know my doc has treated many patients who have suffered with dizziness and/or vertigo/inner ear problems....and these folks have gotten better and/or are now symptom-free. They all had the same stories like us - saw a multitude of docs, no conclusive answers, same symptoms, frustrated beyond measure and the list goes on......this offered hope (or at least for me) and my hope is that maybe this info might be of help to someone....be well everyone...you are in my thoughts and prayers....

Many hugs and blessings! T :0)


Hey guys - sorry for the last post - I realize I sounded somewhat rushed (I was - I was at work)but wanted to clarify that the study done on the 60 patients explained all 60 participants after 1-6mths of treatment showed either marked improvement or were entirely symptom-free. The chiropractor who did the study is Dr. Erin Elster. Her focus was looking at the incidence and correlation btw. upper cervical spine trauma (mild to severe) and chronic vertigo related conditions.

Like I alluded to in the last post - though I may be getting better - my major symptoms are still apparent. I wanted to believe after one adjustment - I'd be cured! (Haha...joke's on me!)However, I have to remind myself it's a process - not an event. :0) Anyway, I do believe the adjustments are helping because the ear congestion has lessened, I can feel my balance normalizing and the tinnitus is now very mild - I can barely notice it anymore (especially, at night when its the worst!)......

Thinking of you and hugs! - T :0)


Please enter your comments.I was just wondering if anyone can tell me how severe the vertigo tends to be with labyrinthitis. I'm a 23 year old male so maybe it wouldn't be so severe or I could cope better than some. Its more like things just shift slightly once in a while and my right peripheral vision is more sensitive and kind of cloudy. I also have a lot of odd sensations and pressure on the right side of the face and the ear. My right eye seems to water on occasion and the right jaw seems wound up involing ghe temple and all that. I saw an NP who said my right ear looks infected and gave me amoxicllin which doesnt seem to be doing a thing. It all started a little over 2 weeks ago I just started feeling weird, I was quite hungover as it was new years day and I had also smoked some marijuana about 20-30 minutes prior to this feeling(I has already smoked a couple ties that day prior to this). Being high definately did not help the anxiety factor which is what has bothered me the most it seems. It seemed to hit me instantly and I was weirded out and pacing around unable to come to grips and calm mylsef down. Seems the doctors are more concerned with my heart rate and anxiety than figuring out what is causing it, both when I went to the ER(a week later when the sensations and anxiety finally caused me to) and at the NP's office(a few days later), which is quite frustrating as they shrug off my symptoms. Reading about labs makes me think its a good possibility that is what has been bothering me, but i dont see to have all the tell tale signs. I can get anxiety on occasion but it usually is something i can deal with. This had me thinking I was having a stroke or something and has continued to bother me, although to a lesser extent than at first. Trying to sleep for the first week after this started was weird too. My mind would drift off and then I would have to awake(though I wasnt really asleep) because it was sucha weird feeling. So basically I was just wondering if anyone has a similar experince or can give me some insight? Also can anyone describe what nystagmus feel like? If you can even really tell it is going on. Thank you and good luck to all you dealing with this stuff.


Hi Peter. One ENT told me I had Labs (but that was never officially diagnosed)....whether it be Labs or vestibular neuronitis - the vision cloudiness, ear aches/fullness, and nystagmus are all symptoms that stem from both conditions. The two are so alike that many docs mis-diagnose. (I was also told by a neurologist that I had VN). The nystagmus feels like your eyes are jerky - close them and see if you are able to focus - if not, and if u sense some jerky/fast movements - then u are experiencing nystagmus. I have it on the right....which is my affected side.

Try not to freak out - you will get better. Labs - particularly the vertigo is not an easy thing to deal with and the anxiety is very common. Continue posting on this site as it will help u cope until u find more solid answers and are on the road to recovery. Its unfortunate that the the medical docs are so dismissive. Its clearly arrogance and fear becuz sometimes they don't know what's wrong and perhaps feel embarassed. Just keep your head up and remain strong. After 5 months I'm learning my vertigo was more related to my spine (the root cause) than my ear. But I only learned this after seeing a so many docs and having so many tests done. If you have to - be hard-headed about recovery...and keep looking for answers. You will get thru this....Be well......T :0)


Hi Katie, El and Everyone

The last 4 days have been awful again, as soon as I open my eyes in the morning I am like a pendulum rocking from side to side, I know what kind of a day I am going to have right away, The pains and sore hair and sensitivity in my head are freaking me out again, ears so sensitive I am watching the tele with subtitles and the volume on mute. Walking about the house with my hat and ear muffs on, even wearing my hat in bed, feeling like a drunk with heavy eyes again at times, feel like I am losing it again, getting very weepy and frustrated again! Still taking the SERC tablets, going to call the doctor as I dont think they are doing anything. Thought they were but now I dont know. Still waiting on the results of my MRI. The only thing thats calming me down from thinking that there is something more serious wrong in my head is coming onto this website and seeing I am not alone and not going off my head. Sorry for the drama guys but I am so sad and getting so angry with this.


Hi Peter

Welcome to the site. I'm through labs now but, when I was at my worst the room didn't spin as such. It just shook about alot. Things would come in and out of focus. I've had nystagmus and if you touch your eyelids it can feel like wasps in your eyes. Get a friend to look for you. It's so difficult to see for yourself especially when your vision is cr*p!

It is possible that you've also had some uber strong hash, that's part to blame for some of your symptoms. My flatmate used to party really hard and smoked at lot of grass. Panic attacks became almost a daily occurrance for him. Maybe just steady up a bit for now. If you do have labs you'll need to get as much fruit and vege into you as possible. Give your body a fighting chance ( I have a love affair with cigs and red wine So... I can talk!) I've been there when it comes to the asleep not asleep, trance-like state. It's blo*dy awful isn't it? Heart palpetations and the night time pacing. It's all part of it. I promise it will go away. Every time you feel the anxiety coming on look for a distraction. Phone a mate, clean the kitchen, watch a funny dvd. Anything that draws your attention away from it will help to control it. We're all rooting for you! :)

Katiexxx


Angela - no need to apologize for your anger and frustration - I was the same way. You could've called me 'Raging Bull!' It takes a toll on your body and after a while u feel like you're breaking down. Though I'm doing better these days, my symptoms still persist. This "battle" is a very unique one and only someone who has experienced it can truly empathize with what we're going thru....which is why I would never wish this on my worst enemy! Maybe we should all petition to have Oprah do a segment on one of her Dr. Oz shows. Since coming down with this - I was shocked, if not blown away, by the high prevalence of vertigo-related disorders! This site alone is sheer testament to it....just look at how many people responded to Rich's blog after his experience w/ labs.

But have you ever considered getting your spine checked out? I learned thru the chiropractor I've been seeing that the vertebra called C1 (Atlas) and C2 (Axis) are enormously important for nerve control/regulation/coordination for virtually most, if not all, of the human body.....but of particular interest to us chronic vertigo sufferers - the middle, inner, outer ear and balance centers of the brain.

You are in my prayers.....hugs, T :0)


Hi Katie,

Our cases do sound similar! I feel as though my vision is a bit jumpy but wouldn't the doc at the eye hospital have found something actually wrong with my eyes? What I mean is, how is myokmia diagnosed? Is it by me saying that my vision feels kind of jumpy and that's enough to be diagnosed or do they physically find something wrong with the eye(s) i.e. can they see them trembling or jumping or whatever?

I have my GP appointment in an hour and fingers crossed, am hoping she'll agree to sending me for an MRI and a blood test for ferritin levels.

The good news is that I managed to go to work every day last week, albeit for 3 hours only each day, and I didn't really suffer for it, other than a nasty headache each day that kind of faded after I'd left the office...on the contrary, I think it did me some good. I think the headache is down to my sinuses playing up. The air in the office is extremely dry due to the fans of all the computers and equipment blowing out hot air...this completely blocks my nose and causes me severe congestion. But anyway, it's better than the dizzies and all the other symptoms that seem to be fading away.

Well, I'd better rush before I miss my appt...stay well everyone and stay positive...I've definitely seen an improvement in my condition since the onset so don't be eaten up by negativity and frustration...however small the improvement might be, always see the glass as half full and your improvement will get bigger!

Best, El xxx


Hi everyone,

T - did you actually have any back pain before you started with this treatment and how did you actually think to go and see a chiropractor?

I suffer from a crackling sensation at the top of my neck, and this does bother me as to what it is, though I do not suffer any pain.

Angela, I don't know how long you have had this but in the early days for about 4 months I could not bear to watch tv, make a telephone call or read a magazine as it would bring on major dizziness and make me feel cr**. Even people talking to me with a loud voice would send me spinning. I loved silence! Even now I can somtimes be noise sensitive after 4 years. Serc did nothing for me and does not work for many people.

It does make you very angry that you have to suffer in this way but try and stay positive, it does get better!

Hi to all you new people, please remember this is not life threatening it it life disabling and you will get through it. Keep positive, change your unhealthy ways (Peter!!), and you will see benefits. Look on it as a wake up call!

Maria, my friend, where are you? I hope your absence is due to the fact that you are feeling better and your life is full of other stuff now!!

Katie, so glad that even though you are recovered you still find the time to come on and post here with your experiences and give advice, and make us laugh! You are a star!

Take care

Sandie xx


Hi everybody; Welcome to all the newbies! This site is a real blessing, helped me a lot. Have been on it since March. Before that for 5 months, I thought I was losing my sanity. When I realized I wasn't alone and other people had the exact same symptoms. It has been a lifeline for me since. After 15 months, I can honestly say I'm almost 100% better. Still have some off days, but so much better than last year. Of course there could still be flare-ups, but at least I know I can get through them. We are in a deep-freeze in Toronto, and normally that would make my dizzies go wild, but it hasn't. So everybody, there is light at the end of the tunnel. It just takes time, but IT WILL GET BETTER. Katie, I thought about you the other night. Went to a Robbie Burns dinner at my church. Everyone in kilts, including me in my Matheson tartan that is way too tight. Had a good time, but my goodness, the thing went on and on, with singing, dancing, bagpipes, the works. I had Haggis for the first time ever. Not bad really. But although I was tired by the end of it, my dizzies didn't bother me at all. No way could I have done that a year ago, or even 6 months ago, just felt too unwell. anyway, it was interesting. I have been to Scotland only once, am of Swiss origin. El, I didn't know you were getting married soon. All the best. You sound much better. Angela, you will feel better when you get the tests results. The waiting is hard. Let us know as soon as you get the results. Everyone, take care of yourselves. Peter I know I sound like your mother, but you shouldn't be smoking pot. It's bad for you. Especially if you have the dizzies. I gave up coffee and wine. Avoid anything that you think will aggravate it. Take care. Hugs everyone Maria


Hi El

The specialist at the eye hospital spent 15 minutes staring at my eyes through that machine and he couldn't find a thing. He said both eyes were perfect. I said you don't just wake up one day and need glasses. It takes time for them to deteriorate. He did agree with that. And people who wear glasses don't feel like their eyes are jumping, so he kept looking. Eventually he noticed that my eye-lids and the muscles around the eyes were twitching. So THAT was why my eye sight was sh*t. There absolutely HAS to be a reason why your vision jumps. Stare at yourself in the mirror or ask Zac to look for you. It's really tough to see. Sometimes you can feel them move if you touch your eyes when they're closed. My own GP and the ENT guy had never heard of Myokymia. So, says it all really! Do you feel like you are trembling slightly? That's a good indicater that you have it. The eye specialist said it's quite rare but can happen after you've suffered from any kind of vestibular condition. He said the nerves around the eyes need time to settle. But It will go away. It will also be faster if you can avoid stress and keep the anxiety at bay. And he was right because my sight is almost perfect again :) How did your appointment go?

Angela sweetie!... I so feel for you. You really need a decent doctor. Tell me, before you had this relapse you didn't do anything different than usual, did you? I know you musn't go swimming. It can totally mess up your fluid levels again. I'm sure your MRI will be clear from anything major, or they would have called you in by now. Try not to worry about it. All the stress and anxiety is just the labs, not you :)

Maria... Ah Ha the wanderer returns! Nice to hear from you! And sounding so positive too! Good lass! Must have been all that dancing and the too tight kilt. Gave you a good giggle :)

Sandie.. Like you said about your husband. The dammed Scottish are so hard to get rid of!

Lots of love everyone

Katiexxx


Hello every1.

Ok i havent been on this site for quite a while now but I have been suffering from labs for 7 months. I am doing much better now, doing things I coudnt do a couple of months ago.

I wont visit this site on a regular basis, because it is quite depressing. It is better you get out and walk, walking is the best way to heal and is the closest thing to a cure. I started walking a couple of months ago to the point my dizzies would would go through the roof but I didnt care! You have to push yourself even if it means you feel worse. With this you have to take a step back in order to move two forwards.

And to the person who said that you can never really recover from this, it gets better but wont completetly go away? well sorry my friend, you happen to be the unfortunate 0.000001 % of people who dont recover.

The key to overcoming this is keeping yourself occupied, pushing yourself, staying positive & never losing hope and most importantly patience. Also go on holiday like I did, i truly felt myself getting better out there, Im back and im feeling worse again. I live in London England. I believe that had I not lived here and instead lived anywhere else in the world, I would have not been burdened with this ailment.

Tc every1.


Sandie - I did have back pain but it was mostly in my neck and shoulders. Sometimes the pain would be so bad - or worse, so stiff - I would start having muscle spasms and weakness in my arms. I never attributed my vertigo to this nor had any idea that seeing a chiro was an option. Like most people, I took meds to ease the symptoms and just ignored it. But the discomfort went on for months at a time....w/ me repeating the same pattern of treatment. But this was over a period of a few years before the vertigo set in back in Aug of '08.

So, after speaking with my aunt's doctor back in Dec is when I decided to look into seeing a chiro. He had recommended, after assessing what my symptoms were, that I see about getting my upper cervical spine examined. He said my symptoms sounded like the CAUSE was being triggered by impinged or compressed nerves. Plus, his recommendation was based on a more W-HOLISTIC point of view. The medical docs I had seen just kept focusing on my ears but kept failing to look at other areas of my body. I was so grateful for his advice.

So, I started doing some research on my own and found the chiropractor I am seeing from an organization called NUCCA. You might want to check it out becuz I don't think that cracking sensation sounds good. I used to get that too but every once in a while. It sounds to me like there could be something going on w/ your spine. I am recovering slowly but it's a self-healing process. Look up cervicogenic vertigo, and also a study done by a Dr. Erin Elster. She's a chiro who's had a lot of success treating patients suffering from a number of chronic vertigo-related disorders (ie labs, meniere's, MAV, BPPV, etc). It was after having read her study that I decided to take action. The guy I'm presently seeing focuses only on the upper cervical region and identified that my C1 and C2 vertebra are badly misaligned. He even found a small fracture which also has caused osteo-arthritis in the area. With a medical journal, I now monitor my symptoms day to day and amazingly, every day gets better....and its only been less than a month.

You're in my prayers......T :0)


Hi all- I am so glad to see that many of you are feeling better...that keeps hope alive for all of us dizzies! I went to see a neurologist and he didn't have much more new info for me but he did give me a referral to a VRT program which I started on Friday. I am doing exercises everyday and going in once a week. My therapist said it will probably get worse before it gets better but hopes I should see improvement in 4-6 weeks.

I am just trying to take it day by day. I am still working full time but it is not easy. I shut my door on my lunch break and lay in the floor and shut my eyes. At the end of the day I am usually pretty wiped and go home and rest for the next day. I am thankful that I can function as much as I do even if it is not pleasant alot of the time. I have decided I have to start walking more, it is just so cold it makes it that much harder!

Welcome to everyone new, this place really does give encouragement and helps when you feel like there is no hope. I will keep you all updated on the VRT, I have my fingers crossed:)

Laura


Hi T

I have Scoliosis, curvature of the spine. Didnt think it had anything to do with Labs.

Katie I went swimming last night to see if it would help, went into the steam room and came out with major dizzies, had to lie down the changing room floor until it passed? Can I not swim at all? Thats the first I have been in the pool for nearly a year. I signed up just for the use of the pool, thought it would help, bummer!!!

Maria glad your better. Sandie I had this last year for about 8 months, then had a couple of months nearly back to my old self then had a relapse before Xmas.

I hate noise! I want silence!

Take care guys Angela


Hi all,

Angela, stay strong...that is really all you can do. Don't lose faith because as we all know, anger, frustration, anxiety, sadness and depression feed this beast. You are far, far stronger than IT so find a physical way to vent your anger, do not let it pent up inside you...punching a pillow is great fun, it might sound odd but it works!

Sandie, I, too, have a weird cracking kind of sensation at the top of my neck, but I believe I have had it all my life but have only noticed it since my crap began along with paying far too much attention to every crack, spot, bump and strange feeling I am experiencing. I have felt like a hypochondriac the last 4 months analysing every single little thing I am going through with a magnifying glass.

Maria, good to hear from you! You sound great! Thanks for your wishes.

Katie, I will try what you suggest but I don't know about looking in the mirror... I haven't really been able to focus on anything close up since this all began...it brings on the dizzies. You should see the state of me when I'm trying to pluck my eyebrows!!!!

As for the appointment, well, my GP refuses to send me for an MRI and in all honesty, I can kind of understand her. She says it's far too much radiation to go through considering my condition has improved since this all began and that if it was something more serious than Labs I would not be feeling better, albeit at an extremely slow pace. We did a blood test, including ferritin, and I should get those results at the end of this week. So, I will continue to stay as positive as possible and will wait for the 6-month mark. If at that stage I am not at least 90-95% better, then I will take more drastic action i.e. pay and go private without waiting for referrals.

KAM, I couldn't agree with you more. I returned to the UK from Cyprus, where I lived for the last 15 years, and since being back in London (I was born and raised here and left when I was 18) I have caught so many different viruses and bugs it's unreal and bloody frightening at the same time!

Anyway, life does go on and I guess it's up to us if we want to cry about it or fight it with everything we've got...I'm doing the latter and am feeling slightly better for it. Have been doing ok recently, had a bad day today at work with the dizzies but other than that, I can't complain.

Take care everyone, El xxx


Hi Angela - I was told I had labs too but don't ever recall being sick at any point - either w/ a cold or a sinus infection. But then again, one ENT told me I had labs and then the neurologist said I had VN. (Sigh) So - I still don't know. I only saw the chiropractor based on the advice of my aunt's doctor. Plus, I was feeling pretty low and was willing to be open to anything if it meant it could potentially help me w/ the rocking sensations/heavy-headedness and ear congestion. My anxiety was getting pretty bad. :-(

However, I did come across some material (in my early research before seeing the chiro) that scoliosis was shown to be linked to balance disturbances pertaining to vestibular and proprioceptive faculties. The info was saying that due to the general or chronic misalignment/curvature of the spine - nerve compression can sometimes express itself in the form of symptoms often related to inner ear/balance disorders. But then again, it's only what I read and I don't know if your doc or ENT identified that your labs was caused by a virus.

I still sometimes wonder if my symptoms were triggered by VL or VN......I'm ok with not knowing but the thought still lingers. T :0)


Angela...

That's so weird that I mentioned swimming and you were there last night! Weird world. I think you can do it providing you're prepared to do the middle- aged woman thing. You know.... Hair up, full face of make-up and for god sake DO NOT put your head under water! My dad's friend Felix had labs, he had been better for several months. He went swimming and ended up right back to square one. So, if you go. No splashing brats allowed near you and do a steady breast stroke only! I love to swim and I've really missed it.

El... Do not talk to me about eyebrows!!! Mine are absolutely horrific and I laughed at them today because they are now as overgrown as the garden! PHHOARHHH!!!! Sexy Me!!!

Laura.. Great to hear from you! You sound like you are doing well :)

Kam... The site isn't depressing doll. It's just far too many people all suffering put in the same place. I'm sure like anything in life, It's just the way you view it. Afterall,you associate this site with a bad experience in your life. I associate it with helping me get better and not thinking I am off my rocker. Horses for courses. Remember people are posting here from the US,Canada,OZ and all over. I agree... sunshine, a change of scenary is a huge help. But it's more about escaping the stresses and monotony of every day life that is the true issue. Anyway nice to hear from you and I'm glad you are doing well :)

Well... think it's time for a glass of vino

Love to you all Katiexxx


Hey Guys

Was at the doctor again today I went to work yesterday and someone had to drive me home, I was bouncing off all the walls, crying with pains in my head and ears and couldnt see a thing in front of me, that was the last straw yesterday at work, I have been forcing myself into work everyday since this beast came back before Xmas, they have already sent my Case to HR for recommended dismissal because of my time off sick with Labs last year, The stress I have been under to go in everyday feeling like this has been too much, getting sent home nearly every other day cause I am dizzy and all over the place. My doctor gave me a 3 week line, I have decided that I need to think about my health and myself and I had to take the line, I cant do it anymore. I have been getting no thanks for going in everyday the way I have been. Everyone can see how ill I look. They will sack me for sure now, 13 years of service means nothing. My doctor told me the MRI was clear, yes I am glad I dont have a brain tumor or anything serious but I cant beleive it didnt show anything up. Why am I getting these stabbing pains in my head, my hair is sore to touch, I feel like I have swinging brick in my head. My Ears are so sensitive to noise and it feels like someone is pushing knitting needles in them. I was hysterical crying at the doctor I told him I feel like I am living in GroundHog Day! He told me to keep taking the SERC. They dont even work, feel like the doctor does not know what to do with me.

Sorry guys I am losing it

Angela


Hi T

Can you tell me where you found the info about Scoliosis being connected to Labs as It might just help me with my Case with my Employers. The Union in my work said if I could supply evidence saying that the Labs and Scoliosis where related in some way they could not sack me because my Scoliosis is my health condition and I am covered with my Scoliosis under the Disability Discrimination Act, The Labs on the other hand is a seperate issue and they are trying to sack me with it. I am going to take my case to a Tribuniral if they dismiss me and If I had some evidence maybe it would help my case.

Thanks T

Angela


Hi T,

I'm new to this site and have had Lab for over 3 months now. I know every case is different but your symptoms sound eerily like mine.

Mine started with severe vertigo for about 1.5 days. When that subsided, I had permanent hearing loss in my left ear along with constant ringing. My balance eventually returned about 90% but I couldn't really turn my head from side to side without getting dizzy. When I tried to get off my meds the 1st time, the back of my neck would get really stiff. Now that's better.

2 weeks ago, I tried to get off my meds and now I have that rocking sensation/heavy-headedness and ear congestion in my right ear (the good ear). My ENT just told me to get straight back on my meds and to take some allergy medicine but it doesn't seem to be working. Are you still experiencing this? Did the chiropractic treatment help?

Tto everyone else suffering from this, I wish you all well and thanks for contributing to this site. It has been a huge comfort.

- CL


Hi everyone, I just thought I'd mention that after three treatments of bioresonance therapy (which is supposed to be able to isolate and eliminate viruses) I am feeling quite a bit better. I don't know if it's because of the treatment or not but thought I'd put it out there as an alternative if anyone is looking to try something else.

I went for hearing and balance tests two days ago and then back to my ENT for the results yesterday - Sandie you were right - he was useless! The tests came back normal which I'm pleased about but he just said "these things usually just resolve by themselves, if it doesn't get better you can go to a neurologist but truthfully she won't be able to give you many answers either!"

When I asked him about whether tinnitus would stop he just said he didn't know and he couldn't do anything about it anyway. I just can't believe how clueless doctors seem to be about this. I have received so much more helpful information from this website!

Anyway luckily I am feeling better because I am back home after staying with family for 5 weeks and my girls will start school next week, at least I feel able to get them there . The Australian Open is on here in Melbourne and I am going to that tonight which will be great.

All the best to you all Cathy


hi Cathy,

i've had tinnitus for over 3 months now, since the first week of Lab, and have consulted 3 different docs - ENT, otolaryngologist and an otoneurologist. they all say it gets better with time. my ringing is permanent cause i have hearing loss in one ear but you never know, yours may go away. i live in boston, ma and have access to some of the best hospitals in the world so i trust these docs are right.

my ENT recommended taking supplements for it - B Complex, Magnesium, Zinc and Lysine. i have been taking them daily for the last 2 months and noticed that the ringing has quieted. they're all amino acids that our bodies need so no harm done in trying. good luck!

thanks for the bioresonance tip.

for all those new to Lab, a drug called Famvir has worked for me. it's an antiviral. when i was on it for 2 months in a row, it helped stabilize my condition. just wanted to throw that out there in case it helps anyone.

- CL


Hi Angela. I can't believe your employer is being so insensitive!! The info I came across (which was from several sources and some chiropractor sites...can't say if they were valid or not - I only went thru them in passing) didn't actually mention any specific connections btw scoliosis and labs....just suggested that vestibular/balance disturbances can show up in scoliosis patients depending on the severity of their curvature. Is your curvature idiopathic? I kept seeing this term a lot.

Check out this one site - http://www.worldchiropracticalliance.org/tcj/2005/oct/h.htm - this one I remember and paraphrased from my last post because the article referenced research at the bottom (both from chiropractic studies and Otolaryngology publications). Maybe these can assist u. But i'll keep looking around to see what else I can find. PubMed is another good site....more scholarly. I'm SO SORRY you're having to go thru this.....is there nothing else your GP or ENT can provide in your defense? I'm pretty sure if they (ure employer) were to experience just a few hours of what you're going thru - they'd put a sock in it! :0) But keep strong, OK. I know its easier said than done but your health really is more important. I, too, in the beginning had been taking a lot of sick leave and it not only put me on the chopping block but made me think I was gonna get let go. Plus, it was even more annoying when my supvs would say: "Oh, but you look so good." How irritating! I hated it. It's horrible at the thought of having to go to work when u know the only thing u want to do is lay in bed. I sit at a computer most of the day and because I work in social services and have to do A LOT of reading (case studies/reviews) - my eyes would get so bloodshot! Whenever I closed them - the nystagmus would be so out of control! We're all rooting for you hon and you're gonna get thru this - all of us! The Universe is totally on your side!! Many hugs! T :0)


Hi CL. Welcome to the site. Not the most spectacular place to be but there's lots of kind folks willing to share tons of information. Our symptoms do sound alike - although do u get the "I'm-rocking-on-a-boat" sensation? Unlike some, I don't experience what some would call "true" vertigo. The room does not spin however, my sense of muscle/balance coordination is really off. I deal with this 24/7 except in those instances where I feel my balance normalizing....which hasn't happened in 4 mths (I've been coping w/ this for almost 5mths - feb will make it 6) Thankfully (Praise God!) I don't have any hearing loss because I don't know what I'd do! Music helps me cope.....my right side is the most affected - that is w/ the ear congestion, nystagmus and ringing. I was very skeptical at 1st about seeing a chiropractor, probably becuz I never been to one and didn't consider them "real" doctors BUT SHAME ON MOI! becuz I have been getting better under my chiropractor's care (Yeah!) Mind u - THE PROCESS IS SLOW! AND Let me say that again - IT IS SLOW! (Think snail-pace if u can) :0).....but it's given me hope and optimism. I'd rather try this than what the medical docs were suggesting....the drugs just weren't helping and in fact, were making me dangerously dependent. It could be that your symptoms are flaring becuz ure body is withdrawing (which is a good thing, I think) I quit my meds - except ibuprofen - 2 mths into it.

I'm learning a lot from my chiro and he said this was the best route. (I don't even take ibuprofen anymore.) He says these synthetic drugs will slow down my healing process. Instead, I just try to eat better (a lot of fiber and water especially) & get in light exercise (to help strengthen my muscles and release any underlying toxins - though this has been a challenge as I still get tired easily...so I'm gonna try a sauna)......

I see the chiro 2x/wk to get my adjustments and will continue for about 2-3 more months (depending on how well my symptoms let up) and then 1x/wk to ensure my spine is fully re-aligned & is maintaining/holding. But to give a clearer picture of how its been helping - I've seen a couple of major/minor improvements: i no longer suffer w/ chest compression and can take deeper breaths - my blood pressure has decreased - I developed more regularity in my bowel movements (don't mean to gross u out) - the stabbing pains in my head along w/ the headaches are gone - and the tinnitus has decreased so much to the point where I barely notice it. So, for now, I'm just monitoring how my balance responds - since this is my major issue.....by the way - read thru page 8 of the site - there were some folks (a lady I believe) who also had success in becoming symptom-free by seeing a chiropractor. Hugs - T :0)


Hi everybody,

Just suffering ANOTHER relapse here! Woke up feeling bad yesterday and went to work thinking I could manage but had to come home after three hours. I was taking massive dizzy spells and felt I couldn't stay on my feet. I work on my feet all day, no sit downs for me, so it is really tough.

Angela, I know exactly what you are going through and I also suffer terrible pains in my head that come from nowhere and I know what you mean about 'sore hair', coz I suffer from that too! I also have very sensitive ears but not all the time. Are you UK and who do you work for?

I suffer the same fears as you about being finished from my job, I have had about 10/11 months off over a period of four years, so that's a lot. Up til now they haven't said anything but I dread that one day they will and that will be me for the chop. I need to work, so it is a worry.

But, I might also add that for me the stress of actually having to work does play a huge part in the onset of dizziness etc. I think I would be a lot better if I didn't have to work because you are always thinking of whether you can manage to make it through your work day and counting the minutes til you can go home and relax!!

I also get no thanks for making the effort to go in and it doesn't matter how long you work there for or how hard you work for them they will always go with someone who is healthier than you. Try not to worry so much about it as this will 'fire' this beast. If you can't work then so be it, your health is so much more important.

Take care and try and keep positive.

Sandie xx


hi T - the only time i had true vertigo was during the initial attack. since then the only major issue i've had is with my balance being off, which improved about 6 weeks in. my ENT recommended some VRT exercises. the only one i do consistently is focus my eyes on a point on the wall (i use one of those large dot stickers you can find in the stationery dept of any store) and turn my head from side to side for 20 seconds and then up and down for another 20, all the while focusing on that same point, and increasing speed as much as i can without getting dizzy. i do it while sitting down. 5 reps per session, once in the morning and a second time at night. i found that has helped my vestibular a lot.

i've heard mixed things about chiropractors but will see if i can find a good one in my area. problem is my healthcare won't cover the entire cost so it will be $$$.

i too am afraid of becoming dependent on the famvir, but i do believe it is helping me stabilize and wouldn't be taking it otherwise. i've been experiencing the rocking-on-a-boat sensation the last few days, which was triggered by the aural fullness in my right ear. the fullness is much better today but the rocking sensation is still there. i have been back on the meds for 6 days now. my balance was at 90% before i stopped taking the meds and now it's only at about 75%. the other major reason i'm sticking to the meds is that i have permanent hearing loss in my left ear and am freaked out that my right ear could go. my ear doc has seen cases where it spread to both ears - scary thought. wish i was as strong as you in wanting to treat the symptoms naturally. you're a brave soul.

Angela - i am sorry to hear about what you're going through with the employer. that is just horrible. i hope you get better soon and stay strong.

Richard - thank you for starting this forum and for keeping it running.

Mon, Jan 26th is the a brand new year according to the Chinese calendar. it is the year of the Ox. I hope it ushers in a healthy and happy new beginning for us all. Keep well everyone!

- CL


Hello, I ran across this web site, while searching for info on Sternocleidomastiod syndrome. I went to the chiro doc this morning,and he thinks the syndomes I am having may be caused by this syndrome. I also have a appointment with my ENT next friday. Here are my symptomes fullness and numbness behind right ear, Headache above eyes, sinus pressure,tightness slight pain in right neck and shoulder area,off balance feeling, nausea,sweating, and last but not least dizziness.


I'm so glad I was able to find this site - it has been a wealth of info as well as a calm to the storm of panic my day began with. My first bout of VL was exactly this time of year (weird) 6 years ago. It was severe vertigo, constant vomiting, nausea, diarrhea & dizziness for 2 weeks which gradually dissipated over the course of another 2 weeks. I wasn't given any medication as my doctor said it would run its course. It was the worst thing I've ever experienced & fully expected to never have it again. I woke up feeling sick to my stomach & then the involuntary eye movement started! My eyes kept rolling to the left repeatedly - it's just the WEIRDEST feeling. That finally stopped after about 5 minutes & then I sat up. The room started spinning & I broke into a sweat that literally soaked my shirt in a couple of minutes. All I could think of was "Oh no! Please not again!!!" My husband read that you should try to move around so that your brain recognizes the dizziness & tries to correct itself. After about 2 hours of laying on the couch whimpering, I forced myself to get up, staggering mind you, to walk around every 20-25 mins. By 3:00pm I was surprised to find myself feeling much better. No sudden head movements yet & things are still a little fuzzy but I think I'm doing pretty good (it's now 9:30pm). I'm a little anxious about what tomorrow morning will be like though. I have a lot of headaches, though I don't take regular medications for anything, have had migraines since I was a kid, have had episodes of tinnitus & both VL attacks seem to follow the flu. I'm wondering how many people have had recurring episodes with this much time between (6 years)?


I am so glad I am not alone. I have been thinking I am crazy for several months now. (my husband thinks I am bringing this on myself!) I woke up in September with BPPV (3rd attack in 2 1/2 years). I decided to go for Vestibular Therapy. Well, this is when the SWAYING and ROCKING started in my head. I thought I as going crazy. Well, I am into THREE months and I am still swaying. I have gone to the ENT and neurologist and they don't have a clue. I cannot take it anymore. Also, the evenings are worse. When the swaying is bad, I have pressure in my head, feels like my eyes are being pulled out and my ears are full. I start off in the morning feeling fine, but as the day progresses, the swaying comes on. My doctor also prescribed Paxil at a low dose, hoping it will help with my swaying. It really hasn't. I take Xanax when the swaying is bad (calms it a bit). The neurologist said my left ear is the problem and could be a result of fluid build-up. The ENT said he didn't agree. (No one is on the same page) After reading your posts, I am going to try the vitamin route. I am also considering accupunture. I read that some of you have neck problems. My neck has been hurting so badly since my BPPV. I am happy that I am not the only one!


Hi everyone. I don't know if anyone is dealing with this but I have a very slight bump or lump just under the skin of the inside of my ear. Best way to describe it is - when I put my index finger into my ear (as if to plug it up) I feel a slight bump or raise near the canal. I noticed/felt this from back in Sept when I came down w/ the vertigo but never bothered to pay attention. Now, of course, almost 5 mths later - it's still there and noticed lately when I push on it - especially yesterday when I did it deliberately - I hear and can feel this slight bone or "crack" movement when I moved it back and forth. There was a minor hint of pain but nothing bad or severe - felt more like a pressure point....does anyone know what this is? Or is experiencing it? My left ear is fine. Do u think this could be the bones surrounding the middle ear that could be protruding or pressing against the cartilage due to the fluid build-up. I have no idea......AND also, (sorry) is anyone experiencing persistent lymph node enlargement just under their jaw. Again w/ the right - I have what feels like two nodes (somewhat close together) that just won't let up. I tried garlic, lemon, echinecea/goldenseal, vitamin c, ginger - everything and nada! I don't know if its due to localed inflammation in my right ear or if there is a "real" infection going on due to a foreign agent. Has anyone tried Acyclovir - its an antiviral drug. I'm not considering it - especially since I've come so far w/ getting my spine adjusted but was curious. These nodes are making me a bit concerned. Thanks! T :0)


CANDY OR ANYONE I know what you mean. I had a very bad night last night. I was watching tv with my hold leaning back on a pillow, I rasied my head to look down and it hit me very dizzy. My stomach felt sick and my neck was very tight. Then the burning sensation in my eyes, nose, and ears. I was shaking and sweating too. I am going to the chiro doc today. I posted a few posts back about strenocleidomastoid Syndrome. This syndrome and inner ear disorder have alot of the same sytomes. I have been to the ENT about a year and a half ago. My hearing test was fine. I took the dizzy test it was fine to, but I did not have the MRI done. I have a appointment with the Ent friday he will probably want me to have the MRI to rule out a serious problem. I hope it is the streno syndrome, because it can be fixed overtime. I will let everyone now what happens.


Hey Sandie

Feeling your pain! I am really bad again, my marshmallow feet are back and the droopy eyes and the goldfish mouth open! I have been staying with my Mum for a few days as I am that bad again I really needed her to look after me. she brought me home today as I couldnt take it anymore, shes brilliant but everything is bugging me, I told her I feel like Captain Hook in Peter Pan she has 5 bloody clocks in the house ticking at different times and I am swaying about to the sound of the clocks, I know I sound crazy, I even snapped at her because she was eating a crunchie next to me and I told her she sounded as if she was eating gravel!! I am so irratable its frightening!! I feel like I am swaying all the time the now, my ears are screaming, I cant stop crying and I know its not helping me its making me even more dizzy the more hysterical I get. Man will this thing ever go away for good. Feel like I am starting to lose it again guys! I look like a walking Zombie with Earmuffs!


Hi T. I don't have the bump inside the ear but have noticed a lymph node enlargement on my right side (which was the good side up until 2 weeks ago). The node feels inflamed and is more tender to the touch than the left side.

Acyclovir, Famciclovir, and Valacyclovir are all antiviral drugs. The one I have been taking for the last 3 months is Famciclovir (I call it Famvir for short). I do feel it helped to stabilize me....up until now. It definitely helped curb the pain and soreness in the back of my neck.

2 weeks ago, I stopped taking the Famvir for 4 days straight and now my right side is affected (feeling of fullness and dizzier than usual, balance is also more off). I went right back on the Famvir but it doesn't seem to be alleaviating the symptoms this time. Then again, it's only been 1 week since I got back on.

Went to see 2nd Otolaryngologist today...he said I may have Meniere's since the good ear is now problematic!! He's got me on a megadose of the Prednisone (steroids) and a diuretic for the next 17 days. I'm trying to stay calm but can feel some of the anxiety coming on again.

- CL


Hi everyone, Thanks CL for the advice with the tinnitus. I was interested when I bought the lysine that it said it is for helping cold sores - I have read several times that the herpes virus is possibly the one (or one of the ones) that can cause labs? It's interesting also that at my bioresonance treatment that the practitioner found the herpes virus (I have always been prone to cold sores) and was treating me for that. I have been reading through several of the archives to try to find some reassurance - I am feeling much better over the last few weeks and functioning fairly close to normal, just trying not to overdo it, but some of the symptoms still bother me - I have had palpitations constantly for the last 24 hours or so - which have been there on and off since the labs started 3 months ago. I don't normally feel particularly anxious, but when they start it makes me anxious! Does anyone else have this on a regular basis? Also the tingling and numbness are very disconcerting...

Cathy


Hi everyone - I was searching the Net last night looking for natural/home remedies that might help relieve the ear pressure on my right ear....and I came across some info on a medical device called the 'Ear-Popper' - its an FDA approved instrument that restores/equalizes air pressure in the ear. It's mainly good for ear infections and Eustachian tube dysfunction....but I was thinking since most of us here deal with the ear fluid/pressure build-up....it might help relieve either one (if not both) of these symptoms and (if my thinking is right) reduce the amount of middle ear pressure which in turn might help reduce the 'domino effect' pressure on the inner ear. You can only get it thru an Rx but I'm really considering it. It doesn't contain any drugs and the mechanism is somewhat equivalent to pinching your nose and swallowing - this maneuver helps to open up the eustachian tube so air can flow thru more readily to the middle ear.....and fluid be drained out. I tried this technique but the congestion is still there. (Now I'm starting to think this might explain the stubborn lymph nodes under my right jaw - ie. poor drainage) and if I can reduce this pressure - my inner ear nerves could stand a chance at actually stabilizing. What do u think? I had my 8th adjustment last night and I feel more and more symptom-relieved (and in some instances, symptom-free) and so.....has anyone ever used this device? Thanks kindly - T. :0)


Hi Sandie

Sorry to hear you've had another run-in with the dreaded dizzies. Has there been any improvement since your last post? It's a real sod isn't it?! Do a popeye and start going OTT with the spinach! Try and get those ferritin levels up a bit quicker!

El sweetie.. How are you? Did you manage to work out what's going on with your eyes?

Maria and Angela.. How are you girls doing?

Welcome... Cathy, CL, Tiffany, Candy and Reen! You'll find everyone here will try and help you as much as they can :)

Lots of love

Katiexxx


Hi Katie

I am not too good am afraid, I had a better day yesterday I could see clearly and I felt the mask had lifted from my eyes and face, I did a few washings and made the Tea and thought I feel better today but last night before I went to bed I felt a bit wierded out again and I woke in the middle of the night with a noise that sent me rocking back and forth like a crazy person again!! So I feel rubbish again today all dizzy and droopy eyed again, I look awful. I am so frustrated with it!! I keep calling everyone up telling them I feel better today then the next day I am back looking like something out Wind Flew Over The Cuckoo's Nest!! AAAARRRRGGGGHHHH!! Sorry thats just how I feel, like I am going mental!

x


Hiya Katie,

Hope you are well!!!

I haven't managed to work out nowt! ;-) My blood test results came back and something is wrong as my GP wants to see me, but non-urgent, so I'm not too bothered about that. My eyes are still slightly 'off' but I am not bothering anymore. I am managing to work half-days no problem, am generally becoming more active in all areas of my life and am thinking about my 'condition' less and less...my symptoms are all still there. I know something is wrong with me as I live through each day in my body but I don't know what and the doctors are all clueless so I just don't see the point in going nuts trying to figure it out anymore.

If it was powerful enough to kill me my condition would be worsening and I'm sure I wouldn't be able to do everything I do so it doesn't deserve all the attention it has been getting.

I've starting taking Oil of Oregano daily - very powerful natural stuff and am not feeling too bad.

Anyway, I'm sure I'll have a bad day soon enough which will get me all bothered and flustered but until then, I am fighting this crap all the way!

Stay well everyone and do not give in to it!

Best, El xxx


Hi all, I went to the ENT today, he wants me to go to a Neurologist. He did not even look in my ears or nothing. Now I remember way I have not been in 1 and a half years. I am however getting a CT scan. Thay did another hearing test today and my hearing is still good. My chiropacter really beleives it is the sterno sydrome plus my neck Xray looks like I have whiplash. I hope everyone is doing better today.


Hi everyone, My fiance is suffering from LABS and I didn't realize it until she emailed me this site. She's been complaining for months now about being dizzy, tired, nauseous, etc. I didn't take it as serious as I should've. I told her that it was her diet and the lack of sleep she'd been getting. My question to everyone else is how can I help her with this problem ? It's affected our relationship tremendously. I read # 165 from Heather on 6/26/07 and there were many similarities. I love her so much and I just want to be able to support her during these tough times. Any help would be a appreciated.


Hi Bryan

What a sweetheart you are trying to help your fiance! Firstly try not to feel guilty for not realising how unwell she's been. We all look more or less normal, so generally speaking other people would never notice!

I got labs last May (Which has now gone) Yipee!!! Now, this is something I've not told anyone on this site... 3 weeks into labyrinthitis my boyfriend of of two and half years ditched me. I hadn't been diagnosed at the time and he thought I'd just turned into a self-obsessed c*w. I was then made redundant from work and lost my flat:( I now find myself living with my parents at 29! One day he wanted to marry me and the next, he hated my guts. To this day he has no idea about what really happened. I have to tell you. It nearly killed me. I've never had to dig so deep and I've never spoke about it here before because I still find it painful.

I absolutely promise your fiance is the same lovely, girl you fell in love with. It's just labs causes obsessional thought patterns,anxiety, confusion,memory loss and my god does it make you snappy and bitchy! It's not her it's just your vestibular system is wired to your nervous system and that's the reason why she's not herself.

The best advice I can give is to listen to her. Be understanding, tolerant, and if you can do anything that will make her laugh, cheer her up etc.. that will be a great help. It's really difficult to nail labs if you are unhappy. Do lots of fun things and she will get better faster. You will get her back at the end of this :)

All the luck in the world

Katiexxx


Hi Bryan

Sorry to hear that your fiance is suffering this stuff.

What you can do for her is be there to listen and believe her when she tells you it is bad because it is!! It is one of the worst things you can actually suffer from. No, it is not life threatening but in the early days it feels like it is. I would much rather suffer from physical pain every day than suffer this terrible thing.

I don't know how I would have gotten through this without my husband by my side, it does make a world of difference to have someone there that really does care about you because believe me there are plenty out there who do not(i.e. employers). Is she working at the moment?

Get her to change her diet and cut out sugar and refined foods and take her out for plenty of walks in the fresh air. This is really good for getting the brain to compensate for the dodgy signals received from the inner ear. Also, there are plenty of vestibular exercises she can try which will help.

Stick with her Bryan, give her your full support because she needs you and you may need her one day!! Take care. Sandie x


Hey everybody- How is everyone doing? Hanging in over here. I had about 2 weeks of feeling about 80% and then this weekend I was like a zombie. The dr has put me on predisone so I don't know if it is side effects from the meds or if it is the labs. When you have a really bad day it makes you appreciate your 80% days that much more. I am still doing my VRT exercises, it has been about 2 weeks and they said it would probably take 4-6 to notice a difference. I am just trying to do them everyday even if I feel bad. I think the key is to stay consistent with it.

Katie- When you were getting over your labs were you going for longer periods with good days with an ocassional bad day? Or did it just start to taper off gradually? I swear I am trying to be patient I am just so looking forward to a day of normalcy.

I hope everyone else is feeling better and having a good day.

Laura


Hi Brian, I think the worst thing about VL is that it brings on a huge amount of anxiety as all sufferers are aware something is wrong with their bodies but are unsure when symptoms will flare up and feel helpless in that they can't do much about it.

I think the best thing you can do for your fiancee is to support her as much as you can. Be there if she needs a shoulder to cry on and listen if she wants to vent. Most importantly, stay positive.

All - I've had that full feeling in my right ear for the last 3-4 weeks. It feels constantly like it needs to be popped but when I try, it doesn't help. For those who are suffering or have struggled with it, can I ask for how long? Did it affect just one ear or both? Did your hearing seem smothered?

Thanks, CL


Hi everyone: Nice to hear from all the newbies. The reason I haven't posted in so long, is that my computer went bye bye after 7 years, so I had to shop around for a new one. So you know what that means, lots of running around, lots of big stores. But we got one and it seems to work okay. The big stores hardly bothered me at all, first time in 16 months! Am now getting a cold, so a little dizzy but so far no nausea. We have had non-stop snow and cold weather here and everyone is fed up. Bryan, you sound like a really nice guy, trying to support your fiance. Maybe you should try to get her to see a specialist, an ENT and try to get some testing done. MRI, balance tests. It would help her and you to know what the problem is.

Katie, I am doing much better, but I feel when I get really tired, it starts bothering me again. I was dizzy on the way to the dentist on the subway, a reminder that it's still lurking. But like you El, I'm thinking about it less and less. Am hoping this cold doesn't set it off, but I will have to put up with it if it does. Sandie, gosh, it's been so long for you, I sure hope you have recovered from your flare-up. I know how disappointing it must be for you, after having such a good run. You sure learn to live one day at a time with this condition. Everyone else, you are not alone. And it does get better! Love Maria


Hi Laura

For me it was a slow, drawn out process. I so wish I could say, I woke up one morning and it was gone - whisked away by fairies in the night! If only :) But slowly the headaches, spongey head, marshmallow feet and brain fog started to lift. Some days I would freak out and feel worse and others I felt as if I was getting there. In the end I was 100% apart from my jumpy eyes that added another 5 months to it all. But my god who cares! I'm just so grateful to be rid of it. I did do gaze stabilization exercises and spun about alot, dancing about the place like a mad woman! I juggled as well - hard work on the eyes but it helped :) Don't worry about being patient -be determined.

Maria.. Nice to hear from you! And armed with new computer too!! Good stuff :) I think being tired is part of the recovery process. I know I'm more tired now than I was before the labs. I think it takes along time to build your core strength up again. Just keep going with the healthy eating and the exercise and your strength will return.

CL.. I'm pretty certain it was my left ear that was dodgy. Although when I eventually went for hearing tests they came back normal. Which I found strange because whenever I would sit with friends and they were talking, I could hardly make out a word. It was like wearing ear muffs. For me that stage lasted 4 months. But there's no reason you won't be lucky and get rid of it much faster:)

El sweetie... How did you get on with your blood test?

Angela, are you any better this week?

Lots of love everyone

Katiexxx


Oh Katie,

I am sorry to hear that your boyfriend dumped you because of this, but babe you are better off without him if he didn't care enough to stay. It just goes to show how strong your character is because none of us would have guessed - you always sound so happy! Let's face it Katie if you can get through all that feeling the way you did then you can get through ANYTHING!!! You are one tough cookie. Over the years I have suffered, I have heard of many partners not being able to cope and doing a runner. Just not fair is it?

Anyway, I got my ferritin results and I have gone up by 12 points, I am now at 22! It's taken me nearly 5 months but I suppose I knew it would never be easy. When you think the optimum is 138 I have a fair way to go. But, hey at least I am going in the right direction. No feeling better as yet and I am still sooo tired. But, people who I spoken to say that when their levels reached about 30 they would start to feel better, so maybe in another 3 months or so!!

I am still off work but I am feeling better, though I have been a bit dizzy today.

Take care everyone

Sandie x


Hi Katie

You have been through the mill eh? Got a bit upset when reading your last post.

I am not too bad today, been up and down like a yo-yo every day this week. Got appointment through for Physio at the hospital for VRT, went yesterday and it was a complete waste of time. She asked me 40 thousand questions, stupid questions like What makes you feel Dizzy? and What do want to get out of coming here? What makes the dizziness go away? Hello??? Honestly I give up!! I took a dizzy turn when I was with her and she looked at me with a horrified look and said Ok lets leave it here today. So she never touched me just sent me away with another appointment. Got another appointment with the ENT on the 16th Feb. Not counting my chickens on getting much from him again either. Going back to the doctor next Wednesday for another sick line, so my work will be best pleased NOT!! I feel like I am turning into a mini female version of Victor Meldrew!!! Moan Moan Moan!!!


Hiya Katie,

It only took him 3 weeks to run away, eh? Well, I hope you know how lucky you are that he did!!! You sure as sh*t do not need anybody like that in your life...nobody does! Life is hard enough as it is. It is sad, no doubt, but what goes around comes around...I strongly believe that! You are now well and continuing with life, and you sound like such a character :-) and at the end of the day, I am sure all of this has made you that much stronger so don't dwell on it...he does not sound one bit worthy of that!

I'm going for my blood test results tomorrow...thank God they were non-urgent, honestly, this NHS is something else!

I'm doing much the same...am still managing to work half days and am coping okay with the tube and bus everyday so it can't be bad :-) I've had a cold for the past week which has been trying to knock me down but I am taking super strength echinacea and oil of oregano and it seems to be fading away!

I'll let you know about my results tomorrow!

Best, El xxx


Hi El, Sandie, and Angela:)

What a bunch of sweeties you all are. Thanks x Bryan's post just hit a nerve.. Ended up being confession time for me! Haha. I know I always sounded happy, right from the start. You see... That sh*t bag EX of mine took everything I had. My heart, my job, my flat and even my health. There was no way he was taking my humour as well. After all it's the best and only known cure for despair. It's now nothing more than a horrid memory, and like you El I believe in the karma thing!! If not maybe voodoo is the way forward?! What do ya reckon?!

Sandie great news on the ferritin levels. My god progress. At last!!. Bravo darling and keep up the good work :)

Angela... That specialist of yours wasn't too special was she?! I bet she sent you away to buy her some time to read up about labs. If she seems more knowledgeable next time, that's what she's been up to!!

Thanks girls you're all fabulous :)

Katiexxx

[I'm pretty sure that we all think that you're fabulous too - Rich]


Hey Katie- I think that is what freaks me out the most is when I am starting to see some improvement and then just have a few days where I hit the wall. It is devastating, it makes you feel like you are back at square one and may never end. But thank you so much for your words, they really do lift me up and make me feel like I can come out on the other. As for the guy, obviously you are better without him, we all love you here! You have a great personality and are quite a fighter.

How long did you do the gaze stabilization, I am at the end of my third week and it still makes me pretty dizzy but I am making myself do it everyday. I need to start walking more, I know you said you walked yourself silly. It has been like 12 degrees and snowing here for the past week so it is hard to want to walk in that:(

I hope everyone is keeping their heads up getting better.

Laura


Hi everyone, Laura - I can relate so much to what you said - I was feeling fairly close to normal and then the last few days I feel like I'm constantly on a boat not to mention the nausea. And to know that I can't go to a doctor because they can't help is really hard. I am so sick of this! Rich - thanks so much for this website. I am finding it a real lifeline. Cathy


Hi everyone: Sorry some of you are still feeling down. Laura I know all about the ups and downs. Mine went on for 14 months and it's only recently that I'm feeling back to my old self. I still watch it though, I think fatigue can bring it on. Katie, gosh you never mentioned it before about your boyfriend, and we have both been posting for months. (I'm going on a year). After 3 weeks! You deserve so much better sweetie, the guy has absolutely no staying power. You can be thankful you didn't end up with him, because marriage is an up and down thing.My husband was sick for 6 years before he died. It was tough, but hey, that's life! Keep the faith everyone. IT DOES GET BETTER! Just has to run its course, but what a pain when you have it. love Maria


Katie - You sound like you're in a much better place now. I'm sure your Ex will get what he deserves.

I keep this poem in my wallet and read it on the really bad days. Cheesy as it sounds, I draw strength from it and hope it does the same for you. After a while

After a while you learn the subtle difference Between holding a hand and chaining a soul,

And you learn that love doesn't mean leaning And company doesn't mean security,

And you begin to learn that kisses aren't contracts And presents aren't promises

And you begin to accept your defeats With your head up and your eyes open,

With the grace of a woman, Not the grief of a child

And you learn to build all your roads on today, Because tomorrow's ground is too uncertain for plans and futures have a way of falling down in mid-flight.

After awhile you learn that even sunshine Burns if you get too much

So you plant your own garden and decorate your own soul, In stead of waiting for someone to bring you flowers

And you learn that you really can endure... That you really are strong And you really do have worth, and you learn and learn... With every good bye you learn.

Veronica Shoffstall 1971


Hi cant believe i have come across this website. My story starts about five years ago when out of the blue i had a almost electric bolt that went from my neck in to my head and left me with a headache and wooliness in my head, this happened again a few days later and was very dizzy, and nauseated,neck pain got a real fright went to A&E where they admitted me, had CT, MRI and lumber puncture done, all clear was told it was a virus!!

over the years these symptoms have returned time and time again, lasting weeks and then improving slowly, however often feel like i am on a boat, particularly if i have a headache which i seem to get much more of. Did not go to docs as was told i was fine.. Have just recently had a bad throat and ear virus over christmas and have all the symptoms back again, very nauseated my dizziness is more a swaying feeling inside, neck pain i also have had afew electric like sensations in my neck, anybody had this? i work in the medical profession so i was lucky enough to see an ENT doc last week and he said i have labs, have been given cinnarizine and to go for balance tests? what are these? I really thought all these years i was going off my head and was starting to think i was a hypochondriac, making all these symptoms up!! literally in my head!!Finding this web site and reading all your stories make me feel much less isolated and to everyone else i look well!!

Ruthx


Hi Ruth

And welcome to the site. I too get electric shock sensations in my head, always up the left hand side above my ears. These are terrfying at first but I have had so many I know now that they can't be anything too serious! I get a sharp pain after it happens but that lasts only seconds and then I just feel yukky for an hour or so.

The swaying feeling is definitely part of this as I suffer from that too. Worst time for me is when I have to wait in a queue in the supermarket or somewhere like that and I can't control myself. This still happens now after four years.

Cinnarizine is a antihistamine which is supposed to help with dizziness and balance problems. Let us know if it does help you! The tests I had when I went to ENT were very basic, I had a pressure test to measure the pressure in my ears, the goggle tests where you watch the red dot on the screen and I was offered the caloric test where they pour water into your ears but I refused this as I really was very poorly at the time and suffering from anxiety. There are lots of other tests they can do but I was never offered any. I have always said my visits to the ENT were a waste of time. At the end of it all we all get the same exercises to do which you can get from the internet. Maybe if these were available at the GPs surgery we would be able to start them straight away and not three months down the line when you finally get to the ENT!!

Sorry to vent like this Ruth, but it gets me so mad!

Anyway, any further questions please ask.

Take care

Sandie x


Hello Everyone!

CL.. Thank you posting such a lovely poem :)I think it rather nailed the situation! How are you getting on? I hope you are doing well :)

Laura.. I did the gaze stabilization exercises for a few weeks, then I scived off for a few weeks, then went back to them! So a bit all over the place really! As for the snow, I know what you mean. It's a total white-out here. But I love it. It's just magic. So get the hat and boots on girl and walk anyway! :)

I know I didn't say Maria, but somethings and some people get more airplay than they deserve and like you so wisely said; Things don't always happen to other people, so stuff it! It's so easy to live in the past or in the future and so hard just to live in the now. But 'now' is all any of us really have:)

Ruth... Welcome to the site sweetie. I had the electric shock sensations, like hot wire snapping in your neck - Horrible. So you're not alone there. I'm afraid my balance tests were a total waste of time. He just gave me a shove, made me touch my nose etc. It will probably depend on how good your nearest ENT are, oh and expect hearing tests too.

Rich... Thanks, you're a star :)

Cheers all

Katiexxx


Thanks Katie for your kind welcome i am a fellow scot! Thought i was having quite a good day today nausea seemed to okay and the boat was not too bad, but by early evening out of the blue my neck started to ache back of head very tight and boat was rocking bad. Why does it just creep up on you like this?

I am due to fly long haul on wednesday and very anxious about it any tips to minimise symptoms?

Did anyone think that there must be something more sinister wrong with them? do you think anxiety causes this, i used to be very level headed, where has that gone!!

Sorry to rant....

Ruthx


Hi Sandie Thank you for your support, it is really horrible this, i feel i am back 5 years again, cant believe the anxiety, i feel an emotional wreck, my poor family!!!

My neck aches by end of the day and get a real pressure headache at the back of my head,i have to lie down, is this just anxiety??

Too early to comment on cinnarazine, think helps with nausea, already had hearing tests which were normal, but can assure you my right ear feels anything but normal..... I think you are right about ENT, it depends who you see.The hospital i work in has a specified "dizzy" clinic so he seems fairly clued up on it but only time will tell eh..

I am ranting now, thanks again, it feels better to talk about it

Ruthx


Hello everyone and welcome to all newcomers!!!

I've always said that welcoming someone to this site is not a good thing as it means they are suffering, but truth be told, this site works miracles when you are going through this crap! I know it has helped me an endless amount...and still does....so thanks to you all!

Katie, voodoo sounds mighty fine to me ;-) aahh, if only it was that simple to make people pay!

Anyway, back to my bloodtests...apparently I am borderline anaemic, so the GP says. I had a full blood count back in September when it all began and my iron was just very slightly below normal...but it seems to have dropped more since then. The GP just told me to take multi-vitamins that give the RDA of iron and calcium for several months after which I will go back for another blood test. I also have a third appointment with the ENT guy in March but am definitely not holding my breath for that!

Other than that I am fine according to my blood so that's cool.

Going back to work part time has really helped me...I have seen an improvement the last month...nothing drastic but an improvement nonetheless, so I am truly grateful for that!

So, I definitely do not have a serious case of Labs...when I read over some stories here I thank my lucky stars for having what I have and not the harsher symptoms, though it doesn't make it easier...it does however make me more positive, which helps a lot. I do seem to be making very slow progress but at least it's progress.

So keep fighting all, Best, El xxx


hi katie. thanks for asking. my right ear is stabilizing - that clogged sensation has almost gone away. i still get a bit of the rocking-the-boat and a bit of dizziness but overall i am feeling much better. for the last 2 weeks, my docs put me on a megadose of prednisone (steroids to treat inflammation) and a diuretic (to reduce fluid retention), in addition to the famvir (antiviral). that is a lot of meds but they are working. i will stop the prednisone next week but the diuretic and famvir are long term. they seem to be stabilizing me. they certainly help alleviate some of the anxiety because i know what to expect when i wake up every morning.

ruth - sorry to hear you are having a rough patch. in addition to the meds, here's some more things that worked for me: i take these supplements daily - magnesium, B complex, lysine and zinc. try to stay active if you can. i went back to work full-time after 3 months even though i still get fatigued easily. i take public transportation everywhere - walking around and being in the fresh air clears my head. also, try anything that relaxes you. i used to take nightly baths right before bedtime and splurged on candles, scents, lotions, etc.

i had horrible pain in the back of my neck during the first 2 months...to the point where it affected my sleep. i invested in a Tempurpedic pillow (got a low end one for $70) but it has made all the difference in the world.

the balance tests didn't really do anything. they just tell your ENT how weaker you are on one side vs. the other. VRT and the gaze stabilizing exercises are great.

i have to fly in march and april for some work related trips. it will be my first time on a plane since Labs so i am anxious to see how i fare. can you let me know how it goes with your trip? i seem to get mixed answers from my doctors when i ask about flying. thanks and good luck!

to everyone else, hope you are doing better.


Hey everyone! After having dealt with Labs for over 2 months I noticed a huge improvement. I take one 60 mg Ginkgo Biloba tablet every other day. On the days I'm not taking the Ginkgo, I take my multivitamins. I started noticing a difference ever since I started doing this. I can honestly say I feel 80% better. I pray it continues to improve with time. I hope everyone is doing better. Stay positive! :)


Hi El

Did you get your ferritin levels checked and if so, what was your level? I am asking this because you say that you are anaemic now. I am NOT anaemic in the sense that my blood haemoglobin levels are fine. It is my back up reserves that are not fine (i.e. ferritin), and the lack of ferritin is what causes the dizziness and a host of other symptoms. At the moment I am still not sure whether it is my lack of ferritin or my ears that are causing my problems but I am hoping with all my heart that it is the ferritin as at least I know that one day I will be good again. It could take me up to two years to replace my supplies.

I might add that actually being anaemic where it can be detected in your haemoglobin, is the final stage, you usually get low in ferritin first. Doctors usually don't test your ferritin because they haven't got a bloody clue about it all!!!

Look on the healthboards (link at the top of this board) and go to the anaemia page and you will see what I mean.

Sandie x


Hi Ruth, I know exactly what you mean about worrying about something sinister - but getting tested has helped me to know that its nothing life threatening.I have had CT scan, MRI, blood tests, hearing and balance tests and know everything is normal - it still doesn't make it easier to live with this though! I am still quite anxious a lot of the time. As my husband says, it's not life threatening but it is lifestyle threatening.

With regard to flying, I flew from Australia to New Zealand about a month ago and had no trouble with my ears. I was possibly a bit more sensitive to turbulence etc but it was okay.

I went to a new GP yesterday (had lost faith in the other one) and was so pleased I did - I went because I was worrying about constant palpitations and he checked me out and all is normal - he was very reassuring but told me I could have a heart monitor for 24 hours if I wanted to be sure. So it was nice to feel supported and reassured. He seemed more concerned about the vertigo etc and worried that it might not go away and that I just have to learn to live within my limitations! I have not been officially diagnosed with anything - apart from an 'inner ear virus' by my previous GP - but all my symptoms fit with labs - he has got me worried that this will be permanent! I know that a lot of GP's just don't seem to know much so I'm really hoping he is just not well informed. He was very conscious of the fact that this can lead to depression etc and made sure to tell me to come and see him if it was becoming too much of a problem.

I have also found a VRT specialist in Melbourne who is also a neurologist so am thinking of getting an appointment with her - hopefully she would know her stuff.

All the best to everyone Cathy


Hi cathy thank you so much for your reassuring words. I find i am fine one minute then next minute i am really anxious sometimes to the point that i feel i am going to pass out, but never do!! i think at my next appointment i will ask about an MRI, even though i had one five years ago, you always think they missed something, paranoid or what!! Are you getting better now? and how long have you suffered?

Does anyone feel really tired as the day goes on and gets neck ache and feel pressure in their head by evening?

Sandie, that is so interesting about your ferritin levels.i have had a little "lady problem" and have had these checked about ayear ago and my level was only 4!! It did rise slowly with iron to about 25 but has recently dropped to 10 again so had to up my iron, maybe that is why i feel so bad too??? Are you getting better now too?

I just want to say thanks to everyone on this site who have answered my endless questions and fears. it is nice to speak to people in the same boat ( pardon the pun!!)

I have to get on the plane tomorrow, and very anxious, will let you know how i get on...

Take care all Ruth x


Hi all-

Welcome to all you newbies, I hope you find some relief and encouragement here.

Ruth-I can def. relate to the electric sparks feeling, I always say I feel like my head is plugged up to a power source and I am being charged. It is so uncomfortable. It comes and goes for me so hopefully it wont stick around too long for you.

CL-It sounds like we are on almost the same medications. I am also on a diuretic and I just got off a super dose of steroids. I reacted very badly to the steroids having to go to the ER for severe muscle spasms in my legs. Then they have made me feel like one big crazy mess making my dizziness spin out of control. I am glad it seems to be working for you though! I can't wait til these steroids get out of my system!

El- You sound like you are starting to improve! I am glad things are starting to look up for you:)

Katie- I am gonna start trying to walk it out no matter the weather!!!

Have a great day everyone, we gotta hang in there:)

Laura


Hi Sandie,

Good question...well, my GP told me I am borderline anaemic as well as suffering from Labs.

I will give her a call tomorrow to check if my ferritin levels were counted and if not, I will get her to send me for another blood test.

All the best, El xxx


Hi all - glad to hear everyone's making progress or just being pro-active! That's fantastic! Unfortunately, I'm not doing so great but back on the road again looking for more answers. I ended my chiropractic treatments because I started developing newer and more debilitating symptoms. I actually was getting better @ the beginning of it but somewhere around the 6th and 7th adjustment - I wasn't feeling any better. Saw my GP & he advised me to stop. He is referring me for an MRI of the spine. I've been experiencing a lot of head pressure - my right ear is even more congested (+ constantly filled w/ fluid) & my coordination & balance feel awful.....

thank God for family & friends - w/o them i don't know what i'd do. i'm going to take 3 weeks off from work (maybe even more) to focus on getting better. Gonna start my VRT again - and get in some light exercising.....i'm so tired!!! I pray continually for everyone's full recovery. Hugs - T


Hi Ruth

Hope your plane journey goes ok. Regarding the ferritin, the chances are that your low level is causing all your problems. Anxiety is also one of the symptoms, though this is true with ear problems too. It's a nightmare not really knowing what is going on and what is really causing your problems. I would say though, that your ferritin needs to be much higher than you are now to get rid of the symptoms. I have been talking to a couple of ladies and one said that she started to feel better at 30 and another at 50 so we still have a long way to go to reach that. Mine now stands at 22. It takes years and years for your iron stores to deplete so its not going to replenish in a matter of weeks, it can take up to two years. I really want to see mine at about 80 then I will be happy!! And, no I don't feel any better as yet but fingers crossed I will some time soon. Mind you my periods were all over the place last year, sometimes 50+ days in between periods, making me hink I was starting menopause, (I'm 48), but now they are like clockwork again, so maybe my body was starting to 'break down', with my levels being so low, food for thought!

T- so sorry to hear that the chiropractic sessions did not work for you. That's what this things like, you get so positive and then wham -you are back to square one. It is so bloody frustrating.

I am just coming out of another relapse, hopefully I will get back to work next week. Went shopping this morning for the weekly shop and I wasn't too bad. You all know what it's like in these supermarkets, kids squealing (cos they don't just cry anymore do they!), tannoys blasting, c*** music playing and just the noise and general hustle bustle, it's enough to send a perfectly healthy person mad! My husband cannot stand the places and there's nothing wrong with him. Me, personally, before this experience with dizziness etc, I was a shopaholic. Not now though!

Take care everyone

Sandie x


Hello all,

Sandie, I spoke with my GP today who said my ferritin levels were not checked but that she intends to check them in 3 months from my last blood test...for the next 3 months I will be taking supplements daily. She said there's no point in testing ferritin as it will be low, based on my iron count being low.?.?.?. She sounded as though she knew what she was talking about but please let me have your opinion on what she said as I tend not to trust doctors anymore.

On another note, I came down with a very nasty flu-like cold yesterday afternoon which kept me home from work today and I am feeling absolutely awful...a head full of pressure, blocked nose, painful sinuses, sore throat, aching bones...AND...the dizzies have re-appeared... but not as bad as I thought they would be, so I'm thankful for that. I took a Lemsip Max Flu drink as soon as the symptoms began, and another before going to sleep and woke up this morning with rashes on my arms and legs and burning hot red patches on my skin!!! It turns out I am experiencing an allergic reaction and was told to stop the lemsip immediately!

I cannot believe it....I am trying and doing a good job of recovering from labs (slowly but surely) and get hit with a nasty cold that brings on the dizzies...I take meds to fight the cold and end up having an allergic reaction to them...and believe it or not, I found myself laughing out loud about it several times today!

Well, just had the need to vent...stay well everybody and keep smiling...no matter what!

Best, El xxx


Hi Ruth, I hope the flying went okay. In answer to your question it has been about four months for me - I know that's not long at all compared to other people here. I am definitely improving - I have those ups and downs that everyone seems to have. Am hoping that it's just a slow recovery and that it will be gone soon!

T - I am really sorry that the chiropractic treatment didn't work out. I was reading your posts with a lot of interest. Hope you are feeling better soon.

Cathy


i have just found out that i have bppv after a 5 month bout with labs i do not have nerve damage or hearing problems. its been about 6 months with the bppv and if anyone who has dealt with this if they could answer a few questions to the best of their ability that would be great they want me to do some excercises epley,brant darof, but is this all i should be doing should i be trying to make myself dizzy other ways or will doing to much bring back the extreme hellish dizzy (the one you cant work on)

and if i keep doing the exercises everyday even after its gone will this help or stop it from coming back

should i give up the booze even after its gone

should i give up yoga after its gone as well


Hi Everyone

Well I went back to the ENT consultant today and he looked at me and said he was urgently sending me to see the Neurologist, went onto saying my MRI was clear which I already knew as my GP told me, basically that was it, in other words He aint got a clue!! Sending me onto someone else, also he said the physio would not see me for VRT treatment as I had an assessment with the physio prior to my appointment with the consultant and she said she could not help me and would not see me again. Thats now the 5th time I have been to the ENT Specialist, Specialist my back side he could not answer any of my questions I had written down to ask him. I came out deflated and upset, feel like I am banging my head against a brick wall, I aint going to get my hopes built up with the Neurologist. I feel like I dont know where to turn now.

(T)I asked the ENT consultant today about Scoliosis and Inner Ear disorders, I printed some stuff off the net, he glanced at it and said Scoliosis causes dizziness and then he changed the subject and told me to go home and rest. I dont know where to turn now with it all to be honest. My Employers are not happy my doctor signed me off for another 4 weeks, My employers are calling me every week same time for a update on my illness, its really starting to stress me out and I am feeling pressured every time they call me. Also got diagnosed with IBS this week, always had problems with that but even more so the past 4 months or so my stomach is swollen to the point I really look 5 months pregnant and the pains in my groin area are so bad, I put it down to swollen lymph nodes because of the illness and being so run down all the time, they say stress makes it worse, well I am defo stressed to the Max right now and its making the rocking sensation in my head 10 times worse, so more medication and just another little thing to add to the list. I am really fed up! I am turning into a grouchy,angry little person and I hate it. I feel so sad all the time. :-(

Take Care Everyone Angela x


Hi Everyone :)

John... Page 9, posted July, you'll find Gaze stabilization exercises and Page 6, comment number 62 has VRT turning exercises. I did't have any ear/nerve damage caused by labs and I drank plenty of red wine through the whole cr*p experience. So in my opinion you can drink ( Although I would leave the stronger stuff alone!) I'm afraid with labs you can never be certain about it coming back or how long it will take to go. I think doing the yoga is a great move and I would certainly keep going with that :)

S... Welcome to the site. I took ginyko and I found it a great help too. How are you getting on?

Laura... How are you poppet? How's the walking going? I hope you haven't been sciving!? :)

El.. What can I say?!!! That's totally shocking. Horrible nasty flu bug and big red patchy bits!! That's really taking the piss! I could just imagine you bursting out laughing. Nothing else for it,eh?! How are you feeling now? :)

CL... Glad to hear you're doing much better. Are you still improving all the time? :)

Ruth.. How did the flying go?

Angela.. I still think you're situation sounds particulary complex. I would consider seeing another doctor. Perhaps at a different surgery. Have two of them on the go at the same time! (Double your chances of actually getting some help?)

Cathy... Did you manage to get an appointment with the VRT specialist?

Maria sweetie... Are you still making some head way?

Sandie... I can so relate to the squealing thing! You know it's bad when the kids sound like piglets! Hope you have recovered girl :)

Lots of love everyone

Katiexxx


Hi El

I suppose what your doctor says is totally correct, as I said before if you are actually anaemic that is the final stage and your ferritin will definitely be low. Mine was low at 10 and I wasn't even anaemic. But, it would have been nice to know what your levels were before you started on the iron supplements. At least she seems to know about ferritin which is in her favour as so many GPs do not. My last visit to the doc resulted in him saying "well you know more about dizziness than me", and when he looked at my ferritin score and the test done for anaemia which was normal, he said "Oh, that's very strange that your ferritin should be so low with a normal hg". Obviously I felt like screaming at him, yes, actually it is normal for the ferritin to be so low before you are actually anaemic, but what's the use?

Oh and yes, a cold or flu will bring back the dizzies. That's par for the course with all this stuff, unfortunately. I hope you feel better soon.

Hi John,

Yes, all the exercises are supposed to make you feel dizzier. They are trying to get your brain to compensate for the damaged inner ear. I don't know about continuing them after it has gone. You might be one of the lucky ones and never have another relapse. I am not so lucky and have dealt with this stuff for four years now and nothing seems to make much of a difference. I know one thing for sure though, I gave up alcohol years ago when all this started. I am scared of it now - lol!!

Yoga is supposed to be very good if you have balance problems but you don't mention that so I can't see any harm in keeping it going. You might try adding going out for a walk to your regime as this is excellent and makes you feel better. I wouldn't overdo it too much though because our brains are working much harder than other normal people without this disease and we tire much quicker in the first place. Basically, just keep facing it head on and don't sit back and let it take over your life. A positive attitude sure does help!

Angela, welcome to my world. You feel exactly as I do about these ENT 'specialists'. It is so frustrating isn't it?

I totally understand how you feel about your employers too. I am sitting here now stressing about losing my job. My employers have not said anything about me being off from work so many times but I always put a lot of pressure on myself to get back to work and I think this actually makes me worse! But, I am at the point where I am thinking 'what the hell!'. My health is more important to me than having a job. I know I need the money but if I lose my job then I will just have to go without and claim benefits! It's not the end of the world. There is absolutely nothing we can do to control this illness and it is totally out of our hands. To this end, I thought I might get back to work this week after 3 weeks off but I am not going to make it. It is so frustratingly boring not being able to work. It sends me mental. My asthma is so much worse and I have toothache which I cannot go and get sorted because I feel so dizzy. Life sucks.

But we have to keep being positive and think that things could be so much worse.

Who do you work for Angela? Do you have a partner to support you through all this? I mean emotionally not financially.

You really seem to get your self worked up and you must put yourself first. Stuff them - you are so much more important. That's what I keep telling myself. I wish I could just give it to my bosses for a couple of days and see how they fare with it. I know I haven't had any trouble with them (yet), but it has to come.

Take care and I am thinking of you.

Sandie xx


Hello all!

Katie, I have gotten over the worst part of the cold and the extra dizzies have also gone, thank God...I can't tell you how relieved I am for that! I still have the congestion from the cold but there is nothing to complain about at this stage as I am near enough back to how I was before the cold struck. The rashes and red patches have also gone and I am back at work. Though I am not 100% from the Labs, I feel good, better and stronger so am staying positive. How have you been? No funny stories to share? ;-)

Sandie, thanks for taking the time to answer my question! Like I said above, the extra dizzies the cold brought on have left so I'm doing okay. I think my GP is okay, as far as doctors and my experiences go. She seems to know what she is talking about so I feel kind of comfortable with her. Thanks for your wishes.

Take care all and don't give up! Best, El xxx


Hello, I'm new and found this site as I was Googling the Labs, as you all refer to it. Had my first really severe attack early in December. Woke up and the room was spinning, headache, motion sickness, nausea, same as what is listed here. In bed a few days, then tried working and suffered through the dizziness as best I could thinking it was an ongoing sinus infection. I went to my doctor 4-5 days later and she diagnosed the Labyrinthitis immediately. I feel fortunate that she seems to be so familiar with this virus, as compared to some of the postings here. Things have been improving. There are on/off days. Today we're under a snow warning and my symptoms had returned 2 days ago. Looking back I now realize that my last severe attack was another major snowstorm. Is there a relationship with the weather? I was intrigued about the comments regarding ferritin and anaemia as I've been on/off borderline anaemic the past 5 years. I think I'll start up with my iron again!

I can understand the anxiety, but I'm much relieved reading other people's stories. I'm trying to force the compensation as much as I can, so I can live with this disease. I want to start with yoga - has anyone had any success with this activity? I've also been having strong leg pains each night, and today actually my legs are sore. Is the muscle fatigue also a symptom? Thanks for your candor everyone. Newbie - Laura P


HI everyone: Welcome to all the newbies. Everyone seems to be coping okay. Sandie, I'm sorry to hear about your job. That is putting a lot of pressure on you. You are right, your health comes first. Do what you have to do. It's one heck of a disorder. Katie- thanks for asking. I'm doing a lot better these days. Almost back to normal. Although last week, had a setback that lasted around 3 days, due to barometric pressure. But what an improvement over last year! Everyone, it does get better! Angela, I will echo what Sandie said. You have to put yourself first, stuff everyone else. It's a very depressing illness. But everyone it will get better. You won't always feel this bad. Love to you all Maria


Hi everyone

I am feeling a lot better at the moment. Asthma has much improved. Didn't realise at the time because I have never been a serious asthmatic but I have discovered chinese stir frys and me and my hubby have been right into them. But what is the main ingredient - yes - soya sauce. I was whacking it in, and the asthma was getting worse and worse! Now that was scary! So, I started to do a little research on the net and yes, a lot of people with asthma are allergic to soy. Also, tree nuts and peanuts which I do like. So they have all gone the journey and I feel so much better. Mind you it might be due to the fact that I have doubled all my meds!

The dizziness is also improving, so that's a good sign. At the moment I am having a couple of days where I feel quite good and then a day where I feel really bad. El - glad to see you are feeling better. You will find that as you go on in time, if it does not disappear you will actually get used to feeling c*** and realise that you can actually function quite well even though you are dizzy! That is the case with me, I get on with my life even though I never feel good and it is only the relapses of mega dizzies/balance that really get to me.

Laura - welcome, feel free to ask anything you need to. Hopefully you will get over this quickly and yes, it does depend on the weather as to how you feel! There is a good chance that the low ferritin might apply to you. If you are borderline anaemic then your ferritin will be low. Google it and you will get loads of info about it. Lots of people on the anaemia healthboards have the same symptoms as us. I am hoping with all my heart that this is what is wrong with me and one day soon I will feel good again!!!!!

Do you also have balance problems Laura? I am just thinking that if you are trying to keep yourself balanced then this may cause the leg pains. When I am at my worst and feeling really off balance I tend to try and grip the ground with my toes (if that makes sense!), and this ends up with my feet aching so I try and make a conscious effort not to do that now.

Maria, don't worry about my job, I still have it! I just worry and I feel so guilty when I cannot work. I just feel that sooner or later I am going to get hauled over the coals for this! But what can I do? So glad that you are feeling better and better, maybe one day!!!!

Take care

Sandie xx


Katie - Thanks for your concern. Have been off the steroids for 5 days now and so far, so good - I'm keeping my fingers crossed that the aural fullness does not return. Only setback I had was a major migraine yesterday.

I've been trying to stay active (ice storms are hard to walk around in!!) and most importantly, remain positive. Think I may give the gingko a go and see if it helps.

Laura - My doc says barometric pressure can set off symptoms. I can't say if I agree but it's yet another theory. As for the leg pains, though I haven't experienced any pain, my legs tend to get really tired and sore quickly. I think Sandie is on the right track that it's because they have to work harder now to help me balance.

Another doctor also told me to watch sodium intake as it makes the body retain water and can cause dizziness. I am trying to cut down to 2000mg of sodium a day (which is next to impossible on an Asian food diet). Come to think of it, I had a really salty meal the night of my vertigo attack so he may be right.

If anything, this horrible experience has taught me a few things.

- It really does matter what you eat. - Patience. I can't wait for the day I am symptom free. - Sleep is golden. - What doesn't kill you makes you stronger.

All the same, I wouldn't wish this on my worse enemy.

Spring is almost here. I sure can use some warm weather and sun. Wishing you all well...

CL


Hi everyone, Katie, I did go to see the VRT specialist last week. She gave me some new exercises to do and I was ok doing them, but a few hours later I was the dizziest I've been in about 2 months! I don't know whether it was the exercises or just a coincidence - but since then I feel so dizzy and sick that I can't even think about doing them. I am very discouraged! Last week I was feeling the best I've felt since this began, was making muffins! and just generally feeling so much more energetic and now I feel like I've regressed significantly. I would be grateful to hear anyone's thoughts on the exercises.

Welcome Laura - I don't have leg pain but my legs do often feel quite tired. I just started a class last week at my gym called Body Balance which is a mixture of yoga, pilates and tai chi, and the VRT specialist thought that would be worthwhile, if nothing else to ease a bit of stress!

All the best to everyone Cathy


Cathy- I have been doing exercises as well for about 6 weeks. I have been doing alot of gaze stabilization which does make me dizzier than I normally am but it usually passes a few minutes after I stop. Yesterday I was feeling really confident about them and thinking they were really starting to help and maybe they were but I am not feeling as well today so my attitude is down a bit. They say it can take several weeks so I am trying to stick with it even when I don't feel like doing them. I know how discouraging it is.

I got the results from my MRI this week and they were all negative. I know that is a good thing but sometimes I wish something would be wrong so they can fix it. I know things could be alot worse but it is just really hard having to deal with this each and everyday. The only time I don't feel like I am dizzy is when I am sleeping, that makes me feel like all I want to do is sleep but what kind of life is that?

sorry for being a downer today...I know it will get better...we all will.

Laura


Hi Everyone Have just returned from my holiday, and the flying was really fine, wore ear plugs the whole way and did not suffer at all and it was three plane journeys over twelve hours. Only problem is that about a week in to my holiday my ear felt a bit congested and throat a bit raw again, and unfortunately the nausea and dizziness appeared again. The nausea was the worst this time, think because was resting a lot and didnt feel dizzy when i was lying on the beach!!

Home now and very tired and a bit dizzy, hoping that this is just down to travelling. Does anyone find that their ear and throat symptoms just drag on???

I promise last question, does anyone get real pressure in their head when lots of people are talking loudly and my ear feels like it is going to burst. I have found i am really sesitive to sound and not sure whether the pressure is just tension or not?

Again hope everyone is continuing to get better and thanks for this wonderful site, who needs therapy when you can just log on to this and feel better.

Take care Ruth xx


Wow.

I managed to come across this site totally "accidently" because of an off-hand comment that scared the carp out of me.

About 4 years ago I went to my GP with "a drinking problem". I felt like I had but I hadn't. My symptoms were mainly dizziness and a "loopy"/disconnected feeling. He diagnosed Labyrinthitis. I was given Stematil and all symptoms subsided in two weeks.

Fast forward to August 17th 2008, and I head to my (new) GP with severe vertigo.. nausea and vomiting at the drop of a hat... He diagnosed Labyrinthitis but I didn't think it was, the symptoms were vastly different from the way I felt four years ago. He insisted and gave me a myriad of drugs to calm my brain stem, calm the nausea, etc. The vertigo calmed down in about two weeks.

I'm going to do my best to describe what I now have/feel but it's difficult to form into coherent thought (and I do apologise if it's all been said before, but I don't have the headspace to go back and read all your posts, I was just grateful that while it started several years ago, it's still going)... Sorry, anyway... I get periods of stupidity, I can't finish sentences, find the right words, my short-term memory becomes nil. At these times it feels... the best way I've found to describe it is "freewheeling"... It feels like my head (and only my head) is on a bike at the top of a hill and I'm not holding the handlebars and I'm suddenly going down the hill at a scary speed. I'm "disconnected". My brain won't focus. My eyes -will- focus but reading small print and too quickly can overwhelm me easily. My neck and shoulders are really stiff, but then they always have been. I do have scoliosis.

Several months ago I had a hearing test because I suffer from tinnitus and I have a difficult time hearing people when there is any type of background noise.... I was told I don't have a hearing problem, but more of a -listening- problem. It seems my brain has stopped taking the information from my ears at face value and doesn't trust the information so it's decided that my ears have been giving incorrect information. It is thought that this is a natural brain response to tinnitus and the "ringing" it can cause.

Last week, I had 5 days in a row where I felt I was finally back in "Buttkicking" form so made up my mind to get to my GP for some anti-anxiety medicine to help me over that little bump in an effort to re-join the work-force, FINALLY (I recently discovered a 20-year phobia and have gone through the resulting Cognitive Behavioural Therapy and anti-depressants and anti-anxiety medicines because of that)..... So, after 5 days, the decision that I was on the mend and ready to head back to "me" I had two more days of Buttkickingness and then I 'crashed'. I'm back to the loopyheadedness, the freewheeling feeling, the tension. Needless to say, when I saw my GP this morning, I -finally- insisted that he refer me to a specialist (I see the Consultant ENT on 26th March!).

The reason I'm posting? My Fiancé just commented that he doesn't think I have "Labyrinthitis" because my symptoms aren't now the same as what they were.

I think I'm just scared poopless that it won't be, if that makes sense. Like a fear of the unknown.

Again, I apologise that I haven't been able to read all of your posts/replies... but am I the only one with that "freewheeling" feeling? Is it possible that I -don't- have Laby and I'm now heading towards fixing something entirely different?

Thanks SO much for any and all advice and regardless I wish you all well :)


Hi everyone!

Just got back from walking the dogs. Tess and Molly, AKA Snorky and the Bandit. And the pair of buggers have turned the inside of my fabulous electric blue mini into a total mud pat! Walked them around the woods and I wouldn't normally go there because the Bandit tried to eat some old dears Yorkshire terrier the last time. Anyway, I'm attempting to work from home again so can't sit on my backside all day! I've started the dreaded art work again and I'm painting Goblins this time! Bonkers

El sweetie... Glad to hear you're now a blotch free zone :) Will have a think on the story front!

Cathy.... You ended up feeing worse? That's cr*p! Saying that I wouldn't be too surprised. Labs is such a weird thing. Anything can happen. Maybe you'll feel worse at the beginning and start to feel better later? How are you doing now?

CL.. I got killer migraines & headaches. Ginger is good for them. I also took ginkgo and was careful with salt. Anyway...Ice storms! Wow! That could be a problem! Stuff it. Dance around the house instead! :)

Morethanblue... Welcome to the site:) It sounds like labs from the info you've given. Everyone on here has similarities and variations. So, even though this is different than your original attack. I think it's the most likely cause. Have you tried Ginkgo before? It helps with circulation to the brain, memory and mental alertness. Might help with the wheeleys! The only thing is I don't think you are ment to take it if you are on anti-depressants, so if you're still on them, maybe just check up on that first:) T and Angela that post here both have scoliosis. So I think that does complicate things even more. The neck and shoulder pain seems to be standard. As for not being able to finish sentences and periods of stupidity. That's totally normal with labs. I used to tell people the same thing 5 times and have no memory of it! So don't worry about that. It will pass :)

Hope everyone else is doing well!

Katiexxx


Hi Morethanblue and welcome.

I agree with Katie, you are likely to be suffering Labs again. I have suffered for four years and in the early days could not focus on anything. Everything was just a blur, for months I could not read, watch TV or talk to people. Since then I have been able to do all these things and I am much better but every time I relapse it is different. I am in the middle of a relapse at the moment and have been suffering from vertigo which I have not had before. I have often said over the years that every time I am dizzy it is a different type of dizziness, so there you go - I know what I mean but whether anyone else knows what I mean or can understand is a different story!! It's hard to describe! Believe me there are lots of different symptoms with Labs, the brain is a weird thing.

Katie, sweetie, no wonder your dogs are mad, they have a good teacher! Hope your little car is clean now!! It is so nice that you still pop in here and give advice even though you are recovered, good on you.

Sandie xx


Hi to everyone and the new people

Sandie, how are you feeling now, is your relapse getting better? thankyou for your info on ferritin levels, will keep taking the iron and wait for it to rise. My levels dropped because i was having periods for weeks on end and like you thought i was going through early menopause,( i am 42)but going to have a small op, so things should get better, well if only i wasnt dizzy!!

Cathy, how are you getting on now, as you will see from my last post, dont worry about flying you will be fine,it didnt cure me but also didnt make things any worse while in the air, would advise ear plugs though.

Laura, i know what you mean about just wanting to sleep, i feel this week i have had more dizzy spells and headaches that just make me want to live in my bed. You sometimes feel you have no life at all eh...

Katie, i have a red mini which i love also but have a black labrador and two kids so a real squeeze for us when we go walking....

Morethan blue, hi how are you feeling now? Have your symptoms settled down any?

I have not a great week , since coming home from my hols i have been really tired and i seem to have had a headache every day, which makes my dizziness worse and my anxiety reach new levels. I am beginning to wonder whether i am a bit depressed because of this, and should i go and see my gp!! Did anyone get anti depressants and did they help with the anxiousness???

Maybe my week has left me feeling low. Hope everyone else is doing well or at least hanging in there. Thanks for the support

Ruth xx


Katie, Sandie and Ruth, thanks for responding!

Today wasn't so bad, I managed a bus-ride, some shopping that was -quite- surreal with the feeling of disconnected-ness for a while and then the bus-ride home... it seemed to be worst when I was home and bending over putting dishes away. But I did manage to purchase my entire outfit for my "Wedding1" while I was out so I'm super-stoked and relieved about that.

Katie, I hear what you're saying about the Ginko and I'll be certain to ask about possible contradictions with what I am already on, though, I am trying to make a move to come off of the anti-depressants as they are not actually relaxing the muscles they were prescribed to relax. I think the part that annoys me the most is my loss of being able to multi-task. I used to be a highly-paid and respected Executive Assistant and at the moment I'm unemployable. I'm finding it quite a blow to my self-esteem (which I've battled with anyway, but I was always able to rely on my work-confidence). Anyway, I almost feel as though I'm preaching to the choir here about how it makes me feel -emotionally- because I'm sure everyone here has felt it at whatever point to whatever extent.

Sandie, it's such a relief to see that I'm not alone and while I must confess to being "crazy" this isn't all in my head. It's a relief that even though it's not "typical" symptomology it still -fits-. It's different but that's OK because the symptoms of what I -think- I have (Laby) aren't set in stone, there's no definitive test.

Ruth, I'm on antidepressants (oddly enough) for IBS as it's a mild muscle-relaxer, and having taken anti-anxiety medicine for a phobia a couple of years back; I can attest that they DO work and DO help... Keep an eye out for side-affects, though, and I strongly recommend seeking some Cognitive Behavioural Therapy as it's an amazing way to learn to cope with/treat the anxiety without the help of medicines.

Thank you all so much for responding - I think I spent most of the day refreshing this page to read more (and finally found the brain-space to send my thoughts!).

I wish you all well :)

(Tanya)


Hi Katie, Reen, Angela. I've been trying to read through a month's worth of posts since I was last on. Angela, I hope you are doing better...you seemed so sad a couple weeks ago. A month ago I had an "attack" - it took about 4 days before I felt normal again. I started working out again, going to the gym, eating better, sleeping more & felt really good. Then a week ago I suddenly dropped to floor like the world was pulled out from under me. I've had short bouts (couple hours) of dizziness/nausea since. Becoming quite anxious about driving my car...feeling a little housebound & fed up. Hubby & close friends are supportive - very glad to have all of you also, it's such a help to connect. Today I've been mildly dizzy, feeling drunk & disconnected constantly since I woke up. Saw my GP this morning & he's calling it BENIGN RECURRENT VERTIGO? I looked it up online & some sites say it's not even a real diagnosis??? It's just a name they give to a vesticular disorder when they don't have an answer. He's prescribed Betahistine Dihydrochloride (an antihistamine)...I'm supposed to try it for a week & let him know. Never mentioned an ENT or sending me for tests of any kind. I told him that I was sure I had VL as I've been comparing notes with so many other sufferers & everything I read points to it. He didn't seem too open to my diagnosis. I think I'll give it a week then get a 2nd opinion. Sending out healing vibes & well wishes to all.


Candy, I'm new here, but want to pipe in with my two cents on what your doctor has said.

According to my own personal experiences, Betahistine is ONLY helpful when treating Menieres. My doctor prescribed it for me months ago (out of desperation, I believe) and my vertigo seemed to pass while on it. However, when I went to the hospital for my hearing tests and assessments the ENT there told me that I didn't have Meniere's so taking the Betahistine was giving me sinus headaches for no reason because it must be a coincidence that it "cured" my vertigo.

Using his advice I went home and stopped taking the Betahistine (keeping it right beside me in case the ENT was wrong!). And sure enough, my vertigo did NOT return.

Please keep us/me posted. Wishing you well :)


Hi Ruth

I am actually having a very good day, yippee! It is so nice to feel nearly normal again, lol! I get so down when I think it is just not shifting but today gives me a little bit of hope that I am starting to recover (again). Have just been to one of those shopping malls where theres loads of shops and felt absolutely ok.

Regarding the ferritin, I am now taking a higher dose as my ferritin levels only rose by 12 points over 5 months, so hopefuly now I will store a bit more and begin to feel better!

Ruth, please don't go down the anti depressant route. I would never touch those things because they are so addictive. I know they do play a huge and helpful part for some people but only go there as a last resort. Get yourelf out for a walk and release some feel good chemicals into your brain. Do small things like walking around the block by yourself when you feel dizzy and give yourself a pat on the back for being so brave. This is what I do and it really lifts your spirits when you have actually acheived it. I start off by making myself walk to the post box and then I take it from there, if I feel good I walk some more, if I don't I walk back home. At least it is something! Don't forget that anxiety is part and parcel of this illness and it will pass eventually. If you do take anti depressants now, when it does start to pass you will not realise it and will be stuck on the pills for god knows how long. Sorry Tanya, I know you take them and they help you but I am against them.

Tanya, well done with the shopping trip. You are concentrating so hard on trying to appear 'normal' and undizzy that you seem kind of detached from everyone and everything. When do you get married? I am so sorry to hear about your job, you must be devastated. Are you actually working anywhere at the moment? I have the same fears about my own job. I am just a sales assistant but cannot even deal with that at the moment so it must have been awful for you having such a high powered job. This disease wrecks peoples lives but keep sight of the thought that it doesn't really matter on the grand scale of things. You must concentrate now on what matters and that is you - your health. Poor Katie lost everything because of this illness and that included her fiance. And, many people over the years have posted about similar experiences. The trouble with this illness is that there is no physical signs like a plaster cast or anything like that and people just do not understand. I myself have lost friends over the last four years but I tell myself they were not worth having in the first place.

Take care everyone.

Sandie xx


Sandie, please don't feel you have to apologise for having a differing opinion! I don't "like" them either and as I mentioned, I want to come off of them as they're not my stomach (for which they were prescribed) nor my mood!

"When do you get married?" Officially, we get married on the 14th March but we're considering ourselves getting married on 23rd May. May was the original date and what everything is planned for, we are only marrying "early" due to the legal requirements of the various countries that are involved. (I'm American living as a Permanent Resident in London, England... The Man is half German/Austrian- half Swedish and living as an EU Citizen here, too. We wanted to wed in Sweden.) Sound complicated yet? It gets "worse" LOL

At the moment I'm not working, when my phobia came to the fore in Nov 2007, I took some sick leave at which point I was made redundant... I don't mind losing that particular job as it was a waste of my ability and I certainly needed some time to get myself better! (I ended up house-bound for a while with the fear of dealing with my phobia outside my own home).

So, "instead" of working I'm practising the HouseWife schtick and indulging in a life-long hobby of being a "maker". I'm sewing my wedding gown, knitting my shawl, making my own jewelry, bouquet, and hair piece for the Sweden wedding. I'm also teaching myself some more techniques as I want to give hand-made gifts to my Chicky of Dis-Honour (see: Maid of Honour) and our mothers. I also pretend I'm a "Designer" and have my own small company that sells hand-made items but I don't market or advertise so the website just sits there looking pretty! *laughs*

I'm really lucky that even with the mortgage The Man's salary is covering all of our current expenses (I've personally cut way down on my spending so there are fewer feelings of guilt).

I've been really "lucky" that The Man had a two week bout of Laby so he's had a taste of what it can mean.

Katie, I know you don't need my sympathy, but I'm sorry to hear about your losses. I hope, through it all, you've been able to see that you might be better off in some ways by not having people around who aren't supportive enough.

I must say that the lack of self-esteem that this disease brings and the fact that it isn't visible does give a nagging worry that The Man will decide he's had enough (and there have been times when I've been doubled over crying and asking him to get rid of me because he doesn't deserve someone who can't cope, someone who's broken!). Luckily, he still seems to be smitten (and, is lazy so is pretty grateful that I -am- running the household so he doesn't have to worry about socks and toothpaste, etc).

Wow. I really do feel relieved to have found this website! People who actually -can- imagine what it is I'm going through!

Sending healing, warm thoughts to all.

Tanya


Hi Everyone

Sandie....Yes... It's totally true what they say about dogs and their owners! Snorky actually has a dog tag that says 'Beware of the Owner'! As for 'The bandit' she's a rescue dog my sister acquired, then dumped on us before b*ggering off to Australia! She's a mix of greyhound, collie and pit bull... Horrific! The critter has taken down two deer and a pheasant just in the last year! The pheasant my father cooked for tea -Disgusting.

Anyway Mini is still stinking, went back to the woods again, so can't be helped. Ruth... Know what you mean, two kids and the dog! The word sardines springs to mind :) I drove 3 mates through to Edinburgh for new year. Dez is 6ft4 and his brother and Aussie girlfriend. Who aren't exactly petite. All with rucksacks and sleeping bags, couldn't see out of the blo*dy windows!

Everyone... I agree with Sandie. As far as anti-depressants go. I think they just mask your emotions. They don't help or solve what made you depressed in the first place. You need time to work through your feelings however raw and painful that may be. My friend Marion was given them by her Dr. She couldn't decide whether to take them or not. I firmly believed she was still grieving for her father she had lost the year before. And wasn't depressed, but just sad. She agreed and threw them down the loo. She's stronger than ever now. Has a fantastic job and really is happy again. If possible, avoid them like the plague.

I think the anxiety labs brings is the main culprit for wrecking self-esteem. If you can set yourself goals, tasks, little things to achieve and accomplish. Do things for other people. This helps you feel needed and more worthwhile again. Give you a chance to break the wretched cycle that you can find yourself in.

Tanya... Nice of you to mention. It was a painful time. But I'm through dwelling on it. It's all too easy to carry yesterday's cr*p into today's. If you carry all that hurt about, what will it be like when we're all 80?! Haha. For me, I'ts kind of exciting now. Not having life mapped out and decided. It's another chance for another adventure :) I too saw myself as being broken. Weird you should say such a thing. I don't hold much belief in that being coincidence. So I reckon that's another buck that can sit at Laby's door! Don't worry lass, you'll get there :)

Candy...Nice to hear from you. I'm sure everyone on this site can relate to the rubbish Dr senario! We all know they just make it up as they go along! I'll keep my fingers crossed it's just a tempory blip you're going through and you'll be as right as rain in no time :)

Laura.. Glad to hear your MRI was clear. Remember that's fantastic news. On another note.. The more you oversleep, the worse you'll feel. Rest yes, but sleeping too much and sitting around the house will make it worse. Try and arrange something to look forward to sweetie, something exciting and fun. Let's face it, you deserve it, putting up with this cr*p! We're all rooting for you :)

Anyway.. I've now scoffed some ginger cake and have poured myself a spectacular measure of Balvenie single malt and have disappeared under a cloud of cigarette smoke. Hehe :)

Lots of love everyone

Katiexxx


Hey Tanya,

What do you think of living in London, do you actually like it. Can't say I do - it bores me silly. My step son live and works down there with his wife but he is looking for work elsewhere. They had all this rubbish as regards getting married as his wife is Brazilian. They confiscated her passport and I don't know the ins and outs of it but they ended up having a very small registry office wedding. They had planned on getting married in Brazil but it didn't happen.

My son is also a frequent visitor to London as he is studying at Oxford University. He was there last weekend to take his girlfriend to see the Lion King.

Anyway, you sure do sound talented. I can't believe you are going to do everything for the wedding, I really admire you. You should definitely get that website up and running, you never know it could make you a small fortune!!

Katie - enjoy your malt and ciggies - you really are a bad girl, haha!! If I'm ever in those woods and see you coming towards me with those dogs I will run in the opposite direction!

Take care

Sandie xx


Hello all and welcome to all newbies!

It feels like such a godsend when in the midst of sheer panic and fear due to this monster, you come across this website that just calms and relieves you....as well as confirming that you are not totally insane and imagining all your symptoms (as some doctors dare to suggest)!!!!

I am still overcoming what I believe is Labs...it was never officially diagnosed as the doctors I visited were anything but doctors...I'm not 100% but I am certainly much better. My progress, when looking back, began beg-January this year....after my initial attack in September '08, which saw me stay home from work for four months. I have a third ENT appt on March 13 so that should be fun.

What I want to say is do not give up...and make a conscious point of seriously looking into herbal remedies. I say this because doctors tried to throw various meds in my direction due to their lack of knowledge of Labs and thank God, I said 'no' to virtually everything and went down the herbal path instead.

The things that worked for me, which I continue to take until today, are Ginkgo Biloba (capsules), Ashwagandha with Gotu Kola (capsules), and Chywanaprash (paste). I also take Echinacea to boost the immune system, multivitamins and Oil of Oregano, which believe it or not is antibacterial, antiviral and antioxidant as well as a zillion other beneficial things! You have nothing to lose by trying these things, except, as Katie mentioned, the Ginkgo should not be taken with some meds.

I also changed my diet completely and am now a bit of a health freak eating fresh fruit and veg daily and have cut out sugar from my diet and replaced it with honey in my herbal teas, stopped coffee/caffeine altogether and drastically reduced my sodium intake!

It may sound overwhelming but only when you have suffered can you understand how easy it is to do such a thing. When discussing this with someone for the first time and I mention that I have stopped coffee, they gasp and say 'I couldn't go without my coffee'...but that is only because they cannot begin to imagine what a Labs sufferer goes through.

Anyway, what I am trying to say is stay strong, read up on what you believe you have got, understand why you feel the way you do, what your body is going through and how it is fighting back and learn how to assist it. Most importantly - as hard as it might be - try and be as active as possible, whether it is around the house or a 5-minute walk...fresh air works wonders for the mind. Remember that when an action makes you feel dizzy, do not avoid it altogether, it's just your brain trying to compensate so keep doing it, don't push yourself too hard, but do not curl up in a corner and avoid it.

Be strong everyone...I know it feels like you are slowly disappearing but you aren't and you are far, far stronger than this crap...make a point of laughing and being around people that love you...kick the rest to the curb!

Best, El xxx


Hi everyone, I went back to my VRT physio last week after my setback last week - I was describing some throbbing pains above my left ear and she suggested I might have MAV. So I came home and jumped on the internet! and it seemed to fit -mainly because numbness and tingling is often mentioned, and hormonal changes play a large part. (I got my period two days after my setback started last week). I was just wondering if anyone else has on/off numbness and tingling, and/or if their symptoms get worse at that time of the month? I'm trying to work out whether it could still be labs. Anyway I am seeing a neurologist in about a month so hopefully I might get some answers then!

El - I know what you mean about how easy it is to change your diet - anything to stop those dizzies! I too have given up coffee, chocolate, alcohol, and just never feel tempted as I know it will make me feel worse.

Katie - I think it's fantastic how you come on the board so often after you have recovered - you are very supportive to everyone! Thanks.

My sister was telling me today about her mother in law who has liver cancer and is living every day to the full, only wanting to spend time with her grandchildren and make the most of her time left. I must say I was quite inspired, thinking of how sorry I often feel for myself - I need to count my blessings a bit more often I think.

Take care everyone, Cathy


*chuckles* Thank you, Sandi, but I think there's a fine line between "talented" and "insane" ;) My website is up and running, but I don't sell anything from it because I don't advertise or market it in any way. So, it remains more of a hobby.

As far as living in London goes, I like it "well enough"... I'm originally from Small Town, USA and like both styles of living... I'm pretty adaptable, thankfully! ;)

I went to the dietician today (finally) for my IBS and while I thought I was eating "healthily" it turns out I have -too- much fibre in my diet so I have to cut back on my veg and whole grains and add more refined flours! *laughs* I know the pain, cramping and stress caused by my IBS worsens my Labs, which in turn worsens my IBS... seeing a pattern here? So, I'm hoping that this new eating regime will help lessen all symptoms! (I go back in a month to add weight-loss elements to the diet = woot!)

Today was a "good" day. I'm still on a high from finishing my cotton dress yesterday and am now ready to start making my modifications and today's travel to the dietician and home again was completely uneventful and comfortable! Long may it continue! (Yes, I completely realise it probably won't. I'm getting married this month and I know that will take it's toll)

As ever, I am wishing you all the best! Tanya


Hey guys! How is everyone doing? I just had a quick question for anyone who may have had the same problem. I have been doing VRT for a couple of weeks now and my eyes have gotten really sore. They feel like I have been crying and are also aching. They feel like that even when I wake up in the morning after having a good nights sleep. I don't know if it is just my eyes being sore and exercised from the VRT or if something else is going on? Thanks for the help and I hope everyone is feeling better.

Laura


Hi Laura

I'm totally convinced it's just eye strain you're suffering from. There are three main muscles that sit at the back of each eye and it sounds like they've been stretched a little too hard. I would just give it a break for a few days and you should be fine. It's Absolutely nothing to worry about. You can buy an alternative remedy called ruta graveolen for eye strain, which comes from the rue plant. But I've never tried it, so I don't know how good it is. Anyway...drink plenty of water, don't stare at the computer screen too closely and get some eye drops. All being well your eyes will stop hurting in no time :)

Love Katiexxx


Hi Everyone Thanks for all the advice re the anti depressants, have taken it on board, you just get fed up eh

I have had a terrible week, had to go back to GP as had a really painful ear, same one again, got yet another ear infection and another lot of antibiotics!!! Been really dizzy and got horrendous headaches every day. Is this just because my ear is bad again, starting to worry its something much worse, anxiety queen or what!! Did anyone else get bad headaches, it is like my head is in a vice from my temples to the top of my head, my eyes hurt too????

Sorry to keep asking questions but feel you are the only ones that know what they are talking about...

Hope everyone is doing better than me..

Ruth xx


Ruth...

I had mega evil headaches. About 6 a week. Not exactly pleasant. I got so piss*d off announcing I had, yet again... another blo*dy headache! Everything you have described from the painful ear, sore eyes, anxiety etc... It's certainly all part of the labs. I know it doesn't feel like it will ever go away when you're stuck in the middle of it. But it will come to an end - Really :) Because I'm better I can see how it is now, but I so understand where you're head space is at. I promise this is tempory and probably one of the worst things you will ever have to cope with. But, let's face it Ruth... failure is not an option! Try not to question yourself. Remember before you had this, who you used to be. You are the same girl and you're fabulous!!! You're only crashing because you have labs - Not because there is anything else wrong with you :)

Katiexxx


Hi Ruth,

Much like Katie, I suffered with headaches near enough every day and they went on for hours...fresh ginger helped me a lot...as did Ginkgo Biloba. They will pass, as will the sore eyes...I still have sore eyes five months on but nowhere near as bad as they used to be. The sore eyes are usually due to the extra work they put in trying to focus due to the dizzies...a sore neck usually accompanies these symptoms, too, for very much the same reason.

Stay strong, Ruth, you are far stronger than you give yourself credit for...people do get over Labs and usually come out the other end stronger and better for it.

Best, El xxx


Katie- Thanks so much. I have cut back some on my eye exercises and been using re-wetting drops like crazy. I woke up yesterday and my eyes were both really swollen and my skin was raw all around my eye. I am starting to think it may be an infection because they are so puffing. I made an appt. with my eye doctor because I need to get a new prescription anyway so I thought I would let him check it out just to make sure. I am sure it isn't that big of a deal but my eyes just hurt so badly. It is really hard to keep them open. It is crazy when a new element gets thrown into this already horrendous illness. We will all make it though.

Ruth- I have also had really bad headaches with labs. In the beginning they were so bad it honestly felt like my head was going to explode. They finally let up but I still get quite a few headaches they just don't seem to be as severe. It will get better:)


Ruth - I recently had a minor unrinary tract infection for which I was prescribed antibiotics for 7 days. When I was on them, they made me incredibly dizzy and caused major headaches/migraines. You'll start feeling better after you get off the antibiotics.

As hard as it is, try not to let the anxiety get a hold of you. I was prescribed valium for my anxiety and vertigo but have not touched it. Whenever I felt an attack coming on, I would distract myself by watching a funny movie, taking a nice bubble bath, going out for a walk around the neighborhood or calling a friend for a laugh.

Hello to everyone else. Just an update on my Labs - about 6 weeks ago, I had that awful full headed/dizzy sensation in my right ear and was prescribed a 3 week dose of steroids and 4 weeks of diuretics. Well, the meds seem to have worked. I have been off them for at least 3 weeks now and I'm feeling great. I'm keeping my fingers crossed that the worse is over...I can almost see the light at the end of the tunnel. I know meds are not the answer most of the time but they really did work for me in this case. As long as you don't have to take them long term, I think it might be worth exploring with your doc.

Until next time, wishing you all health and happiness...

CL


Hi Ruth,

Much like Katie, I suffered with headaches near enough every day and they went on for hours...fresh ginger helped me a lot...as did Ginkgo Biloba. They will pass, as will the sore eyes...I still have sore eyes five months on but nowhere near as bad as they used to be. The sore eyes are usually due to the extra work they put in trying to focus due to the dizzies...a sore neck usually accompanies these symptoms, too, for very much the same reason.

Stay strong, Ruth, you are far stronger than you give yourself credit for...people do get over Labs and usually come out the other end stronger and better for it.

Best, El xxx


/// Try not to question yourself. Remember before you had this, who you used to be. You are the same girl and you're fabulous!!! You're only crashing because you have labs - Not because there is anything else wrong with you :) ///

Katie, those are some of the best words I've ever seen written. Thank you.


Hi all. I haven't written in a while but glad to read everyone is getting on w/ progress. I have a question - has anyone been pregnant while still dealing w/ labs or VN? I suspect I might be (though it hasn't been confirmed yet) and am concerned - as u can all imagine - how this might affect me as I'm still dealing w/ VN. Hugs - T :-)


Back again from 2/23 - Dizzy spells come and go. It's weird when I'm having a difficult time that I can feel it even when I'm sleeping! I'll roll over (usually left side to right side) and wake up feeling really dizzy. Then I'll fall back asleep. This has to be contributing to my tiredness during the day, don't you think? Last Thursday I felt the greatest I've felt in a long time. I couldn't believe it! I felt good, was laughing, felt very ENERGETIC! WOW Then that night I couldn't sleep and only slept about 4-5 hours. I was really feeling lousy on Friday. It was hard to stay at work the whole time and then I had a difficult time driving home. People don't really understand when I tell them I have this dizzy thing going on. So I refer them to the net. I do feel very stupid sometimes because I can't seem to remember any new info coming my way. I've started a part time job working in a costume shop - I love to sew - but I have to keep asking for directions, sometimes 2-3 times. I know I'm annoying the designer, but I can't do anything else unless I just wing it and suffer the mistakes! Oh Well Not so bad today, but I guess I'm a bit depressed. Tomorrow's a new day!

Does coffee really have a negative effect????? Laura P


Hi everyone, I'm so glad I found this site, as I'm really scared as to what is going on with me.

3 weeks ago I got off the 6hr flight from east coast, that week-end I felt extremely tired & thought I'm just exhausted from the week-end of meetings & jet lag. I thought that the symptoms could also be thyroid related (I ím hypothyroid) and that my meds need to be adjusted. I went to my endocrinologist & she told me it doesnít seem to be related to my thyroid.

Following the week-end, I felt like I couldn't walk straight, couldn't concentrate & felt really spaced out. I didn't feel bad vertigo, but more mild case of dizziness. Since then my symptoms include: bad brain fog, very spaced out, can't concentrate, my vision is a bit blurry, dizzy, nausea. I also now feel numbness on the top of head to the left, my whole left side (including my ear) feels really congested, I have tingling in my left foot & left arm, also feel numb in my jaw. I feel like my speech is also slow.

Mentally I'm so out of it & so spaced out that I can't work really well. I went to 2 different ENTs which told me that I probably have inner ear infection, but there is no way to know for sure, they told me that I should go to neurologist just in case as well.

The last ENT prescribed 6 days of Prednisone (steroid) which didn't seem to help. I have been really down about this (crying a lot), every morning when I wake up I'm praying I feel better, but unfortunately I'm not yet, which is really depressing. I feel also extremely irritated, not sure if itís related to it. It's been 3 weeks since my symptoms started & they came on very suddenly. I had to fly again this week (for work) & plane again seemed to make it worse. I'm going to get MRI done next week just in case.

Can you please let me know if you have experienced similar symptoms, they just feel so strange and I question if the inner infection can cause all these strange & scary symptoms. P.S. I seem to feel better at night. Also does flying make it worse? For those of you who feel better Ė was is a very slow/gradual process or did you just wake up feeling good?

I hope to hear from you. Thank you so much in advance. Natasha


Hiya

Katie,El,CL and Laura Thankyou so much for your support and reassurence, i cannot tell you how much you have all helped me,it is real hell when you are havin so many symptoms and your mind start to think real bad thoughts and before you know it you truly believe you have something really sinister going on in your body. You have all helped me stay sane....well slightly more sane anyway!!! The antibiotics have helped my ear infection but as you all know have been left with the usual symptoms of being on the boat, nausea,sore eyes particularly on the affected side and general head fog.....but hey ho you just have to get on with it. Work is hard at the moment as i work in a hospital and the bright lights really bother me and usually have a headache by end of the day, have to look on the bright side at least i am managing to work ......

LauraP, I can totally relate to lack of concentration, i used to have loads of get up and go. Was the most shopaholic you could meet, now it is an effort to go for grocery shopping far less serious retail therapy....

Cathy and Sandie how are you both doing, still on the road to recovery?

Natasha, your symptoms sound very like everyone else on this site. I certainly experience most of them.I have been on a long haul flight recently and i did not experience any problems, i wore ear plugs the whole time. However i have just had another ear infection and not sure if this was exacerbated by the flight..... I have seen an ENT specialist also and he says that i have an inner ear problem but can really understand your fear i still dont quite believe at times that there is nothing else more sinister going on, i think this has to with anxiety and how it messes with your brain. I have found this site and the people who post on it invaluable to me. I am not as experienced as many and they will be able to answer all of your questions. Stick in there and ride the storm xxx

Wishing everyone good health Ruth xxx


Hi all!

Natasha.. Welcome to the site sweetie. Every last thing you have described sounds exactly like labs. The brain fog, speech problems, being unable to concentrate... etc.... etc! I'm afraid, with labs, it's always an extensive list! And you can be sure at least one of us here will have experienced what you are suffering. It really does cause scary symptoms, so you're not alone. I also felt better at night- not sure how that works! I am better now, but it did take a while - Yawn! Whatever you want to know someone will try and help you with an answer.

Laura...If the skin around your eyes is raw and they're starting to puff out, then there's definitely more to it than eye strain. It does sound like an infection of some sort. Is there any chance you have been rubbing them? Perhaps without being aware of it? If so.. that would be enough to irritate the skin. Have you seen the eye doctor yet? And if so, how did you get on?

Tanya sweetie... When I was going through the worst of it. My mental state could be way off. Not questioning yourself, It's something I feel so passionate about. I thought I was horrible and crazy. Not a nice place to be! It's entirely the labs and nothing else. You, and all of us here are exactly the same as we were before. Labs can do horrid things to your mind and really easily thoughts can become so dark. It's all part of the illness. It has to be one of the worst things you will ever go through. But you WILL come out the other end of this and it will just be a horrible memory. Focus on the positive and all the things you have to look forward to. If you can do that. You will get better faster. It's going to be ok... In fact with everything that's on your horizon, it's going to be just lovely for you :)X

Laura P... I think the best way forward .... regarding your designer is bribery! Keep him/her stocked up on cake, compliments and Starbucks and you'll find you can ask the same question as often as you like! I'm really glad you are feeling better. Your memory will soon catch up with the rest of you :)

CL.... Really happy to hear the meds have been working for you! Brilliant. I thought about your poem again the other day. I think you must have dealt with a lot of your own cr*p to keep such words close to you. Thanks again :)

Cathy... How have you been this week? Do you feel as if you're starting to make progress again after the setback? Anyway poppet, I hope you are doing well :)

El... Darling. How are you? I hope you are still kicking the cr*p out of it?! Well, let's face it. None of us here would expect anything less!!! :) Sandie, Maria and Ruth. Hope you girls are doing well?

Anyway... I must stop talking. I'm in the middle of painting a witch playing the piano and she hasn't got any hands, so sciving is over!

Lots of love everyone

Katiexxx


Hi all- How is everyone doing?

Welcome Natasha. Your cases sounds so similar to my own. My ordeal also started after I got done flying. The doctors kept saying it was some kind of inner ear infection and I was treated with steroids, diuretics, antibiotics, and a few other things. None of it seemed to help. I know how discouraging it can be and how depressing it is. You just keep thinking it has to go away soon. I have started to feel better gradually but it has been a slow process. Some days will be really good followed by a few bad ones. I have had this a little more than 5 months. Dont let that scare you or discourage you though because everyone is different. You just have to take each day as it comes and not think too far ahead. It will get better. Try and stay active, I know it is hard when you feel as lousy as you do.

I have still been continuing my VRT and trying to take lots of walks. Things seem to be getting better little by little. I went to the eye doctor and found out I had pink eye in both eyes! That is why they were hurting so bad. Luckily the treatment for that is pretty simple but pink eye is not pleasant. I hope everyone else is getting better.

Laura


Ruth, Katie & Laura - Thank you ladies so much for your support & so nice to hear from you.

I will keep you posted, going to a doctor tomorrow to get a referral to neurologist (again just in case) as now I'm definitely convinced that I have labs. It's so sad that doctors know so little about this, so I feel blessed that I found you.

Thanks again. Natasha


Hiya Katie,

I'm good, thanks! Hope you are, too!

Yeap, still fighting it...going on six months now...am far better than before, still working part-time but hope to start full-time within the next few months or so.

Am off to the ENT on Friday - third appointment since this all began. I think he will refer me for VRT and I have to say, from what I have read on here, I am pretty nervous about it.

I'm not constantly dizzy or off-balance like before...it is more so when I turn my head to look behind me...whichever side I turn, when I turn my head back and look straight ahead I get dizzy and extremely nauseous.

Is that reason enough to start VRT...anyone? Or should I just let this crap run its course and hope it will disappear by itself over time? I'm a bit lost for what to do as I can really do without the dizzies coming back full-time.

All the best, El xxx


Hi El :)

Doing just fab sweetie. Thanks for asking. See what you said above about turning your head. That's exactly how it was for me towards the end of it. When I would turn my head from side to side, it would be like... Whoosh... As if I was on some awful fairground ride. It would take a moment or two in between for things to level up again. ( During I also felt really giddy and my eyes ached ) It makes looking around such a blo*dy effort!!

As for the VRT, who knows. If you are offered an appointment I would certainly go and see what they have to say. If you don't like the sound of it, you don't have to do it. It does seem to be El, you are doing a good job healing by yourself and you are still making progress. I would wage money you'll go and get as much info as poss and decide later if it suits you to do it!:) Anyway let us know if ENT have become clever overnight!:)

Lots of love

Katiexxx


Hi everyone, Katie and Ruth, I'm going quite well, thanks for asking! This really is a great support group. I do think I am getting better slowly, I am having good and bad days but the good days are getting more frequent. I have started working out at the gym again in the last week which I haven't felt up to for months so that's a good sign! I know what you mean though Ruth about the anxiety that it is something more, when these strange symptoms come on it is so hard not to panic! It doesn't help that I was a bit of an anxious person before all this!

Welcome Natasha. I have similar symptoms to you too - dizzy, nauseous, and the tingling/numbness. I also felt better at night. It has been about 5 months for me, and while I am getting better, it seems to be a very gradual recovery, but that's not the case for everyone. Look after yourself!

Laura P - I definitely find that if I don't sleep well then I am much more dizzy the next day. That's one of the main reasons I'm trying to do more exercise during the day so hopefully I'll be more tired and sleep better. I also found that I feel worse after drinking coffee - I don't know if others have found that.

Take care everyone Cathy


I have Symptoms very similar to what I have read here on this forum for the last 2 months, one Doctor told me I had Sinusitis, another Doctor told me I had a Viral Infection that has infected my inner ear thats all they could tell me, I became very frustrated with Doctors and decided to see an Acupuncturist, after one month of treatment I am no longer dizzy and my balance is nearly back to normal, the only thing is my legs, they are still heavy and I occasionally get a tingling/burning sensation and my energy leves and motivation have really dropped. About a week ago I thought I had it beat and my legs were feeling fine, I got a cold and my legs feel like lead again and my sinuses are congested again. I find exercise really helps, initially I got very dizzy and lightheaded when training, but as time goes on this feeling slowly goes making you feel better everyday. Also take lots of Vitamins and herbs and meditate when you can, I try not to let it get me down but the slow recovery really gets too me, anyone else get the crazy heavy leg feeling.

DC


Hi Cathy,

The first thing a doctor told me at the beginning of my saga was to stop caffeine intake - especially coffee...if you can't stop, then reduce it significantly...no point in inducing more and worse symptoms - they're bad enough as it is! I stopped coffee altogether and feel better for it! I was also told to significantly reduce intake of dairy products. I can't say what worked for me other than staying as positive as possible throughout it.

Katie, ha-ha-ha, I very much doubt the ENT will tell me anything relevant - maybe it's best for him to stick to writing referrals - in my case, that's what the ENTs have been good for!!!

It's good to know you had this strange thing when turning your head...you'd be surprised at how much better that has made me feel...I will go to see the ENT actor on Friday and if referred for VRT, I'll go to see what they say but I very much doubt I'll go ahead with it.

I was supposed to be going to Greece in February but my plans changed...have to wait til May now to see if flying will affect me - but somehow I think I'll be alright - will be going to Cyprus for 10 days with my mum (girls holiday) ;-)

Anyway, it's my day off today so will make use of it and lie on the couch and watch dvds!

Best, El xxx


Hey Katie

Not been on in a while as I have been feeling pretty awful. I am very confused with all of this now, after being told I have Labs for the past year and 3 months, after another visit to ENT they urgently ref me to a Neurologist after seeing him on Tuesday I am left feeling very upset, angry and so confused I really dont know what to do now? The Neurologist thinks and I mean Thinks that its not in my Ears its my head and he wants me to go for a Spinal Lumber Puncture and to be honest I am totally terrified of the thought as I have Scoliosis which is curvature of the Spine and have heard horror stories about this procedure never mind me having had surgery on my spine. He also said he wanted to put me on new meds which would possibly make my mouth tingle and make me feel sick, and I thought Oh that sounds great NOT!!! He then went onto saying well what do you want to live with Dizziness or the side effects of the meds. He said There is a part of the head where it affects balance and he thinks this is the problem. I told him all my symptoms are Labs related and he said it probably started off with Labs but its went on too far now. I went to see my GP today and was hysterical, I told him I was not going to go for the Lumber Puncture as I cant run the risk of doing damage to my spine, also I told him I didnt believe it was my Head, he said he could be persuaded that it is this bit of the head which I cant remember, celibrim or something?? He said to me I am getting down on my knees and begging you to get it done, I said ok but I have no faith in these doctors now. I really dont think its my head! I have had a constant headache since Tuesday because I have not stopped crying. I think they adding 2 and 2 and coming up with 5. Its so frustrating!! PS. I have also felt better at night time, wierd that eh? Bloody doctors I should never see another one again and come off all the meds and see what happens..

Sorry for the rant but am freaking out again!

Angela


Katie, I too hate Doctors as I always leave them feeling worse then when I went in, I made a decision to go the alternative route when my GP keep going on about my blood pressure being on the high side and kept ignoring all the other symptoms I had in regards to the inner ear problem, sometimes I think I should go to another Doctor for a different opinion but I think to myself as long as I can improve week to week thats all that matters. Have you tried any alternative treatments?? It might be worth a shot at this stage..

DC


Angela...

Wow, I am so sorry poppet. It's just cr*p after more cr*p for you, isn't it? I always felt from day dot your situation sounded especially complicated. But all of this rubbish now as well? It's just so unfair.

Cerebrum.. I think is another name for the brain? However, I know there is an area called the cerebellum. It's at the back of the brain and it helps to coordinate movement and it also controls sensory perception. So that might be the word your Dr mentioned.

A mate of mine had a lumbar puncture done, about 10 years ago. (He was exposed to meningitis) and he did say it wasn't exactly pleasant, but it wasn't as bad as he'd expected. Also I understand for some reason women seem to cope with them better than men, so that's one thing on your side :)

If I was in your situation, I would have a list ready with every possible question I could think of. It is your body and your right to be well-informed. It doesn't surprise me at all you have such little faith left in doctors. Especially if it does turn out you've been mis-diagnosed. Also... because of the scoliosis you need and deserve some extra reassurance from them.

like you said you've coped with this thing for a year and 3 months and you are still standing! You should be really proud of yourself. A lesser person couldn't have, so don't doubt your own strength. What you've handled day-in,day-out for all this time is far worse than a 15 minute procedure.

It's no wonder you're getting headaches, your stress levels have just rocketed. lavender essential oil is really good for sleep and keeping you calm. All I can suggest is just take things a day at a time sweetie. And try and do things that cheer you up, as many happy things as possible :) It will help to keep your stress levels at bay.

We are all here for you and maybe, finally you will get some answers and start on a path that will nail this cr*p once and for all :)

Lots of love

Katiexxx


Tomorrow is Big Day 1... and in case you're in the mood to live vicariously through another I'll include a link to some photos of what it should look like

http://www.facebook.com/album.php?aid=228904&id=820225110&l=a4708

If that doesn't work, slap me on Monday and I'll find another way to share.

Symptoms are calming at the moment, which is super-helpful as while I have everything ready for tomorrow, I still have MOUNDS to do for the event in May (dress, menus, bridesmaid's dress, etc, etc).

Angela, honey! I cannot imagine where you are right now and it all sounds so horrid (I haven't seen an ENT yet) but I am sending you calming, healing thoughts in the hopes that they reach you and can help settle you in this understandably stressful time. I can't offer much advice at all but my heart certainly goes out to you!

As for the rest of you; thanks for being "here"! I'm sure you all feel the same - having people who "get it" means more than words can express at times.

All the best! Tanya


Angela,

I feel so sorry for you, please try not to worry too much. Just to let you know that I have suffered all this junk for 4 years this month and my docs still say it is the Labs. Some people just don't recover because of the damage that is done to the nerves in the inner ear. Just wanted to say that I also feel better at the end of the day and I know that many people do and I would say that this is a typical sign of Labs as at this time of the day you are not using your brain so much and everything probably settles down inside your head, hence lesser symptoms. That's just my thoughts anyway. I can't really see how doing a lumbar puncture can tell you what's going on in your head or maybe I am just being ignorant here? I would have thought an MRI of the head would be a better and less painful option?

Myself, as you all know, I have been going down the same old route for years. No answers to all my problems with dizziness and balance. I think I definitely started off with Labs and have never completely recovered because I have been very low in ferritin (iron) for god knows how long. This also causes dizziness and balance problems along with a host of other stuff which I also suffer from. I need to get my levels up to at least 50 (so I have been told by other sufferers not by any doctor), before I will start to feel better but at last test I was only 22. So that is one route I am pinning my hopes on at the moment. BUT, I have been to my GP again (a different one this time), and the purpose of my visit was to try and sort my asthma out as it has been so much worse lately. She actually looked up my nose with some instrument and she couldn't believe the amount of swelling in the lining of my nose. She said she couldn't even see past the swelling , it was so bad and said I have severe allergenic rhinitis. This, she said is making the asthma worse as the phlegm is dripping down the back of my throat (yuk) causing my airways to swell and stopping me from breathing properly. So, there's another reason why I might actually be more dizzy - if it is my ears then all this congestion will be making things worse for me hence the dizziness and balance problems persisting for so long. She asked if the ENT had looked up my nose and would you believe it but they actually HAVE NOT!!!! Wouldn't you just think that this would be routine as everything is connected i.e. Ear, NOSE, and Throat!! God, don't you just feel like you are banging your head off a brick wall!

Anyway, it's back to ent for me so they can sort out my nose! What a life, it just goes on and on. At least I feel like I might actually be getting somewhere. If I can get my ferritin levels up and get my nose sorted out I might stop feeling dizzy and be able to walk without feeling the world is moving.

I am still off work at the moment. Having good spells, bad spells and really bad spells.

Take care everyone and keep fighting.

Sandie xx


Hi all,

I went for my 3rd ENT appointment today...and, of course, it was a total waste of time. The doc who usually sees me didn't even bother today...I was seen by someone else. This one turned my head left and right with speed

So, I actually feel great considering LOL. I am doing a great job of beating this crap alone and certainly do not need anything from these incompetent 'ENT' people.

Angela, my gosh...you poor thing! I don't know how I'd be reacting if I were you, I really don't :-( I think I'd be in prison for murder by now! Stay strong, do not give in to it or the incompetent so-called doctors. As impossible as it might sound, try to be positive...we all know how stress and sadness can multiply our symptoms. My thoughts are with you.

Stay strong all, El xxx


Hi DC

Welcome to the site :) I would really recommend ginkgo biloba, oily fish, loads of fruit, vege, honey, ginger and as much laughter as you can muster. The latter being the most important in my opinion :)

When I was sick my blood pressure was high and my legs were like lead. Now the labs has gone my legs are not heavy and my blood pressure has shot back down to normal. So, can totally relate to that one! You're right about the exercise. I found it helped me to get better faster. I think all that sitting about just allows your muscles to weaken, which can't be good. Whatever you want to know, we will all try and help you as much as poss :)

Sandie and El... The pair of you are surrounded by incompetence!!! Between the two of you girls you'll be able to start the 'We hate ENT Club' Same sh*te - different year, eh? Bunch of tw*ts. The lot of them :)

Tanya... Good luck with Big Day 1 ! Shall have a stickybeak at on-line album asap :)

Lots of love everyone

Katiexxx


Did anyone ever get burning sensations on different parts of the body, this just started a few days ago and now Im worrying again, Im thinking it may be a reaction to some new herbs I started taking a week ago so I have decided to stop taking them for a few days to see if it stops. I also suspect anxiety plays a part in all these weird sensations I have been through in the last 2 months, anyway Im going to stay positive and ride this out..

DC


Hey Tanya

Hope your day is going good for you, at least it's not raining (up in northern england anyway), mind you it's a bit windy. Your outfit looks fab, I love the 'bouquet', very different and original. You are a clever girl. Best wishes to you and your new husband.

Katie, you are right I do hate the ENT, I could do a much better job myself. And, I've got to go through it all again, aaaagggghhhhh!

Take care everyone

Sandie


Hi DC, Yes! I get the burning sensations, mostly in my arms - with pins & needles, tingling etc. It worries me almost more than the dizziness - worrying about what could be causing it. I have read somewhere that it is inflamed nerve endings causing it - am going to a neurologist in a few weeks and am hoping she will set my mind at rest! It will be interesting to know if it stops after you have stopped taking the herbs. All the best to you and your husband Tanya!

Cathy


Hi Cathy, So Im not the only person getting burning and tingling, my dizziness is pretty much all gone, my balance is still a bit out when Im moving around alot in shops and at work. Im able to get through a pretty hard workout now which 4 weeks ago I would have felt like falling over, my mind races through every possible scenario everytime I get a new sensation, the burning really got me panicking, let me know how you go with the neurologist. Im convinced that this problem with the inner ear is causing anxiety symptoms to become very intense, although Im not having bad anxiety attacks, I get alot of the physical anxiety symptoms.

DC


hello all - I'm on my fifth bout of labs in four years. I must firstly thank Richard for this site as it was the first one I found when I googled labs originally four years ago. All of you hang in there - it's tough going but it does get easier & reading about it and sites like this one do help when you know what's going on - it is frightening when you first get it and have no idea what's happening to you. I've got a few tips which I've found have helped me to cope - firstly to relax - stress makes it worse, chocolate does make it worse - try to stay away from it. Salt makes it worse too. I found that having diazepam helped a lot, it counteracts with the stress side of it. I also found that recently I've been getting blocked eustacian tubes, I found something called the 'eardoc' which helps with the blocked tubes so when the labs appeared last time I thought I'd give it a go with the eardoc and it does alleviate some of the sympoms such as the cotton wool head and the sickness. I'm not trying to sell it to you, when I first had labs I was desperate to try anything which might work. I also found that the sites vary between telling you to keep active and resting - I've found a combination of both have helped. The first time I played table tennis - this helps as you're concentrating on watching the pingpong ball bouncing round so your eyes follow it - this is one of the balance exercises. I then found that playing tetris helps as again your eyes are concentrating on watching something. Best of luck to you all with your recovery.


Hi DC, I can relate to pretty much everything you wrote in your last post, re the dizziness/balance, although the dizziness gets worse at 'that time of the month'. I too am much more able to do normal things like exercising than I was several weeks ago, which I have to keep reminding myself of how much things have improved! My husband is convinced that my tingling etc is anxiety related - I too feel more the physical symptoms rather than feeling it in my head if you know what I mean - although then the symptoms make me more anxious! I need to try to keep busier - my youngest child started school in February and I was planning to go to work but I haven't felt up to it yet, but it's a disadvantage as I'm at home alone all day being aware of every tiny thing going on in my body. Does your tingling/burning stay in one place or does it move around? Mine seems to move. Cathy


Cathy, It definitely moves, sometimes its on my arms, then its in my legs and even on my back. Its basically a hot feeling as if you have been in the sun, I notice when I workout or when Im busy I don't really notice it, but before I had the burning I had tingling, now I don't have some much tingling but more burning. Im sure with time it will subside, Im just trying to stay busy with work and other things so that I don't focus on it, Ive found if I focus on it it gets much worse. I think this condition is conquered one symptom at a time, all we can do is take it one day at a time and overcome this thing.

DC

I've now made Facebook Connect work on Sharp Blue. If you use the "sign in" link when you write a comment it will let you sign in using your Facebook account (or with Livejournal, TypeKey or OpenID) and then your comments will appear without me having to approve them.


Just having a shot, to see how this works :)

[Did you use the sign-in link? If so, perhaps I have to approve you as a commenter somehow... - Rich]

It worked for me?

(Thank you, again, Richard!)

It worked for me too! Great work Rich:)

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