Sharp Blue: Labyrinthitis comments, page 11

Hi, Just giving the new facebook thing a try. DC, I went to my GP yesterday to have a bit of a discussion about several things and he really didn't seem concerned about the tingling. I guess my main fear has been MS but he was fairly definite that I don't have that! I will definitely talk to the neurologist in a few weeks but I am feeling a bit better about it. Cathy

Thats good to hear Cathy, I have also worried about MS but I have never had any symptoms until I got this infection so I don't think it could be that either, but its hard not to worry when you get tingling and burning sensations. Im still convinced its the physical symptoms of anxiety that are somehow amplified by inner ear dysfunction.

DC

Hello all...worked for me, too!

Stay well all...and it's great to put faces to names xx

I have to admit to being a mixture of excitement and apprehension heading up to my first ENT appointment as I am sure you all are/were.

Do any of you have some advice of the questions I should be asking? Things I should remember to tell him? I've got just over a week before I go so there's no huge rush.

Thanks!!!

\Tanya

Hi Tanya,

Well...hmmm, just be sure to tell them all your symptoms and what makes you feel worse, better, etc. It might be a good idea to start making notes of what you what to tell them and put it into some kind of order. I found that at my appointments I would just blurt out whatever I could remember at that time.

Be adamant and strong when speaking with the ENT person about what you are going through. The ones I saw seemed to think they knew everything when in actual fact, based on the things I have read here, they knew absolutely nothing except the term 'Labyrinthitis'.

Let us know how you get on.

All the best, El xxx

Hi, El!

I am too anal retentive not to take notes with me, I even did it when I was "healthy" and saw my GP!

I'm seeing a consultant privately (probably only UK residents will understand the significance of that, but it means the cream of the crop) so I'm hopeful he'll know what he's doing (and I was reassured by his secretary when I told her what I was being referred for she gasped and called me a "poor dear" so if -she- is that familiar with it... anyway, at this stage, because I haven't seen him yet it's speculation, but I'm hopeful nonetheless.

I will -definitely- keep you all posted :D

\Tanya

Hello all,

I am new to this blog. I have been suffering for 4 weeks with what my GP says is Labrynthitis. I am like all of you, good days and bad. I see the ENT next week and am not too hopeful for a successful treatment. One thing I was wondering is if anyone has had the steriod injected into the ear and if it was successful?

I have read pages and pages of your blogs, and saw the power line comments. I too grew up drictly under them. I wonder if it caused a weakness in our ears.... hmmmm any thoughts?

Thanks for your blog, it sure does help knowing I am not alone.

Vic

I have been suffering from what my doctor also says is Labrynthitis since the end of November, so going on 4 months. The first time I seen the GP, she told me it would be gone in 3 weeks - nope - still here. Went and seen an ENT in January, he told me it could take months, it's still here. Made another appt with ENT, I just want to make sure it's not something else. I've never in my life had these strange sensations - floating, pressure in head, behind nose?? I'm about to go out of my mind!

Hey there! Did anyone see the recent HOUSE episode Monday, 3/16? There was a real reference to Labyrinthitis!!! A friend of one of House's sidekicks had complained of similar symptoms. He told Taub that he had Labs and Taub had him lay all the way back on a table. Then he slowly turned the guy's head far left and then far right. The doctor told him he was doing this to try and shift the calcium deposit in the patient's inner ear. And guess what? it worked LOLOLOLOL It should be so easy, huh?

I had words with my designer today. Today was my first day back at the college and he got snarky again about something we had already agreed on. Long story short, he admitted that he was frustrated with my inability to retain information. I then told him what I had tried to tell him weeks ago.....about the Labyrithitis, and how I felt it was clouding my brain. He still cut me off, but said that it made sense now since it is all medical.. He wasn't at all sympathetic. I do not believe I'll stay with this job after this last show. It's just too stressful for me. I'd been feeling better. Dizzy spells are lessening, but my eyes are tired and sore. Will try to see my eye doctor tomorrow. I have been back on my vitamins as recommended on this site and I think it's been helping. The iron especially. Still wake up with sore legs, but a couple of aspirins usually do the trick. Thanks to all for your responses..... Laura P - stitch witch!

Hello all and welcome to newbies!

Heather, the few symptoms you mention sound like Labs symptoms. Do you have any dizziness or imbalance, heightened state of anxiety, sore eyes, headaches? Mine first struck on Sept. 15 and I went to my GP the same day - she said it sounded like an infection of some sort. I changed my GP a month into it and my new GP told me it would be gone in eight weeks or so and that it sounded like an ear infection.

I ran left and right like a headless chicken to any medically qualified person who would see me - they all said no more than eight to twelve weeks. I have just gone past the six month mark and am feeling a lot lot better - I'd say I am at around 90% now. No thanks to them at all. They just seemed to disregard my fears and worries and just exacerbated them by not explaining things to me - obviously because they were clueless.

Try reading through page 10 of these comments - there are a lot of suggestions on how to cope with Labs and related conditions.

Best, El xxx

Thanks El - yes, I can relate to the anxiety, worrying if this is ever going to go away. Your blog gave me hope and from some people I have talked to, they also said they felt much relief after the 6 month mark, so maybe in two more months all of this will disappear. My GP gave me meclazine - knocked me out, no way I can take that. I'm just sick of this feeling and want it to go away. I have appt with my ENT doctor on Wednesday - I'll let you know what I find out- hopefully some reassurance that this will end.

Did anyone watch the recent HOUSE episode? Dr. Taub meets up with an old friend who mentions that he was diagnosed with Labyrinthitis. Taub then has him lay back on a table and slowly turns the patient's head from left to right and then has him stand back up. The friend can't believe it but his symptoms are relieved! Dr. Taub tells him it sometime works to shift the calcium deposits from the inner ear. IT SHOULD BE SO EASY!!! LOL But I was impressed that my labs had a small part on HOUSE.

As for working with my costume designer - we had words yesterday. The dynamics aren't working for us and the stress/anxiety aggravates my Labs' symptoms. I tried to tell him again about the Labs and he seemed to be relieved to blame my inability to "retain information" my fault (medical condition), rather than to think he's difficult to work with - odd, huh? I don't have the retention/memory problem with my other jobs?

Anyway, I worked too many hours last week and I'm enjoying my day off today. Had a friend help me clean house, but then I must've overdone it because I started to feel woozy. I also eat more, because I think I'm trying to avoid the nausea. Feeling better now. I've also started on the vitamins again because of what I've read in these posts and I think they're helping! Thank You! Laura P - stitch witch

Hi, I'm new here. I was diagnosed with LABS about 4 weeks ago. I'm still feeling the spins. I have just recently started experiencing constant muscle twitches and strange electric sensations all over my body. It is very uncomfortable and it has been non stop for the last few days. Has anyone else felt these same symptoms alongside the Labyrinthitis?

I hope the best for everyone on here :)

se7en - I'm surprised too by the muscle issues I'd been having. Someone did explain here on the blog that we are constantly working to keep our balance while standing, so it makes sense that our muscles would feel more fatigued than usual. I've started back on my vitamins, esp. iron and E and I do think I'm improving. The other night I actually slept straight through, which I hadn't been doing since January. My biggest complaint is feeling so tired. And it hits so suddenly. I'm planning another appointment with my GP to review the symptoms and request bloodwork - again! If I take the meclezine I'm basically useless for 48 hours. It relieves the nausea but seems to exacerbate my fatigue. I also have Klonepin, an anti-anxiety med. and it also knocks me out. I've taken Klonepin in the past and prior to having Labs, I didn't react that strongly to it. Now if I take it at night to help me sleep, I'm exhausted for 24 hours. Interesting condition though. That a simple "inner ear" problem could cause so many symptoms? Laura P

Right.... Trying again

Hi Laura,

I think it was me that said your muscles would feel more fatigued due to the fact that we are trying to keep ourselves balanced! This possibly also goes for neck pain as I know I often have a stiff neck because I am trying not to move my head.

Se7en - I still (even after 4 years) suffer from electric shock sensations in my head which can be scary and I know lots of other people have mentioned them in their arms and legs so I wouldnt worry too much about that.

I'm still suffering quite badly at times. Went into our local DIY store last Friday and they have one of those moving walkways which doesn't have stairs, it is actually flat, and it is quite steep. I absolutely hate it. The week before I had been in by myself and went up and down no bother but this time I was with my hubby and we got off on the way back down and I took a mega dizzy spell. It only lasted a few minutes but it was really horrible and this is what I hate about this illness, you just don't know when it is going to hit. I can be fine one day doing a task and then the next doing the same task I can suffer like this.

Anyway, must keep fighting. My son is home from Uni tomorrow so that will cheer me up.

Happy Motheer's Day to all of you who are mothers and lets be thankful for the small things in life like breakfast in bed from my 12 year old daughter - really sweet!

Sandie

What a beautiful day it was here in my home state. I spent the day working at the greenhouse. - Notice the time? Fell asleep at 8pm and woke up 4 hours later. Now I'll be up a few hours and then go back to sleep. Sleeping straight through 8 hours is rare anymore. Anyway, I've noticed something with my condition. When I have the dizzies, mostly an ongoing mild sensation, throughout the day, I find that my thinking processes are more clear. When I'm not actively feeling dizzy, my brain seems more foggy. I think this is because my brain is too busy compensating for the dizzies! Does this make sense? So If I can reach an equilibrium - perhaps I could think clearly and still get by with moderate dizziness.......... Well today was great. I felt good mentally and physically. I was up and down ladders watering plants etc. I brace myself each time reminding myself about my condition, but did fairly well. There was only 1 time when I almost lost my balance. I feel fortunate to be able to do that much, but try hard to push myself further. Happpy Mother's Day to you too Sandie! My kids are older but still close by so that is nice.

Im no longer dizzy, just off balance, kind of feels like I have water in my head or Im on a boat rocking around, it gets worse after exercise or running around at work. I find I have to keep working through this feeling and keep pushing myself a little more everyday until my brain compensates and adapts. I also find certain lighting and stripped patterns seem to look like its shimmering as well, really odd. Also lining up at supermarkets seems to also effect my equilibrium as well, I start to feel an internal swaying and then my anxiety seems to kick up a notch.

Just some things Im going through at the moment.

DC

Hi DC

Just to let you know that I feel the same when standing in queues or any instances where I have to wait. I can be fine when doing the shopping or whatever but when it comes to the waiting I start to sway.

This has happened on and off for the last four years. And the weird thing is sometimes I am absolutely fine and can wait a good while and then other times I cannot wait at all. I know this is not all 'in my head' because I am a very patient person and will always wait my turn however long that might be, but I find myself getting very agitated and tutting and butting if people are 'wasting' time in queues i.e. chatting away to the cashiers, it drives me mad because I feel so bad!!

Take care

Sandie x

Vicky - By the time I got to see a specialist (Otolaryngologist), it was too late to save the hearing in my left ear. He said he would've given me a direct shot of steroid in my ear had I seen him 2 weeks earlier! As far as I know, getting the shot is a last ditch effort to improve hearing, not really for dizziness.

Everytime my hearing in my good ear feels like it's going down, my docs give me steroid pills to take for 1-2 weeks. I got that full-headed/rocking the boat sensation few months back and the steroids got rid of it.

Katie - Work has been piling up so I haven't been on in awhile. I've been through my share of bad relationships to last a lifetime so that's why I keep that poem close by. I did finally find someone worthy : )

I'm sure you will too soon (if it hasn't happened already)...you seem like such a vibrant and spirited person!

DC - I had the same symptoms during my 3-5 months. I'm in my 6th month now and mostly symptom free. Will keep my fingers crossed you will get better soon too.

Hope everyone else is doing great!

Just to comment DC and the shimmery patterns. I have had that at times too. My sister in-law said that is because our blood pressure is elevated during that time. Does yours hang on for a little while then leave? My first time was horrible, not only was I on my second day of labs but the shimmery pattern too. I thought I was loosing it for sure, or a tumor.....

I am feeling better today. This is day 3 of feeling 75%. My doc gave me Valium so I can sleep through the night. The first night I woke every hour, but the second night I slept 12 hours! I have not felt this good in over a month! I know it is still hanging on because I feel dizzy after sitting at the computer but I am not taking any drugs during the day now. Of which I am glad!

Hugs to you all,

Vic

I also got dizzy sitting in front of my PC originally but that has now passed, is anyone getting sinus pressure in the nose, i still have pressure in my ears and get alot of post nasal drip. I think I may have got my labs from a sinus infection as my GP kept telling me that I had sinusitis.

DC

Hi all- It sounds like there is some improvement which is great to hear. I just want everyone to know that there is hope. I am nearing my 6 month mark and feel like I have finally seen the light at the end of the tunnel. Last week was my best week since this all started. I had a few days where the dizziness seemed to have cleared and that is amazing after being dizzy 24/7 for 6 months. This week hasn't been quite as spectacular but it hasn't been horrible either. It seems like this is a 3 steps forward 2 steps back recovery. But eventually we will all get to the end of it. I am still doing VRT which I do believe is helping and trying to stay active. My dizziness is pretty mild now and I can get through the day a little easier. I had pink eye in both eyes a few weeks ago and ever since then my eyes have felt extremely tired. Even after a good nights sleep it seems that they never feel rested. I don't know if this is something lingering from the eye infection or if it is another symptom that comes with labs. Has anyone else experienced this?

DC- I also get sinus pressure in my nose and cheek area from time to time. It is strange all the side effects that come on due to labs.

Everyone hang in there, we will beat this.

Laura

Laura - from the way it sounds, most people are seeing some relief after the 6 month mark. I'm on my 4th month of this nonsense - seeing my ENT again today. I need some reassurance that this is going to go away. I too, have experienced the 24/7 dizzy/lightheadness. I have lots of pressure in my nose and cheek, and my eyes feel really tired too. So much pressure in my head also. Strangest thing I've ever dealt with.

Heather- I promise it will get better. I know it is discouraging, having good days and then going back to bad days is so frustrating. If I look back over my whole illness though I know what I consider to be a bad day now would have been a good day about 2 months ago. Even if the progress is extremely slow it is still progress. Just think how much more we will value our health and time and when this goes away! The pressure is weird, it is there some days and gone on others, I have a hard time trying to pinpoint what causes certain symptoms, there seems to be no rhyme or reason to it. Hope your ENT appt. goes well, let us know if they have any revelations:) Have a good day.

Laura

Hello Everyone Has been a few weeks since i have posted, not been having a great time really. Had yet another ear infection and more antibiotics, sure it is viral though and not bacterial so like it all will take time!!!!

Been back on the boat today, pardon the pun and been having really funny sensations on my scalp almost tingly cold feeling that lasts only a few seconds then passes. Any one had anything similar.

Heather i also have terrible pressure in my nose and cheek, thick head and pain in my eye on affected side.

I have my balance tests on Monday, which not sure will show anything, or what they involve?? Also waiting on MRI, hope this is done soon as like most of you i am sure you start to think this is much more than an ear infection!!!!

Hi to cathy,El, Laura, Sandie and Katie Hope you are all well and if not fully recovered well on the road.

To everyone else take care and keep fighting, love to hear your thoughts on my questions and anxieties Ruth xx

Hi Everyone

Well... It's going to be old school posting style for me. My PC has a hissy fit every time I attempt to go for the new funked - up version :)

Ruth... Nice to hear from you. You've had another ear infection!? That stinks. It would be lovely just to get two minutes peace. When I went for balance tests he just shoved me in different directions! Total waste of time. That was at Gartnavel in Glasgow. Is that where you're going? If not maybe you'll have some more luck. The tingly cold sensations sound more like flu-type symptoms, maybe they're just connected with your latest ear infection? Anyway let us all know how you get on honey :)

CL... That's very sweet:) Not tempted at all! I'm off back to my nasty high stress chefing job soon and I have to humour 20 mini Gordon Ramsays for 60 hours a week. Oh the joy :) Hope you are doing well? X

Sandie... How are you doing? I was just reading through your last posts, you seemed to be having a rough time of it? Are you feeling any better now?

Angela... How are you?

Lots of love

Katiexxx

Hi Ruth, it's good to hear from you. I've been wondering how you were. Good luck with your balance tests - I had them in January and they were okay - the one where they put hot/cold air in your ears made me feel like the room was spinning but apart from that I thought it wasn't too bad. Mine didn't show up anything but apparently that is quite common...

I am going quite well, am functioning fairly normally most of the time, but I do get dizzy and feel off balance sometimes, definitely more at "that time of the month". I have definitely improved a lot but I also think it's a case of learning to live with it. I am still having a lot of tingling/burning/pain in my arms hands and feet and a strange vibrating sensation which really worries me! and am finally going to the neurologist on Tuesday - will be very interested to see if she can offer any answers!

All the best everyone

Cathy

Hurray! I've had 3 nights in a row sleeping at least 7 hours straight through! It has been a long time since I've been able to sleep straight through. And I'm actually feeling better during the day! I'd started with the vitamins and then this week started taking a sudafed each morning which I'd hoped would help with the congestion. I guess it's all helping. My eyes are still tired and I have a low grade headache behind my eyes. I'm scheduled for an eye appointment next week. I'm probably due for some new lenses. So I'm keeping my fingers crossed!!!!!

Oh the funny thing is - when I am sleeping so well, my dreams usually involve water in some form. Either I'm on a boat, or standing by a lake or waterfall.... so I'm guessing I'm still dizzy/floating in my sleep but it's not enough now to wake me up. Weird huh? Laura P

Here is a link with some VRT exercises, Im going to start doing them and see if they help my balance, although working out and dong normal activities seems to be really good VRT, these additionally exercises may speed up our recovery.

http://www.michiganear.com/library/B/balanceexercises.html

DC

Just out of curiosity has anyone read that the herpes I - cold sore virus can be a culprit of labs? I get cold sores at least every other month and had an outbreak on my upper lip when this all began??? I don't know, I'm just trying to weed things out - this is the most frustrating ordeal I've ever been through.

Had my ENT appt - I demanded a CAT scan, so I am getting one next Monday, he is also sending me to an audiologist to perform the balance test - EEG?

It's strange how one symptom can disappear and then another one arises. Now I have the pressure again - also in my ears, pressure in my face, nose.

This is driving me nuts - has anyone gotten on some anti-anxiety medicine to get them through this?

It could be any number of viruses responsible for Labs, the problem with viruses is there are no cures for viruses we just have to allow our bodies immune system fight it off. The virus that causes Labs may already be gone, but the damage to the inner ear is what leaves us with symptoms, now our brain and CNS now have to compensate which can take some time. I have had pressure in my nose and ears for about 3 months now, not as bad as I had it initially, so I feel Im progressing.

Hi Heather, Yes, I have read that the herpes virus is thought to be a culprit - I don't know if there's any proof but I have read about it on the internet. I too have always been prone to cold sores - it makes sense as it's a virus that stays in your system. I know what you mean about symptoms changing all the time - it's frustrating.

Cathy

Cathy and Heather

I'm also prone to cold sores, how annoying. I take a Famvir whenever I feel one coming on and I use Abreva. Both work well to stop the onset. It is a virus.... My good friend who lives out of town, just told me that she went through Labs twice in 2 years. I'm guessing it's the same virus but was dormant for a while. Anyway, she's convinced that it is all related to menopause and is now taking "bio chemicals?" Well I'm also in menopause and wondering if this is all related. Anyone else having similar symptoms - with menopause? Laura P

Oh - another great day!!! Hopefully I'm through the dark side?

Hello all,

Hope you are all as good as can be expected! Yeap, I, too, suffer from cold sores - they appear whenever I am under even a slight bit of stress and I have often wondered if that was the cause of my labs. We'll never know and can only speculate and in my case, my money is on the cold sore virus!

I am doing a lot better and would say I am still at around 90%. I never thought I'd get here but I did and am positive that in the not so distant future I'll reach 100%. It will be seven months on April 15 but even if I never get better than I currently am, after what I went through I'd be grateful to feel even this way forever.

Heather, personally, I would stay far, far away from anti-anxiety medicine. You're much stronger than you're giving yourself credit for. I suffered from severe facial/head pressure during my ordeal and it eventually passed - I did a lot of steam inhalations which helped. I also had the sore eyes but that is passing, too. Stay strong and be as positive as you can be. I am sure your CT scan will come back clear as your symptoms really do sound like Labs.

Stay well everyone, El xxx

HI everyone, I am new and have had a dagnosis of labyrintitis for just under 4 weeks. I am a first year teacher, a mum of four, aged 38 and a tough cookie but this has me beatically both physically and mentally. Even typing is like hell......How long will my employer put up with my incapability to do my job? AND the big question, how long can I expcet to get paid as I have a wedding in 20 weeks to pay for? It is all going belly up for me and I just need someone to talk to who understands.

HELP!

Julie x

Hi Ruth,

I'm not too bad at the moment though still off balance and dizzy but not all day, so on the mend yet again - will I ever get there?

I have also had the tingling scalp sensations though I have not had them for a while so don't worry too much about them they are part and parcel of Labs. I also used to get sharp pains above my left ear from time to time which would only last a minute or so but boy were they scary. They used to make me feel really ill, I don't know if it was the fear or what, I was so scared in case it was something more sinister, but they would knock me for six. Over the years I have noticed a pattern, though it did take me a while to click and they nearly always come a week or so before my period was due. I also get weird feelings like warm water is trickling over my head.

Hope your balance tests go ok, let us know!

Katie - yeah - getting there again. The dizzies are getting less but the asthma is getting so much worse. I've been taking the nasal spray for a couple of weeks now and not seeing any benefit as yet, though I am getting less dizzy and lets face it, it's all connected! Just get so sick of it being one thing after another, what have I done to deserve all this - I am a good person (sometimes), haha! Good luck with all the little cheffies - I can just imagine the fun you will have!

Heather - I agree with El - stay away from the anti depressants. You have to be strong and remember that this does get better. Even if you don't recover fully as I have not (I have had this for 4 years and am still struggling with it), you get good periods and life is still worth living!!

Laura - I am 48 years and don't think I am in menopause as yet but it must be hovering! My periods are regular but have shortened over the last few years though still VERY heavy. My cousin has suffered the same as me in the past with the dizziness etc and she had a hysterectomy a few years back. Since having this she only gets the odd dizzy spell now and again so - yes - I think it can be all related and let's face it most of us are women and a lot of us are in our forties!

Hi Julie - welcome to the board. So sorry that you are suffering with all this junk at the momemt. Where are you located?

This must be hell for you with four kids as well. How old are they? I was lucky in that my youngest was 8 years old and my oldest two 17 and 15 when this started so no little ones to take care of. If you are UK based your employer cannot finish you when you are on the sick although if it keeps on happening like it has for me, I don't know where you would stand then. I have not had any harassment from my employers, they have been very understanding (to my face anyway!) but I know some people on here have gone through hell with theirs. I actually feel sorry for my employers having to put up with someone like me!! With you being a teacher I would think that they would be quite understanding.

I do hope you are one of the lucky ones and that you recover quickly.

Take care everyone.

Sandie x

Hey Julie - It's a tough call. Read through some of the prior posts. I fortunately work several part time jobs and actually only called off twice in 4 months. I feel very fortunate that my symptoms haven't been as severe as some others I've read about here. It is important to maintain as much of your regular lifestyle as possible. You really have to force your brain to compensate for the illness. I was doing what they refer to here as the gazing exercises early on, without realizing what they were. Whenever I felt dizzy I would focus on something and breathe through it. Occasionally I did have to brace myself and close my eyes. And there were a few times I had to suddenly sit on the floor. (Try explaining that behavior! LOL) My worst problem had been working at the college with the costume designer. He couldn't understand why I wasn't able to retain any info! I felt so stupid all of the time. But I also felt extremely overwhelmed and I think that is because this was a new situation for me. Stress exacerbates the symptoms! Anyway, we finally "had words" 2 weeks ago and I told him again about the Labs and how I felt it was affecting my brain activity. He listened this time and we worked things out beautifully. Hopefully I'll still have a job there next fall. But whatever - life goes on I'll manage...

It is scary and confusing and DRAINING! Rest as much as you possibly can and keep a stable surface always close by. I still find myself leaning a lot. Explain to your students what is going on (only as much as they need to know) and what to expect. It'll work out.

As for previous text re: anti anxiety meds. I have Klonepin which I've used in the past HOWEVER when I tried to use it during the Labs experience I only made myself exhausted! My body couldn't tolerate the added sedation of the Klonepin. So I now avoid it!!!!! Like I said the iron and sudafed have been working well. Laura P

Hi julie - I'm also 38 and have been dealing with this so called "labs" also, for 4 months! I know exactly how you feel and thank God for this website - it has kept my sanity - what exactly are your symptoms? I am having a CAT scan done tomorrow of my sinuses - if that comes back normal, I'm heading back to my family doctor

Hi Everyone Julie welcome to the site, i really understand what you are going through. I was told i had labs in January after a bad bout of flu at christmas and still struggling. My ear continues to be sore, congested, headaches and feeling of pressure in my eye and face, which sometimes feels numb. Anyone else had numbness? What are your symptoms? I am 42 years old, so just a bit older, mum of two and work as a specialist nurse in a hospital, work has been difficult but i have been trying to go every day and last as long as i can. My dizziness is more like being on a boat and my nausea is now a bit better so manage okay, worst is the pressure and headaches after a day at work. Hang in there!!

I went for my balance tests today and i know you all told me that they would not show anything, but my experience has to beat them all, she could not get the camera to work so had to rearrange appointment, bloody typical NHS didnt even have a back up one!!!!! Got my MRI in a couple of weeks and think will feel better when i know that there is nothing sinister going on...

Julie what kind of symptoms do you get from your sinuses? Mine seem to be bothering me a lot lately...

Cathy and El really glad you are doing well, Laura not sure about the menopause, i am not quite there yet, but sure it could make things worse.

Take care everyone and thank god again for this site.

Ruth xx

Hi Katie

I have been not too bad the past 2 weeks, up and down still, still waiting on my appointment for the spinal lumber puncture, pure dreading it. Terrified is the word. Doctor gave me new meds I have not started them yet, too scared, defo think they are going to make me sick. The Neurologist has told the doc to start me on them.

My employers where back out visiting me, they have stopped my money and told me I will be probably be sacked now, just waiting on the paperwork to tell me. Dont know what I am going to do. Am fed up boring everyone with all this, sorry doll.

Angela x

This site has made me feel better - no one knows what i am going through now the worst symptoms aren't visible - I think people think that i am just making a meal of it and using it as an excuse to skive - not so - in fact i am really worried about how long its all going to last and will I ever be able to do my job again - I was diagnosed 3 weeks ago after a violent attack of vertigo and dizzyness. After three weeks I have memory problems, cant get words out, heightened anxiety. Still have agitation - i have read lots of posts but havent seen the sympton agitation - I've got constant buzzing and hearing loss in my right ear. Everyhing i do its like i have to force it and i feel tired afterwards. Feel mentally exhaused and yet my brain wont stop working. I am a community fundraiser and just want to get on with my job. I did some gardening today and that calmed down the agitation. Thanks for reading - I feel better now.

Hey everyone Glad to read the updates - Why the lumbar puncture? What are they looking for, meningitis???? Woke up this morning feeling great, until I had my first sip of coffee which had a strong rusty taste. Shortly after I became very ill, similar to food poisoning? I did have to call off today. My 3rd in 4 months, though I do think this is really the flu. I'll know better tomorrow.

Talk about brain fog! The other day I was cleaning out my vacuum cleaner and then completely forgot how to put it back together. That was a scary moment, but then I reminded myself to just take a breather..... Take care everyone, spring is on its way!

Laura P

Hi Angela

So sorry to hear about your job. Keep sight of the fact that you are the important one here and your health comes first. Don't persecute yourself, you are not faking this thing, it is awful to suffer from it and there is really nothing you can do apart from concentrate on getting better. This illness takes time to go and it is small steps along the way, (sometimes very small!).

Carol, sorry to hear that you are suffering. Agitation is part of the anxiety which is all part of Labyrinthitis. Nearly everyone with Labs suffers from anxiety at some stage. For me, I was a couple of months into it when I started to get anxiety. I could be sitting doing absolutely nothing and I would get this awful feeling that would whoosh over my upper arms and I would get the feeling like I wanted to run somewhere. I don't know where, because I would already be in my safe place!!! I would also be highly agitated at these times because you don't actually know what to do with yourself. I used to have the curtains slighty open at night in my bedroom because I hated the idea of being in a dark room and I couldn't wear a watch because for some reason I thought it was cutting off my blood supply!! Strange or what? So don't worry too much about that, it is very normal. I suffered with this for a couple of months in the early days (four years ago) and have never had it since and I'm glad to say I wear a watch now, haha!!!

Laura - yeah - spring is certainly in the air, my garden is starting to look pretty and I can sit out in the sun, whoopee. It does make you feel better doesn't it.

Take care.

Sandie x

Hi Carol,

I had the same exact symptoms as you in the beginning. Things may seem scary now but do know that it does get better. I worked from home for the first 2-3 months due to the constant dizziness. I'm in my 6th month now and am almost symptom free so hang in there.

Note on your right ear - I lossed the hearing in one ear permanently cause I couldn't get to see a specialist in time. They can't do anything after 4-5 weeks. Wish someone had told me so I could've prevented it. Hope it's not too late for you.

- CL

Angela....

My God.... What a bunch of ars*h*les your employers are! It's just unfair on a whole new level. As if it wasn't tough enough. Listen sweetheart I really believe their day will come, and the old karma thing will kick in :) I know this is almost impossible but try not to take what they are doing personally. They only see the financial side of things. Not you, the person who's left struggling because of their actions.

Something I have noticed though Angela... Since you started posting here, you have mentioned your work in nearly every single one of them. They have clearly been a huge cause of stress and worry for you through all of this. Had they've not hassled you and not been on your back 24 - 7. I'm sure you would've had a better time of it. They've made an already bad situation intolerable and they should be ashamed of themselves. Just think how nice it will be to free of those bast*ards! They can shove their company doctors up their a****!

As for your job.. I would have a serious look at a work from home alternative. A 'plan B' to generate some kind of income. I mean... Really do it. You know what you're good at. Have a think about it. If you can sort something out, all that stress will be gone. You can work at your own pace, nobody glaring or breathing down your neck, and it would stop you from putting a time limit on your recovery and take all this pressure off you.

As for the latest batch of smarties you've been given. What are they hoping they'll do? And for the lumbar puncture.. Try not to worry too much about that now. Day at a time doll. Just do your research so you know what questions you want answered.

The fact you are up and down and the last couple of weeks haven't been too bad is an excellent sign. If it's not getting worse. I would see that as a really good thing :) You hang on in there sweetie and come on here and rant as much as you like!

Lots of love

Katiexxx

Hi, all.

Yeah. So. Went and saw Mr Special ENT Otologist Guy. He mentioned that the herpes/cold sore virus could have certainly caused my Labs (how strange that you all are now talking about it). Checked my hearing and suggested that with some physical therapy I could begin following a road to recovery.

Today I had my first appointment with the physical therapist and answered all of her questions which were the same as the questions asked by the ENT.

Her conclusion? MAV (Migraine-associated Vertigo). Now I'm all peeved off and deflated. So, I'm sitting here pretending to research MAV and thanking the heavens that I correctly told the Physical Therapist that asking me to completely give up coffee will land me in prison for murder (NOT a morning person, me) and I can't help but feel frustrated and annoyed at the "unfairness" of it all. Misdiagnosis happen, surely, but now I have to "start again"? WTH?

Hugging you all and sending warm, healing thoughts (I'm certainly not using them at this moment in time)

Much love, T

Hi all- Angela, I feel so bad for you. I hate that your employers can't understand how terrible this is. I think it makes it harder for people when we look like we feel fine and they can't see any signs of sickness. I have always had people tell me it doesnt look like there is anything wrong with me and that just infuriates you. It is a hard thing to understand unless you have gone through it. In the beginning I missed about a month and half of work and my employer was pretty understanding but I was afraid to let it go on much longer so I returned to work even though I felt terrible. Some days I know I was worthless, I was just a body at a desk. I do think not having the stress of work and when you have to go back hanging over you will help. I know that was very hard for me. You can't rush it. I promise things get better. I am just into my 6th month and things have started to turn around. It has been very slow but there has still been progress. I have been doing VRT for a few months and I really think it has helped. I know being active and moving is the last thing you want to do but I promise it helps.

Tanya- MAV and Labs have very similar symptoms. I was told at one point that they thought it was MAV but I was never given any medication for it and now I have started to take a turn for the better. Sometimes I think doctors just give us a diagnosis whether they know for sure or not. Keep researching and looking for answers.

Hope everyone else is doing well.

Laura

Hi Tanya, and everyone,

I too have received a diagnosis this week from the neurologist - she says I have Menieres. I'm not really convinced as from my reading you have to have the spinning vertigo and hearing loss and I have never had that!

When I talked about labs she said it's been going on too long to be that - but there are so many people on the internet who have labs for several months and then recover! When I asked about MAV she said it would be more of an 'attack' than chronic symptoms - but also I have read about many people on the different forums who have constant symptoms. Although I thought people with Menieres had attacks rather than constant symptoms!

So I don't know what to think either - especially as I was really going to the neurologist to ask about tingling/burning sensations rather than the dizziness as I thought that was pretty much under control. She has prescribed antidepressants not for depression but to help me sleep better and to mask the strange sensations - not really what I was after - I would really have appreciated an explanation as to what was causing them!

So I am feeling a bit lost at the moment - although I'm not really sure if giving a name to this condition matters anyway. It seems that no matter what it is it can be exacerbated by fatigue, hunger, another virus eg a cold etc. And diet seems to be crucial in all of them as well...

All the best to everyone Cathy

You are all so wonderful! It is just a blessing to me that I fell into this site - it's the only one of its kind that I've found so far.

Work can be so frustrating and I'm saying this in the general sense. I've left good jobs in the past because I didn't want to deal with the stress and crap. I knew then how it would affect my health and I also feel it now. I traded in my last fulltime job (profit sharing and all) for the three part time jobs I now have. I'm really tired some days, but most days I'm stress free.

I did have, I think, the stomach flu on Tuesday and sure enough, my dizzies came back to plague me the rest of the week. And along with that the restless sleep patterns. Oh well... I have eliminated my Dunkin Donuts coffee with espresso, but I refuse (I think) to give up coffee altogether! I have an eye exam scheduled for Monday, but I think I need a re check with my GP to let her know I'm still having symptoms. I still have problems with my right ear and I am suspecting some hearing loss.

I do believe in Karma and I believe in "letting go..." That has helped me before with my jobs and relationships, I hope it can help some of you also.

Laura P

Hi Cathy

Menieres is ALWAYS associated with hearing loss and disabling vertigo. That is what I have always been led to believe. You can be fine for months and even years between attacks and it is not constant dizziness like what we suffer. MAV, is a strange one, as it can be this even though you do not suffer the pain of a migraine.

I am living proof that Labs does and can go on for years. It is not the virus that stays with you for years - that leaves the body pretty quickly, but it is the damage it leaves behind that is the problem. And, you are right, it is all made worse with every further virus, cold, hayfever etc which bungs your head up and magnifies your problems. Also, like you, I need to eat on a regular basis as I feel really weird and light headed if I don't! And you do get more tired than a 'normal' person because your brain is working that much harder trying to keep you steady!

Please try and steer clear of the antidepressants as in the long run they really will not help - the same with other drugs prescribed for dizziness etc. They only mask the symptoms and dull the brain. Your brain needs to compensate for the damage the virus has done to your inner ear and it is not going to do that if it is constantly dulled!

I know I have been suffering for 4 years now but for everyone else, you should recover much quicker. I do have other things going on that have probably made my symptoms worse for all these years such as the severe allergenic rhinitis (all connected to the ears) and my low ferritin levels (which also causes dizziness and balance problems). Ferritin (iron reserves) takes years to deplete, so this could have been my problem for a long time.

Take care

Sandie x

Friends keep telling me to go private and forget about the NHS but what the hell are they going to do for me? I have heard so many stories of people on here getting expert 'specialist' treatment and coming away with the same old diagnosis each time!! My friend paid to go private and actually saw the same fellow she was seeing at the NHS hospital!

Cathy, Get another opinion, this is one reason Im hesitant to see a specialist at this stage, by the time they figure out what's wrong with me I'll probably be better. Im going into my 4th month now and every week I feel a little bit better, Im still doing acupuncture 2 days per week, exercising everyday and taking vitamin and herbal supplements, the way I look at it is if I am making progress thats all that matters. In regards to the burning tingling, I still get it but not as bad as before and its mainly in my feet and ankles now.

Hi, Cathy!

Hi, everyone :)

I completely understand your confusion, Cathy. I had been under the distinct impression (having been told) that I had a certain condition only to be then told that because my symptoms are "different" (I don't have positional vertigo, it's more of a constant thing though I don't feel nauseous most of the time) and I now feel as though I'm back to Square One.

Two things I -have- taken away from the whole visit with the physical therapist are A. I went to the appointment without a -shred- of anxiety and even shopping can make me feel anxious so that's a major milestone for me and B. I -did- significantly increase my chocolate (known migraine trigger) around the time that my symptoms moved from Labs to constant so I am going to try, as she suggested, cutting out the chocolate. (I was the "occasional" chocolate eater and then started having chocolate soy milk in my coffee every morning because it tasted better so while I don't think that it's the coffee that's triggered it I do feel that the chocolate may have as that's what was "new" or "different".)

She advised I go back on to Nortriptyline. I had been taking it because my bowels are depressed *laughs* No, it has muscle-relaxing properties and was to help ease my IBS. I stopped taking it because I didn't feel it was working only to come full circle the day of the appointment with the PT to realise that I do need to be on it as it helps tremendously. I started taking it again that night and the results aren't immediate, but it seems to make sense as there are now two separate health "issues" that call for it.

I've also been reading about links between Migraines and IBS so that's some interesting stuff.

Of course, I will keep you all posted about my results going chocolate-free and adding the anti-depressant back in and I'm still keeping my food diary so I can closely monitor and easily go back and check how I've done after certain foods, different triggers and the like.

One thing, however, that made scratch my head was that the PT wants me to pay attention to my "cycle" regarding hormones and migraines (my "freewheeling episodes") as there can often be a link between them but I'm confused. I don't get a "monthly" as a nice side-effect of the birth control I use and haven't suffered from PMS/PMT since I got clear of puberty so I'm not sure -how- I'm supposed to keep track of it!

I'm really of a mind to start Ginkgo Biloba but am hesitant until A. I go back to my Gastro to make sure he thinks it's OK with my IBS and B. investigate more the mentioned possibilities of allergic reactions as I have enough of those already, too!

(Yes, I am often told I should have been a bubble baby ;) )

*hugs you all*

Hanging in there.

Hi

A couple of my posts have not appeared on here, just wondering what is happening.

Might it because I did not click on the link for facebook? I'm not on facebook!!

Sandie

Ha!

I have -another- one for you.

My dietician (trying to help calm my IBS) screened me for something yesterday that can, apparently, also cause the head and tummy symptoms I have.

Chronic Hyperventilation Syndrome

It -also- causes tingling in extremities so it -might- be something to consider if you suffer from that symptom.

http://en.wikipedia.org/wiki/Hyperventilation_syndrome

It's not the breathing-into-a-bag type of hyperventilation but basically comes from using only the upper portion of your lungs.

Anyway, I am now off to ANOTHER Physio who can apparently diagnose this.

I just wanted to share in the hopes that it helps someone :)

*hugs*

Hi Sandie,

It doesn't have anything to do with Facebook: I've just been too busy over the last few days to manually approve comments. (People who sign in using Facebook, Livejournal, TypeKey or OpenID have their comments automatically approved. So far the spammers don't seem to be doing this, thank goodness.)

Rich

Hi Rich

Thanks for your reply. I'm not complaining (really I'm not!). I appreciate fully that you are a very busy person and you are also a very special person for doing all this for us. This site has been brilliant for me over the years as it has for so many people.

Thanks again.

Sandie

Hi everyone, I just wanted to update you about my progress. I posted about a month ago. I do feel better overall, definitely less dizzy & my numbness on my left side of the head & arm is gone.

I do still feel tired, a little spaced out & having difficulty concentrating. Tingling in my left foot is still there as well. It’s been about 2months for me since I came down with this & I’m thankful that there is a progress, However I’m wondering do you guys experience above symptoms even as you are getting better? I have my bad days & good days, during good days I actually feel almost recovered, during bad days brain fog, spacey feeling comes back & I get really discouraged. Any thoughts? Thanks everyone for your support, even though I don't post often I do read all of your posts & it definitely helps. Thanks Katie as well for checking back & making us feel better! Natasha :o)

Hi Natasha

Yes, this is a normal progress for Labs. You will have good days and bad days. Your good periods will get longer and longer til you hardly notice it at all. You will feel rather like its one step forwards and two back but things will improve. It almost comes up all of a sudden and you'll say "hey, I haven't felt really bad in over a week now!". Hopefully, you will recover well from this, most people do.

Take care

Sandie x

Im still having ups and downs, feet tingle/burn from time to time, constant pressure in my ears, pressure in the left side of my face, slight rocking sensation and pressure in the back of my head. But even though I still experience these symptoms I feel there is improvement in my condition, its just very minimal and not something you notice day to day but more like week to week. Im just trying to relax and not worry about my symptoms to much, might drop in to my GP in week or so and tell him how I have been going.

DC

Tanya..

My god woman, you're so funny. You're attitude is pretty damm good irrespective of what weird and wonderful diagnosis you get! As for coldsores I've never had one in my life and I've also suffered from migraines since I was 13. I tried the no coffee,chocolate,cheese and eggs thing and it made no difference whatsoever, I now eat all of the above quite regularly and haven't had a migraine since I got over the labs. I also don't have periods. I was pescribed depo years ago to combat anaemia, so I've come to the conclusion I don't suffer from PMT, I'm just naturally a bit bad tempered :)

Sandie... I so agree with you when it comes to the subject of anti-depressents. I passionately believe taking them just stores up more trouble for the future, hiding your symptoms and emotions is not a good way to go forward. Everybody If you can. Face it head - on, everytime. What you said about you're friend and the NHS hospital and seeing the same chap when they went private, Spectacular:) Anyway... Hope you're doing well?

Natasha... Nice to hear from you. It's quite normal to get the weird symptoms one day and not the next as you are starting to recover. It's such a strange illness, unlike anything else! And I suppose that means anything goes:) Complete return of your concentration is probably the last thing to come back (and also in my case jumpy-eyes) My memory took a while and even after all my dizziness had left I still felt somewhat... 'Zombified' For want of a proper word. Just you hang on in there. You will beat it :)

Laura P ... I've got my fingers crossed about your hearing sweetie X

Lots of love everyone

Katie XXX

Ha, Katie, you do make me smile!!

I've had cold sores since I was a child. I used to get migraines (and thought I didn't anymore as my head doesn't hurt, but have since learned that you don't need pain to have a migraine. Go figure). I don't have PMT, as I mentioned, because I, too, was on Depo.

I'm allergic to Citrus and Cheese (milk) so I cut out Chinese (MSG) and I cut out chocolate (I was having Chocolate Soya milk every day in my coffee, so it really was too much anyway) and later in the week, when I have a couple of days to "recover" I am coming off coffee. Please pray for my husband, he still hasn't quite grasped that I am not a morning person even WITH coffee, poor man. That covers "The Five Cs" of Migraines so a couple of weeks from the final cut, I'll re-assess my symptoms.

Tomorrow I go for Balance Testing and I am NOT looking forward to it. Have any of you had it? From what I understand they put cold and warm water into each ear to make me dizzy on purpose and then gauge how I perform (walk, etc). I sense a massive case of Vomit-osis tomorrow :( I'll be sure to come back and let you know if it was, indeed, as bad as I had feared. I'm also having a blood test tomorrow to, apparently, determine if there is an auto-immune cause to my Labs.

Very "interesting" times, these!

I wish you all well and hope you're days are full of smiles!

*hugs* Tanya

Hi Tanya

I have had a few tests at the ENT namely the goggle test where you watch the red dot on the screen, the pressure test where they squirt air into your ears to measure the pressure and a hearing test. All were normal for me. The caloric tests I would not have because I was scared as hell. At the time I was very dizzy and was suffering from anxiety so it took me all my inner strength to actually go to the hospital so there was no way I was letting them make me more dizzy. One of the nurses did get a bit shirty with me because I refused but the other nurse was lovely and she said that whether I did the test or did not do the test the outcome would be the same - VRT exercises, so I decided not to go ahead with it. They can tell whether you go dizzy or not if there is damage there. There are lots of other tests that can be done to determine what is wrong but I was never offered these. I know lots of people who have had it done and were ok with it so you go for it girl!!

Be interested to see what this blood test is, keep us posted on that one.

Loads of luck with the tests.

Sandie

Hi Everyone - Tanya, I had the ENG testing this past Saturday - it's about 1 1/2 hours, and the part where they put hot and cold air in your ear is not fun. I was spinning horribly and thought I was going to come off the table - luckily, my doctor that did all of this was wonderful and his bedside manner was great, otherwise, that would have been the longest 1 1/2 hours of my life! I took my mom with me, I would suggest you taking someone also - it helps to have the support there. I haven't heard the results yet, I'm hoping they call me today. So this week, not really having much dizziness, but horrible pressure on the right side of my nose/eye, and ear. As soon as I hear my prognosis, I'll let you know!

Yippee!!!!

I have been to see my GP today and guess what - she actually agrees with my theories! A breakthrough at last, though I don't know where it is going to lead!

She said I seemed a little despondent, well excuse me, but I have suffered this junk for four years and yes I do get a 'little' despondent now and again, who wouldn't?

I told her that I thought I wasn't making a full recovery due to the fact that I had so many other things going on i.e. low ferritin, nasal swellings which could affect the inner ear and also impending menopause/hormone problems. She actually totally agreed with me and sympathised with my plight. I also told her that I did go on the messageboards on the internet and had done quite a bit of research so I knew what I was talking about and I also added that I know that this is not what doctors want to hear and she totally disagreed with me. She said, that by doing this it showed that I was keen to find out about what was happening to me and try and find ways to solve it. She asked what other people were saying and I told her it was pretty much the same as me, that GPs were not very sympathetic and ENT was a waste of time. She didn't even flinch! I suppose I was a little bit naughty saying that but what the hell!

Every other doctor has taken no notice of the fact my ferritin levels were so low though I do take iron pills to try and get them up. She was not happy at all that they were so low and has made it her mission (supposedly) to get me sorted.

It is so nice to have someone actually on your side and not to come away thinking that they couldn't care less.

I also said to her "I challenge you to live for a day like I live, and you will see what it is like". I told her that my life is totally ruled by this illness and that my little girl has been on holiday from school these last two weeks and has not been anywhere because of me feeling so poorly. I think I did get through to her!

Time will tell.

Heather - you poor thing. Now you know why I refused it! Hopefully you will get some answers, though I wouldn't hold my breath!

Take care

Sandie x

Sandie, that's good news that your GP is ready to take action! I hope you (finally) get the answers you need.

Heather, I hadn't been told about bringing someone with me though I wish I had been told that by the doctors or even the hospital where the test was booked.

In any event, I was one of the lucky ones and suffered very little with the caloric test. The technician told me I have a vestibular weakness in my right ear, which accounts for the dizziness. That's a relief, really. To know it's all in my head rather than being "all in my head" *laughs* sorry.

After the "Follow the pretty red light" Test (I'm sure there's a technical name for it, but that's what I call it) the technician asked me if I suffer from migraines. I told her I hadn't thought I did but as she was the second person to ask me recently, I was beginning to think I might. Apparently, I have nystagmus (groovy eyeball shaking) consistent with migraine and she was confident (though couldn't diagnose) that it's only relevant with migraines.

So, apparently, according to two different specialists lately; I have migraines without headache. Didn't think it was possible, but it seems it is, according to the vast and varied interwebs.

I bought Migraines for Dummies and plan to study it deeply. I remain sceptical but have, just today, cut out the final of the Five Cs of Migraine (caffeine) and will see if I get any relief.

I will call my ENT on Monday for an appointment to discuss the results of today's test (and blood test) and will let you all know how I do.

All the best!

*hugs* Tanya

Hi Tanya, In all my reading about migraines on the internet I have seen a book "Heal your Headache" by Eric Bucholz that a lot of people say is very helpful. I have been meaning to try to get hold of it myself as I think migraines have something to do with me as well.

I have been going okay, went away for a little beach holiday over Easter with great friends which I really enjoyed. I am not really dizzy very much any more, but have been having little 'spells' where I have pressure in my head or my whole head tingles, or I feel like I'm having a hot flush... can anyone relate to this? (by the way I have had my hormones tested and they are normal) I have really been functioning quite normally, but these strange things keep happening and bothering me! I guess I have to keep remembering that I have improved so much over the past few months and try not to worry. Hope everyone is having a good day. Cathy

Cathy, I can relate to the head pressure and spells, my dizziness is mostly gone but when I get that head and sinus pressure I have these split second spells that fell like a rush to the head, My balance is still off as well, but its slowly getting better, actually very slowly. Next week I might get my GP to refer me to an ENT for some tests, Cathy do you still get burning and tingling skin, I still get it in random place mostly my arms and legs.

DC

Hi everyone, I see one of my posts didn't make it, but that's ok. I was watching HOUSE yet again this week and they ran that ear test on a patient - pouring cold water into the ear canal. The doctor said it will either have no effect other than being uncomfortable, OR you'll have the dizzy symptoms. The patient promptly responded by vomiting on the doctor. I laughed so hard! Because that is how it is! It can be that sudden!

Fortunately, (I've hit the 5 month marker) I'm really starting to feel better. I've been taking the iron tablets religiously, and sudafed on/off, but really....I'm feeling better! I have way more energy than I've had in awhile and my head does feel clearer. I'm starting to feel more creative again with my sewing also. KNOCK ON WOOD - or my head LOL I've been going to bed at an early hour and I added a blanket to my bedding. I've been able to sleep 6-9 hours each night straight through which is a blessing! The sleep patterns alone help so much with my health. There is light at the end of the tunnel! Hang in there! Laura P

Hey guys! How is everyone feeling? Hopefully some improvement. Things are still getting better each day for me and I am so thankful. I would say that I am about 90-95% on most days and I am looking forward to the day when I am 100% again. I was curious if anyone had flown since having this illness? And if so how did it affect or did it at all? I have a trip planned in about 3 weeks and I am supposed to be flying and I am a little nervous about it. My ENT told me it should be fine as long as I use some Afrin nasal spray before getting on the plane to fight against the pressure. I hope this is accurate. I just don't want to have come this far to only trigger something and be right back to square one. If anyone has any advice I would greatly appreciate it. Thanks and have a good day.

Laura

Hi Laura, I have flown several times since I have had this and haven't had any trouble. I think there are several people who have posted on here that have said the same thing. Hopefully you should be fine too!

Cathy

Update - I went to my GP today and he said I have acute labyrinthitis and sinusitis, he basically said as long as Im making progress thats all that matters and there is no need to see an ENT as Im getting better. He did suggest Zyrtec and or Sudafed to help with the congestion and pressure, he stated there is really no set time for recovery and everybody is different, in regards to the sensations of burning and tingling, he put it down to anxiety and hyperventilating.

I've been using sudafed and I think it helped a lot! Laura P

OK Im at the 4month stage and feeling not too bad, went to the shopping centre looking around under the bright fluorescent lights and felt a little off balance and swimy in my head, this also brought about more pressure in my ears. Anyone else feel this way, man the progress is slow.

DC

Hi everyone

Seems a little quiet on here at the moment, where is everyone! Hopefully you have all recovered and moved on!

DC - yes this is entirely normal with Labs. Supermarkets, anywhere where there is noise, lots of movement and bright lights will make you feel unsteady. Don't forget this virus has damaged your inner ear and and it is therefore sending all these dodgy signals to your brain hence the confusion in there!

Katie - where are you - could do with some more of your stories! Hope you are well!

My ears are feeling a little blocked at the moment. This is what happens every year, the pollen season comes and I suffer allergies and then this brings on the dizziness and balance problems. I don't suffer hugely from allergies but it doesn't take much to set me off!

Take care

Sandie xx

Hi all I think I'm actually having a discharge from my right ear now. It seems to be crusty all of the time. I wonder if I've damaged the ear drum?

Still have the dizzies occasionally, usually when I need to bend over for some reason. That is tolerable. Labs is improving, but afraid I've lost a job anyway. The one part time position I had with he costume designer. Long story and I'm not really sad about it. His stress added to my physical stress. Still have 2 other part time jobs which I love!

Laura P

Hi Sandie...

Doing just fine sweetie. I'm a month into my pastry job at a 5 star hotel and I'm now offically 'Katie queen of cake' I'd better watch it though or my size 10 figure will double pretty quickly :) All I do all day is make ice-cream,cakes and fight with other chefs - quite entertaining really. I'd forgotten just how stroppy we are supposed to be :)

Nothing partically funny has been happening. Boo hoo to that. Although last week a disgruntled dog walker tied a 'poo bag' to my neighbours car. Right on the windscreen wiper. I hope they saw it before they turned them on. That's all I can say :)

So what's your latest? How are the dreaded allergies behaving? Can we not persuade you on to facebook? Rich, El, Tanya and both the lauras are on there:)

Anyway hope you are well honey.

Angela.... What's your news?

Lots of love

Katie XXX

Hi Katie

I am still no further forward, still living with this thing, I still dont understand whats happening to me. Got an appointment tomorrow at hospital to get a Spinal Lumber Puncture done, terrified I am!! The Neurologist started me on new meds last month Actezolomide, I lasted a week, could not feel my face, hands or feet, numb, pins and needles feeling, had shooting nerve pain down both my legs, was completely out of it too. My GP told me to come off them, So back to square one!! Neurologist wants me to try other tablets now. I feel like I am at the end of my tether now. The Neurologist thinks I have cerebellar ataxia!! He Thinks?? So after being diagnosed with Labs for a year and 4 months they now think its this, I dont know what to think, I just hope this Lumber Puncture shows up something so I know what I am dealing with. Feel like I am going mad now. Send me some cake please, I love cake! Let me know what hotel your working in and I will pop in for some cake sometime? I will let you know how I get on tomorrow.

Love Angela

Hi Katie

Lovely to hear from you! Glad you seem to be enjoying your job. My daughter's ex-boyfriend is a chef. What a nutter! Working practically 24/7 so not a lot of time for her. Strange personality that man! She loved him while it lasted but he wouldn't teach her to cook! Don't blame him coz she's a nutter as well!

Size 10, mmm I remember the days - lol! Just have a few kids that'll put paid to that. I remember the first time I met my husband's mother - 25 years ago - I was a size 10 then and cheeky woman was sitting there as big as you like and asked me if I had any old clothes for her! She was serious! She must have been a size 20 then! It was so funny and we've laughed about it for years! Strange how people see themselves isn't it.

I'll be up in Glasgow in October - coming up to see Green Day!!! Can't wait. I haven't been to Glasgow before.

I'm much the same, haven't really improved much. Due for my monthlies and I am feeling really off. About to book a holiday to Paris via Eurostar and not sure how I am going to be with that. I can potter about my daily life quite happily but the thought of going away anywhere scares me. I have had two holidays in Scotland ruined because of this crap over the last few years. The allergies make it so much worse for me and you can't really get away from them. I went shopping in an indoor centre last night and only lasted less than an hour. My balance and my head just went, I just had to get outta there.

Angela, good luck with the lumbar puncture. I really feel for you. What's making them think it's cerebellar ataxia? That sounds pretty serious and I really hope it is not that. What symptoms do you have now.

Have you improved over the last year, are your symptoms constant?

Take care

SANDIE XX

Hi everyone, Good to see lots more posts on here - it's been very quiet lately! Angela - good luck with the lumbar puncture - thinking of you. How is everyone going? Ruth? Tanya? DC?

My progress is that the dizziness/imbalance seems to have improved quite a lot, but I have been having these spells that I think might be panic attacks. It's a feeling that comes over me that something is seriously wrong with my body and that if it gets any worse I will have to call an ambulance. I'm fairly sure there's no dizziness involved. I had one last Friday and ended up calling my husband to come home from work and couldn't get my daughter to school... I have read since that labyrinthitis can be a direct cause of panic disorder and my neurologist said that the brain is getting dodgy signals from the inner ear and sends the body into panic mode so it does seem to fit. I wonder if this could be some residual thing left by the labs or whatever vestibular issue I have? Can anyone relate to this?

Anyway, I my GP is very understanding and supportive so at least I feel that I have someone to go to who will help.

DC - I read about something called Benign Fasciculation syndrome that I wonder is possibly the cause of the tingling/burning that we have been complaining of? It seems to make sense to me. I must say that mine has eased off lately. Just thought I'd mention it to see what you thought.

Hope everyone is having a good day, take care.

Cathy

Cathy - my burning tingling has eased off, very minor detail now. Balance and dizziness is gradually improving and the pressure in my nose and back of head has gradually gone away. The only thing that hasn't completely gone is the pressure in the left side of my cheek,jaw and temple area, my GP said its connected to Labs and my acupuncturist thinks that is the affected side. Who really knows as long as I continue to get better Im happy.

Cathy - panic and axiety is a symptom of Labyrinthitis and I believe all that burning and tingling was due to panic and anxiety caused by inner ear dysfunction, hang in there Cathy, It sounds like we are slowing getting there, there is light at the end of the tunnel.

DC

Hi Cathy

Yes - anxiety and panic attacks go hand in hand with Labyrinthitis. Apparently the nerves that control your anxiety/panic levels are very close to the inner ear.

I suffered anxiety for a few months though never on a massive scale and I have never had a panic attack. I think you might be suffering anxiety. I used to get this weird feeling which would come over the top half of my body. You feel like you want to run somewhere but every time it happened to me I was in my 'safe' place, at home! You feel scared and afraid that something horrible is happening to your body, it truly is awful. Panic attacks are very much worse, people think they are actually having a heart attack when these happen as you can hardly breathe. The main thing for you Cathy during these spells is to concentrate on keeping calm and don't get upset or that will make them worse. Breathe deeply and slowly, this helps a lot. Take longer to exhale as you do to inhale. Mine only lasted for a couple of months and I didn't have that many but they do go away. This was four years ago during my first attack of Labs and it has never come back.

Take care

Sandie x

I don't feel entirely comfortable posting to this site as I've only had VL for about 6 weeks, and so many of you have been dealing with these issues a LOT longer than me. I really feel for all of you and hope the best for everyone. You are all very courageous but not a lot of people can see that as they don't know what it feels like.

My situation: I had the flu in April, it was very mild, my two kids were way worse than me, it is like this every year! Just as I was getting better, it started to get worse again with the added feeling that things were off balance. One morning I got up and couldn't walk more than about 5 meters without feeling like I would pass out. I felt a distinct pull to the left or down at times. This freaked me out and I figured if it got any worse I'd have to go to the ER. We were supposed to go on a flight the next day for a spring vacation and I just could not imagine how I would walk thru the airport, so we cancelled the trip. So that was the worst day. No true vertigo, no bed spins, no vomiting. Pretty lucky I can see from some of these posts. I did have a day of mild vertigo about a week before the flu hit me and now I wonder if that was the true beginning of this infection.

I made an appointment with my GP for about 10 days later. By this time I had figured out from the internet that I most likely had viral labyrinthitis, but I wanted a blood test to make sure nothing really weird was going on. My doctor said "yeah, sounds like an inner ear infection" and wasn't that concerned since I didn't have any ear pain. I also felt at this time that I was well on my way to recovery.

At the peak for two or three days I had very loud tinnitus which made it hard to fall asleep, and that burning/tingling feeling over parts of your body which I believe is your nerve endings being inflammed or a systemic immune response. I had similar sensations about 6 years ago after a bad virus.

It got better over a week. I had a lot of the brain-fog, fatigue, tinnitus and walking like looking at the world thru a hand-held camera. No hearing problem, actually more sensitive to loud noises. Also a constant low grade fever (very low but very much always there), mild sore throat that came and went, and a flare up of what appears to be rosacea on my face. I don't have lupus and it doesn't really look like a lupus rash. It went down onto my neck a bit. Anyway, during all this time I still carried on and did the grocery shopping no problem even though I'd feel a little sick and off balance going round corners, and have to rest a lot when I got home. I am truly lucky as I am not working right now and can take my time and just focus on looking after the kids.

I even jogged a few times (I used to run a lot) and it didn't feel that bad during the run, but afterwards I would feel like I was going to faint. Horrible feeling. So then I thought I would just do a short hike one day. One mile and I got weak, faint and shaky and had to turn around. Too much for my vestibular nerves to handle. This was upsetting. Then last week I had a migraine and wow, it was all bad again. I went to the store and had to leave my cart there as I was so wobbly it set off a panic attack. I went out and rested in my car for 5 minutes then went back in and somehow managed to checkout without incident even though I felt so weak and shaky. Then yesterday I went into my kid's school for a small function, and as I was walking down the corridor I felt the wobblies come on, great! Then I went to the office to sign-in and saw a big puddle of pink vomit from some kid outside the door! That totally sent my panic button off as swine flu is in our school district now, and it had been on my mind all morning. Great. I made it to her classroom and just sat there for 5 minutes unable to socialize with anyone. I went outside for fresh air and it was hard just standing there feeling like passing out the whole time.

Basically I was doing fine before coping with the wobblies, but now I am having panic attacks whenever I don't feel steady. I posted this to try and get feedback on how to handle it. I did have panic attacks 15 years ago and got over them all on my own after a few months so I know this is temporary, but since there is a real physical component to this faint feeling I don't know how to tackle them this time. Any suggestions on how to get thru this? I really need to get out there and do the shopping. My dizziness is so mild compared to some of you and it is annoying that it is affecting my resolve to do normal things. I hope that since my VL seems to be a mild case that I will be one of those lucky ones done with this stuff in 3 months.

In many ways I am so much better than three weeks ago, brain fog and fatigue have lifted, I actually woke up semi-alert this morning and not dreading getting out of bed. And my low grade fever has mostly been gone the past week. But in other ways I feel worse. The wobblies are still there just as much. Is this left over nerve damage or residual inflammation? The tinnitus is still there. And now I have the panic issue which I did not have 3 weeks ago.

Any little suggestions are welcome!

I -knew- my ears were burning!

Hi, all!

I actually had my re-consultation (after the tests) with the Otolaryngologist (I can't pronounce that name for love nor money!).

The results of the caloric tests were as I had expected; I have a vestibular weakness in my right ear. What I had taken from the tests wasn't completely accurate, however... when the technician has said "migraines" I had taken that almost as gospel (Finally! An answer I can do something about!). But, as it turns out, the ENT (OK, I know, but it's shorter and easier to say!) thinks that migraines might not be my issue having looked at my blood tests.

As a reminder, the ENT had sent me for blood work to make sure that there wasn't any immune response reason for my Labs. There isn't. (I'm glad about that as it's one less worry, but disappointed as it's also one step farther from finding answers).

My sed rate is slightly elevated but that only means there is something inflamed/there's some inflammation somewhere. Well, gee. Thanks. That means nothing if we don't know what, where or why.

Also, my cholesterol level was very mildly elevated (but I have just finished a trial low-fibre diet as per my dietician and gastro doc so that was easy to explain and I'm back on low fibre again - thankfully!).

But. The thing that surprised us all was my thyroid and thyroid stimulation results.

According to the results my "Thyroid Stimulating Hormone" is slightly elevated while my "Free Thyroxine" level is slightly low.

The ENT thinks that this could be because my body is telling my pituitary gland that I don't have enough thyroxine so it's over-producing the stimulating hormone.

So, now... Off to a -professor- (no less) Endocrinologist and I'm headed for an MRI of my head (finally! I am really getting to the point that I am worrying about brain damage when I think of the cognitive ability I've lost as well as the inability to speak properly at times) and my ears.

He also recommended that I proceed with physical therapy. The physical therapy that I had dismissed because the therapist told me it was migraines and until I stopped them I wasn't going to see much relief from the therapy. Sigh.

So, that's my "deal".

We run away at the end of next week to bless our union in front of friends and family so all of the stress that I've put myself under dealing with that will be gone-zo! Woot! I can't wait to just sit and enjoy all of the efforts of everyone instead of worrying about all of the efforts!

Sending hugs and healing thoughts to you all!

~T

P.S. I was told that the vestibular weakness in my ear may or may not repair itself. it's a crapshoot.

Hi KC

All of the symptoms you describe are totally typical of Labs. In most cases (not all) Labs does hit after an upper respiratory tract infection or something like the flu as it did with me (and you). I was like you in the early days in the sense that I had no hearing loss, was very sensitive to loud noises etc and had dizziness and balance problems. I have also never vomited but have felt nausea from time to time when I am really dizzy.

You are doing well in that you are not letting it get the better of you. Keep trying to do stuff and you will beat this thing. At the moment your brain will be trying to make sense of the dodgy signals it is getting from your inner ear and this is where the dizziness and feelings of falling over come from. The Labs virus will now have left your body, it is the damage it has left behind that it the problem.

For me, I have had this for 4 years now and have had periods where I have felt ok. I have allergies and have very low iron stores and also probably about to enter menopause sometime soon (I am 48), and this is why (I think )I am having ongoing symptoms.

Don't worry too much you will probably get over this within 6 months or less and feel great again!

Don't be scared of it. I know that's hard to do as when it starts to happen you really do feel like you cannot cope and nobody can really see what is happening to you as you look normal, but in four years I have never fallen over though sometimes I can't walk in a straight line!

Do you have full blown panic attacks or just anxiety? They are both also linked to Labs as the nerves which control your anxiety levels are close to the inner ear.

With me, the dizziness/vertigo came first and the wobblies where I felt like I was falling over all the time came about 6/8 weeks into the illness. This lasted a couple of months and then I was ok for a few months with no symptoms whatsoever. I'm one of the unlucky ones in that sense (that I keep relapsing). But, you know, you still can have a decent quality of life and it's not life threatening. You just have to keep positive and keep trying to do stuff as long as you don't overdo it you'll be OK. And don't beat yourself up if you can't do stuff - that's ok too.

Tanya - yours is the same story I have heard so many times over the last few years. Loads and loads of tests for one thing and another and no definitive results. Like banging your head off a brick wall isn't it?

A friend of mine has thyroid trouble and she put on loads of weight, she went on some type of drug and lost all the weight. But it can cause loads of symptoms as can just about everything else!

AND, why do they even bother to look for this vestibular weakness in the ear if all they are going to say is 'oh, well it may cure itself or it may not'. It's mad!!!

Never mind Tanya,I am sure you will get there one day! What are your symptoms now, are you feeling any better.

I hope your blessing goes well next week. Have you designed another beautiful outfit?

Take care

Sandie xx

Sandie - You crack me up! I love reading your posts. Anyway, I'm in menopause - lovely - Add night (and some day) sweats to all of our LABS' symptoms with an occasional panic attack and that's my story! Sweating through my clothes........... Couldn't get any better.

I'm feeling pretty good really. I've been so much more relaxed since the one part time job ended. However, I've noticed that whenever I'm reaching and looking straight above me, I get the dizzies still. I breathe through it and pause. Customers must think I'm saying a prayer or something. I don't dare say anything about this at the greenhouse job since I may be up and down ladders etc. I don't want them to think I'm incapable. If it does flare up again I'll deal with it.

Things could be much worse. I recently had a "bleacher friend", (we sat together at wrestling matches since our sons were on the same school team) just die from ALS. Very sad, and we were the same age! So - I can live with the LABS!!

Don't mean to be morbid but it's Spring and the flowers are coming out and life really is good!

Happy Mother's Day!

Laura P

Hello, I am not sure if this is what I have or not. I rode the Gravitron at a carnival a few days ago and am still getting a lot of dizzy spells. I constantly feel like I am going to fall over or I am running into walls.

I am calling my dr. on Monday just to be sure. But it does sound like what I may have.

Hi Sandie and DC, Thanks for your support and encouragement. I really appreciate it.

KC -My main issue at the moment is anxiety/panic so I can definitely relate to your post. The way that I am trying to deal with it is just to tell myself that this is normal for this virus/disorder. Every time it happens it passes within a few minutes so I guess the more it happens the more I know it will pass! Hopefully that means that the anxiety will happen less... For what its worth I have heard that magnesium supplements are meant to be good for anxiety/panic.

I can also relate to having this thing and also having kids to look after - I have often had dizzy or anxious spells when I am out with my girls which I find more stressful than if it was just me.

Tanya - as we have discussed before I understand your frustration! Thinking of you as this continues.

My latest is that I went to my vestibular rehabilitation therapist on Friday - she works only with inner ear patients and really does seem to know what she is talking about, unlike many others! and didn't think that I have Menieres either. She said it is very common for people to have labs and take several months to recover. So I feel quite hopeful after seeing her.

Hope everyone has a good week Cathy

Thanks for your comments Sandie and Cathy. I tried to do a quick trip into the grocery store on Friday. I made it as far as the flower department, got unbalanced and headed back out. I'd say I am not having a full blown panic attack, but it did get quite intense last week at the grocery store. I've probably only had a few really intense panic attacks in my lifetime. Usually it starts to build and I can either distract myself or talk myself down. I go for short walks around the neighbourhood and when I start feeling weird and wobbly I just try to accept it as "normal" for now, and not something to worry about.

I've decided not to feel bad asking my DH to help with the shopping. I'll get there someday and I need to not push it right now. I had a really horrible day on Saturday. I was feeling bad in my head on Friday and then it became a pretty intense mirgraine on Saturday. Partly hormones, partly turbulent weather, compounded with the labs, it felt like the worst migraine ever. I was very upset all day thinking I've made no progress at all in 6 weeks, but really it was just a bad day. The next day I was much better and today even better.

I've decided to start a diary noting how I feel each day. I'm going to go back over the last 6 weeks and fill in that stuff too. Then I'll be able to look back occasionally and see some progress. I do feel much better in the evenings, like many of you. Some good patches where I reach about 95% I'd say.

I noticed something unusual yesterday. For years watching fast moving video games with the background rotating used to make me dizzy...this was pre-Labs I'm talking about. Movies with lots of fast-moving action as well. I'd always have to shut my eyes. I was watching my son play a video game yesterday, and it didn't bother me at all! Weird eh? I have read that many of you found watching TV impossible. It doesn't bother me at all now. I figure that my head has decided not to link my visual input with my motion detectors anymore, in an attempt to make me feel less dizzy, or simply because they sometimes do not synch. I also noticed a few weeks ago that my brain was trying to ignore inputs from my left periphery, especially if I was moving in a car. Taking in that visual stuff would make me feel uneasy. And then a week later I almost ran over a woman that had walked out into the road on my left side. I was looking right to see if the traffic was cleared, and when I pulled out to turn left, there she was about two feet away from my car! Appeared out of nowhere. I felt really bad. But what was she thinking crossing the street not at an intersection??

Have a good week everyone.

Well folks, I experienced a full blown panic attack two nights ago. It happened after probably my best day yet since this started. I couldn't fall asleep at all and by 4am got into such a state as I've never experienced before. Felt like my life was over, like I was going crazy. I took some valium that was left over from a dental appointment my son had two years ago and managed to sleep about 1.5 hours later that day. The anxiety was still cursing through my body after I awoke. I went to my GP this morning and filled out the questionnairs for both depression and anxiety. I am normal for depression (I wasn't sure myself) and moderate for anxiety and she is giving me some Xanax to take so that I can avoid another panic attack. She wants me back in a few weeks to make sure I am not taking too much Xanax as it can get addictive she says. I told her that it has been 7 weeks with this inner ear problem and she might send me on for more testing if I don't start improving (which I know will be a waste of time). I told her about feeling like fainting when I overdo something and she seemed surprised. I suppose my fear in stores is that I will faint and crack my head. Isn't that a classic sign of inner ear inflammation??

Well at least I will have the Xanax soon to keep in my purse and hopefully I can start going into stores again and living more normally. I have no problem with the balance issue, it seems pretty minor now, it is this anxiety that is stressing me out. And also not knowing how long I'm going to be feeling this way.

Hugs to everyone that needs them.

KC, I had the feeling like I was going to faint to if I over exerted myself in the first 2-8 weeks, Im into my 5th month now and I am getting there one day at a time, I think 2 more months and I'll feel close to normal (I hope). This has been the biggest test of mental strength I have ever had to face, we will overcome this and be stronger when we do.

DC

Good everyone -

I'm ending my 6th month and all of a sudden I've realized that I'm having fewer and fewer dizzy spells! I'm having more regular days than dizzy days. It's odd though, because the illness has become part of my routine. I almost expect being dizzy.......

So I'm glad that it's fading - hopefully

Laura P

Laura, I feel the same way, dizziness is slowly going and balance seems to be getting better, still have pressure in my face especially right behind my nose. It really is a slow process, I just want to be 100% again.

DC

Hello every1

I Havent been on here in a coupla months but i thought id give an update as to whats happening to me.

I was hit with labs around a year ago. I had recovered to around 95% by December/January time. Febuary 23rd, after driving around for a coupla hours I got up and suddenly felt a profound and comprehensive weakness from my hips down accompanied with tingling and pins and needles in mny legs. I thought it could be a relapse of labs except i wasnt dizzy. Since then I have had weakness in my legs although I have recovered slightly. My neuro thinks its some kind of post viral syndrome and not MS. I had a MRI scan done over 2 weeks ago and havent heard anything back...is this a good or bad...I know many of you have had MRI scans..would they have got back to my quickly had they found say a lesion or something?

Im glad that the dizzyness is over...I still get some lightheaded feelings now and again. But my main concern is the weakness in my legs, I mean i was staggering all over the place when it happened. Even now I can feel it in my hips and thighs and my legs will start shaking if I stand on the spot for more than 10 mins.

I have read on some websites how Labs can be one of the initial manifestations of MS. Anyone know if theres any truth to this?

Im feeling anxious, frustrated and scared. :-(.

Hope you are all well.

TC.

KAM

Not to be too bossy, but try contacting the doctor and nicely demanding the results of the MRI.

Bureaucratic details can be so annoying sometimes.

I had a breast exam scare once with a minor biopsy, which wasn't minor to me. Since it was all clear they didn't feel the urgency to tell me! I showed up unexpectedly at my doctor's office asking for the results. She apologized...... I'm a naturally anxious person anyway, so these little triggers make me nervous.

Interestingly, and I'm not sure if it is related, but once I confirmed that I would not be returning to the costume shop job, which was very stressful, I started feeling better! Stress for me is definitely a trigger for the Labs!

Laura P

Hi evryone...

Kam... I didn't get my MRI results back for a month. That's quite normal if there is nothing wrong. So it sounds like good news :) They check them immediately - even though they don't tell you that! You would've been called in straight away if there was anything obviously wrong. Don't scare the hell out of yourself with talk about MS. Alot of the symptoms are similar to labs and that's where it ends. I am sure if your doctors thought there was even the slightest possibility they would've tested you for it already. So, try and be positive.

Sandie... How the h*ll are you? Long time no chat girl. Been a bit busy lately - Shit excuse I know, have a nutter of a boss to contend with and I always seem to be short of time these days. How are you feeling overall? Has there been much improvement since we last spoke?

Angela.. Well sweetie, sorry it's taken me so long to write. How did the dreaded LP go? I hope it wasn't as bad a you feared? I had all my fingers and toes crossed and I thought about you that day. Have you had your results back from it? I think you've been so brave! I really hope you're doing better :)

Lots of love everyone

Katie XXX

Update -

OK I think Im finally seeing the light at the end of the tunnel, the last few days I have felt better then ever, Im at the 6 month mark now and I feel that Im winning. I still feel a little unsteady from time to time and still get a feeling of internal swaying but on a whole Im better. Still get pressure in my cheek and a tingling feeling right next to my nose but I have a feeling this is linked to my jaw which is constantly clicking, I also clench my teeth when I sleep.

DC

Everyone please feel free to give an update.

Hi Katie

I have been having a bit of a time of it again. Lumber Puncture was horrendous, It brought all my symptoms on 10 times worse, The severe headaches I got after it was unbearable, had to get the Emergency Doctor out, the back pain was just as bad, Was bedridden for 2 weeks, could not walk or talk again I was completly out of it. Doctor called the Neurologist from my house it has been pretty scary. Not had results back yet from it but they are convinced its the brain and that when they took Spinal Fluid out it has upset the brain bringing on my symptoms all that worse. The headaches were so severe I really thought my head was going to burst. Cried for 2 weeks non stop, it really has been hell! It has just been this week that I have really started to get over the worst. Back on my feet about the house again, Can get to the loo on my own without being carried. At least the weather has been good I have been sitting in my garden it definetly has made a difference, I am starting to think a wee bit more positive again after being so low. The worst mentally I have been I think through this whole 16 month nightmare!! They say this Cerebellar Ataxia probably started off with Labs, It can stem from a Virus!

Not had it 100% confirmed yet but the doctor and Neuro think its this Ataxia.

My symptoms have changed a bit, I cant read or watch television as my vision goes blurry and I feel the wierdness starting to happen, the heavy feeling around my eyes, the pains in my head and sensitivity around it, my eyes droop a bit and my speech slows right down. It feels like my eyeballs dont fit in their sockets, Wierd its really hard to explain to someone whats happening to me inside and very frustrating.

Dont really have a life at the moment, cant go out, cant read, cant watch tele, can only type on the computer a few words at a time then have to look away from the screen.

Thanks for thinking about me, I hope your still enjoying your new job. Have made a list of all the things I want to do when I am feeling a bit better. Your on my list to meet you and eat cake!

To everyone else on this site sending my love.

Take Care guys Angela x

And am still suffering from the swaying motion like a rocking horse!!

x

Hi Katie, glad to see you are still the same old Katie!!

Yes, I am still kicking about, not fully recovered but I am improving, at last! Nice to see you love your job - lol! I don't know - put someone in power and they turn into nutters, sounds a nice person your boss.

Hey, what do you think of this fantastic weather we have had lately (even in Scotland). It's great isn't it. I've been doing a lot of gardening, planting up my pots and stuff like that. And, my kids have been home from Uni. My daughter, who studies in Edinburgh, is off to New York until September doing this Camp America thing. My son, who studies at Oxford, is home at the moment but he is off on his travels to the South of France for a week and then on to Hong Kong for a month with his girlfriend. Lucky kids huh! Are you having a holiday this year Katie?

Angela, I feel for you so much. That Lumbar puncture sounds so painful. I really hope it is not this Ataxia thing you are talking about and that it is just Labs lingering on like it has for me. Try to be positive Angela, can I just ask if you have always constantly felt the imbalance or does it improve at times?

When I first got Labs, for months I could not watch TV, use the telephone, read a newspaper or magazine or even talk to people because it would bring the symptoms on so much worse. It was a very lonely 6 months I had and I also suffered slight anxiety (probably due to the fact that I thought I was dying). Using the loo was a nightmare for me as I would feel like I was falling off the toilet. The shower was HORRIFIC, because I could not keep my balance. I was living in a world where I could just not do anything and it is a viscious circle because you are worrying so much about what is actually wrong with you. The swaying motion you are feeling is also what I feel. I relapse every few months and it takes me months to feel steady again. This is a very scary feeling and is probably the worst for me. I can cope with the dizziness if it is not too bad i.e. I am not feeling the nausea etc with it but the balance - still scares the cr** out of me at times. Often it just hits me like a hammer and I just can't stand up.

Don't forget Angela - I have suffered from all this poop for over 4 years now and I accept the fact now that I am not actually going to die from it. I hope to god that you recover fully soon because I would not wish this on my worst enemy and would rather suffer physical pain than this, but try and be positive - chances are the Docs will not find anything from your lumbar puncture (fingers crossed), because let's be honest they know absolutely NOWT about Labs etc not even at the ENT!!

DC - just to say that I am glad you are feeling a lot better. Do you have trouble with your sinuses? I think this can make this thing worse and I am thinking now that this may be why I am still having symptoms so long after the initial Labs attack. I suffer from post nasal drip so I think this could be affecting my ears.

Anyway, take care everyone.

Sandie x

Hey Sandie

I dont always have the imbalance but sometimes it lasts for weeks then I have the odd day where it comes and goes.

Thanks for your support. Hugs to you.

Angela x

Sandie, Ive had alot of sinus issues since I got the labs, my doctor's diagnosis was Sinusitis and Labyrinthitis. Ive been doing acupuncture for about 3 months now and it has really helped with my balance and with my sinuses. My acupuncturists is a very smart man who knows alot about alternative healing and he really does put my mind at ease by telling me the power to heal is within all of us, we just have to activate it. He tells me to meditate twice daily, I have been a bit lazy lately but did notice when I was meditating daily that I felt really good mentally and physically, we really have to open our minds up to alternative healing especially when the doctors offer us no real help in terms of recovery. I have to constantly remind myself to stay positive, it really does make a difference, also say some positive affirmations everyday.

DC

Hi Angela

This is exactly the same as me, I get serious relapses with my balance and it takes me weeks/months to feel steady again and then every now and again in my 'better' periods, it will hit for a few hours at a time. Strange isn't it?

DC - yes, I do believe that positive thinking does help a lot with this illness. I think the more you think about it the more it manifests itself and you get really scared of it. But if you try and keep your mind occupied with other things and concentrate on the good things in life you will attain a good quality of life.

Take care everyone

Sandie x

Hi Angela

Well done doll. You made it through to the other side of the dreaded LP! Bravo :)God it sounds blo*dy awful. You've been through some time of it.

When you had your MRI scan done... I would have thought they would've found the ataxia. It's one the things they look for. If it is Cerebellar Ataxia you'll have to find out which type it is. Some are better to manage than others and I remember reading that Vitaimin E can be a factor in one sort and eating a gluten free diet can help with a another type. So I think it just depends. Isn't it crazy that a viral infection can cause so much trouble?

It is possible it is just labyrinthitis refusing to go away. It can go on for much longer than doctors will ever accept. We all know that or we wouldn't have ended up here :)

As for cake. You're on. Shall be there with bells on!

Hi Sandie.... Nice to hear from ya :) Still fighting this damm thing, but improving. Glad to hear it girl :)

As for my job. I could leave tomorrow without a second thought. My nutter of a boss has now shaved his head and looks likes GI Jane. I'm struggling even more to take him seriously.

I'm off to T in the park next month. we're going a day early this year so it means no shower for 5 days. Ermmm... Lovely. As for holidays and life in general have been thinking about jumping ship and moving to Bath or even going back to Uni. But yesterday my best mate through a spanner in the works... His flat is due to go up for sale soon and even in the current housing market stands to make a bit of money. He's asked me to scarper off round the world with him. He's looking for a beach bar in Thailand or the Caribbean and has offered me 30% of the profits for no risk. It's a pretty good offer! Lol :)

In the mean time I would quite like to go and do something peaceful for the Summer, like pick some fruit! ..... Who am I kidding that wouldn't be peaceful. I would just get prickles in my hands and fight with Polish people all day. Oh, who knows :)

What about you Sandie. You can't have the kids jet-setting all over the world and you're sat at home. Get down that travel agents! X

Lots of love to you both

Katie XXX

Im feeling better everyday, just getting one annoying symptom, at night I feel my calf muscles twitching/pulsating, it seems to be mainly in my left leg but also in the right from time to time. My thinking is that its just from my legs working harder then normal to compensate for my balance. Anyone else experiencing this???

DC

Angela - I really feel for you. I had an LP done 6 years ago and the damn hole they made just kept on leaking spinal fluid. I could have died from it. The procedure was done after an MRI that the doctor was sure showed no MS symptoms, so why he wanted to go ahead with an LP was beyond me. Anyway, I was completely bedridden for one week (sorry not as bad as your two weeks!) with horrible horrible migraine pain that I had to take vicodin for. Two trips to the ER during this time for a blood patch to stop the leak, since the first blood patch didn't work. After that I had a migraine for about another two weeks but at least I could get up and move about. So so sorry it made all your symptoms worse.

My update - I was taking the Xanax just a few times to deal with panic attacks but things just got worse and worse. I be fine during the day but awake in the middle of the night in a HUGE panic state, it felt like someone had hooked me up to a 12V battery during the night. I had no anxious thoughts going on at the time so I didn't understand it. I was sweating, rapid heart rate, huge, I mean huge body flush/ body burning up like I had a 105F fever, shakes, internal buzzing, tingling, you name it, ALL the physical symptoms of extreme anxiety. I could not get back to sleep because it was so uncomfortable. This all started after probably my best day ever with the labs - I was at 8.5 weeks and had one day where I did not notice any balance problems. So this chronic anxiety then stuck with me all day, I could only sleep about 1 or 2 hours a night, and after 2 or 3 days of this I became quite despondant because the Xanax did not seem to help at all and so I went to my GP.

She prescribed Lexapro, a SSRI. It immediately helped but I felt very weird on it....like it was working too well but at the same time making me really groggy. The second day on it I was almost vomiting. I stopped taking it since it was obviously toxic to me. But then the next day my anxiety shot thru the roof again, I got desperate and took just a very small dose of the Lexapro, thinking I was just very sensitive to the dose. Well what happened next is something very scary...I went into wild convulsions, psychosis and collapsed. My DH drove me to the ER and I ended up in a psych hospital for a week. Which was a very interesting experience in more ways than one. They put me on Ativan? and that immediately took away all my anxiety symptoms and body flushing. One night they gave me something specific for bi-polar (which I had not ever been diagnosed with, but it is possible as it runs in my family) and I had the same horrible body-burning/flush reaction to it. We next tried just Klonopin with some Ambien to get to sleep and I improved greatly each and every day. If only I could have had that at the beginning....none of this would have happened.

I feel pretty good now. Balance is still off but with the Klonopin (only taking 1 mg a day now) it doesn't upset me. I am seeing a therapist now too to help me with the panic attacks and anxiety. I do believe if I can get the right thought patterns going, I can help reverse the unbalance I have developed in my panic center in my brain.

I am going to chill this summer, not look for work until the fall and hopefully get anxiety free. I really felt at 8 weeks that I was only 4 to 8 weeks from being labs-free. Then this crap came upon me. But I know my mild labs symptoms are nothing compared to dealing with the extreme physically painful anxiety and depression I entered two weeks ago - which was precipitated by the labs. Kind of a vicious circle and I hope to break it. Interestly how many doctors didn't realize there is this connection between labs and anxiety. I printed off the wikipedia pages on labyrinthitis and highlighted the paragraphs on the anxiety connection to give to them. With the convulsions I was having I have to follow up with a neurologist, probably another MRI and EEG.

DC- glad to hear you are still improving. I get those muscle twitches too. But not really while on the sedative. I had those 6 years ago when I had some kind of mild encephalitis and they went away after about a month.

All in all I'm in a good place now and hope to wean off the klonopin once the labs goes away and my anxiety from the labs is under control.

Hi Everyone.

I'm just wondering if anyone has any advice for me. I'm waiting to see yet another doctor, but I feel like I'm losing confidence in them.

I've had labyrinthitis for almost a year now and am sick of it. My head isn't generally that dizzy really unless I move it about quickly, but I constantly feel slightly sick and feel like my head is getting squashed at the sides. However, I do get a bit wonky when in supermarkets, busy places etc. Sometimes things look like they're moving when I know they're not.

I've tried the exercises that seem to be popular (Cawthornes etc), but they don't really make me feel dizzy, so I don't know if they're actually worth doing. Some of the exercises say to do them on cushions, but I'm ok with that. However, if I'm not expecting a surface to be soft, that throws me and makes me feel ill.

Does anyone have any advice on what I should do? Should I keep doing them? Should I do things (like spin) to make me very dizzy in the hope that my head gets used to it? I really don't know what to do, but need to do something.

Thanks for any help.

Mark.

Mark, Get some Gingko, its really good for inner ear problems, I have also had a lot of success with acupuncture and massage. I found that forcing myself to exercise has really helped me, in the beginning I felt like I was on a boat swaying around, but with every workout I got a little bit better, Im now coming into my 7th month and I feel like Im getting there.

DC

Thanks for the info DC. I will go and get some today. I was having a look on Wikipedia for info on Ginkgo, and it says one of the side effects may be dizziness! Knowing my luck......

I've tried accupuncture, but that didn't really do anything for me. I will perservere with the exercises though.

Again, any further help is appreciated.

Thanks again.

Mark.

HI everyone - I haven't been on in awhile. Had the MRI, everything came back normal - seems to be the story on every test, which in some ways if frustrating.

DC, I'm about on the same timeframe as you (7 months) and I'm feeling better and can function, and I am also experiencing the muscle twitching. I have no idea what that is all about??

Mark, I can relate to you - my head feels like it's being squeezed also. I am not necessarily having the dizzy spells - just that contraction head feeling and I am still experiencing the pain on the side of my nose/cheek.

Hang in there - I think we are all making progress - unfortunately with this Labs, one symptom goes away another pops up!

Hi Mark, From what I understand the VRT exercises have to be tailored to an individual - it depends on what part of your inner ear has been damaged. Do you have a vestibular rehabilitation physio near you? I also found that the physio that I went to only dealt with inner ear patients and so was very knowledgeable compared to any other doctor I saw. Good luck! DC and Heather - I came across a website a while ago on Benign Fasciculation Syndrome which from my understanding is twitching, tingling, etc etc which can be caused by a virus. I haven't been diagnosed with this but reading about this has really helped my anxiety about these strange symptoms. Look it up and see what you think. I have been continuing to improve - have been doing some casual work and I think that being busier has really helped - I was spending way too much time in my own anxious company! I think it is about 8 months for me now and am feeling very close to normal. Tanya, KC - how are you going? Take care everyone Cathy

Hi Everyone, I wrote a long post a couple days ago detailing my latest experiences. I don't know if it just takes that long to get approved by Richard before posting or if I somehow didn't get it submitted correctly. Either way, I am doing fine now but have to, absolutely need to at the moment take anti-anxiety meds. It is a long story and maybe one I'd like to skip over. I am at 11.5 weeks and doing well, apart from the anxiety that flared up a few weeks ago, and got quite bad at one point. My balance is pretty good, my head feels mostly normal, and I am going to start light exercise again in a few days.

I just wanted to give extra hugs to Angela who went through that horrible lumbar puncture. I had one myself 6 years ago and was completed incapacitated by the procedure for a week with two more trips to the ER to fix the leaking spinal fluid. Angela honey, if you can survive two weeks of that, you are very very strong and I hope you get better and stronger each day.

Hi KC

Thank you for the hugs :-)I still have had no results back yet from the Lumber Puncture. I don't feel strong I feel like this thing is winning right now. I am exhausted its like a constant fight I am having with myself to try and be normal. Still not well enough to go anywhere. Stuck in the house, losing my sanity!! Tomorrows another day, Praying I wake with this thing gone!!

Love Angela

Hi

KC - me too - I've had a few of my posts go missing and they do take a while to type. Glad to hear that you are feeling better! The anxiety is just normal and that should soon pass too. Angela, have you had any results back yet?

Just a short post - see if it gets through.

Hope everyone is ok.

Sandie x

Hi Has anyone had vision problems "feels like vision is shaking and hard to focus its driving ne crazy" have a huge farm to run and getting more mad a this thing then worried

Jeff - My vision was really jumpy in the beginning but that got better with time.

Every week I feel I make a small step towards a full recovery, I function nearly normal at the moment but still feel a slight rocking and swaying. I just keep working out doing things that should make me feel off balance or dizzy, physical exercise seems to really make a difference in recovery.

Thanks my throat is swelled a bit the doctors say it is a viral infection I have had a ct scan which came back ok still have to get a MRI have been tested for everything Mono, lyme,Blood test perfect etc... Everything comes back OK If it wasent for my vision and a little dizzy with quick head movements I would feel good I guess I will have to wait it out. Its nice to talk to people who have had this or have this because some people just say "tough it out" but its really hard. It really affects your head its hard to think and concentrate some times. Thanks for the advice.

I've had this labs for about 7 months now, still feel a little unsteady on my feet but I am able to do most things, still get pressure behind my nose, but I have come a long way. How is everyone else going????

I'm at 3 months now. My main problem is anxiety but I'm working on that. I am down to 0.5 to 0.75 mg of Klonopin per day, so I am not as clumsy as before and can go out and do things again without having a panic attack. I have a nurse-practitioner trying different anti-anxiety meds on me that won't affect my already compromised balance. Too soon to say if they are working.

Jeff, this IS really hard, pat yourself on the back for getting on with life as best you can. No one can really see from the outside what is wrong so I feel like I don't receive much sympathy when I appear to be functioning normally most of the time.

Jeff - Sometimes my vision does that but rarily. My main problem is feeling off-balance when walking. I don't get any problems really with turning my head quickly. My tinnitus has gone down, in fact I hardly ever notice it now and I am hoping that is progress and not just an effect of the Klonopin. I do get occasional ear pain, mild, that I never had at the beginning, strange.

DC- when you say you can work out, does that include running or just lifting etc? I would really like to get back to running but the Klonopin for now makes me a bit clumsy...although at my current dose I could probably do it. I was up to running almost 4 miles every other day, broken up with walk breaks before I got hit with the anxiety thing (I found running to be not much more disconcerting than walking, so why not?). I hope to get back out there soon.

KC - I do a lot of calisthenics like pushups, pullups, squats etc etc, I also do a lot of Jump Rope training which initially made me very off balance, but now I feel much better after a session. Initially I had ear pain and pressure, now I get more of a burning feeling in my ear. It took me at least 2 months before I was able to work out again after I initially came down with this.

That is the hardest part its not like i am lying in a bed not being able to move. And people think if you seem normal you are ok. I would rather have a broken leg then this. My GP was very thorough he has tested me for strep throat,lyme disease, carbon monoxide poisoning, 5 CBC tests in 4 weeks,a CT scan, tested for MONO twice and have had my throid tested. And all tests come back perfect. I feel like a pin cushion. My anxiety is pretty bad as I am a guy who gets stressed until there is concrete test done that says it is that for 100%. But I mean my GP just didnt send me away like he didnt believe me. So there is some comfort in that. It is just very hard not to think about it all the time as it affects everthing you do all day.

Its been 7 months for me and so far I see slight improvement but I still don't feel right. I know when I'm going to have a bad day when my vision gets blurred and then I begin to feel like I'm on a boat. After numerous Dr. visits including a trip to the ER and $3,000 later I still have no answers. I have an appointment next week for the dreaded Electronystagmography. Sounds scary. Any advice on this test? What can I expect? I appreciate reading everyone's posts. It makes me feel somewhat sane knowing that I'm not alone.

Jeff - just thought I'd mention I had a sore throat for the first 5 weeks, along with a low low grade fever. Neither has really come back since then. How far along are you?? One of the most frustrating things is not knowing how long till full recovery, for some it is 2 to 3 months, for others, much longer but you do improve gradually, with lots of ups and downs thrown in just to make it more challenging.

Does anyone get pressure at the base of the skull and behind the nose, when I last asked the doctor about he said its because thats where the inner ear is behind the nose and on the opposite side its at the base of the skull. I feel the pressure more when I tilt forward and backwards, other then that I feel my balance is getting better very gradually, I still feel a slight rocking which is annoying. My acupuncturists is telling me to stay positive and that I will recover to 100%, he told me worrying will just lead to more health problems.

I have been feeling rough for 5 weeks . I go to a specialist in 2 days. Hopefully it turns out ok. The hardest part is is waiting to get a 100% diagnosis so I at least wont worry it isnt anything else.

Hi everyone: I used to post frequently on this site, but have been really busy. It's nice to know that this site is still up and running.

I just want to tell all my fellow sufferers, that IT DOES GET BETTER, it just takes time. I was dizzy for 14 months, on and off, but have been much better this spring. Longer periods between episodes, although they still occur and taper off after a couple of days. The other thing I want to say is don't expect a linear recovery; don't forget the inner ear or the nerve is damaged so there will be setbacks now and then. But they won't last as long, and won't be as severe. Mine always acts up when the weather turns humid, or when I get overtired. Apparently the exercise ball is supposed to help with this. Anyone tried it? Katie and Sandie, I miss you guys. Cheers Maria

Hi, everyone, Cathy!

It's been an age since I last was here, there's been so much going on since just before the wedding that I am just now taking the time to breathe.

Just before we left for the wedding I had an MRI which was normal in all ways apart from some mild drop in T2 signal but the ENT thought it was artefactual and just coincidental that it was the same side that I have the caloric weakness in.

I was surprised that the brain part of the scan was "normal" as that's what's been annoying me the most lately.

While I was being tested by the ENT I was also diagnosed with "Hypothyroidism" and have started treatment for that.

It has helped my skin a little (it's now a little less dry) and I have started losing weight without trying so that's good news, but I don't feel that it's helped with all of the symptoms it was "supposed" to. According to the Endocrinologist and what I could find on the internets; Hypothyroidism can lead to dizziness and a host of other complaints like 'a disconnected feeling' (which I have).

I get re-tested for that next week to see if I am on the right amount of replacement hormone (and I wouldn't be surprised if I'm not).

The ENT has finally admitted that I "might" be having migraines without headaches (didn't know it was possible, but it appears that not only is it possible, but that it's pretty common, too!). I cut out MSG, chocolate, caffeine, soy and was already not having cheese or citrus... My symptoms of the "freewheeling" feeling have certainly lessened (which makes me think there really -is- something to this migraine-without-headache thing).

However.

Yes, there is a BIG "however" when it comes to my symptoms...

I am now tired ALL the time. I'm talking -sleeping- tired, not just the "lay lazily on the sofa all day" kind of tired. I wake up at 9 or 10 every morning (thanks to an alarm clock), stay awake until 11 or noon, depending on what time I got up at and how well I slept... then have to take a nap. That usually lasts me until about 3:30/4pm ish and I go to bed at 11:30ish and do it all again!

Nightmare.

Along with this overwhelming tiredness, I have a horrid feeling of being disconnected to the world. I often have to remind myself of what it was that I was wanting/trying to do because I've suddenly started to stare blankly into space for no reason.

The other day I was at the dentist getting my silver fillings replaced as I've heard that the mercury in them can cause a whole host of problems and sensitivities (let's hope it helps!) but while I was laying there with a mouth full of hands, drills and suction devices I was confused as to how I would get home when it was all over.

Not "which way will I walk home..." but more I -forgot- the concept of walking. At the time it didn't bother me because I was so disconnected and I remembered by the time I went to actually leave, but when I got home and was praising myself for not being anxious about being at the dentist I remembered how I had actually felt and was quite worried!

I've started to lose cognitive function... I have a difficult time finding the words (when speaking) to convey my thoughts. I was looking at some chocolate brownies last week and said "Bacon"! ( I can sort of see how I managed that one, they are baked, after all!).

I've also had to sometimes start reading things 3 or 4 times before they make sense as I seem to have some form of dyslexia but instead of inverting or transposing letters, I move the whole word (though it remains the correct way around) If that makes sense.. Basically, I can see a sign that says "If I stop can you?" I see it initially as "I stop if you can" or something similar.

Anyway, as I said; I get retested for the thyroid next week and have some VRT to get through and everyone thinks I should be right as rain in a month or so.... I'm not convinced as I'm now coming up on a year of being unemployed/unemployable and am becoming quite cynical about the whole thing. I think my next step will be getting a new GP. He's the one who decided that I could wait from August '08 to January '09 before seeing anyone about by telling me that I just had to "get used to it" and "wait for it to pass".

*hugs to all!* Tanya

Hi Tanya, and everyone, Great to hear from you - I was wondering where you had got to! I'm really sorry to hear that things aren't going so great. Not really sure what to say except that I'm thinking of you. I have been going pretty well. I am hardly ever dizzy any more and only rarely feel off balance. The problem still seems to be anxiety - I think that having had labs or whatever I have lost confidence in my body so any small thing that doesn't feel quite right makes me worry. I still don't feel too good in restaurants, shopping centres, airports etc - places with crowds - but I think it's more of a matter of getting used to it and hopefully it will eventually pass.

Hi to everyone else. Hope you are all going okay. Take care!

Cathy

I feel I'm getting closer everyday to a full recovery, but I still feel that internal swaying and head pressure. But overall I'm functioning alot better, I've got a month leave from work so I'm just relaxing and recorvering, this thing just takes time...

Dc

Hi Sandie, Maria and Katie

Well what can I say its been 18 months now and still no further forward to what the hell is wrong with me? Got the results of Lumber Puncture, They said they didnt record the pressure? Why I want to know? The CSF protein and Glucose were normal with only 2 white cells? Loads of medical jargon in letter the only bit I really understood was that it said none of these investigations have taken us any further with this lady's diagnosis. So they told me first it was Labs, then Cerebellar Ataxia and now they don't know. I am scheduled to see the Neurologist again in the next 2 weeks. Feel deflated and so depressed now, glad I dont have Cerebellar Ataxia but not knowing whats wrong with me is sending me off my head. It's my heads its the worst now the sensitivity is unbearable at times. I still cant watch tele or try to read a book, if I watch tele for more than 5 mins my vision goes blurred, I cant focus, then the stabbing pains from the top of my head start right down to the base of my skull my forehead goes tight and sore and I feel the wierdness come on me and my eyes droop and are all glazed and I start rubbing my head at the top of my skull to the point my hair is standing on end with static and I look like a Women Possessed! Everything slows down my speech, my movements everything. I dont understand it, I could watch television 6 months ago, my symptoms have definetly changed, my ears are not really a problem now, its all my head and eyes and functioning. I cant even wear sunglasses on my head as the legs put pressure on the side of my head and its unbearable as if my heads in a vice!I cant drive my car, I cant go out on my own. I feel like I am just existing right now sitting in my conservatory 24/7 staring out the window. I can do a bit of housework now. I fell over last week just came crashing down and smashed my hip off the chair, I have given myself a right sore one. My partner is struggling to cope with me now, he said he does not get it? How they cannot detect anything. This whole thing is taking its toll, I dont know who I am now, I forget who I was, I am now this little angry person thats ill everyday and struggles to function. I feel like I am starting to become depressed and this is not me. I never ever felt I would be a person that would get depressed but this is bringing me down and I am so sad.

I have the odd day where at times I feel semi-normal but within half an hour I can be ill again. Everyone can see it, they see my face and eyes change and they know its happening to me. I know as soon as I open my eyes in the morning what kind of day am going to have. I still feel the internal swaying and my head pressure is really bad.

As for my employers still giving me grief, getting paid SSP pennies a week, they sent me a P45 in the post without any warning and I was very upset as you can imagine, they said the computer sent it as a error as I am not sacked. I am so stressed but cant be bothered with a fight with them, everyone thinks I should seek legal advice but I have not got the strength! Will keep you posted but think its going to get complicated and more stressful!!

sorry for the rant guys but its took me all my time to do this on the computer and I need to let it out as no one understands except you guys.

Angela

The above post was to KC too!

Angela

Hi Guys

In my last post I said my ears where not bothering me as now, Well today they are killing me, I do not get it!

KC I hope you are well

Angela

So, for those who have added me on FB: we may have another, non Labs, contender for what's been making me sick.

Where's Dr Gregory House when you need him?!?! ;)

*hugs to all* Tanya

Sorry.

I meant to say: The pictures are up on FB.

Can anyone say "Brain Fog"?

Hi Everyone, Tanya, so what is the non-Labs contender? Sorry to hear you are having such annoying cognitive symptoms.

Angela - somehow I am not surprised they found nothing in the lumbar puncture. Although I have never had the type of symptoms you describe I have 100% sympathy for what you are going through. You have every right to feel depressed but try not to let it spoil the good moments. Fight back with your fighting spirit. Be kind to yourself. I hope the neurologist can help you find a diagnosis. Has he ever considered anti-seizure medication? Sounds like it might help in your case. I am not in the health care profession, just a thought I had as I am taking a sedative/anti-convulsant right now and have not had a single headache since I started it over a month ago.

Cathy - I feel I am on the same path as you. It is mostly anxiety with me now. I am in therapy for it - my therapist says I am still extremely anxious, originally I was worrying about the labs, but now I worry much more about the anxiety and how it has ruined the last 6 weeks of my life, which only makes me more anxious. I have been reading up on cognitive behaviour therapy and trying some of those techniques but the anxiety is still a huge part of my messed up brain chemistry right now. I spent a lot of time in her office today all teary-eyed because I tried to taper down the Klonopin and ended up extremely nauseous for two days (withdrawal symptoms). So I am stuck on this stuff for awhile and have to wean much more slowly after first crossing over to diazepam (longer half-life in your body). I hate taking any drugs at all, so this was a hard blow to me, and I have finally admitted to myself that I need to start taking something to stabilize my moods, which are not that extreme but I can't deny it anymore that I am perfectly fine either.

On sunny high pressure days, I feel almost zero balance issues, which is a joy, but on other days it is still definitely there, but I also think I am just getting used to it and so don't notice it as much as I did previously. One thing I read about CBT is to not fear the weird sensations. I was trying to tell the therapist at the beginning of labs you feel weird all the time, it is hard not to be aware of it, and be anxious about it, since you never know how you will feel when you go out until you actually do go out. Or how you will feel day to day, morning to morning. I don't think these people can truly "get it". She thinks I am over-reacting to every little tingle or tummy ache I get.

Well enough about that. I am not supposed to be worrying about it so, there, over and out!

To KC (and others):

You can see pictures here...

http://www.facebook.com/album.php?aid=283111&id=820225110&l=0c36f9d77b

There's a nasty-looking mould that's been growing in our bathroom since before we moved in.

(We asked to have the leak fixed a year ago and they are just now doing it. The local government owns the outsides of our flat as well as any pipes that run -through- it that service the public areas. Don't ask. Weird British set-up)

Hello everyone!

Things are improving but lately as the weather has become stormy again, I've noticed a return of my dizzies. Fortunately I'm mostly affected only when I tilt my head to look upward, or to reach for something on a high shelf. I'm fairly certain I'm through the tunnel with the menopause and I'm starting to believe that many of these symptoms are related to this change in my body chemistry. One new symptom I've had recently (which I'm thinking is NOT related to Labs?) is waking up gasping for air. It's happened 3-4 times now, this severe sleep apnea. The last episode was the scariest as I was facedown on my pillow and really woke up with a major adrenaline rush. I gasped so hard for air that my throat was sore for 2 days. I hope to not have THAT happen again! oh - getting older..... Take care all Laura P

I would definitely check out the MOLD situation!!! When I was teaching and we moved to another building, the building was old, but they had remodeled inside with new paint and carpeting - I was SO SICK EVERY MINUTE I WAS INSIDE THE BUILDING! Nausea, dizziness, faintness, vomiting - oh it was horrible. I thought I would have to quit teaching. It took 3 months for me to acclimate to the building, and then I stayed off the carpeting and avoided older areas of the building. It was a nightmare. I wonde if this is the basis for your illness??

Dear all,

I am so scared.I was diagnosed with lab in april 2006 and since then i have been having days when i feel spaced out in my head.I cant really describe it except its lightheaded foggy and asif i am not in same room as people.I get forgetful and tearful and i am very stressed.When i feel it coming on my ears block and the top of my nose blocks.Steaming helps relieve my symptoms.But i cant believe it can go on for so long although reading your posts one lady has had it for years.I am very scares that i have ms or a tumour and as i work iin the hospital i am to scared to go for mri or ct incase i have.I went to dr loads when first diagnosed and each time bloods were fine and lab was the outcome.I had full blood count last months and that was normal.I still get foggy like i am today and worry myself sick i never suffer from headaches or nausea which i know is good news but my head feels tight when it comes on.I hate the lightheadedness and tearfullness.Cna someone please tell me they have had this for so long too. Sarah

i forgot to say on my last posting above i had an mri in 2006 when i was first diagnosed i didnt work in hospital then so was oblivious to what is could be..it was clear and ent put it down to allergic rhinitus too.

Hi everyone,

Maria - I am still floating about! Nice that you are missing me!

Tanya - poor you. I am so sorry that you are having all these problems and hope that you get sorted soon.

Angela - I am soooo glad it is not this cerebellar ataxia thing with you. That sounds like an awful thing to have. Try not to worry so much about your symptoms. I had a lot of your symptoms (not the standing hair though - lol). And, I can guarantee that from the day I started feeling dizzy my symptoms would change every few weeks. There are so many of them with Labs! One of my weirdest was that I could not bear to wear a watch on my arm as I felt it was cutting my circulation off. I didn't wear one for months, even when I was back at work and feeling much better! Strange!

Try and be positive - it is a waiting game and you will get better. Small steps - I know it is so frustrating and you say your partner doesn't get it but it is hard for other people to get it because you probably look ok. Get him to take a look on these sites with you and see that there are actually loads of other people with the same problems. To your friends and family - they know you are suffering (my little girl always knew when I was at my worst just by reading my face even though I didn't say anything to her). But, to others they cannot tell, which is frustrating in itself.

Laura - ooh I can't wait to get this menopause over and done with. I still have my periods though a couple have been delayed by a month or so but I am so off balance and dizzy at period time it is so awful. So if I could get rid of that part of my life I do believe I would be much recovered.

Take care every one - be positive

Sandie

Hi Sarah

I have had this junk for four years gone March. I know of people who have had it for longer than me. My friend has had it for about 7 years now and I have another personal friend who has had it just under four years.

Your symptoms sound typical of someone with Labs who has ongoing problems.

I also suffer from sinus trouble which makes my dizziness/balance worse. Hayfever season is terrible for me and I am sure that if I did not have this allergenic rhinitis I would have recovered a long time ago. When my symptoms are at their worst I also feel that my ears are blocked especially the right one, though when my GP looks in there they see no blockage. My allergies are all year round and though they are not serious allergies they do affect my ears and therefore cause dizziness and balance problems for me.

I was also offered an MRI about 6 months back by the ENT but was too scared to have that, I was then offered a CT scan but cancelled my appointment. You always wonder if there is something there but when it comes to the crunch you don't really want to know - lol. But really I figured that after four years and with good periods where I have virtually no symptoms the chances of there being something sinister in my head were pretty low! This is going to be the case with you too so try to stop worrying so much. Anxiety and stress feed this thing and make your symptoms worse.

I also do not really suffer from headaches or nausea. I have had slight nausea but have never been sick with it.

When I first started researching Labs etc they were saying (on the internet) that people who had ongoing problems would usually recover after 2 years but I have surpassed this mark and then when I was looking a few months back it was mentioned that you could now recover after 5 years. So only a year to go (now wouldn't that be nice!!!).

Best thing Sarah is to try and stay calm. Take each day as it comes - be kind to yourself.

Take Care.

Sandie xx

Hi Sandie:

I also had read that people usually recover after 2 years. But you are right, if you have good periods in-between, it can't be anything more than that. I had a really good 6 months and bam, Wednesday started feeling nauseous and dizzy. Here we go again. I wonder if I have allergies too, although I never used to. Had nausea but never got sick either. Just dizzy and sick like I have a virus. It might make you feel better to have a CT or MRI just for your own peace of mind. Sarah, try not to worry. I had the exact same symptoms as you. 3 years is a long time. Why don't you go for tests, like balance testing and at least get a clear diagnosis. It might make you less anxious. Your symptoms are very typical. My next-door neightbour started with this crap the same time as me, and still has it, although she has had good periods as well. I hate to break it to you menopausal ladies, but after the change, it's not much better, you get hot flashes for a long time, and it doesn't help if you already have this. My doc says this is a virus and stays in the inner-ear or nerve forever, but flares up, especially when the weather is humid. Well it certainly has been humid here. As for anxiety isuues, they go on for a long time, I can certainly sympathize with that. Who wouldn't be anxious when you are going through this?Easy for people to tell you to relax, fact is you just can't. Has anyone flown with this? Haven't been anywhere in two years, am afraid I will start all over again. Everyone take care, Maria

Hi Maria

I, like you, have never suffered from allergies until after I got Labs. I didn't even realise that I did suffer badly until my GP looked up my nose a few months ago!

I did go for all the testings at the ENT and my final diagnosis was vestibular neuronitis due to the fact that I have problems with my balance. Strange you should mention your neighbour having this too because my neighbour from my last house has also been suffering with this. Also a friend of mine from the next street has had it (not as bad as us). Strange isn't it? But then again it is caused by a virus. Oh, and thanks for shattering my hopes about the menopause! Here's me thinking it was all going to disappear once I had gone through it! Once all the hormones and all that had settled. I'm not in menopause yet but at 48 must be close. As I always feel pretty dizzy and my balance goes haywire at period time I was hoping that once they were out of the way things would be good. Oh well, think I'll just go jump off that cliff now - lol!

I haven't flown since I got Labs and have totally avoided it though lots of people are fine with it. I also steer clear of boats. But, that's just me and I'm sure you would be fine if you were to go for it!

Take care

Sandie xx

HI Sandie: Well your menopause may be okay. You don't have as many ups and downs, but the hot flashes continue for a while. O the fun of growing old! I'd have huge anxiety regarding flying. I guess I am not ready, and with this latest flare-up, (the first in 7 months), it's making me even more nervous. Boats were never my thing, so that's okay. The humidity is pretty bad here, my de-humidifier in the basement has to be emptied out at least twice a day. I see the Doc tomorrow anyway for an annual check. But I'm sure he won't shed much light on the situation, except to tell me I have to live with it. Do you take anything for your allergies? I have some nasal spray which works only marginally. My nose is really plugged at the moment. We seem to have the same symptoms, I was diagnosed with VN too based on the caloric test and no hearing loss. As I said in an earlier posting, recovery is not linear.But at least we know we will recover.

Take care, Maria

Hi Maria

Yes, I do take stuff for my allergies. I take an anti histamine pill every day (benadryl), and I use a nasal spray (beconase) twice a day. I have also been using a saline nasal spray which is totally natural (just salt water), and this is really good at shifting the gunge in the nose! The effects don't last long but you can use it as often as you want.

Hope it goes ok with your annual check.

Sandie xx

Hi Sandie: I had a good laugh when I read about the gunge in the nose. Ain't that true. I use the saline spray too, as well as another one (forget what's it's called). My annual check went fine. He says I'm healthy. When I complained about my inner ear symptoms, he said "don't worry, it's just a virus". Obviously he has never had it. It's darned humid here,not helping the Labs situation, although I feel somewhat better after having a heck of a weekend with incredible dizziness and nausea-first time in 7 months. I guess I shouldn't complain. Some people never have a break from the symptoms. I think back longinlgy at the pre-labs days, when I never had to worry about being dizzy. Taking a flight would be nothing. I asked my neighbour who has had labs for 20 months if she would fly, and she said no way. Even a long car ride would be too much. It's not just the flight, but airports and people moving and bright lights etc. How are you in cars,Sandie? I remember last summer, you got sick when you went to Scotland was it? Take care Maria

Hi Maria

Glad your annual check went well. Mmmm, it's always the same with these docs, even the so called expert ones, they haven't experienced this so they don't know what it's like to live with it. I often say that I would love to give this to some people (i.e. my boss), just for a little while so that they can feel what it is actually like. Wicked or what?

Where is it that you live? You have mentioned humidity a couple of times. It can't be the UK, at least not up north, as it has been freezing here some days. I've actually had my heating on a couple of times over the last week!

I'm like you in that I don't suffer symptoms 24/7 but when I do have a relapse it takes me months to get back to 'normality'. I tend to suffer only minor symptoms in my 'good' periods so i suppose we shouldn't really complain. However, it does get so frustrating that you are never fully clear of it.

Yeah, last year I did get really sick after the long drive to Scotland. I don't do the driving but it is about about a 300 mile drive. I can feel quite bad in the car but not every time. Just like sometimes I can be totally fine in the supermarket/busy places etc and then other times it just washes over me and I have to get out of there fast.

Oh well, maybe one day it will be a distant memory!!

Take care.

Sandie xx

I am going on 8 weeks I have high anxiety right know my vision is most affected not really blurry eyes but kind of shake a bit. I have never had the real bad vertigo my vision and mental end of it (brain fog) is the worst. I am struggling as I am a farmer and cant just take time off is really hard driving in the field bouncing around. Some days I think I am losing my mind. 12-16 hour days in the tractor are mounting making the anxiety worse. Good luck everyone.

4 months now and I just had my best week so far. A whole week with close to zero symptoms. I ran twice in the mornings....without feeling pukey or faint or off balance afterwards. But today I woke up a bit dizzy and nauseous. I still think my week of nearly no symptoms means I am close to a full recovery. What a blessing and joy that would be.

Jeff - don't get anxious! Try to accept what is happening and not worry. The brain fog will eventually lift, your gaze will steady. I turned into a basket case from worrying about this illness. I know it is hard not to....without a time-line to recovery, but try not to. Make others sympathetic to what you are going through so that they let you rest when you need to. You will be fine. It is not serious, life-threatening, just annoying and really crappy at times.

I am going to fly at the end of August and I'm not really worried about it. I've had some car rides make me nauseous and others where I've been fine.

Hi everyone:

Jeff: your symptoms are so typical. You are not losing your mind, but the anxiety can be bad with this. We are all with you, it's such a frustrating illness. But you are not really sick, your brain is just getting mixed signals.

Sandie, I have exactly the same problem, only minor symptoms during my good periods, here and there, clears up quickly. This relapse has been a bad one. Only a week or so, but feel like c--p. It'll probably take time to get over this one. Ugh! In answer to your question, I live in Toronto, and this week the humidex is really high, and I'm pretty sure my relapse is connected to that, since it started around the same time the humidity starting being high. Yesterday I was fine, today I feel awful. The worst part of this illness, are the ups and downs. Take care eveyone Maria

Hi I'm Stacy and I was reading all of your comments about Labyrinthitis. I got it Friday the 13th (of Feb.)BIGGEST NIGHTMARE I am in my 5th month and I don't seem to feel any better then 3 months ago. I'm depressed and feel so alone in fight this. I went to a Hearing and Balance center where they tested me and said oh you lost your balance on the left side bla bla. They showed me somethings to do everyday and sent me on my way. Ok, now what? I've tried everything I walk, jog, shop you name it and I still feel extreme dizziness and bubble headish and walk like a bad drunk. It seems so good to read that there's others who are going through this nightmare too.

I've had it for 7months and from everything I have read everybody recovers at a different rate, I am now almost recovered but still have a slight internal swaying feeling, what I've noticed is that you cannot feel improvement day by day, its more like month by month you will see small breakthroughs in your recovery. What helped me the most was exercise along with acupuncture and herbs, exercise everyday no matter what, it will make you feel dizzier but with every session your body will start to compensate. Herbs I took were Cordyceps for the immune system and Gingko to help bring more blood and oxygen into the inner ear. I also found Zyrtec and Steroid Nasal sprays to help with reducing the pressure in the sinuses. Stay active and stay positive, I thought I was also losing my mind but stay strong you will get better its just going to take some time. In regards to flying, I have flown 4 times since I got Labs and didnt notice any real problems other then pressure in my ears.

DC

Hi everyone

I started feeling strange on 16th April 2009 and at first thought it was a hayfever tablet which had somehow drugged my brain. About a week in I started having severe panic which lasted for weeks and I sill don't fel it has completely gone away but its a lot better. I feel off balance all the time and get really fatigued mentally after doing two hours at work. I took a month off work and then returned to half day which I am still doing. It's really hard to see improvement because it happens so slowly. I have not been diagnosed with anything yet but am seeing a private ENT specialist as NHS are useless to say the least. Am due to have a caloric test next week. Hearing test has shown mild hearing loss in left ear. When this started I was convinced I had some kind of brain damage but doctors have convinced me this is not the case. Nobody who has not had had an inner ear disorder can imagine how it makes you feel and how scary it is. I really feel for everyone who is suffering and pray that we all recover.

Hi everyone;

Jemma, good luck on your caloric test. Maybe the hearing loss is connected to an inner ear problem. You sure sound like you have all the symptoms. It's hard to tell anyone who hasn't had this what it feels like: there are so many symptoms. Tired, dizzy, nauseous, head full of cotton, marshmallow feet, not to mention just feeling bad. When I first came down with this, I though I was dying- I have never had anything that made me feel so bad. But people look at you and say "but you don't look sick!" All the while you feel just awful. And you are right, it's really scary. I couldn't imagine that a simple virus could turn your life upside down. But it has. You lose your confidence, and just when you feel better and get confident, bam, there's another relapse. We are getting nothing but thunderstorms, so my symptoms are really acting up. Hopefully we will get some dry weather soon. I don't think with the amount of rain we have been getting, that I will need to water the lawn for the next ten years!

Hope everyone is having a dizzy-free day.

Cheers, Maria

Hi everyone,

My name is Natasha I got diagnosed with Labyrinthitis April.14 2009 I am still battling this crazy thing trying to stay positive but considering I had to take a semister off school and cant work its been hard very hard I keep waking up each morning hoping this will be the day I feel better. I just had a question I have the foggy feeling, lightheaded feeling, fullness in my ears I was just wandering if anyone had a constant ringing in there ears and if there is anything to help this ? Its so annoying if any advice that would be greatly appreciated...Its so nice to know we are not alone and the recovery stories are giving me hope.

P.S Stacy I completely understand what your saying stay strong we can beat this :)

I have only had this 8 weeks but I have noticed that caffine pop, coffee, even chocolate make things worse. Dont know if that helps anybody. Has anyone had a bad post nasal drip with the Labs. I have also been on real high end oil of oregeno drops and seems to be helping. Best of luck to all

STACEY - you seem to be as depressed as me but I stay strong by thinking one morning I just might wake up and it might be gone good luck and stay positive all the best

Hi Jeff

Just to let you know that I have had severe post nasal drip and a host of allergies since I started with Labs. Before I got Labs I was not allergic to anything!

I didn't know that I had post nasal drip and that the lining of my nose was severely swollen until a few months ago when my GP had a look up there! This is, would you believe, after many visits to the ENT where they have never lookd up my nose - unbelievable!!! I am using a steroid nasal spray and a saline nasal spray and take antihistamines every day but it is still there. And, I do think that this is part of the problem for me in still suffering after 4 years.

Take care

Sandie

Hi Angela

I cannot tell you how delighted I am for you. I cheered when I read your last post! I know you still have no proper answers but that fact it's not cerebellar ataxia is bl**dy brilliant. Which basically means you can recover 100%. Fantastic. I understand the not knowing thing stinks but it's still a major victory.

Don't be mean to yourself. This illness makes everybody, angry, depressed and off their rocker (the latter I already suffered from) I'm sure your situation is made more complicated by the scoliosis. This would explain a lot as far as your extreme symptoms are concerned. Are you taking gingko? Or having head massages? I say that because they made a big difference to me. I would look into anything alternative. It's pretty apparent the convential stuff they've tried on you has been total rubbish!

As for the P45 incident... Wow what bright spark put that in the post?! Angela, don't be upset. They're just a bunch of meat heads. I bet your boss wouldn't have lasted a week with what you've got. Never mind 18 months. Tw*ts. Fight them all the way.

Let us know how your appointment with the neurologist goes.

Jeff.... I had lots of weird eye movements. I had nystagmus(eye ball shaking) and then something called superior oblique myokmia (nerves and muscles around the eye twitching) Both brought on by labs and I'm happy to say are now gone. It will stop :)

Sandie and Maria. Fab to hear from both you girls. X

Welcome to everyone new.

Lots of love

Katiexxx

Hi Sandie

Yeah I have bad nasal drip but it is really bothering my throat and chest my throat is always inflammed . I go to see a well repected ENT in 3 days. I have been getting real strange muscle twitchs in my one arm as well. I am suffering from severe fatigue as well, as I cant take time off work.(farmer) We make 80% of a yearly income in the summer. I am really suffering with this, runny big equipment all day is difficult and the stress is mounting. I am at the end of my rope (anxiety wise). I have always been super healthy my whole life and it is hard to deal with something that I cant just beat. I pray everyday that I wake up and this is gone. Although my wife has never had any illness like this it really helps that she understands that for me to be down this long something is wrong.

Well all the best

Jeff

Hi Jeff,,

The post nasal drip is a nightmare, and could be made worse because you work in the fields(allergies, hayfever). Mine has been much worse during the summer because I suffer from hayfever, (nose running, itchy eyes and asthma gets worse with the pollen.) Do you use antihistamines? My throat is also sore now and again but nothing major. I also suffer from fatigue but this can actually be a symptom of hayfever too. But it is most probably from the fact that your brain is trying to compensate for the dodgy signals it is receiving from the inner ear. This in turn makes you tired because it is tiring trying to make sense of it all, poor brain!!

Jeff, it is very hard to deal with this stuff but you will get better. Try not to be so hard on yourself and I know you are very busy but take regular breaks and rest while you can. For all you have a very physical job, you are lucky in a way because you are outdoors and believe me that is the best place to be when suffering with something like this. Being indoors, in busy environments is so bad! At least you are out there with no-one to bother you and loads of fresh air!

The anxiety is also part and parcel of this so don't worry too much about that, it will also go away when you start to feel better. If you worry you will make your symptoms worse and then your anxiety gets worse - a vicious circle!

Don't put too much hope in the ENT - I saw the top dizzy consultant at my ENT and he did nothing for me. There really is not a lot they can do for you although the exercises they give you can help, but you can get them off the internet!

I am glad your wife is being so supportive because that will be such a help to you. Lots of people don't get this support and that must be awful for them. Just to have someone that understands is half the battle. My husband has been great for me as he also knows that I am not the type to feign illness! The thing with this thing is that you actually look well and healthy, so people don't really understand.

I hope your wife is having a look on here with you so she too can understand what you are going through. Hopefully, it will not last too long for you.

Take care

Sandie x

Had my caloric test today. It made me really dizzy when he put the warm water in my ears but this is normal apparently. Afterwards he told me there was no sign that anything is wrong with my ears and he does not think it's ear related. My left ear does feel strange, kind of full and uncomfortable. I am not sure what is wrong now. Has anyone else had balance tests which were normal but still has an inner ear problem? I feel constant imbalance unless lying down, never had the spinning vertigo thing though. My ears, especially the left one, feel full and twinge sometimes. I get extremely fatigued after a few hours at work, on computer etc. Like a kind of brain fog and drained mental fatigue. I also feel strange in shops and places with lots of visual stimulus. If it isn't an inner ear problem I just can't imagine what else can be causing it because it doesn't seem to be getting worse or better and the doctors don't think it is a brain problem. Any ideas anyone?

Hope you're all ok Jemma

Hi everyone: Jeff I am so sorry you are having to suffer this crap. Especially if you have the aditional pressure of working extra hard in the summer. We are all rooting for you. It sure isn't easy. You are blessed with a wonderful supportive wife. Jemma, lots of people have the caloric test and are told it is normal. But apparently, according to what I have read, it's not all that accurate because it is not that sensitive. So if you have a mild problem, (which can still be hell) it doesn't show up on the test. Very difficult to be sent home and told that is nothing wrong with you. I was almost relieved when I was told my caloric test showed a weakness in the left side. That's when the doc started taking me seriously. Your symptoms are exactly like mine were, fullness in the ear, slight pain sometimes, and this butterfly kind of feeling. And always dizzy, and like you I never had the real vertigo and never felt dizzy when lying down. Walking was a nightmare last year in the beginning, always felt like I was being pulled down, and the looking through the wrong glasses kind of feeling. Do you have nausea Jemma, and a kind of sick feeling? Honestly I don't know what else it could be, though I am not a doctor. But just because your caloric test showed nothing, it doesn't mean you have nothing. Has the doc considered MAV(Migraine Associated Vertigo) apparently the symptoms can be simillar. But if it's in one ear only, it's got to be an inner-ear thing that the test just didn't pick up. Did you feel the same amount of dizziness on both sides when they did the test. I felt a definite difference (hardly dizzy at all in the left ear) and was going to have it out with the Doc if he told me the tests were normal. Anyway, don't know if that helps. How long have you had it? Am having a better week this week, almost normal. I won't say it too loud though.

Katie, nice to hear from you. Sandie, any better?

Take care everyone Maria

Hi

Thanks Maria - Previously the doc said I had mild hearing loss in left ear and I felt less dizzy when the water was put in the left side so I think it could be a problem with the left ear but he said both sides were in the normal range of vestibular function. Like you said though if one side is different it could be a mild difference but causing me to feel awful.

I dont feel nausea but just always imbalanced and get so fatigued. Also suffer some confusion/brain fog which has improved a bit over time but can only do half days at work. It started mid April and caused me to panic at first but this subsided and now Im left feeling strange and imbalanced and tired. I just cant think what else it can be and it seems to fit with a lot of th other ear symptoms people have.

Thanks for your advice

Hi Maria,

I'm really quite good at the minute. I have just been into town and coped quite well! I did have a real bad day two days ago and my balance was all over the place but it didn't last into the next day! This is because for me, it is 'that time of the month' so my hormones are all over the place! I find that the extra fluid in my body (water retention) plays havoc!

Anyway, I took a Stugeron tablet this morning before I went into town because I am usually terrible in crowded places and I had no dizziness or balance problems. I have heard that some people are treated with this for ear problems so I thought I would give it a go. It is a travel sickness tablet.

Jemma, I agree with Maria, this is probably 99% certain to be an inner ear problem! The tests they use are rubbish and are not conclusive. The ENT's are also useless and a waste of time in my opinion! Sorry, I know I am not a doctor but they make you so mad at times! All your symptoms do seem inner ear related and I did not have the spinning vertigo which usually occurs first or any deafness and I only ever get slight nausea. Everything you describe is the same as me and are all inner ear disfunction symptoms.

Take care

Sandie x

Hi everyone: Jemmma, for a good descrition of the symptoms go to Labyrinthitis/org. UK. If you read the case histories as well as the symptoms, you will find that yours are right on.

I'm having a couple of not-great days, after 5 really good days.What a crappy illness. Going on two years.Yesterday I sat out in the sun with a book, it was a beautiful day, and when I came back in I didn't feel well. Is the sun bad for you too? Maybe the humidity.

Sandie, glad to hear you are feeling better. I have never tried Sturgeon. Is that a prescription? I have heard sea bands are good too.

Jeff, caffeine ,chocolate etc. are often an indication of Migraine Associated Vertigo. They are on the no-no list. Are you sure you don't have that?

We have been having a garbage strike in this city for around 6 weeks, the union want 18 sick days. Hello! We are in a recession! So everything stinks. But the rats are loving it! So guys, Toronto should definately not be on your list of places to visit, it's not a pretty sight.

Better days are ahead, (I hope)

Cheers everyone, Maria

Hi everyone

Thanks Maria - Yes been on that labyrinthitis website so many times and also emailed Emma, one of the site's creators, a few times. It is a really good website and it's been really helpful to me as otherwise I could not have believed this could be an ear thing. Most people just would not have a clue how strange it can make you feel, even the doctors don't seem to realise how scary and debilitating it can be. Goes on so long as well, its hard to tell if you are getting better or just getting used to feeling ill.

Anyway we all plod on hoping each day brings some improvement however small.

Jemma

Hello All! Things had been going well. Actually had a few weeks with barely any symptoms - yeah. Then it hits. My last post I had commented on the "waking up gasping episodes" Has anyone else had anything like this? I had such a severe attack a week ago, my husband almost called for an ambulance. I wasn't sure I would be able to breathe again. Terrifying. Long story short. Doctor set me up for a sleep study as she's convinced it's sleep apnea. I do not agree. I think it's an allergy of some sort. During the exam I mentioned to her that I was still having symptoms of Labs. She was very surprised and wants me to have an MRI. I told her about the blogs and how many people have Labs for years and she didn't seem as informed. Anyway, she's looking for a benign "acoustical neuroma"? I agree with someone else who posted that I feel this is unnecessary as I was having some long stretches between episodes. The solution is to narrow down my triggers. When I called about the MRI and found out a contrast was involved, I said no. I hate the idea of having a strange substance injected into my bloodstream - yech

Sleep study results are not back, but I do not believe it's sleep apnea. I've done my own research and found LPR Larynxpharengeal reflux, also spasmodic larynx, which is exactly the symptoms I've been having. So I'm on Prilosec twice a day and back to Allegra for the allergies and a nasal spray to clear my cruddy sinuses. I've also raised the head of my bed 3 inches and I'm watching my diet. Having a positive turn around! Head is clearing out, I'm sleeping a bit better and the Labs goes away. We'll see -

Laura

Hi to all,

Just want to introduce myself. I've come down with what i believe is Labs since 28th May 2009 and the first month was an absolute killer. I was so dazed everyday, walking on foam kinda feeling and throbbing headaches. I never got the Room spinning kind of dizziness, but more of a walking on the deck of a boat sort of feeling. The worst thing like Jeff mentioned is the Brain Fog and the tension type headache or pressure. I mean i can cope with the not walking straight, but the mental fog, just cuts like a knife.

Had CT scan and everything came out clear and will need to go to ENT to check on vestibular function.

I think i have crossed over the line to recovery now though, as the past week has almost been completely symptom free, albeit it is starting to come on again the last 2 days.

I have also been wearing this healing necklace thing called Phiten, im not sure if that has helped, but since i worn it, i am having more good days than bad.

The most important thing for me is to go out everyday and walk. I thnk the more you try to get it your brain to compensate the better.

This illness is no fun at all. But you guys have given me a lot of hope and advice as i always read your comments.

Does anybody else get this throbbing like headache on their temples? Its not always, but when i comes on, it makes the symptoms worse.

Well ENT didnt do much but she did agree that anxiety is making things much worse. So they gave me Xanax for times I am really bad. I am not a guy to ever takes medicine like that. Or even admit that I need help and cant get over this on my own. I am kinda disappointed in myself that I need it but the doc said sometimes these things are out of peoples control. I hope I am making the right decision, but has anyone else tried this.

Thanks JEFF

Hi Everyone, I have been suffering with BPPV for 3 years now and went through Vest. Rehab Therapy which seemed to work. I had a glass of wine Sat night and woke up with the spinning Sunday morning. This has happened many times before but my audiologist says it is not related to drinking. Does anyone know otherwise or has there been documented research?

Hi everyone: Hope everyone is feeling somewhat better. It's hard to deal with the ups and downs. Robin, I think drinking can exacerbate this problem. I don't indulge when I'm going through a bad patch, but when I feel normal, drinking doesn't bother me. But I can't see why it would wait until the following morning to act up, by that time the effects of the wine would have worn off.

We are still having humid weather, so I'm still in up and down mode, but this week was better than last week. Take care everyone Maria

Im feeling a lot better, still feeling that slight internal swaying from time to time and get a slight tingling in the scalp as well, but other than that I cannot complain. Ive come a long way since Jan when it all started, I just keep reminding myself that Im nearly there and too not think about it anymore, going through this has only made me stronger.

DC

Natasha,

Many people complain about the ringing/tinnitus in their ears after this... sadly enough, it is just like any of the other symptoms you have with this thing.. it will get better with everything else.

Hey Guys,

I have been dealing with this thing for 5 years now...... I am in the middle of a very bad patch -- been ongoing fo 2+ months and I am going nutty... Ughhh... Its been quite a while since I posted.. maybe page 5-6? I cannot remember. Anyways, I just wanted to mention the strange symptoms I get, and just to let people out there know that these are symptoms of labs.

1. Night Sweats I get these when My dizzies act up.. I wake up soaked.. when I am not dizzy -- no sweats

2. Vivid Dreams -- Very Vivid and colorful dreams about stuff I have no clue.. guess its like Alice in wonderland for my brain

3. Electric Shocks.. -- I get sorta these 1 second shocks that pulse through my head once in a while... sometimes there are alot.. sometimes none.. very strange indeed

4. Shaky Head -- I can wake up and feel my head actually shaking... I cannot even move my head up and down without it being jerky..

Hi Jeff,

Xanax can definateky help with the anxiety when it is bad... it will probably also make the dizzies less severe as it works by dulling the brain signals that cause the strange symptoms... However better it may make you feel, it should be taken in very small doses because it can affect your brains ability to compensate for the damage and thus recover....

I have used it in the past... If the anxiety is bothering you, it likely can get out of hand if not treated... especially with this illness as the anxiety and inner ear go hand in hand.... I would recommend researching an SSRI like prozac, lexapro... etc...

Wheres Anna,

There was a girl on here a while back... Her name was Anna... She had a PH.D. and she was suffereing with some severe symptoms.... Anyone know her outcome... I hope she is better and that is the reason why she does not come here anymore.

Anna, If y ou are reading this... I hope you are recovered.

Does anyone else have eye problems as a result of their ear problems. I have had a kind of stiff dry feeling in my right eye which comes from time to time. Also for the last two days my left eyeball is sore, when I move my eyes it aches and is slightly sore if I press my eyeball with my eyelid shut.

My ear feels uncomfortable deep inside. Still really tired but hoping it is slowly getting better even if it is happening very slowly.

DC - you are giving me hope that recovery is possible.

Sam - I have had night sweats and vivid dreams. They were worse at the beginning especially as I had really bad panic symptoms for the first few weeks. Fortunately that settled about 6 weeks ago and I hope it doesn't return as it was one of the worst things I have ever been through.

Hope everyone is feeling ok.

Jemma

Hi Jemma,

They were worse for me as well in the beginning.. During my good periods.. I dont get them... But I can usually tell when I wake up.. due to the type of dreams I had wetehr or not today will be a good or bad day....

Currently I am in HELLLL!L!L!!L!L

Jemma, I believe full recovery will happen, its just a slow process, I kept focusing on what I was feeling and that made me more depressed and angry. Now I focus on how much better I am compared to 3 months ago, the healing process seems to be very gradual and very slow, we have to just look at this as a minor setback in our lives and remember that 6-12 months from now we will be back to our normal selves.

DC

Yes I think you're right. Improvement is so slow you barely notice it then you remember certain situations and places at the beginning and think I must have recovered since then because everything feels a bit less strange and I am managing to do more than before. It is easy to think there is no improvement when you don't feel completely right but like you say hopefully in another 6 to 12 months we will be able to forget all about this.

Jemma

Hi Everyone,

I'm doing well, had a really good two weeks straight of virtually no symptoms!! (I'm at 4.5 months), then PMS time hit and my balance was off again a bit but nothing that bad. Ladies, from what I have read, this seems typical?

I was really excited/happy to be able to start running again over the past three weeks. I was so slow and had to walk a lot the first couple of times, but last weekend I did 6 hilly miles, without walk breaks. I had arrived at the trail, gotten out of the car and felt the drunken walk, off balance thing, so I did not have high hopes for the run but it went fine. It feels a little bit better each time. Getting some cardio shape and muscle mass back has been so nice after being so sedentary for 4 months.

Night sweats and vivid dreams, Yup totally can relate to that! Some nights I feel all I do is dream, and that I don't get the really deep sleep I need. Thankfully, I never had the head zaps, except maybe once...woke me up in the middle of the night?

Jeff - please be careful with the Xanax - I was in the same situation as you, getting the bad anxiety and additionally, out of the blue, panic attacks in the middle of the night. I got some Xanax from my doctor, she said no more than 2 or 3 pills a week (0.25mg) and I was faithful to her instructions, but the anxiety/panic got worse anyway. Since I am very sensitive to drugs and have been known to develop "rebound" from short-acting drugs, even ibuprofen, I think the few times I took the Xanax might have led to a bit of rebound anxiety. Eventually I got so ramped up I couldn't sleep for more than a couple hours for days on end and ended up having to be hospitalized and heavily sedated. You can read my earlier post on this page. I have never suffered from any mood problems like this before, I am 45 years old, so their tentative diagnosis that I might be manic/depressive I still find hard to believe (average age of onset is 22 years old). I think this was entirely due to the Labs anxiety, and a basic predispostion I have to anxiety.....but not THAT kind of anxiety.

I am now taking diazepam (long-acting) and feel it has helped me tremedously. I know I have to wean off of it as soon as I can, and I am working with a nurse-practitioner to do so. She wants me cutting the doses a little faster than I'd like to. I already went through severe withdrawal symptoms when I tried to cut down the Klonopin too quickly, so I am doing it in the least painful way, which is reducing the daily dose by 1mg, and holding at that dose for a week before the next reduction, roughly, depending on how I feel. Thank God there is another drug that I can take, that takes away the anxiety when it flares up. It is non-addictive, very sedating and helps me sleep. It is INVEGA, an anti-psychotic, but is also used off-label for anxiety disorders. One pill at the lowest dose and I am good and mellow for at least two days, and I've only taken it 5 times in the past two months, and twice was because of the Klonopin disaster when I tried to cut my dose too quickly. I couldn't tolerate the SSRI I was given, but typically Labs patients should try an SSRI first if they are having a lot of anxiety and depression from the illness. Trust me, Benzo's are not the way to go, unless you can guarantee you will not use them very often or steadily for very long (no more than two weeks).

I have read up on CBT for anxiety disorders, and I think that has helped me also. I no longer fear when I start to feel off-balance in grocery stores. I found that by walking a lot slower in stores...I don't notice the balance issue as much and it reduces my anxiety.

Just was diagnosed with Labyrinthitis today. And reading through this is freaking me out on some levels and comforting me on others (ie. it has an end!) I am a mom of four little boys and I have two dogs... how will I survive this? How common is it for this to last for months and months? I've spent the last few days crying and trying to figure out what led to this... went on vacation, swam a lot, went on a big boat for a short trip, drove a long way, got a little cold probably caught from my three year old who had croup... suffered extreme insomnia one night then woke up with a terrible headache that lasted all day and then it became this awful constant rocking and swaying sensation, off balance walking (is this normal?! to feel like a drunk?), exhaustion... I'm frightened of how long this could go on. When do the good days start coming? After only a week of this I am already experiencing the feelings that many here have expressed... I'm just praying for this to disappear quickly!

Thank you to whomever started this forum.

Nan in Can, For some 2-10 weeks they completely recover, but for others it can be an ongoing battle lasting up to and beyond 12 months, something that will help is gingko, I just wish I started taking it as soon as I came down with it. Also I have had good results with acupuncture and massage, stay positive you will recover.

DC

Hi Nan,

Sorry you are with us now.. However, the bright side is that it will end.. Its hard.. (actually almost impossible), but DO NOT let the depression hit you.. it will make the ordeal much worse than it actually is... just try to do your best to stay together and get through the days... Noone here can tell you how long it will last.... Statistically, 3 months and you will be back to normal... others have this for years... HOWEVER!! When I say they have it for years, that does not mean it has been constant.... its most probably up and down good days, bad days etc.... I hope this doesnt scare you, and I believe you will recover... Just be prepared for the ups and down that go with this thing.. you may feel fine one day and then the next feel like garbage.... dont let it get to you... its just normal progression.

I have tried ginkgo biloba - started by having 2 tablets a day. I did notice an improvement after the first week and I feel less off balance now however it seemed to give me bad headaches and I have had to stop taking it now. Also seems to make my eyeballs sore and my eyes a bit bloodshot. I wondered if this is because it dilates the blood vessels round the brain and head area? has anyone else experienced this?

Jemma

Hi everyone and welcome to all the new people. Sorry that you are all dealing with this.

Nan - I can relate to your situation having young children myself. I hope you recover soon. Most people recover after only a few weeks. My labs started about 10 months ago and I think I can say I am pretty much back to normal. What I tried to do is eat really well, stay active, (not hard for you with 4 little boys), take vitamins etc. I also found that if I drank coffee or alcohol I felt worse. There is plenty of advice on these pages about supplements etc - read them and see what you think. For me It was a hellish few months made worse by anxiety - hopefully you have a good support network around you that can help out a little bit? Hope you recover quicly. Take care everyone!

Cathy

Thanks for the responses and encouragement. I don't have family nearby but thankfully good friends and they have taken the boys off of my hands for the last few days. I also have made an appointment with a balance center nearby (associated with a physiotherapy center.) I almost sang for joy when I found out that I wouldn't have to be referred by my doctor as those referrals often take many months here.

I am thinking of making an appt. with a chiro and massage therapist today... my neck is really bothering me. Thanks so much. I will survive! Fortunately I've staved off a couple of panic attacks already so I think I might be past having to deal with those. I think I need a tranquilizer at night though. It's really hard falling asleep normally now.

Thanks again everyone!

Hi all,

Been ages since I've posted here! I've not been diagnosed with anything yet but over the last 14 months I've had 7 attacks of nausea and vomiting with unsteadiness and dizziness.

The attacks were relatively short lived and in between them I had a little bit of residual dizziness but was pretty 'normal'.

3 days ago on Saturday night I had the worst attack yet, my whole body started feeling like it was being pulled to the left side and I couldn't walk properly. I vomited and dry reeched and fell over and cried for about 8 hours and when we realised that I wasn't going to get better on my own, went to the GP for an injection.

It's Tuesday now and I'm only marginally better. I do have my appetite back (for dry, boring foods) but this unsteadiness is sticking with me, I'm hunched over this keyboard like a half-dead zombie right now.

I'm getting a CT scan done tomorrow, see how that goes.

From reading your posts it seems like most of you have been diagnosed with Labs? Does that 'come and go' like what I've described? I have no ringing in ears or loss of hearing or even headache at all...

Sick of this thing whatever it is...

Take care xx

Beck - Perth, Australia

hi Beck,

Sorry your feeling so awful.... I am not sure what you have, but it is possible that it is inner ear related... Maybe Meneires?. I myself do have epiosdes usually sparked by something like a cold which throw me into dizziness for months.. I could be fine for months at a time and then BAM... Its miserable I know

Try to hang in there.. get the basics ruled out and usually the diagnoses of Inner Ear disorder is the last to come.. Either way you can do VRT and that seems to help people...

Hi everyone,

Thanks Sam for the response the the ringing in the ears is much better comes and goes but mainly I do not even notice...It's been about 4 and half months doing much better so I am really happy was kinda scared for awhile.This site is great thanks for all the stories shared really helped me feel at ease.

P.S For anyone planning to fly I just did a couple days ago was really nervous about it but everything was fine and I was not effected so just wanted to share that...cheers everyone wishing a full recovery

Hi,

I've been battling with labyrinthitis for over 10 years. First time I got it was in college and like many of the posts, I couldn't move at all and have no idea how my parents took me to the doctor. I was informed that it was due to a viral infection. Ever since then, I've had recurring episodes at least once a year, usually more often. To this day, I cannot figure out what triggers them (I have lots of theories that I make up to try to figure it out, but I'm sure that they are all wrong!). I'm so tired of doctors just telling me that there is nothing you can do. Go take meclizine and it will pass in a few days. OK, that's fine if it happens only once but if it reoccurs over and over, this is not a solution. I just cannot believe that with so many people that suffer from this, there isn't some form of treatment or prevention out there to help us. Has anyone tried anything that has worked??

After many years of suffering with this, I did go to an osteopath. The first time I went to see him, I was so truly excited because I was free from the vertigo for over 1 1/2 years! It was amazing. But then it came back and has been coming back at least twice a year. I continue to go see the osteopath but now am back to being frustrated again. Anyone try acupuncture? Vestibular Rehabilitation Therapy? Anything else that you can share that I can look into. I'm determined to get some help for this in some way.

Hi folks, I'm now into my 8th month with VL, but am hopefully starting to improve a bit, the bad days are less and less frequent, but I have a couple of questions for those who have recovered from it. I have a constant buzzing in both ears which doesn't seem to be going away and my memory is shot to bits with this, I have trouble remembering detail and concentration issues, does this improve with time? Am planning to return to college full time soon, just a bit worried that this will affect my ability to study.

Thanks,

Gary

Gary - Im also in my 8th month and Im function all most normal but I still dont feel Im 100%, I had buzzing in my ears initially but it passed, try some Gingko really good for inner ear problems.

My main issue these days is pressure in the sinuses, and slight imbalance, which leaves me feeling like I haven't got my legs back yet, its really hard to explain, its as though I dont feel right on my feet and get this anxious type feeling in my lower legs.. Can anyone else relate to this...

DC

I see many people have some of the same symptoms as myself. I feel greatly empathetic towards everyone suffering from the disastrous dizzy disease! Doctors don't know what to do, friends and family look at you like you're nuts or brush you off by making trite comments like "Oh I get that sometimes when I have a cold." or "Don't be silly, it's just dizziness.".

I've gotten what doctors diagnose as inner ear infection (Labyrinthitis but there is another name for it) a few times in my life. It lasts about two to three weeks and goes away.

I have two questions for you guys and am hoping you can help me understand a little better.

1. I had terrible ear infections as a child (I'm now 36) and I had to get my adenoids removed and tubes put in my ear (to widen the eustachian tubes so I wouldn't get as many infections). When a doctor looks in my ear the first thing he/she says is "You have a lot of scar tissue" and they say my ear looks "milky" or cloudy. Does having these issues as a child cause dizziness and other ear problems as an adult? Am I looking at a long life of dizziness?

2. I woke up early this morning and tried to go back to sleep. I sleep on my side. I noticed I was a little dizzy when I first laid down on my side (either side) but it subsided quickly. Then I started to fall asleep. Within what seemed like seconds but could have been longer since I really think I fell asleep for a moment, I had a sensation of spinning violently. I could have sworn I woke up and opened my eyes and the room was spinning like you wouldn't believe (much more intense then my previous bouts of Labs in the past). It was SOOOOO violent that my heart started beating fast and I felt a little nauseous. Within seconds it was gone. The room was not spinning at all, nothing was wrong except my heart was still beating a little fast from the scare.

My husband said I just had a "waking dream" and he has felt the sensation of falling even after he felt like he was awake but in reality he was just coming out of "dream land" as he puts it.

Do you think this is a possibility? The spinning did go away immediately after I had rubbed my eyes and completely woken up. Very, very, strange indeed!!!

HI everyone: Well there are a few new people so welcome to the site. Nan, we are all thinking of you trying to deal with this beast at the same time as dealing with 4 little ones. Hope this goes quickly for you. Gary, I had buzzing in the ear for a long time, (now 22 months into this illness) but I never had memory problems or anything like that.Just awful dizziness and some nausea. I did have a seven-month good period,so it does get better, but can take ages to go away altogether. I try and be thankful for the good days. Beck, I'm wondering if you have Meniere's too. Have you been checked out? I have Neuronitis (same as Labs except in the inner ear nerve) and yes the symptoms come and go. They can go for a long time, and they can stay for a long time too. But never vomiting or room-spinning dizziness. But the pulling to one side, I had that all the time. Hopefully the CT scan will at least rule other disorders out. If you have balance tests, they help to idetify the specific disorder. It helps to know, because not knowing is hell. Everyone else, hope you are having better days, Sandie and Katie everything okay? Cheers, Maria

This board has been very helpful. I was diagnosed with Labs at the beginning of 4/09. I previously had a history of Menieres, however after seeing the ENT and having caloric testing the asymptomatic Labs diagnosis was given. I took 4 weeks of Vestibular Rehab which I believe helped, probably more in a matter of self-confidence than any real physical change.

My symptoms have changed over the past 5 months but still consist of: Lightheadedness, a feeling of being yanked by a rope tied around my head, muscle tightness in my neck going around and up my left ear and above my left eye, eyes feel out of allignment with one another, left eye feels as though it is being pulled up and to the left. Overall sense of being in a mild trance and sense of physical detachment.

Six weeks ago I decided to visit the ENT again. In that my caloric (dizziness tests) showed asymptomatic elements, I was then referred to a neurologist, who to my surprise and somewhat relief, diagnosed me with having had a mild stroke of the cerebellum. I say relief only because this would put all of my symptoms to a nice understandable cause. By the way, several days earlier I went to my opthalmologist who gave my eyes a clean bill of health.

Last week out of the blue, I stood up and for the first time felt an incredible dizziness (intense vertigo) I collapsed back down in my seat and then proceeded to pass out. My wife called for an ambulance. After they arrived I threw up violently (in the toilet thank goodness) and I was taken to the local hospital for observation and further testing. I took every test there was except a driver's test. MRI, CAT scan, EEG, EKG, echo cardiogram, sonogram for carotid artery, etc. etc. I was seen by Cardiologist, Neurologist (different guy than the "you had a stroke" fellow) and a whole stream of white coated people. I was home in three days and the findings were a vasovagal episode. What brings on this episode is anything you can imagine: sit up too fast, sit down too fast, laugh too hard, too cold, too hot, etc....... The interesting thing is that the second neurologist has doubts that I had a "minor stroke" (MRI, EEG and Catscan all negative). He has subsequently recommended that I see a Neurotologist.

So, has anyone out there had any complications connected to their labyrinthitis such as this (or anything else for that matter). I felt soooo badly a few days ago that simply coming back to my normal "bad labs" symptoms seems like a plus.

Thank you for reading this novelette.

Hi not really sure what's going on with me. I had a ear polypt in my ear and used anti biotics and that's gone. But for the past four weeks I have had symptoms that haven't gone away 24/7. These include the rocking in boat sensaion. I font feel real it's like disrealzation lightheded eyes strain. Seeing colors and circles move down eyes. Tingling all over body. Feeing faint all the time. Everytim I even move I just feel so floaty and have hard time dong anything bed ridden for a month. I'm trying to figure out if this is what I have bc I didn't have the flu or anything just the ear infection. Well 4 weeks haven't improved getting to be scary I'm Only 20 yrs old and understand this will take time I'm trying to do vrt everyday. Had anyone else had all these sypmtoms and have a hard time even moving for a month straight housebound? Thanks guys

Hello everyone! Welcome to all the new people:)

Mon... Have you tryed Ginkgo Biloba? That helped me alot. I also took ginger, fresh rosemary and manuka honey and after about 8 months I was finally symptom free.

Gary... I had terrible problems with my memory. I would tell someone the same story 5 times and have no recollection of doing so! It does totally knacker your concentration and your capacity to remember things. But it is tempory and it does come back. Promise :)

Hi Jeffrey. you're situation sounds pretty damn complicated. Although, I believe that a TIA can be easily misdiagnosed until properly checked out. One dr suggested that might have happened to me and another scoffed at the very suggestion. As it turned out I hadn't had a TIA. It's so frustrating. They really don't know enough!

Brett... We've all been where you are now. You might be one of the lucky ones and be rid of this soon. Most people recover within 8 weeks. The rocking sensation, tingling feelings are all part of it and will eventually stop. Keep going with the VRT and consider trying Ginkgo, it makes you feel half human again.

Maria :).... Nice to hear from you! How are you?

Sandie.... Long time no chat. I hope no news is good news?! :)

Angela... What's your latest? Hope things are going better for you. X

Lots of love everyone

Katiexxx

Well been going for walks everyday for about 10 minutes. It's just so werid because when I do I see circles all over the place and longer I walk I feel lie my body is just going to give out and fall and I get confused on where I am haha. I bought some ginkgo hope it helps. This is a life changer bc now I'm apperiating the abilty to walk and go to work which I can't even come close to right now. Coming into week 4 hopefully see improvments in next coupl weeks you all on here are amazing and this truly is a hard illness and is very scary with all the symptoms from the vestibular system in the brain been reading that it controls your sence of touch and nerves very intreeting things to think about. Well I hope everyone else is making improvments I'll keep everyone posted how I do as time goes on. But just asking I was never diagnosed so is a very bad ear infection possible for this? Thnks

Hi everyone

Katie - you said you recovered after around 8 months, did you have a diagnosis of labs? What were your symptoms and how did they progress. I've had this problem over 4.5 months - off balance fatigue, brain fog, confusion, anxiety at first and muscles trembly and achy, dry eyes and mouth, no official diagnosis from the ENT but I can feel that my ears aren't right. They feel full and kind of blocked inside, more with pressure than with wax or anything. I think i have improved but with such slow progress sometimes you start to question it.

Brett - you sound like you are really suffering at the moment. I can identify with the feeling that the longer you walk the more you feel like you might fall over. I was like that for 2 months or so along with really bad anxiety symptoms. Gradually, I have got stronger and the anxiety subsided. My confidence doing things has slowly increased. I'm at 4.5 months now and still feel weird and off balance but it has got better than it was. It is very scary but I think it helps to know that other people have gone through and are experiencing the same thing. Just hang in there and take each day at a time.

Hi everyone,

Hope everyone is feeling somewhat better. Took the subway this morning, no dizziness, which is a good sign after one month of up and down symptoms.

Jemma, I had the ears blocked thing for a long time. But one always seemed worse than the other (turns out that was the affected ear). Do you have sinus problems? That seems to really aggravate the Labs situation. Glad to hear you are better. The progress sure is slow, but I find the ups and downs are worse. Because you get your confidence back, then all of a sudden, it comes back and you feel you are back to square one. One heck of an illness. Brett if you have not been diagnosed, it's probably an inner ear problem, because it plays havoc with your balance and equilibrium. Hard to believe that something as minor as a virus could turn your life upside down. But because of the location it does. Walking was a nightmare for me in the beginning. You are doing very well in walking 10 minutes. Very hard espceially if you are so dizzy you can't stand it. Sounds like you are doing better. Hang in there, it does get better. Katie, Sandy, hope you gals are okay. Maria

Jemma...

It took 2 different doctors and a nurse and 3 weeks before they confirmed labs. Although the nurse spotted it before the first doctor did.

I didn't have true vertigo in the spinning sense. I had extreme dizziness and blurred vision. This got worse as I lost all ability to remember things, had extreme anxiety,stress,nightmares, obsessional thought patterns,also had terrible headaches about 6 a week,neck pain,sore hair ( if that makes sense) nystagmus, myokmia, -(both eye problems).The ground would never hold still,rocking sensation, different sized pupils. The list goes on and on and on! Right joyful experience :)

After 4 months the worst of the above had pretty much stopped. But is was slow and not as obvious as you might think. I was left with myokmia, which took a further 4 months to go away. I think it isn't that obvious because you're knackered. It's so exhausting being unwell! Takes many months to get you're strength back. I think you can feel unwell for longer because of that.

Hope you are doing ok :)

Cheers Katiexxx

Thanks for the comments folks but I fear something worse now, the results of my first MRI scan showed up "polypoid lesions" on my brain. Waiting to go back for a 2nd scan to confirm this and I don't know if these things are dangerous or even connected with the labs, time will tell.

Glad to hear that people are getting better from this curse of an illness.

Take care all.

Gary.

Hi

I have been reading back through the past posts on here and there was someone called El who posted quite a lot and by April this year was feeling a lot better. Just wondered if El is still reading this site and wondered whether she is recovered yet?

Jemma

Hi everyone,

Maria and Katie, thanks for asking after me!

Katie you are a darling - coming back on here and helping people even though you are recovered! That is so nice of you and helps people realise that there is light at the end of the tunnel!

Maria, you took the subway? That is excellent - keep it up. These things are sooooooo scary when you are suffering aren't they?

Well, I have been quite good lately. I have been to PARIS for a week and had a brilliant holiday!

I met up with my cousin's wife a few weeks ago and she said that she had suffered from the same stuff as me about 20 years ago. She was told by her GP to take Stugeron (cinnirizine) when she felt dizzy. This is a travel sickness pill and I did a bit of research into it and it is actually prescribed for people with Menieres disease, though I don't know what the dosage is. I asked my own GP about it and she said she wouldn't prescribe it because of side effects. The only side effect on the enclosed leaflet is drowsiness though it doesn't list what long term usage might cause. So, I decided that for my holiday I would take one every day and see how I fared. I would rather be tired than dizzy! It was brilliant! I had an excellent time, I was on the Metro system every day, I travelled there by train then eurostar, I was up the Eiffel Tower, I was up the Arch de Triomphe, you name it I did it. My husband and my daughter couldn't believe it! It was fantastic.

Anyway, whether it was the pills or not I don't 100% know but as soon as I came back to England I started to feel dizzy again and my balance went haywire. I have a lot of allergies and it could have just been that the air was different over there. But, since I have been back I have had a few full day outings as my sister has been visiting from down South, and have taken the pills and have been fine. So there you go. I won't take them every day but will take them when I need them!

Brett - you are so young to have this and must be wondering what the hell is going on. Just to let you know that I was also bedridden with this at first for a good few weeks - I think about five - I just couldn't walk properly. I was getting out of bed now and again but my life revolved around my bed for most of that time, mainly because I didn't know what was wrong. My first bout lasted 6 months and horrible thoughts entered my head which doesn't help. Keep fighting and keep going for those walks. I know you feel like you are going to collapse at times but it really is helping you and you will get more and more confident as time goes on. I have had this for over four years now and I still won't let it get the better of me!

Mind you, saying that, I have had to give up my job. I am much better than I was a few months ago but I have decided that it is so unfair that my employers have to put up with me as I have had so much sick time over the last few years. Though I do have good days, I have never been completely free of it and I keep having severe relapses.

Katie - I will be up in Scotland next week! Up to Aviemore in the Highlands! Only going up for three nights and staying in an eco chalet, made from willow! Whatever that might be! So pray for some sunshine for me!

Take care everyone and keep fighting!

Sandie xx

hi everyone. Well today is 4 weeks in and I seem to be getting worse and worse each week instead of better Laying down feels bad for me now. I was wondering I was taking tramadol pain killer for over a year for a soccer accident in legs could that drug ruin vesibular system? Or could ear infection cause this bc I had a bad ear infection I'm just trying to figure out how I got this. Well I keep going for walks but nothing seems to be helpi g I understand this can take a very long time and trying to stay positive. Everyone e starting to get mad at me like parents and girlfriend bc I can't do anything but they don't understand what this feels like to me. Thanks to everyone here I'll keep everyone updated. 4 weeks in hoping to see improvemtns soon thanks guys!

Hi Brett

Sorry you're feeling worse, I've not been diagnosed with labs but I strongly believe I have an inner ear disorder (since April). It started one day feeling off balance and progressed within a week to feeling really off balance, trance like, fatigued, brain fog, couldn't stand looking at my computer at work, feeling detatched, heavy head and terrible anxiety. Had to stop work for a month then returned to do half days, and I am still doing part time now. Over the first month to six weeks the anxiety subsided but the other symptoms were pretty bad. After two months or so they began to decrease a bit and recently I have been feeling less tired. However after just getting hope I may be recovering a bit the last few days I have been really dizzy as bad as ever. I spent today crying and have got really down as it feeels like this will never end. I get so scared sometimes.

I, like you, think a medication may have caused some damage to my ear(s)- in my case the antihistamines I was taking when this started. The doctors both private and NHS have been useless for me and not helped at all which gets me down even more as it feels like nobody cares or can help.

I have been taking ginkgo biloba and green tea supplements - not sure if they help, lots of people think ginkgo does. I have also been doing VRT exercises which i thought were helping but the last few days I have really felt a set back so am not sure now.

Sandie - really pleased for you getting a holiday and feeling better. You deserve it!

Nobody can understand what this is like until they have been through it.

Although Im at month 8 and feeling a lot better, I still get a fatigue feeling in my legs along with a anxiety feeling in my feet and calves. I think the reason is my body is still compensating for the balance issues and my legs have to contract harder to maintain balance. Im am still able to train hard and I think that is what is getting me through this, although there was a time when I couldn't even bend over without feeling so dizzy and off balance it was not funny. But Im getting better and thats all that matters, stay positive everyone..

DC

Hi everyone,

I am going for my first appointment of cranial sacral therapy it is suppose to be effective in helping people with inner ear disorders it was highly recommended...I looked around in Vancouver and found a place that speacializes in this and they said they deal with many cases of people with labyrinthitis and have really helped alot of people...I will keep everybody updated hopefully it helps . Reading previous posts it did seem to help one lady named Lisa going onto my fifth month staying positve trying to enjoy each moment this virus really taught me how precious life is...

Hi everyone,

Jemma, don't get disheartened - you will feel really good and then it will hit again like a bolt out of the blue. It's like one step forward and two steps backwards! This is so frustrating and it does make you feel so upset so don't worry about the crying!! I've cried plenty of tears over this stuff over the last few years but you just have to dust yourself down and start again!

Always remember that what you have is not life threatening and though it does totally control your life at least you still have a life! I think of all the people that are so much worse off then me when I am feeling down and you know it's not that bad. I have lost my job because of it but there is still plenty that I can do! And, that's what you have to focus on - what you can do, not what you can't do!

Keep fighting - keep positive - keep smiling.

Brett - I took tramadol a couple of weeks ago when I did my back in. I only took two and they knocked me for six! Don't know how you can take that stuff - it is so strong. I vomited for hours and will never touch them again! Give me paracetamol any day! Anyway, you are right in that certain medications can cause inner ear problems but I'm not sure if that one would. You would have to do a bit of research on that one!

As regards you actually feeling worse, this is normal with Labs - I started off with the dizziness/vertigo and the balance problems didn't kick in until a couple of months later and the anxiety followed that. As you go on with Labs (if indeed you do go on with it - hopefully you will be fine), you will find that there are many different symptoms which don't all hit at the same time! My last relapse consisted of constant spinning vertigo which I had never really suffered much before so it is a very strange condition. Why don't you have a look at the website www.labyrinthitis.org.uk for which you will find the link at the top right hand side of this page - all the different symptoms are listed there and it is a really good site. Have a look at the guestbook and read everyone's stories!

Brett, I am so sad that your parents and your girlfriend don't understand what is going on with you. The problem is that you actually probably look ok and they can't see that you are suffering. Get them to have a look at the website with you and they will begin to understand what you are going through. This is one hell of a horrible thing to experience and you really do need support from someone.

Please don't lose sight of the fact that you will probably recover from this soon and keep up that walking because it really is helping you. Have you tried the VRT exercises - they can also be downloaded from the internet?

Natasha - this therapy seems very interesting but sounds a little scary. What does it consist of - keep us posted on that one.

Take care everyone.

Sandie xx

I am desperate for answers. I came down with Labyrinthitis just over three weeks ago. A week and a half ago I began to see a dramatic improvement in the unsteady being on a ship feeling. Right when that started to subside I began having terrible sleep problems. Twitches all over and terrible sleep starts with whole body contractions, gasping for breath, a sort of pulsating headache and waking up with my eyes and arms in a tremor (everything appears shaky for about 30 seconds after waking.) I can't seem to make it through more than one sleep cycle at a time when I am lucky enough to fall asleep and then the process begins again with the sleep starts and jerks. I have googled and googled for answers. I live in Canada and am simply not getting anywhere with my doctor as of yet. I actually went to the ER last week because of a profound lack of sleep caused by these things. They pretty much patted me on the head and made me feel like a jackass for going to the ER. I am crying myself to sleep a lot and waking up crying because of these things. I just want to be the normal person I was before.

Has anyone else had these kinds of profound sleep issues caused by their labyrinthitis or is it possible that I actually have had something else from the beginning? It's beginning to feel like it will never end and it's making me and my husband miserable at night. And I'm not the fun mom that I used to be.

Nan in Can, I also had the sleep problems, I would also wake and have full body tremors as well, it seems to come with this condition. Get some magnesium it relaxes the muscles and nervous system, generally you take it before bed for a deeper sleep...

On a side note I have now come down with a flu just as I felt as close to normal as I ever have, I just can't believe my luck, so far it hasn't really made me worse but I feel a little unsteady... Im hoping and praying it does not get worse again..

DC

Hi Nan

When I first got Labs I would have a problem where I would be falling asleep, you know when you are in that comfortable phase just before sleep hits?. Then I would wake up with a start and I wouldn't be able to swallow. This was really scary. It could happen many times in the same night. I didn't have body tremors or anything like that but I think it was possibly linked to the anxiety part of Labs. DC is right in that you should maybe take some magnesium and ever since I first fell ill I have made sure I get all the necessary vitamins etc that my body needs.

Take care

Sandie x

Brett, sorry you are feeling so awful. It is hard for anyone not experiencing these symptoms to understand. Getting out for 10 minute walks is very courageous. I don't think the medicine messed with your ears, most likely the infection.

I have been greatly relieved reading about other people's anxiety symptoms. At least I know now FOR SURE that the Labs set off my bad anxiety. The doctors all assumed that I was just crazy. The tremors in the middle of the night, getting only two hours of sleep at night, tingly feelings, waking up sweating and anxious, this started at two months just as I was starting to feel well. Nan in Can, glad you went to the ER. I also had to get something so I could sleep. Yes the symptoms can change on you after a few weeks/months.

Just had a week holiday and it went great. Somedays I feel 98% recovered (and I am only at 5 months), then other days I go for a walk and feel like a drunk.

One last comment for Jeffrey K. I get that vasovagal stuff sometimes too, but have never passed out. Some reading I did said that anxiety can cause a paradoxical effect and lower your heart rate when you recline. I have had a few episodes of this, starting when I got Labs, never really before. Not sure if this is at all related to your situation, but I wouldn't be surprised if the vestibular system being out of whack caused this, it affects so much, like everyone said. I had bad memory problems the first couple weeks too but they have improved somewhat.

I recently read an excellent book - it won't solve anyone's problems but it details just how IMPORTANT and DISREGARDED our SIXTH sense, BALANCE is. It is called "Balance: In Search of the Lost Sense" by Scott McCredie. If you can find it at your library, please check it out. He also discusses the memory problems that persons with vestibular disorders can have and how no one really understands it....but we sufferers know it is real....

I got Labs from the VARICELLA immunization that i was required to get in order to keep my job at my doctors office. I tried to tell them I had the chicken pox when i was 8... but I couldn't prove it. Ironically, my doctor is an amazing, MD, ND, and Acupuncturist. She treated me for three days in a row with SCALP ACUPUNCTURE and it got rid of 80% of my symptoms and all of the dizzyness!

I suffered for two weeks with severe symptoms, 2 trip to ER, (ct,blood work, ear wash, urine, ekg, rhythym strip) ... and then I got the 3 acupuncture treatments. Those first few weeks I had the whole dizzy, confusion, extreme fatigue, low blood pressure, strange eye movements (i could hear my eyes move...another weird effect)

But after the acupuncture the most severe symptoms were gone. Now I'm left with random episodes of fatigue, fear, concentration lulls, some headaches and eye pain. After reading through this i'm going to get gingko tomorrow and schedule cranial sacral therapy sessions... as I think one of the other docs does that here.

I also had a reiki session and talked to a therapist about clearing chakra energy, which I strongly feel helped a lot too... if anyone's interested in that part, just ask.

It's sort of bittersweet to find this site. Reading all these posts... I FINALLY feel as if someone understands. I'm not alone. On the other hand, all this reading does two things...it's hard on my eyes and concentration after a bit... and it adds a lot of other symptoms to fear that i hadn't even thought of. I know that fear and anxiety are playing a role in the remaining symptoms i have... it helps to read the posts of those who have survived it. So i'm writing to tell mine... I feel as though i'm almost through it... because of the acupuncture mostly. I feel very lucky. Very very lucky.

Hi All,

Some time since I posted and it's been almost a year now since the onset so I felt time for an update;

First of all reading back a few posts I haven't had any sleep problems, as a matter of fact it seems to be the only part of my life right now that is normal.

My "bobble head" symptoms have stayed vitually unchanged over the long term and don't really change much from day to day. I've tried all the herbal remedies and vitamins recommended on this site and haven't seen any change. I have been seeing Dr. Epley in Portland since the onset and have tried several different treatments including a metered profusion into the inner ear with a steroid which again hasn't made any difference. I've been on beta serc for about 3 months now, also without any measured affect good or bad....wondering if we're not "barking up the wrong tree."

Sad news is that Dr. Epley suffered a stroke and will be closing his research clinic which is a heart breaker because Dr. Epley and his staff are the greatest folks and really understand what we are going through.

I've been back at work now for 6 months and even though parts of my job are a struggle I've been able to work through them. I have not been back in a small airplane since the onset and while I feel I could safely fly I don't want to risk it. I have started back racing vintage motocross but really slowed down and fall a lot but at least I'm out hanging with my friends and not letting this POS disease ruin my life.

Since last September I've met 2 people who had labs, one for 18 months and the other for 26 months, both woke up one day and the symptoms were gone so don't ever give up.

Fritz

Hi everyone. Coming into week 5 on Thursday but anyways just wondering about some symptoms I'm having. Whenever I move my eyes in certai. Direction sometimes I feel a sharp tingle threw my body like I'm going down a roller coaster like if I look away at something boom I get a sharp tingle like I said idk what the deal that is. Also wondeing if maybe playing video games like a football game could help with all of this bc concentrating at a ball on the screen or something? With this illness I guess anything g is possible to help or not help haha. I'm seeing a neurologist September 9th so I will see how I goes. Had MRI it was clear. Ent doesn't seem to take my symptoms serisouly and said give it a week well it's almost been 5 so hope neurologist is more helpful. I've never had any labs test done so I think this is what I have since I have all these crazy symptoms but there 24/7 and really affecting my life bc I can't really do anything at this point but trying to stay positive like all of you. Been shooti g some hoops and playing catch with baseball last couple days. Forcing my self to do things in hope my brain Leans faster. Only way I can think I got this is I had a ear polypt in my ear and a infection went untreated for over a year the ent said so I think I must have tons of damage but antibiotic cleared infection. Well let me know about that eye thing if anyone else gets that thanks everyone will keep posting as each week passses take care

KC, DC and Sandie, thank you so much. It's so comforting to know these sleep things are not just me! How long did the crazy sleep issues last for you? Did they eventually fade on their own? Did you have to take meds? I started taking magnesium two nights ago. I'm guessing it needs to start building up before it really helps... Thanks so much!!

Nan, I think it took me around 4-8 weeks for all the weird sleep things to stop, but with me one symptom would subside then another would start, thats what is so draining about labs.. But another thing I done was acupuncture and massage 2 times a week for about 6 months now, its been expensive but I feel better every week and have started to have days of feeling almost normal. On top of the magnesium I also took Gingko and a multivitamin, another thing I really felt that helped me was exercise, it took me about 8 weeks to start exercising but it did make me feel better..

DC

Thank you so much DC. I'm up here at 2 in the morning, crying my eyes out. My husband seems mad at me every night because he thinks I'm fighting sleep or the sleeping pill that I was prescribed that isn't working worth a bean. I just want this to go away. I'm getting so discouraged and depressed. Thank you for your encouraging words.

Hi everyone

I too am so discouraged at the moment. Over the l