Sharp Blue: Labyrinthitis comments, page 3

I'm still amazed that my entry, "Labyrinthitis; or The Missing Week", has spawned something of a support group. The community that has built up around it has now posted hundreds of comments. Indeed, I'm starting to think that it might be a better idea to set up a second weblog solely to host this community and to give some of the regular posters editorial rights on it. For now, though, I'm just setting up a third page of comments.

1. Comment by Mary on February 6, 2005 11:26 PM permalink

Rich -- Thanks for continuing the site for now -- I would have been a complete mess mentally without it. We all know that you did not intend for it to be a weblog -- thanks for making the effort to keep it going for now. I do think that it is a good idea to set up a separate site -- I don't have the skills to do that but maybe someone else does.

Nikki -- I have many of the same sypmtoms as you described as you began to recover from labs -- watching things that move (tv, cars, people, etc) makes all of my symptoms worse. I also figured out that anything that requires a lot of moving up and down or turning around a lot also is a problem -- such as cooking for a long period of time (the big meals that I tried to cook during the holidays really screwed me up) or cleaning. Bright lights, the sun, etc. are a problem, too, -- sunglasses help a lot. Earplugs have helped me considerably -- noises are a major problem (even minor noise).

Kate -- I can completely relate to your situation with your son -- I have two young girls and feel so pathetic as it has been so difficult to take them out -- even picking them up at school has been a problem with the hall noise, bright lights, etc. They also have to help me on walks and in the store -- I feel like their elderly grandma. I think that having young kids when you have a long-term problem like labs makes you feel even more vulnerable!

Overall I am feeling better over the last two weeks. I went and saw my internist last week to have her review all of the tests that were done in Sept./Oct. to make sure that nothing was missed. She was very sympathetic and thought that everything very serious had been ruled out. My MRI in Sept. showed sinisitus and fluid in my right ear (funny how my ENT never told me that my MRI showed fluid in my right ear!). She prescribed an antibiotic for the sinisitus as she thought that it might be prolonging my recovery from labs. She also gave me a steriod nose spray. We'll see if any of it helps.

I also wanted to mention something to all the women out there (sorry guys!) -- my symptoms become much more severe when I have my period (a few days before and during). I mentioned this to my internist and she thought it was due to the increased fluid retention that happens when you get your period. Anyway, if this happens to any of you -- you are not going crazy -- there is a logical explanation for it. I also know that Emma mentioned this problem on her website.

Sorry to go on for so long -- hang in there everyone! Mary

2. Comment by mary on February 8, 2005 9:45 AM permalink

It's me again -- after feeling much better for almost two weeks -- I am feeling awful at 1:30 am. I woke up and immediately felt horrible -- my arm had fallen asleep, my stomach felt bad, my head felt bizarre, my whole body felt completely strange -- like something was wrong with my body chemistry -- I also felt like I was going to float away if I went back to sleep. Then I started to panic which didn't help. I don't know if it was something I ate or if I'm coming down with something else. It also happened to me earlier in the day.

Can anyone relate to this feeling throughout your entire body? It's hard to describe.

I can't believe that this horrible illness causes such bizarre symptoms -- just when I was feeling so much better.

Mary

3. Comment by Anna on February 8, 2005 9:26 PM permalink

Hi, everybody,

Mary, this illness does produce the strangest and the weirdest sensations in your whole body, not only in the head. While I am absolutely sure, that I am slo-o-oly recovering from my worst bout of labs, I still have from time to time that strange feeling of numbness in my arms. Often my feet are cold like ice while my head is "on fire". I put a heater on my feet, and a cold pack to my forehead. I start shaking and trembling, feel nauseated and exhausted. And at the same time - no real vertigo! Just this floating away sensation. I am not panicking any more of all this - I experienced it many times before during recurrences of the inner ear disorder. It is extremely hard to explain it to anybody, and most of all – to my loving and beloved husband. He thinks, that I am too nervous and exaggerating, that I am hypochondriac and overly concerned about my illness. He says, that my symptoms up to 70% are produced by anxiety. At least, he gives 30% to my inner ear disorder.

Keep your chin up, everybody.

Anna

4. Comment by Mary on February 8, 2005 11:12 PM permalink

Thanks so much, Anna. I really needed some support -- I felt so bad last night and still do today although for some reason everything is easier to take when it's not the middle of the night. I think that I may have a flu bug on top of a resurgence of inner ear stuff. Have you ever felt like you may have a high blood pressure problem? Sometimes I wonder if part of the bad feeling throughout my body is an increase in blood pressure. My doctor didn't seem to be concerned about it last week so I guess that I shouldn't worry.

My husband thinks that I am too nervous about everything too -- last night I asked him if I was going to drop dead -- I was only slightly kidding! :) But honestly these symptoms are the absolute worst -- I know that none of it is in my head especially b/c I've never been a hypochondriac about anything else in my life. When you feel horrible, you feel horrible -- it is not in our heads! No one else can understand them unless they have had a vestibular problem themselves.

Anyway -- I will keep my chin up and you and everyone else do the same.

Thanks again -- Mary

5. Comment by lynn on February 9, 2005 8:38 PM permalink

I have just sat and read all of your comments,and thank god that at last there is some one out there that understands !! I have suffered from labs for the past 3 years on and off. This last bout has last for 2 weeks so far, the kids think I'm grumpy, my husband thinks i'm a hypochondriac and my boss is getting fed up of me. Thank god for the internet ! I'll be trying everything all of you have suggested, because i really feel awful. I have read that the longer you have it the easier it gets, but i certainly don't feel this way. I'm on my way back to the doctor tommorrow, more stemitil probably.

6. Comment by Carol on February 10, 2005 4:21 AM permalink

Hi to all, in response to Anna's question, the doctor who treats inner ear problems is Dr. John Epley, Portland Otologic Clinic. He has a web site with valuable information. epleyclinic.com I sat next to a lady in the waiting room who had suffered horribly from VL and she said Dr. Epley helped her as she is back to 100% normal. I hope that my husband can get the same results. I will keep you posted. Carol

7. Comment by Anna on February 10, 2005 4:29 PM permalink

Dr. Epley is known for his the famous Epley manouver - replacement of ear rocks in BPPV patients. The manouver works different for different people, but it helps many of them. I just did not know, that Dr. Epley also suggests other treatments, like what Carol�s husband is going to have. I will definitely search for all the information about this on the Internet.

Anna

8. Comment by mary on February 10, 2005 7:55 PM permalink

Carol -- Thank you so much for telling us about your husband's doctor -- I can't believe that it is the same doctor who came up with the Epley manuever. I am only three hours away from Portland -- I called his office today and may go see him if my symptoms do not clear up soon. The woman I spoke with said that I needed to see an otologist since they have special knowledge/training of the inner ear. I am so angry that none of the doctors that I have seen referred me to one.

One thing very interesting on Dr. Epley's website was how sometimes anti-viral drugs are given for labyrinthitis -- has anyone taken these?

Mary

9. Comment by Em on February 11, 2005 2:49 PM permalink

Hi Mary - yes anti virals can be given for labyrinthitis as can steroids such as prednisone. They are not given out much in the UK - noone mentioned them to me when I got ill - but I think more widely used in USA. They are only potentially useful within the first couple of weeks of the onset of labs.

xxx

10. Comment by Robin on February 11, 2005 4:42 PM permalink

Hi Everyone,

I think I am recovered after 6-7 months of Labs. I had a bad cold last week and I was worried about some of the lab symtoms reoccuring, but, I seem to be fine. As a 50ish woman I am going through many normal "changes". There are alot of overlapping symtoms of labs and menopause. Most important though is I'm feeling good and like my old self again. Perhaps I should have a teashirt made that says " I survived and recovered from Labs".

I hate to admit this, but it's true. It takes time for our bodies to overcome a virus, and this one is really a challenge.

Everyone, good luch and keep your chins up.

Robin

11. Comment by Anna on February 11, 2005 5:36 PM permalink

Hi, everyone,

Robin - you've made rather good recovery time! I absolutely love your idea about the teashirt that says " I survived and recovered from Labs".

I have some thoughts about anti-viral drugs, I will post later tonight.

Anna

12. Comment by mary on February 12, 2005 3:50 AM permalink

Thanks for the reply, Emma.

Here's a question for anyone out there:

It seems that with most viral illnesses there is a pretty standard recovery process -- you feel bad and then slowly (or quickly) you begin to feel better each day until fully recovered with few, if any, setbacks. If you think of it in terms of a graph, the graph line would steadily move upward until you are fully healthy.

Why is this illness so different? As I've mentioned before, I have had days (the last was a full week) where I thought that I was about 85% recovered only to wake up the next day and be back at 40-50%. Does this type of roller coaster ride with all of the symptoms signal that maybe it is not viral labs but a different type of inner ear disorder?????

Mary

13. Comment by Anna on February 14, 2005 2:23 AM permalink

Hi,everyone,

Mary is right - this illness is a roller coaster.

My understanding of it is the following. A virus is active only in the beginning on this illness. As time goes on, the virus is not active any more, because your body gets over it. But the damage to your vestibular system is already done. Here recovery begins, with ups and downs, because everything effects your vestibular system: weather changes, your body overall health changes, how much rest and sleep you have, hormone fluctuations, eating on time, noises, etc. (you can continue this list yourself). I know a guy in New York, who had a surgery for removing a benign tumor from his acoustic nerve (acoustic and vestibular nerves run extremely close to each other). He had the same pattern of recovery as all of us, labbys, do (same vestibular symptoms, and ups, downs, ups, downs). His vestibular system was damaged first by the tumor, and second - by the sugery. He has made full recovery, by the way.

Anna

14. Comment by Kay on February 14, 2005 2:41 PM permalink

[ women only section] Mary, I too have noticed that my symptoms seem to get worse when I am on my period but I have read through the comments on this sight and I dont think anyone else has mentioned it. I am relieved you said this as after feeling steadily better for the past few weeks I was worried that I was going downhill again.

I am now back at work after taking over 2 months off due to LABS. I am still only a shadow of my former self. I will do anything to get out of leaving the house. Infact the only places I go are work which is a few minutes away on foot and to the local shops. My family have been kindly doing my food shopping for me and I done most of my xmas shopping over the internet I know I am not doing mysef any favours but I feel giddy now even thinking about a crowded shopping centre or even having to queue to pay in a shop. It seems that when I'm panicking about these things happening they actually do begin to - has anyone else experienced this?

Nikki, be interested to hear how you are doing and if you are able to get out any more confidently than last time.

Arranged my first outing to a local theatre on Thursday and determined that i am going to take my 2 children there myself. If I am at home on the sofa I feel ok so I am going to try thinking that to myself - after all I'll be doing the same thind only somewhere else. I also find that apart from the gingko, chewing gum seems to help.Also I read that in moments of panic touching the roof of your mouth with your tongue quickly is supposed to help [obviously keep your lips together as you may look pretty strange doing this]. Good luck to you all and I look forward to hearing your success stories soon.

15. Comment by Emily on February 14, 2005 9:42 PM permalink

Hello,

I have posted but infrequently. I have had this horror for about 7 months now. From the onset I was put on Meclizine which is an antihistimine. That knocked me out so I was therefor switched to Allegra a lot less powerful but could manage. I have figured that it is time to get off the allegra. I am still dizzy but one of the side effects of the allegra is dizzinesss/fagigue and back pain. Some of the problems I have been having. This is just a test to see if getting the meds out of the system for a bit help me to not only feel better but finally FORCE yes force my brain to just deal with this and not use the allegra to cover it up enough for me to not fully conpensate. I will let you all know if this helps in any way shape or form.. I am tire of being tired. Went to a job with my boyfriend (he is a DJ part time) he could not leave to take me home, we were an hour away from his house so a taxi would be to expensive so I sent 1/2 of the evening sleeping in the car. Thank gosh he has a decent car for sleeping in. Am tired....so tired of this.

Emily

16. Comment by Laurie on February 14, 2005 11:54 PM permalink

Hi everyone, I too have suffered from Labyrinthitis. Just a quick question, I started feeling better in decemeber, but now I have sinusitis and I'm sooooo afriad that I'm going back to square one with the labs....is this possible? Do I have to worry evertime I get sick now?? Also has anyone found that after sleeping all night your symptoms are worse in the morning?? I sooooooo appreicate any feed back

Laurie

17. Comment by Bruno on February 15, 2005 1:51 AM permalink

I have posted to this site on several occasions. I got Labyrinthitis back on Oct 8th, back then I was not doing very well but I am doing MUCH better today! I've even returned to work. And I have some advice based on my experiences with this thing...

I URGE YOU, THAT IF YOU HAVE BEEN SUFFERING FROM LABYRINTHITIS FOR LONGER THAN 8 WEEKS TO SEEK MEDICAL ATTENTION!

If you are not 100% comfident, or if you do not have complete trust in the doctor you are seeing, or if the doctor is doing nothing to treat your symptoms, then get a second opinion, or a third, or a fourth, what ever it takes! It was only after seeing a third doctor that I was diagnosed as suffering from severe depression! Depression is very hard for a G.P. to recognise. I know! I couldn't believe that's what it was either, but now after only 4 weeks of medication and adult-councelling I am feeling normal again! I'm smiling, laughing, running, bicycling...and it's -14 degrees outside!

Good Luck, Get Well

Bruno

18. Comment by Laurie on February 15, 2005 2:13 AM permalink

Bruno,

I hope you come back :) Were you suffering from depression all along?? was this the cause of some of your dizziness?? I'm extrememy depressed, so any feed back would be great

Laurie

19. Comment by Anna on February 15, 2005 4:22 PM permalink

Hi, friends

None of us are crazy!!! This is what our illness does to our minds. It is definitely impossible to avoid fears, panic attacks, anxiety and depression with this “dizzy monster” which attacks you so severely. The longer your illness lasts, and the more severe your symptoms are – the more chances to get all these really unpleasant psychiatric symptoms.

I am a very happy, active, accomplished, outgoing person with a loving family, lots of friends, very interesting and demanding job - in between the bouts of labs. I am a completely different creature during the bouts – total wreck physically and emotionally. I take antidepressants during the worst times of my bouts – nothing to be ashamed of !!!!! It helps our minds and bodies to get through the horrible symptoms of this illness.

Bruno, I agree, that you have to find the right doctor who would point out and treat your emotional state. Unfortunately, doctors can not treat the real cause of our depression - our ailing inner ears. But definitely, trying to improve your emotional health - is already a big step towards your recovery. By the way, this site, or other similar support groups, is the best "cognitive behavioral therapy" or "adult-councelling" fighting fears, anxiety and depression maybe even better, than medication.

Good luck to everybody.

Anna

20. Comment by Kay on February 16, 2005 5:54 PM permalink

Anna, Just wanted to acknowledge you. I have read your comments throughout these pages and have found them really helpful when I have been going through difficult stages of this horrible illness. You sadly seem to know this illness all too well and what I and others are going through. Are you all able to carry on with your jobs etc when you have LABS as mine was so severe I literally couldn't leave the house. Finding it really hard to get back out and about as a result. Anyone offer any advice? Keep your chins up!

Kay

21. Comment by Laurie on February 16, 2005 6:54 PM permalink

Just a quick question....how long about Labs did you suffer the Anxiety and Mostly the depression??? You guys are alll soooo great :)

Laurie

22. Comment by Anna on February 17, 2005 11:42 PM permalink

Hi, everybody,

Laurie, Kay, I think , that everybody is different with anxiety and depression, but it hits almost everybody with this illness. As for me, I push myself, trying to go out to stores, or small parties from time to time. But not often. I keep all my strength for working as an engineer and researcher 8 hours a day, I feel exhausted after work.

Kay, - do not blame yourself for not being able to leave the house. You are not ready for this yet. I was in your situation for 6 months in 2004. And look - I am doing much better now! I ordered the newest book "Consumer handbook on dizziness and vertigo at Amazon.com" to be published in the end of February. I expect many helpful advices on coping with my illness. Great website - labyrinthitis.org.uk. Have a look at it.

Do not give up!

Hugs, Anna

23. Comment by Laurie on February 18, 2005 7:18 AM permalink

Hi everyone,

Just a little something I've nocticed. the dizziness and and unsteady feeling has pretty much gone, but I have noticed when I wake from sleeping on my back....Oh Boy not a good feeling!!! Can anyone relate???

Laurie

24. Comment by Laurie on February 18, 2005 4:32 PM permalink

Does this anxiety, fear and depression ever gooooo away???

Laurie

25. Comment by mary on February 18, 2005 5:53 PM permalink

Hi everyone:

Laurie - when I wake up in the morning, I usually do not feel at all well -- it's sort of like I just spent a night sleeping on a boat at sea -- upset stomach, etc. During the very worst of this, I can only sleep on my back with my head elevated -- it feels like the wild spins are going to come back if I sleep in any other position.

In re to anxiety, fear, depression, I have felt all of these things b/c who wouldn't after feeling so horrible for months. I think that it is a completely logical emotional response to feeling so sick for so long with no effective treatment.

However, about three weeks ago, I had a week and a half where my body swaying/dizziness/stomach upset/brain fog/etc. was much, much better -- during this period my emotional state almost returned to normal -- I still felt a little anxious about having another episode of severe brain fog/lightheadedness but other than that it was a huge difference. So I think that once the physical symptoms let up, one's emotional state drastically improves.

Unfortunately, all of my symptoms have returned for some reason and returned with almost the same intensity as in the beginning (but without any true vertigo spins).

Let's all hang in there -- stay strong!

Mary

26. Comment by Anna on February 18, 2005 7:43 PM permalink

Hi, everybody,

Laurie - calm down!! You said - "the dizziness and and unsteady feeling has pretty much gone". This is the most important thing!!! Your mood will improve and the anxiety will be gone as you stay longer in normal, or close to normal state. Read Mary's previous post - I agree with every word of hers.

Mary - you said, that you had a really good week, but now you again have all the symptoms "but without any true vertigo spins". The absence of virtigo spins is also a positive sighn! You are still going towards recovery with high "ups" and low "downs". But the tendency it still slow-slow better and better.

Anna

27. Comment by laurie on February 18, 2005 8:44 PM permalink

Thankyou Anna :) I'm soooooo glad I found you all. I was truly beginning to think I was cracking up :)

Laurie

28. Comment by Emily on February 18, 2005 9:03 PM permalink

Hello,

It has been almost one week off of my medicines. I am actually doing better without them than with. I still am dizzy but a LOT less tired. And I acutally seem to have long moments where I am completely dizzy free.

I am wondering if my bran which was groged down by the meds before I stoped is now Forcing itself to deal with the damage. Not ignore it. I am hopeing that within the month I will be better most of the time.

I will keep you all posted. I am aware that this is my experience and I am not recomending someone get off there meds unelss they and there doctors are comphortable with this decision. Oh and there are moments when I am a bit worse but it seems to me that after the small spell of worse my brain is kicking in and I have a large time of better. Thanks.

Emily

29. Comment by Kate Ash on February 19, 2005 1:21 AM permalink

Hi all,

Well , latest bout is passing, but still have have positional problems. Every time I look down or turn my head, whoa! I am so amazed, I walked into a meeting the week before last, holding onto chairs, and was recognised immediatley by another dizzy! She looked at me and said, 'oh, you 've got V.L.' She had it for a year, and was hospitalised with it twice. She recommended 'Pulsitilla', and I am going for that now too! The worse thing is that this latest bout has knackered my confidence. I cannot agree to go to any social gathering, or away on holiday, or anywhere. I am still pretty stuck to the house. Infact my (perception) of life outside these four walls is hell! Took last week off work for half term. Going back to work next week. Wish me luck, I only get 7 weeks hol per year, and I can only lie for so long.........

Best Wishes,

Kate

30. Comment by Nikki on February 19, 2005 8:01 AM permalink

re. anxiety.

The thing that remains with me the most from all this is anxiety.

Although I feel pretty well most of the time, I still get anxious several times a day.

For example, (and I've mentioned this before)if I feel a bit dizzy/unbalanced for any reason, and it may be somehting as simple as walking onto an uneven floor, I feel the familiar fear feeling creeping into my chest. I do a lot of "self-talk". I say to myself: "Its only an uneven surface, its not dizziness, its ok, its perfectly normal".

If I feel a bit tired, or off-colour, or yes, if I am menstruating, I start to feel a bit dizzy and anxious. So it is also linked to a feeling of physical well-being. Its hard to tell if the dizziness is the remainder of the BPPV/labs/ whatever-it-was, or whether its purely anxiety, or partly from other physical reason as simple as some kind of allergy. After all, the neurologist did say there was no physical inner ear reason for me to still feel dizzy. Also, if I am reading about dizziness or thinking about it - I start to feel dizzy.

I am now unable to remember or distinguish what I felt like before this happened. E.g. this morning I bent over to pet the puppy and felt light-headed, then afraid. Quite possibly this action, before I had BPPV, would have given me the same lightheaded feeling, but now of course its all amplified by my being super-aware of it.

I do go places but of course without the same confidence (or rather the obliviousness of the healthy) as I used to. I always think: what if I get an attack if I go to this or that place? What if I cant get home, what if, what if, what if? I then have to self talk "ok I have my stemetil, I have my mobile phone and I can call a taxi". If I'm not doing the "what if" thing and concentrating on something else, I am fine. But usually I stick to familar places, or go with someone. As Kate said its "...knackered my confidence". I also think twice about social occasions, holidays, etc. I fear that work might fly me away on a job and I will get sick again and be alone and unable to return.

I think that the scariest thing about the possiblity of the BPPV/etc. returning is the fear and anxiety that goes with it. At the moment I feel that if it returned in the near future, I would still be too emotionally fragile to deal with it and I would crack up. I fear the fear.

Having said all that, before this all happened I was quite an anxious person who worried excessively and always was thinking of "what ifs", so this has really tipped the scales. I've tried doing yoga and relaxation tapes but am thinking of going to see a phsychologist anyway. I'm sure most people would probably be able to pull themselves togetehr a bit easier than a habitual chronic worrier so i wouldnt think that other people would have it forever.

Anyway, on the whole life is almost normal. I go to work and go to the gym and do most everything. So cheer up! Sorry if this sounds so negative because mostly my quality of life is excellent.

31. Comment by Laurie on February 19, 2005 10:52 AM permalink

Oh Nikki you sound just like me...... I have always been a person who has delt with anxiety, but now its is 10 fold!!! I suffered from Labyrinthitis to which I believe is pretty much gone, but I think I now get the phycholocail ( soory cant speel) dizziness. I'm left feeling anxious and depressed. I what if, what if EVERYTHING to the point where I don't want to leave my house!!! this whole labyrinthitis has put my anxiety through the roof!!! would love to chat with you sometime :) maybe together we can figure this fear and anxiety out!

Laurie

32. Comment by laurie on February 19, 2005 12:24 PM permalink

P.S. My Doctor gave me Xanax (anti anxiety meds) also which really seems to help calm me down. Anyone else have their doctor talked to them about the anxiety from this and given meds for it? :)

33. Comment by Em on February 21, 2005 1:47 PM permalink

Hi all - been away for a week but just read all comments. So gld bruno is better tho wonder if the depression was simply holding you back frm recovery from labs - you dont normally get inner ear type dizziness with depression. Often anti depressants can help a labs patient to recover because "compensation" needs serotonin to work.

Agree with anna's descritpion about the up and down nature of this and the fact that after a few weeks the prob is no longer viral.

CBT = very helpful. Am having it. I got mild depression probs about a year into this. Nothing severe tho and am better than I was. I cope pretty well.

Hugs to all xxx

34. Comment by mary on February 21, 2005 5:13 PM permalink

Hi everyone:

Emma -- I have a couple of questions: it seems like you are very well-educated in re to the specifics of inner ear problems -- where did you get your info???

Also -- can you explain what you mean by "compensation needs serotonin to work"? Does that mean that exercising may help (isn't serotonin what is produced by your body when you exercise)? What is "CBT" - cranial therapy?

Interesting that you mention that depression does not normally cause inner ear-type dizziness -- I saw my internist last week for a physical --I'm sitting there looking sick and pathetic and sounding pathetic and she started asking me about feeling depressed. I know that my illness is not caused by depression although it is certainly "depressing" to feel horrible for so long and not be able to live a "normal" active life.

By the way, wouldn't it be nice to see doctors who had actually experienced these type of symptoms themselves? Trying to explain the intense brain fog is difficult -- doctors look at you as if they have no idea what you are talking about!

Hang in there all -- Mary

35. Comment by on February 21, 2005 10:15 PM permalink

Hi Mary.

Have got my info from having this for 2 years and lots of internet and book research...

The serotonin theory is just a theory. They think depression/anxiety certainly hinders compensation.

Your doctor was prob meaning do you feel depressed as a result of this disorder - which is v common.

CBT = Cognitive Behaviour Therapy. It is mentioned on my website quite a lot.

xxx

36. Comment by Anna on February 21, 2005 11:06 PM permalink

Hi, everybody,

CBT = Cognitive Behaviour Therapy. I am sure it is very good for getting your confidence back - for all types of people - "anxiety" type and "non-anxiety". I am normally a non-fretter. I never worry about little things, even "big" things like money, or public appearence, or thinking "what people think of me". I am a confident type of person, (hope, that not arrogant, or boaster). But anxiety from dizzyness does affect me, especially due to recurrent type of my illness and its long term. So, I am actively in support of taking anti-depressants and getting CBT (if it is possible in your area).

Emma - "The serotonin theory is just a theory. They think depression/anxiety certainly hinders compensation" I have big doubts about it. No facts to support the theory.

Anna

37. Comment by mary on February 22, 2005 7:13 PM permalink

Thanks, Emma and Anna. Emma -- I can't believe that you have been dealing with this for two years at such a young age -- it seems like you have handled it very, very well which means that you are an especially strong person -- remind yourself of that when things become especially hard.

By the way, I have spoken with someone in Dr. Epley's office a few times -- it was great to speak with someone who actually understands vestibular problems. She said that brain fog and mental processing problems were very, very common (the symptom that has always concerned me the most). More than once, she said, "I want you to know that you are not going crazy." I loved hearing that from someone with experience!

She also explained the body swaying that I have when my eyes are closed and I am standing up -- she said this happens b/c my eyes are now balancing my body (not my vestibular system) -- so whem my eyes are closed, I lose my balance since there is no focus point for my eyes. And this causes extra fatigue b/c my eyes/brain are working so hard to keep my body upright. Pretty simple explanations but again good to hear from someone associated with Dr. Epley.

Also, she said that one reason stores, driving, etc. are problematic is b/c of movement in your peripheral vision -- this can cause the increased dizziness/lightedness/spaciness when in supermarkets, etc.

Based on what I told her so far, she thought it could be any of the following: an irritable lesion left from a virus, chronic labyrinthitis, or a fistula (although she said that only 10-15% of people in these situations have fistulas). She also didn't rule anything else out b/c she said that one episode or symptom can change the whole diagnosis (and I haven't given her a complete history yet) -- that is why they spend a long time getting each patient's history b/4 coming to see them.

Anyway -- it takes a least two months to get an appt. with him and then you have to commit to being in Portland for two weeks b/c he does such extensive testing and analyses. But I am not ruling it out in case these symptoms continue.

Didn't mean to go on so long about that but maybe someone will find that info. helpful.

Hang in there everyone.

Mary

38. Comment by Em on February 22, 2005 8:20 PM permalink

Anna - am only going from what my neuro-otologist has told me and what I have read in her book - That recovery from this can be hindered by anxiety and depression for whatever reason.

xxx

39. Comment by Anna on February 22, 2005 8:27 PM permalink

Hi, everyone,

Mary, thank you for the interesting information about talking with a person at Dr. Epley's clinic. How did you reach her? Just on the phone? Do they consult over the phone?

Anna

40. Comment by Kay on February 23, 2005 10:14 PM permalink

Emily Can identify with you completely. I'm now back at work. I've been taking betahistine since December but have found it makes me feel quite weak and energyless. Stopped taking it about four days ago and afraid the dizziness has returned although not half as bad, thankfully. For me the room is no longer spinning so at least I can leave the house - for me at the moment its a choice between whether i want to stay at home feeling weak with no dizziness or go to work each day with a little dizziness but generally feeling okay. Anyone found Betahistine a little overpowering energywise? Be interested to hear! Kay.

41. Comment by Laurie on February 24, 2005 1:24 AM permalink

Hi everyone, I was hoping if I explained my story I could be given some insight as to this being labs or not. In September of 2004 I had a very bad case of Bronchitis which lasted a good 3 weeks...I had never coughed soooo much in my life. Anyway, 4 weeks later November 1st I was out with my husband and I put my head down to get something from my pruse and when I came back up....whamo!!! I got dizzy, hot and felt sick. I didn't get sick or anything, but I remember feeling funny as we rushed home. We got home and I was walking around okay and them wham it hit me again. My husband said it was a panic attack, because i do suffer from anxiety, but this was something I had never felt before. The rest of the night I was dizzy feeling and scared, but other than that I was okay. The next 2 days I was okay, not dizzy, but very anxious. That thursday I started to where I was dizzy all the time and Friday I had another spell to where I also felt faint.I had about three weeks of 24/7 dizziness. After that I felt very unsteady on my feet, but it was like if I had i bad day I'd have a good night, if I had a good day I'd have a bad night. it was like it would come and go. This went on until the middle of Decemeber. In Decemeber My anxiety went through the roof, but the dizzy unsteady feeling was gone. I still to this day when waking in the morning feel dizzy and unsteady, but once I get myself going I'm okay. I also noticed that sleeping on my back is a big no no because I get a little dizzy feelings. My Doctor says it was Labyrinthitis, but I'm really not sure and its driving me nuts!!! :) I have to admit something here also....I have become OBSESSED with the fear of dizziness! Does any of this sound like labs to you guys and here is the big question......once to start to recover, you can't go back to square one, can you??? I'm sooooo afraid I'm going to get dizzy and it will never go away. I'm wondering if at this point I'm creating my symptoms with the fear. Sorry for the long story, but you guys seem sooooooooo good with all this stuff :) Thanks everyone

Laurie

42. Comment by Mary on February 24, 2005 5:49 PM permalink

Hi all --

Anna, I just called Dr. Epley's clinic directly (the number is on his website). I first talked with the receptionist and then a woman who is the patient scheduler for out-of-town patients called me back. She asked me some questions -- trying, I think, to make sure that I really had a vestibular problem -- and explained the scheduling procedure.

I don't think that they do consultations over the phone -- she was just asking me questions to get a little of my history -- she did explain a few things to me in re to symptoms which I mentioned in my prior post.

She did mention that they see patients from all over the U.S. and other countries. Given your long history with vestibular problems, you may want to look into whether it would be worth the time (two weeks) and expense to visit him.

Hope this helps -- Mary

43. Comment by Anna on February 24, 2005 7:42 PM permalink

Hi, everybody.

I am having a very busy day at work (long meeting and technology discussion with our vice-president). Tired amazingly, but quite happy, that I can do this!!! Laurie - hang on. You said - "I have become OBSESSED with the fear of dizziness!" Not only you - it is in human nature. You are not weaker, than anybody of us. Three-four months ago I was exactly at the point where you are now (fearful!!!) Mary - thank you very much for the information. I will think of a possibility to visit (some day, may be)one of really good doctors. Kay - Betahistine - is it from antihistamine, to fight allergy, drugs?

Everybody, stay strong! We shall overcome...

Anna

44. Comment by Em on February 24, 2005 9:07 PM permalink

Betahistine is SERC - an antihistamine but all vestibular suppressants are. Yes it too made me v zombie like but I onyl too it for 2 days. You prob know this anyway but vestibular suppressants delay not help, the compensation process.

xx

45. Comment by Kay on February 24, 2005 11:09 PM permalink

Thanks Em, could you explain a bit more about what you mean as I am a bit confused ( sorry for sounding a bit dim) !

46. Comment by on February 25, 2005 8:01 PM permalink

Kay - prob best to read my website - see links at top of this page - see the VRT section and it will explain the nature of compensation.

Basically for compensation to happen you need to be active and to provoke dizziness. The medication sedates the system so it does not respond properly - ie: it covers up the dizziness - this hinders compensation as the brian does nt know of the problem in the inner ear.

Best way to recovery = no medication and staying active plus tailored VRT.

Hope this helps xx

47. Comment by Mary on February 26, 2005 3:03 AM permalink

Emma -- Just read the section on VRT on your website -- very interesting -- I should have read that part 6 mos. ago. I saw my ENT last week and he is referring me to a rehabilitation therapist -- first, he is having me go for another test (I forget the name of it). How did VRT help you? I know that I have not been active enough -- maybe that has slowed down my recovery.

By the way, your website is excellent - very informative and well-written.

Mary

48. Comment by Em on February 26, 2005 12:46 PM permalink

Thanks mary - still doing VRt - no real results yet - takes a year or more to show results - am plugging away!

Is the test the dix hallpike? xx

49. Comment by Kay on February 28, 2005 4:25 PM permalink

Hi, would recommend reading above section to all. A friend of mine has been diagnosed with Labs this week. I can't believe the coincidence as I personally had not heard of it until I got it late last year. She was very depressed and worried that she had some more serious illness to do with the brain (like a tumour) so I have printed off the symptoms from Ems site and am going to take them round to show her tomorrow during my lunch hour. I think she thinks I'm just trying to make her feel better when I say that these weird assorted symptoms are all part of this. It was a huge relief to feel that I was past 'that stage' and on the road to recovery although I think it will be quite some time before I feel like myself again if at all!

50. Comment by Mary on March 2, 2005 6:31 PM permalink

Hi everyone:

Emma -- I have a quick question for you. On your website you talk about the "constant internal movement," "spinning in the head - marbles in head" -- has this ever happened to you when you are lying down and on the verge of falling asleep??

I get a very scary feeling sometimes in my head when I am lying down and starting to fall asleep or doze off or when I wake up and then am trying to fall back asleep -- it feels like my brain is going to spin/float out of my head and I am going to lose consciousness if I keep my eyes closed (but the room is not spinning).

Is this anything at all like what you have experienced?? Or anyone else out there?? It happened to me this morning (the first time in a while) -- it is a very bizarre, frightening feeling.

Anna -- I remember you mentioning that it would be nice for the doctors to give us sufferers a written list of the symptoms that we may experience. My ENT never did any such thing and whenever I bring up brain fog, he just attributes it to the general feeling of being sick -- even though I know that it is certainly not the same thing. I'm sure that he would look at me like I was crazy if I mentioned the symptom I described above.

Sorry for the venting -- take care everyone -- Mary

51. Comment by Anna on March 2, 2005 9:19 PM permalink

Hi, friends My long (sorry for that!) message will be dedicated to “working with balance disorder” The following message on this topic I found on one of the websites on the Internet:

“I have good days and bad days, but unfortunately more bad days. I have a headache everyday which ranges from mild to severe throughout the day.

However, work is the only thing that keeps me sane. I don't want to be blunt, but I am the sort of person who needs to be kept occupied with things I'm interested in, or I would prefer not to be alive at all. I struggle, I really hate situations where I have to stand up, or go to meetings or courses, but I do it. I found the main thing that holds me back is the fear of something bad happening while I'm at work - but then I realise, only a few times in my life has vertigo/dizziness ever really put me in an awkward situation - like when I was in high school and had a severe room spinning attack. I got through it, and if anythign like that happens again, I will get through it again. Getting over that fear of something bad happening is what made me realise that I shouldn't ever even entertain notions of quitting work.

Adam”

I am exactly like Adam!

A possibility to go to work, which I like very much (engineering and research), keeps me sane with my recurrent bouts of labs/BPPV/perilymph fistula. I feel accomplished when I do things, which I enjoy (my work, actually!). Like Adam, I have everyday headaches which ranges from mild to severe throughout the day. I hate meetings, lectures, but I have to be there from time to time. I absolutely cannot stand and talk at the same time, so I find a chair, or invite a person to go to a meeting room and to discuss things there. I ware earphones (Bose, Inc. noise- canceling technology) almost all the time, because mechanical equipment, loud voices and any vibrating noises make me dizzy and nauseated. My co-workers are very supportive, and my bosses are good to me, I think, because, I do my work decently (I hope so!).

My message absolutely does not imply, that you should jump on your feet and go to work immediately if you do not feel strong enough to do this. And do not feel like you are “a loser”, if you cannot return back to work right now!!! Everybody's situation is different and unique. It depends on the current status of your inner ear disorder: how you feel, will working 8 hours every day make your worse, how you can handle your kind of job right now. Maybe, it makes sense to wait, and take care of yourself. Remember, that the situation may change to “better” pretty soon, …. or unfortunately to “worse” (if you overestimate your strength and overstress your body and mind).

Mary - frankly speaking, I had very bad experience with ENT doctors in Oklahoma. I am thinking of going some day to Dr. T. Hain in Chicago - he seems to understand the problem of dizziness and all related symptoms. It is so sad, that we know more, than most of the docs.

Good luck, Anna

52. Comment by Em on March 2, 2005 10:33 PM permalink

Mary - I have the feelings I describe on the site constantly - havent experienced the momentary feeling you describe when falling asleept - sorry. But im sure it is all related.

Also, Mary - I know what you mean about ENT's and list of symptoms but 1 thing I will say is..if you find someone v knowledgeable (I have seen the top neurotologist in my country) they will understand every feeling you describe from brain fog to spinning in the head - it is merely a question of finding the right person who sees countless inner ear disorder patients.

Anna - Adam has MAV - the headaches you experience could possibly be a sign of this - has anyone ever suggested you try MAV medication?

xxx

53. Comment by mary on March 3, 2005 3:35 AM permalink

Thanks Anna and Emma -- and I'm glad, Emma, that you haven't felt the same feeling. You are right about finding a doctor who really understands these symptoms -- I need to search around more -- I'm not sure if I will be able to travel to Portland for two entire weeks to see Dr. Epley.

Anna -- you are amazingly strong to work with all of the symptoms that you are experiencing. I think that I should push myself a little more -- maybe it will hasten my recovery.

Let's all hang in there!

Mary

54. Comment by chad on March 3, 2005 3:45 PM permalink

hi my name is chad i woke up about 4 1/2 weeks ago from a 5 day drinking binge. i felt lightheaded 24/7 and i was very fatigued. i also woke up sweating and shaking some nights. i went to the doctors they gave me mri, bloodwork, etc. they said everything is fine. my family doctor then said i have labyrinthitis. its just constant lighthead, like a feeling that im not there completely its weird. i heard it takes 4-6 weeks to overcome. if i get like 9 or 10 hours of sleep im ok just lightheaded but if i get like 6 or 7 im so tired the next day. I want to have my social life back this sucks completely when will this go away. i think the only reason i feel alittle better is because im learning to deal with the lighthead constantly. PLEASE HELP ME??

55. Comment by Em on March 3, 2005 5:45 PM permalink

Hi chad - look at my site www.labyrinthitis.org.uk and see if anything seems familiar. Labyrinthitis normally consists of different dizziness as well as perhaps lightheadiness - it is a dizziness only found with inner ear disorders - ot normally described as lightheadiness - see website.

Your problem could be liver related or something else - caused by the alcohol.

xxx

56. Comment by Anna on March 3, 2005 8:34 PM permalink

Hi, everybody,

Mary - "Anna -- you are amazingly strong to work with all of the symptoms that you are experiencing". Thank you for the compliment. You said - "I think that I should push myself a little more -- maybe it will hasten my recovery". Somehow, I feel that for me, staying at home is worse, than going to work. I do beleive, it can make my recovery faster. But, it is very personal - nobody should stress his or her body way too much.

Emma - nobody prescribed me any MAV medication. Maybe, it will be beneficial for me. For now, I am going to try Sibelium, which I bought on-line without any prescription. I will let you know on the results.

Chad - read Emma's website, you will learn a lot from there. Maybe, you do not have labyrinthitis at all. And she is right - check your liver first. And for God's sake - stop taking alcohol -it is a terrible poison for you now!

Folks, stay strong.

Anna

57. Comment by chad on March 4, 2005 5:47 PM permalink

well i just came back from the 2nd doctor ive went to see and he alos told me i have labyrinthis and i didnt say anything to him. he said it makes u very tired and lightheaded constantly. they gave me a mri and blood work and it came back perfect. i asked him about alcohol with my liver and that and he said liver disease wouldnt cause a constant lighthead for weeks and any other of my symptoms. but he said when u drink alcohol it makes u more tired and it did indeed. but thanks for the advise anyway.

chad

58. Comment by Em on March 4, 2005 11:24 PM permalink

Have a look at my site anyway and see what you think chad. Its just that lightheaded isnt normally a way to describe labyrinthitis - its a different kind of dizziness -a feeling I had never ever encountered. You also usually have some kind of vertigo esp at the start. Gp's are nt v clued about about vestibular probs and I hate to say it but often overdiagnose labyrinthitis. If it continues, seek a referral to an ENT or Neuro-otologist. Hope you feel better soon xxx

59. Comment by Em on March 4, 2005 11:25 PM permalink

PS) What are your other symptoms? x

60. Comment by rich on March 5, 2005 1:35 PM permalink

I have posted here a few times, came down with VL 3/04 and still have some symptoms every now and then. Mostly get dizzy when overtired. 2 weeks ago I did something I thought I would never be able to do, I rode a roller coaster. Went with my daughter to Universal Studios. Everyone getting off the rides were saying how great they were, my comment was, you should experience it with VL. makes every ride 30X more. I manage my VL every day, stay away from caffeine as much as possible, stay hydrated, get rest... While I am not 100% I am managing. There was a time when I just felt I could not do anything. Getting off the recliner was a chore itself. Everyone stay with it, it will get better, you need to get firm with yourself and just say "this will get better and I will beat this" Best of luck to all.

61. Comment by carol on March 6, 2005 12:21 AM permalink

Hi to all, just wanted to update you on the treatment my husband is receiving at Dr. Epley's office. He has been having ongoing tests to decipher which ear is involved. Usually one ear only is the problem ear, rarely both ears are involved. There are many people I have met in the waiting room and they all have similar stories to all of yours. One man in his mid 20's says that weather and barometric pressure really triggers bad bouts and also he does worse when the weather is cold. He cannot go in a grocery store and says because of this he has depression. The reason I am writing is I want you all to know that do not let any doctor convince you that you are mental or kooky in the head. Many doctors before Dr. Epley tried to tell me my husband was dealing with depression or work related stress. When a doctor does not know what is wrong with you rather than try to figure it out or send you to someone with the knowledge it is much easier for them to throw a prescription of Xanax or Valium at you because it masks the problem and it gets you out of their office. Their ego's are too huge to admit they don't understand inner ear problems. Back to Dr. Epley, he tends to take his time with the actual diagnosis. Their are many inner ear disorders with the same symptoms and something slightly different can help him diagnose the correct problem. I truly feel he is the answer and wish there were more doctors with his knowledge. If any one has other questions feel free to ask because I have lived with this problem since March 2003. My husband was off work for 9 months and is still not back to normal but doing much better. Dr. Epley offers long term solutions not just temporary relief. Bonine available over the counter does help symptoms and they have a form that causes less drowsiness. It seems to work well. But we are looking for a permanent fix. Keep positive and do not let anyone convince you that you are crazy. this is a real problem and there are real cures, you just have to find them. Good Luck. Carol

62. Comment by Anna on March 6, 2005 5:29 AM permalink

Hi, dear fellow sufferers,

I have great thanks to Carol - she is just AMAZING! What a supportive, attentive and thinking wife you are, Carol! Everybody, just look at her previous message. I printed it out and I will force my husband to read it very attentively.(I swear, I will!). He is a great guy, we are together for more, than 30 years. I had bouts of labs/BPPV/ (or who knows what it is) for all these years, on and off. I am usually an active, outgoing , just very normal person. But every time, when I am hit with this disaster, all I hear from my dear husband, are the sentenses like: "Everythings are your nerves!" (what?!), "You are obsessed with your illness" (but, who wouldn't, it this ailment takes your whole life out of you?), "You are prone to anxiety and depression" (complete nonsense in my case!), "You are hypohondriac - you should pay less attention to your pains and dizziness" (my dear darling, I really do not want you to experience what I have!), and finally "Stop chatting on the Internet with others, who have the same problems (he thinks, that all of us have mental problems). It has a bad impact on you" (total lies!) I am really angry with him and myself as well, because, under his pressure, I became almost convinved, that the most part of my problem is in my "nerves, anxiety, and depression". Actually, only recently, I began to be more strict and firm in defending my point, that my "nerves, anxiety, and depression" are all bad consequences of the real physical ailment (and a very tough ailment, by the way!). Carol, please, keep us updated.

Rich - what a good news about your vacationing in Orlando. I am also doing much better. Not ready to go to the gym, though.

Thanks, everybody, for being on this site. Anna

63. Comment by Laurie on March 6, 2005 4:00 PM permalink

Wow.....what a web site Emma!!!!! What a fantastic job!!!!!! I have been dealing with this labs since the beginning of Novemeber, but was trying to convince myself that it was severe anxiety, knowing in the back of my mind it reaaly wasn't. My Doctor told me it was Labs, but I was toooo afraid to believe her and she also told me it would be gone in a few months..which didn't happen. I am getting better, I little more active, but my worst times seem to be at night and waking in the morning. The Fear and anxiety that I feel seems to be the biggest issues for me at this point. Question for anyone???? Is this something that gets progressively better as time goes on??? I'm sooooo afraid of waking one morning back to square one :( Also can showering and water getting in the ears make things worse??? Any feed back would be soooooo greatly appreciated!!!

Laurie

64. Comment by Robin on March 7, 2005 1:42 AM permalink

Hello fellow Labbies,

I got the labs in July 2004,now, I believe I am now 98% recovered. I am feeling like me again. It has been a long haul.

When I was first diagnosed I went to every doctor I could find. I saw an ENT, Neurologist, Allergist and my Primary GP ( I still liked him the best, at least he admitted not knowing about the labs.) I was told from the start that it could last from 8 week to a year or longer. I couldn't believe that this visus couldn't be cured. I had a MRI, CAT, all kinds of blood work, including one for Lymes. All negative, thank God.

This has been the scariest experience of my life. I had never been really sick before. My life was as good as I could ever remember it when I got hit with Labs. It came on so fast and was so dibilitating that I thought maybe I was dying. I will never take my health for granted again. I was out of work for about 4 weeks in total, and I when I went back, I felt I was accomplishing little more than showing up. The anxiety and total sense of helplessness is indescribable. At about month 4, was when the depression really hit me. I thought I was never going to be well again. The depression was caused from having a long-term illness and to make worse, I didn't look sick. I was getting better but, but it was going so slow that I couldn't see any light at the end of the tunnel.

I started slowly going back to the gym and getting more active. This web site helped alot, because I felt validated, and not so alone. I started working on a more positve attitude, it impowered me and I started to fight for my life back. I have been taking Ambien and getting more sleep than than before. I chose not to take an anti-depressant but, talk to someone and find out what is best for you. I am taking good quality multi-vitamins, B-Complex, calcuim and ginko. I am staying active, and learnin to accept that if the barometric pressure drops, I may get a bit dizzy again, but not like before. I am getting my energy and humor back. I missed not feeling like me.

Laurie and everyone out there - don't let this virus take over your life. Like the flu, it can't be cured. It has to take its course. Most of us are lucky, we won't have this for the rest of our lives.

Laurie, you will get better. The fear and anxiety is normal. Why shouldn't you feel this way when no one can give any concrete answers of when this illness will be gone. We have come to expect more from our doctors and forget that they don't have all the anwers and they are only human. (Not unlike our parents, they make mistakes and won't admit it.) ( My folks didn't want to hear about it any more, like it was my fault I was sick.)

Stay positive - this too will pass.

Robin

65. Comment by laurie on March 7, 2005 3:25 PM permalink

Hi Everyone. I'm sitting here in tears because I feel soooo hopeless and tired of feeling this way. Does this terrible thing ever go away???? I'm not dizzy 24/7 anymore. that stopped in Decemeber, but I now seem to have daily spells where I feel off balance. when lying down at night and first thing in the morning I get a dizzy sensation which seems to make me VERY anxious. Please tell me I'll get over this and be myself again?? Its now been 5 months and although there are improvments it seems to be soooooo small! I'm sorry I'm just rambling again because I'm sooooo upset and feel like nobody understands the daliy struggles of this beast!!! I did read emmas web page, but was just wondering does anyone else have problems with sleep and lots of dreaming ( more than the norm ) since this problem came about??

Laurie

Laurie

66. Comment by Em on March 7, 2005 4:30 PM permalink

Laurie - v glad you liked the site. I must say the fact you are no longer dizzy 24/7 after 5 months is a v v positive sign - you absolutely will recover! I am still dizzy 24/7 2 yrs on!!!

By now the virus will have gone - it is the damage/inflammation that remains but the brain will compensate. The key is to stay active.

Yes this does get progressively better. You can get setbacks such as via a cold or illness but the dizziness will return to where it was before. Recovery is slow but it is happening even if you dont think it is.

Sing the guestbk if you want laurie - on the site.

Kp smiling! xx

67. Comment by chad on March 7, 2005 5:19 PM permalink

• World is “warped” and very surreal. As if looking through the world through odd lenses. This feeling is always there. Particularly prominent in the dark. We liken this feeling to constantly looking through a video camera lense or a fish tank. World feels like a dream also.

i read the website and this explains how i feel exactly and that is exactly how the doctor said i should feel. its been exactly 5 weeks and i feel alittle better at times and then i have my bad times. i just hope this will go away. but how u quoted it up above it exactly how i feel EXACTLY... it weird.....but im also very tired....but all my other tests came back negative again so the docotors are almost sure this is what it is.....

68. Comment by Anna on March 7, 2005 5:21 PM permalink

Hello, guys

Laurie, hold on. I agree with Emma 100% on the following: "the fact you are no longer dizzy 24/7 after 5 months is a v v positive sign - you absolutely will recover!" About sleep and bad dreams. Do whatever to sleep more! Laurie, are you taking Ambien for sleep? If not, ask your doctor for it. It's magic - and no side effects. I am still taking Ambien at bedtime. Robin, who has just recovered from labs also takes it. Bad dreams - they can be terribly scary with this illness. Awful nightmares. I am still having them from time to time, I scream at night. Try to say to yourself - "Laurie, calm down. It was just a bad dream, not more than that...." As for anxiety and depression - if you are not taking anything - try to start Paxil, or Zoloft, for example. As I can figure out from Laurie's posts - she does need an anti-depressant medication!!! Laurie, do you hear me?!!!

Everybody, stay calm and be patient.

Anna

69. Comment by Laurie on March 7, 2005 6:28 PM permalink

Hi Anna,

My Doctor has given me Xanax for the anxiety which does help me sleep and clam the anxiety that comes with the labs for me.....Other than that, thats all I take.

Thanks for all the reassurance everyone, I soooooooo needed it :)

Laurie

70. Comment by Laurie on March 7, 2005 6:32 PM permalink

Just another quick question.....anyone very uncomfortable in the shower...I get extremely nervous in there, I fight with myself everyday :( Hope this doesn't sound to crazy, but I'm afraid in there

Laurie

71. Comment by chad on March 7, 2005 7:04 PM permalink

one more thing ive heard alot of people brought this up when they are feeling this way am i correct???? i find myself straining looking at the computer after awhile...its like my eyes are straining and im squinting to look at it....

72. Comment by chad on March 7, 2005 7:05 PM permalink

and yes i did have my eyes checked there fine...hahahah

73. Comment by Em on March 7, 2005 8:45 PM permalink

Laurie

The nightmares I get - partly anxiety and partly inner ear. I also get vertigo at night if I sit up etc - the environment moves badly.

The shower - yes - v normal - its because its v enclosed so makes the motion worse for me - feels like a lift in motion or a box hanging in mid air.

xx

74. Comment by Laurie on March 8, 2005 5:40 PM permalink

Hey everyone...seem to be having another tough day. I noticed that I don't really get dizzy much anymore, I do in the morning and at night mostly, But I always have like this funny feeling in my head, sounds crazy I know. Is this common with labs?? I have suffered from Anxiety for 13 years, but this Labs has given me anxiety to which I have never experienced before!!!! My Doctor has given me Xanax to help, but it doesn't seem to help the " funny head " feeling. almost like I could get dizzy at any momment, but I don't?? Wondering if its now my anxiety playing tricks on me. any input would be sooooo great :)

Laurie

75. Comment by Em on March 8, 2005 10:02 PM permalink

The funny head feeling is v v common with labs and do u know when it occurs? When labs is ending and you are compensating and so you are not so much "dizzy in the head" but there is just a "funny feeling" like you describe. You are recovering!!

xxx

76. Comment by Laurie on March 8, 2005 10:12 PM permalink

OH Em...you have me in tears over here!!! Is it really true that you get that sensation towards the end of Labs???? OH Thankyou GOD!!!!!! :)

Laurie

77. Comment by Em on March 9, 2005 11:55 AM permalink

Yes - according to fellow survivors - yes! And Ilia (on my site) had exactly that when she was near the end. I have it on v good days.

Keep smiling! xxx

78. Comment by Anna on March 9, 2005 2:34 PM permalink

Just a message from a person who was unlucky to be sick with labs for a long time. When you are sick for a long time, sometimes you really feel guilty, like it is your fault. Exactly, like Robin said: "My folks didn't want to hear about it any more, like it was my fault I was sick".

Maybe, it is true for any long illness, but with labs I am just overwhelmed with this wrong feeling: "I am not optimistic enough, I am not pushing myself hard enough - that's why I cannot recover quickly." Everybody around see that you look "just fine" and your major tests come absolutely normal - so why are you staying at home, why are you complaining, why are you not "cheerful"? Sometimes you really can think bad about yourself, and you selfesteem drops down significantly. This "feeling guilty" is a very wrong and unhelpful feeling in our situation. It is OK to "feel pitty for myself", or "pitty for my family, that they have to deal with my illness" ... But no "guilty feelings"!!! It is not your fault, that you got sick!

Laurie - you can use a special small chair for shower. You can buy it on-line or in a medical supply shop. You will feel more secure sitting and taking a shower. I know that many people with balance disorders use it.

Chad - when you feel your eyes feel strained from a computer, or TV - immediately take a break and rest until you feel better. Unfortunately visual disturbances are very common with labs and other inner ear disorders. I could not watch TV and work with computer completely for about 3 months. Even now, I need to take 10-15 minutes breaks every hour from looking on the computer screen, because I start feeling dizzy. Scrolling up and down the screen - is the worst part.

Anna

79. Comment by mary on March 9, 2005 5:47 PM permalink

Help -- I am having a terrible day. The last week I have felt so much better and then today has been horrible

Right now I feel like I am going to pass out -- every time I get out of bed/or stand up I feel like my legs are going to collapse and I have an overwhleming feeling that I am going to faint. My legs feel like they are sinking into the ground and the ground seems like it is at an angle. This feeling of faintness seems more extreme than before -- I really feel like I may lose consciousness but I haven't yet. My stomach is also a little off this am.

The last day or so I have had a feeling where it seems like a very bad vertigo episode may be impending but it hasn't happened -- I haven't had those since the beginning of this thing -- seven months ago.

The weird think is that my body swaying has been better lately -- usually when that is bad everything else is bad.

What is going on with me?????????????? Am I going to faint or have a stroke or something worse?

Sorry for sounding so pathetic and scared but I hate all of these feelings.

80. Comment by on March 9, 2005 8:17 PM permalink

Hi Mary.....I too get the same feelings, that I will pass out and Yes I believe it is due to the labs!!! I was just saying the same thing to myself, I was having such a good week and then WHAM this morning I got hit with the feeling that I may get dizzy again, but I haven't!!!! Lets just chalk it up as a BAD day!!! We will get through this :) Anyone seem to fear going out of the house. I'm sooooo afraid!!!

Laurie

81. Comment by chad on March 9, 2005 9:28 PM permalink

mary dont worry u will be ok its just a ear infection....believe me there is thousands of people that feel like u do your just worried .just sit back and watch tv and enjoy something and it will go away...and breath in a brown paper bag if u feel like your going to pass out it will calm u down.......

82. Comment by chad on March 10, 2005 2:27 PM permalink

question for everyone...i know this sickness causes alot of anxiety...i start feeling all around my body thinking i feel lumps and stuff on my head and neck etc....is it just me or after being sick now for like 5 weeks i think im just driving myself crazy..does anyone else have this feeling.....i already hat a ct scan of my head chest etc...i think im just driving myself crazy cause ive been sick for like 5 weeks???????

83. Comment by laurie on March 10, 2005 4:03 PM permalink

Hi Chad,

I couldn't have decribed it better unfortantly!! I believe it the anxiety 100% I do the same exact things that your doing!!! I have been to the doctors numrious times, the Er thinking there is something wrong. I believe the Labs causes such extreme anxiety that we become hypochonrics. My doctor put me on Xanax ( anti anxiety meds ) just until I get through the labs because the anxiety was soooooo bad! I have suffered from panic and anxiety for 13 years to the point where I wouldn't leave my home, I got myself through that without meds, and lived a very normal life! This anxiety due to labs was just toooooo much and I was like a car in drive with the foot on the brakes just spinning in the dirt. This labs creates anxiety like I have NEVER experienced before!

Laurie

84. Comment by Anna on March 10, 2005 4:05 PM permalink

Hi, everyone,

Mary - you definitely had your BAD day yesterday. It can last for several days, unfortunately. Just hold on during these periods! Look, Mary! You did have a good week! These periods will become longer and “better”. If you get extremely nervous and start feeling, like your are passing out, or even going to die, that there is no enough air to breath, do the following. On the contrary: breath "shallow", or better into a brown paper bag (Chad is right). Speak to yourself constantly “Mary – calm down, it will pass, you can go through it…”. Miraculously, it does help to lessen the scary pressure on your chest and throat, and "numb" feeling on your face and arms.

For everybody! - Do not allow such a panic attack lead you to ER – it is useless. You are not having a stroke, or going crazy – it is an inner ear disorder, it manifests itself in such a weird and scary way. I have been in the ER three times with panic attacks caused by labs/BPPV. Only on my third (and the last rush) to ER I have learned, that it was “panic”. I found all the information on this condition. Never since that time I allowed this “extreme anxiety”, “panic” (call it “extreme fear”, if you like) beat me. It does not mean, that I do not have anxiety, fears, bad moods or hypohondriac thoughts. Of course, I do - with the recurrences of this dreadful illness. But, I think, I learned how to cope with it.

I wish, I could help you more, guys, and myself as well.

Anna

85. Comment by chad on March 10, 2005 4:08 PM permalink

i know i just feel constantly lightheaded so feel the back of my head and left side is alittle bigger than the right side so i think there is a cyst and its pressing against my head and making me lightheaded and tired etc....im going crazy i just want this to end....im now a hyprocondriac and i never was before in my whole life...

86. Comment by chad on March 10, 2005 4:11 PM permalink

the worst part is i just had a ct scan a month ago and they were like everything is fine....im a nutcase.....

87. Comment by laurie on March 10, 2005 4:17 PM permalink

Chad....I never was a hypochindric in my life. I always was healthy and felt healthy. I really believe its due to the extreme anxiety. I soooooo agree with Anna, talk positive to yourself and tell yourself ITS JUST ANXIETY!!!!! It is distressing, but not dangerous!!!! We will all get through this. On a positive note...Went to Walmart this moring for the first time in months :) Very nervous and felt funny, but I did it!!!!

Laurie

88. Comment by mary on March 10, 2005 4:33 PM permalink

Thanks so much Chad, Laurie and Anna -- this is definitely a bad bad relapse with symptoms that I haven't had yet. Your advice is great -- I don't know what I would do without you all to calm me down.

I can't write anymore now b/c it is making me feel bizarre like I'm going to pass out.

Hang in there everyone -- Mary

89. Comment by laurie on March 10, 2005 4:53 PM permalink

OH NOOOOOOOOOOOOOOOOO, Now I'm scared to death!!!! I didn't know it can get suddenly worse for no reason?? I thought once you started to recover it was nothing but getting better and better????? :( You okay Mary???? I had a bad day yesterday too, but seem much better today. Have you been sick with a cold or something Mary???

Laurie

90. Comment by on March 10, 2005 7:20 PM permalink

does anyone get the fullness in their ears and I have also noticed that I now puffy bags under my eyes that the worst in the morning???? The fullness is most bothersome when I bend down, but nooooo dizziness. Could it be that my ears are finally trying to stablize????

Laurie

91. Comment by chad on March 10, 2005 8:49 PM permalink

ya my eyes are alittle dark under them and they get alittle blood shot also......dont worry its all part of it

92. Comment by Anna on March 10, 2005 9:52 PM permalink

Fullness in the ears, stuffiness of the nose, red eyes and heavy pressure on the forheard - right between the eyes - are the most annoying symptoms for me at this point. These symptoms are better, or worse during the day, but they are present all the time. Chad is right again : "dont worry its all part of it".

Mary - very often in front of the computer I feel, that I am going to pass out, or my head is floating somewhere. If I am at home, I just go and lie down and try to relax as much as I can (no TV, no noises, ask your family to be kind to you, and to respect your illness). But this "almost passing out feeling" in front of the computer often happens at work. So, I close my eyes, hold my head with both hands and try to relax all muscles on my forhead and shoulders while sitting. I am happy, that my kind of job allows me to have this time to compose myself.

Laurie - you did it - shopping in Wal-Mart!!! To all of you - Recently, just by acident, I met two peolpe who had all of these labyrinthitis symptoms (terrible, awful, unbeleivable, they said) for 8 to 10 months. For both of them these episodes happened just once in their lives and never returned back. There is hope!!!

Anna

93. Comment by Em on March 10, 2005 10:19 PM permalink

Laurie - in response to the entry you left on my site - yes there usually is damage if labs continues BUT this does not mean you have it forever! The brain compensates. Damage basically means there are conflicting signals between each ear - asymmetry - this can be compensated for - do not panic!

Kp smiling x

94. Comment by Kevin on March 10, 2005 10:28 PM permalink

Hello Labbies,

I haven't posted for 2 months now, previously been posting since July 2004 when I first came down with Labs. So I started the new year with new optimism and started back at the gym and walking over the hills near my home. Eating a really healthy diet and thinking really positive. Then one night I woke in extreme pain in my left abdominal side, pain it was so severe I nearly called the ambulance. Then it went and did't return for 2 weeks. During this period I still suffered from the ups and down of my fuggy head. When the pain returned it was time to visit my GP, the following week I really thought I was on my way out. I was scared, depressed and anxious. After several visits to my GP I was eventually referred for some scans. I have a Kidney Stone which will be removed a week from now via surgery. In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is now helping my condition with Labs. I think I know more about kidney's and the vestibular system than most GP's by now.

I do have one question if anyone can help. I will have to have general anesthesia for the operation, I am worried, has anyone else had this while suffering from Labs? My may concern is I'll never wake up... its hard enough waking just normally on some occasions with this foggy, fluffy head.

Also has anybody researched parathyroid disease?

http://www.parathyroid.com/parathyroid-symptoms.htm

The symptoms are similar to Labs with the exception of Kidney Stones which i now have. Once my kidney stone has been examined and tested they may look into this further. Although I'm pretty sure I have just had a run of bad luck getting Labs and kidney stone at the same time.

Thanks

95. Comment by Kevin on March 10, 2005 10:30 PM permalink

Opps I had a typo above

In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is now helping my condition with Labs.

should have read...

In the meantime my body's blood system is toxic, a chemical imbalance which I am sure is NOT helping my condition with Labs.

96. Comment by Laurie on March 10, 2005 11:30 PM permalink

Just kind of curious....does anyone know if there is a symptom pattern to recovery with labs??? like at first you get the severe dizziness, then unsteadiness, foggy head. i guess what i'm saying is how do you know your near the end????

laurie

97. Comment by mary on March 11, 2005 3:57 AM permalink

Hi everyone -- Thanks again for the replies -- today was a little better than yesterday but I can only sit at the computer for a second b/c it is still making me dizzy.

Laurie -- I have not been sick. I don't know what caused this relapse -- the day before it happened I did not watch what I ate very much -- I think that I had way too much sugar and salt which can really make things worse (at least I have found that to be the case -- more of a problem with salt than sugar). I also am going to get my period which always makes things worse (sorry to mention that guys!).

Also, Laurie and Chad, don't start worrying yet about having this long-term like some of the rest of us (and I know that at seven months I have been luckier than many others). From what I have read, many people do get over it within 6-8 weeks or maybe a little longer than that. You have a good chance of recovering within that time frame or before.

In regards to eyes, I almost always have very dark circles under my eyes and when my symptoms are pretty constant, my eyes look completely spaced out and strange. I think that this appearance is "normal" b/c our eyes are doing extra work keeping us "balanced" since our vestibular system is not working properly -- they are very tired!

Kevin -- so sorry to hear about your surgery -- you may want to consider reading through the posts at the dizzy lounge (you can google for the actual website name -- I don't have it) -- someone there may have gone through surgery with an inner ear condition -- if not, you can register for free (it's very easy) and then post the question.

Hang in there everyone -- Mary

98. Comment by Laurie on March 11, 2005 1:17 PM permalink

Hi Everyone.....Okay now I am soooooooooooo SCARED!!!! Woke up this morning feeling like my ears were plugged and my nose is a little dry and stuffy, and my eyes are always pufffy. anyways I was walking around the house and for a brief second my ears did something really funny and it made me feel wierd. Like I said it was only for maybe 2 seconds. Anyone know what it might be??? I had a sinus infection a month ago, maybe I never got rid of it totally!!!! I sooooooo scared now!!! Can anyone explain that funny feeling with the ears????

Laurie

99. Comment by Laurie on March 11, 2005 1:19 PM permalink

Hi Everyone.....Okay now I am soooooooooooo SCARED!!!! Woke up this morning feeling like my ears were plugged and my nose is a little dry and stuffy, and my eyes are always pufffy. anyways I was walking around the house and for a brief second my ears did something really funny and it made me feel wierd. Like I said it was only for maybe 2 seconds. Anyone know what it might be??? I had a sinus infection a month ago, maybe I never got rid of it totally!!!! I sooooooo scared now!!! Can anyone explain that funny feeling with the ears???? Semms like my ears opened up and they aren't as plugged now after that happening.

Laurie

100. Comment by Em on March 11, 2005 1:28 PM permalink

Laurie - as for a pattern of recovery - I have asked many specialists this and noone knows BUT from knowing people with this lightheadiness is the final stage instead of dizziness as such.

The ear thing could mean you are gettng a cold - happens to me sometimes.

xx

101. Comment by chad on March 11, 2005 2:36 PM permalink

i was talking to a doctor and i heard with this sickness i dont know if this pertains to any of u but kinda like what i have is that u can just feel lightheaded the whole time u really dont need to have any real dizzy spells...i get alittle alittle quick dizzy if i turn to fast but for the most part im just lightheaded....??? can anyone back me up...

102. Comment by Anna on March 11, 2005 3:50 PM permalink

Good morning, everyone,

Have no time for a long message, but just a short one - for Kevin.

Kevin - after I had my first six-months bout of labs/BPPV following hepatitis - A infection, I had two surgeries with general anesthesia (sorry, do not know the type of drugs used, they both were intravenous). I woke up after both surgeries, with my head feeling “funny”, I felt nauseated for a couple of hours, which happens after general anesthesia with the majority of “normal” (non-labbys) people. I did not have any bad consequences of general anesthesia in terms of having another long bout of labs. It happened only many-many years later, with another (hepatitis B infection), when I was again ill with bad - 7 months long - bout of labs/BPPV. This is my personal experience. Mary is right – look at http://p084.ezboard.com/bdizzylounge on the Internet. There are so many great people there with all kinds of experiences.

Anna

103. Comment by Kevin on March 11, 2005 4:29 PM permalink

Hi Anna,

Thanks for sharing the experience, I'm sure I'll be OK just feel really anxious about general anesthesia, more so than the operation. I have very strange sleeping experiences especially on waking and just hoping that the anesthesia won't make it worse.

Thanks again.

104. Comment by Laurie on March 11, 2005 6:46 PM permalink

Hi everyone....I have been having this problem with my ears feeling plugged up for 2 days now. It is driving me crazy!!!!! anyone else have it??

Laurie

105. Comment by Laurie on March 11, 2005 11:00 PM permalink

I had NOOOOOOOOOOOOOOOO idea that xanax would slow the recovery process of labs? I was just reading it on the dizzy forum :( I take xanax for the Anxiety, didn't realize it was helping the dizziness also???

Laurie

106. Comment by mary on March 12, 2005 2:20 AM permalink

Laurie -- I think that the feeling of your ears being plugged up is very common. I have this problem -- it comes and goes -- other ear symptoms that I have include a pulsating feeling in the ears, high-pitched whines (although not very often and it only happens for a very short period of time), and I am really sensitive to any noise. Emma's website gives a good list as does the dizzy lounge site. You're not alone.

Hope everyone is having a better day or at least able to hang there.

I just read a post on the Dizzy Lounge about when people increase their medications. I haven't taken anything for this except meclizine in the very beginning for about a week.

Do things like xanax and valium suppress your vestibular system -- I know that meclizine does?

Mary

107. Comment by Laurie on March 12, 2005 2:52 AM permalink

How are you feeling Mary??? Was glad to see you post, hoping your feeling a little better :) Your in my thoughts

Laurie

108. Comment by Laurie on March 13, 2005 8:15 PM permalink

Okay, Now I'm REALLY REALLY confused!!!! I was on the dizzy message board and was reading that If you have Labs for more than a few weeks its most likely some other inner ear disorder. But every other place I read the say that labs can last MONTHS????? Any feed back on this confusion would be great.

Laurie

109. Comment by Em on March 13, 2005 8:42 PM permalink

Laurie - ignore the comment you read - I have seen it too - it is inaccurate. Labs CAN last months/years.

xxx

110. Comment by Laurie on March 13, 2005 9:10 PM permalink

Thankyou Em....knew I could count on you for the right information!! :)

Laurie

111. Comment by Laurie on March 14, 2005 2:49 AM permalink

Hi Everyone....Just another one of my quick questions :) Has anyone ever heard of or experieneced elevated white blood cell count due to labs. I was on a new message board and read some people saying how they had no health problems other than the labs, but had an elevated white blood cell count. I too in the beginning of my labs had a white blood cell count of 18000, which is high, but no fever or being ill other than the labs. My doctor chalked it up as being stress. HUH, wonder if the 2 Viral labs and white blood cell have anything to do with each other???

Laurie

112. Comment by Nikki on March 14, 2005 7:01 AM permalink

Laurie, When I first started having vertigo I had a blood test (I thought it was a blood sugar thing) and sure enough, I had an elevated white blood cell count. However, the neurologist diagnosed me with BPPV. So its either a coincidence or a misdiagnosis.

113. Comment by Em on March 14, 2005 8:05 AM permalink

A white blood cell would make sense at the onset of labs...but you'd normally have symptoms laurie... But yes I do think they are linked - the cell count and labs.

xx

114. Comment by Laurie on March 14, 2005 8:50 AM permalink

Hi Em and Nikki,

That makes sooooo much sense in my case. Doctor couldn't figure out why my white blood cell was elevated. aside from the Labs I was healthy. Em, what do you mean bt having symptoms?? I had every symptom of Labs, but thats it. My GP knew I had the Labs, she is the one who said I had it.

Laurie

115. Comment by Anna on March 14, 2005 3:13 PM permalink

I also had elevated white blood sells level in the beginning of my labs/BPPV. "Stress" has nothing to do with elevated white blood sells level. The latter can be due to some kind of infection that your body fights with.

Anna

116. Comment by Em on March 14, 2005 6:10 PM permalink

Laurie - I mean that along with a raised white cell count- you would normally have viral symptoms - tiredness, glands up etc xxx

117. Comment by chad on March 14, 2005 8:46 PM permalink

white blood cell count up is definitely a infection.....not to scare anyone but if they were way way up then u should be worried about more severe stuff....but for now its not high enought to worry about that its probably a bacterial infection......that should be checked out........if the white blood cell count is normal its usually a viral infectioin...but im no doctor thats just my advise

118. Comment by chad on March 14, 2005 8:48 PM permalink

what is bppv

119. Comment by Em on March 14, 2005 9:20 PM permalink

Chad:

http://www.labyrinthitis.org.uk/bppv.htm

xxx

120. Comment by mary on March 14, 2005 10:49 PM permalink

Hi everyone;

Thanks for the encouragement, Laurie. I'm still in the midst of bad spell -- hoping it subsides soon.

I haven't been able to drive or walk very well (except around the house) since Wednesday. My husband and I went on a walk yesterday and I got one of those intense fainting feelings halfway home -- mixture of feeling like I was walking on a boat and air with intense lightheadedness -- I thought he was going to have to carry me.

I know that things could be much worse -- but this experience is a nightmare!

Anyone who has had trouble walking or driving -- how do you handle it??????????????

Sorry for the venting -- Mary

121. Comment by Laurie on March 15, 2005 2:47 AM permalink

Can soneone please explain what the difference is between BPPV and Labs??? What are the symptoms??? Are the symptoms the same or different??? Boy I'll tell you, the Dizzy Board has sooooooo many wonderful people there, But I think I will stick to this message board instead. For some reason, That Board scares me and makes me more nervous :(

Laurie

122. Comment by mary on March 15, 2005 4:57 AM permalink

Laurie --

Check out Emma's website -- she discusses both. Hope you are feeling better.

Mary

123. Comment by Nikki on March 15, 2005 6:20 AM permalink

In regard to BPPV - I have heard it has tendency to recur within five years of you getting it. Does this mean that it will be coming every couple of years (or less) for the rest of my life, or does it mean that I'll probably get a repeat and then it'll leave me alone? That'd be too much to ask...

Does anyone know if it can be sparked off by flying? I'm going to New Zealand in a couple of months (about a 3 1/2 hour flight from Sydney), am I likely to be dizzy all holiday?

I am in a bit of a bad mood because two weeks ago I almost felt like my old self and then last week I got a virus. Today, as I am sitting here typing I feel like the chair is tipping me forward.

I know I havent had "it" anywhere near as long as some people but I'm bl**dy well fed up with it. I NEVER used to get sick and now I seem to be sick all the time.

124. Comment by Laurie on March 15, 2005 4:55 PM permalink

Hi everyone, I was just wondering.... I have always suffered from neck and tension headaches alot, but I seem to notice that when I get them now, Like right now :) I feel more unsteady off balance on my feet. Is this Common?? Its strange I have also suffered from anxiety for a number of years and one of my main symptoms is/ was an unsteady feeling. I'm wondering if the Labs is on the way out the door for me, but Now after suffering from this Terrible Terrible thing called Labs, If I'm more sensitive to the unsteady feeling and start to panic and worry about the Labs coming back. Does this make any sense??? I'm not really dizzy anymore, no actually I'm NOT dizzy anymore. When lying in bed this morning I put myself into a little test. I turned my head to the left and stayed that way for a few mins...no vertigo or dizziness, Then to the right..again nothing, then laid flat on my back...Nothing, stood up and looked up with my head all the way back...Nothing, bent my neck looking down at the floor, Nothing? Now in the beginning of my labs, I couldn't do any of this!!! now its just the unsteady thing that bothers me when I walk around...not terrible just bothersome. So what do you guys think??? I'm sorry if I seem a bit obsessive, but I'm a very very impapient person when not feeling well :(

Laurie

125. Comment by Em on March 15, 2005 5:05 PM permalink

The unsteadiness could be left over remains from labs BUT there is also a theory that anxiety can hinder compensation from labs and excerbate the symptoms so the unsteadiness COULD be anxiety if u get me!

Im thinking it is a mixture of both - all you can do is relax lots and keep active so that compensation can complete. xx

126. Comment by chad on March 15, 2005 7:01 PM permalink

hey everyone i have some good news...but i dont want to jinx myself...its been like 6 1/2 weeks now and i finally have my energy back...still alittle lightheaded but not as bad as i was weeks ago...i hope it is going away.........i see the specialist tommorrow to make sure it is going away and nothing else crazy...wish me luck IT DOES GET BETTER!!!!!!!!!!!!!!believe it or not

127. Comment by Laurie on March 15, 2005 7:35 PM permalink

I get everything your saying EM....You are sooooooo awesume (((((big hugs for Em)))))

:) Laurie

128. Comment by Laurie on March 15, 2005 7:38 PM permalink

Now heres the BIG question EM, My Doctor has me on Xanax ( anti anxiety Meds) Will that slow the process of compensating with the labs????? It seems to calm things down, including me :)

Laurie

129. Comment by Anna on March 15, 2005 11:37 PM permalink

Hi, guys

Laurie - you said: "no actually I'm NOT dizzy anymore". You tried any position possible, and you can not produce any of the dizziness! (I wish I could say that) You are really on your way to recovery. Laurie - just force yourself to be patient, everything is going just fine for you! Do not read too much on "dizzy lounge" board - it can be quite depressing not only for you, but even for a long-term sufferers, like me. As well as Chad - it looks like he is doing OK. Chad - congratulations.

I still feel dizzy in many of head and trunk positions. I really hate walking,let alone standing at one place and talking to people. But I learned to cope. Lately, I definitely feel more energy, and have had less headaches, than before. So, I am quite optimistic.

Mary - I completely understand what you mean by having not enough energy for returning from a long walk even grabbing on your husband's arm. It happens to me all the time. I think, that we overestimate our strength and ability to keep our balance for a long time. Especially, when we talk at the same time. I am very sorry,that it is happening to us. At the same time, these walking exercises is the best VRT you can think of.

Nikki - I will share my experience with flying later this night, or tomorrow. Too tired after a long working day, and I have to drive myself home (7 minutes of driving - quite a challenge for me - but I know, that I can handle it!).

Good luck to everybody.

Anna

130. Comment by mick gossling on March 16, 2005 3:02 PM permalink

I all, just thought I might bore you all with my experiences of various ear problems for the last 28 years! May 1977 I had dizzy spells and panic attacks, my doctor was sooo arogant he didn't care, left me in bed after three weeks and went on holiday, "dont call the surgery because the locum didn't know the erea and wouldn't come out" he said. well I did need to call the surgery and the locum did come out (I am 200 yards from the surgery) he got me booked in to the ent the next day, they diagnosed accute otitis media, I lost my balance for 6 weeks, couldn't stand up at all! Anxiety took hold and I was on diazapam for 10 years! had to get myself off them as no one seemed to be able to help, that was hell. 1984, had a mastoid operation on my right ear, 1996, had an operation on my left ear for a "radical mastoid", my eardrum was in "tatters" and had to be rebuilt my lft ear has never felt right since then. After the op I started having "drop attacks", scared me silly, sometimes they were mild and sometimes they were sooo scary I thought I was going to die! 2004, february, had my dealing with the dreaded labs! what on earth was this? spinning like I was on a fairground ride! had about four episodes of this during the year, went to the ent hospital in february, they told me it may last a week or two, went back to see my audiologist, she said "if I press the side of you ear, does it make you dizzy?" I said no "well its all ok then" duh! I asked her what was wrong with me for all thes