Hi again,
OK, so Im having one of those I cant believe that I still have this, when is it gonna go away, why did I have to get this type of weeks. Ive had all the tests, MRI, two sets of blood work, CT scan, ENG...all normal. I know im very fortunate but I cant seem to shake this thing off. Its been 3 months and I dont know how much more I can really take. Sorry to vent, but my question is...with VN is it common to just feel like all around garbage?? The dizziness is by far the worst symptom but is it normal to 70 percent of the time have a headache and just feel like your head is a weird full feeling, like when you have a cold and you just blew your nose a million times? Im only 18 and feel like im 90. Ive tried prednisone (steroid) and that didnt help. Im going to a very good neurotologist and I know it cant be anything serious with allll those tests run, but do these symptoms seem pretty common for VN? Any info, coping strategies, remedies..ANYTHING would be greatly appreciated. I just dont feel like Im getting any better. I will have a few good days then WHAM its back. Also, anyone feel worse when they first wake up in the morning or from a nap?

I completley understand how you feel. I had the dizziness for six months before it went away. I used to look at my calendar and flip through it wondering what month it would be when I felt normal. I felt like I was swaying around, and I had this foggy head thing going on too. Not really a headache but a generaly fogginess. My ears also felt full, they clicked, and I almost felt like there was water in my ears, and if I tilted my head, it would come out. It never did, it was just a feeling.

Try to hang in there. It will take longer than 3 months to feel better. I know that is way too long to have this thing, but I had it longer than 3 months and did recover. In fact I got in four years after recovery, and have pretty much recovered in about 3 months, half the time of the first episode. I think I got it again because I decompensated due to a horrible flu/bronchitis. That doesn't mean every time you get sick you will feel dizzy. I got sick plenty of times and didn't feel this, just so happens I had bad luck.

Try to take deep breathes and keep the faith that you will feel better. Things will get better. You said you have good days...that is wonderful! You're brain is learning to compensate... that takes time.

good luck!
Joy


:wave:

Sorry you are feeling so low (((((((hugs)))))))
I have had "this" (whatever it is ....VN....BPV...MAV....) for 2 years now. And all I can say is it is a VERY SLOW process to recover. You are at month 3, it sounds like you aren't doing too bad for month 3. I was still unable to do ANYTHING at month 3, I didn't feel even half way decent until 12 months.
All I can say, is it DOES get better. It just is so slow! I have gone threw a million CRAZY symptoms, from vertigo, dizziness, ear fullness, brain fog to near fainting, and the list goes on. Now that I'm 2 years into this, I'm only left with slight dizziness and visual distrubances. I now longer have the brain fog (thank heavens!), or a lot of other of the symptoms I had to begin with. I, like you, had days in the beginning where I thought I was cured, only to be knocked back 10 pegs the next day.
Just hang on, it is a very very slow process, but it does get better, just not as quickly as we are used to. We are used to getting better in a week from a cold. This is different and is it slow.
Take it day by day and know in your heart you will recover fully.

Hi Emily
I think we can all relate to how you are feeling - I have asked myself why me so many times, the despair that its continuing and feeling that your life is just going to go by without you being able to just be normal and do normal stuff. I am in my 9th month of this and can see massive improvement over the earlier days. I try to look back a month, two months, or 3 if necessary to see what I am doing now that I wasn't then, and to see what improvement has happened. That I find really helpful to see that I am recovering. I bet you are much improved compared to 1 month or 2 months ago.

I too have a vast array of symptoms that I can't believe relate to the vn. All that you describe I have suffered too, along with shakiness, faintness, fatigue, wierd head, a whole host of things, I think its that the brain is trying so hard to cope with the dizzyness it can't cope with normal stuff too hence the headaches fatigue brain fog etc.

Emily you will get better. The brain is compensating, but sometimes it can't cope and thats when you feel bad again. But it learns so you won't be in this state for ever. I used to think that the more downs I had early on then the less I would have later on - because my brain would have decompensated then compensated for it so it was less likely to happen later on. A bit wierd logic really but helped me.

Anyway, hope this finds you feeling a bit better, theres loads of support on the boards so talk to us.
Tesss

Been having a similar emotional lapse like you recently. Had this nearly 3 years...they say however that it isnt the case - the longer you have it, the less chance it'll go. I am better than the beginning but not a great dela - still have 24/7 dizziness, imbalance, motion and brainfog. Can only work part time. Thsi thing has truly wrecked my life as I knew it and I grieve every day for the life I had before. However none of us must lose hope. 3 mths isnt long for this Emily so keep going and stay active. Yes, I feel much worse when I get out of the bed for about 15mins.

It is good that you are having good days - as it shows that you CAN and WILL have good days all the time soon.

Part of the struggle of this illness is the mental aspect - not that it causes or heightens the symptoms - dont mean that - but the constant fight with this disorder and not knowing when it'll end. The key is to banish those negative thoughts and to keep on top of this condition.

Keep smiling xxx It will go xxx

Hi Emily,

I feel exactly like you except I have a headache 100% of the time. I've really been struggling with this for a long time; why me, when's it going to end, doubting it will end, etc. If you look at my posts, there were some very reassuring information submitted by everyone on this board. I've been tryng to only read the positive stuff becasue the other information seems to bring me down more. I don't feel I'm strong enough yet to deal with the negative stuff. It is always worse in the morning. I'm not sure if it is actually the symptoms or if I go to bed at night thinking it will be over in the morning and when it is not I get so depressed. I do try every morning to get up and take a shower right away and try and start my day. If I can get going then my day seems a little easier to deal with these symptoms. As stated in some of the responses to some of my posts, others felt I should try and not come on the boards so much because it can bring you down. I tried that yesterday and tried to kept busy and I didn't cry once all day. That was a big accomplishment for myself. Not feeling too great today so I am not going to stay on the board too long.

I can say that the first 4 months were by far the worst. I've had this 6 months but have been ill for 8 (cold/virus, ear infection before this all started). I know that if I can calm myself down for awhile then the symptoms seem a little easier to battle.

Take care,
Gloria

Hi Emily,

It actually sounds like you are doing great -- As long as you have started to have good days intermixed I think you are getting better. Sometimes you can get 4 good days and 2 bad weeks and this should start to reverse itself to the point where you'll get 2 good weeks, 4 bad days, but the bad days shoul dlessen in severity each episode.

Just hang in there girl... I think you will be much better in about a month... Thats my feeling.

Tummy

Well I forgot to answer the question -- Yes, I feel terrible in the morning or after I take a nap or lay down. I feel better in the evenings... And yes, I feel like crap all the time.. its hard to put my finger on the feeling... But I equate it to being hungover... You just generally dont feel well at all.

Hi Emily,

I have been suffering from this for 7 months now, but the symptoms seem to fluctuate. There were times where I felt like it would never end then I have times where I can deal with it and think of the good things in life.

The only real advice I can give you is to keep pushing with the Doctors. A man I work with had very similar symptoms and after 6 months or so they got much better and he can participate in his normal activities now, but occasionally has a problem. His Doctor was very closed minded and offered very little testing. Now he's able to see whatever Dr he wants and is much happier with the results.

Perhaps try a good Allergist. I found an ENT in my area who also works extensively with allergies. I tested positive (2-4 on a scale of 0-4) for 55 of the 75 environmentals he tested me for. I've been told by the Doctors at Loyola University that this was caused by acid reflux, migranes and as a result of psychological problems.The head of the Allergy department at Loyola told me that I was only allergic to ragweed and nothing else (he only tested me for ragweed, cats... 8 things total) Any or all can be the cause, but when you find a treatment that works, stick with it and be patient, as this has gone away for so very many people.

I am a "newbie" to this board, but the people here are so very kind and helpful, so check often, as they can give you greater information than me, and are extremely supportive.

Good luck and I'll pray for you kiddo!

J

WOW, I thank all of you SO much from the bottom of my heart for all your encouraging words. I dont really know what to say except for that I hope one day all of you feel completely better. You definitely have to experience to have ANY idea of how crappy this can be. Again, thanks to all of you and please feel better soon. You all deserve it.

Hi
I know what you are going thru....I felt the worst for the first 3 months, I had it years ago, started the end of January, and in April I was still feeling like crap with the same symptoms as you..When I was first dx, the doctor said it lasts 2 weeks! So I really thought I was a rare case and I had some terrible disease..But after I started reading up on it, I found this was not true...I dont think I felt pretty much completely better until 6 mos., and then I still had symptoms off and on...Actually I had a recurrance after 3 yrs, but it was not bad at all, compared to the first..I think the first episode is always the worst, and lasts the longest, so at least that is some comfort that you most likely will never get it as bad as you did the first time..The 2nd episode was just dizziness and off balance, not the horrible spinning vertigo and nausea, etc that I had with the first time...And it did not last that long at all...Maybe 3 months total, but mild and was able to do more, faster than before...
I still have some vestibular symptoms off and on now, but I think I always will...Sometimes every few months, sometimes every few years, but it only lasts hrs. to a day at the most and its not severe...
Im sure you will start to feel better soon, it just takes a long time..I sympathize, cos I know exactly what you are going thru..
Take Care
Nancy :cool:

Nancy,
Your pattern of relapse sounds just like mine. I had my first episode four years ago, it started with the room spinning for a minute and then left with constant swaying/movement sensations for six months. It went away and now four years later it came back the same way after a flu, but not as strong. After a little over three months it has pretty much subsided (knock on wood...) and I only really feel it at night in bed, because it is dark, so I leave the t.v. on until I fall asleep. It's good to hear you say it's not as bad as the first time ever... gives me comfort. Thanks!

Just wanted to add that I know what you are going through also.
I have had a lot of relapses lately, having been doing pretty well. It is really hard to be positive when you feel awful. I feel angry and upset and I just want it all to go away FOR GOOD. I want to be able to go out, go to bed late and not suffer for it the next day. I want some specialist to investigate why it is that I got over it and then I keep getting relapses, despite the fact that I eat well, look after myself, keep moving, etc.... I am sick of trying to be positive and philosophical about it. I want it to stop happening. It is affecting a lot of aspects of my life.

Sorry to go on. I just know people here understand. It can make you feel very alone living with this.

Ruth
xxx

You're right. It SUCKS big time, there is nothing positive about having this AT ALL. Sometimes it's good to vent, and say what you are feeling. You don't always have to be positive, because I feel like if all you are is positive, you aren't letting yourself feel what you are really feeling deep down sometimes, which is angry and scared. But once the venting is over, stop to realize that everyone has battles in life, be it inner ear problems, parkinson's disease, cancer, ect... which in reality are deadly when inner ear problems are not. Not to make light of a situation because i wanted to scream and yell when I felt my worse also. And I did scream and yell, but you have to not let it take over your life. I hope that helps. Feel better soon!

thanks joy. you are so right. and other people's problems certainly put it into perspective.
I have found suppressing my anger to be a bad thing. You can only suppress it for so long and then it all comes out! I feel better for letting it out yesterday, but I still want some answers to why this keeps happening. I feel I need to explain it to the people around me who don't always understand you know?

Thanks for listening.

Ruth
xxx

Hi Ruth,

Just popped in and saw you'd popped in. Just wanted to say, if you're after answers why not get a referral to The National - I'm sure you've heard us all talk about it. I'm seen under the neurotologist Rosalyn Davies and would thoroughly recommend her clinic. I know you've been the whole VRT route etc... but it's sometimes worth getting a second opinion. As this happened with a virus, yours has always seemed a clear cut case of VN, but I've been really interested to read of a lot of people who start off that way, definitely have vestibular damage - but, for example, they turn out to have some sort of migraine problem triggered by the VN which can be treated. Also, I recently found out through that clinic that I had a B12 deficiency. I think this must have been making me feel worse, as I (touch wood) have been feeling a lot better since taking B12 supplemenents, along with magnesium and B2 for migraine. I guess all I'm saying is - there is a small chance they could do something more for you as this rubbish keeps repeatedly hitting you, and there's never any harm in a second opinion. Even if they can't do anything major to help, the support you get is great. You should be able to wangle an NHS referral with such a repeated history of problems.

I'm not out of the woods myself, and have learnt to anticipate set backs, but am doing really good at the moment. I actually went shopping this weekend twice in big, packed shops and did ok. Felt tired later but was amazed that it wore me out a little but didn't throw me for six, which is amazing.

Hope you're feeling better soon,

best,

Thanks so much hbep. Glad to hear you are doing well. I have been thinking about getting a referral for some time. Do I need to be referred by an ENT specialist or can I just go to my GP and get referred?
I am starting to wonder if labyrinthitis can somehow trigger menieres. Who knows. :0
Yesterday was a very rough day that's for sure. I would like to go to the National even if all I get is some support and reassurance. I am having great difficulty explaining this stuff to people around me.

Anyhow, good to hear from you.

Ruth
xxx

Hi there Ruth,

Your GP can refer you. As you're probably aware, some people have been lucky enough to get referred outside their catchment area on the NHS, and some not. It often depends on how sympathetic the GP is. Also, I think because of funding arrangements they need to talk to other people and get their permission. I'm hazy on who these other people are, lol. Although mine just said she'd do it as soon as I asked - I'd already seen 2 ENT's and I think the fact I was sobbing at the time I asked, helped - very embarrassing, but I think she got the message that I'd reached the end of my tether. Basically I think they have to be convinced that there isn't the same type of specialist within your catchment area. As there are only a tiny handful (maybe 3) neurotology departments in the UK, most people fall in to this bracket.

Don't know about the menieres. Although I do know the symptoms of menieres and migraine can be interchangeable, they often sort out which condition it is through tests. Due to my persistent probs, last time I went I think they did one of the tests for menieres. Don't worry, it was really basic and not at all traumatic, in fact it made me giggle as it's so mad. You lie down and they put headphones on you and then play weird clicking noises in to one ear, then the other. I remember thinking, who the hell would have though I'd be doing this - it's a bit surreal. I've also had a few hearing tests, as another sign can be a specific type of hearing loss.

One thing they did tell me, which you probably already know, is it's very rare to get spinning vertigo with VN, past the initial attack. I had a night a long, long way into this where every time I closed my eyes I was spinning and spinning. This made them think something else was going on other than the vestibular damage. Although I think people can get spinning vertigo again with VN if they experience a subsequent virus on top of it, (don't quote me on this, not sure.)

If you're thinking menieres it's defiinitely worth going as it could make a big difference to how you treat symptomatic periods. You could be avoiding vestibular suppresants like betahistine, when in fact you could be taking them to suppress what would then be an attack. I think there are also other things they can do - like give you diuretics.

Anyway, Ruth, really, really sorry to hear you are going through the wringer once again. These days I get really sad thinking about all the time I've lost through this. There really are 2 yrs of my life that I can barely remember I was so flipping ill. Even now when I say I'm well, I still know my limitations. I want to travel but am terrified of it, and my stamina is nowhere near where it was - I won't be going on any trecking/adventure holidays in the near future. I am grateful for the recovery I have, but still so saddened by how long it is taking and what I've lost. The fear of a set back and juggling this with work commitments is always the biggest fear, as is not being able to work again for a long period if I had another major set back.

best,

Thanks so, so much hbep. I can't tell you how much I appreciate your help on this.
I shall definitely make an appointment with my GP.
I totally know where you are coming from re: limitations. This is what I find so hard. There was no way 2 years ago I could have done the stuff I'm doing now, but I am still not at the point I want to be either. I cannot work part-time for the rest of my life (although it would be nice!:) ) .

Anyhow,
thanks again and I hope your good spell continues

Ruth
xxx

Hi Tess,

I didn't realize you had brainfog too. From reading your post, it sounds like it has gone away for you. Has it? I was just wondering. Mine is bad in the morning and then seems to subside by late evening.

Hi Suzyisdizzy,

Can you explain what kind of visual symptoms you have? I am going nuts with the way my eyes feel and I see. My family talked me into getting out yesterday and we drove up to an outlet mall about an hour and half away from me. I couldn't even go into the stores. My vision was so strange. It freaks me out more than the dizzy feeling. I left there and put my dark sunglasses on so I could hide my tears from my family and other people. I felt just really awful. I'm so afraid my eyes will not go back to normal.

Take care....Emily I hope your doing better.

Gloria

Hi Gloria
Sorry to hear about your bad shopping trip.
I did have brainfog, badly to start with. Right from the start of this illness I have forced myself to play games on the computer - cards, mahjong, minesweep etc, and I used to have terrible trouble thinking about what I was doing and used to lose so much because I just couldn't think clearly. Now at work it has taken me a long time to be able to work well and effcetively and sometimes I still suffer, but it has largely gone. But, today at work, I had a meeting with someone and the old brain fog was there again, I just could not think at all. She probably wondered what was wrong with me.
I still am nowhere back to normal at work in terms of thinking though, I still have to really think things through - simple things that I should know straight off. I am getting better though.
How are you doing with the vrt, still doing it every day?

Best wishes and take care
Tesss

Hi Tess,

I'm so lucky that I can be at home. I don't know how all of you that have to work do it.

I had brainfog terribly in the beginning. It has gotten slightly better, but I still have it. Some days worse than others....like today. I'm very spacey today. I hate it. I wonder if I'll ever have my brain again.

Does your head feel like there is a brick or cotton between your two ears?

I just wanted to compair myself to you since you have this, seems like, weird eye problem I have.

Yes, I am faithfully doing the vrt everyday. Not sure what I think of it. I guess it is way to early to base my opinion on it. Have you tried some of the exercises I listed. I really like the ball exercises. It makes my eyes follow the ball.

Take care....hope you are having a less symptom free day.

Hi Gloria
Hope you are okay today.
Your description of the brain fog like cotton wool between the ears is so true, it just filled all my head and I just couldn't think. It did go though, gradually over the months. If you are getting clearer days then thats a good sign that it is going. Im sure that I read somewhere on the boards that its a side effect of the brain having to work so hard and coping with the dizzyness/balance issues, other things become less important and brain fog is the end result, so if you are getting clearer days then that means your brain is getting more to grips with things. Hope that makes sense, just ignore it if it doesn't!

I am doing one of the exercises you posted, and I am going to start the rest from tomorrow - I was going to today but after my tests today I think my brain's had enough. I thought I would start with the eyes looking side to side and up and down, and following a finger - which I find really effective I think. I get my BF to do it so I don't quite know where it is going to go. And I pick up a ball occasionally and throw it and juggle, only a bit. I figured that was some sort of vrt too. SO I will let you know how I get on with the others. I think I am ready to start doing some more dealing with balance rather than just the eyes.

I wanted to ask you a question. Ive noticed that if theres an unexpected or loud sudden noise from behind or to the side of me that my eyes blink heavily and very noticeably. This is something new as the eyes have been bothering me more, and I wondered if you have noticed the same thing. Its not all the time. Sometimes while on the phone it bothers me.

Take care and hope you are having a good day
Tesss

Hi Tesss,

I hope your doing good today after your tests yesterday.

Honestly, I have not noticed my eyes blinking rapidly at all; noise or no noise. I've even tried to close them to see if my eyes moved rapidly on there own and they don't. I'm not sure what to think of my rotary chair results. He said my eyes were moving faster than my brain/ears were compensating. Do noises hurt or bother your ears in any way? The phone really doesn't bother me either, but I really don't like to talk on it because there is nothing going on in my life with this crap every day so I don't talk much (other than to you folks on the board). I'm not sure what to make about your eye blinking; I'd mention it to your neuro oto.

I'm glad you said your brainfog went away. I was getting very discourage reading some of the post that it has lasted 4, 6 10 years for some. I know mine has gotten better, but it is not fully gone. I'm feeling a little low today so I am going to try and not read any negative posts today. I enjoy reading the positive ones like Joy, ASLme, Subs and a few others. Somehow after reading their posts, I feel slightly better.

Did your neuro oto give you some VRT exercises?

Take care,
Gloria

Hi Gloria
How are you. I haven't posted much as my family were staying but I was thinking of you and wondering how you are. Ive been thinking and I feel my symptoms are very similar to yours now, the eyes are definately a big problem and I feel that my eyes are causing any other problems I have. So this has changed from earlier in the illness and the change happened when I got my glasses. I also read that you are having problems with tinnitus - well when I feel worse I have tinnitus also. Ive had a variable weekend, sometimes feeling good and other times feeling really bad, eg going into a big shopping centre after a long 2 hr drive (me passenger) really did me in!

When I went for tests they didn't give me any vrt, but I am waiting for an appointment with someone who can help. I have done the exercises a few times and try to also do other stuff that has stooping bending movements. I am on holiday from work and I feel that being away from the computer all day every day really helps. I am going to Italy on Thursday, first holiday since this happened, I am so looking forward to it.
Anyway, let me know how you are and hoping that you are having a better day
Best wishes
Tesss xxx

Hi Tesss,

All of you traveling are so brave. My husband wanted to go to the beach, but I declined. I feel like doing nothing. It will only depress me more trying to enjoy the beach, but feeling like this. Hence, I'd just rather not go. I do hope you have a wonderful time.

The eyes and spacey feeling bother me the most, but yesterday, my ears felt funky and the tinnitus seemed so load all day yesterday. I really don't know what is worse. I just really wish I could have my old life back. I'd give up everything I own to have it back.

Sorry, I sound depressing today. I'm just really tired of living like this.

I do hope you have a wonderful time on your trip and I'm praying your symptoms stay under control.

Take care,
Gloria

Gloria
I do feel sorry for you. I know what its like to be in this hell hole and it is impossible to get out of it. The only reason I can travel is that I have got a lot better than I was. I still feel like I am suffering a lot but I am able to do much more than I was back at the start. I am nervous of travelling and I think I will spend a lot of time on holiday just taking it easy rather than the action packed holidays I am used to. When you start feeling better you will start to do more stuff and you will start to get your life back. I do find it really hard aswell - we booked this holiday in January otherwise we probably wouldn't have gone.

Do you have an appointment to go back to the neuro for check ups or more vrt?
Can you go out to the movies or maybe go out for a quiet early dinner or something like that? I know you go out for walks but it might help if you are doing something not for the illness/vrt but something that you enjoy. Sorry if you have heard all this before, I feel quite helpless but just want to help.

Sending you a big hug, take care
Tesss xxx

Hi Tesss,

Sorry I sounded so bad. Mornings are the worst for me and I probably shouldn't post in the morning, but it seems like that is when I need all of you the most.

I hope you have a great time in Italy. I'll be praying for a good flight for you. Take those ear plugs Scott mentioned. I did that when I drove through the mountains and it really helped maintain a level of pressure.

I don't go back to the neuro oto until October. I've been faithfully doing the VRT. I tried the migraine and low-salt diet for 2 weeks then I experimented and ate some of the triggers. Nothing. No difference. I don't think diet has anything to do with it for me. It didn't bother me before this and it all started after that ear infection so I don't buy MAV. I think it is vestibular damage. I'll keep at the vrt.

I don't really enjoy eating out, not so much because of the dizziness, but rather the vision. I just feel I don't see right and it makes me miserable. It seems like it is more when I am inside places (buildings). I have gone to the movies several times and seem to enjoy it, except my neck hurts after I leave. I am getting sick of movies. All I've been doing is renting movies for the past 8 months. (By the way, What about Bob with Bill Murray and Richard Dryfuss is histerical. I feel like him sometimes with this ear stuff.) I do like to do outdoor stuff because my ears and head don't seem to bother me as much. We've gone to the zoo, parks, and we have a pool so I try to relax outside a lot. Lying on the raft in the water seems to make me feel better too. You'd think I'd feel dizzy.

Anyway, I plan to try and not get on this computer in the morning. I am going to fight it and try and go to this neat animal park I found about an hour away from me. It will be something I can do with my 4 year old.

Thanks for the hug, I really need those sometimes.
Gloria