hi all

i'm a new member in the board. when I started having the severe vertigo after a bad cold virus, it felt very bizarre!!! and thought i'm the only unfortunate person to suffer like this...vertigo, dizziness,stiffness & numbness of the neck and left shoulder and arm, whole body fatigue, heaviness of the limbs..etc I did full body checkup including CT scan & MRI for the brain and caloric and hearing tests ane the weird thing is that every test appears NORMAL!!! thanks god for that of course, but its frustrating.
i've been suffering for the last three months. I'm frustrated because
it caught me in a very crucial time as I was just about to start writing my Phd thesis in Plant systematics and Phylogeny. It impaired me totatlly as i am not able to read or write from the pain neck and dizziness. I've been to many specialists and the last diagnosis is Vestibular Neuritis. I still have an appoinment with a neurologist on Monday, 10th Oct 2005 and doubt he will give me any treatment!? is there a treatment or is this condition curable?? and how long does it take? I started Acupuncture last week and still on it! the chinese Doctor said I have a spine inflamation after a cold virus...little releif so far...

regards,
Al-Farsi :confused:

Welcome to the club that we all wish no one had to join! :)

I share the same diagnosis as you - but just wanted to let you know that before all of the results of all the testing came back, my doctor told me that they could all come back normal... which wouldn't necessarily mean I did not sustain damage to the vestibular system. He said many times the damage just doesn't show up, but all the symptoms are still there - and suggested that no matter what, I proceed with treatment as dictated by my symptoms.

You will read of so many other's experiences on this board - that alone was a lifesaver for me! I realized I wasn't alone in my horrible misery, and I was reminded that this condition, for some of us, will unfortunately take time to resolve.

Have any of the doctors or healthcare providers suggested vestibular rehabilitation to you yet? I'm convinced that VRT has helped me progress to the point that I am now back to work, though not feeling totally "normal," at least able to function in almost every capacity as I did prior to the onset of VN. Take a look at the top "sticky" on this web site, and you'll find lots of info on VRT - or do a search on the internet. (Walking on uneven surfaces and up and down hills has really seemed to speed my progress along, too, by the way.)

So sorry that this has come at such an inopportune time for you and that you find yourself in this boat that we all wish we could jump out of, but at least we are not alone!!!!

Best of luck to you in your journey through VN.... we're all here walking through it with you!

As DB rightly states, there is no timeframe or definitive treatment for VN. I have it too and have had it a fair while. The general concensus is not to take vestibular suppressant medication, to keep active and to get a referral for VRT - vestibular Rehab therapy.

Everyone is different so noone can say when you will recover. Most get over it in a few months, some have it years, some to a degree, forever. But getting the right help, some psychological support, doing VRT early and persistently, will make sure you are on the right track.

xxx

thank you "dizzyblond" and "crazylabyrinth" for your response and support. One of the neurologists told me about the VRT but he said we don't have any specialists here in my country, but he gave alist of exercises for VR. By the way, I'm from Oman, in the middle east! but doing my PhD in South Africa, Cape Town. I had to come back home because of this condition in August after sufferring for the whole month of July there in south Africa. It hit me very hard at the begining with a severe vertigo and my main problem was the extreme cold weather (as apposed to extreme heat in Oman!!!), i couldn't cope with the severity of the winter which in my opinion aggravated my condition. I find staying in a warm environment helped me a lot. my main problem now is the stiffness in the neck along the sppine that is preventing me from performing well. If i do any exercise , like reading for example,the stifness spreads through the whole vertebral column and all my body aches afterwards??? I'm also swaying from right to left when walking and the stiffness forces me to sway back and forth. So, I feel i'm being pulled in 4 directions at the same time.....is this part of VN symptoms!!! has any one experienced such BIZARRE feelings!!??

Oh, yes, the symptoms are absolutely horrible.... Hopefully you have experienced the worst part of VN, and are now going to begin to recover. Just remember, it may take quite some time - I think I read somewhere on this board that the average rate of recovery of people here on this board was something like 13-14 months. I remember back to where I was just 6 months ago - I felt very, very bad, even just sitting perfectly still was terrible. The only relief I could find was to go to sleep - that was the only way I could escape from the spinny feeling, disequilibrium and nauseating sickness that was unrelenting.

Do try to begin some of the simple vestibular rehabilitation exercises that were suggested to you (you can find many more on the internet, too). You will probably find that they make you feel even worse, but as you read over the posts from all of your fellow vestibular disorder sufferers on this board, you'll discover what we all had to learn by experience - that you actually have to feel the bad affect of the exercises in order to begin to get better - it lets you know that your brain is being challenged to learn how to compensate for the inner ear damage.

How amazing that we are from all over the world, literally! We do hope your visit with the neurologist is helpful in some way and that you'll soon be able to get back to your schooling in South Africa, but be prepared to not get many more answers than what you've already received. You'll notice that many on this board did get some helpful answers when they visited a neurotologist.... but many communities and medical plans do not have such specialists. For those of us that can't be seen by those special doctors or in those specialized balance centers, we find much help in listening to those on this board who have! (Read some posts by "Subs" - here is a person who has thoroughly researched vestibular disorders and has a wealth of information we all benefit from!!!)

Best of luck as you try to continue on in spite of the swaying, spinning and horrible sensations of VN. (By the way, I developed severe headaches with the VN that I had never experienced before - but I'm convinced that it was due to the increase in muscle tension that was brought on by trying to sit very, very still (any movement made me so ill).... plus, when you feel so poorly 24 hours a day, it is very hard to ever feel relaxed, which adds to the whole body muscle tension. The headaches lessened and lessened as I continued to improve. As CL mentioned, please be careful with the vestibular suppresants, which some drs. will try to prescribe. But they only mask the symptoms, and hinder compensation, as I found out the hard way.

Again, good luck - we hope the week will be less "rocky" and that you'll soon begin to feel some improvement!

Hi dizzyblond,

I didn't realize you had headaches with your VN. I've had horrible headaches so bad I felt as if someone was beating me in the head. They have really settled down as I am entering my 10th month but still have them mildly. I never got a confirmed diagnosis from my nuero oto or any of the other specialist I saw but always believed in my case it is VN.

Interesting about the headache with you. I kept researching MAV but never really thought it fit my history with this (I aquired this headmonster after an ear infection/virus.)

Thanks for sharing.
Gloria

Hi Gloria,

Yes, when I was at my worst point with the VN, the headaches were absolutely horrendous. I remember in particular the days before my MRI results came in - my head hurt SOOOOOOOOOOOO much, and I was just laying on the couch, really unable to do anything due to both the spinning, disequilibrium and a headache that was unlike anything I'd ever experienced. My husband told me later that he was certain I must have a brain tumor because of the way I described the pain - it was like someone took a spear and shoved it through my temples!!!! No amount of any pain reliever could take them away.

I began to notice a pattern with this new headache - they came whenever I was vestibularly "overloading" - when the vestibular symptoms were especially bad. I am a jaw-clencher, have TMJ, and know that I carry a lot of my stress in my shoulders, neck and head.... so I began to really wonder if being so disabled with all of the misery of the VN was just taking my muscle tension and pain to a new level, and began to treat myself with hot packs and massage - going in a spa is nice, too. Sure enough, with that palliative sort of treatment, along with the continued working on the VRT, the headaches decreased to the point where, at this point, I seldom get that particular type of headache anymore.

I have a history of migraine, but never suspected that that was the cause of my problems. And, as well, the headaches were in the same region of my head where my typical tension headaches are - just far more intense and painful. (An ENG confirmed the vestibular damage, so I knew it was an inner ear issue, not MAV. I, too, came down with it several weeks after a simple head cold!) Though, perhaps for many everything overlaps.... we are certainly complex beings, aren't we!!!

Sorry for the long post - this is probably more information than you need to know ;), but if you're anything like me, just hearing about everyone else's experiences really helps me to get my own symptoms into perspective!

So glad to hear that your headaches have settled down a bit. Do they at all coincide with the type of vestibular symptoms you have/don't have? Oh, what a year this has been for you and me!!! My sympt. started last January, though I kept them at bay with vest. suppresants till I finally started in earnest to find out what was going on (April). That's when I became totally disabled and housebound for a good 2 months. HORRIBLE!!!!!!!!!!! :eek:

It feels so wonderful to be able to now have a semblance of normal life - I hope you are experiencing the same thing, too. I remember reading posts on this board, weeping with misery, but so glad to be able to read that people actually got better from this living hell on earth!!!!!!! Maybe we'll be those "givers of hope" to those who are convinced there will not be any sort of decent life after VN/labs!!!!!

Hope you're having a good day today!!!!!
Take care!
Robin

Hi Robin,

I'm so glad you told me about your headaches. I was the same way for the first 4 months, the headaches where so bad I laid on the couch with ice packs on my head. They seemed to be the most severe on the top of my head going down to my ears. I remember feeling like someone was hammering a railroad screw (or bolt) right in the top of my head and slitting my skull in two. I have such an awful memory of that pain that I can't get out of my head. I never though I had a brain tumor for several reasons being that my sister passed away from a brain tumor 4 years ago and her symptoms were very different than mine (she never even had a headache) and the likely hood of siblings both having a brain tumor is very rare. Secondly, mine started after an ear infection/virus so I just knew it had to be related and I had way too many ear symptoms to be anything else. I never had a migraine before this and rarely ever got headaches so I know it has to be vestibular. However, I did worry and still worry myself to death wondering if I will fully recover and I think that the stress and anxiety is far worse than what we actually have.

Funny you say heat helped yours as it made mine feel worse and so I used cold packs. I definitely agree with the pain meds. Nothing and I mean nothing did and still don't help with the headaches. The good news is the last months they have hardly been there and when it is at it's worst, I can pretty much handle the head pain. I also had a tremendous amount of stabbing pain in my temples too. That has also settled. It also hurt in the back of my head too and that has totally gone away.

I'm so glad you shared the headache information. I never really believed I had MAV but still kind of thought there could be a chance maybe I developed it. I haven't had an ENG yet which will probably be one of my next text the neuro oto will do, but I did have the rotary chair test and it showed that my eyes where moving slightly faster than my brain and ears where compensating. I have goofy vision from all this and really hope that goes away because it is depressing me to no end.

Sounds like we are both healing and it was nice to hear that someone else who had headaches is going away as they get better too.

Thanks again for chatting. By the way I never had spinning or moving vertigo. Mine was always an off and spacey feeling. Not quite right, maybe what some call a swimmy head. Mine also started in January. I had the infection on January 2nd and about two weeks later, this crap started.

Take care and I'm hoping you are having a better day today.
Gloria

Hi Al-Farsi,

Sounds like you and I are in the same boat. I got hit during my PhD. In the end I lost about 1 year. It goes away eventually. I had (and still do to some degree) all the aching neck and shoulders you mentioned. A real nuisance. Try using a tennis ball and roll it up and down your back (put the tennis ball between you and a wall). This works well if there's no one around to give you a massage. Hang in there...it will sort itself out in the end and you'll get through the PhD too.

Best...Scott :cool:

Hi Gloria,
I just had to laugh as I read the few posts we've been sending back and forth - there I was, saying how happy I am to be feeling so much better, and of course, on the heels of such a comment, wouldn't you know that today I woke up feeling more imbalanced than I have in several weeks and ended up having a really OFF day. Could be because I feel like a cold is coming on (or else it's allergies), and it seems that every PMS week of the month finds me decompensating some. Sigh.... just when you get used to feeling a little bit better, you are reminded that you really have something wrong, and you feel like you've taken 3 steps back.

I was interested in reading about your onset of this vest. stuff - I didn't have much in terms of hard core vertigo, either - only one, 30 sec. episode of true "upside down" vertigo. But I experienced that off, spacey disequilibrium for what I remember to be a couple of weeks before that day - and every day since then, too! I guess there is no one specific pattern to this stuff - we all experience it in such individual ways.

You mentioned that you haven't had an ENG yet, though you did show some other abnormalities with the rotary chair - did any of your drs. send you to VRT? If so, have you found it to be helpful or have you found that it's not made much difference in your condition?

I am so sad to hear that you lost your sister - I'm sure that must have been a really difficult time. And you are so right about a brain tumor's presenting symptoms are something much different than severe headaches. Actually, I was a little more fearful of something like an aneurysm, since that's what my dad passed away from. His main symptom was a different, excruciating headache. (There are so many different things that can go wrong with our bodies, from head to toe, that it's amazing any one of us can function in relatively good health!) (And isn't it also amazing how something going wrong in such a tiny area of our body - like the inner ear - can so affect every other part of us!!!)

I do hope you have had a decent day today - the progress seems so slow sometimes, but we can definitely look back and remember where we were 4 months ago and KNOW we've made some sort of recovery!!!

Take care,
Robin

Hi Robin,

I guess I spoke too soon because my headaches have been worst the past couple days. Not as bad as in the beginning but I really thought they were coming to an end.

I do vrt at home which was given to me by my neuro oto. I'm not sure if they help or not. I do them. My dizziness is much less, but not my other symptoms. My vision is really goofed up and it bothers me to no end. Do you do vrt? Do you think it has helped you?

I'm so sorry about your father. I lost mine a few years before my sister but that was due to age and the fact he didn't really take good care of his body. It was much harder to deal with my sisters. I would imagine you'd have a headache with an anyerism, but to be honest I don't think I ever thought about that. I read an article back in about April from I think it was Cosmopolitian on Sharon Stone who had surgery for an anyerism and she said she didn't feel herself for at least 7 months. I had thought to myself that ok in 7 months, I'll feel better. Well here I am battling this for about 10 months and while I noticed changes for the better, I still feel very ill. I would never have imagine this would go on for this long.

I sure hope your not coming down with a cold. They are the worst with this stuff. I had 2 of them in the month of September thanks to my 4 year old. I don't really notice any difference in my symptoms when it is that time of the month so I don't think that plays a part with me other than just feeling the normal monthly yuckies on top of this stuff.

Take care and I hope you feel better today.
Gloria

Hi Gloria,
I'm hoping that as the past few days have gone by that you've seen your headaches lessen in severity. Can you believe how for granted we took our good health before all this hit? I remember watching people going in and out of stores (which were some of the most difficult places for me to be), seeing them laughing, talking, shopping.... while there I was, barely hanging onto the cart, certain I was going to pass out!!! I was so jealous, and realized how much of what we accept as normal life in terms of health is really a gift!

Despite my rough couple of days, I kept up the high speed schedule (even attended a big restuarant suppliers' convention - talk about some excellent VRT - up and down aisle after aisle, looking left, looking right - tons of people and lots of noise! I was shocked that I was able to go out that evening, even on top of it all!)

I was referred to a physical therapist for VRT once I received my diagnosis, though it was clear that he didn't have the extent of training that a specialist at a balance center would have. I knew more than he did after I began my research! He was actually better prepared to treat a host of balance problems, like the gen. dizziness that comes with age, MS, strokes, etc. He did do the Epley on me to begin with, just in case (no help in my sympt.), but once that didn't work, he didn't know much about uncompensated VN/Labs, and based alot of his treatment on the info that I brought in!

Fortunately, with the help of this board and the info present here, it was OK - I followed a lot of the suggestions from everyone else's posts, and it must have made a difference - I am so much better than I was at the beginning of summer.

Now that I'm feeling better (not normal, by any means, but definitely better!), I find myself totally forgetting to do the VRT and I wonder if that's OK. Maybe because I am now much more active in daily activities, am now gardening, walking up and down hills (which was horrendous for me early on), and just doing my everyday routine, I am continuing to keep the brain pushed and compensating - I don't know :) - I'm just so thankful to be able to feel like I'm going to be a normal participant in life again sometime in the future!!!

Have a great weekend, and enjoy that sweet 4 year old of yours! (Oh, how I miss those days now that my kids are so much bigger!!!!) Those days flew by faster than I could have even imagined they would!!

XO ~ Robin

Robin,

Boy did you hit the nail right on the head with this one.....I am so jealous of others who don't have the misfortune of dealing with this crazy head crap. I sit in my car sometimes crying before I go into the store because I see other people going in and out and talking and yes, laughing. I don't think I have truly laughed in 11 months. I feel so foolish for taking my health for granted so much. I'd do or give anything to have back the life I once knew.

My headache is a little better today despite all my other symptoms. I can't except living like this and just fight myself everyday. When I think I can handle it and have a good day or two (attitude wise) my symptoms just increase in severity and I break down again emotionally. I'm beginning to believe I will never be like my old self and am really struggling to accept this. I just hate the tinnitus so much and it is always there and never goes away. I just wonder what could have went wrong.

It sounds like you feel you've really improved. That is wonderful. I think the activities you are doing will benefit you the same as the results of vrt so if you miss doing them sometimes then I don't think it is that big of a deal if you are staying active. I've tried everything out there and really don't know what else to do. I know I'm better than 10 months ago, but really feel, I'm just stuck in my current state and really wonder if I will improve anymore.

It has been tough with my 4 year old and I feel I have missed the last year of his life. I can't believe how stupid I was to think I needed to get the dishes done or the floor sweep before taking that extra minute out for him before all this started. I'd give anything to have that time back.

Keep up what you have been doing, it sounds as if it is working for you.

Take care - Gloria