:wave:
Hi. My name is Shay and I am new to these boards. I'd like to share
my story and hope that it may help another new person. First of all,
thank you all for sharing your experiences. You all have made this difficult
illness better for me. Many times I've panicked over a symptom only to
read the boards and realize that my sympton is a common one.
I have had Viral Labs since last April. It's been a long, difficult year.
I am accustomed to always having good health so I have fought this
'tooth & nail'. I had my first major vertigo attack at a local mall.
I was with a friend and we were dining in the food court. My friend pushed the table back when she rose and I screamed. The world just turned topsy-turvy, spinned. I was assulted visually by every motion and I could barely walk.
The walk back to the upper level to the car was a nightmare. I thought that
I was suffering a stroke.
I went to a specialist in inner-ears and he did not detect a baterial infection.
He started me on a diuretic and Allegra. I tired Anti-Vert and became a
Zombie. Subsequent tests for hearing, MRI, etc. were normal.
My bigest problem to date is my balance, particularly with walking. I
tend to stumble and lurch when assulted with visual stimili. I gradually
began using a cane when going out. Otherwise, I would find myself
being pulled over to my right side.
I've had BPV since I was a teenager. I am now doing the Brandt-Baroff
exercises which I detest.
The vertigo has subsided somewhat - I no longer go into a panic mode just
by having my purse strap fall off my shoulder and or someone coming up behind me. But the mild vertigo and imbalance persist. And then, there's the
stiff neck.
I think the Emmsbob's (sic) testimony the other day explained my symptoms
perfectly. No one can understand this 'invisible' disease.
Thank you for letting me share. Now that I am registered I hope to
be able to communicate with you all and answer any questions you may have.
One final point: Proper Diet & Exercise do really help!! Salt & sugar really
do make me worse. Shay

Hi Shay,
Welcome to the boards, I too am new to them, and these people have helped me out so much. I have a question for you, since you have had this for so long. Do you have good days and bad days? And do you think ( if you have them) that allergies plays any part of feeling so bad?

Hi Shay,

Welcome to the Inner Ear Boards. Yes, it is a reassuring feeling to know that you are not the only person dealing with disequilibrium problems. I have been dealing with an imbalance issue for 10 years (I just turned 40). If you do a search on my (old) user name (Wowwweee) in the archives for Inner Ear, you will find a post called Dizziness from Rochester, NY - It Stinks. That's me and my story.

Sorry you're fighting the same fight we all are. I'm glad to know that your tests came back healthy - that is so important and something to really be blessed about. It can be frustrating though, to be told you're healthy and to still deal with this crapola.

Everyone is different on here, so people respond differently to the same kinds of treatment and medications, depending on their situation/condition. Some of us on here have the same symptoms, but have been diagnosed with different conditions. And some of us have been misdiagnosed, or told we have one thing, then another, etc. The thing about disequilibrium is that is can mimic so many things - so what one person may describe as Labs may be MAV to another.

During really rough times, I used to be a frequent poster. As my symptoms leveled to a tolerable place, I would visit but not post as much. Lately I'm back here because my symptoms and sensations have been more bothersome in the past month than they have been in the past 14 months, and I find it feels better to participate a little more.

You hit the nail on the head when you mentioned being jumpy just because your purse strap falls off your shoulder. In reading some of these posts, they could be ME. When my symptoms are more bothersome, I am more jumpy. If the wind blows on me when my symptoms are acting up, THAT bothers me. Would you believe even wearing my hair in a pony tail bothers me? The weight on my head can 'throw me off'....for someone else who has been there, it doesn't sound strange at all.

I read some of these posts and just nod my head in agreement a lot.

I hope you find something useful in my other posts. So far, next to Quincy, I am the longest sufferer of disequilibrium on these Boards. Not a title I wish to be known for, let me tell you!

Wishing you a lovely day.

Welcome Shay... :) I hope you will find comfort in these boards...I certainly have and as you will have read have had Viral Lab (after effects of) for 18mths.

Let me ask...did you have balance testing? Do you think in any way your BPPV may be linked as in is ther a possibility this may be the cause of your illness or hindering your recovery from Lab?

You said my post rang true for you as in my symptoms. Do you find things like dark places, pubs, restaurants, focussing on people's faces, crossing roads bad for you?

Have you had cognitive probs with this? Memory probs, being vacant? Fatigue??

Have you been referred for VRT???

I hope these boards will be a source of strenth for you just as they are for me, they have kept me going through incredibly dark days and just knowing people understand and are there for me...and know what havoc this 'invisible' illness can play...

xxx

Hey 'Bobs,

I just want you to know that your sensations and symptoms are SO parallel to mine. I was reading an earlier post from you, and just kept smiling as I read on down because I could have written that myself.

I'm glad you're still poking around on here, you always give such good advice and ask such important questions.

Wishing you a wonderful day. :)

Hi wowwweeee...Agh! I sometimes panic and think theyve got it all wrong and that ive infact got MAV!!! But pretty certain I havent and I guess that'll get looked into if I dont recover from VRT...we are not there yet. Do you think MAV damaged the vestibular system for you and that is why your symptoms are so consistent with inner ear???

Bless you for saying what you did...these boards are my saviour and I do my best to help others going through this nightmare as at the start particularly, I felt so lost. I feel a real affinity (spelling?) with fellow inner ear/MAV sufferers as noone can know what this feels like unless going through it yourself...

xxx

Hey 'Bobs,

I know how you feel about thinking you are misdiagnosed. I go through that, too. But then I think that if I AM misdiagnosed, the treatment seems to be relatively the same for these similar conditions - meaning, VRT (or related) therapy, perhaps some sort of suppressant medication, anxiety alleviation, and inner ear testing to rule out atypical conditions. It would be nice to know EXACTLY what I have, I may never know.

I personally haven't done a lot of research or reading about vestibular problems, (ie., inner ear or vestibular damage). I was too overwhelmed in the beginning, and too tired (emotionally drained) in later years to give this avenue much thought. There really isn't much they can do anyway (my opinion only) - it just takes time for anything like auto immune issues or damage conditions to heal. I think for me, just by continuing to push past and through, and maintain a normal lifestyle as much as I can has been the key to my feeling and doing better. I may be way off base with this way of thinking. I just got to a point after all the MDs and all the testing that I was going to accept these symptoms and press on despite them. It didn't mean give up - but I was just too overwhelmed with all the avenues that I could try and all the things that I could have, many of which would go undetected or misdiagnosed initially anyway - so once I knew I was healthy, I focused on that. Even after all this time, I still get overwhelmed with all the possibilities and all the what if it's really this instead.....

I'm off of here for tonight! Big hug.

Know just what you are saying..the only thing with MAV is there are meds...as in VRt isnt always that helpful and meds are the answer. BUT in many cases as Ive said MAV can cause vestibular damage, so in effectw e have the same prob or maybe. Have you ever tried VRT? I forget. If not it may be a thought.

Guess if the MAV meds worked for you it must be MAV...

Off here also. Hugs too xxx

Welcome Shay,

I've been dizzy 24/7 for the past 2 1/2 years and have no idea what's causing it. I'm pretty sure though that it's inner ear.

Wowwweee, Emsybobs,

I understand exactly what your saying. I never was diagnosed (had theories though)after seeing so many doctors. Now I moved far away from all the specialist (can't even get a family doctor) and I kind of resigned myself to the fact that I may never know whats wrong with me and try to live the best I can with my condition and hope and pray it never gets worse. But other times I think I'm copping out and should not accept this!! There must be a way out of this!!! I think that the 2 things that are left for me is VRT and MAV meds, I don't want to try antidepressants!!!! I will start with VRT I'm not sure if I should start right now or wait for the end of the school year (when I'm sure I'll not be working). :))

Good morning all! Yes, my main problem with my balance seems to stem from visual
stimili. And I do belive that my long-term BPV has played a role. I haven't had
balance tests done. I need to do this. Since I've always been 'healthy as a horse'
and rarely see doctors I've been reluctant to have a series of tests done - believing
that this would be short lived. I guess I will have to rethink this now.
I do find that my symptoms get much worse with low pressure systems: rainy days
can really make it worse. And DC has experienced one low pressure system after
another this past year. Today is sunny and dry and I am walking better.
My ears will crackle and pop with bad weather and my head feels full of cotton.
I have difficulty in stores and in crowds. I found that everytime I would go to our
staff cafteria I would really begin to stagger and lurch. Then I realized that it was
the checkered floor tile pattern. Just looking at it threw my brain in a tizzy. Who
can understand this oddness but us? Emmysbobs stated it so well in her message!!
Keeping active is hard for me - I want to spend my weekends as a couch potato -
but if I do I pay dearly for it on Monday. Why does just a short period of inactivity
put us right back to day one??
Emysbob: I will write you a longer message later. Please continue to be strong
and know that I am praying for you.
I'll reread these messages later and try to respond to all queries.
And yes, I do understand how just a ponytail can be upsetting. Shay

Hi Shay, you sound v similar to me dizzy wise...I also get the staggering lurching thing...Been shopping today (aghhgghhhh) :eek: and now feel down cos it was awful!!! Too many people and I get so confused, drunk, world looks WEIRD!!!

Keep telling myself you did it, you did well but its hard...Have they def ruled out that you dont have BPPV now? You know that BPPV can CAUSE vestibular damage the same as lab'itis - this may have happened to you....tried VRT? You must! Hugs xxx