Question for Wowwweee and others - Inner Ear Disorders Message Board

LightheadedBob · 10-07-2003, 05:23 AM

Long time sufferer; new poster. Hope you're feeling stable today. I've dealt with my lightheadedness for nearly 12 years now and am going through a particularly nasty bout right now. My question(s):
* Wowwweee, in a recent post Hbep mentioned that you had supplied a list of reputable dizziness centers. I've searched the archives for it, but can't find it. Could you list them again?
* What type physicians have you found to be the most informed and helpful?
* What are the coping mechanisms you've found to be the most effective when dealing with your dizziness/lightheadedness?
* How do your family/friends treat your complaints? Are they truly sympathetic or somewhat dismissive?

May God help us all!

willsmom · 10-07-2003, 08:55 AM

Hey Bob,

Sorry to hear that you are having a bit of a horrid spell!! I know that one only two well. For me I have had this darn thing for the past 2 and a half years.

To answer your questions:

The best people to see about inner ear issues are neurotologists, but maybe as a first base an ENT doctor. It very much depends on where you live. In the UK there are only two balance centres as such with neurotologists - so few and far between.

But a referal to an audiology dept is where the tests for vestibular dysfunction are carried out - probably get that straight form your doc. Also they can do the VRT etc.

As for coping with it - well that is still tough for me - some days easier than others. But the advice always seems bto be relax and accept the feelings no matter how odd. Be reassured that it is nothing serious and try to carry on as much as possible. This is soooo easy to do when the symptoms are mild but darn hard when they are intense.

Family reactions to the dizzyness. Well my dh is geneerally pretty good and then more recenetly he finds it annoying. He has said on occasion - oh come think your way out of it!!, how can you be this dizzy - you look fine!, this effects all of us not just you, its annoying that we cannot go on holiday.....I guess you are getting the idea now. I frankly don not particularily care what any one else thinks cause they have never experinced it themselves. Also its darn hard to be sympathetic when it goes on and on and on and on and on!! Frnakly my own patience would probably have worn a little thin too. But like you I have had patches of feeling normal maybe with very slight symptoms so you just have to plod on and think that will come again.

I think a big component to this is getting a decent diagnosis - I was going to go to the neurotologist in London but am wondering if I will - as I can get the same tests done at the audiology department.

You just gotta try to keep your chin up and plod on - easier said than done I KNOW!!!!

Oh do you have imbalance as well as the dizzies?

hbep · 10-07-2003, 09:00 AM

Hi there,

I know Wowweee has a problem getting on line at work so may not answer. Sorry to but in, this will be a quick one as I am rushing out, but the specialist to see is a neurotologist. Try putting Subs in to the search engine, on a number of occasions recently he has given the web address that lists neurotologists near you. Also, did you try putting Wowweee in to name search - it should bring up all her posts. Maybe the search engine is acting up.

Also if you put the words 'Which Specialist to see' in to the search, it will bring up a topic which contains a description of neuro otologsts, very helpful, explains the difference btwn them and ENT's etc...

Sorry, have to dash, but hope this helps,

best,

hbep.

LightheadedBob · 10-07-2003, 09:08 AM

Willsmom - Thanks for your post. Reading that many others are experiencing the same thing is both comforting and disturbing. I guess there's strength in numbers, but it seems that this is surely one of those conditions for which there's no clear-cut diagnosis or solution.

My story is kind of long and convoluted. I'd characterize my primary symptom as "lightheadedness," but experience waves of imbalance on a very infrequent basis. Again, I've had this for some time and have seen just about every specialist in the related areas. I've spent the last 8 years on every SSRI known to mankind (Prozac, Zoloft, Paxil...) for what my general physician thought was anxiety attacks. I WAS diagnosed with BPPV at one point, but after going to 2 PT appointments and getting no relief, I became frustrated and discontinued. I went to a neurologist who specializes in dizziness impairments and was given a whole host of tests. His conclusion: I don't have BPPV; go see a psychiatrist. I lived with that and - still - continued the SSRIs. Recently, I've become convinced that there just MUST be something wrong with my balance system: there are too many physical activities that bring on my sensations. So, I've recontacted the doc who originally diagnosed me with BPPV and have made an appointment to resume treatment and PT. Maybe I just need to stick it out longer than before.

LightheadedBob · 10-07-2003, 09:13 AM

Hbep - thanks for your help; it did the trick! I'll see if I can find any neurotologists in my area. If not, I'll go to them!