meniere's disease?

Just been dx with meniere's disease or syndrome as some seem to call it. Just been given Betahitine 8 mg taking 2 tablets 3 times a day, helped abit but caused me bad headache on top but not spinning as much now.

Had problems with loss of hearing and tinnitus and now bouts of vertigo and pressure in the ear like a bubbling lie you get when you been on a plane, seeing ENT for 2nd time on Feb 2nd.

Is there anything they can do for this. I also have fibromyalgia and MPS upset to have something else dx.

samantha

[uk2]

bumping up so i can get an answer

[uk2]

please somebody answer me

[Nancy T]

Hi uk2--I am by no means an expert on Meniere's, but I believe the MOST COMMON and basic treatment is a low-salt diet and use of a diuretic to keep the level of body fluids evened out over the day (because, traditionally at least, Meniere's is considered a type of endolymphatic hydrops and thus is affected by level of body fluids--as you may know, the inner ear is filled with fluid).

I'm not sure whether I can successfully post a link here, but please check out the Meniere's and hydrops information at dizziness-and-balance *******, Dr. Tim Hain's detailed and authoritative Web site. You can also Google Meniere's disease or endolymphatic hydrops and read about suggestions for low-salt diets, what kinds of diuretics are typically used, etc.

Main thing is to consult with your doctor and see what they recommend. If they are telling you that you have Meniere's and they haven't mentioned a low-salt diet and diuretic, umm, then I think you haven't seen a real ear doctor and need to find one!

Please be aware that many nonspecialist doctors (non-ENTs) will diagnose just about any kind of dizziness and hearing loss as Meniere's, when in fact it may NOT be Meniere's. You need to see an ear specialist.

There are also a number of Meniere's disease forums where you can ask questions and get answers from people with lots of experience in this disease--the Yahoo Meniere's Discussion Group is full of very knowledgeable people.

Good luck,
Nancy T.

[Nancy T]

Sorry, I just noticed in your post that you DID see an ENT.

[uk2]

Thanks so  much for your advise, ive seen a ENT last year and then missed the follow up appointment, in that appointment he mentioned meniere's then and booked me in for CT which i had on that day and hearing test which showed a loss of hearing that i was only picking up high pitch sounds and not low ones. i was booked for a ENG to confirm then was due back in august but my fibromyalgia stopped me from going and had to be re refered till the 2nd of feb and still now i wont have the ENG till 31st of march.

I can cope with the other sx but the pain in the ear and the sudden vertigo worries me if i'm out or driving and i have 3 kids and am a singal mum.

I've not heard about the diuertic so may ask my gp or would i ask the ENT? i've heard of the low salt and sugar and to avoid caffine and alcohol which i do anyway and the salt and sugar as careful with diet due to my fibro maybe i will give this ago and i'll go and search the net i did find menieres info by google but no official site but i'll keep searching.

If its not menireres disease what could it be?

sam

[Nancy T]

Hi Sam. You could probably ask your regular doctor to prescribe a diuretic as a trial, since those are common medications used for high blood pressure and other reasons. You would have to make sure it does not interfere with any other medications or medical conditions that you have. (Sorry about the fibro; my mom has it bad, and it's no picnic, I know.) Then you could tell the ENT whether it helped or not, which would be a good clue.

Lots of things can cause dizziness, hearing loss, ear pain, etc., but it sounds like your ENT may be on the right track--your symptoms and the low-frequency hearing loss do sound very suggestive of Meniere's. Migraine and autoimmune inner ear disease (AIED) are, I think, thought to have some overlap with Meniere's, and the experts don't really seem sure exactly what Meniere's is anymore (thus they call it a syndrome).

Good luck with the ENG. The caloric ("water in the ears") part of the test is actually a pretty "rough" test, but if it happens to show a significant loss of vestibular function, this would help the doctor with diagnosis. Part of the test involves following lights with your eyes, which would give a clue as to whether the central nervous system is involved. (Please note that I'm NOT an expert, and this information may not be entirely accurate or complete!! I'm just a layperson who's "studied" dizziness for a long time.)

Even if you have Meniere's, some people go through a period of attacks and then don't have them anymore, although they may be left with a certain amount of hearing loss and residual dizziness.

Best of luck,
Nancy T.

[Nancy T]

P.S. I should also say that I don't think everyone with Meniere's has success with a diuretic, and those who do may have to try more than one diuretic before they find one that helps. Thus, lack of response to a diuretic doesn't rule out Meniere's.

Also, not everyone with hydrops or Meniere's is salt-sensitive. As I heard one researcher say, some people get dizzy if they just "smell salt," whereas others can eat all the salt they want with no trouble. I think this is the same thing with high blood pressure--some people need to follow a low-salt diet but for others it doesn't help.