Meniere's

[gertie]

I have bilateral Meniere's with tinnitus & migraines & must restrict my salt intake. With POTS we need salt. This seems like an impossible situation. Anyone else have this problem?

[maryfw]

I am sorry to hear about this happening to you. I do not have Meniere's but maybe someone else on the forum will have some insight for you.

mary

[mrsdavidson8605]

Hi,

Did you get diagnosed with Minere's before or after you were diagnosed with POTS? the reason I ask, is I suffered from migranes and "Minere's" for a couple years before I was actually diagnosed with POTS. Just wondering if maybe the POTS is what is causing the migrane type of headaches. I'm not a doctor or anything, but I have similar symptoms and NONE of the migraine medicine they used helped.....it's all such a vicious circle of symptoms.. hope you're doing okay.

[yogini]

I was also misdiagnosed with an inner ear condition and the symptoms turned out to be from POTS. Not to say that it the same for you - some people have both - but may be worth discussing with your dr.

[morgan617]

I have meneire's that was diagnosed unequivically (a special test) about 15 years ago. Mine is also bilateral. I cut out salt waaaay back then, but didn't develop severe problems with pots till about 8 years ago. I have vestibular type, so don't have the classic hearing loss that some do, but do have some loss.

All I can tell you is my experience. POTS is so disabling, but I would rather suffer with those symptoms than with a full blown meneire's attack any day. With pots, you usually at least feel better when you can recline or something, but nothing helps my meniere's which can last for hours and leave residual attacks for days. I call them after shocks. My pots can be a major bummer too, rendering me helpless at times also, but it's just not as awful as a meneire's attack, for me.

I can't take diuretics or anticholinergics, which is what's prescribed the most. I take 1-2 mg of valium a few times a day, and my dose has never changed, unless I'm having a big flare and then he puts me on prednisone till things calm down.

So, to me personally, it is not worth taking the salt. I think my body has become very accustomed to low or no salt, because I grew up that way too. My mom had kidney disease, so we never had salt in the house.

Not taking salt doesn't seem to affect my pots (but that's just me, and I never took it because of the meneire's and hypertension,) but using salt will get me every time. There is also a big difference between being dizzy and having true vertigo, with a spinning room and rocking boat and puking till you want to die scenario. I have days where I am dizzy and I relate those to pots, my vertigo days are very very different.

Caffeine is also a very big trigger for it, so I gave that up too. Of all the things I have, I really think my meneire's is about the worst and I will do anything to prevent attacks, or at least tone them down as much as possible.

Most everyone here uses a lot of salt, but I never did it, even after I was diagnosed. It's a rock and a hard place and you just have to decide which is the lesser of the evils for you. I can tell what it is for me, but you have to decide for yourself which is worse. Good luck sweetie, I feel for you! morgan

[DavidH]

I have the same problem you have and have not found an answer yet.

[gertie]

morgan, I agree with you about P.O.T.S. & Meniere's. I've had seizures, Dysauto, migraines, MCS, childbirth, IBS etc. but I'll take any of them b/4 Meniere's. The vertigo & sickness is horrendous & the room will spin sometimes for 8 hrs, then it takes a week to get any strength back. I had allergic reaction to dieuretics & Antivert so am afraid of them. I take Ativan & Allegra when needed. Allergies are a big trigger for me.

I've had dysau. for about 30 yrs b/4 being diagnosed with meniere's.

Thanks everyone for your reply.