Newby

Ask your neurologist if you could have Vestibular Migraine instead of Meniere’s.

 

Hi everyone,

I'll just use this topic to introduce myself as an MD Newby too

This is my first time posting here after spending some time reading about everyone's symptoms and approaches.

I was diagnosed with Menière around September 2018, after I had an intense dizzyness attack right after an intense sports session.
That first attack made me feel completely drunk and I could barely walk for an hour.

I've had my Tinnitus gradually increasing for the last 10 year (at least). I'm now 33.
When I think back now, after I had my MD diagnosis, I remember having bouts of dizzyness also the past few years.

My MD symptoms seem to come and go in all possible orders and magnitudes at random. Currently I'm suffering from fullness, tinnitus, dizzyness all at once.
Ever since my first big dizzyness attack I did not have one like that anymore. The MD symptoms all just come and go in waves, mostly starting with the fullness first.
It takes me more than a week to get rid of the fullness and dizzyness after an attack though, that worries me because it seems like it's takes longer every time!

I started with a low salt diet and vitamine B5 + B6 on April 23 (10 days ago) but I have not noticed an improvement yet.
My focus now goes to caffeïne and alcohol as I start to get the feeling that all symptoms worsen after a day of drinking.

Cheers,
Frank

 

Welcome y42! Nice to meet you.

 

I avoid all of the above, sadly.

 

I have eliminated caffeine. Watch the salt. Still drink a little alcohol but not nearly as much and no red wine (sulfites).

 

"Thanks. I am going to see a vestibular physiotherapist as I have many more questions. I still cannot understand why I have been ok for (approx) 6 month blocks whilst eating and drinking anything and everything and then all of a sudden...BANG! Very confused"
So sorry for you and New Member. Meniere's is a confusing frustrating mess. I haven't seen this in the other replies, so let me point out Meniere's is a relapsing remitting disease. You get hammered then it seems to go away until you get symptoms again. It's true nature is not understood, so people hypothesize causes and try treatments that are reported to help. Problem is, you can have an episode, start a treatment and it will seem to be working because you are in a relapse period, then have a symptom(s) reappear unexpectedly.
I have pursued every non-invasive treatment for which I could find any scientific basis (papers in reputable medical and scientific journals):
Aclyclovir
Betahistine (from Canada)
Low sodium, no caffeine, no alcohol (must do for a month to see if it works)
Pycnogenol (from Amazon m(!), for tinnitus primarily)
None of the above worked for me. I ended up getting a low dose gent injection last October which has been a mixed blessing: my intermittent, daily dizziness and increasingly frequent episodes of rotational vertigo have been replaced by 7 x 24 unbalancedness and increasing episodes like the rotational vertigo (can't walk, nausea, sweats, but somewhat milder vertigo). I am going in for a second shot soon.
My suggestion is to keep careful records, try treatment options one at a time and pursue until they fail. They may not, but they may. My understanding is that most people with Meniere's recover without doing much of anything, only an unhappy minority are stuck with it. I earnestly hope neither of you are among the latter.
My best advice is to find an neuro-otolaryngologist who "gets" it, yield neither to despair or undue optimism as either makes everything harder, and check out Meniere's Disease.
I think the above site is the most comprehensive I have seen for detailed overview of the disease and treatment options.
I hope you both find some relief. Good luck

 

Thanks for the kind words and also the helpful information Tet!

I'm trying one treatment option at a time. For now I will stick with low sodium and extra B5 + B6. If that fails, I'm quitting alcohol and/or caffeine and continue my way from there. I have the feeling my MD restore periods are superlong so I will have to try everything at least a month. Well... that will keep me busy at least

I took most of my information about MD and EH (Endolymphatic Hydrops) from a paper on Meniere's Disease by Nakashima et al that was published in Nature. It's a bit scientific but helps a lot in understanding the disease. It's from 2015 so pretty recent as well.

Information about treatments I got mainly from this website, but I will check out your link to dizziness-and-balance.com as well. Not familiar with gent injections but I do hope that helps you out, best of luck!

 

When my ENT suspected hydrops she put me on betahistine. She believes in high dose treatment so I was titrated up to almost 200mg a day for a month. It did nothing for me. I actually had all my symptoms intensely for the last 2 weeks of it. (Vertigo has never been one though, just lightheadedness sometimes). I stopped it. I’m in Canada. The longest amount of time I’ve been symptom free in the last year is 3 weeks.