Meniere's Disease Support Group
Meniere's disease is a balance disorder of the inner ear. The symptoms of Meniere's are variable; not all sufferers experience the same symptoms. However, "classic Meniere's" is considered to comprise the following four symptoms: Periodic episodes of rotary vertigo, hearing loss, tinnitus, and a sensation of fullness or pressure in one or both ears.
I haven't posted here in quite some time but the battle with Meniere's is ongoing and I thought I'd just share some observations since (and I guess this would by my first observation) it isn't easy to find info about it. I don't live in a major city and specialists are few and far between.
Background - I was diagnosed around 25 years ago with Meniere's after a few really nasty bouts of vertigo etc. The trigger at that point in time seemed very much to be sodium and that was how I dealt with it. I watched my sodium intake - did my best to avoid salty snacks and stuff (which sucked because I'm more of a salt lover than sweet lover) and that seemed to work. I could generally get away with one or two "cheat days" and not suffer too much. Once or twice per year I'd go on a stretch of unhealthier eating and pay the price for a day with a fairly major attack - and then get back to reality the next day. Things went on like that for more than 20 years.
Escalation - Two or three years ago the disease just became more challenging to manage. I found I could get away with a lot less diet-wise and, particularly in the summer months, it was extremely challenging to get away from the ringing and "fullness" in my ears. I've read that the disease can get worse as you age - this would have started when I was in my late 40's.
Medication - At this point in time I was still adhering to the "reduce sodium" approach to managing the disease. Among other things I did was to just try to sweat out sodium - sauna, workouts, etc. For the first time this approach didn't seem to work. (I now realize that I was undoubtedly dehydrating myself which makes my symptoms worse.)
In response to it getting worse I caved in and got a prescription for Betahistine which, quite frankly, makes all the difference in the world. At the time it seemed to clear the symptoms immediately. In response, I relaxed on diet - enjoyed more salty snacks etc. This then led to the symptoms coming back and I was back to watching my diet AND taking the meds.
Further escalation - Seasonality - My symptoms seem to get worse in the summer months - particularly in hot and humid weather. My personal theory, (backed up by absolutely nothing - haha) is that the humidity and barometric pressure somehow impact the fluid in the inner ear, but that is not based on anything scientific.
This year has probably been the most challenging for me in terms of managing the symptoms. I'm still on the betahistine and don't think I could survive without it. In addition, I've very recently had to give up alcohol (not that I drank a lot, but up to a couple of beers a night was normal) and, more tragically, coffee.
The reason for dropping coffee was an observation that I would wake up with no symptoms, but they would gradually get worse through the morning and the remainder of the day. My response was generally to try to keep hydrated and drink a lot of water (which I do anyway). I wasn't a big breakfast guy - the only thing I was putting into my system was the coffee - so I decided that was the culprit.
Even having given up coffee I noticed that I would wake up (relatively) symptom free - and get worse through the day. I generally ate a relatively low-carb diet through the day with a lot of protein and veggies. With further experimentation - really just grasping at straws - I started eating a somewhat larger breakfast and including more carbs for my first meal of the day. So far - 2 weeks in - that seems to be helping. It's still dicey, but I think this appears to be a winning formula, so much so that I may experiment with adding a bit of coffee back in to see if I can get away with it.
I should add that my symptoms definitely get worse if I don't get a decent night sleep.
Anyway, sorry for the ramble, but, in summary - the following seems to be what helps my symptoms:
1. Drink LOTS of water.
2. Avoid salt to the extent possible.
3. Avoiding alcohol.
4. Avoiding coffee (still subject to further experimentation - haha)
5. Proper sleep
6. Eating a decent breakfast with a good mixture of carbohydrates and protein.
7. Betahistine.
I recognize that most of that (salt, alcohol, coffee) is completely in accordance with the conventional literature. I haven't seen anything related to the breakfast theory and maybe that is just coincidence, but I'm running with it.
I understand that betahistine isn't available in the US, is that correct? I'm in Canada. I'd encourage anyone in the US to ask their doctor about it because it makes a significant difference for me.
I recognize that my symptoms are generally more mild than many now that I'm on the betahistine. That being said, without the additional management they regularly get bad enough that the "brain fog" that comes with the fullness of the ears, was making it more challenging to be productive at work the way I need to be.
Just some random thoughts and observations. No clinic trial - just a sample size of one person trying to along with this frigging annoying condition!