First of all, I'm not a stranger here. My name is Bert. I had to registered again because I totally forgot my user name and password. I participated extensively for a number of years and met many friends.. I have had Meniere's in my right ear since 2002 and had three gent shots in 2008 with no good results. I am 90% deaf in my right ear accompanied by loud Tinnitus and frequent vertigo episodes. I have balancing problem and dizziness with intolerable headaches. I had three brain MRI's with negative results (no brain tumor thank God). My question is this: I don't recall where I read that Meniere's patients should not drink decaffeinated coffee, so I switched several years ago with no major improvements in my symptoms. Is this a myth or does have any medical validity? I's like to hear your input. Thank you, Bert.
I guess it all depends on what is the core reason for MM symptoms in each particular case. I believe that what doctors call MM is actually a set of various diseases with similar performance. It may be 10 different diseases. That may be the reason why some people respond well to antivirals, whereas others do not, and so on. If you see no difference while drinking decaffeinated coffee only for a prolonged period of time, I suggest you try drink ordinary coffee for some time and see what happens. I drink coffee three times a day, slightly less concentration though. I always did. And I do not think it matters. Best regards
I know cutting out caffeine helps some people, but not for me. I have tried switching to decaf and even cutting out coffee all together but it makes no difference. I drink 1-2 cups of regular coffee a day.
Since you have balance issues, dizziness, and headaches and gent shots did not help you, have you considered that you may have MAV as well as MM? and tried the treatments for MAV?
Or MD may be really one disease whose endpoint is hydrops ( which I believe) but has morphological influences, genetic/immune profile issues and a variety of pathogens that can play a role. BTW I tried no coffee too and it made no difference. That said early on I felt that some attacks were preceded by caffeine intake. That may have been coincidence or maybe at different stages we are more susceptible to certain triggers. I now drink coffee all the time.
As I learnt, it is next to impossible to confirm inner ear hydrops. There are now some MRI scans that are said to be able to actually detect it. On 7 July I am taking such a scan. What I'm not sure is do viruses cause hydrops? Can somebody put some light on this? Vicki I guess
There is a variety of symptoms and triggers from sufferer to another. I doubt that MM is really a unique disease, especially since it is diagnosed by means of elimination of all the other possible diseases. For example, I have no hearing loss and aural fullness after five and a half year since the first episode. Vestibular sense has been fluctuated in my right ear but it is 100% at the moment. And doctors come up with all the weird diagnoses all the time, like Vestibular MM, Cochlear Hydrops etc.
Thank you to those who answered my question. My ENT doctor told me that I do not have MAV at all. Bert.
Bert - when I was diagnosed (after all tests ruled everything else out) with Meniere's, I immediately eliminated all caffeine and reduced salt. Reducing my salt made my blood pressure drop too low (doctor said to go back to original). For two years I did not have a drop of caffeine, no difference in my attacks. I now have caffeine again and when I restarted I was cautious but it made no difference...to me.