Long time guest but never posted. Thought I'd post a brief summary of my battle. First episode of Meniere's in 2009 while snow skiing. Have had many attacks since which have been anywhere from minor to full blown extended vertigo. I live at 8,000 feet and travel 100 miles one way to work each day over two mountain passes. Needless t say I'm always concerned about the drive and what might happen if an attack kicks in. There is very little cell coverage for my journey. I've had sac surgery, oral and injected steroids, take betahistine/papaverine/and two Maxides daily. Still the episodes continue at their whim and when they do I rely upon valium for some relief. I'm becoming very frustrated and disappointed to say the least. My ear specialist says I'm not to the point of Gentamicin injections yet. Wish there was something. Meniere's is taking my life away from me but I guess I'm just on the same track as many of you.
I'm sorry you are having such a hard time with this. I've never lived at that high of an altitude so I don't know how the pressure would affect me. It's bad enough having to deal with weather changes on a much lower level! I hope someone else has better info for you.
Hi Tallguy, sorry to hear you are going through this. Have you tried antivirals or JOH? in case your MM is caused by a virus? I hope you feel better soon!
I am sorry that you are having these issues. What is frustrating (to me) about your post is the doctor saying that you are not at "the point" for the injections. It just really gets to me that these doctors decide what we should live with and accept. Don't get me wrong, if YOU decided you were not at the point of something destructive to the ear that is perfectly fine. But for the doctors to make that decision irritates me. Unless they have dealt with even ONE of these sudden attacks and lived thru for hours - how do they get to decide when a patient is ready or not? I agree that you should check out anti-virals (if your doctor is open to it); or even the SS protocol discussed here. Last but not least, for me, if/when I get to the point that I am wanting a destructive solution, my personal choice will be to go straight to VNS. At that point I will be so done with it and won't want to go thru yet one more thing that failed. At least with VNS you know you will never go dizzy with that ear! Good luck. And please stay safe during your very long commutes!
I am also on a very low sodium diet, no alcohol, no caffeine, no chocolate etc. I have not tried JOH but was just contacted by him.
I tried the low sodium diet but my blood pressure dropped too low so the doctor said to stop that part; caffeine didn't seem to make a difference (stopped it cold turkey for a couple of years with no impact); chocolate I think may play a role for me. Stress and fatigue do play a big role for me as do my sinus issues. Good luck!
A low sodium diet made my dizziness and vertigo so much worse, plus sapped me of my energy. Had a bad case of electrolyte imbalance and ended up at the cardiologist's office. I still don't salt my food too much but I won't touch a low sodium diet again. You take a diuretic also so be careful with your electrolytes. I don't drink coffee nor do i eat chocolate, but that's more of a personal preference. Chocolate does give me migraines but white chocolate does not. I don't drink at all. Can't stand the smell or taste of it.
For me it has been 28 years and counting. I have been bi-lateral for the past 20 years. At the peak I was getting dizzy over 40 times a month and now it is closer to 10 times. I had a procedure done twice on my right ear at Mayo Clinic called the "Cody Tack Procedure". They no longer perform this because it really increases the loss of hearing rate. Prior to that I had the sac procedure w/shunt and it gave me about 6 weeks of relief. Had gent injections multiple times in both ears. Took every medication that they could think of to treat it as auto-immune between 1997-2001. Tried the Meniett when it first came out and it made no difference. In 2002 I had the sac surgery on the left ear and again got about 6 weeks of relief. Got a C.I. in the right ear in 2009 and left ear in 2013 and it is so wonderful to hear again in both ears. I have never had high hopes on any of the surgeries or whatever I tried because I knew that everything is a crapshoot with this disease. I still love my life in spite of Meniere's and have never gotten depressed or stressed over it. I make plans and live my life to the fullest. Sometimes I have to cancel because of the dizziness but mostly not. I am fortunate to have a family and friends who are understanding and supportive. I never look for sympathy, if I did I can find it in the dictionary between shit and syphilis. Life is good!!!!!!
Tallguy - I would definitely ditch that doctor! I would also definitely get on antivirals as quickly as possible, they have helped a lot of folks including me! If you want to save time and hassle, just buy them on the Internet.
I see Dr. Jennifer Maw at EAR Associates in San Jose. Stanford grad etc. She has never mentioned anti-virals to me.
give a/v's a try you haven't had the beast for too long so you have to give it a shot now! take acylovir in small doses throughout the day and stay on it for several months what do you have to lose? good luck
