Edited 1/23/2008 to add: I have decided to close comments on this post because I am uncomfortable with some peoples’ view of my website as a Meniere’s “group.” I appreciate that so many people have responded to what I wrote but this is simply an account of one patient’s battle with MD and not an appropriate place to ask medical questions, give medical advice, or seek support from a group. If you want a quick link to people to talk to please visit menieres.org. They have several forums and you can register and participate for free.
Thank you to the many people who have posted their messages of support, suggestions, and appreciation in response to my posts about my struggle with Meniere’s Disease. I want to remind everyone that I’m not an expert, just another patient. If you have vertigo, don’t assume it is Meniere’s Disease, it could be something else. Just because one treatment hasn’t worked for me doesn’t mean it won’t work for you. The best advice I can give anyone is to find a good doctor and get informed (ask the doctor lots of questions, take notes, bring someone with you to the appointment, etc.).
If you do have a diagnosis of Meniere’s Disease, the best resource I can direct you to is this book:
Meniere’s Disease: What You Need to Know, by P. J. Haybach, RN, MS which is available to order from the Vestibular Disorders Assocation website.
This is the only book written for patients with Meniere’s Disease and it is much easier to understand than a lot of the medical literature you may come across.
Some good, neutral online resources include:
If you are looking for people to talk to about Meniere’s Disease, I suggest menieres.org. They have several forums and you can register and participate for free.
(Edit to add:) Thanks Lynn for the heads up that there is now a MySpace community for people with Meniere’s Disease - this is another great opportunity for those of you looking to connect with others.
To those of you who have offered suggestions for various treatments to try, thank you and I assure you that I have thoroughly researched the options and possibilities and am doing what works best for me.
As for me, I had my third (and last) Gentamicin injection on Thursday the 14th. I had a small flare up of symptoms last week which means the treatment had some effect. I still am having the symptoms I was having before the treatments but it could just mean that it is going to take some time for my inner ear and brain to compensate for the damage done by the Gentamicin.
At this point if I stay at home, I usually can make it through the day without vertigo, just mild dizziness and nausea plus ear fullness and pain. However, I can only handle small amounts of time outside of the house at this point. My vestibular system is damaged and trying to adjust right now and exposure to too much light, noise, or external movement and stimuli can easily trigger vertigo and other symptoms. This last week I’ve been trying to get out of the house and be a bit more active but about two hours seems to be my time limit in public places before I get overwhelmed. Hopefully, this all means that my vestibular system is adjusting and compensating and my brain is learning to depend more on my good ear and my vision to determine my balance. Right now it is a wait and see situation. Three is the maximum Gentamicin injections my doctor is willing to try because in his opinion if it hasn’t controlled the symptoms at that point then more injections will not help and only risk damaging my hearing. I trust his judgment and do not want to go through any more injections. I will be thankful if this controls my symptoms, and if it doesn’t then I’ll deal with that when I get there.
