BlogTuesday
June 26th
2007
Meniere’s Disease Information and Health Update
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:
- Meniere’s Disease Information Center
- Meniere’s Resources, Inc.
- Washington University’s Meniere’s Page
- American Academy of Otolaryngology - Head and Neck Surgery (includes a “Find a Doctor” link)
- National Institute on Deafness and Other Communication Disorders
- Vestibular Disorders Association
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.
I have some additional research and links on my site, along with videos that demonstrate some of the maneuvers doctors use in the office with meniere’s. I also have links to forums of communities where you can talk to other Meniere’s patients about treatments they tried.
I found relief by having a ventilation tube put in my eardrum last November. It got rid of that full feeling in my ear and I was going to get the Meniett Device, but the ventilation tube has worked so well, I haven’t needed to get it.
My www.myspace/menieres site has almost 70 “friends”, all of whom are meniere’s sufferers. We all know what you are going through and hope you feel better very soon!
June 28th, 2007 at 9:08 amThanks for the heads-up, Lynn, I edited my post to include a link to the MySpace account. I’m glad to hear that a ventilation tube was effective for you, my ear feels full with or without a tube. I’ve had four different tubes at this point, apparently my ear drum doesn’t like them! But after the last one popped out, I still have a small opening in my ear drum so I can use my Meniett.
If I may make a small suggestion, as someone currently experiencing symptoms, the background on your website made me quite dizzy. You may want to consider something more neutral for a community that often is very sensitive to visual stimuli.
June 28th, 2007 at 10:23 amI had an operation at the Shea Ear Clinic (ENT) in Memphis, TN for my vertigo. I was diagnosis with Meniere’s Disease 2 years ago. Since the surgery I have no more vertigo. The surgery of the inner ear is called inner ear perfusion. For my case, the surgery stops the vertigo and foggy feeling about 75%. The description of the operation is located at their website at http://www.sheaclinic.com/documents/Inner_Ear_Perfusion.pdf
He has been performing the surgery for well over 15 years.
My first ENT had no ideal about how to treat this illness. She gave me diareutic and vertigo medicine.
Since my surgery I go to a homeopathic doctor who has given me remedies to further heal my illness. I still have tinnitus. The homeopathic doctor has help my inner ear pressure and tinnitus further. This surgery is a miracle and I want to tell everyone effected with this strange illness there is hope. No more vertigo for me. Please make an appointment with Dr. Shea and he can evaluate you. Since he discovered the procedure he would be the only person I would go to.
Also, I believe a neck injury, which puts pressure on nerves in your neck, can cause the vertigo and inner ear pressure, which was my case. So a good Chiropractor’s evaluation is essential too. I’m from Alabama and my chiropractor is the best. Please pass this along.
July 11th, 2007 at 10:03 am[…] Recent Posts We live in a brick ovenPictures in the late afternoon sunBack from vacationBlanket and SpinningA Purple Pooling Problem (among other knit news)Lots of exciting thingsIn Which I Ramble On Numerous SubjectsChunky UpdateBack to BusinessMeniere’s Disease Information and Health Update […]
August 18th, 2007 at 2:23 amHi Annie,
August 19th, 2007 at 5:26 pmThis is my 2nd visit and post to your site. Wow, your site looks great! My mom sent me the link. She struggles with the many symptoms of Meniere’s, so, I am grateful for your site where you share both your experiences and your human side.
I love your knitting projects. When I was young, my mom taught me some simple knitting steps. Problem was, all I ever made were potholders. Now,what I would give just to remember how to make a potholder.
Bless you in your journey!
Brenda
(aka Dorothy C’s daughter)
As a Meniere’s Dz sufferer for over 3 years, I found your site a little disorienting. Could you change the background to a simpler less dramatic one?
For treatment, i agree I with Lisa. I finally found this doctor who confirmed my diagnosis was Meniere’s. He suggested I would benefit from the Inner Ear perfusion. It took about a month after the surgery for the symtoms to subside, but I can drive again and have few if any symptoms of the disease for now.
November 10th, 2007 at 2:18 amMy mother in law has suffered with menier’s since 1987. This year has been very difficult. We have seen a Neurologist and have an appointment with a ENT doctor, to check the advancement of her symptoms. Thank you for sharing information about this medical problem. Education is so important to patients in learning to deal with all of the issues.
November 17th, 2007 at 5:00 pmmy mom had the perfusion several years ago, 3 of them in fact, now she is so debilitated, has no balance, and is almost at the point of not being able to live by herself, we have researched this procedure and its been found to make patients worse, and destroys the balance forever. sorry
December 5th, 2007 at 5:17 pmThank you for your website info. I am a sufferer of Meniere’s Disease (13 years, diagnosed) and Severe Vertigo attacks. Tried Endo Lymph Sac Surgery in 01 to releave the pressure of my left ear. Helps a little but as a suffer of vertigo (15 years) and deafness (43 year) and loss of Vestibular Balance of 27% in Left side your information was very helpful. SSD has tried 5 times to deny me but no more, will still keep fighting. Thanks much! LOL Tammie
January 6th, 2008 at 12:51 amI HAVE BEEN DIGNOISED WITH MEARS FOR 13 YEARS. MY SYPTOMS ARE NOW IN THE LAST STAGGES ,I HAVE HAD ALL THE TREATMENTS AND AM NOW HAVE TO MAKE A DECESION ABOUT GOING IN AND HAVING THE NERVE CLIPPED IN MY EAR I WOULD LIKE SOMEONES OPION ON THIS. I STAY DISORENTED ALOT AND MY DIZZINESS NEVER LEAVES ME ANY SUGGESTIONS
January 6th, 2008 at 2:10 pmI would like to tell Shelia Sizemore, don’t have the nerve clipped. I have been through everything for menieres,even spending close to $3,500 for the Meniett Device. So far nothing has worked. No meds,no treatments nothing. Then after yrs, it went into my other ear. If I would have had the surgery,the dr., said I would be bedfast. Have hardly any balance now and most days can’t do much. Please find a good Dr., who will explain that it can at anytime go into the other ear.
January 15th, 2008 at 1:30 amThis is all new to me. For the past 6 or 7 years I would have an occasional dizzy spell, but brushed it off as having low blood pressure. But about 5 mths ago, I went to the doctor because I could not sleeep. He told me that I was depressed and so he put me on depression medicine. Since then, I have been getting very dizzy to the point of throwing up and not being able to stop. My doctor said she couldnt figure out what was wrong with me. She put a motion sickness patch on me and gave me Meclinzine. The combination of those 2 have worked very well but she sent me to an ENT. They want to do an ENG on me and that means that I had to go off of my medication for 48 hours, they could not complete the test because I kept throwing up. I keep asking does anyone have any ideas what could be wrong with me and they keep saying, your tests seem fine. We have to run more tests. They are going to try to do the ENG again next week. My boss actually was researching and found this. These sound so much like what I go through but no doctor has ever even mentioned this to me. They did however say that they tested me for MS and I dont have that. These spells are now constant. If I take my patch off, I can not function. I am pretty much stuck in the bed, cant eat, drink, all I do is sleep during this. These patches are very expensive, but I am scared to death not to have them on.
January 22nd, 2008 at 9:24 pmI 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 http://www.menieres.org — they have several forums and you can register and participate for free.
January 23rd, 2008 at 2:23 pm