Sunday, January 30, 2011

Continuing life with Meniere’s disease

It seems that I have been in a holding pattern in my life since last May when I went back on short term disability. A lot has happened since then. During the summer I had 2 more gentamicin injections that didn’t seem to help. I continued on disability till it ran out and so did my job. Right now I am in the middle of trying to get on long term disability and it has been really difficult. The social security disability which I applied for in November takes time to complete. I know that most claims the first time through are rejected which will lead to my appealing the ruling. It will all take time.

So what do I do now?

I am going to continue to research Meniere’s on line and try to learn as much as possible about it. Knowledge is powerful and you can never have enough of it. One thing that I haven’t been doing is walking. I can blame the weather on that for now but I think it is very important to try and do some kind of exercise. Because of my balance problems I will definitely be careful when walking which will help my feel better in this time of such uncertainty. And I am also going to try to lose some weight by eating right (that should be more of a challenge than walking;)).

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  1. Hi David~
    Boy do I understand about the lack of exercise & weight gain.
    I was trim & in decent shape prior to the Meniere's.
    I try to fit in as much activity as possible on "good days"...especially try to keep my neck muscles stretched.
    OK...SOME TERRIFIC NEWS!!!!!!!!!
    I am now 3 days post-op from the Endolymphatic Sac Decompression surgery.
    It went just great, and since then I have been vertigo free!!
    Also, my head no longer has that "stuffed with cotton, hazy feeling".
    I had no vertigo or dizziness when I woke from surgery. I immediately felt better. (other than your typical surgical type pains.)
    I would definitely recommend this operation..especially since it is the non-destructive one.
    I have not felt this good in 2 1/2 years.
    I will continue to heal and let you know how it's going...but I am so glad I did this.
    You take care~

  2. Please continue with your research you share with us readers. When I got ill 10 years ago I had to stop reading information on the net because it made me worse and gave me more anxiety. But you tell the facts in a way that is very readable and without increasing my anxiety-level.
    I think the fact that life goes on even though you have menieres, and will keep on having it, is both a comfort and a sorrow. Life will maybe not be better than this or will even be worse, something that is hard to accept. But the comfort is that life goes on but in a new way. And in that new way there might be possibilities.

  3. I am scheduled for a consultation tomorrow -I am afraid of the after effects of surgery. I have read so many articles that say there may be hearing loss, continued and worse vertigo, and even complete loss of balance. Can you speak of surgical treatments and after effects? Specifically Gentamiecin.

  4. @Lauri,
    That certainly is good news, I am very happy for you. Keep in touch and let us know how you are doing

    @ Susanna,
    Thanks for kind words and you are right there are always new possiblities.

    I had the gent injections and after the first one I really didn’t have any after effects to speak After the last one I has some problems with my balance
    Good luck and let us know how it went

  5. @Openheart,
    I had several rounds of gentamicin injections, and after the final round I had severe vertigo and nausea, because the vestibular nerve had stopped functioning and the other one needed to adjust to doing all the work to govern my balance. But the nerve kept regenerating, so my vertigo continued to be a problem.
    That's when I decided to have the surgery. There are two kinds, one of which destroys your hearing (labyrinthectomy) and another that preserves your hearing but is far more complicated and a bit more risky.
    I have had the labyrinthectomy, because my hearing was very far gone already. I had some minor balance problems immediately after, but that cleared up within a few days because I had already had all the gentamicin treatments.
    I have a good friend who had the other surgery, so she could preserve her hearing. A year later, she was deaf in that ear anyway. And she had major balance issues for months after the surgery, because she had not had any gentamicin treatments before the operation. But now, three years later, she has good control of her balance and says her life is pretty much back to normal.
    I still have some inflammation in my ear that's causing some dizziness, but it's only been three months since my surgery. I hope to get that under control soon.
    It varies from person to person, and although I've heard of many people who have some balance problems, for me it's far preferable to the extreme vertigo and sickness I was experiencing last year.
    Fighting Meniere's is hard work, but I feel I have to keep on trying if I want to keep my life going in a direction I like.

  6. I have lived with my vertigo for many years now. (1994 was the first attack) I just did my 3rd year of gent treatments two weeks ago. My ear keeps regenerating as well. When I am good though, I am off balance but it is much more preferable than what I was going through. My attacks happened daily for 5 years. I was having Tumurkin's catastrophe 3-7 times a day. If someone walked past me I would fall over just from the visual change.

    Now even with the treatment making me a little dizzy while it is kicking out of function I waked to the mall with a friend today. I was dizzy and of balance, but my bad day under gent is better than my best day 3 years ago.

    I even am taking dance classes. I have a had time with turns and such, but my teacher understands. I still do it. the more active after the destructive treatments the faster you heal.

    If it comes back again in a year (which has been the pattern so far) I will have the labrynthectomy. Even if I had to go through 4-6 gent injections a year to buy me that year though, I would do it in a heartbeat.

  7. OH and keep it up. I have been on Social security for 5 years. But I am hoping to go back to work soon. There is life after meniere's.

  8. Hi Darkwingedfae
    that sounds great about taking dance lessons, it is good to see that meniere's doesn't stop you from doing what you want. I am also glad that the gent injections are helping

  9. I've been thinking that yoga and tai chi might be very helpful for Meniere's, since both focus to a large extent on finding and maintaining balance. I keep meaning to try them, but somehow don't get around to it. If I do, I'll let you know how it works out.

  10. I'm 52 and was diagnosed with Meniere's in 2005. Had 2 surgeries, the shunt (lasted 4 years), labyrinthectomy of my right balance/hearing nerve. Also had a 3rd surgery to get a titanium implant for the BAHA sound processor. It's been 1.5 years and have not had vertigos anymore, however I still do have other symptoms which makes my work very difficult. I am experiencing: right ear deafness, balance issues, dissiness and nausea, migraine headaches, fatigue, head fog, tinnitus, disorientation, floating like sensation, etc. So tired of fighting this and do not know what to do. Has anybody gotten on Long Term disability? any advise for me?

  11. You certainly have been through a lot with this and I know that it has been tough. Right now I am also trying to get on Long term Disability and it has been difficult to say the least. the best thing that i can tell you is to make sure you have all your records of any surgeries or procedures that you have had because you'll need them if you decide to apply for Long term.
    I wish I could be more help
    good luck and stay in touch