Sunday, August 29, 2010

Routines and habits of a Meniere’s disease patient

If you have had meniere’s for a long period of time then you know that there are certain routines and habits that you follow. There are things to do and a lot of things not to do that make up your average day. Meniere’s can profoundly change your life’s routines. Here are a few of mine.

  1. Medications – there is one thing that you try not to do and that is to forget taking my medication.  
  2. Carry your medications with you – I have a small blue bag that I got at the doctor’s office that I carry all my emergency meds with me such as Antivert, valium and phenregan. All’s it takes is one attack without the meds and you will never forget them again, I know I didn’t. 
  3. I don’t know if this matters or not but I can’t sleep on my left side because it seems to make me dizzy. The reason for the left side is because my left ear is my bad one. Maybe it is just superstition on my part but I avoid rolling over on my left. 
  4. After my drop attack I now make sure that I get out of bed slowly. I don’t want to risk having a bad fall. 
  5. Even though I don’t think a low salt diet ever helped me I still am leery of anything that is loaded with salt. It’s not really good for you anyway. 
  6. When I am swimming I never put my head under water. In the past I have been told that it shouldn’t be a problem but I avoid it anyway. 
  7. I never drank that much before but now I don’t drink at all. Alcohol can play tricks on your equilibrium which you don’t need if you have Meniere’s disease. 
  8. I try very hard to keep a positive outlook which can be very difficult when you are stuck with this disorder.

I am sure that I left out many things but these are the ones that come to mind.

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Wednesday, August 25, 2010

Vestibular prosthesis and Meniere’s disease

As I have written many times in the past some of the best information that I receive about Meniere’s disease is from the comments that are left on the blog posts. A couple of comments last week were about a new implant being developed by Dr. Santina at Johns Hopkins. The implant is a vestibular prosthesis.

Excerpt from Ryan…

Have you heard about the vestibular prosthesis to restore balance coming out of John Hopkins? Very good news for all us Meniere’s sufferer.

Check it out if you have time. I believe it works like a cochlear implant except it restores balance. I believe the Doctors name is Santina.

Excerpt from Susan…

I read the vestibular prosthesis about Dr. Santina at John Hopkins.

I emailed him and he responded that he hopes to be implanting them in humans within a year or two. Good stuff. Brilliant man.

I also found out today that Dr Rubenstein has developed a

vestibular prosthesis as well that acts as a pacemaker for the inner ear for Meniere’s patient in much the same way one does for the heart.

He begins implanting them in humans in the next few
weeks. Excellent results animal models with induced Hydrops…

What makes this exciting is that it would help you maintain your balance after your vestibular system had been damaged. Remember that the gentamicin injections destroy the vestibular system in whatever ear has the shots. I know in my case that my balance took a long time to recover after the first set of injections and it taking a while after this set of gent injections.

There is a really good article in Forbes that helps explain what doctor Santina is doing. I would definitely recommend reading it. Another good post about Dr. Santina and his work is from (it is from 2007 but still very interesting).

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Sunday, August 22, 2010

First Drop Attack

Last year in one of my earliest post I wrote about drop attacks. At that time I was fortunate not to have ever experienced one. I had plenty of bad attacks with throwing up and my head swirling for hours but nothing ever knocked me off my feet. But that changed last Thursday when I had the swiftest attack that I ever had.

For the past few months while I have been on disability I have experienced balance problems along with meniere’s attacks. The attacks weren’t as terrible as in the past but they still incapacitated me for a while. The balance issues are a result of the 2 gent injections that I received this summer. It usually takes a while for the body to adjust to the balance coming from one ear. I don’t think that I am quite there yet.

This past Thursday morning I stayed in bed a little longer than I usually do. I slowly got out of bed and took one step and my head spun so hard that I hit the corner of the bed. I was able to put myself back in bed where I remained (because I couldn’t even think about standing up). I became nauseated as I stared at the ceiling till the spinning subsided. All in all the whole attack took about an hour and half before I even tried to get out of the bed. The after effect was similar to bad attacks of the past, I was very tired and couldn’t do much except lay in bed.

Why did it happen now?

The only answer that I can think of is that after the first series of gent injections I had a really bad attack about a month after they were finished. Well, it has been a month since the second group of gent injections so maybe that’s it. I don’t know what to think.

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Wednesday, August 18, 2010

Meniere’s shunt surgery without the shunt

In the past I have written about a meniere’s surgery called the endolymphatic shunt surgery. I had an opportunity to have the surgery done in 2008 but I didn’t have it done because I had read that it wasn’t always effective with eliminating the vertigo attacks.

I got another doctor’s opinion and he confirmed what I had read on the internet that the shunt surgery wasn’t the way to go.

The other day I received a comment from Wendy who had the surgery but didn’t have the shunt put it. It sounds like the surgery (without the shunt) has been very successful for her.

Here is an excerpt from the comment…

So my doctor recommended surgery. They still call it Endolymphatic shunt surgery but they don't put a shunt in. He drilled a hole in my skull right under the back of my ear where the Endolymphatic sac is, and he shaved part of my temporal bone off. This gives the sacs more room when they fill with fluid so they won't end up mixing fluids. I had the surgery on April 28th. I've only had 2 real vertigo attacks since then. I will have all the signs one is coming and then it just doesn't.

Unfortunately, I have this in both ears and he only operated on one. This week both of my ears are going crazy, and I've had a bad case of vertigo. I'm almost sure it's because of the left ear though.

This surgery has a very low chance of hearing loss. I have pretty bad hearing in my right ear anyway. But the vertigo was so bad, I wanted to die. I would accept going deaf, if he could just stop the vertigo! Lots of people live without hearing, but the vertigo was impossible.

To read the full comment go to my Understanding your options with meniere’s disease post.

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Sunday, August 15, 2010

Understanding your options with Meniere’s disease

I had another doctor’s appointment the other day. I didn’t have any great expectations going into it and I wasn't disappointed. I told the doctor that my balance was still giving me problems and I was still having meniere’s attacks. He didn't seem surprised. I could have requested another gent injections but I really have to wonder how effective it would be at this point in time. All total I have had 6 of them in 2 years. They seemed to work after the first series of 4, at least for a little while, But now I don’t know if they are going to make a difference at all. In fact I think that the last 2 shots if anything has reduced my hearing in my left hear. It is hard to say because I didn’t have much hearing in that ear to begin with. What do I do now? I don’t know but one thing is for sure with Meniere’s disease you have to understand all your options of treatments and what could be the consequences.

If you have had meniere’s for a while then you probably have done quite a bit of soul searching as to what your treatment options are. Have you cut back on salt, has it helped? It never worked for me but it might for you. What about cutting back on caffeine or alcohol? Cutting back on these things is usually recommended when you are first diagnosed with Meniere’s disease. It may help some folks but I haven't heard about it.

And what about treatments like gent injections or steroid injections? Or surgeries that may destroy all your hearing and after all that it still may not help. Take your time and deliberate slowly because you will be the one to live with the results, good or bad. Advice from your family and friends is nice and they mean well but you are the one who has to make the decisions.

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Wednesday, August 11, 2010

Loud noises, hearing loss and Meniere’s disease

What a predicament! My hearing is bad and loud noise gives me headaches. I have been losing my hearing in my left ear for several years probably even before I had Meniere’s disease. My right ear so far is normal. Although lately I have been hearing popping sounds out of it, hopefully that isn’t anything to worry about. Ironically, loud noises are really starting to drive my crazy.

As I have written before I am fortunate not to have tinnitus, although I do have frequent bouts where a static or rumbling sound comes from my left ear. I don’t believe that it is tinnitus because, I may be wrong, tinnitus is constant. But the thing that is really bothering me know besides all the short Meniere’s attacks is loud noise. I took my son to an indoor pool the other day and the place was packed with kids. The minute that I walked in the noise became almost unbearable. Not only the sound of kids playing, but the echo of the indoor pool was driving me crazy! Does noise affect you?

Right now I am still on disability and I have a doctor’s appointment tomorrow. Since I have been continuing to have balance problems and meniere’s attacks he probably will agree to another extension. We will see…

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Sunday, August 8, 2010

Short meniere’s attacks

The past couple of weeks haven’t been too good for me. While I am still having problems with my balance I have also been having meniere’s attacks. Thankfully they haven’t been the kind were I couldn’t stand and I couldn’t stop throwing up. The Meniere’s disease attacks that I now have don’t last as long but occur more frequently.

As I have written in a post a few days ago I haven’t been diligent in taking all my medication lately. Right now I am back taking everything that I am suppose to plus a couple of Antivert through out the day. Since I am home on disability I take my son to school and pick him up in the afternoon. I take one Antivert before each trip. I don’t know if that helps me really but I don’t want to have an attack with him in the car. Luckily there haven’t been any problems yet.

The short attacks that I get now are usually when I am on the computer and my eyes start to jerk and then the room spins. Fortunately the spinning will stop after a few minutes but at that point I usually walk away from the computer and try to rest my eyes. This has happened quite a few times while I was on the computer and it has also happened when I was watching TV. I don’t think there is a problem with my vision. It is probably has something to do with the recent gent injections playing havoc with my balance and causing the spinning. I’m not sure.

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Wednesday, August 4, 2010

Don’t stop taking your meniere’s medicine!

There seemed to be an endless number of medications that you can take to help alleviate the side effects of Meniere’s disease. In my case I take a supplement that contains an assortment of vitamins and nutrients and a diuretic called traimterene-hctz on a daily basis. When I get dizzy I take Antivert or valium or phenregan. Problems can sometimes arise (like it did to me) when you stop taking your medication.

My prescription for traimterene-hctz ran out a month ago. At the time I wondered if I really needed it. I was getting dizzy anyway and I’m at home due to being on disability, so why not stop taking it.

It wasn’t a good idea.

Although I couldn’t really tell if it was the reaction to my latest gent injections or the lack of my medicine that was causing my spinning episodes, the headaches that I was getting on a daily basis were really becoming bothersome. Another issue that I have to deal with is keeping my blood pressure down. I can always tell when my blood pressure is up because I get headaches but what puzzled me was that I never missed taking my blood pressure medicine. Finally it dawned on me that the diuretic also had an effect on my blood pressure and that was causing the headaches.

I know in the past I have written about becoming immune to meniere’s medicine but be careful and always check with your doctor before stopping any medication.

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Sunday, August 1, 2010

Meniere’s disease and Social Security Disability

This is a guest post written by Gordon Gates. Mr. Gates is a Maine disability attorney specializing in Social Security disability law. He publishes a legal blog, the Social Security Disability Lawyer.

Social Security disability insurance coverage is gained through the Social Security taxes that you pay when working. If you become unable to work due to your medical condition, Social Security disability benefits may be available for you.

Social Security disability is available for those with Meniere's disease, if the disease is severe enough to prevent gainful employment. Meniere's disease can result in recurrent vertigo, loss of balance, ringing in the ears, and deafness. The vertigo alone is disabling, in my opinion.

Demonstrating the severity of your symptoms is the challenge in a disability claim.

Social Security has a listed impairment covering Meniere's disease. Social Security adult listing 2.07 explicitly covers Meniere's disease. The listing states:

2.07 Disturbance of labyrinthine-vestibular function (including Meniere’s disease), characterized by a history of frequent attacks of balance disturbance, tinnitus, and progressive loss of hearing. With both A and B:

A.  Disturbed function of vestibular labyrinth demonstrated by caloric or other vestibular tests; and

B.  Hearing loss established by audiometry.

Anyone suffering from Meniere's has probably seen a specialist, and had the appropriate audiometry testing. For a claimant suffering from Meniere's who has had the benefit of good medical treatment, this should not be a difficult listing to meet.

To establish the severity of your symptoms, it can be helpful to keep a journal of episodes of balance disturbance and vertigo. Be sure to tell your doctor about the frequency of these episodes as well. Your medical records - the doctor's treatment notes and progress notes - are the principal evidence for your Social Security disability claim, and they will be used by the Social Security Administration to evaluate your disability claim.

In general, doctors do not focus on your functional limitations. So it is important to tell your doctor what your limitations are. It will help your doctor better understand your medical condition. It may also help your disability case, since eventually those limitations will end up in the doctor's progress notes, and those notes will be used by SSA to establish your limitations.

Lastly, if you are applying for disability, please consider getting help from an attorney. There is only a fee if your claim is granted, and the Social Security Administration must approve any fee charged by an attorney for representation before the agency.

I would be happy to address any questions in the comments.