Wednesday, June 30, 2010

Meniere’s research from Australia

I was looking up something on the internet when I came across an article on Meniere’s disease. It seems that someone in Australia is trying to find out how to cure this horrendous and life changing disorder we know as Meniere’s disease. The fact that someone is at least trying to find a cure is very encouraging.


Dr Daniel Brown, a post doctoral fellow at the University of Sydney Medical School, is behind the effort. Dr. Brown has seen and understands the frustration of Meniere’s disease patients who try to look for any way to relieve the symptoms of this perplexing disorder.

Dr. Brown also understands that many times people in the medical profession, who know there isn’t a cure, become resigned that there really isn’t anything that can be done for them.



Here is a great quote from Dr. Brown



"Clinicians all know about it, and know of Meniere's sufferers, but because they can't really help them it gets put to the side," Dr Brown said.


"People have been studying it for the last 100 years and they drop it because they think that's old Meniere's Disease, no one is ever going to come up with an explanation for that or come up with a cure.


"It's done with - we can't work it out."

If you have meniere’s you certainly know what is talking about!

Dr. Brown has set up the Meniere’s Laboratory that was funded by Meniere’s Research Fund, which is comprised of Australian meniere’s sufferers.

It is so good to hear about research being done on this disorder. I wish Dr. Brown much success in his quest to find answers to this horrid condition.

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Sunday, June 27, 2010

Meniere’s Attack after gentamicin injections

I knew that it was too good to last! I hadn’t had a major spinning Meniere’s disease attack in quite a while. Over the past month I had felt bad at times and light headed but none of the mind bending spinning around me. My second gentamicin injection was last Wednesday so it was only a matter of time before I got sick.


Yesterday afternoon I was on the computer doing something when my head felt light and my eyes seemed to jump a little. No real call for concern it happens a lot especially if I have been on the computer for a long time. I got up from the computer and took an Antivert and lay down. In the past when I got sick I would focus my vision on the ceiling light, if it started to move then I knew there was a problem. I thought that every thing was okay because the light fixture that I was staring at didn’t move. I decided to close my eyes and try to rest.

That was a bad move on my part.

My head jerked to one side and I opened my eyes to see the light fixture almost a blur from spinning. I felt nauseous. I kept my eyes staring straight ahead as I tried to stay calm. The spinning slowly came to an end. I stayed in bed I guess for another hour before I felt safe to get out of bed.

This was a bit surprising but meniere’s attacks do happen after gent injections. So at least I was home and not out somewhere, especially somewhere driving! I can expect more of these attacks for the next couple of months till my balance becomes adjusted again.

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Wednesday, June 23, 2010

Meniere’s disease and pain killers

Besides this blog I also have one about sleep apnea. I try to update them twice a week on Sunday and Wednesday. Usually they don’t have anything in common but today they do. The pain killers that I have taken for my meniere’s disease have been causing havoc with my sleep.


After my last gent injection on June 9 I experienced quite a bit of discomfort. Not only did I have a major headache but my ear ached also. The doctor called in a pain medication to see if it would ease off the pain. It did, at least a little. The problem is that it made me tired because the pain killer is also a sedative which isn’t good for sleep apnea patients because it makes the muscles in the back of the throat relaxed which causes more blockage of the airway. So it either live with the pain and not rest, or vice versa.


Of course if you have Meniere’s then you know that a good many of the meds have some sedating effect which can make it really rough during the day when you would like to stay awake! Valium is one of them. I used to take valium, low dosage, every morning. Since I have been on short term disability I have stopped taking it every day. Right now I have been taking it when I feel an attack coming on. I think that it has worked pretty good.


And Antivert also is a sedative and like valium I try to limit the number that I take, now only if I feel an extreme attack coming on. The med that I take after an attack is phenregan which really makes me tired. After taking it I usually can’t do much of anything.

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Sunday, June 20, 2010

Surgery, hearing aids and Meniere’s disease

It has been over a week since my last gentamicin injection and things are pretty good. I still feel like I could have an attack every day but I usually take medication before that happens. I am still on disability and I don’t know how long that will be because I have 3 more gent injections to go through. I hope that my meniere’s disease is controlled by these shots because I am not sure what my options are after that, maybe the Labyrinthectomy surgery.


My doctor mentioned that he had another patient who went through 2 sets of gent injections to no avail. Finally this patient decided on the Labyrinthectomy surgery. I had received an email from someone who had the surgery done and it seemed to go all right for them.

Here is the comment.



Anonymous said...


I had a Labyrinthectomy in 2001 due to a 10 year ordeal with Meniere's in my left ear. My right ear is doing great. I have had a Bone Anchored Hearing Aid (BAHA) since then for the left ear. The only symptom that has remained in my left ear from the Meniere's is the tinnitus. I may be deaf in the left ear, but I have been contending with this tinnitus since 2001(really since 1992 when the Meniere's began) & I am finding as I get older, it is getting worse. The good thing is that my Meniere's did not go to the other ear. My otolaryngologist (at the University of Wisconsin Clinics & Hospital-Madison) told me years ago that if you don't get Meniere's in the other ear within two years of the onset of the first ear, you will not get Meniere's in the other ear. Good luck all you Meniere's sufferers. I know your ordeal & empathize with you.




This is interesting because I didn’t think that you could use a hearing aid after this type of surgery. I will definitely look in to that. Also my doctor told me the same thing about bilateral meniere’s, if it doesn’t go into the other ear within a few years then it probably won’t. That is good news but with Meniere’s disease nothing is written in stone.

The thought of surgery scares me quite a bit, because I also received a comment from someone who had a terrible time with their surgery. Here is Marsha’s story from my squidoo page.

Hello,


I to suffer from Meniere's. I have had it since 1997. I have had the ear sac surgery was ok for awhile but it came back with a vengeance. I would have attacks that lasted 5days. I was very sick and some mornings wish I just wouldn't wake up. I did the diet no salt no caffeine. Watched what I ate sit had attacks. I took different drugs Antivert or valium did not work for me. About 2 years ago I had my inner ear removed hoping this would work. I still have balance issues can't climb stairs ground has to be level or I will fall can't drive a car because I fill drink and can't focus on the road. I still have ringing which is even worse now then before. I am also on SSD because I can't work. This disease makes me fill so worthless I used to be very independent now I have to count on my family to take me places. They told me that this surgery will make it better well you can't prove that to me. I still have attacks not as bad but bad enough to the point I don't want to even leave my house. People don't understand how scary it is. I worked for 20 years taking care of people and now I can't take care of my self sometimes. Well thanks to those who read this makes me fill better knowing I am not alone.


Marsha






I feel terrible for Marsha and anyone else who have had such a very bad experience with surgery because this type of surgery can’t be reversed.

Hopefully the gent injections will work and I wouldn’t have to even consider surgery. That’s what I hope for.



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Wednesday, June 16, 2010

Meniere’s disease and cereal?

I get a lot of interesting e-mails that helps me immensely, not only from the information that I get about certain procedures and medications but also about how people are dealing with meniere’s. I feel really grateful for that. I received an email the other day on my latest post about reexamination of my meniere’s disease. It is from Susanna and she writes about a special oat-flakes that helps with meniere’s among other things…



I`m one of those who have tried a lot to get better. At the time being I´m on diuretic, one pill aday (in the morning). Sometimes I can take two pills. I also take Betaserc 4x16 mg - two in the morning and two in the evening. My doctor also prescribes special oat-flakes called SPC-flakes. It contains something called anti secretoric factor. From the beginning the flakes were ment for people with Crohns but they found out that it also is a help for us with Menières. I don´t know if it helps but my stomach is better than ever :)


I have also got cortison-injections in both ears. I´m so sorry to hear that your gent-injection was so painful. I think mine hurt, but just a short while. But I got a spray on my eardrum first to take away the pain (I don´t know the english word.).


I also tried the Meniette a few years ago. I know that some people get better just from making "the hole" in the eardrum before using the Meniette. I didn´t.


As I think we all have noticed - it`s not possible to find out what treatment that helps and what doesn´t. I have accepted that Mr Menière lives his own life despite what I do. So I just try to do things that make me feel good and happy. Maybe my anti-depressive (?) pills helps me feeling rather ok.But life CAN be good - even with Mr Menière as a constant follower.


Susanna


I am glad that Susanna is dealing with her meniere’s so well. Unfortunately it sounds like the Meniett didn’t help much, it works for some but not all. I have also heard of other folks using anti-depressants also but I don’t know if that indirectly helps the meniere’s or just the depression.



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Sunday, June 13, 2010

Reexamination of my meniere’s disease

After the awful time that I had the other day with my gentamicin injections I really started to wonder if I was being narrow minded about what treatments I should try. I still think that the gent injections are going to work but for how long? A year, maybe two years? I certainly need to reexamine some of the treatments and the dietary changes that others have found to work in reducing the troubles of Meniere’s disease.


The first one that came to mind was the idea that lowering your sodium would help. A few years ago I tried that but it didn’t seem to work for me. I was careful about how much sodium was in my foods but it still didn’t help. I had also heard sodium didn’t play as big a part in Meniere’s disease as was earlier considered. But I may just try to lower my sodium again (gradually!) and see if it helps. If it doesn’t that’s ok because too much sodium isn’t good for you anyway.


Another thing that I said that I wouldn’t consider is surgery, especially if it means losing my hearing in my left ear. Frankly, my hearing is bad and getting worse in that ear anyway so I shouldn’t be that much of a sacrifice. Now if I had bilateral meniere’s then it would be another story but I don’t think at this point that the meniere’s will spread into the right ear.


I take a supplement daily that has various things in it to help with the meniere’s. It has things like vitamin c, niacin, bioflavonoid, ginkgo bilboa and ginger to name a few. I may in the future try betaserc and vertigo heel. I have written many times that people in other countries besides the USA have had luck with them so I may give them a try also.

As always you have to continue to try whatever you can to get this disorder under control.



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Thursday, June 10, 2010

My latest Gent injection adventure

Well, I had my first gentamicin injection in over two years for my meniere's disease. I never forgot how painful the first set was but this time it even seemed worse. I don’t know if I can do three more shots.


I was pretty calm on Wednesday morning before I went to the doctor. My wife drove me to the Doctor’s office which takes about an hour to get there. She came along for support and also for driving home because I knew I wasn’t going to be in any shape to drive.

We didn’t have to wait long to see the doctor, which is always good. Right before he gave me the injection, he told me that he was going to do something different this time. Because of the last time that I had the shot the actual numbing of the eardrum was painful in itself so he decided to forego that and just give me the shot. He asked if that was okay. He kind of caught me off guard. I said sure that was fine.

Big mistake!

The initial shot really didn’t hurt that much but the gent going through the hole was excruciating. It all ended quite quickly but the pain was terrible. I sat in the chair with my head tilted for the required 45 minutes. Somehow I was able to take an ibuprofen but that didn’t help at all. The pain was getting worse.

After the 45 minutes were up I told the nurse that it seemed that this time the pain was a lot worse than any injection that I had before. She though that the pain was normal, but I didn’t remember it hurting that bad.

I made it home and tried to rest but my head and my ear were hurting pretty good. Finally I called the Doctor’s office to see if they could prescribe something to ease the pain. Of course there was a big mix-up and I didn’t get the medicine till today.

Anyway I’m glad that it is all over and I believe for the next injection in 2 weeks, I will definitely ask to have the eardrum numbed. I think that was the cause of all my problems.

I certainly appreciate the emails wishing me well that really helps me out. Thanks again

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Sunday, June 6, 2010

Meniere’s disease and your daily routine

As some of you know I am currently on disability. Next week I will begin a new series of Gentamicin injections, which is something I am definitely not looking forward to. Since being home for the last week my daily routine has changed and there have been changes to the way I feel.

The most positive change that I have experienced so far is less stress. That can be attributed to not being at work and worrying if I was going to get sick. Another factor is that I don’t have to make the commute to work which can be anywhere from 45 minutes to an hour and a half. The longer the commute the more worried I got about getting sick in the car.

Another positive is that I ‘m not on the computer as much as I am at work. At work I am always in front of a computer which is certainly something that can bring on an attack, at least it is for me. I’m resting more then I have been which is good, of course with sleep apnea I don’t rest as much as most people.

But there are different stresses when you are at home, like worrying about if you will ever work again. That is a big one for me because I know that I can’t have gent injections every couple of years, at some point this procedure will stop helping. In fact it might not help this time. But I have to give it try anyway. If it doesn’t work there is also surgery to consider but I am not thinking about that now.

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Wednesday, June 2, 2010

Bell’s palsy, Tinnitus and Meniere’s disease

When I was growing up I had some relatives who had Bell’s palsy. I really didn’t know what Bell's palsy was only that it had to do with paralysis of the face not to be confused with ‘shaking palsy or Parkinson’s disease.’ As for the Meniere’s disease connection it seems that folks with bell’s palsy often have tinnitus which as you know is common among meniere’s patients.

From the National Institute of Neurological Disorders and Strokes Bell’s Palsy is “a form of temporary facial paralysis resulting from damage or trauma to one of the two facial nerves.” The symptoms are facial twitching, drooling, excessive tearing, drooping eyelid and ringing in one or both ears, (tinnitus).


As for the cause, many believe that it is caused by a viral infection or herpes simplex. It is interesting that many doctors believe that Meniere’s disease is also a result of viral infection. I’m not saying that there is any connection but it certainly seems interesting.

Like Meniere’s disease there isn’t a cure but there are treatments. One treatment is using antiviral medication like acyclovir and prednisone. In a previous post I have written about how acyclovir is used for meniere’s patients as well as prednisone.


If anyone has had Bell’s palsy and tinnitus or they know of someone who does, feel free to comment.

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