Sunday, October 31, 2010

Character on TV who has Meniere’s disease

Six years ago when I had my first bout of a Meniere’s disease attack I hadn’t ever heard of the disorder. I thought that I knew what vertigo was (sort of) and that it involved being dizzy. But as far as Meniere’s was concerned I didn’t have a clue. Why is that? Because it is rarely mentioned on TV or in the press. It might also be because there is controversy as to what causes it and there is no known cure. In fact one doctor told me that Meniere’s disease is often the last resort for puzzling cases of dizziness or balance problem. So it remains a mystery and one that is rarely talked about. One encouraging sign that may help spread the word is a new TV show in the works called “Switched at birth”


The story deals with two teenage girls who were switched at birth, one going to a struggling family and the other to a wealthy family. The struggling family consists of a mother and her hard of hearing daughter, played by Katie LeClerc who in real life has Meniere’s disease and is fluent in American Sign Language. She was chosen for the role because the character she plays also has hearing and balance problems. There will also be two other actors cast who have hearing problems.

Right now the pilot is being developed by ABC Family and I certainly hope that it gets picked up as a series. It would help make folks aware of hearing problems and Meniere’s disease.

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Wednesday, October 27, 2010

Waiting for the Meniere’s attack to happen

Do you ever have a few good days and wonder when the next attack is going to happen. Maybe you will be lucky and you will be at home. And even if you are luckier the attack will only last a few moments without any throwing up. Do you spend a lot of time wondering when the next one will hit? Unfortunately I do, almost to a point that the stress might actually bring it on.


Lately I have been under more stress than I usually am, I am still on disability and I worry about that. It is a financial and emotional burden to bear but one that I don’t really have any choice. Although there are a lot of wonderful devices that are being tested right now to help cure Meniere’s disease it may be a while before I get the opportunity to get the device implanted. So the stress level is up and as I have said before stress is a trigger for me. I try to get as much rest as possible but I also have sleep apnea which makes sleeping tough.

So when I do have a few days without any attacks or light headiness I start to think that it is only a matter of time before my head will start spinning. After all these years of Meniere’s you would think that I can control my emotions but it is still difficult.

Remaining calm and not worrying about Meniere’s is something that I definitely need to work on.



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Sunday, October 24, 2010

First implant to treat meniere’s disease

Well it has finally begun; the first implant to treat Meniere’s disease was done on Gene Pugnettis at the University of Washington by Doctor Jay Rubenstein, a name that many of you are probably familiar with. Similar to a cochlear implant it is a ‘pacemaker’ for the inner ear. When an attack occurs the tiny device will go into action and hopefully stop the dizziness. It was first tested on animals and it was able to control their balance. The machine will be turned on in a few weeks to be tested when Mr. Pugnettis has an attack.


This is certainly good news and  in the future, the near future hopefully; it will become a standard practice for Meniere’s patients. For more information go to King 5 dot com which also has an informative video attached.

In a previous post I wrote about Dr. Santina work at johns Hopkins. He is also developing a device that will hopefully stop the attack as opposed to just controlling it. To read the full post go to Dr. Santina and the prosthetic inner ear.



Now is the time to be patience and follow how Doctor Rubenstein’s device is doing on Mr. Pugnettis. This is a terrific first step for those of us who `have suffered with this disorder for so many years. What a great relief it would be if this worked and our lives could go back to normal. We also have to hope that Dr. Santina’s device will be successful too.



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Tuesday, October 19, 2010

Positive results for the Labrynthectomy surgery

One of the issues that many meniere’s patients have to deal with is what type of treatment they would be willing to go through. It can be a very difficult decision because some of the treaments can cause hearing damage and balance problems, with the labrynthectomy surgery everything is removed so there isn’t any hearing or balance, at least that is what my doctor told me. In August I received a comment from Peggy who at the time was debating whether to have the surgery or not. Well, she ended up getting the surgery and she recently commented on how things are going. I am so glad that Peggy shared her story with us because it is very important to hear how folks are doing after a particular treatment.


Here is an excerpt from Peggy’s comment…

Peggy said...


Well, I went ahead and had the surgery. I was terrified, but it went extremely well. No complications at all, and the recovery has been smooth so far.


What's really interesting, David, is my doctor really listened to all I've been asking her about in recent months, and she heard my concern about destroying the whole labyrinth system. The day of the surgery, she told my husband that she was going to drill through only one of the semi-circular canals, not all of them as is usually done for the labyrinthectomy. This means I have the apparatus left for possible future use if current research comes up with a way to regrow the tiny hair cells to regain hearing, or if I ever need a prosthetic vestibular nerve (if, god forbid, the other ear gets Meniere's too).






It's been a little rough these past two weeks since the operation, but not nearly as bad as I expected. Hardly any vertigo, no nausea (because I'd already had many gentamicin treatments, so the right vestibular nerve was already used to having to take over my balance functions from the left one). I also had very little pain. But my left ear doesn't feel like it belongs to me right now, which is incredibly strange. I expect that will improve as my recovery continues. The bone around the ear is very tender, and the incision is very, very strange feeling. Not pain, exactly, but irritating. And it's scary to look at. It runs from almost the top of the back of the ear (right down the crease) and goes nearly to the lobe. It's kind of itchy and very tight as it heals.


I think it was the right thing to do. I couldn't really imagine having gentamicin injections on a regular, ongoing basis, and the nerve kept regrowing. We had tried every more conservative treatment, and I sought a second opinion. We went by the book every step of the way.


I've been able to do quite a lot already since the surgery, including having friends over for dinner and going to an art show last weekend. This week I'm going to try driving locally and go back to rehearsals with the choir I sing with.


I can safely say I'm no worse than I was before the surgery, and I have some hope that I will improve. It's very early in the recovery process, and already I feel pretty functional. So let's see how much of an improvement I can achieve.




Once again I am thankful for Peggy sharing her story with us. To read all her comments go to the following website.

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Sunday, October 17, 2010

My personal experiences with gentamicin injections

I received a comment recently about the side effects of gentamicin. Inside the email was content from a Wikipedia article about this subject. It was really quite interesting about what can go wrong with gentamicin. The thing to remember though is that gentamicin is used for other illnesses besides Meniere’s disease such as bacterial infections. There are different ways to administer it besides injections. Another good reference about gentamicin is from Drugs.com.


Here is a recap of the posts that I have written specifically about gentamicin.




The question that some people have been asking me is whether the gent injections have been a success or failure for me. It is really hard to say, in some respect I think that it has helped because my attacks don’t last as long but my balance and hearing are definitely worse and the number of attacks has increased.



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Wednesday, October 13, 2010

Tips on controlling a meniere's attack

There is one thing that I always love to hear about is home remedies to help with meniere’s attacks. Everyone who has had meniere’s for a while has a routine that they do to try and prevent an attack. Unfortunately a lot of attacks come unexpectedly so the best that you can do is to try to get through the attack without much difficulty. About a year ago I wrote a post on preventing a meniere’s attack, I received a comment the other day from Sami about some interesting things you can try to help ease the attack.




Here is an excerpt from the comment…



Sami wrote


My doctor in Syria advised me something really helpful which is to close my nose with my hands and the blow while my nose is closed and my mouth is shut, this will open all the inner canals in the ear and will help regain your balance, it really helped a lot, also, he told me to sit still and gaze on the ground and close my eyes so i will regain my balance, it also worked.


another advice was to spin against the MD spin, for example if the room is spinning left to right, you have to spin in your head right to left, the brain will get a signal indicating something was wrong and will balance it self...it also works.

Thanks Sami I appreciate the advice!

I don’t know if they will work but it would certainly be worth a try.

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Saturday, October 9, 2010

My experience with Prednisone

About a month ago I had a biopsy done on a small rash on my lower back. My doctor told me not to worry that it is probably eczema. He was right, so I was prescribed ointment to clear it up. Unfortunately the ointment made me breakout (at least I think it was the ointment cream). I went back to the doctor and I was given a shot of benadryl and a cortisone shot. I was also given a prescription for prednisone. The name sounded familiar so I went back over my Meniere’s disease blog and lo and behold I had written a post about prednisone and meniere’s disease in early 2009.


Just for a recap here is an excerpt from the post…



Prednisone is used for many different ailments that have to do with the autoimmune diseases. It can be used on tumors and inflammatory diseases. It can be administered orally or through an injection.






Since Meniere’s disease is considered an autoimmune disease, as well as other things, it makes sense that prednisone is used to treat it. My doctor never even mentioned it, but doctors often differ in how to treat a patient. I have read on forums and blogs that many people use it and found relief from it. I have also had people tell me to stay away from prednisone because of the terrible side effects.



I had only taken it for a week and the only side effects that I had was that I seemed awful down and my stomach hurt a little bit. As for my meniere’s disease I didn’t have any attacks that week but since going on it, I have had quite a few. With all the potential side effects of prednisone I hope I don’t have to take it again.



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Wednesday, October 6, 2010

Aural Fullness and Meniere's Disease

Lately I have been experiencing a lot of problems with fullness in my ears. I don't know if it has been the weather which has turned from very hot to much cooler or maybe it is just something that happened without any cause. It is difficult to say I don't know if it has contributed to my recent bouts of Meniere’s disease attacks but it certainly couldn't have helped any. The occasional times that I have tinnitus haven't really increased although it is hard to determine because fullness in the ears sometimes mimics tinnitus, at least it seems that way to me. Fullness in the ears is sometimes referred to as aural fullness.




I have written in the past that I have always had problems with my ears especially when I was younger. Earaches were a common thing for me because I always seemed to get sick and it always seemed to end up with an ear infection. My only relief was from ear drops and antibiotics. As I got older the earaches went away and the only problems that I had with my ears was when I driving or riding over the mountains. I grew up in western Pennsylvania in a small town that was at the foot of the Appalachian Mountains so high elevation was a problem for my ears. I would often experience aural fullness but at the time thought nothing of it.



Luckily I don’t get many earaches now but this fullness in my ears is unpleasant and I am worry that it is a precursor to a major attack. Hopefully it wouldn’t I’ll have to wait and see.



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Sunday, October 3, 2010

Dr. Santina and the prosthetic inner ear

Here is my email to Dr. Santina about the prosthetic inner ear.


Dear Dr. Santina,


My name is David Stillwagon and I have had Meniere’s disease for the past six years. Over the past 2 years I have been writing about my life with Meniere’s disease on a blog. I have a loyal following of readers. Quite a few of them saw the article in Popular Science about your prosthetic inner ear. Everyone is quite excited about it, hoping that someday it will help relieve the more than unpleasant side effects of meniere’s, namely the vertigo.


I think the question that most meniere’s sufferers have is this something that will benefit meniere’s patients or just those with vestibular balance problems. Any information that you can give would be greatly appreciated.


David Stillwagon

Here is Dr. Santina’s response…

Hi David,


Thanks very much for your email and for helping to keep others with Meniere’s informed.


I envision the prosthesis as having potential to be a good safety net for people who lose most/all of their labyrinth function either due to Meniere’s or due to destructive treatments performed in an effort to treat Meniere’s (e.g., gentamicin and possibly after labyrinthectomy). If we can obtain excellent results, we might someday see the prosthesis as part of the Meniere’s treatment approach, mainly via allowing earlier and/or more aggressive use of intratympanic gentamicin in one ear when the other has already lost most or all of its vestibular sensation.


There are also efforts toward using a stimulator without head motion sensors as a pacemaker to overdrive an ear during a Meniere’s attack. Jay Rubinstein and Jim Phillips are leading that effort. The early outcomes of that approach will become clear over the next year or so, as they plan to start implantations very soon.



Charley C. Della Santina, PhD MD


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