Sunday, January 31, 2010

Meniere’s Disease and Topamax

It seems that I learn something new about medications that help with Meniere’s disease everyday. I received a comment from one of my readers regarding the medication Topamax, which is a medication that I hadn’t heard of (at least I can’t remember if I did). As I have written on an earlier post there seems to be a connection between migraines and Meniere’s disease.

Laura writes

I have had violent Meniere’s for quite a few years, one thing that helped reduce the number and severity of these attacks was an anti migraine medication Topamax... it reduces the fluids in the ears, nose and throat. sort of dries everything up. I find that Serc and that have kept me free of those big attacks for over 2 years. Before I was getting attacks every week. You eventually get used to the eye dryness... my meniere’s specialist is quite interested in trying others on this.

Topamax is anti-migraine medicine that is taken daily to prevent migraines. It has also been used to treat epilepsy in children. Like other medications there are side effects to this drug such as numbness and tingling, fatigue, taste change and weight loss among other things. Talk you your doctor to see if it is right for you.

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Wednesday, January 27, 2010

Meniere’s disease and brain fog

Do you forget things more then you should? Do you have times when you just can’t concentrate on what you are doing or sometimes do you forget how to do the easiest things? If you are older (like me) you might think that age creeping up on you. But in reality it might be another side effect of Meniere’s disease, usually referred to as brain fog.

Why would Meniere’s disease cause any problems to your ability to think?

I am not a doctor so my observations are not scientific, just my observations. After a particularly bad attack my mind seems to be numb, I can’t really concentrate very well and my memory isn’t too good. Usually I will become a little more cognitive after a couple days post attack. As for the reason, I am not sure. It could be the uncontrollable spinning for a long time that shakes up my senses. For those who don’t have meniere’s it might not seem that bad to have your head spin, but it is!

Another factor could be the medicine that I take to recover from the attacks, most of them are sedatives. If you take pills on a regular basis to combat the meniere’s, your brain can’t help from being effected by it.

As for any other reasons for the brain fog, it could depend on the individual. I know that I am not the only one who has had brain fog because I have read other reports for meniere’s patients that have had the same experiences that I have had.

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Sunday, January 24, 2010

Meniere’s disease and positive thinking

I am very fortunate that I receive a lot of very informative and thought provoking comments from this blog. I received one a couple of weeks ago from one of my regular readers about his experience with therapy and his meniere’s. although I don’t consider meniere’s as something that you can just stop by changing the way you think, I do think that keeping a positive outlook is very important.

This is from Jikke DeGroot

first of all: thank you for your weblog about meniere's disease. It is very helpful. It provides information, experience and hope. That is a rare combination ;-).

I would like to tell you about something I'm trying at the moment. I have had M for quite a few years now. The first attack probably was somewhere in 2004, after that I had one or two attacks a year (without knowing what it was), but for two years now I have had attacks every few weeks which leaded to an official diagnosis of M.

From september on I'm in a really bad episode. The doctors have done some tests again, and according to them one of my balance systems (right ear) is not functioning any more. They said that that should mean that the attacks should lessen (which unfortunately is not really happening yet..), but also that it will never come back to normal again.

So, the next step they advised me about, is to have my brains learn that they shouldn't listen to that particular ear any more. I know it sounds crazy, but on the other hand it may be very logical. The doctor said that your brain gets multiple signals involving your balance (from your ears, eyes, feet, muscles in the neck etc) and that it uses these signals to define your balance at that moment. With M one of those signals is wrong which causes the vertigo attacks. What the brain needs to learn is that it shouldn't use that broken signal any more in its calculations. So that's what I'm working on at the moment.

The way to do it is a bit complex. First you should try to do as much as is possible without creating actual attacks. That's always a fine line to walk on, so it goes wrong once in a while, but that's ok. Second, every time you feel an attack coming on, you nearly literally tell yourself: this is just a wrong signal, stop listening to it. For me it helps to keep the panic away and that should do the trick. When you panic, the brain goes into a frantic response and does what it is used to do (which means using all the signals, including the wrong one). If you don't panic, it will take the time to correct itself. So attacks are a lot shorter. And, according to the doctor, after a few months of learning it should lessen the number of attacks as well.

I started this a few weeks ago, so I don't know if it will work on the long run. I do know that the few attacks I had were a lot shorter, from 1-2 hours lying in bed to 5 minutes sitting at the table. For me that's enough to keep trying...

(The doctor is a clinical psychology doctor at an academic hospital)

Have you ever heard about this from others?


Thanks Jikke

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Wednesday, January 20, 2010

Amazing statistic about Meniere's Disease

I found out something rather amazing about Meniere’s disease. According to there are two million people in the USA with Meniere’s disease. 2 million people with meniere’s, 1.4 with epilepsy and a half a million with Parkinson’s disease. So why is it that relatively few people know about meniere’s?

The first reason is that the disease itself is so undefined. At least with other serious diseases the medical field has a better understanding of causes and possible treatments. With meniere’s there is no cure and like I have said a million times it is difficult to say what brings on the attacks.

People with meniere’s look like they are okay most of the time, at least that is the perception with a lot of people. Those who aren’t familiar with meniere’s think that you get a little dizzy or light headed for a short period of time then things are back to normal. But that isn’t the case, the attacks could happen at any time and the spinning and the vomiting are something you just can’t describe. Another thing that people don’t realize is that after an attack you just don’t go back to what you were doing. I have been laid up for days after a particularly bad attack.

One more reason is taken seriously and this is important, not all doctors think that it is that difficult to live with. As a matter of fact one ENT told me to do exactly that, LIVE WITH IT. Thankfully I didn’t listen to him! Another doctor told me that at least I wouldn’t die from it. Well, that is good to know when you are lying face down on the ground and throwing up!

Sunday, January 17, 2010

Update on the valium post

Recently I wrote a post questioning whether valium is an effective treatment for Meniere’s disease. Just to recap I take Valium and it seems to work for me. Here are a few comments that I received.

From Nicki  (Nicki of the peripheral view)

Valium has been a real lifesaver for me. i carry it with me everywhere i go. when i feel an attack coming on, I put 1/2 of a 2mg tablet under my tongue and that's usually enough to stop it. if i feel i need more, I’ll take the other half. i don't take it on a regular basis. i do take klonopin on a regular basis. My doc explained it to me like this. Valium works very well because it works quickly but it also leaves your system quickly. Where as klonopin works slowly but stays in your system a long time. i take 0.5mg 3x/day. That medication got me through another year of teaching. This year, I’ve not been so lucky. i remind myself that this will pass. this disease will go back into "remission" at some point. i did very well for 9 years. Only 2 vertigo attacks and both of those happened because the tube came out of my ear and my meniett wasn't working.

In my opinion, valium is good to have around just in case. good luck to you!

bigdaddythinks (bigdaddythinks)  said...

David, I'm on pretty much the same plan you are except for the Antivert. I take T-Bio 2/X per day. I take Valium (2mg pills) only on the days when I absolutely must remain upright. For instance, I started graduate school six days ago. The entire program is through distance learning except this first week where I have had to travel to the campus and study 12 hours per day for seven entire days. It's important to me to participate so I took a Valium every morning. I had planned to take a second in the afternoon just in case but I haven't needed to. There were two times when I thought I might need to go lie down but it passed. When I get back home and into my normal life again I might experiment with not taking valium on days when I normally would, just to see what happens. I'm not worried about getting addicted to valium and it doesn't make me sleepy at all. But I'm also doing a bunch of different things for my MM and I'd like to start finding out what works and what doesn't. I need a prescription for Valium so I thought I'd start there. Then again, I know it works so maybe not. When I need my pill I'm also going to try Nicki's trick of taking my pill sublingually. I bet it tastes like crap but if it's fast acting I can endure the taste. I've found that I have only about 15 minutes' warning for attack and I know taking pills under the tongue makes them absorb faster.

Thanks for the comments about Valium.

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Wednesday, January 13, 2010

Are you sure that you have Meniere’s Disease?

The doctor that I had an appointment with after my first attack wasn’t completely sure what I had. I described the spinning and the nausea. I also told him about being so tired. Meniere’s disease wasn’t the first thing that he thought that I had.

Meniere’s disease isn’t rare but it isn’t has common as other disorders. In reality it is even difficult to say how many people have it. The reason that I think that it is difficult is because it is so hard to make sense of. There isn’t a cure, although there are things that you can do to try to control it (not always successful!). And as far as preventing it from happening is impossible. I know that ENT’s tell you to cut back on the salt but that doesn’t help everybody, at least it didn’t help me.

Surprisingly enough there are some diseases that have similar side effects to meniere’s. Vertigo can be a symptom of Lyme’s disease, although there are a number of other symptoms that don’t happen with meniere’s. A type of syphilis called otosyphilis can resemble Meniere’s disease, for an in depth explanation of otosyphilis Dr. Hain has an article on his website. Acoustic neuroma (tumors) can also have similar symptoms too.

One doctor told me that Meniere’s disease is usually the verdict after every possible disease or disorder is ruled out. Hopefully if you know someone who is experiencing dizziness and nausea it will determined as something besides meniere’s.

I wouldn’t want this sickness on anybody.

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Sunday, January 10, 2010

Are you in control of your Meniere’s disease treatment?

In a past post I wrote how important it is to find the right doctor when you have Meniere’s disease. Not only is that important but it is also essential that you take an active part in controlling your treatment of Meniere’s disease.

Now I am not saying to stop going to a doctor what I am saying is not to go into any visit without being up to date on meniere’s. And really you should think this way about any illness that you have, information is very powerful and puts you in a position where you can make informed decisions.

As I have written in the past I went to many doctors before I found one that I was comfortable with and even with him I didn’t agree with everything that he said. After I thought that my gent injections had failed, he suggested surgery; I did some research on it and even got a second opinion from another doctor. I decided against the surgery. I was glad that I did because I found out that the gent injections finally did work.

Why it is especially vital to find out all that you can about meniere’s is the fact that there isn’t a cure. That tells me that there is still a lot to be learned about why this occurs and how it can be stopped.

So read as much as you can on meniere’s and don’t be afraid to ask your doctor questions. If they aren’t responsive to your questions there are other doctors that will answer them.

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Wednesday, January 6, 2010

Does valium help with Meniere’s disease?

Last year I wrote a blog post about valium and Meniere’s disease. Since then I have read that some people haven’t had much luck with it or they are worried about the sedative effects that it has. My question is does valium help with Meniere’s disease?

In the middle of last month my prescription of valium ran out. I had already called in one emergency refill and I knew that the doctor would insist that I come in before getting another prescription. I really didn’t have the time last month to schedule a doctor’s appointment so I thought that I would forego with taking the valium till I could get a prescription from the doctor.

In retrospect it probably wasn’t a good idea. Just the thought of not taking the valium stressed me out. I worried that it was a vital part of my medicinal routine that not taking it would lead to me having an attack. I had taken valium on a regular basis since the beginning of last year, although I can’t say for sure I think that it has helped me.

Over the couple of weeks that I didn’t take valium I certainly felt a little light-headed than usual and I definitely took more Antivert than I normally do. And that isn’t a good tradeoff because the valium, at least to me, doesn’t leave me tired like the Antivert does. I was also taking Phenergan which is stronger than the Antivert.

Finally I decided to bite the bullet and go to the doctor and get my prescription of valium. I don’t know that it is helping me but I don’t want to break up the routine that I have had over the past year. All things considered 2009 wasn’t that bad for meniere’s.

I would really like to hear from anyone who has had good, bad or indifferent experiences with valium.

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Sunday, January 3, 2010

Not letting the Meniere's hold him back!

I recently received a comment from a reader that doesn’t let the meniere’s hold him back. I don’t know if I could do the things that he does even if I didn’t have meniere’s. This is from Allie Largent, San Antonio, Texas

David, I have Meniere’s and I am a triathlete! You can still do it! You just have to be careful about it! I am on some medication that takes care of the worst of it - and there are some days where it is out of the question - at least the swimming and the running - but I can always cycle on my wind trainer in the garage. I have found that if I do it early as soon as I get up and break a sweat for some reason my side effects are lessened GREATLY!

I have worked through he worst of it and swam with a full blown episode but moved to the shallow end of the pool - because I freaked out a bit. But I learned - earplugs a really good set are the trick there and to make sure no cold water goes in the ears! And worst case scenario if I did the breast stroke I could manage to finish the workout. Also running - I tend to run outdoors more because the treadmill just seems to make it really bad - unless I can stand to focus all of my attention on just one point the entire time.

But don't give up! I did much better after this hit because I worked through it - the doctors were amazed that I had figured out some of the little tricks you can use to keep your balance and when it really got bad before my medicines were adjusted I did have to back off almost completely - but when I did the vertigo that goes with this just worsened - so I kept up the cycling and doing whatever I could. But I swear - the exercise in the morning really helps and when I don't do it - I am a little unstable and have a much harder time.

Get back to it - you will feel better!

Keep up that great spirit Allie! You are an inspiration to us all.