Sunday, November 29, 2009

Betahistine and Meniere’s disease in the USA

I thought that it would be important to continue on about the effectiveness of betahistine (Serc, betaserc) and why it isn’t considered as an option to treating Meniere’s disease in the USA.


First I found an interesting article from PubMed Central pertaining to betahistine and Meniere’s disease. It really isn’t a surprise but the article states that 94% of the Doctor’s in the UK prescribe betahistine for Meniere’s disease. That is amazing! In the USA betahistine is not considered effective by most doctors. Serc can be obtained through compounding pharmacies (with a prescription) and obtained from other countries especially Canada as I found out from a comment from one of my readers.

Dr. Tim Hains, an authority on vertigo and meniere’s, wrote an excellent article on betahistine in this country. It seems that serc was approved at one time in the US but for only 5 years. Apparently a lack of evidence that it was effective was the reason that it lost its approval. After reading Dr. Hain’s website it seems that he has also prescribed it to patients.

It really seems inexplicable to me why a drug that is used through out Europe to help relieve Meniere’s disease isn’t even approved by the FDA in the USA. It just makes sense that if 94% of the doctors in the UK think that it is okay why isn’t it okay over here (USA).

I am really puzzled by this.

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Wednesday, November 25, 2009

Meniere's disease and eye movement

Recently I received an email from one of my readers, Jeff, about nystagmus, which is an involuntary eye movement. He makes some excellent observations drawing on his own experiences with Meniere’s disease and the movement of his eyes.




I'm still not sure I've got a handle on what nystagmus really is and what is means (isn't it just a complex description of a symptom?), but I get two different types of eye effects depending on the severity of an attack.


With a bigger attack (less frequent for me now, thankfully) the main symptom is the 'washing machine' effect where the world appears to be spinning around me. (Occasionally it's not as strong and instead of rotation is a shift from one side to the other.) Naturally my eyes try to sort out the mess by tracking the movement for a second, until either I blink or my eyes snap back to the centre and start tracking again. I wouldn't describe this as completely involuntary, though, more of an instinctive response; if I want to I can stop my eyes tracking in which case they would drift to one side and lose focus. A relatively big attack is gone in an hour.


With a lesser attack, I get what feels like a slight side-to-side shaking of what I see, which results in a slightly blurry picture and difficulty focusing closely. Now I *would* describe this as involuntary as there doesn't seem to be anything I can do to affect it. In fact, I'm not sure that my eyes are moving at all and that this isn't something that's just happening in my brain! After about 20mins the shaking has usually gone.


These lesser attacks are a more recent development. I think they're probably less severe versions of the bigger attacks, but they do feel like something slightly different at the same time.


My own attacks have changed over the past year. When an attack occurs my eyes tend to ‘jerk” to one side as though someone had pushed my head to one side. There is a little spinning after that and I do feel very tired after the experience.


Thanks Jeff for the great comment!

Sunday, November 22, 2009

What gives you relief from Meniere’s disease?

Although there isn’t a cure for Meniere’s disease, there are many things that help with the symptoms of it. Some of those are accepted by the medical industry and some aren’t. I would like to know what gives you relief from Meniere’s disease.


As soon as you are diagnosed with meniere’s your doctor will probably talk about sodium and how it affects your meniere’s. In my case the doctor gave me extensive paperwork on what to eat and especially what not to eat to keep my sodium (salt) level low. From what I have read it does help many people to lower their sodium level but unfortunately not me. Too much salt is usually lumped into the group called CATS; caffeine, alcohol, tobacco and salt. Cutting back on all these things is probably a good idea whether you have meniere’s or not.

After the sodium comes the medicine. The one that works the best for me is antivert. Whenever I feel an attack come on I take an antivert and most of the times (not always) it works. The medicine that I take every day is valium, which helps the blood circulation. I also take a supplement that contains ginkgo, niacin, Bioflavonoids, ascorbic acid (vitamin c), ginger root and a few other things. As I have posted about before the medical community for the most part doesn’t put much store in these types of supplements but I think they help.

Betaserc or betahistine, is recommended in other countries, usually not in the USA. The opinion of what works in this country seems to differ from what other countries see as effective options for meniere’s.

If the pills and the supplements don’t help, then it is time to consider the procedures. The procedure that I had was the gent injections as I wrote in the last post it seemed to help in my case.

Of course last but not least is surgery, from the least evasive to the total destruction of the inner ear. I would give any kind of surgery much thought and deliberation. I would definitely get at least another doctor’s opinion before going under the knife. At one point last year I considered surgery but I backed down and in my case I was glad I did. It bears repeating, get another doctor’s opinion.

I am sure that I missed some of things that can be done with meniere’s. I would appreciate any comments on things that have helped you with your meniere’s treatment. Please feel free to let me know.

Thanks

Saturday, November 21, 2009

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Wednesday, November 18, 2009

The limitations of Meniere’s disease

One of my earliest posts this year was about how I couldn’t swim very much because of the Meniere’s, the thought of getting water in my ears, and then having an attack keep me mostly in shallow water. It seems that Meniere’s disease puts many limitations on your activities.


Besides swimming, driving long distances, especially by myself isn’t a good idea. My daily commute to work isn’t bad because it is only 45 minutes and the route is very familiar with me. Last year I had a couple of attacks going to work, luckily I was able to get help because I wasn’t that far from home or work. A long trip would be another story, especially if I was far from home and it took a long time to get to me.

My eight year old son loves to go on the rides at the amusement parks and the carnivals. I am definitely not going to do that. I can’t imagine what would happen if I attempt to go on some spinning, stomach churning ride. My son even though he is eight years old is starting to understand that his father can’t do some things because of my problem. And of course his mother is a good sport and tries to ride as many rides as she can.

The Meniere’s disease has also made me less flexible when I move around. I really noticed it a few years ago when I was at the beach and walking in the water. Even the smallest of waves seemed to knock me around. There are times when I feel like I am a hundred years old! Maybe some of that is my own fault for not trying to keep as active as I should.

I would like to hear from anyone on what activity meniere’s has affected in their life.

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Sunday, November 15, 2009

A year after the gent injections and short term disability

I can’t believe that it has been over a year since I had the gentamicin injections and after that being on disability. The year since then has been bumpy but I think that I am on the right track.



Just to recap last year I had four gentamicin injections, one every two weeks. Although my doctor told me that they don’t bother most people, the pain was very difficult for me to deal with, but I did. After the last shot things were good for a little while then all hell broke loose. My balance became terrible, and my driving a car was nearly impossible. My attacks were coming daily and I went on disability till the end of 2008.


At that point I thought that getting the gent injections was a mistake. All that pain for nothing. I didn’t realize at the time that what I was going through was common because it takes time for your balance to adjust to what the gent injections due, which is deaden the balance in one ear.


At the beginning of the year I went for VRT which helped me quite a bit. I realized that balance was more than just what signals my ear sent to my brain.


I still had attacks during the past years, especially during the summer after a plane flight. I can’t say for sure that it was the plane flight but it seems more than a coincidence that I had so many attacks right after the flight.


The strength and duration of the attacks this year have been drastically reduced. My attacks are a lot shorter and the recovery time is also shorter. And those are things that are definitely worth being thankful for!


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Wednesday, November 11, 2009

Meniere’s disease and age

At what age does meniere’s usually strike? Is it your late thirties, or is it between the age of 40 and 60. Does age have any bearing on Meniere’s disease?

I have read that meniere's usually occurs between the ages of 40 and 60. But it seems that a lot of people have meniere’s much earlier than that. Many of the emails that I have received are from people who have had this disability since their early twenties, which must be particularly difficult to have to deal with all the troubles of this disorder at such a young age.

A recent post of mine about carsickness and meniere's got me thinking that the beginning of meniere's could actually start when you are a child. Although I haven’t heard of many children getting meniere’s, I found this link that says that 3 percent of all meniere’s patients are in the pediatric group.

I was 46 when I was diagnosed with Meniere’s disease. In my case age really didn't have anything to do with me getting meniere's. I was in a car accident and after that my meniere's appeared. I have been told by one ENT that the accident had nothing to do with it. I don't agree with that. Especially since there is some much uncertainty about what causes meniere’s disease let along what helps to relieve the side effects.

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Sunday, November 8, 2009

Positive results for Betaserc

In the past I have written about betaserc and how it is used mostly in other countries besides the United States. Recently I received an email from one of my readers about her experiences with the drug betaserc. She has had a positive response to the drug which is terrific. She makes a very good point in that most countries accept betaserc so why doesn’t the USA?
I was so glad that Natalie shared her experiences with Betaserc.
Here is the email.


I was recently diagnosed with MD in Europe (Portugal). It's the first drug they use there (also encouraging low-sugar and low-sodium diets, obviously).

I was hesitant to take it b/c I was moving back to the US soon and knew it was not FDA approved. However, eager for relief, I decided to give it a go. 24mg's two times daily. I was encouraged to stay on it for a min. of six months before seeing full effects of the drug.

The doctor explained that this drug is best used in patients with very EARLY MD. It seems to be less helpful in patients with more advanced disease (In me recent experience, now back in the us, doctors give the drug to patients only after diet has not helped, etc. In my opinion, this drug and diet should be the FIRST things doctors should have their patients do). My European doctor explained that catching MD early, and administering this drug at high doses, can be very effective in preventing the severity and frequency of attacks and, therefore, helping prevent more advanced MD.

He told me that I would not see immediate results. I did not. However, after three weeks, I noticed less ringing/roaring and the attacks were less severe. After one month, I stabilized. Usually, when stressed- out or ill, I get intense ear pressure and, often, a headache lasting 2-12 days. However, that’s about as bad as it gets (knock-on-wood, right!). Ringing is now down to a mild hiss or ring usually only heard when it is very quiet.

This drug, has, without a doubt, given me my life back. I pray it continues to do such a great job. Even if this drug only helps , for example, 5% of MD’s patients, I think ALL specialists owe it to their patients, especially those with early MD, to prescribe this drug at a high dose (start high and then, maybe, go lower after as deemed appropriate) along with diet changes and stress reduction/management (before I went on the drug, when I was being stubborn about it, I tried the diet changes and it did little, if anything, to help me).

There has a to be a reason that in almost all other countries, this is the first drug of choice given to patients. I’m saddened that US doctors feel so strongly that it doesn’t work. Heck, chemo doesn’t work for all patients. Everyone deserves the right to try this drug. You just never know, it may work!!

You can get Serc at compounding pharmacies here in the US and out of drug stores in Canada (online, etc.).

Once again I want to thank Natalie for this wonderful comment.

Thanks

Wednesday, November 4, 2009

Preventing a meniere’s attack

Do you ever see it coming? Out of the blue, a meniere’s attack comes on and catches you off guard. Now you go into defense mode and try to stay as calm as possible and just get through the attack.

Is there anyway to stop a meniere’s attack before it starts?

One of the most familiar aspects of meniere’s is the sudden vertigo attacks where your head spins, you sweat and throw up. Some attacks last a little while others may go on for hours. After your head stops spinning do you ever think I wish I could have prevented that?

Most folks will tell you that there is no warning before a meniere’s attack and it just happens. I don’t know about that. After having this disorder for years I can tell on some days when my head is little heavy or my balance is a little off that I may have an attack that day. When this happens, I take a medication (usually antivert). I also try to remain calm and still. It is best just to relax and let the meds do their job. This works pretty well, although I still occasionally deal with the sneak attacks, like the one I had last week when I got out of the shower.

The first form of prevention that most meniere’s patients hear about is lowering your sodium. That is probably a good idea not to eat that much salt anyway, but it never really helped my meniere’s. Taking any medication that your doctor prescribes is also another preventive measure. The meds that I take on a daily basis, are a diuretic (Triamterene-hctz) and diazepam (valium). I also take a supplement each day that contains things like gingko, niacin, ginger root, ascorbic acid (vitamin c), Bioflavonoids, among other things.

Besides medicine, is there any other way to prevent a meniere’s attack? I know in my own case that not worrying about an attack coming helps me. Stress, at least I believe, will bring on an attack. I don’t think there are any studies to back that up but I feel that stress plays a part in meniere’s. I know when I am stressed out I get the feeling that the spinning is about to start.

Maybe it is just me.

To read about the beginning of my Meniere's journey click here

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Sunday, November 1, 2009

My wife’s message about my Meniere’s disease

Recently one of my readers asked me how my wife deals with my Meniere’s Disease. My wife, Melissa, wrote the following reply.


My name is Melissa Stillwagon and I am David Stillwagon's wife whom you know has Meniere's disease. During one particular episode when David was so incredibly sick he wanted to give up and quit. I remember telling him that quitting was simply not an option and that together we were going to fight this horrible affliction. I said that if one particular treatment was not successful, or a certain doctor not helpful we would seek out another treatment option or another doctor until we found the right one or a particular drug or combination of drugs that would help alleviate the symptoms he was experiencing. I reminded him to of our young son and how much he loved his Dad and always wanted him to be here to be a part of his life, and for this reason above all others we must keep pressing on and try to remain positive.

As a spouse of a Meniere's patient I understand the sheer frustration you experience. I know what an emotional rollercoaster ride it is not knowing when the next attack might strike or when I will receive that dreaded call that he is sick or in the process of being transported to the hospital. The fear is always present and when he does get sick there is that overwhelming helplessness that engulfs you because you know there is nothing that you can do but stand by and wait until the attack subsides or he receives medical attention and is subsequently stabilized. I remind Dave to try hard to focus on the positive things in his life and look to the future in hopes that one day there will be a cure or at the very least an effective drug to minimize the severity of the disease.
I hope this helps.

My wife’s support has meant everything to me through this difficult time.