UPDATED 2/26/2016
What is it?
Serc is a brand name drug in Europe and other countries. It's primary active component is betahistine hydrochloride. It is a frequent first line treatment for Meniere's Disease. Many experts believe it may act as a vasodilator and helps your inner ear reduce the hydrops that they believe cause many of our symptoms.
What about allergies, isn't it a histamine?
Serc is histamine but it is a type of it that does not increase allergies in most people. In fact, Derebery (an allergist AND NeuroTologist) says that it can theoretically cause your body to produce less histamine related to allergies, and even help your allergy symptoms slightly. Because of the way it acts according to these doc's, they say antihistamines and other anti allergy med's are allowed as SERC acts on a different receptor.
How to get it.
It is not available in the US under it's brand name – which is why it is not often prescribed here in pill form - but it is legal for a compounding pharamcist to make it for you from scratch in generic form.
I got my SERC from a compounding pharmacy in Pasadena, CA and I DID have it covered by my insurance I had a $10 copay each month. It took some letters and pushing to get insurance to help me with it.
They didn't know what it was and others may not, so I recommend printing off information about it from this link (Dr. Timothy Hain, Meniere's expert, wrote this excellent breakdown of the drug and why and when use uses it for Meniere's treatment)
Go to http://www.dizziness-and-balance.com/treatment/drug/serc.html
The pharmacy found it pretty quick from a supplier.
I took 16mg 3 times a day, but these days higher doses are being tried, again I'd refer you to Dr. Hain's page for a breakdown of why. He updates it often.
If your ENT gives a bunch of guff about it not being legal (which isn't true if you get it compounded) or if your still not sure and are uncomfortable ordering it from a pharmacy, my ENT, Dr Derebery, also does histamine shots 2-3 times a week instead as a replacement for SERC if her patients have trouble getting it. So either way the treatment is the same and she provides it. The shots are more of a pain (literally) though and I don't know about you but I'd rather just take a pill. Not every Meniere's doc would advocate these shots as an alternative to traditional betahistine tablets (it's confusing, I know... )
Effectiveness:
As to whether it works... well... it is one of those drugs that the jury is kind of still out on. Dr Derebery and Dr T Hain - both famous MM doc's - prescribe it for Meniere's Disease, and both aren't sure why it works, or if it even does in most cases. Dr Hain posted his whole thought process on his website (link is above and below). Now he says that meclizine and serc aren't compatible, Dr Derebery says they are, since she is an allergist I go with her opinion, but that is just my opinion to go with her opinion.
Long story short... take it, and see what happens. It, generally, won't hurt you.
Chad
Links:
Drug facts on SERC
Dr T Hain's opinion on betahistine (updated 1/2016)
Link to the House Ear Clinic where Dr Derebery is at: http://www.houseearclinic.com
Thursday, August 04, 2005
Tuesday, June 21, 2005
Update since Starting Meniett
Since May 9th I have began the following treatments: Started doing the Meniett device at least twice a day, started taking 16mg of Serc (betahistine hydrochloride) three times a day, started allergy densensitization injections on a weekly basis.
Since around May 15th, I have had one Meniere's attack that was brought on by my bad behavior - I drank coffee, even though I know I'm not supposed too!
Other than that attack, I have had no Meniere's symptoms in my bad ear related to hydrops and my tinnitus has improved drastically to the point where it is barely audible and my hearing has gotten quite a bit better.
The Meniett seems to help keep a general state of equilibrium going in the ear and I believe the Serc is helping with excess fluid as well and is a big part of the tinnitus improvement. I don't know how long this will last or whether or not for sure which treatments are helping most, but I thought this update may be helpful.
Since around May 15th, I have had one Meniere's attack that was brought on by my bad behavior - I drank coffee, even though I know I'm not supposed too!
Other than that attack, I have had no Meniere's symptoms in my bad ear related to hydrops and my tinnitus has improved drastically to the point where it is barely audible and my hearing has gotten quite a bit better.
The Meniett seems to help keep a general state of equilibrium going in the ear and I believe the Serc is helping with excess fluid as well and is a big part of the tinnitus improvement. I don't know how long this will last or whether or not for sure which treatments are helping most, but I thought this update may be helpful.
Thursday, June 09, 2005
Treatment Steps for Unilateral MM - A Summary
The PDF file located HERE is intended as a basic summation of the traditional steps of treatment for unilateral (in one ear only) Meniere's Disease. The steps included do not list alternative treatments such as accupuncture etc...
This resource is intended as a discussion point you can bring with you to your doctor, and is not intended as a complete list of ALL available treatments, just the most common.
Visit http://www.menieresinfo.comfor more information on Meniere's and the steps presented here. Visit www.menieres.org to find a community of folks to discuss these options with.
Bilateral patients may also follow many of these steps, but their path of treatment may vary depending on the severity of their symptoms. I feel bilateral patients will still find a lot of value in reading and considering the steps presented.
This document is open to discussion. I'd love to hear feedback on it so I can improve it. Is there something you consider crucial that is missing? What is it? Do you think something shouldn't have been included? Why?
Please share your thoughts in the comments section of this post.
This resource is intended as a discussion point you can bring with you to your doctor, and is not intended as a complete list of ALL available treatments, just the most common.
Visit http://www.menieresinfo.comfor more information on Meniere's and the steps presented here. Visit www.menieres.org to find a community of folks to discuss these options with.
Bilateral patients may also follow many of these steps, but their path of treatment may vary depending on the severity of their symptoms. I feel bilateral patients will still find a lot of value in reading and considering the steps presented.
This document is open to discussion. I'd love to hear feedback on it so I can improve it. Is there something you consider crucial that is missing? What is it? Do you think something shouldn't have been included? Why?
Please share your thoughts in the comments section of this post.
Tuesday, May 24, 2005
Vest Rehab making a difference
My Vestibular rehab exercises are making a huge differnce in my ability to cope with the loss of my balance center on my left side. The more I challenge it and practice the easier it is for me and the less dizzy and naseous I feel. I can't recommend this enough for Meniere's patients that have had some of there vestibular function permanently destroyed.
We have moved up the complexity of the exercises as well and I am doing some walking and head movement exercises to go with the eye ones I posted previously.
We have moved up the complexity of the exercises as well and I am doing some walking and head movement exercises to go with the eye ones I posted previously.
Allergy Testing
As I mentioned below various studies done show that aggresive allergy treatments including desensitization can help reduce the severity and frequency of Meniere's attacks.
My neurotologist is also an allergist and is having me undergo comprehensive allergy testing right now. What does comprehensive mean?
It means:
Over 175 under the skin injections of small amounts of allergin to see if I react (my doc says these injections are the absolutely most accurate way of testing for allergins and that the "prick" tests or blood tests really don't show all allergies present for most people)
Food and inhaled allergies are both being tested
Once they discover what I am allergic to they make up a shot that includes all those allergins that I inject at home once a week. This shot desensitizes my body to the allergens and greatly reduces there ability to affect my body. This reduces inflammation and stress on the inner ear.
My prick tests and blood test showed no active allergies, however when there is a lot of pollen in the air, etc... I DO react so I wasn't sure that was correct. My skin injection tests showed a strong allergic reaction to pollen and certain trees and molds. So I too feel it is much more accurate as a test.
My neurotologist is also an allergist and is having me undergo comprehensive allergy testing right now. What does comprehensive mean?
It means:
Over 175 under the skin injections of small amounts of allergin to see if I react (my doc says these injections are the absolutely most accurate way of testing for allergins and that the "prick" tests or blood tests really don't show all allergies present for most people)
Food and inhaled allergies are both being tested
Once they discover what I am allergic to they make up a shot that includes all those allergins that I inject at home once a week. This shot desensitizes my body to the allergens and greatly reduces there ability to affect my body. This reduces inflammation and stress on the inner ear.
My prick tests and blood test showed no active allergies, however when there is a lot of pollen in the air, etc... I DO react so I wasn't sure that was correct. My skin injection tests showed a strong allergic reaction to pollen and certain trees and molds. So I too feel it is much more accurate as a test.
Tuesday, May 10, 2005
ENG Results and Strategies
My ENG showed that my left ear has lost 96% of measurable balance function. I've only lost 45% of my hearing in that ear however.The doctor said that was very interesting and that she doesn't usually see such a high loss of balance vs hearing.
My right ear is still 100% on both hearing and balance.I was very surprised at how much balance function has been destroyed, as I am really compensating very well and didn't think that much was gone! I am continuing at my vestibular rehab and really hope to strengthen that compensation even more.
The ENG did make me dizzy of course during the test, but I didn't have an attack afterward, I was just generally unsteady for a little while.I got the tube put in my ear for Meniett and I start the device tomorrow morning. Don't really know what to expect. I assume that even though I've lost almost all of my balance function that MM could still cause vertigo attacks in the bad ear, and hopefully the Meniett will help me preserve the hearing I have left.
And of course, I've explained to my right ear that going bilateral, would really not help me out, and have asked it as nicely as possible to try not to do that...
My right ear is still 100% on both hearing and balance.I was very surprised at how much balance function has been destroyed, as I am really compensating very well and didn't think that much was gone! I am continuing at my vestibular rehab and really hope to strengthen that compensation even more.
The ENG did make me dizzy of course during the test, but I didn't have an attack afterward, I was just generally unsteady for a little while.I got the tube put in my ear for Meniett and I start the device tomorrow morning. Don't really know what to expect. I assume that even though I've lost almost all of my balance function that MM could still cause vertigo attacks in the bad ear, and hopefully the Meniett will help me preserve the hearing I have left.
And of course, I've explained to my right ear that going bilateral, would really not help me out, and have asked it as nicely as possible to try not to do that...
Sunday, May 01, 2005
A decision on the next level of treatment Meniett vs Surgery
As I detailed below, the level and frequency of my symptoms increased in Dec/Jan of '04.
When I visited my doctor's they recommended the next step as endo sac surgery (of which there are several types - I'll detail which they thought was best) or they said I could try the Meniett Box. Although they wouldn't make any guarantees about the Meniett and they said they are unsure why it works and don't feel the full weight of evidence is behind it yet.
The endo sac surgery being recommended by the House Ear Clinic was not your typical endo sac decompression or shunt. Rather, they have begun to believe that the sac itself may contain some of the cells responsible for causing the excess fluid build it up that they believe is the cause of symptoms in idiopathic endolymphatic hydrops version of Menieres (which is what they believe I have). As a result, while they do put a shunt in the surgeon told me he also typically scars the endo sac up quite a bit while he is in there in an attempt to destroy the cells he believes are causing some or all of the fluid production.
I had never heard of this version of endo sac surgery before. While the surgeon I spoke to is claiming 75% success rates anecdotally with this approach, he has not published a study on it. If he is right and the offending cells are located in the sac, and destruction/scarring of the sac will destroy those cells that is quite a find! But, at this point I believe it is only a guess (though a highly educated one) on his part.
I also purchased a book that discussed in detail the pro's and con's of endo sac surgeries (published in 1998) called "Treatment Options for Meniere's Disease, Endolymphatic Sac Surgery Do It or Don't Do It" by Arenberg and Graham. Got it for 10 bucks on eBay. The long shot of the book is lots of really smart ear doc's don't agree about the effectiveness of the surgery.
Two studies with in the last year show good results in testing the Meniett device and anecdotal evidence I've collected from menieres posting groups, etc... is also very positive for many people on the device. More people seem to be happy with that vs surgery, at least at first.
The Meniett is not thought to help everyone, but neither does endo sac decompression. I figured if I was going to start something new it should be the thing the doesn't require anyone cutting my inner ear open.
So on May 9th, I am starting the Meniett. I'll post here what I think of it, what it feels like to use it and if I have any correlating increase or decrease in symptoms.
I am ALSO getting thorough allergy testing done and as indicated by my doctor I am going to start allergy desensitization shots. These seemed to help me in the past, and allergy mitigation is starting to show a lot of promise in decreasing the severity and frequency of Meniere's symptoms on patients who have allergies.
When I visited my doctor's they recommended the next step as endo sac surgery (of which there are several types - I'll detail which they thought was best) or they said I could try the Meniett Box. Although they wouldn't make any guarantees about the Meniett and they said they are unsure why it works and don't feel the full weight of evidence is behind it yet.
The endo sac surgery being recommended by the House Ear Clinic was not your typical endo sac decompression or shunt. Rather, they have begun to believe that the sac itself may contain some of the cells responsible for causing the excess fluid build it up that they believe is the cause of symptoms in idiopathic endolymphatic hydrops version of Menieres (which is what they believe I have). As a result, while they do put a shunt in the surgeon told me he also typically scars the endo sac up quite a bit while he is in there in an attempt to destroy the cells he believes are causing some or all of the fluid production.
I had never heard of this version of endo sac surgery before. While the surgeon I spoke to is claiming 75% success rates anecdotally with this approach, he has not published a study on it. If he is right and the offending cells are located in the sac, and destruction/scarring of the sac will destroy those cells that is quite a find! But, at this point I believe it is only a guess (though a highly educated one) on his part.
I also purchased a book that discussed in detail the pro's and con's of endo sac surgeries (published in 1998) called "Treatment Options for Meniere's Disease, Endolymphatic Sac Surgery Do It or Don't Do It" by Arenberg and Graham. Got it for 10 bucks on eBay. The long shot of the book is lots of really smart ear doc's don't agree about the effectiveness of the surgery.
Two studies with in the last year show good results in testing the Meniett device and anecdotal evidence I've collected from menieres posting groups, etc... is also very positive for many people on the device. More people seem to be happy with that vs surgery, at least at first.
The Meniett is not thought to help everyone, but neither does endo sac decompression. I figured if I was going to start something new it should be the thing the doesn't require anyone cutting my inner ear open.
So on May 9th, I am starting the Meniett. I'll post here what I think of it, what it feels like to use it and if I have any correlating increase or decrease in symptoms.
I am ALSO getting thorough allergy testing done and as indicated by my doctor I am going to start allergy desensitization shots. These seemed to help me in the past, and allergy mitigation is starting to show a lot of promise in decreasing the severity and frequency of Meniere's symptoms on patients who have allergies.
Thursday, April 21, 2005
Vestibular Rehab Therapy
I don't have much to say about vestibular rehabilitation therapy yet, because I just started this morning. However, I am hopeful that it will help me deal with the range of MM issues I deal with in relation to dizziness.
Today was hard though. My therapist was a nice guy named Meynard, who put me through some diagnostic tests and taught me some exercises. The exercises were primarily focussed on the eyes and ocular movement. After I was done my balance system was definitely aggravated! I had a moderate attack this morning I think partially because of the challenges involved. That is no reason to give up though. I assume it will be difficult before it gets better.
Go to http://ourmedia.org/node/7937 to look at a PDF file of the exercises he asked that I do.
Today was hard though. My therapist was a nice guy named Meynard, who put me through some diagnostic tests and taught me some exercises. The exercises were primarily focussed on the eyes and ocular movement. After I was done my balance system was definitely aggravated! I had a moderate attack this morning I think partially because of the challenges involved. That is no reason to give up though. I assume it will be difficult before it gets better.
Go to http://ourmedia.org/node/7937 to look at a PDF file of the exercises he asked that I do.
A word about doctors
If you have Meniere's Disease your care should be coordinated by a Neurotologist. This is a special type of Ear Nose and Throat doctor who specializes in neurological and ear disorders.
I feel very strongly this is what you should do. Even if you have to travel and can only see them once in a blue moon, you should see a neurotologist. Not a regular ENT, certainly not just your primary care physician - nope - you should see a neurotologist. There are a number of resources on the web to help you find one. Start with my links post below.
I can recommend through personal experience the following two doctors:
Dr David Wilson - Portland, Oregon
Dr Jennifer Derebery, Los Angeles, CA
Second hand I've heard nice things about Dr. Black in Portland, OR as well.
If I experience more doc's and feel I can recommend them, I will post their information.
Why do I like these docs? Because they are neurotologists who are very, very familiar with Meniere's and deal with it every day. Dr Wilson is very up on the latest research in the field and Dr Derebery is actually leading and doing research in the field. I guarantee most regular ENT's do not have this background.
They both LISTEN! Dr Wilson especially will take a lot of time with you if you need it. Dr Derebery is often pressed for time, but if I ask a question or need further explanation, she stays and provides it with no complaints. I've gone out of my way to be very educated on this topic. And although I am a layperson I can put a doc through their paces with my questions. Both of these folks don't mind, and answer quickly and authoritavely with answers that reflect their opinions of the latest info out there. I also bring my wife with me to these appointments. She is a Registered Nurse and works in a complex clinical setting at a major hospital. She agrees with my opinion of these docs.
I have had a few experiences with traditional ENT's who were not this way at all and were complete jerks to me. I won't name them here, but they weren't neurotoligists anyway, and I think I've established my opinion on that!
I feel very strongly this is what you should do. Even if you have to travel and can only see them once in a blue moon, you should see a neurotologist. Not a regular ENT, certainly not just your primary care physician - nope - you should see a neurotologist. There are a number of resources on the web to help you find one. Start with my links post below.
I can recommend through personal experience the following two doctors:
Dr David Wilson - Portland, Oregon
Dr Jennifer Derebery, Los Angeles, CA
Second hand I've heard nice things about Dr. Black in Portland, OR as well.
If I experience more doc's and feel I can recommend them, I will post their information.
Why do I like these docs? Because they are neurotologists who are very, very familiar with Meniere's and deal with it every day. Dr Wilson is very up on the latest research in the field and Dr Derebery is actually leading and doing research in the field. I guarantee most regular ENT's do not have this background.
They both LISTEN! Dr Wilson especially will take a lot of time with you if you need it. Dr Derebery is often pressed for time, but if I ask a question or need further explanation, she stays and provides it with no complaints. I've gone out of my way to be very educated on this topic. And although I am a layperson I can put a doc through their paces with my questions. Both of these folks don't mind, and answer quickly and authoritavely with answers that reflect their opinions of the latest info out there. I also bring my wife with me to these appointments. She is a Registered Nurse and works in a complex clinical setting at a major hospital. She agrees with my opinion of these docs.
I have had a few experiences with traditional ENT's who were not this way at all and were complete jerks to me. I won't name them here, but they weren't neurotoligists anyway, and I think I've established my opinion on that!
My current diagnosis/state and treatments - read this first
I have unilateral (in one ear only) Meniere's Disease in my left ear. I had my first Meniere's (Meniere's is referred to as MM from now on, not MD, because then you'd think I was talking about a doctor :-) attack in November of 2000. I had severe rotational vertigo for about 6 hours and vomited so hard and so often that my eyes turned red due to blown blood vessels.
What causes Meniere's Disease? Read this link for an excellent summary. It is my own feeling that I have traditional endolymphatic hydrops - but that is just a guess.
About every 4 or so months after that I would have another bout of attacks, they usually only lasted one day, but sometimes more. In late 2001 tinnitus and accompanying gradual hearing loss began.
In 2002 I began getting allergy shots to desensitize myself to allergy, since it seemed that allergies made my symptoms worse. This is now a fairly common treatment to try and control MM symptoms, or at least reduce them in MM patients who have allergies. (See Dr J Derebery's study on this treatment).
As many MM patients do, I went into remission for a year and a half. I DO NOT know if the allergy treatments helped cause my remission, but it seems likely they at least helped. There is no proof of that though.
In 2004 my symptoms starting coming back more frequently. In August of '04 and then again in December of '04/Jan '05 I had very severe attacks with accompanying rotational vertigo, and nystagmus of the eyes. My hearing continued to decline in my left ear and is currently at about a 50% loss.
After the attacks in Jan I became sicker on a baseline basis. In other words I am now at least a little dizzy every day. I am having light to moderate attacks more often. These attacks do not disable me too badly and do not have rotational vertigo, but they are very very uncomfortable (imagine spinning around 15 or 20 times and then trying to walk a 1/2 mile. That is how it feels for hours at a time) and they make walking difficult.
For the last year and a half I have not been on allergy shots because I moved to California and left my regular doctor in Portland, OR where I am from. As allergens have become frequent in the last two weeks I am having allergy symptoms - stuffy nose, sneezing, etc... - and my MM symptoms have kicked up so that I am having moderate attacks almost every day in afternoons.
So - What am doing to address all this?
TREATMENT
* First - I started with the typical stuff for MM patients: started a low sodium diet and began taking a diuretic (dyazide). I have also had to stop any use of caffeine and nicotine. (I REALLY miss caffeine... sigh...)
* Then I started allergy shots because I have moderate allergies. As I mentioned above I have ended those, but am now going to start them again in the next few months. I hope they have somewhat of the same mitigating effect that they did before!
* I take meclizine (also known as "antivert") and occasionally xanax as recommended by my doc's as a method to try and control the dizziness and attacks. Meclizine helps, but it has become less effective since January due to the ongoing damage in my inner ear.
* I am trying to lose weight and exercise more - who isn't right? :-) - but in my case I really feel these things will help me feel better on a daily basis. I feel the more I challenge the disease the more I will grow used to it and be better able to handle attacks.
* In the same vein I have started (just today in fact) vestibular rehabilitation therapy. This is a form of physical therapy that teaches people with constant dizziness exercises they can do to help them cope with the sensations and to help them challenge their systems so they can become more functional. See my next post for my first impressions of this.
* Finally I am currently taking SERC (betahistine hydrochloride). I take 16mg 3 times a day. It is theorized that taking or injecting histamine can help the inner ear deal with excess fluid. SERC has been approved for use in Europe and Canada for a number of years and is actually the first level of treatement along with a low sodium diet in those countries. SERC is not legally sold as a brand name drug in the US due to a squabble between the main manufacturer of the drug and the FDA over paperwork. Britain, France, Canada, etc.. have all found the drug to be safe - that is good enough for me. It IS legal in the US to buy SERC if a compounding pharamicist makes it for you from scratch. This is what I do, and my pharmacist has even talked with my insurance and arranged to have it covered! CLICK here for more SERC info.
* I am carefully considering the Meniett Device, but am leaning towards not trying it. I can explain why, but it would be in another post!
Since January I have seen my doctor (Dr Jennifer Derebery at the House Ear Clinic) and she has recommended I start to consider some more extreme options because it seems my MM is progressing quickly right now. Her first suggestion is shunt surgery. On May 9th I am having an ENG test (look up more info on this test at menieresinfo.com) to determine the full extent of the damage to my balance currently to help me determine if I am a candidate for this surgery. See a separate post on this surgery above.
The surgery decision will be quite momentous and I'm not sure how to feel about it, but we'll see.
That is a basic description, I'll edit and update this post if necessary.
What causes Meniere's Disease? Read this link for an excellent summary. It is my own feeling that I have traditional endolymphatic hydrops - but that is just a guess.
About every 4 or so months after that I would have another bout of attacks, they usually only lasted one day, but sometimes more. In late 2001 tinnitus and accompanying gradual hearing loss began.
In 2002 I began getting allergy shots to desensitize myself to allergy, since it seemed that allergies made my symptoms worse. This is now a fairly common treatment to try and control MM symptoms, or at least reduce them in MM patients who have allergies. (See Dr J Derebery's study on this treatment).
As many MM patients do, I went into remission for a year and a half. I DO NOT know if the allergy treatments helped cause my remission, but it seems likely they at least helped. There is no proof of that though.
In 2004 my symptoms starting coming back more frequently. In August of '04 and then again in December of '04/Jan '05 I had very severe attacks with accompanying rotational vertigo, and nystagmus of the eyes. My hearing continued to decline in my left ear and is currently at about a 50% loss.
After the attacks in Jan I became sicker on a baseline basis. In other words I am now at least a little dizzy every day. I am having light to moderate attacks more often. These attacks do not disable me too badly and do not have rotational vertigo, but they are very very uncomfortable (imagine spinning around 15 or 20 times and then trying to walk a 1/2 mile. That is how it feels for hours at a time) and they make walking difficult.
For the last year and a half I have not been on allergy shots because I moved to California and left my regular doctor in Portland, OR where I am from. As allergens have become frequent in the last two weeks I am having allergy symptoms - stuffy nose, sneezing, etc... - and my MM symptoms have kicked up so that I am having moderate attacks almost every day in afternoons.
So - What am doing to address all this?
TREATMENT
* First - I started with the typical stuff for MM patients: started a low sodium diet and began taking a diuretic (dyazide). I have also had to stop any use of caffeine and nicotine. (I REALLY miss caffeine... sigh...)
* Then I started allergy shots because I have moderate allergies. As I mentioned above I have ended those, but am now going to start them again in the next few months. I hope they have somewhat of the same mitigating effect that they did before!
* I take meclizine (also known as "antivert") and occasionally xanax as recommended by my doc's as a method to try and control the dizziness and attacks. Meclizine helps, but it has become less effective since January due to the ongoing damage in my inner ear.
* I am trying to lose weight and exercise more - who isn't right? :-) - but in my case I really feel these things will help me feel better on a daily basis. I feel the more I challenge the disease the more I will grow used to it and be better able to handle attacks.
* In the same vein I have started (just today in fact) vestibular rehabilitation therapy. This is a form of physical therapy that teaches people with constant dizziness exercises they can do to help them cope with the sensations and to help them challenge their systems so they can become more functional. See my next post for my first impressions of this.
* Finally I am currently taking SERC (betahistine hydrochloride). I take 16mg 3 times a day. It is theorized that taking or injecting histamine can help the inner ear deal with excess fluid. SERC has been approved for use in Europe and Canada for a number of years and is actually the first level of treatement along with a low sodium diet in those countries. SERC is not legally sold as a brand name drug in the US due to a squabble between the main manufacturer of the drug and the FDA over paperwork. Britain, France, Canada, etc.. have all found the drug to be safe - that is good enough for me. It IS legal in the US to buy SERC if a compounding pharamicist makes it for you from scratch. This is what I do, and my pharmacist has even talked with my insurance and arranged to have it covered! CLICK here for more SERC info.
* I am carefully considering the Meniett Device, but am leaning towards not trying it. I can explain why, but it would be in another post!
Since January I have seen my doctor (Dr Jennifer Derebery at the House Ear Clinic) and she has recommended I start to consider some more extreme options because it seems my MM is progressing quickly right now. Her first suggestion is shunt surgery. On May 9th I am having an ENG test (look up more info on this test at menieresinfo.com) to determine the full extent of the damage to my balance currently to help me determine if I am a candidate for this surgery. See a separate post on this surgery above.
The surgery decision will be quite momentous and I'm not sure how to feel about it, but we'll see.
That is a basic description, I'll edit and update this post if necessary.
First Post = Links!
Here is a post of something I posted elsewhere... but it has my favoirte Meniere's links on it.
I have Meniere's Disease in my left ear. This is a disorder that causes me to have attacks of dizziness, and to go gradually deaf in the affected hear. Right now I have about 5 - 10 severe attacks a year that cause me to be unable to walk for a few hours because I am so dizzy and often cause vomiting as well. They pass, and then I am vaguely back to normal, but I am now about 50% deaf in my bad ear. I have light to moderate attacks occasionally as well.
So here you go. My favorite general Meniere's sites where you can learn what the disease, current treatments etc is http://www.menieresinfo.com/ - Truly one of the best sites on the disease around. GREAT LINKS to every possible avenue of research and treatment currently being tried. They can lead you to research articles, books, and other resources as well. This is THE place to start if you have the disease.
http://www.menieres.org/ - Good site, good message board.
http://www.vestibular.org/ - Organized non profit for vestibular disorders. Good resource for ordering printed literature regarding Meniere's, including low sodium cookbooks.
http://www.lowsodiumcooking.com/ - Good recipes
http://www.meniett.com/ - More common but still controversial treatment for Meniere's. Go to menieresinfo.com above for links to research papers on this treatement.
http://www.houseearclinic.com/dereberyJ.htm - My doctor, plus a good link to look over the House Ear Clinic, which is a major research site for Meniere's.
And of course http://health.groups.yahoo.com/group/MenieresDG/ THE discussion group for Meniere's Disease :-)Feel free to contact me through posting a comment to ask any other questions you may have.
Thanks
Chad
I have Meniere's Disease in my left ear. This is a disorder that causes me to have attacks of dizziness, and to go gradually deaf in the affected hear. Right now I have about 5 - 10 severe attacks a year that cause me to be unable to walk for a few hours because I am so dizzy and often cause vomiting as well. They pass, and then I am vaguely back to normal, but I am now about 50% deaf in my bad ear. I have light to moderate attacks occasionally as well.
So here you go. My favorite general Meniere's sites where you can learn what the disease, current treatments etc is http://www.menieresinfo.com/ - Truly one of the best sites on the disease around. GREAT LINKS to every possible avenue of research and treatment currently being tried. They can lead you to research articles, books, and other resources as well. This is THE place to start if you have the disease.
http://www.menieres.org/ - Good site, good message board.
http://www.vestibular.org/ - Organized non profit for vestibular disorders. Good resource for ordering printed literature regarding Meniere's, including low sodium cookbooks.
http://www.lowsodiumcooking.com/ - Good recipes
http://www.meniett.com/ - More common but still controversial treatment for Meniere's. Go to menieresinfo.com above for links to research papers on this treatement.
http://www.houseearclinic.com/dereberyJ.htm - My doctor, plus a good link to look over the House Ear Clinic, which is a major research site for Meniere's.
And of course http://health.groups.yahoo.com/group/MenieresDG/ THE discussion group for Meniere's Disease :-)Feel free to contact me through posting a comment to ask any other questions you may have.
Thanks
Chad
Purpose of this blog!
I've been communicating some things with fellow Meniere's Disease sufferers and thought I'd add a blog that charted my journey with the disease and allowed me to post some resources for people to view.
This is by NO MEANS intended to be a comprehensive source of info about Meniere's Disease, but hopefully people looking for info on this topic will find some helpful resources here and be directed to other places to get help. Feel free to email me your questions about Menieres I will set up a new email address on gmail or yahoo and post it soon.
Thanks
Chad
This is by NO MEANS intended to be a comprehensive source of info about Meniere's Disease, but hopefully people looking for info on this topic will find some helpful resources here and be directed to other places to get help. Feel free to email me your questions about Menieres I will set up a new email address on gmail or yahoo and post it soon.
Thanks
Chad
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