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.
Thursday, April 21, 2005
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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