Comments for Familial hemiplegic migraines

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Familial hemiplegic migraines

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Familial Hemiplegic Migraine
by: shashank

Here is a link to more information about the genetics of Familial Hemiplegic Migraine that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: Genetics of Familial Hemiplegic Migraine. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

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Hi,
Thanks so much! I have post the link here and will add it to my resources page..

Mary Kay

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Thank you
by: Vicki

Thank you so much for the fast and helpful response.

I did have a tilt table test when I was 29 and the official diagnosis was Neurally Mediated Hypotensive Orthostatic Syncope. I am on a high salt diet and take Proamatine for this but it causes me to stay awake for 24 hours after just 1 dose so I take it very sparingly.

I do ride my exercise bike 5 times a week and eat regular meals but sleep is the hard one. I have had insomnia since about 6 months before the migraines started in 1992. I have tried Elavil, Trazadone, Ambien, Roserem and Xanax in the past and Xanax is the only one that did much good. These days, I consider it a good night if I get 4 hours of sleep a night.

After reading about herbs and vitamins on your web site, I started thinking about the time period when my migraines stopped. During that time I was undergoing fertility treatments or pregnant and taking prenatal vitamins and extra folic acid and I wonder if that had anything to do with the pain stopping? I am going to talk to my Dr. at my next appointment to make sure there are no interference issues with my daily meds and then start the vitamins you recommended.

Lastly, can you give me an idea of what to expect if I traveled to the Dent Clinic? Based on what you know of my history, should I expect to need to be in town more than 1 day, are there tests I could have done here to expedite things, how frequently will I need to come back for follow-ups, will I be seeing you or someone else? I know you will be guessing on some of this and that is ok.

Thank you so much for all of the information and hope you provide.

Answer:

You are quite welcome Vicki. Give the vitamins a try..they really do not interact with anything you are on. Main side effect of magnesium might be loose stools and if blatent diarrhea then you can't take it.

As far as coming to Dent, make sure your insurance will cover you first! The best day to see us is a Tuesday or Wednesday as that is when my doctor, Dr. Mechtler is seeing patients all day. He likes to see all new patients.

If you come to see us, bring any MRI films that are less than one year old, brain and/or C-spine. We do not need x-rays. You can call the main number to make an appointment with me and you will see the doctor too. Plan to spend an hour or so the first time.

Bring your records too.

I really would consider starting closer to home, but of course it is up to you!
Mary Kay

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Submitted by: Vicki

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Thank you so much for the fast and helpful response. I did have a tilt table test when I was 29 and the official diagnosis was Neurally Mediated Hypotensive Orthostatic Syncope. I am on a high salt diet and take Proamatine for this but it causes me to stay awake for 24 hours after just 1 dose so I take it very sparingly. I do ride my exercise bike 5 times a week and eat regular meals but sleep is the hard one. I have had insomnia since about 6 months before the migraines started in 1992. I have tried Elavil, Trazadone, Ambien, Roserem and Xanax in the past and Xanax is the only one that did much good. These days, I consider it a good night if I get 4 hours of sleep a night. After reading about herbs and vitamins on your web site, I started thinking about the time period when my migraines stopped. During that time I was undergoing fertility treatments or pregnant and taking prenatal vitamins and extra folic acid and I wonder if that had anything to do with the pain stopping? I am going to talk to my Dr. at my next appointment to make sure there are no interference issues with my daily meds and then start the vitamins you recommended. Lastly, can you give me an idea of what to expect if I traveled to the Dent Clinic? Based on what you know of my history, should I expect to need to be in town more than 1 day, are there tests I could have done here to expedite things, how frequently will I need to come back for follow-ups, will I be seeing you or someone else? I know you will be guessing on some of this and that is ok. Thank you so much for all of the information and hope you provide. <b>Answer:</b> You are quite welcome Vicki. Give the vitamins a try..they really do not interact with anything you are on. Main side effect of magnesium might be loose stools and if blatent diarrhea then you can't take it. As far as coming to Dent, make sure your insurance will cover you first! The best day to see us is a Tuesday or Wednesday as that is when my doctor, Dr. Mechtler is seeing patients all day. He likes to see all new patients. If you come to see us, bring any MRI films that are less than one year old, brain and/or C-spine. We do not need x-rays. You can call the main number to make an appointment with me and you will see the doctor too. Plan to spend an hour or so the first time. Bring your records too. I really would consider starting closer to home, but of course it is up to you! Mary Kay

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