Hemiplegic Migraines

Does anyone have any suggestions?
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TaraLyn
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/12/2011 12:11 PM (GMT -6)   
Hello I have been suffering with hemiplegic migraines for more than 11 yrs, I became disable due to my condition. I am looking for alternative treatments. I have been on everything and they have tried everything. When I get one of my episodes I can be in the hospital for more than a month and up to three months. I'm 38 my kids are grown and I'm tired of being labeled as drug seeking or pretending to be paralyze on one side. I'm frustrated and can't take the pain anymore. My head feels as though it's going to blow and my eye on the left side feels as it's about to pop. I'm tired of suffering and trying to explain my condition to doctors who don't understand. I need help really badly, tired of being in pain and restricted to a bed 24/7 since I'm paralyze on the right side.


Thx

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/12/2011 1:44 PM (GMT -6)   
This may or may not be a stupid question, but have you been to a headache/migraine specialist (i.e. headache center)?

TaraLyn
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/12/2011 3:27 PM (GMT -6)   
I have been to 3 migraine centers, Miami, Tampa and shands in Jacksonville

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/13/2011 12:37 AM (GMT -6)   
It may be time to bring in the big dogs so to speak. Not all migraine centers are created equal.

I would contact:

Diamond Headache Clinic (Chicago)
Thomas Jefferson Headache Clinic (Philadelphia)
New England Headache Center (Connecticut)

maybe

MHNI (michigan)

as well.

These would be your best shots! You can also write to and ask these centers, If they had hemiplegic migraines specifically, what one physician in the country would they go to? It's always worth a shot!

Best of luck!

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/13/2011 12:56 AM (GMT -6)   
I also vaguely recall a new medication that may be coming onto the market within a year or two (you may qualify to get into the drug trial?).

It's an abortive (I know... not a preventative). The big thing is that it does not have the same contraindications that triptans do.

CGRP receptor antagonists. "According to Goadsby, the new drugs won’t carry triptans’ increased risk of heart attack (SF chronicle)."

TaraLyn
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/13/2011 8:07 AM (GMT -6)   
Thank you for your help, I have spoken to those migraine centers and they don't accept Medicare and require a $25,000 deposit. My old neurologist suggested doctor Silverstein. The Tampa migraine center is associated with MHNI. I feel as if I have no choice but to live with it and accept the fact that I will spend atleast 2-3 months a year in a hospital. I'm just tired if fighting this sickness. Thank you

EvilFluorescents
Regular Member


Date Joined Jan 2011
Total Posts : 224
   Posted 1/13/2011 10:29 AM (GMT -6)   
Well I'm sorry I wasn't able to help.

They have started a new headache center on the west coast (if you are able to travel that distance). While the center isn't as established, they have brought in some very talented, experienced and established physicians. It is at UCSF.

As it is located at a state school, maybe they take medicare?

Best of luck!

TaraLyn
New Member


Date Joined Jan 2011
Total Posts : 6
   Posted 1/13/2011 10:37 AM (GMT -6)   
Thank you it's worth a try
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