Hemipeligic migraines

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Mrsderby
New Member


Date Joined Oct 2012
Total Posts : 4
   Posted 10/3/2012 11:45 AM (GMT -6)   
I was diagnosed with complex hemepeligic migraines in January at age 44. Have had "classic" migraines for 25 years.  Tried Elevil, Topomax, Neurontin and depakote.  Severe complicartions to all but depakote.  That worked well to prevent but I had to stop due to enormous weight gain 2 weeks ago.  Headaches are back.  Severe pain right side of head, loss of use of left side of body.  Weird thing is sometimes it is not numbness/weakness on my side but instead it is muscle contractions to the point that my arm and leg contort and it is the most severe crushing pain imaginable.  I have researched this condition for 9 months now and have not seen that mentioned anywhere.  Have any of you had this?  I am afraid to mention it to my neurologist for fear he will think me a crackpot.  My migraines last for days.  I have been to the ER about 9 times this year after suffereing for 3 days or more looking for something to break the cycle of pain.  Sometimes I am admitted, sometimes they run unnecesary tests (because they have been done repeatedly this year) and sometimes they give me one dose of morphine and 2 doses of daladid.  That always knocks out the pain and I am fine.  Problem is the ER doctors think they know me better than I know myself and will not listen when I tell them what is wrong and what needs to be done to fix it.  Seeing neuro today and hopefully he will give me some way to stay out of the hospital.
 
Does anyone else experience the pain I described???

the matrix 77
New Member


Date Joined Oct 2012
Total Posts : 1
   Posted 10/5/2012 4:16 PM (GMT -6)   
Hi Mrsderby. I know how you feel pretaining to your headaches. my wife gets the same symtoms. she has been suffering these severe hemiplegic migrains since childhood. She has been taking Topamax for years and finally found the right dosage a couple of years ago even though she still gets them. It"s hard to see her in so much pain and what usualy causes these is the weather or stress Please provide us with any tips or tricks that you have
 
thanks smurf
 
Matrix77

Mrsderby
New Member


Date Joined Oct 2012
Total Posts : 4
   Posted 10/5/2012 6:01 PM (GMT -6)   
!!! Saw my neurologist Tuesday. There is a brand new migraine medicine out. Unfortunatly it does not stop the neurological symptoms but, after having my migraine for 6 days, trying excedrin, fioricet, and everything else I could get my hands on, one dose stopped the pain in my head in 10 minutes!!! It is called Cambria. I was llucky that my insurance covers it but you can go to their website and download a coupon as well. To prevent the migraines he put me on both Depakote and Verapamil. Will have to wait and see if that works. As for the neurological symptoms (paralysis and such) the Dr said there is nothing to stop that. But without the pain I can handle that. Just have to use my walker. Good luck to your wife.

luckydog1977
Regular Member


Date Joined Aug 2012
Total Posts : 121
   Posted 10/5/2012 11:02 PM (GMT -6)   
I was diagnosed in my early 30's after over 10 years of migraines. I have read and been told by 2 neuros that they have isolated the genes responsible and that the best prevention is a calcium channel blocker, verapamil is preferred and it changed my life. I still get a few regular migraines and hemiplegic but the verapamil has really turned things around. Good luck to you! K
GAD, panic disorder, bipolar1, GERD migraine with aura, hemiplegic migraine, prolonged q t interval, tachycardia, arrhythmia, fibromyalgia, polycystic ovarian disease, PTSD

Klonopin, Cymbalta, Abilify, Eskalith,Lyrica, Flexeril, TalwinNX, Prilosec, Verapamil, Toprol XL, Synthroid, Lipitor, Phenergan, Melatonin, Multivitamin, B12, b complex, vitamin c, magnesium, vitamin d (50,000iu's prescribed)

Mrsderby
New Member


Date Joined Oct 2012
Total Posts : 4
   Posted 10/6/2012 8:24 PM (GMT -6)   
Luckydog, You sound like a carbon copy of me. When I asked my neuro about the verapamil he tried to talk me out of it and said it didn't really work but I insisted because of reviews from people like you. Have been on it for 2 days now. No change yet but I still have hope. As I stated in my last post though, you should really see about Cambria for the migraines. It is a powder that you mix with water so it works really fast. Migraine pain gone in 10 minutes for me. I love it. The great thing about it rather than meds like Imitrex is you can take it at any point during the migraine. You don't have to catch it at the beginning.

Good luck to you.

borninaruba
New Member


Date Joined Oct 2012
Total Posts : 2
   Posted 10/14/2012 12:01 AM (GMT -6)   
My partner suffers from hemiplegic migraines. He had the chromosome test and has the rarest form. He has had it for 7 consecutive weeks, suffered 4 seizures, three in cars, one at home. He has had every test, sleep, EEG MRI. His first was Dec. 2012 and he was put on Keprah, the next incident was after a 2 hr car ride, lasted 2 . days, we went to the gym, played raquetball, next day headache and paralysis. He is controlling paralysis with his mind, accepting the migraines but refusing the paralysis, only his left eye moves and rolls back. Been in so many hospitals searching for a solution, they say nothing wrong with him. Morphine has no effect. He suffers also now from the pain in the back of his head.Currently with latest seizure all he sees are blobs of grey. MMJ brings migraines down one or two points. He gets confused. We are supposed to travel to New Zealand from California in three days,hoping for an overnite solution. He was told Topomax interacts poorly with Cumidin which he is on. We eat no preservatives or aged products. Doing everything , every site recommends but no success. Thank you to all who have shared. May the Universe be kind and release you of this heavy burden.
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