EDS III & Hemiplegic migraine

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guernseygirl
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 9/19/2012 3:19 AM (GMT -7)   
I have Ehlers -Danlos syndrome and Fibromyagia and after being diagnosed with having TIA 's for 6 yrs I have just had a new diagnosis of Hemiplegic migraine. I have had three over the last 5 weeks and my right side has remained paralysed, the headaches come & go. Anyone else have this prolonged after effect?
Also I need to find a specialist in London or Southampton - as I will be flying over from the Channel islands for a consultation. Please can anyone help... Life was bad enough before to be honest, and this is the last straw...

francherry
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/10/2013 1:39 PM (GMT -7)   
I also have EDS type 3 and permanent migraine on the right hand side. How can i contact you?

guernseygirl
New Member


Date Joined Sep 2012
Total Posts : 2
   Posted 4/11/2013 8:22 AM (GMT -7)   
My email is Anenome@iname.com. Be glad to hear from you...

Hope1970
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Date Joined Jul 2013
Total Posts : 1
   Posted 7/1/2013 10:47 AM (GMT -7)   
Gentle hugs to all the others out there who are suffering because of EDS.

I have not yet been officially diagnosed with Ehlers Danlos type 3 because i have only just started looking for answers for my pain this year; but I score 6 out of 9 on the Beighton test, plus I can do the backwards namaste and I can lock up and bend all the tips of my fingers. I'm in constant pain, hands, hips, feet, shoulders, neck and back, and I always feel like I'm about to fall apart. the simplest move and things pop out of position and I'm in agony. I Also have a family history of aneurysms. I have hemiplegic migraines as well. i was 9 years old the first time I had one. I also have hydradenittis Suppurativa (boil like infections) under my arms. I hate feeling sick all the time, and having my life stolen from me. My kids all have varying degrees of hypermobility and migraine headaches, often with vomiting. I want to get them help early and maybe prevent some of what I've gone through. However, I live in British Columbia, Canada, and we in general seem to be about 20 years behind the scenes when it comes to medical stuff, and there is not a lot of awareness here, so the process to get help is very slow. If any of you folks out there are praying types I would welcome your prayers, and send mine your way. God Bless.

VivianWillis
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/28/2013 3:41 PM (GMT -7)   
Guernsey girl and francherry my 19-year-old son has hypermobility EDS and hemiplegic migraines, the first one happened yesterday with complete paralysis on the right side. I am not finding any sites that have good suggestions for treatment options or what the odds are that the temporary paralysis can become permanent over time. I have read at least 15 accounts of EDSrs having permanent issues over time.

Would you both be willing to contact me?
Thanks!
Vivianmomgeo@yahoo.com
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