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No one can figure out what’s WRONG with me…

Hi guys! My name is Angie and I am 20 years old. I live in a small town called Graysville and I have been too many doctors for my Epilepsy disorder. The Neurologist I see now calls them “spells” although I have seen and taken care of my sister through her seizures. She has Partial Seizures with some paralization on her right side. My niece Sonniah also has Head Drop seizures. Anyway…on to my epilepsy or “spells”.

When I have an episode I almost ALWAYS have a SEVERE migraine before it starts. Its so bad that it pounds and my head moves with the pounding. I know its a seizure migraine because the migraine is behind my eyes and so I lay down on my side like my mom taught me. I lay there and try to relax and hope my migraine goes away. When it procedes to worsen i prepare for my seizure to start. It starts out with either my left or right arm twitching and my eyes rolling back. My legs usually go stiff and sometimes I am or I am not concious or aware of what is going on. I can’t talk during the seizure but I can hear my mom or boyfriend asking if i can hear them and by communicating I can squeeze their hand to let them know I’m aware that they are there. When the seizure goes away I sometimes cry because of my legs going stiff it gets painful. I think the pain is because of the arthritis in my knees but i’m not sure.

If anyone has any idea of what kind of seizures these could be or if you have any idea of what could help me PLEASE let me know. I am begging for help. I can’t drive, work, or anything. I really need to get my life back together. I mean I am only 20 years old and I have my whole life ahead of me.



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  • Lisa Cooper Ray
    7 years ago

    Angie, I completely understand. It was 2005 when I had my first seizure with a severe migraine. Was so bad they thought I had had a stroke, couldn’t walk for 2 weeks…then could only walk with a walker(like old people use). I was 35 at the time. I did eventually regain all ability to walk and function again…took several months though. Since then I still have seizures with my severe migraines. Did lots of tests, EEGs included, the seizures are not epilepsy. My neurologist calls them “spells” as well. I am on Tegretol 200mg, 3 Times a day. So far that has helped reduce the frequency of the seizures…still have the severe migraines though. Last seizure was almost 6 months ago now. I always feel like Ive been in a car accident the day after the seizures, everything hurts…ache all over. I’m guessing from the severe muscle spasms during the seizure. So glad to hear this happens to other people…was afraid it was only me. Ive never met anyone in person who has similar experiences. Glad I can come here and know I’m not alone! – Lisa

  • Heather Macon Lawless
    7 years ago

    Angie, so very sorry this has happened to you at such a young age. I have just started my journey with migraines and migraine seizures since early 2010. Also, I am on a daily regiment of anti seizure meds and anti migraine meds. You are not alone! I have been to so many “Specialist” and had countless test done. My seizures are non-epileptic in nature, but I loose all consciousness during a spell. Legs stiffen, cramps form, back arches, arms shake violently, head shakes, and jaw locks. Seizure triggers are flashing lights, persistent base beat and of course severe migraine to the inside corner of the right eye. No one knows why or what to do. I can’t work, drive, and most days function. It is very hard for others (family and friends) to understand. But the family does. Keep looking for the right specialist. I know he is out there just waiting to be found. I hope my long trips to the Mayo Clinic in Jacksonville, FL are worth it. I have found some really good Neurologists there. Best wishes

  • Heather Macon Lawless
    7 years ago

    Liz Murdock thank you there are a lot of people with this disease. We all appreciate your prayers.

  • Liz Murdock
    7 years ago

    I have missed seeing you and heard you weren’t doing well, but I didn’t know it was this!!! Will pray for you.

  • Patti Faler
    7 years ago

    Hello Angie, sorry to hear that u are having alot of problems. Have you had an eeg done yet? that might tell me of what’s going on. I do have alot of migraines. And my huband has epilepsy.
    How many siezures do u have with the migraine? And, I think you should talk with a specialist. Keep me posted. Hope I helped. Patti

  • Julie Anne Crowley
    7 years ago

    Thank you for your article. I experience seizure migraines as well. I have suffered with them for almost 8 years now. I am 29 and know how stressful, overwhelming and depressing it can be to struggle with such a debilitating disorder…especially when we are so young. I recently went through a rough patch and was out of work for a month. My neurologist actually gives me Botox injections in my head, forehead, neck and shoulders as a migraine preventative. They work, however it is costly. Insurance should cover some amount. I also get Trigger Point nerve blockers. I am on an anti-migraine anti-seizure medication as well. Just know you are not alone in your battle. I wish you well. Peace, Julie.

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