Hemiplegic migraines

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New Member

Date Joined Jun 2013
Total Posts : 1
   Posted 6/4/2013 2:56 AM (GMT -6)   
Hi, new to this site. Wanting to speak to others who have Hemiplegic migraines. I have had mine for 6 years this month. The first time I had it I was sent to hospital for a suspected bleed to the brain. After 3 days of tests, one night of my parents being told I wouldn't make it through the night and plenty of scans I found out that I was suffering from migraines. This lasted non stop for 7 months! It was pure hell! I have recently read about Hemiplegic migraines and am so happy that there is a name for it. I struggle with losing feeling in my right side. Feel hopeless. I do have an amazing partner who helps out but I'm too independent. Speaking to someone who is going through the same thing would be great :-)

[added a subject so you get more responses]

Post Edited By Moderator (notsosicklygirl) : 6/4/2013 8:18:47 AM (GMT-6)

New Member

Date Joined Aug 2011
Total Posts : 7
   Posted 9/11/2013 1:00 PM (GMT -6)   
My doctors had never heard of HM. They ended up saying I was crazy. Three years waisted on these doctors. They said they wouldn't see me until I completed physical therapy and a psychiatrist. They thought I needed the PT because I had let exercise go and my muscle weakness was me just not moving enough. The Nero said that it was all in my head...as in crazy.

I have a new GP and oncologist. I meet with my nero doc next month.
My doctors are really worried. My GP says he feels like calling an ambulance every time I see him. I have episodes of all the muscles in my body go into spasm. It will last for 1 minute and may be longer. When the episode is over my entire body goes limp and I can't speak. Just last week I tried to keep my appointment but this episode became the issue. I had four doctors and at least four nurses. The doctors kept telling the nurses to do all this stuff. Thank God by the time they got the defibulater out my onocologist arrived. He was explaining to the doctors what it was. Yeah...you think having an Ed would be enough. These HM headaches began the week following my last radiation dose.

I found the name of it by google. I just put all my symptoms in the search and found a couple sites that explained what I had. Wow...I thought it was a huge gift just to know what it was.

I woke up today...must of bad a bad one in my sleep.both legs and my arms are affected. I have these migraines everyday. That is 3.5 years of hell. At times my Mom would take me to her place when I got really bad...but 95% of the time I've been alone. I moved to where a couple of my kids live.

I am on Social Security disability. My doctors are trying to help me. So...there is hope. I know there is no cure for my migraines as well as my cancer. But I'm working on quality of life. My children are all grown and finished college. They are all working at jobs they love. 5 are girls and only one son. Hahaha...he told me he was having two kids and no girls. He has two beautiful daughters and loves them dearly.i have 11 grandkids. My eldest who is 15 and now has HM. I feel so sad for her. She is far too young...she has great doctors.

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