I think I may have hemiplegic migraines?

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Hi guys. I have suffered with migrainesome now for over 16 years on and off they have been so bad they have left me with stroke like symptoms.

I have left side weakness. Left side stabbing headache. Face has drooped. Slurred speech and memory loss. The pain and paralysis will go but only for a matter of hours before returning

I am currently having the worst "hemiplegic migraine" I have had and am getting very little response from my GPS other than to keep on with the topirimate and zolmitriptan, none of which are having any affect at all. I initially went to A&European as I and ambulance crew assumed a stroke. CAT scan was clear.

I have other conditions that make me high risk of a stroke, so of course this worries me. I have a lot of stress right now which I am sure is not helping, but is out of my control.

The doc just keeps saying it is migraine... not even suggested that it could be hemiplegic migraine... dispite the fact that I keep passing out.

How have you guys overcome this and do you think I amight right in my self diagnosis?

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11 Replies

  • Posted

    Please forgive my grammar errors xxx suffering quite bad right now xxx
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    • Posted

      Hi I really feel for anyone going through these symptoms. I had this too bit it was actually ato immune disease causing my extreme migraine syndrome. I think you should be tested for that too. This is too extreme. I don't imagine it is simple migraine. Have you ever had blood tests which look at your inflammatory markers?

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    • Posted

      Hi, I am so sorry for your suffering. I feel your pain. ...yes, I believe that you are experiencing the same kind of pain i am currently suffering for years. (I am not a Dr.) But what you described is what I am feeling. ..can hardly stand the pain levels. Hard to see or even reply is difficult for me. Left sided weakness, drooping of side of face, slurred speach, words, & concentration, unable to start finish hardly anything. ..left hand cripples, bad limp, stabbing pain, eye pain...related to gasparesis, as my stomach does not digest food. Can't hardly finish this...been diagnosed, but left to die....family doesn't believe that I a. In so much pain daily.

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    • Posted

      You both make me so sad, and I have nothing to offer. My migraines of 30 years sound like a walk in the park compared to your symptoms. I do have them daily, they are combined with some symptoms of Menieres. We live a lonely, silent life in pain. I think my worst side effect is the severe depression. But I pray for both of you to get some better answers. As far as Topimax, it just causes brain fog, but you won't realize how much until you are off of it.

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    • Posted

      I have ME as well as polycythaemia Vera, if I ased them to test for auto immune too they would have a field day.

      Unfortunately due to my existing illnesses the GP is all too quick to put any new symptoms under the umbrella of those and brush it under the carpet.

      This is not in the slightest bit helpful to me and leaves me suffering way longer than needed. Thank you for your reply xx

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    • Posted

      I really feel for you Elizabeth. What you haveat said is all I suffer with. Do you have a diagnosis of hemiplegic migraine? If so have uou found any releaf?
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    • Posted

      Thank you for your reply Betty.

      And thank you for your prayers. Any suffering is still too much my dear.

      And 30 years is a long time. It must be so tiring for you! I hope and pray you too find a fix to your long standing problem.

      Much love xx

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    • Posted

      I feel for all who suffer from all physical & emotional pains, especially those invisible or not believed by those treating us, & sometimes family & friends.

      To answer your question of how I got diagnosed was from repeated visit to ER & either getting diagnosed with Tia, which Neurologist confirmed that it was not, but refer it at as the mist hardest of all to treat. Have tried depecot? (Sorry not a good speller right now. ) ~ was on 2000 MG for 2 years, then to topiramate (topomax ) gabapentine, & a few others with crazy side effects. After having major surgery recently, have had bone spurs that shaved spinal cord, c3 through c7 fusion. I was hoping to stop having the symptoms of ms or fibromialgia. Wow, such a complainer. ..I am sorry, but feel I am with some people who can understand, & that makes me very sad to know how long some of you have suffered. I am so very sorry. I pray so much, since it sometimes is the only thing I can do. I will pray for all of you.

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    • Posted

      hi, I understand there is always a challenge for people like us. I too had a struggle on my hands to be diagnosed. I am very fortunate to have one very very good gp who is totally approachable and always willing to discuss and refer me on if need be. I am now at stage where I would change gp rather than have to worry about asking for referrals. They really are obliged to refer you if you have concerns and must give a very good reason in writing for refusing. 

      My sister had a thyroid complaint for years. Her GP was refusing to treat her for it. I phoned her doc and requested they refer her to a rheumatologist for joint pain. The rheum forced them to treat her thyroid issue. It is dreadful what some gp's get away with but you must pull them on it. Go to the practice manager if you need a referral and aren't being given it. I just don't take stonewalling now. 

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  • Posted

    Hi Agentdove. I believe 100% you are suffering from hemiplegic migraines. I have suffered from migraines for 30+ years. On 4/5/2010 I woke up with a bi#ch of a headache. I still have it. Early on the pain would range from 5 on a good day to 10 on a bad one (on the 1  - 10 pain scale). As time has passed a good day is only an 8. Needless to say, I have tried every medication and procedure, from nerve blocks to epidurals to tens units to Botox and finally day before yesterday I got my diaths pierced. The Botox helped for a time. Anything that has helped a little, only helped for a few months. Many meds I've tried had horrible side effects. It's too soon to tell if the diath piercing is going to help. Nothing ventured nothing gained. Only once in the 6 years that the headache has been ever present did it manifest to a hemiplegic "stroke" headache. I was 55 years old and it scared me and everyone that was with me nearly to death. My joints froze. My elbows were bent up and I couldn't straighten my arms. My hands were clawed and felt like they were burning. My speech was so slurred you could barely understand me and I had difficulty walking. I was over 60 miles away from any medical facility and it passed in slightly over an hour. When I saw my GP a week later he had me tested by a cardiologist. They found no signs of a stroke. I was not convinced. I know something happened. I explained everything to my headache specialist the next time I saw him. He told me it was a hemiplegic migraine. He told me they generally last 30 - 60 minutes but may go on anywhere from days to weeks to months. Do you have headache specialists where you live? Or a neurologist that specializes in headaches or an  anesthesiologist? They sometimes specialize in pain management and headache pain. I suggest you do what you can to see another doctor. I only suffered from a hemiplegic migraine once and I will never forget it. I would rather suffer with my daily migraines than another one of yours. I feel so badly for you. I will remember you in my prayers. Good luck and God bless.

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  • Posted

    I forgot to mention, I agree with Margaret. Please if you consider trying any "natural" remedies, be very, very careful. I have done a great deal of research on them and they have the potential to be dangerous (effecting your blood pressure etc.). Be sure and check with your doctor before you try anything natural or off-label. I would hate for you to complicate matters.

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