I have constant hemiplegic migraines according to my neurologist. I have lost some mobility in my left leg, and have numbness in my face and foot most of the time. About twice a month I get "traveling numbness" that leaves me unable to speak correctly. I loose my vision almost daily, and have focal seizures about 2 times per month. And we not to mention the headaches themselves. According to my doctor these sypmtoms are extreme, but related to the hemiplegic migraines. There isn't alot of information out there on these types of migraines so I just wondered if someone else experiences the same symptoms. I have suffered from headaches since I was a kid, and I am now 31. The seizures didn't start till 5 years ago though, and it is getting progressively worse. My MRI's have been normal, as well as my EEG's, and the spinal tap results got lost and i refuse to have another one. I have refused medication until a doctor gave me a definte diagnosis, and now that I have one I just wonder if there is hope???
My husband has also been diagnoses with hemiplegic migraines. We haven't found anything that we can pinpoint that triggers these episodes but there are times when he can't stand or walk because the hemiparesis on his right side is so severe. Other times it may only affect his right eye and his speech a bit. Our biggest problem is that whether he is on the meds to supposedly prevent the migraines or not he still has them. However, that may not be the case with you. He is actually taking a high dose of Depakote (2 500mg tabs twice a day) AND he is taking Topomax. (2 25mg tabs twice a day) He has also had some seizure activity on occasion with them. Sometimes they come on as "attacks". He can be completely fine and then his entire body will stiffen up and the hemiparesis follows. When this happens he doesn't remember most of the several hours before or during it. I am not satisfied with the diagnosis because of the fact that the family practice says it is this but the neurologist says he doesn't think so. ALthough, the neurologist cannot say what it might be. We have had NUMEROUS MRI's and thankfully there has been no damage from these "strokes". I hope you get some answers, and if you haven't already, talk with your doctor about the Depakote and/or Topomax. It may be that we just have to adjust dosage every so often to completely prevent, we just haven't found that magic dosage yet.
My husband has hemiplegic migraines too...he just started out with bad headaches and what we were told was todd's paralysis...now he has a constant headache with seizures and full on paralysis we have taken nurmerous different meds depakote, topamax, amitripline...now we are on verapamil, gabapentin, pednisone, strong pain meds, and was given a shot of novacane in the back of the base of his skull...nothing helps and its slowly getting worse we go from doctor to doctor eeg;s and mri's always come back normal....we even had a doctor at an e.r. room tell us he was faking it...this illness is crazy i just wish a doctor out there can figure it out bc watching my husband suffer is awful :/
Hi there I am 28 yrs old female I started with a stroke like episode 5 years ago after a head injury, Now every month I have a seizure with bad after migraine and right side weakness including facial... I am on no medication apart from Amitrypaline to help me sleep, and the only dx I have had from several dr's is we dont know or non epileptic seizures due to migraine?? it makes no sense at all I would have been better off if they said hemaplegic migraines... now I feel like im going mad... these episodes to me have no known cause except I have been more drained lately than normal. Im stuck Im not even on any migraine medication nor have I had a EEG, I don't know where else to turn to these episodes or mentally and physically exhausting.. there is just no help or support its ridiculous.
My son, 12, is experiencing very similar symptoms to your husband. Appalling one sided headache. Visual disturbance. Numbness. Total body pain and abdominal agony. Nausea, diarrhoea, aphasia, breathing difficulties, voice loss, confusion and black outs. We have a family history of migraine, and I believe mine and his are hemiplegic as one side goes more numb and weak than the other. (I have onesided numbness with my intermittent migraines too) He also has a heart condition, and is now severely underweight. The liquid nutrition he is on makes him ill. I'm beside myself. He's in despair. School is out of the question. The situation has been worsening for the past 2 years, and this current migraine has been continual for 2 months. He's on a restricted diet, no egg, dairy or soya, but this seems to have made him more food sensitive, not less. Before he was eating 4000 calories a day, losing weight and having hypoglaecimia. Now he can only eat soup, meat and vegetables. A&E, even when sent by the GP, is a revolving door. One paediatrician prescribed triptans, which made it worse. Most of the doctors, he is under several departments at Great Ormond Street, are pushing him towards mental health services, when ALL of his depression is down to the fact that his life has been shut down by this catastrophic illness. Please.... If anyone has a regime to arrest this horror....
Familia hemiplegic migraines can be diagnosed with a simple blood test. Have you are you son been tested? I know this will not help your migraines but at least you would have a diagnoses. I am 37 and suffered from familia hemiplegic migraines since I was 8. I have tried numerous medicines without any relief and been to many of neurologist and migraine specialist. I believe each migraine sufferer is different and trust your personal judgement. For me, I am sick of all preventative drugs and their side effects. I have learned for me it is easier for me to deal with my migraines as pain management and not preventative. Recent studies show that COQ 10 and riboflavin help hemiplegic migraine sufferers. I have tried that also and did not see results. Feel free to email me and I will share my experience and medications that I have tried.
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