Hemiplegic and other conditions linked?

Hi, I have suffered hemiplegic migraines for 11 years following a minor head injury. They have been getting worse, as I have been passing out without warning and slumping down on a table, with usual sickness, left sided going numb and jaw so tight cant talk properly, they take about three days to pass, sometimes with severe pain in left eye and back of head. I have recently been given pregabalin 150mg morning and night and so help it helps reduce frequency and intensity. Does anyone else have success with this treatment?, the neurologist said then next one to try would be topiramate. I also wonder if anyone else has other conditions linked to hemiplegic attacks-endometriosis, asthma? They all seem to get worse together at the same time for me. If anyone has found something that has helped with hemiplegic attacks it would be great to hear from you.

4 Replies

  • Hi there,

    Yes! I have endometriosis as well. I have had three hemiplegic migraines following coming off Prostap injections, which were the only thing to stop not only the endometriosis pain but a world of other weird symptoms which it seems were probably all migraine-related. I was told for years I had assorted mental health problems but it's getting more obvious that wasn't the case.

    I have roughly the same symptoms as you and ended up staying overnight in a stroke ward six months ago. No luck in finding a treatment so far but it's only really just been taken seriously. I'm going to see a specialist in Liverpool at some point. While I wouldn't wish this on anybody I'm very glad to hear someone else with the same experience - I feel pretty isolated at the moment.

  • Hi!

    I know what you mean, it is pretty isolating and good to know someone else is trying to manage the same conditions even though they are horrendous. After 100's of a and e admissions over 10 years due to hemiplegic attacks I feel I know more about what is happening to me than most a and e doctors! My symptoms have varied in intensity and changed each time my body gets used to new neuro meds. Dont let any doctors give you triptan treatment i.e almogran as they make hemiplegic attacks worse. Ive been told the pill is also a no no..which is rubbish as endo consultants also want to go down that route. I do feel like a guinea pig most of the time, but its my life consultants are messing with. Interesting you mention mental health issues as its something thats affected me on and off for years like anxiety and depression, I certainly dont think endo and hemi chronic conditions help.

    With the hemiplegic migraines, Im trying to learn that once they start there is nothing I can do but rest for about three days, it interfears with work, socialising etc but its out of my control and when I feel really ill I remind myself that it will pass.

    On an endo note..Have the prostap injections helped ? Do you know if they have any affect on fertility?

    I dont know about you but it would be great to find a consultant who specialises in Endo and Hemiplegic migraine-if they exist?!

  • Hi just to rule it out, considering that you have autoimmune things going on you need to look at Hughes Syndrome, the blood tests are cheap, and it can mimic the migraines you have and some people can have both. MaryF x

  • Oh my god, I can't believe their are other people that suffer with this, I have suffered with Migraine since I was about 13-15 then when I was 17 I started blacking out when migraine was bad and got told it's a faint from the pain. I was far from convinced! have had bouts of crippling migraine that seem to make my spine hurt as well and weakness down my left side. Have been to the doctor as I started twitching when I was blacking out. was told it was all in my head, it was happening at work and they were calling ambulances, eventually my boss suspended me, and came with me to the doctors to get some answers, he sent me for epilepsy tests and said fairly sure it's not that. haven't had any attacks in 3 months, I was beginning to feel as if it had finally stopped but then had one on Wednesday that ended up in A and E with what they thought was a stroke as I couldn't speak properly, had weakness down one side and was very confused. I have been feeling the lowest of the low. you get the feeling that you have a message on your forehead that says `time waster, don't bother with her' `it's all in her head'. So it's very reassuring to find others that have the same problems. Now all I have to do is convince my doctor. any advice on how to get him to take me serious would be good. thanks

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