Needing support :( Hemiplegic Migraines

Hey everyone, been a while again since i have posted. Things are getting unbearable and i dont know how much longer i can go on. I have recently been told by my GP there is nothing more that can be done to help me. My migraines (Hemiplegic migraines) are really severe and ive had to have some time off work again to settle them down as i cannot use the left side of my body once it starts. I am awaiting to have some Botox treatment in my head sometime in June, has anyone else had this and has it worked for you? Would be great to learn some information about it. This illness is really taking its toll on my life and I'm only 22. Has anyone been cured from this awful disease? X

9 Replies

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  • Awe sticks 😣 I'm so sorry your suffering so badly. Is nothing helping you get control?

  • Unfortunately not Cally01 :( the only thing giving me some sort of relief is sleep but i can exactly sleep all day! Xx

  • Hi I take Indometacin 3 times a day and topiramate 25mg twice a day and gave not had a migraine since February whichbiscwonderful nivtrips in ambulances thinking I have had a stroke as my hemipalegic was severe J have just got results if MRI scans as I have had 2 in the last 3 weeks all checking my brain and they are all clear so I have a great neurologist and I am also supported by my GP now going to try to reduce the topiramate to once a day over the next month.

  • Hi, thank you for your message. Our situations sound very similar! I have tried topiramate and it didn't touch my migraines so i came off of it. I'm glad you are feeling better though!

  • Hi. You're doctor doesn't really sound like he knows what to do. Of course there's more that can be done, change Doctors. I understand the feeling that you can't go as I've been there, keep trying anything you can, at your age there may be lots of new options and new things are being discovered constantly.

  • Thank you, that may be somthing I have to do eventually. Trying to keep my hopes up.

  • Hi I had Botox done privately and worked really well for me .only lasts about 7 weeks though so just had another lot and then going for surgery

  • What surgery is it and what does it do?

  • Hi ,the surgery as far as I'm aware removes the muscle on your forehead that allows you to frown as this presses down on a nerve causing migraine.the other part is in the back of your neck where they clear space around the nerve so no longer gets pressed so stops pain.does not work for everyone and you do need to have Botox trial first to see if suitable for op .botox worked for myself but quite expensive to keep having and only lasts 6 to 8 weeks .hope this helps.If you go on The migraine surgery clinic ,Harley street ,website has some more info

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