Meds for aura stasis

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hi guys. I've had constant aura since Christmas. It's extremely severe and debilitating. The first 2 times I saw the neuro he didn't know what was wrong with me its that bad. I've had all the tests and its definitely that. I've been on topiramate 50 mgs twice day for 12 weeks now and due to increase to 75 mgs next week. The topiramate nearly killed me but things levelled off abit over the last few weeks and I do feel abit better now. I can at least drive short distances and play with my children a little bit. Can't read or watch tv or do many many other things without feeling extremely ill tho 😓 

i wondered what Meds/combination of meds other people with hideous aura symptoms have had joy with? I think it's mainly epilepsy stuff?

I really want to be able to look after my 2 and 5 year old!!!! And not feel so ill I'd rather be dead- that would be nice too. 

 

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6 Replies

  • Posted

    I feel you. I had a very rough few months since Xmas and was at my wits end. I finally opted for migraine surgery on 13th April. While I am still recovering, my quality of life has really improved and I am very hopeful that I will be rid of migraines for good. I am planning to post again after a month as I will have a better feel of long term results with the surgery. Like you, I opted for this route so I could be a better mom to my three kids.
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    • Posted

      Hi thanks for your reply. What's migraine surgery? Was its for migraine aura or classic migraine? Thanks. Hope you get on well. Keep us posted. X
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    • Posted

      Hi, I had migraine with aura but I am not sure whether the surgery is specific to either classic or aura- it might be general. Essentially it was nerve decompression surgery to my two trigger points (temporal and neck for me). Two months prior, the surgeon ran a trigger Botox test on me and because I responded so well, it meant I might benefit from surgery. As I said, it is early days yet but I am very hopeful it will cure me. If you google migraine surgery centre, London, you should find more info. Best of luck. I will post again a month post surgery.
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  • Posted

    I was hospitalised in January as kept blacking out, vomiting, vertigo plus a range of other symptoms, this was continuous. I am now taking sodium valproate 1200mg per day and I now have 2 weeks a month I do not suffer as badly.

    I was diagnosed with chronic complex basilar migraine.

    Get well soon. It does get better, I still have a long way to go but compared to January am a lot better x

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    • Posted

      Hi. Thanks for your reply. God it's awful isn't it. I take clonazepam at night as my migraine keeps me awake. One of my symptoms was presyncope feeling. I didn't faint but kept feeling as tho I was going to. Hideous. This stopped to day after i started the clonazepam. I'm sure you don't want more meds but it might be worth s try. It's an anti epileptic and I guess different drugs work on different areas of the brain? Anyway, will you keep me posted and j will you. Good luck. Xx
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    • Posted

      Hi I just wondereed how things are going for you? Im having a bad time. Increased my dose of topiramate to 75 mgs. worse initially as expected then picked up niw worse again. /thinking maybe /i need to change my meds? What hospital do you go to. Im think ing og goin to theneurology one in /london. /itll kill me gettin there as Im in the midlands and really unwell but not happy with where /im at. O hope your doing better, xxxx
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