Lauren

Posted , 5 users are following.

Hi,

I'm struggling with multiple migraine symptoms and have been diagnosed with hemiplegic migraine, basilar migraine, and vestibular migraine.

I'm experiencing vertigo symptoms with partial hearing loss (like im under water), absent moments with disorientation, temporary paralyis down one side and severe neck pain and pain in the back of head.

I have no pounding headache this time around like i use to get with the 'regular' migraine.

If anyone can offer help or advice id really appreciate it please as im struggling so much.

Thanks

L

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6 Replies

  • Posted

    Hi Lauren, I am close to being diagnosed with vestibular migraine...just need to complete balance testing to rule out inner ear nerve damage. I am also going through perimenopause, which comes with its own bucket of symptoms. You could still be having migraines without the actual pain. Have you tried any meds? I am currently on nortriptyline...about 5 weeks in.

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  • Posted

    Hi Lauren I'm sorry you are struggling so much are you under a neurologist? If so make ab appointment with them and if you aren't speak to your Dr about a referral. I have several types of migraines too and I have mine regularly monitored by my neurologist including brain scans etc. Medication may work for one type but exacerbate another so it can be trial an error unfortunately. I am now on Topiramate which although the initial side effects are tough until they settle it has been absolute fantastic in helping my migraines. I try to keep a migraine diary to keep track of my triggers and if there are new triggers so i know what to avoid. There are general triggers but I think we are all so individual like one of my biggest migraine triggers is a change in the weather yet i am unaffected by a more widely known one such as caffeine.

    I have found that since cutting out dairy my migraines have dramatically reduced and I would recommend this to anyone struggling. It was not something I did for migraine reasons, I went from veggie to Vegan and I just noticed my headaches start to disappear!

    I used to get a migraines daily and now i get about 2 a month which I control with heat pads and paracetamol.

    I find that physio and strength training helps with the hemiplegic migraines. I use things like stress ball to improve my grip and prevent weakness.

    If you have any questions or want a chat feel free to message me.

    I hope you get through this difficult time.

    Sending positive energy your way Xx

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  • Posted

    Hi Lauren,

    What medicines/treatments are you having at the moment? I really do understand as I get HM as well as cluster headaches and its been very bad to treat.

    I will tell you what has helped me. A drug called Flunarizine (If you live in UK you can get this from the specialist) Botox, which is free on the NHS and help with managing stress levels.

    Let me know if anything has been a help to you Laurnen,

    Take care

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    • Posted

      Hi,

      Thanks for the reply.

      I currently take lamotragine, gabapentin, sertraline and 500mg of magnesium a day. This has all been prescribed by my neurologist who is a specialist in complicated migraines. The meds were working for 4 months with hardly any symptoms then suddenly I had trouble sleeping for a week and then it all started again. I've had the gabapentin increased which doesn't seem to have done anything. I've been reading online about a sensitised brain stem and that issues could arise from the neck. Have you seen anything on this?

      I'm honestly at a loss of what I should/ shouldn't be doing anymore. I feel like I'm taking so many meds which are draining me and aren't actually helping.

      I'm also convinced that I have a form of epilepsy still due to the absences I'm having. I have this exhausted feeling come over me, then I have a complete mind block where I can't think or know what's going on around me. I become really disoriented then they pass after about 30 minutes. I use to have similar episodes when I was a teenager but they lasted for long periods of time- 1-2 weeks often.

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    • Posted

      Hi Lauren,

      You are having much more serious symptoms than I get and it sounds complicated too.

      I haven't heard about the brain stem issue you refer to sorry.

      My best advice would be is to visit your specialist again and explain these new or reoccurring symptoms,

      But I hope you get back to me as I would like to know how you get on.

      I can only tell you what has helped me cope with my migraines etc.

      So, good luck Lauren, keep in touch.

      Take care

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  • Posted

    Hi Lauren, I could have written your post, its difficult for me to give out advice after suffering with Hemiplegic migraines, because I have spent the best part of 14months taking myself off medication and have been med free for 8 weeks, apart from taking magnesium and q10. I decided to quit cold turkey after my final bout of cluster hemi migraines and being sent to hospital for a ct scan to make sure I wasnt having a stroke. Apart from the horrendous withdrawals and being signed off work. After 8 weeks, I have not had one migraine, its still early days I know, went to the optician today and the light did not set me off and also partied new years eve and that didnt set me off, both would have done a few months back. I dont want to encourage you to go off your meds, I just think its good to be aware of any possible side effects and query them with your neurologist, just in case. I have to wait a few months to know for sure.

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