Basilar Migraine help and experiences

Hi All,

I was recently diagnosed with basilar migraines and have been in a cycle-or Status Migrainous- of them for almost five months without a single day of relief. I started topamax/ topimirate about a month and a half ago and it hasn't seemed to help at all. I'm currently on a mixture of other medications (stimulants, sleep aids, etc.) to help mask the symptoms and give me some functional days, but not ones that I want to or should be dependent on in the long run. I've cut out all of the big triggers I can but tend to be triggered by anything and everything. The symptoms change on a daily basis, except for the constant throbbing headache, vertigo/ nausea, and exhaustion. Most recently my speech has been quite slurred, my eyes (specifically behind my eyes) have been feeling hot and painful, and I get disoriented for varying amounts of time.

I'm being admitted into the hospital this week to try to break this cycle and to try out a cocktails of different medications.

I really want to come out of it with these migraines more under control and in an occasional state rather than a constant one and would appreciate any advice on how to contribute to doing so once I'm back home.

I would also love to hear any experiences people may have had with basilar migraines as, since it's such an uncommon type, I haven't met or spoken to anyone with them and it's very difficult to explain to/discuss with someone who hasn't experienced it.

thanks and well wishes to all,

Maya

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  • Does anybody in your family autoimmune disease including thyroid, any history of miscarriages, early strokes or heart attacks? MaryF

  • yes for miscarriages and early heart attacks, why?

  • There is an autoimmune disease frequently missed by the medical profession, particularly at times by Neurologists. Hughes Syndrome/APS. I have this myself. I enclose the blood tests you need to do, do them at the hospital as the samples taken are time sensitive, I also enclose the symptoms, and also related conditions. There is also a patient forum on here, but stay on this one also. Sticky Blood-Hughes Syndrome Support

    hughes-syndrome.org/about-h...

    hughes-syndrome.org/about-h...

    Anticardiolipin antibodies (aCL)

    Lupus anticoagulant (LA)

    Anti-beta2-glycoprotein-1 (anti-B2GP1)

    MaryF

  • Hi, 5 yrs:( I lost my job and obv my driving liscence. I feel for you. I am on 300mg topiromate and that has eased the sumptom. A little. My worse was a 3 month spell but every day I have it.. But last two years I also have Hemiplegic as well so new diagnosis of umbrella. Last few weeks I had cluster and had to go on oxygen and basically be knocked out.

    Please keep an eye on your eyes because I had the same thing and it turned out that out of the blue I got an autoimmune.. It attacked my eyes and without treatment I could have lost my eye sight. Of course after lots of tests they still don't know what caused it:( but I am in remission.

    I see dr surenthian- look him up- he has changed my life. I was on a cocktail- size effects gave me seizures etc. He just gave me one and brain rehabilitation. Although I am going on another one soon. Some unliscenced med- symptoms all changing. I am having too many Tia's.

    Like you I still can't find trigger.

    But cocktails of meds make it worse for me.

    To give you hope I have improved.. Although I have different types- nothing as bad in my eyes as basilar- daily sickness- vertigo- slurred speech- double vision, not being able to walk in straight line, walking lopsided.

    I can't turn my head still or look up and I still look like a drunk on days- but hey I am improving

    Don't let specialists fob you off. Do your own research.. I take control of it now more. The NHS make me worse at one point by just giving me more and more medication.

    Sorry for long reply.

    Improve soon😘

  • get tested for Hughes Syndrome/APS as per my answer above, it is frequently missed. MaryF

  • Sorry if reply does not100% clear. I have serious case of brain fog today😤

  • Maya i put a note on the other page you wrote on 😆

  • Hi

    I was diagnosed with Basilar migraine 4 years ago after spending 3 weeks in hospital were they thought at first I'd had a stoke . It's an awful thing to have but I can help you by saying it does get easier to manage . I have been on all the different medications and have now recently weaned myself off them . I now take stemitil for the dizziness and nausea and just paracetamol and ibufron for the head pain , I also have monthly Indian head massages which have helped . I recently had to go back to see the neurologist as I completely lost my memory for nearly an hour , he said it was a TG A (transient global amnesia ) which he said is very rare and hopefully won't happen again . I wish you all the best luck as it's an awful illness nobody understands unless they have it .

    Regards

    Barbara mcdowall

  • given the experience of my grandaughter the medications they throw at you cause a host more problems than they cure

    i am even concerned that the meds do long term damage

    i only wish there was a solution to any form of chronic migraine and i wish the neurologits would take the issue far more seriouslyand start listening to patients as opposed to throwing highly noxious drugs at them which do zero good and actually make matters worse

  • Yes! I have been on a variety of medications at this point, in the hospital and out, with some awful side effects, the worst being muscle-paralysis in-patient. I'm working with a headache specialist now that's great and am off the worst of the meds. It's a crazy process though, that's for sure.

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