Basilar Migraine help and experiences

[yayaquez]

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

[MaryF]

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

[yayaquez in reply to MaryF]

yes for miscarriages and early heart attacks, why?

[MaryF in reply to yayaquez]

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)

youtube.com/watch?v=V3J8BLk...(Not working as expected?)

MaryF

[Pear_8]

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😘

[MaryF in reply to Pear_8]

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

[Pear_8]

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

[Cally01]

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

[babsmcd]

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

[yayaquez]

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.