Basilar Migraines Help!

Hi All,

(I also wrote this in another community but can't seem to unhide it from just there so here it goes again)

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,


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2 Replies

  • Hi although I wasn't actually given a difined name for my migraines you sound pretty similar to me ,I was on a number of drugs before being put on topiramate , after about 6-7months of forgetting words,slurring and generally feeling that I had been beaten around the head ,a brain scan and blood tests reveiled that I had a small piturity humour that was increasing in size due to being sensitive to medication, I was offered a solution and for the past two and a half years I have been going to the QE in Birmingham to have botox injections into my scalp,neck and shoulders every 2-3 months.It has completely alleviated my migraines and I only seem to get one occasionally when there is low pressure rain about or I am really stressed out .When I first went it was a very small clinic it is has had good success results and a clinic is run nearly evey day .I would recommend that you eplore this option with your neurologist and see if there is availability near you, it has transformed my life.

    Good luck Lisa

  • Hi maya 😆

    I hate when you are given a label of which migraine type you have, i don't really care what they want to call them, personally don't trust a word of it.

    I seen three neurologists and none of them agreed with the diagnosis, so i have hemacrania continua migraines, Basilar migraines or cluster migraines.

    I was in a migranous state for 20 solid months with no break.

    I had DHE (kickstart treatment by IV ) it done nothing, tried every prevention med , pain relief ( inc bottles of oral morph and pain relief for end of life people) , purchased cefaly, tens machines,botxo twice - 33 injections, Occipital nerve blocks twice, tried supliments ( although b12 and magnesium helped eye pain ).

    Nothing worked but i was noticing more and more that my left jaw was sore, i sourced the best maxfacial consultant and he done an mri ( i had 2 mri and 2 ct scans done by neurologists but they didn't look anywhere but the brain) the maxfac guy told me within 10 mins of my scan that i have no cartilage on the left side of my face. I've had one op and waiting on another but to relieve my pressure i have cerezen in the meantime.

    I woke with terrible pain behind my eyes, back of head, temples and neck. If i didn't jump out of bed immediately i would get a full blown migraine. Persistent daily headaches which escalate to migraine daily.

    Sumatriptan injections for fast relief/ 100mg tablets for slower relief. Opiates just dulled the pain, didn't help me function on any level. I would wrap my head in ice ( heat made me worse ).

    I know this is long but i wanted to explain as much as possible because TMJD is very common and often diagnosed as migraine and mistreated unfortunately. It mimics migraine.

    Take care and welcome 😆 your in the right place 😆

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