Chronic Migraine with Brainstem Aura

[Benny210]

Hi there all,

It seems on browsing through posts and other migraine sites that only a small number of people have either been diagnosed as above or talk about it. I was diagnosed as such 6 years ago and in the first place it was very problematic and it's never settled down. My most regular symptom is vertigo (I was originally diagnosed with Meniere's Disease due to an extensive history of problems with my ears and hydrops on my MRI), but I get pretty much every symptom that you would see under this condition and recently I've started having seizures which have been diagnosed as disassociative.

I'm hoping that some people can share their stories about living with this rare type of migraine and how it affects them on a day to day basis. I am now registered disabled and am unable to work and very rarely will I go out alone due to typically receiving no warning of an attack of vertigo / seizure and have collapsed in the street numerous times.

I'm 38 now and sometimes feel so hopeless and helpless.

Hoping for a response on how other deal with this incredibly disabling condition.

Thanks,

Ben

[Frodo]

How awful for you, Ben.

I can relate to an extent although my diagnosis is 'migraine with complicated aura'. It took years to get this diagnosis. I do feel effectively disabled by the sudden onset and unpredictability of the symptoms. I haven't collapsed as completely you have but I had a period where I was close, as I felt as if I was falling sideways as I walked, and had attacks of jumbled speech, sudden onset nausea and dizziness etc. The head pain can escalate from manageable to uncontrollable very fast as well.

There is no simple answer to dealing with it and it is hard to accept, I agree.

My main positive changes have come from giving up eating gluten, having treatment with B12, and a trial of a neuro stimulator. Taking magnesium and B2 are also frequently recommended by specialists. Some people have results from medicinal legal CBD oil (expensive though). Acupuncture might help (again expensive)

When I finally got my referral to a headache specialist (not the neurologist - he was useless) it made a big difference to me. It was a long appointment and I finally, after years of being dismissed and even laughed at, felt listened to and taken seriously. I hadn't fully realised until then the toll taken by the fear and isolation created by this condition.

So my suggestion is that you try to see a headache specialist, or a pain clinic, or counsellor, and also review all your treatments, diet, supplements, exercise (if you are able to exercise - you could try tai chi which helps balance, maybe via a DVD at home) to try and get back a sense of being supported and being in control.

Every small increase in self management and control and every few days without a migraine is positive.

[Benny210 in reply to Frodo]

Hi Frodo,

Thank you for your reply and sorry that you also have to deal with a lot of these awful damn symptoms. I am going to try your suggestions and will report back, hopefully with some positive news.

Hope that you're well and thanks again,

Ben

[Cally01 in reply to Benny210]

Hi Ben

I was diagnosed by neurology as vestibular migraines at 12yrs old, now 52 and had another neurologist diagnose hemacrania continua. Honestly i think they just like to give you a label.

My migraines were always hormonal and wiped me out for 7 days every month until 4yrs ago, all hell broke lose.

My migraines became uncontrolled and unmanageable, daily headaches that escalated to migraine every day for 4yrs, 3 neurologists and 3 different diagnosis. I have absolutely no faith in them, diagnosed myself and found a specialist who confirmed my fears. My face was very sore on the left side of my jaw. Long story but they thought i was crazy when i said my jaw was causing my migraines. Ended up i was unfortunately correct. No cartridge on the left side of my jaw, no support. Operation within days of diagnosis and locked my jaw. I still get aura migraines on top of jaw migraines but botox helps.

I was dizzy every day, i forgot /had no clue how to get home when i left the shop, confusion with family members names etc i felt like i was taking a stroke up to 6 times an hr i had no idea what was happening.

I've had all treatment /prevention meds, gadgets, supplament cocktails but the only relief i get and it gives me some painfree days is cbd oil, a tincture from herbal gp and breathing excersise.

I wish you luck on your journey 👍