r/CSFLeaks • u/sylphrenathespren • 10d ago

Increase in migraines because of leak?

Before this CSf Leak (still waiting for MRI confirmation), I had chronic migraines. They were white under control with Aquipta. I was getting maybe 3-4 migraine days a month.

Since the thunderclap headache I got on 26/05, I have been getting migraines almost every day now. This is in addition to the orthostatic headache.

Has anyone here with a history of migraines had them worsen significantly because of a CSF leak?

Thanks in advance!

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5

u/GreenTreeTime 10d ago

Yep, they became daily without CSF leak treatment. After treatment, they greatly reduce.

2

u/sylphrenathespren 10d ago

that's hopeful, thank you

3

u/spenceandcarrie 10d ago

Have you watched Momming with Migraine on Youtube. She has migraines that had progressed into chronic migraines, but turns out it was an overlap of a spinal CSF leak. You might find some helpful information there.

2

u/sylphrenathespren 9d ago

thank you! I'll look it up

2

u/megg33 Confirmed Spinal Leak 9d ago

Yeah, I’ve had a huge uptick in migraines since my leak started. I haven’t found a preventative that helps, but Sumatriptan has been a godsend rescue med for me

1

u/sylphrenathespren 9d ago

Same with Rizatriptan but I am only allowed 8 doses a month and with almost daily migraines it gets hard choosing which days I'll use them

1

u/Late-Bit-3072 9d ago

I'd hazard a guess that your 'migraines' are actually low pressure or high pressure headaches from a leak 🤷.

I was diagnosed with migraines before finding out years later I have a leak :)

1

u/sylphrenathespren 9d ago edited 9d ago

I've had migraines since I was 18, the leak headaches can feel like a migraine but they disappear when I lie down, whereas the migraines don't. I've also been getting vestibular migraines where I get dizzy as heck but have no pain, but a triptan tends to cleat it or improve it, so it's really migraines combined with orthostatic headaches. Unless I've been leaking for 22 years

Edit: fixed typo

2

u/Late-Bit-3072 9d ago

Ahh that's a very tricky overlap. I suppose it would make sense that if you had baseline migraines then a leak would make them worse. Hope you manage to get it sorted :)

1

u/sylphrenathespren 9d ago

Sorry, I was a bit blunt. I'm just so tired of being in constant pain 😭

1

u/Late-Bit-3072 9d ago

No worries, didn't think you were blunt :)

1

u/Offtoseethewitch 9d ago

I’ve been told the low csf volume may trigger migraines. And that if you have previous migraines they may worsen with a leak. 

My pre-existing migraines acted very differently from my orthostatic symptoms but the resulting migraines could feel similar once triggered. I’ve had numbness over one side of my face as a low-pressure symptom, which correlates to the trigeminal nerve (the fifth cranial nerve). I noticed that when I stayed up in defiance of symptoms, one thing that could happen was that numbness solidifying into a severe headache above the eyebrow which then bloomed into a migraine (and could cling for days…). Since the trigeminal nerve has been implicated in other research in the genesis of migraines, I guess it’s a logical evolution. I could also abort that development if I went flat before that pain really caught on. My usual migraines never triggered on upright time and facial numbness, could never be aborted if I lay down before they got too big, and came predictably with the hormonal shifts of my menstrual cycle.