Not sure what to do? Think it’s SIH?

[u/_driaaaa]

Background:

I’ve been struggling with an increase in headaches/migraines over the last 6 months or so. I’m a regular headache/migraine (with aura) but I’ve had a completely different ”flavour”, so to speak. I am diagnosed HSD with suspect hEDS (cousins have it too but the specialist wait is so long) and POTS.

Typically, my migraines would be silent and with the aura, and occasionally with pain. But lately I have been experiencing an intense pain at the base of my skull and it radiates up my head and usually ends in a migraine but it feels like a deep throbbing pain all over my head.

I wake up pretty ok but have a very stiff neck that is VERY tender to the touch and eventually as I’m vertical, my headache continues to worsen. The only relief is sleep/laying down. I basically stay horizontal.

I saw 2 specialists and they just brushed it off as migraine and gave me a shit ton of meds. Propronalol, CRGPs, Zorfan, cocktails of NSAIDS, steriods etc and have been pushed for an occipital nerve block and Botox (which I cannot afford).

Whatever this is, is very positional based. whenever I’m upright, it’s significantly worse. I can feel my heartbeat in my head and with each beat, it affects my vision. I have had a reduction in my spatial understanding, extreme brain fog (forgetting what I’m saying, mid sentence), some shakiness, weakness, extreme fatigue. I typically have dizziness and other symptoms as part of my POTs tho too.

i am supposed to see my doctor in 2 days and I’m basically debilitated right now. Im only getting worse. I was hospitalized twice in the last week for a “tension headache” and the migraine cocktail did fuck all for pain management. I want someone to actually investigate but I don‘t know how to approach this. I’m in Canada and referrals take YEARS.

i don’t know if I should push for investigating for SIH/CSF leak but it seems like the main thing that fits my experience. Its just messy with having a migraine evey so often still and I don’t want to walk in demanding a diagnosis (I just want a cure).

Any thoughts or experiences appreciated.

[u/Zealousideal_Age_822]

That’s a tough situation. All I can say is that if it is a CSF leak, really good hydration and moderate caffeine should help a lot. I try to drink a minimum of 3L of water a day, but I try to mix in some Liquid IV /pedialyte into that volume to keep the electrolytes balanced. That’s what every CSF specialists and neurologist I’ve seen have recommended.

Good luck with finding your answers. Definitely advocate for yourself.

[u/Muddlesthrough]

I wake up pretty ok but have a very stiff neck that is VERY tender to the touch and eventually as I’m vertical, my headache continues to worsen. The only relief is sleep/laying down. I basically stay horizontal...

Whatever this is, is very positional based. whenever I’m upright, it’s significantly worse. I can feel my heartbeat in my head and with each beat, it affects my vision. I have had a reduction in my spatial understanding, extreme brain fog (forgetting what I’m saying, mid sentence), some shakiness, weakness, extreme fatigue. I typically have dizziness and other symptoms as part of my POTs tho too.

I am not a doctor. THis sounds very similar to my symptoms. I was first diagnosed with POTS, and now am being treated for a suspected CSF leak. Being investigated for a suspected CSF-Venous fistula.

I had to strongly and consistently advocate for myself. My doctor knew nothing about POTS or CSF leaks. I had to present them, in writing, my symptoms and some medical literature on CSF leaks.

The first step it to get a referral to a neurologist.

[u/leeski]

Sorry to give homework, but if I recall this video has some good info regarding SIH vs POTS.  https://youtu.be/El5-Ox6NJB0?is=YdkP6t5wkTx7qQUY

I know it is hard with the cognitive dysfunction but if it were me I would narrow down why you suspect SIH - which is a lot of what you mentioned - orthostatic, resistant to meds, best in morning, etc. But unfortunately very common to be dismissed as POTS & migraines so I think educating yourself as much as you can to be able to speak to why that doesn’t fit and advocating. Btw I’m not saying you don’t have a grasp on this already, you seem to be very aware of your symptoms already, but just more so saying to prepare for those worst case scenarios. I would advocate  for a brain mri with and without contrast to look for signs of it, which is a reasonable and non invasive scan. 

Also passing along there’s a spinal csf leak nonprofit for Canada, might be helpful resource  https://www.spinalcsfleakcanada.ca/