Thread by @UntoNuggan

pros: had a good appointment with my GP where I explained all the weird things about my headaches that make me think it's not a migraine

cons: my GP agrees that whatever is going on probably doesn't have a diagnostic code or like, any well-researched treatments

🫠

#NEISvoid

I explained some of the things I've been doing that have been working

My understanding of current research around positional headaches and EDS/MCAS/POTS

And possibilities indicated by extremely hot off the press medical research

My GP was like, "well we're officially outside the bounds of things I'm familiar with, so I don't know enough to say whether you're onto something....but I also don't immediately disagree with anything you've mentioned"

And we were both in agreement that...I don't even know what kind of doctor I would see about this? Lol

Anyway my current hypothesis about my mystery headaches is:

There seems to be a pattern in EDSers

Headaches that bounce between high intracranial pressure, causing idiopathic intracranial hypertension

And spinal CSF leaks from the high pressure, causing low pressure headaches

I *seem* to have some kind of problem with maintaining my intracranial pressure

When I lay down - even for half an hour - there's a build up of fluid that causes headaches

I can prevent this if I spend ~2 hours on lymphatic drainage techniques before I sit up

However, I also seem to have some intermittent low pressure headaches very similar to after my lumbar puncture

But they often resolve without me having to do all the "you have a CSF leak" stuff

These seem to be connected to MCAS flares and possibly neuroinflammation

Um... intracranial pressure is not supposed to fluctuate so much within the same day?

And also I don't know for sure that mine is, but it's the only thing that would explain all the weird parts of my headaches

So...what would cause these kinds of intracranial pressure fluctuations?

That's the part where I'm officially outside the bounds of current medical knowledge, because um. I have not actually found a description of this type of headache in any medical textbook?

I'm just extrapolating based on my lived experience and things that are documented in the medical literature

My current best guess is that I'm dealing with some sort of dysregulation of my blood brain barrier and Chloroid plexus (the parts that allow more fluid into the dural "sack" holding my brain)

And/or dysregulation in the parts of my brain that drain excess cerebrospinal fluid

To my knowledge, we don't currently have a way to measure things like "is your blood brain barrier fluctuating between too porous and not porous enough"

Or "are all the veins in your head draining too fast and/or too slowly"

I do have several ideas about what could potentially cause this type of intracranial pressure dysregulation

But again, I don't have a lab or a research budget or a science degree

I'm just extrapolating based on reading a lot of medical journals, and what my body feels like

Mast Cells are involved in regulating the blood brain barrier (because of course they are)

They do this by sending chemical messengers like cytokines to the endothelial cells that actually gatekeep the blood brain barrier

So MCAS could easily...cause a lot of havoc

POTS frequently causes Cerebral Hypoperfusion (not great blood flow to the brain)

Cerebral Hypoperfusion can affect the blood brain barrier

There's a bunch of autonomic nerve roots in the Choroid plexus (the main part of the brain that makes cerebrospinal fluid)

We...do not know what they're for (although I think @remissionbiome has ideas that overlap with some of my weird hypotheses)

Dysautonomia could cause havoc

As far as the drainage part of the whole cerebrospinal fluid system

That's mostly regulated by things like your physical position, gravity, the connective tissue lining your veins, whether any of those veins are compressed...

And also cardiac function, because things like your blood pressure and especially the pressure of the blood vessels inside your abdomen (intra-abdominal pressure)

Affect how much cerebrospinal fluid drains from the sack surrounding your brain

Which like...there are so many different ways POTS, EDS, and/or MCAS could create havoc with vascular drainage

(Including venous sinus stenosis, but treating that would be unhelpful if/when my intracranial pressure drops too low)

So far, things that reduce neuroinflammation (eg green tea/antioxidant-rich foods, low dose Benadryl, low dose aspirin)

And the Meningeal Lymphatic Drainage techniques

And supplements to support endothelial function (L-arginine and Vitamin C)

Are what's helping the most

But uh...I guess it's good I'm connected with lots of people sharing potentially relevant medical research and experiences on Twitter

Because I wouldn't have figured out half of my life-saving life hacks without y'all sharing so much info

Anyway there's some kind of idiopathic intracranial hypertension database that people can opt to join if they have/had IIH

And I am considering reaching out and seeing if anyone is quietly researching something related to this? Idk

It's that and doing science on myself lol

There's so much potentially relevant research that's just starting tho

"The CSF circulation around blood vessels penetrating from the subarachnoid space ... [provides a] site for the interaction of the systemic immune system with that of the brain."

fluidsbarrierscns.biomedcentral.com/articles/10.11…

Plus researchers *just* proved that the lymphatic system actually does reach the brain, and is probably important for CSF drainage somehow

Like in 2017 or something? So yeah, love that this research exists, frustrated it's not faster

frontiersin.org/articles/10.33…

Anyway, today was also an exciting experiment in "have I figured out the magic key that lets me have enough energy/words to actually be able to communicate with my doctor"

Because I keep... losing language during long appointments (written, speech, even AAC cards and apps)

[medical diet]

I thought those symptoms were probably due to fatigue and POTS and all the travel

But I realized I'm having them during some telemedicine appointments too? Even if my feet are propped up and I'm sipping electrolytes the whole time

[medical diet]

Then I realized that my "no language only vague nodding and the sense I need to get help leaving" symptoms?

They happen whenever it's been too long between snacks

[medical diet]

I've been all convinced that my mystery "it's been too long since I ate, and now I'm probably having hypoglycemia" symptoms were SO much better

But um, I think they're just better managed. And I still need to eat ~7 high protein snacks per day

[medical diet]

So I'm definitely following up with the endocrinologist about the horrible tests

But in the meantime, if I bring enough snacks with me to medical appointments? I can actually language! 🎉

The mystery "probably hypoglycemia? but who knows?" symptoms are a whole different exhausting rabbit hole ugh

Also just... incredibly frustrated and grieving about all the people who are dealing with this kind of "medicine doesn't know yet" symptoms

Because I know there's way more of us than the medical system wants to acknowledge

And teaching yourself select pieces of medical knowledge so you can research your own mystery symptoms is...Not accessible

especially when you're just trying to survive your chronic illness and insurance shenanigans (or not having insurance shenanigans) and medical appointments

[medical trauma]

The times I have saved myself from serious side effects or even *getting the wrong medication* by knowing enough to realize what was happening and refuse treatment til I could argue with a doctor?

Is way more than zero

[medical trauma]

So like...that mostly just fills me with concern for everyone else trying to navigate medical care

Because it shouldn't be this hard to just...try to get help

But it really, really is so hard