Arterial Spasms, vasospastic disorders, and ES

I’m back! Again!
I’m still fighting the stroke like symptoms sitting up, using my head and arm, but with a little less intensity.

Just met a rad Neurologist (that’s doctor number #59, Neuro #7 for those keeping score) who is Not just the King of Neurologists because he looked me in the eye and didn’t shoo me out of his office, but because he is also familiar with ES.
Including the vascular type and the weird symptoms it can create with memory and limbs.
He also has some theories -again, that is theorIES, as in more than one- as to why people with ES continue to suffer from pain and cognitive symptoms even after corrective surgery.

The current theory being pursued is arterial vasospasms.
He explained to me that similar to your arteries retracting due to trauma, injury or cold (kind of like a frightened earth worm being poked), they can develop a similar reaction after a prolonged period of irritation.
The threshold of reactivity becomes so low that even after the primary irritation is removed muscle spasms, pressure of normally contracting muscles, and even outside pressure such as clothing or weight can cause them to Freak out and constrict limiting blood flow.
To people with ES, this often means limiting blood flow to your posterior brain or arms (Subclavian artery, basilar artery, vertebral artery, carotid artery, etc).

He said it was a similar issue to Raynaud’s Syndrome and certain types of migraines. Only the trigger isn’t stress or smells or cold, it’s trying to move around.

Plan A is putting me on Verapamil to force the arteries to relax and hopefully lower the threshold of activity.
It’s only day 2 now, but my worst “Stroke out” today is at the same level as “Doing my best” last week. Trying not to get my hopes up, but it seems to be aiming in the right direction.
It’s also hard to tell how functional it is since I am Forbidden from doing anything after I take it. I naturally have low BP and this stuff makes it drop through the floor. He doesn’t want a head wound on top of mysterious crippling illness.

I plan on making a longer post going into the details of vasospasms and how they relate in the future. At the moment, I’m having trouble finding scholarly articles or good information that Doesn’t involve a pre-existing anyeurism.

Has anyone else heard of this or have any experience with treating symptoms on the artery level?
Does anyone else here take BP medication and finds it has an impact on their ES symptoms?

Sorry that you’re still getting some symptoms, but the new doctor sounds promising. Let us know how you get on with the new medication- hope that it helps.
Haven’t heard of anyone else with this, although not everyone comes back on after surgery… only similar symptoms I’ve heard of anyone having is POTS symptoms.

hey there, this is an intersting theory, looking forward to hearing more.

can I ask… have you had a brain mri? in light of stroke like symptoms? The reason I ask is that my brain mri is riddled with lesions which could be ischemic. Stands to reason that having around 150 tia type episodes in an 18 month period, might actually have created ischemia in the brain. I have cognitive dysfunction, initially dx’d as tbi but now I am wondering if the brain damage is actually from vascular ES and all those vascular episodes?

also dysautonomia - in my case, undiagnosed until last year, POTS and OH. It’s a heady mix (pardon the pun)

time will tell

only now getting referral for ES assessment as the ES was overlooked on all previous imaging dating back to 2010. My dr asked the last imaging place who did CT angio in Jan 2015 to review with details of styloid processes. A reply was sent back saying I do have bilateral styloid elongation and calcified ligaments consistent with ES.

Oh wow! As far as I’ve read the vasospasms can lead to ischemia, but i don’t know enough about it to even start guessing if your lesions are related to es. It seems a lot of things can cause them to occur. are you still trying to hunt down what caused the lesions to start (like a fall or other vascular issue?) or working towards dealing with symptoms?

I’ve had a few brain pictures and it seems to be fresh as a daisy. Which is awesome, but leads to most doctors shrugging and shuffling me away.