I am 37 with lots issues but none of them severe ... just bothersome.
I have classic type ehlers danlos syndrome. I have a "bulbous" vessel in my neck ... aneurysm? pre-aneurysm? These annies go along with EDS ... I understand this.
A NIH geneticist also thought I have blockage in cerebral spinal fluid. The symptoms of that are nausea in neck, pressure, nausea behind the eyes, sounds of fluid gushing around in my neck & pressure on my throat. Chiari malformation is also quite common with EDS so she was thinking maybe this or something related. My brother has both chiari malformation and epilepsy.
I have always had lots of other quirky symptoms. Episodes of seep paralysis, odd feelings of water dripping down my leg ( no doc has ever been able to exlain that one), periods of maddening de ja vu, maddening because it will occur throughout the day for several days at a time or even weeks and at one point when I was very sick it lasted for months, periods of odd spatial feelings ... floor moving, things of that sort. I also have lots of autonomic issues, gastroparesis, orhtostatis hypotension, orthostaic tachycardia, 2nd degree AVblock and quirky temp issues ( can spike high fevers w/o actually being sick).
At one point my doc thought I was having seizures, but the eeg at the time didn't indicate any. The NIH geneticist thought I probably do have seizures every so often On exam, she saw some eyelid clonus as well as nystagmus when looking to the left. There is a ton of epilepsy in my family.
Because of the bulbous vessel, my PCP want some to follow up with a neuro ... which of course I will.
The NIH doc said I need to have it followed, but I didn't need to worry just yet.
My daughter has had as stroke and has focal epilepsy. She was prone to complex partial status episodes but now her sz are failry well controlled with keto.
Here are my questions,
Do my above symptoms sound like partial sz ... or could the above be something else?
If partial sz. they almost always occur with certain meds ... at their worse it was after months of being on reglan, antihistamines and antiemetics.
Can people have partial seizures every now and again without needing AEDS?
Anuerysm, if my bulbous is an aneurysm and since it is in my neck, is possible it is from my neck always being bent? Because of the EDS, I am always feeling like gravity is pulling me down. My shoulders permantly sublux, it is difficult and takes effort to keep my neck straight. I am thinking of this vessel like a garden hose. When bent and water is constantly going through .... it becomes weaker at the bend or crease in the hose and sometimes they tear. Could my vessel be doing the same thing? Could I possibly slow down growth by having better posture, keeping my neck starighter and strenthening my neck?
Any thougths on what the sensation of water driping down my leg is?
Any thougths of what the feeling of nausea in my neck and behind my eyes is? Have you heard of this with chiari or anything else?
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