So, all those hashtags are stuff I have thought this is but apparently it's really something else... although I do have the seizures.
For years I have thought I had all this stuff and sometimes I just passed for apparently no reason besides that my head apparently likes the floor. I always got a whole batch of seemingly unrelated symptoms, often at the same time. The real winner was the crushing headach (I mean really impressive) with nausia, dizziness, and sometimes confusion or difficulty speaking, or memory loss. But this came with a bunch of scary level "allergy" looking symptoms too.
There has also usually at least seemed to be an "alergy trigger." That
has usually been a water damaged building or bread baking, although deasil fuel absolutely hates me, as do some perfumes, and second hand pot. Also, just plain exercising in cold air does bad-bad things. The result is a bunch of surpluss mucus in all the wrong places, a serious tightness in my chest, a cough that just wouldn't let me catch my breath. I have passed out plenty of times, or else had periods of time I can't remember, and then there would also be inflammation to follow, usually sore joints and just bone crunching exhaustion.
I never got a real allergy test because I guess I was raised to be tough (not in a good way) and, the allergy wasn't life threatening ( I have had people conclude otherwise, but I always took it for granted this thing is survivable). I figured, what could anyone do about it anyway?
A few times friends bundled me into an emergency room, to get checked for a brain aneurysm, stroke, cancer, or a concussion, but when nothing showed on the scans the hospital staff was usually shockingly disrespectful and I guess I just didn't like the implication that I was "faking," "wasting their time," or "being a sissy." That stuff was always getting thrown around both in medical settings and at home too, especially when I was still a kid, though it continued as an adult (on the few occasions when I did try and get some help). I absolutely felt guilty for being sick and kept it to myself as much as I could.
Milder forms of this kind of symptoms were already part of my life when I was 7 or 8, but as an adult things have mostly gotten more dramatic. These days I am dizzy (at minimum) most of the time, I have also had car accidents during periods of time I am pretty sure I can't remember. I currently don't drive because I'm scared of killing someone by accident.
I don't go places where I might encounter the stuff I think are triggers. A lot of those are fun places that I really want to go (restraints, breweries, concerts, people's houses), but the simple fact is that accidently convincing everyone I might be iminently dying of a brain aneurysm (that seems to be the go-to bystander assumption when I have a bad eppisode) is about the most surefire way there is to ruin a perfectly good evening FOR EVERYONE (especially me, obvs.)
I also don't want to go to the ER for scans that show nothing and staff that are rude, and so there is usually a big argument between me and whoever is around. Durring that argument I'm probably not actually saying anywhere near all the words I'm thinking, and if I'm conscious enough, getting enough air, and also not puking, then i'm probably heavily slurred. A lot of the stuff I'm reporting is stuff I don't remember either. People tell me about it afterwards.
This experiance is a lot like having been really drunk, but without the alcohol. Whatever I'm saying, during one of these episodes, nobody is particularly inclined to think much of my judgement at the time, also, much like if I was drunk. That said, as the years have passed, most people who are close to me have gradually learned to accept that the emergency room is going to be a way to spend all night and a bunch of money being really uncomfortable, to no result.
Recently, I started to see a therapist for PTSD and she started to get nosy about why I don't do most of the things I want to do. These days I mostly stay home, full stop. Keeping me employed in a way that doesn't constantly trigger my symptoms has proved to be either impossible or just more trouble than the pay is worth. My wife has a good job, a sec onds income would be nice, but we don't really need the income, though my ego definitely wants that, and so much else that isn't comparable with having PTSD and a mystery disease. Part of the reason I stay in is the result of the PTSD that got me to see the therapist, but a lot of it is that I'm just scared of encountering mold, bread, diesel, pot smoke, etc. and ending a perfectly respectable day with an unwanted trip to the ER. Sure, at this point that might be a perfectly respectable second reason to have PTSD, but my therapist started pressuring me to see an allergist, in the hope I might get allergy shots and just end up with less risks to worry about.
My wife also finally saw me pass out, on Christmas morning no less, and what she described was textbook for a seizure. This is the first time I have gotten a clear description of what it looks like when I am out. My doctor gave me referrals to both an allergist and a neurologist.
So, just a couple days ago, I went to the allergist. What he told me has me absolutely shocked and confused. The allergy tests he did were almost all negatives and nothing that was positive was really, really strong positive. What he told me is that it's probably my nervouse system that does all this weird stuff, even actually triggering off stuff like mold, yeast, diesel, perfume, etc. much as if it were an allergy, but just neuro, not an allergy.
It really sounded like this allergyst didn't have much real information. He is an allergist though, not a neurologist. I do have a consult with the latter coming up, thanks to the Christmas seizure thing.
All the allergyst really told me was that the condition he thinks my nervouse system has usually gets worse over time and that I need to keep avoiding all this stuff, which feels like half the world, to try to minimize how fast things get worse. On one hand I'm actually more glad than I can express to have somebody just finally say they have heard of other people living like I do, but I'm also just stumped and confused because this is absolutely the first I have heard of this. I'm also scared of this getting worse and sad to still get told nobody can actually make my situation work any better. Has anyone else on here heard of this condition?
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