Edit; Our newer theory that our symptoms is in part a form of partial seizures caused by histamine reactions (commented on it in a reply), at least feels accurate enough for urgency. This seems to be getting worse. including a neurological scar in our brain we can percieve, as a light headache-line, that we'd previously thought was from trauma. we think it may be getting larger with each episode. (it consists of two headache 'lines' in our brain- previously it was only one line afaik- and the area in between the lines, while thin, feels. 'empty'..)
if anyone has resources for *covid concious* partial siezure support irl local to brooklyn ny, or at least regular online check ins from someone knowledgable, we'd immensly, immensly appreciate it.
We're looking into doctors but don't know how long it will take to see them, if we will before further harm to or by us. We'd get a support animal but can't in this apartment.
please help if you can, thank you.
original message below;
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We are a plural collective with a form of mast cell disorder. We know this due to antihistimine medication and diet being enough to seriously reduce our symptoms, however we have yet to fully adress and stabilize them.
One of those symptoms is a form that no individual we've met or heard of, so far, has any direct knowledge of. We are seeking information on it, both so we can better adress it, and so we can better discuss it with others and ourselves.
When we are having a histamine reaction, or histamines are too built up in our body. Some combination of our symptoms results in heightened fear, as we understand is typical for epinephrine reactions.
For us, uniquely. This also comes with extremely heightened paranoia, sensitivity, and defensiveness. Which is what we cannot fully understand. Even if we know it might be coming, and even if we prepare for it ahead of time, we are not sure what if anything we can do to prevent us from causing harm as result of this. (Beyond extreme over-compensation like 24/7 psychiatric drugs, even when not having a reaction)
This state of mind seems to sneak up on us and cause us to act out, over-reacting, toward percieved threats (real and not) before we can stop it. Before we can calm ourselves down enough to be concious of our state of being.
It is extremely difficult for us to differentiate this state from legitimate c-PTSD panic attacks and anger, even to the point of not being sure if we've ever had the latter.
In theory someone living with us should be able to spot it, or maybe even a support animal. But we cannot obtain either in our current living situation.
We have met and heard from others with mast cell disorders who say a panic attack kind of state is a common reaction to histamines for people with them.
But none have recognized our extreme paranoia- the often seemingly irresistible compulsion, to falsly see someone/thing else as the cause of the entire reaction. Which always ends when we remove enough histamines (via diet and medication).
Let alone been able to advise us on how to handle our emotional reaction to this in the moment and after, or how to discuss this with others.
So what is this? Can anyone please help us understand this?
Thank you!
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