I'm baaaaaack, soliciting advice (with caveats)

[untonuggan]

Thank goodness. If you want full details of really know-nothing doctors you can check it out on fucking_docs .

For how I'm feeling, read on! I am doing ok, still seizing or pseudo-seizing or NESeizing wtf you want to call it technically.

Seizures are less scary than they look, at least for me. I stay conscious when I have an episode, which is so totally not what most people do. So I can kinda use mindfulness to manipulate myself a half inch closer to a chair sometimes, or switch the convulsions from legs to arms. Sometimes also I can keep the seizure from happening for a bit (current record: 4 minutes) but the payback is a headache and then a lot of seizures.

But when it actually happens, the convulsions, it's just kinda like being shaken up. No biggie. Try not to get bruised. Sometimes when it ends I can't talk right away or move right away, but that goes away.

Weird things about my episodes (for science!):

• I'm conscious
• I remember what happens during them
• I can respond to external stimuli
• They don't happen when I sleep
• I can feel the "aura" thing, which I guess is not weird because other people can too, but for me the aura is weird and new
• They started out of the blue
• According to the EEG, I don't have a "brain storm"
• According to the MRI, I'm "normal"
• See: holding them off for a time, above.
• cold is a trigger, particularly if I'm shivering

things like an epileptic seizure:

• Bright flashy lights are a trigger
• My muscles twitch or convulse without my direction during the episodes
• I go stiff during them
• I have trouble breathing
• I breathe fast or cough towards the end
• Sometimes it takes me awhile to "wake up"
• According to a friend of mine who works with a lot of kids with epilepsy, they seem "just like" epileptic seizures in terms of symptoms (some of which I may have forgotten)

 Here is what is helpful:

• good thoughts, hugs
• information on seizure service dogs (I know there was someone who had some info but I've lost the email)
• information on weird types of seizures
• rec's for good places to go for weird seizure disorders in the mid-Atlantic Region (near NoVa ideally) AND/OR places to fucking avoid
• coping tips for seizures
• people who might be good resources for sharing their own experiences with seizure stuff (but please, ask them first)
• info on: Lyme and Seizures; POTS and Seizures (feel free to give me targeted internet search results here!)

Here is what is not helpful

• horror stories
• anything to do with how you think it probably is a conversion disorder/pseudo-seizure/etc. Just don't want to hear it. Sorry! Not enough ticky boxes have been crossed off for me to cross that bridge.
• advice/info not listed in the "helpful" section. It might actually be helpful, what you are thinking, but I only have about a teaspoon of cope right now and it is taken up by having had 10 "episodes" in an hour earlier. So please stick to the list. Thanks!

Comments

[untonuggan]

**hugs**