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

[rainbow]

One of my friends has something on her bracelet about having multiple life-threatening allergies to meds and something like "SEE WALLET CARD BEFORE ADMINISTERING ANYTHING". She's very careful to *never* (except at home) be without her wallet, and even at home she keeps her purse easily visible in case an ambulance is required and she can't speak.

The wallet card gives the basic urgent info so they have it faster than calling medilert.

[kaberett]

I know of other people doing this.