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

[green_knight]

Sending an extra dose of hugs your way - that sounds scary, and I hope you find a way to deal with it soon.
Are there any local schemes for bracelets to warn people of your seizures? A friend of mine in the UK finds such aids make it easier for her to communicate her needs on days/in situations where words and long explanations that take too much spoons.

[untonuggan]

I keep meaning to get a medalert bracelet but have no clue what to put on it because there is so much med stuff. But yes, good idea. At least a seizure one.

[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.

[rainbow]

HUGE hugs!

i don't know if just names will be helpful for you, but i have a list in my email of weird siezures. I know they're all non-epileptic and they're all physiological, not psychogenic. (i always mean to read up on them, but...lack of sppons...)

non-epileptic myoclonus
non-toxic organic hallucinosis
paroxysmal endocrine disturbances
paroxysmal acute neurological insults
paroxysmal movement disorders
paroxysmal toxic phenomena
sleep disorders
syncope
transient ischemic attacks

for me the biggest tip was to avoid the things i knew triggered them and if i felt them coming on, get horizontal immediately (not just sit, but be prone) because sometimes that would help avoid them.

[spiralsheep]

Syncope is basically fainting, which sounds unlike L's symptoms. I only mention this cos then it's one less thing to google.

[untonuggan]

♥

[chalcopyrite]

::big hugs::

[untonuggan]

**hugs**

[sine_nomine]

My ex, who has non-epilepsy seizures, has had great success at Johns Hopkins. They gave her a diagnosis they (the hospital) didn't entirely have full confidence in and so ended up sending her to the National Institutes of Health.

I will check with her, if you'd like, about whom she sees at Hopkins and also if she'd be willing to talk to you. Your seizure frequency is WAY higher than hers so perhaps no overlap in diagnosis but maybe the doc referral would be helpful?

*offers many hugs and support*

[untonuggan]

That would be IMMENSELY helpful yes.

*huuuuugs*

[sine_nomine]

Have texted her to ask for info. Will keep you posted. I hope she can help out!!

[indywind]

got nothing but ::sympathy::

[untonuggan]

*hugs*

[altamira16]

Oh, you could get a service dog or a service pony or a service pig.

[pretty_panther]

*cuddlecuddlecuddle*

[brigid]

I've got nothing helpful other than sympathy and support, BUT, I really love and respect the way you outline what is and isn't helpful here. I know it's more work for you but YAY for communication and boundaries. I'm super glad that you feel comfortable laying out what you do not want to hear. GO YOU.

[shanaqui]

Love and good thoughts and hugs. ♥

This is not anything my mother has much experience with, or I'd offer to try to extract info from her, but I don't think she'll be of help. Still, I'll poke her to see if she knows of any good resources: they'd probably be UK-centric, but there might be something useful...

I will spare you the speculation that just cropped up in my head because a) I'm not a doctor and b) not helpful right now. I will come back if I can find anything confirming it or whenever total speculation may be useful to you and welcome! Because of my memory issues (thank you Lyrica), you might have to poke me for it...

[ofearthandstars]

I know very little about seizure disorders but I want to wish you good health and hugs and warm tea and snuggly things and moments without seizures.

Also, for service dogs, maybe check out these?
https://www.pawswithacause.org/what-we-do/seizure-dogs
http://www.petpartners.org/Service_Animal_Basics (there is some good info here).

*hugs*
♥

[gwaihiril]

Sending good thoughts and hugs your way!

[st_aurafina]

Sending good thoughts!

I work with someone who has absence seizures as part of juvenile epilepsy (though she's eighteen now) and flashing lights are a trigger for her, too. She says that the television can trigger her if the room is poorly lit, so she always makes sure the lights are up. Not sure if this is helpful, but hoping it might count towards more information/coping tips. Apologies if it doesn't.

*so many hugs* Take care.

[kaberett]

Many good thoughts for you.