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Anybody have experience with seizures?

Posted 3 Months ago by Tek Shmansen

I had one Monday morning. First ever. No idea what caused it. I'm waiting to hear back about my labs and then see if imaging is necessary.

Any tips on making my back (muscle strain etc) or tongue (chompchomp) hurt less?

There are 31 Replies


My experience with seizures is all second-hand.
Maybe five or ten times?
Mostly a kind of combination shame+guilt over not realizing sooner what was happening,
followed by a combination bewilderment+frustration over not knowing much about what to do plus not even being able to do that much.

One time my brother and father — both medical doctors — were there and helped until emergency paramedics arrived.
They got something safe between his teeth and something else safe under his head and found his prescription.
They weren’t able to test whether he had a “therapeutic level” of his meds in his system.
When he quit seizing he transitioned into natural sleep, which they said was the best thing for him.

All that leads me to consider the following advice; but I honestly have no confidence in it myself.
  • try not to be alone.
  • try to have your most frequent human companions trained in First Aid for seizures.
  • a companion dog who’s good at recognizing when a seizure is imminent and giving warning to those nearby would help whoever’s around.
  • wear a Medic-Alert bracelet or something like that
  • carry an information card in your wallet for ignorant strangers who want to help but don’t know about your dog or First Aid and need to know more than your Medic-Alert bracelet can tell them.

    There’s probably a local quango that can get you started on all that.
    I imagine the dog will be the most expensive and time-consuming item.

    .....

    I have taken several anti-seizure meds for years, but all for off-label purpose.
    I’m taking Depakote right now, for instance. It’s for a behavioral problem, not a seizure problem.

  • 3 Months ago
    chiarizio
     

    Acute seizures can apparently be caused by hypernatremia (high blood sodium), which is not hard to get in the winter due to drinking less water. Combine that with eating a bunch of salty food and it's not hard to get to the muscle twitching state. Maybe you were just very very dehydrated for some reason.

    3 Months ago
    Riven
     

    Thank you. I appreciate the insight, chiarizio. Who knows what the diagnosis will be. I think that'll dictate some of the life changes. My partners sure aren't letting me out of their sight rn lol (I'm so thankful and grateful).

    Xhin, that's what we're hoping for. Waiting for labs 🤞🏻

    3 Months ago
    Tek Shmansen
     

    My stepdad is in the hospital this week. He's been fainting regularly lately, which doctors have said has to do with low blood pressure, which was thought to be caused by heart medication which he didn't need anymore. But after getting off those meds, the fainting continued. On Sunday he had a fall which left a bad gash in his hand along with a dislocated finger, which he eventually went to the hospital for the next day.

    Anyway, when he was there, he had a seizure, which doctors said is due to very low blood sodium. Last night my mom told me that he's been having pretty bad alcohol withdrawal symptoms, though that's probably not what caused the seizure. Instead it's more likely the indirect result of drinking, smoking, and a bad case of covid-19 earlier this year which left him weaker, incontinent and with neuropathic issues. It's pretty upsetting.

    Any tips on making my back (muscle strain etc) or tongue (chompchomp) hurt less?

    What part of your back? And what do you mean by chompchomp?

    I've been dealing with lower back pain recently as the result of sitting in my chair all day, and already having anterior pelvic tilt which I've been trying to work out through exercises and better posture throughout the day. Also get some soreness in the upper back area, around the traps I suppose. I feel like that's more from an overly soft and cushiony bed.

    I got a foam roller for ten bucks on amazon though which feels great, and may give you some relief.

    3 Months ago
    Agis
     

    Anyway, when he was there, he had a seizure, which doctors said is due to very low blood sodium.


    Yeah both high blood sodium and low blood sodium can cause seizures (and also low calcium and low magnesium apparently). The first one seems more likely here.

    Last night my mom told me that he's been having pretty bad alcohol withdrawal symptoms, though that's probably not what caused the seizure


    Could be what caused the fainting though -- dysautonomia (aka spinal cord befuckery) can have a variety of bad effects.

    Any tips on making my back (muscle strain etc) hurt less?


    Yeah but you won't like it.

    tongue (chompchomp) hurt less?


    High-proof alcohol will numb it. You don't have to drink it, just swish it around like mouthwash.

    3 Months ago
    Riven
     

    Agis- mid-to-upper back. I think it has to do with what muscles I use and don't use on a regular.

    Oh and by "chomp" I meant I bit the crap out of my entire dumb tongue. Salt swishes are helping it heal more quickly so that's cool.


    Xhin- thanks boo. Yeah I thought about that but I am not going to put alcohol in my mouth by choice like eva (if I can help it). Jan 7 makes three years alcohol-free!

    3 Months ago
    Tek Shmansen
     

    Well in addition to the foam roller, here are some other things I saw recently on Amazon that could give you some relief:
    https://www.amazon.com/ProSource-Acupressure-Pillow-Relief-Relaxation/dp/B00N24PK6A/ref=sr_1_2?dchild=1&keywords=prosourcefit+acupressure+mat&qid=1609458127&s=sporting-goods&sr=1-2 https://www.amazon.com/Stretcher-Multi-Level-Massager-Herniated-Scoliosis/dp/B084WVMV5Q/ref=cm_cr_arp_d_product_top?ie=UTF8
    You could also put a tennis ball in a tube sock and put that between your back and a wall. Good for kneading out sore spots.

    3 Months ago
    Agis
     

    Did a variant on the tennis ball with a lacrosse ball, thank you. Taking it easy has been THE WORST. Like, I'm plenty lazy but I'm also the domestic in our house. Not being able to cook for everyone has been surprisingly frustrating.

    3 Months ago
    Tek Shmansen
     

    Sooo it turns out I have a lipoma in my brain. There's a 50% chance it's what caused my seizure. There's also a 50% chance it's what has caused my migraines, which I've had since I was 10. Oh and it's possibly a factor in anxiety and depression.

    So there's that...😬

    2 Months ago
    Tek Shmansen
     

    @Tek Shmansen:

    A lipoma is a fat-tumor, right?

    I know that if you’re going to have one, the brain is one of its favorite organs.

    Are they going to be able st treat it?

    Chemo- or radio-therapy, or surgery?

    Radiation therapy is especially difficult inside the skull.

    I hope things go OK for you!

    Let us know?

    1 Month ago
    chiarizio
     

    So I'm keeping Speck (I named the lipoma after PeeWee Herman's dog in the movie). It's non-lethal and deeeep in my brain. I just take anticonvulsants now. They're strong so I can't drive about 4 hours out of 24. The side effects of Keppra are not smol tbh.

    But yeah imma be ok, thank you

    1 Month ago
    Tek Shmansen
     

    And yeah it's a fatty tissue tumor made of brain material, in the corpus callosum. Probably been there forever. Probably caused seizure AND my migraines AND possibly my anxiety/dep

    1 Month ago
    Tek Shmansen
     

    Never dealt with it at all, but if you go see your doctor I'd mention this and see if they can give you medications and suggest anything else. Perhaps have a seizure bracelet or card in the wallet/purse/phone.

    NEVER EVER hold a person down having a seizure.

    1 Month ago
    Rika
     

    Why couldn’t God have just made us right in the first place?
    He has a really crappy quality-control department.

    1 Month ago
    chiarizio
     

    Rika- thank you, just today I caught my GP up on what my Neurologist found. I'm on Keppra until forever and it should help prevent a lot of future seizures. And here at home my partners know what to look for. My wife is a teacher and has been trained on seizures, etc. She really kept it together during my big one.

    One odd thing I learned: statistically if you get sleep seizures you ONLY get sleep seizures (the kind I now get). So that's cool, in a way. It means I should never just seize out in public. But it also means I can never tour again. Can't put a stage manager through finding me in a seizure the morning we've got to get up and drive to the next theatre, etx. Oh and my meds make it to where I can't drive for 2 hrs after takig them, and I take them twice a day.

    chiarizio- IKR

    1 Month ago
    Tek Shmansen
     

    My dentist’s hygienist has petit mal seizures.
    Her primary care physician has advised her to wait until she can get the J&J vaccine.
    They say one (both?) of the other two vaccines available in the USA sometimes has a bad side effect on people with seizure disorders, sometime resulting in grand mal seizures.

    ....

    Somewhat related, possibly; my daughter’s guardians are dragging their feet on getting her vaccinated because they want to find out about the side effects.
    She has never had a seizure disorder, and neither have any of her current co-clients, but this adult-foster-care agency has taken care of former housemates of hers who did have seizures; and it has always been their habit to never do anything for one client unless and until they could do it for every client.

    But in my opinion she has to have her first shot by June 28 in order to be sure she’ll be immune by Labor Day.
    First shot by March 22 to be immune by Memorial Day.

    I don’t know what’s reasonable.

    1 Month ago
    chiarizio
     

    That's got to be an incredibly difficult position for you, chiarizio. My heart goes out to you.

    My wife has Lupus and is a school teacher, so we decided the best bet for her overall health would be to get the vaccine asap. She IS measured along with her peers (release date wise) so she's getting it later than I'd hoped considering her autoimmune disease.

    Whatever we've got to do to keep her out of kidney failure and thus away from more chemo and steroids.

    And thank you a buttload: I wasn't aware of dangers to folx with seizure disorders.

    1 Month ago
    Tek Shmansen
     

    They’re letting dentists and veterinarians give the shots soon!
    ....
    I didn’t know that when I heard my dentist and his hygienist discussing her situation. In retrospect it explains part of the conversation.
    ....
    I asked the hygienist if her seizures only happened in her sleep and she said the opposite. For her they only happen when she’s awake. And the triggers seem to be stress.
    ...
    My sister had an MRI done for her migraines and has three problems no-one ever suspected, including an aneurysm as the most serious one.
    If something happens to her I’m in deep doodoo. Without her my inability to keep track of my own finances will come back to haunt me.
    ....
    I’m really sorry about your wife. I had a friend whose wife had lupus.
    Before her my only experience with lupus was results on chromatographs in the pathology lab I worked in.

    1 Month ago
    chiarizio
     

    I'm very fortunate. Sleep seizures are much easier to deal with from what I can tell, and I'm lucky enough to be part of a loving home with people who watch out for each other.

    I had another seizure day-before-yesterday...man my ass is STILL kicked. But we got me back to reality and I'm in the process of switching meds.

    As for my spouseketeer, I'm happy to say she's been in remission for years. Tryna keep her that way.

    1 Month ago
    Tek Shmansen
     

    Yes indeed I had them for several years of my life.

    1 Month ago
    tnu
     

    Gross. Glad it's past-tense.

    1 Month ago
    Tek Shmansen
     

    I'm finding that at least the med Keppra has strong effects on my emotions. Glad to be stepping down from it to another, carbamazepine.

    1 Month ago
    Tek Shmansen
     

    Any advice on meds? I'm also SHREDDING my tongue, so is appreciate advice about that too. I mean, I'm googling shit but yanevakno

    1 Month ago
    Tek Shmansen
     

    @Tek:
    My sister mentioned “a mandibular device” as an easier-to-tolerate-than-a-CPAP-machine way of handling obstructive sleep apnea.
    I never heard of it before and don’t know anything about it, but it stops your tongue from blocking your throat so it might help you in your situation as well.
    Or not. You’d need to look it up.

    Hope that helps?

    1 Month ago
    chiarizio
     

    Thank you! I've been looking up mouthguards as a mattro.

    1 Month ago
    Tek Shmansen
     

    @Tek Shmansen:
    You wrote:
    I've been looking up mouthguards as a mattro.

    What did you find out?

    3 Weeks ago
    chiarizio
     

    There's one in the works rn awaiting patent and all that comes with making a new product and new business. The proprietor/inventor experiences waking seizures and this device will primarily be for insertion during seizures (it's design bears in mind choking hazards, etc). I reached out to them and just received an email yesterday. Turns out a person should be able to wear these devices while sleeping!
    https://neurovicellc.com/

    3 Weeks ago
    Tek Shmansen
     

    I’m having a “relapse” of my sleep apnea. I’ll have to ask my sis about her “mandibular device”.

    3 Weeks ago
    chiarizio
     

    Oh chiarizio I used one of those sleep apnea machines for a few years. Such an odd thing to adjust to but once you adjust man they help you sleep well. After awhile it was just too powerful for me as I lost weight and my breathing got easier.

    3 Weeks ago
    Tek Shmansen
     

    I hope you can rectify it quickly and easily.

    3 Weeks ago
    Tek Shmansen
     

    @Tek: Thanks!
    My CPAP may need to be readjusted; whether because it has slipped as time has passed, or because my apnea has gotten worse.
    (I think the former is likelier than the latter, but that’s a layman’s opinion, and not to be relied upon.)

    Even now I sleep notably better with it than without it.

    3 Weeks ago
    chiarizio
     

    Reply to: Anybody have experience with seizures?

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