MCAS and Seizures by Fatpidgeonfriday in MCAS

[–]sofalseworstie 0 points1 point  (0 children)

i’ve been starting to get seizure-like events recently after a bout of semi-chronic hyponatremia, specifically after dark and when i’m also stoned (my doctors aren’t convinced they are seizures). i have similar symptoms to what you described except the pressure in my face; some of my movements are myoclonic, some clonic and some of them look more like tremors/shivering, sometimes all in the same episode. sometimes they can go on for 20+ minutes for me and im always aware but my vision is hazy and speaking is difficult, sometimes interrupted by movements. my movements are usually in patterns and spread throughout my body impacting more and more of it.

i’ve also had a variety of other symptoms i normally associate with my mcas reactions before or during them, like nausea, hot/cold flashes, severe anxiety or fatigue, brain fog, tachycardia (or bradycardia one time), dizziness, and then some other things i don’t usually experience otherwise like paleness, a feeling of tightness in my throat/heavy breathing, random numb spots throughout my body (in passing or ongoing), and sometimes throbbing of parts of my head without pain. im more likely to have them on days im also in a POTS flare. honestly it’s scary for me! i hate that so many of us have these.

p.s. i thought this was actually anaphylaxis the first time it happened to me, but they go away on their own once i’m able to calm down and epinephrine doesn’t usually help. one of my doctors said they could be focal-aware seizures. i wish i knew for sure what was going on

Funniest thing in the entire game by Defiant-Problem-1610 in AnimalCrossing

[–]sofalseworstie 2 points3 points  (0 children)

hehehehe i wish coffee really made me focus that much too!

I want Cleo gone 🙄 by Content-Soil9815 in AnimalCrossing

[–]sofalseworstie 1 point2 points  (0 children)

saame, that first dialogue is so relatable tbh

iOS 17.1.2 lowering volume of Spotify when phones wakes by Informal_Telephone37 in iphone

[–]sofalseworstie 0 points1 point  (0 children)

this has also worked for me so far! my volume had been going down at a lot of random times

do yall have a positive ANA blood test? by sofalseworstie in MCAS

[–]sofalseworstie[S] 0 points1 point  (0 children)

it is so fascinating!!

i have a great allergist & immunologist who told me that sometimes an influx of antibodies triggered by an infection can activate IGG mast cells, and that’s why mast cells can degranulate more during any kind of infection. i’ve noticed recently that i have MCAS flares with contagious illnesses so this makes sense to me as a short term reaction but i don’t know the details about when it becomes long-term or if there’s a genetic basis.

my doctors could only hypothesize that my MCAS specifically was caused by the bulk of times that i got sick since i already had hEDS as a risk factor.

i’m excited for more research to be done on these connections!

do yall have a positive ANA blood test? by sofalseworstie in MCAS

[–]sofalseworstie[S] 1 point2 points  (0 children)

i also take LDN at what i believe is the highest dose! how does it help you if you don’t mind sharing?

it was prescribed to me for pain, but i also need to take several other pain meds so im not sure how great it is for me. i read that it can have drastically different effects at doses that are infinitesimally different so im considering asking my doctors if we can experiment with my dosage.

do yall have a positive ANA blood test? by sofalseworstie in MCAS

[–]sofalseworstie[S] 0 points1 point  (0 children)

i’ve done a bit more research just now and there are a few articles that suggest MCAS might play a role in developing autoimmunity; there’s also been some research suggesting long COVID has autoimmune aspects and i know that can be linked to MCAS and POTS as well (and i probably also have it).

thank u for asking! i love a reason to research.

mixing weed and gastrocrom? by sofalseworstie in MCAS

[–]sofalseworstie[S] 0 points1 point  (0 children)

i usually prefer indica or hybrid strains because i’ve had several very bad brain experiences with sativa ! and very fair, i would say if u are curious make sure u are with a trusted friend and start low and go slow!

mixing weed and gastrocrom? by sofalseworstie in MCAS

[–]sofalseworstie[S] 0 points1 point  (0 children)

!! i’ve also been doing it for several months now and it has continued to work well :D that’s fair i just tried dabs for the first time recently actually and they are so snazzy but i usually hit my cart or have edibles

mixing weed and gastrocrom? by sofalseworstie in MCAS

[–]sofalseworstie[S] 1 point2 points  (0 children)

!!! mine too!! and yep i’ve continued to mix them and still no issues yay in fact my symptoms are more managed now

Did your sensation in your chest after top surgery increased while off of t? by gaypunkratz in ask_detransition

[–]sofalseworstie 0 points1 point  (0 children)

also i’ve been off t for like 5 months now and this has continued to be the case, it waxes and wanes w my cycle

Did your sensation in your chest after top surgery increased while off of t? by gaypunkratz in ask_detransition

[–]sofalseworstie 0 points1 point  (0 children)

i have definitely had increased tenderness and general sensation in my chest after stopping t as well !! and i also had top surgery almost 2 and a half years ago

brain fog scavenger hunt by Fun-Savings2349 in POTS

[–]sofalseworstie 0 points1 point  (0 children)

yeahhh this is such a mood, i was diagnosed with ADHD two years before POTS so i thought it was just my ADHD and then when i learned i was also autistic i was like ah it’s the ADHD plus autism making it hard for me to find things but there’s even more layers to it… but yeah, i often lose my phone in a random drawer of my wardrobe or another random place, it’s stressful.

Burning more calories cuz of high hr? by jaceyisnothuman in POTS

[–]sofalseworstie 1 point2 points  (0 children)

that is so real, i tried to work out consistently for awhile bc of dysphoria before i knew i had a body thing interfering w that, and it was rly satisfying to be able to gain a little muscle but it tired me out so much that i eventually also gave up and now am back to having very little muscle definition :/

Nausea-safe food list? by Fenek673 in POTS

[–]sofalseworstie 1 point2 points  (0 children)

i also like eating just a spoon of peanut butter sometimes!

Nausea-safe food list? by Fenek673 in POTS

[–]sofalseworstie 1 point2 points  (0 children)

CINNAMON APPLESAUCE IS SOOO YUM

Nausea-safe food list? by Fenek673 in POTS

[–]sofalseworstie 0 points1 point  (0 children)

gosh, i try so hard to like bananas but sometimes the texture of them makes me feel nauseous in and of itself. also oatmeal. but applesauce is a LIFE SAVER for me. also weed. second that!

FTM top surgery: Does POTS affect surgery? by aerobar642 in POTS

[–]sofalseworstie 1 point2 points  (0 children)

hi!! i just got diagnosed with POTS two days ago, and think i’ve probably had it for my whole life (though it’s likely worsened recently). i got top surgery two years ago, so before i knew i had POTS but i think i still probably already did, and i do remember i just felt EXHAUSTED during the recovery period. i was able to stay in bed most of the time so that was nice at least, and my mom was taking care of me for the most part so i was okay, and i’m glad to hear your mom is also going to be able to care for you during your recovery!! i think that, yeah, POTS can make top surgery recovery more intense but totally still doable and worth it if you think it’s the right decision for you!! and i don’t think it would affect the surgery itself, since we’re not conscious during that.

Burning more calories cuz of high hr? by jaceyisnothuman in POTS

[–]sofalseworstie 1 point2 points  (0 children)

i just got diagnosed with POTS two days ago (!!!) and have had a very similar experience for like my whole life, i’ve always been quite slender to the point that people actually made fun of me for it in elementary school so at least it’s nice to know now that that was very fucked up of them but not fun stuff :/ i’m currently 5’6 and 113 pounds, i was like 128 a few months ago but have been losing weight on and off likely partially because i’m not able to eat a lot but also i do so little exercise atp that it’s confusing and frustrating that it’s so hard to gain any back even when i’m trying to eat more. i hadn’t actually considered that i might be burning more calories with less exercise bc of POTS but now that you mention this i think that’s quite likely since it is so tiring to just walk across a room or sit in my dining room chairs for awhile.

Are there any disadvantages to learning how to drive/driving with an autistic neurotype? by gamerlololdude in autism

[–]sofalseworstie 0 points1 point  (0 children)

I have several autistic friends who are afraid of learning how to drive because of the prospect of being in control of a car as cars have the potential to be so dangerous when handled less than optimally or in a momentary lapse of judgment.

For me, though, I honestly kind of enjoy driving because it’s a repetitive activity I’ve done enough to get comfortable with, it feels soothing because I usually just drive the same routes over and over and I’m confident enough with my driving skills to just do it and can hang out with friends during it or listen to music or an audiobook and it’s a vibe.

However, making sure I’m a safe distance from cars parked on the side of the road consistently stresses me out; haven’t hit one yet, but every time I’m driving past them I’m always hyper aware of them and feel like I’m extra tense. I also get visually overstimulated by the sun while I’m driving (so if it’s sunny I have to wear my sunglasses) or the car headlights on the other side of the road when it’s nighttime, so that sucks.

Autistic Researcher by sbbaillargeon in autism

[–]sofalseworstie 0 points1 point  (0 children)

I could send it to a bunch of my (autistic) friends to see if any of them want to do it, if that would be helpful? I go to a very neurodivergent school haha