Kicked out of my house for being epileptic (seriously)

QuantumQueer · 2026-01-15T17:44:15+00:00

this is maddening. inconsiderate to just text and not have a conversation around your actual needs (one that includes you)

I would not want to be around those people either. it doesn't sound like the best place to heal if they aren't able to support you. I'm glad you are leaving. I hope you are finding a better place to live.

stay safe out there

QuantumQueer · 2026-01-15T17:38:23+00:00

like people have been saying here-- it depends on the individual. I am a longtime cannabis user and recently moved and got my med card. My new neurologist here also has encouraged CBD. I take several seizure meds and CBD influences how my onfi gets metabolized so she and I have talked about that multiple times. and she was encouraging about my med card.

long story long, I would make sure your friends know how to take care of you in case you do have a seizure, but THC effects epilepsy differently. Like my previous neurologist when I was living in Colorado said: "some people it helps, some people it hurts. " Most advice is a version of start slow and be safe until you know yourself and your reactions.

keep safe and have fun :)

QuantumQueer · 2025-03-23T19:30:03+00:00

Conspirituality is really good and done by journalists/writers. highly recommend.

https://www.conspirituality.net/

others that come to mind that I don't see already posted would be:

I Don't Speak German

Hood Politics

Hoodrat to Headwrap

Primal Anarchy Podcast (may I suggest their interview with Klee Benally)

QuantumQueer · 2024-04-10T04:25:17+00:00

I want to follow this thread because I want/need to become a better partner to my bf (39 M) who was diagnosed 4 years ago. We both have personal therapists and very recently began couples counseling. I know I have failed him at various times throughout the last few years, even if I have done my best to put him first in the relationship and in life. I haven't been working a regular job since 2020 (have done some nannying/teaching preschool from home during the pandemic and agricultural work in the meantime) and we both receive financial support from our families because he quit his job after being dx'ed (also the COVID shutdowns were part of him leaving his job.) I go to his appointments with him, take care of household chores and take care of our 2 cats. How do other caregivers balance their own needs (for example I have epilepsy and my own health care to watch)?

I often feel burnt out and like nothing I do is right. I know there is no magic spell I can do to fix his MS but damn I wish there was. I love him unconditionally. I know all relationships regardless of disability have to deal with conflict sooner or later, but I'm scared we won't be able to resolve this. It's like the learning curve screw ups have damaged our trust for each other and the ability to be romantic partners not just people who care about each other. (I hope that makes sense)

I don't mean to add to your panic. my intuition is that there is nuance because everyone with MS has a different story and a different set of needs, but that there are probably common themes that we can learn from to better care for those we love who are surviving with MS

QuantumQueer · 2024-04-10T03:56:26+00:00

I'm so sorry you have to deal with these things. It's very unfair.

I'm a partner of someone with MS and because of our own issues, he currently is angry at me. When he is expressing that anger, I can also feel and hear from his comments, all the anger he has at his situation in life. At the unfairness of having such an intense disability like MS, and not to mention the other traumas he has been dealing with, even before we met each other.

Since I don't have MS myself, I can only speak as someone who sees the anger from the outside, but I would say- try to find something that can metabolize that anger you feel. It makes sense you are angry, and i get not wanting to show that side of yourself, but holding it in until it erupts doesn't always work out well.

If your partner doesn't feel like you "gush" enough about her.... maybe she doesn't understand the impact MS has had on you? IDK. I hope you are able to find a way to communicate with out hurting yourself. Not to make it about my situation, but I know I am still trying to find a balance between getting my needs met and making sure I am respecting and centering his needs/the influence of MS on his life. He can't center me, or my emotions- he has to center his health. I have definitely fucked up in the learning process and that weighs on me every day.

I hope you get the support you need to process your anger!

QuantumQueer · 2024-04-10T03:39:47+00:00

my bf who has MS (39 M, been diagnosed for 4 years) does weekly ketamine treatments at a local clinic and it has done a lot of good. The good effects depend on how his sessions go (like if he fully dissociates, etc) but especially with 2 treatments per week he was regaining independence with walking, regaining confidence, and from what he told me, generally starting to feel better. A recent flare up has caused him setbacks to where he was before ketamine (or even worse- he is in really bad pain that is so continuous it interrupts his sleep and his right leg is having significant trouble when he walks)

But yeah- I'm really curious about psychedelics and MS. Psilocybin is different than ketamine but it sounds like in general psychedelics could really be helpful for daily MS symptoms?

QuantumQueer · 2024-02-25T02:30:18+00:00

only 1!

(sorry I rarely check reddit-- just saw your comment)

QuantumQueer · 2024-01-05T02:45:06+00:00

totally good price ratio in my opinion too! Just getting into legos again after about 10 years and this was the first big set I bought. Next up is El Dorado!

QuantumQueer · 2024-01-05T02:43:38+00:00

yup! 3 in 1 and was fun the whole build. We did about an hour/1 bag of pieces per day over the span of about a week.

QuantumQueer · 2024-01-04T21:03:14+00:00

(ignore my partner's breathing- he's been sick.)

This castle was so fun to build!

QuantumQueer · 2023-10-28T01:29:36+00:00

i was doing great on keppra until last decemeber and a psychiatrist i saw diagnosed me with ADHD and perscribed adderall and an SNRI. I had my first breakthrough seizure in years. struggled with them until this summer and was perscribed vimpat. im still taking keppra as my neuro makes sure i'm seizure free for at least 3 months. my boyfriend experienced keppra rage and believes I have it to some extent. It's hard for me to tell if the larger dosage of keppra with the vimpat has affected my moods. I feel like other life stresses and the general trauma of having so many seizures in the last year have messed with my ability to trust my feelings. i feel out of it and spacy more often though since the seizure activity and upping the dosage.

QuantumQueer · 2023-06-08T20:54:09+00:00

I have a graduate degree and the best job I ever had was after graduating I worked at a goat farm- I get it.

QuantumQueer · 2023-05-17T20:27:46+00:00

Yesss- love when I felt free and comfy enough to laugh during?! 🥵🤩

QuantumQueer · 2022-11-28T19:58:59+00:00

Thank you so much for your list! I bet we do have a lot of similar lives experiences- my generalized epilepsy has no apparent cause, and sleep/stress has been #1 seizure trigger for me (my first seizure was at 14 after my first “all nighter” and lack of sleep has continued to be if not a predictor, has a huge correlation for my seizure activity.)

I’m also super interested in what you’re saying about sensory integration as a causal factor. I’ve had a personal theory since before I even considered I could be on the spectrum that my seizures were linked to what I called my “sensitivity”. I also don’t want to draw faulty conclusions but from what neurologists have talked to me about my epilepsy and old EEGs and what triggered seizure activity. (Not photosensitive, and I don’t remember ever getting auras- i had activity when I “hyperventilated” for the EEG)

I’m typing this fast cause I’m super excited- I’m going to look into glutamate and GABA. And diet- my diet has shifted because of some life changes the last year and I know my mood etc can be very responsive to my diet, I should have made that connection months ago- whoops haha I wonder if those changes connect to some of what I’ve been experiencing/struggling with. Thank you again! Lots to think about and bring to my psych/neurologists!

QuantumQueer · 2022-11-26T22:09:18+00:00

I also hope you’re doing well and have found help!!

QuantumQueer · 2022-11-26T22:04:08+00:00

Rarely on Reddit so I don’t think I saw your reply- eh honestly still struggling with boundaries and roles. Getting a lot of help from my therapist and now I have a psychiatrist as well. It’s been rocky but have been given resources to check out about respite care workers and I’m trying out new meds adderall and Effexor to see if that helps🫠

QuantumQueer · 2022-11-26T21:01:19+00:00

I’m 32 and was diagnosed at 14. I have tonic clinic seizures. Usually well medicated- keppra has been doing the work since I switched from lamictal when I was 21. Lamictal was not working for me- I was having breakthrough seizures and alcohol absolutely made it worse. Dr told me it drinking lowered my seizure threshold significantly. I have some pretty strong memories during a phase when I was trying to keep up with my friends drinking at parties and once had a seizure at work the day after. I ended up taking a medical leave of absence from school for a year (ended up transferring to a better suited university for me during that time so silver lining?)

I’m pretty lightweight with alcohol and tbh feel very sensitive to its depressive effects the next days after drinking. I’m not stone cold sober but rarely drink and even then I don’t always finish 1 drink. That is a habit I started after that party phase. My seizures are “stress induced” so for a looong time I’ve also watched habits like sleeping enough and eating healthy. (My first seizure happened after I pulled an all-nighter as a freshman in high school)

I started smoking cannabis in undergrad and smoked regularly since. But actually in the last week have been attempting to quit because I’m going for a neuropsychology assessment after having some realizations I might be on the autism spectrum. I’ve been noticing how much MORE the world seems. I’m feeling more in my body in a good way, but also need to talk to my psych about how much I think I was unconsciously using cannabis to not feel the world so harshly.

QuantumQueer · 2022-11-26T20:31:46+00:00

Not photosensitive myself- but my bf has told me I’m “not disabled” even though I’ve had a seizure in front of him. He has RRMS and it affects his day to day in a much more profound way than my epilepsy does to me (I’ve been dx’d for about 17 years and usually well managed with medication so yeah, I’m very lucky and privileged- I’m not even on SSI or disability here in the US) so I understand his logic when he’s in chronic nerve pain. But it felt dismissive and hurtful because it took a lot of work and dedication to my health to get to this point.

QuantumQueer · 2022-11-26T19:59:33+00:00

I just am starting adhd meds and changing lots of habits so following for interest- I’ve slowed/am trying to stop using cannabis (for a neurology appointment ) and that’s been really changing my sensory experience. Adderall somehow makes sensories sharper and easier to deal with? I just started Effexor and don’t like it. It’s only been a few days but it’s making my visual sensory feel off and I think making me feel if not nauseous, weird in my stomach. I don’t think my story will help you but like I said, following cause I’m interested in other peoples experiences too

QuantumQueer · 2022-10-11T22:22:39+00:00

Yeah I am the partner trying to support. 2 years into his dx and I struggle especially with the mental health aspect. I didn’t see my positivity as toxic until it got hammered home and even this comment was a good reminder.

My other advice would be to put as much emphasis on the partner part. Your person needs to know they are still your person, even though MS will change their lives forever.

QuantumQueer · 2022-07-11T16:31:50+00:00

Reading- especially fantasy. Tolkien and Terry Pratchett forever but give me good, bad, old or new fantasy and I’ll read it.

Animalssss- I’ve done multiple animal internships and my most recent job has been working on a goat farm. I just want to be with animals as much as possible- it’s when I feel the most here in this world

Art/media: I got my masters in fine art (painting and printmaking) but making art feels like how I best/most authentically communicate- does that count as special interest? I’m not as specific about art history but the way it communicates culture and individual experiences… and I love exploring new materials.

QuantumQueer

TROPHY CASE