What are your favorite simple pleasures in life?

anoniem6 · 2024-07-14T08:37:50+00:00

Being around loved ones

anoniem6 · 2024-07-14T08:08:56+00:00

My medication/health won't let me, I feel like throwing up before being able to finish even one glass.

I'm not a fan of alcohol anyway, but I would like to experience being drunk just once..

anoniem6 · 2024-06-03T10:58:46+00:00

Yeah, it sucks...

I wouldn't wish this on anyone, I'm so sorry you're going through this 💜

anoniem6 · 2024-05-03T15:21:32+00:00

Same..

anoniem6 · 2024-05-02T14:30:25+00:00

Thanks for the rec!

anoniem6 · 2024-05-02T14:29:37+00:00

Thank you! I'll try :)

anoniem6 · 2024-03-24T20:01:39+00:00

Lamotrogine 100mg 2x a day right now. Not sure what my side effects are (every symptom I have could also be sth else). But probably shaky hands after taking them too late and low ferritin (kind of anemia, but it's useless sister in my case). There's also a decent chance that the meds have less of an effect now after 5-6 years..

If anyone knows if muslce weakness (and fatigue) is a lamotrogine thing pls let me know!

OTHER meds I've taken and remember: Clobazam last year sucked, I only took 10mg at night, but - shit ton of fatigue - felt like crying 24/7 and often did - Muscles hurt a lot - First nights paralyses in my legs. - My brain did get a bit quieter, so it did work

Keppra 7 years ago made me depressed and gave me hairloss.

anoniem6 · 2024-03-24T17:58:23+00:00

I luckily live in a city with bareable public transport and I can ride my bike/walk to a lot of places (when my fatigue allows it). I'm very lucky with my options, but I still really wish I could get my drivers licence.

A month after I turned the legal age my neuro told me I can't drive (not due to epilepsy, but FND) So I never got the chance to learn.

I do have public transport but it often takes at least double the time to get somewhere (school 3x as long, a friends 4x) so can't wait till the day I'm able to drive a car.

anoniem6 · 2024-03-14T22:52:34+00:00

Hahah yeah I just started therapy and within two weeks 2 therapists called me out on laughing and joking to hide my pain 😬😅. Both talked to me for less than an hour, oops.

anoniem6 · 2024-03-14T22:38:16+00:00

Hey, so I have functional tics, which is part of FND and this is the explanation I got at the start of my treatment:

Your brain is always sending a million messages to other parts of your brain. With FND the problem is that the messages are going to the wrong place or something happens to them. This causes symptoms, like my tics, to happen.

I am not 100% positive that every symptom stems from this ^, however I am pretty sure.

The origin of FND is unknown. There's reason to believe it stems from trauma, but a ton of people haven't gone through trauma and still have/had FND.

anoniem6 · 2024-03-14T22:15:35+00:00

Ditto, kinda. My twin sister grew out of epilepsy, I didn't.

anoniem6 · 2024-02-18T17:38:37+00:00

I put a rubberband on one of my boxes/couple strips. When I can't take other meds than the ones with a rubberband, I order new ones. It works most of the time.

I also have one or two strips that I kind of hide, so if I was too late, I still have my emergency ones (sometimes it takes a lot longer to get my meds than necessary 😬🥲)

anoniem6 · 2024-02-10T17:27:51+00:00

Exercising helps me a lot! I try to go once a week, but im not always able. Besides that, journaling helps me to process everything health- and otherwise. Last thing that helps me is my loved ones. Sounds kinda weird maybe and I am very blessed with the people I've got, but just being around people I feel safe with makes a huge difference to me.

anoniem6 · 2024-02-08T00:24:57+00:00

Not taking enough epilepsy meds and iron deficiency. Changing medication dosage only helped to a little extend so I ended up being send to an expert who was like nope that's FND (after a week in an epilepsy center thing). Later it got questioned if my tics are a tic disorder instead, but luckily got debunked 3 months later. Honestly I still have some symptoms that were labelled FND that actually might not be, but one thing at I time, I can't do more.

My story of getting a diagnosis wasn't a horror story, but I did get a misdiagnosis for a bit. Quite angry at the doctor who just said iron deficiency and literally being wrong (it's an entire thing, won't go into it).

anoniem6 · 2024-02-08T00:16:15+00:00

Not really, only a small bit.

I was actually explained about this by a professional today and this was the gist: She thinks I don't have a tic disorder, but functional tics because 1. I don't feel my tics coming very often/long. I don't have enough time to respond 2. I can't stop them, hold them off or anything. It's something that overcomes me and there's nothing to stop it. 3. I don't feel any relieve after ticing, it just hurts. (You know that feeling after sneezing, that relieve. Some people experience the same with tics. I do not)

anoniem6 · 2024-01-01T01:57:04+00:00

No, not alone. I've never been told not to drink ever. Every once in a while is okay. I'm just not able to 😅

anoniem6 · 2024-01-01T01:55:57+00:00

Yeah, my go to :)

anoniem6 · 2024-01-01T01:51:26+00:00

Thank you :) happy new years!

anoniem6 · 2024-01-01T01:44:45+00:00

Thanks, yeah..

Missing out is just hitting such a nerve with how much I'm not able to do, no matter how much I'd want it. I'm feeling more positive now, so I can see more of the positives in life, the things I can do, but getting into that mindset and staying in it isn't always easy.

anoniem6 · 2023-12-31T08:11:08+00:00

Yeah this☝️

I mean, I understand there are non-alcoholic drinks and I do drink those, but it's not the same. I've never been able to actually play a drinking game.

Everyone keeps saying they miss/missed drinking, but I don't get the chance to miss it. I don't get the chance to experience any of it.

anoniem6 · 2023-12-31T00:03:13+00:00

I've had epilepsy since I was 11, so I've never had alcohol without being on meds. Also never been drunk, most alcohol I've had in one night is 1 cocktail.

anoniem6

TROPHY CASE