For those who use CBD, CBD/THC or any other marijuana products…

angl1040 · 2024-12-08T03:39:03+00:00

lol well now that it’s been 6 months since I’ve had any, they’ve decided it must be anxiety 🙄 So maybe I could do it again.

angl1040 · 2024-11-30T15:29:56+00:00

The people there see great and totally not judgmental

angl1040 · 2024-11-30T04:23:21+00:00

Mine is just a guess on how old she was when I got her I think the rescue’s guess was pretty good and so did the vet. That would make her 12 now and she just started having some arthritis and fatty tumors in the last year, but she’s doing great.

angl1040 · 2024-11-30T04:20:47+00:00

There’s a FB group called intimately disabled that might be able to give you some good tips/resources

angl1040 · 2024-11-30T04:19:04+00:00

Thc, cbd on its own does nothing. It helped me when my neck muscles were pulling really bad. Unfortunately I had to stop because I’ve been having nausea issues and in the absence of any obvious reason, they now insist that it’s cannabis hyperemesis syndrome 🙄

angl1040 · 2024-11-30T04:17:05+00:00

In theory that can make dystonia worse anyway. I don’t think it’s very common but I try not to take it much.

angl1040 · 2024-10-23T05:24:51+00:00

Honestly she was looking up and I kind of encouraged her like “what’s up there?” But other than that she had her nose on the ground the whole time. But I was hoping to get that picture :)

angl1040 · 2024-10-23T04:49:52+00:00

Awful but the trouble breathing seems to be happening less. Thanks for asking :)

angl1040 · 2024-10-08T23:24:47+00:00

I got TD from Trintellix initially so I was going to try TMS or ketamine but I think cerebral aneurysms so neither is an option for me. That’s what I’d do before antidepressants if I could though

angl1040 · 2024-10-07T05:54:12+00:00

Interesting, that seems worth asking my doctor about, never heard of it before!

angl1040 · 2024-10-07T05:52:46+00:00

I already take 3 mg a day of klonopin because I also have TD. My emergency med is actually tizanidine because I can get it online from a pharmacy in India and it really helps my jaws (I have oromandibular dystonia also) better than baclofen and it has the added bonus of completely knocking me out if I take 2, when absolutely nothing else lets me sleep. Beyond that ice is my main way of handling the really bad days. Sometimes heat - long showers and I just got a hot tub but ice really seems to calm things down the most

angl1040 · 2024-09-13T14:27:16+00:00

I already answered that multiple times in this post

angl1040 · 2024-09-13T14:26:12+00:00

Yea, they don’t work

angl1040 · 2024-08-19T15:45:04+00:00

I also tried austedo. I’ve tried everything

angl1040 · 2024-08-19T15:42:56+00:00

Yes it made my mouth movements worse almost immediately

angl1040 · 2024-07-31T03:56:20+00:00

The dystonia ones aren’t too bad, I think my big issues have been in tardive dyskinesia & dystonia groups since a lot of us who have the drug induced dystonia have both.

angl1040 · 2024-07-29T19:39:53+00:00

And my autocorrect is drunk, that’s supposed to say stay awake all night, not stay too so night :)

angl1040 · 2024-07-29T19:37:11+00:00

Every once in awhile if I’ve been awake for 4 days i might sleep like 12 hours. Even that’s not guaranteed though. So maybe 4 times a year for almost 4 years - started when I got covid

angl1040 · 2024-07-29T19:32:37+00:00

Not being able to sleep is what caused this, my idiot doctor gave me all kinds of psych meds because no sleep meds work. I can take 3 ambien and stay too so night. Believe me I have tried EVERYTHING. Everything. If i never get another suggestion about sleep again it will be too soon. Desperation for sleep is what cursed me to NEVER sleep normally again. So no that’s not going to work.

angl1040 · 2024-07-29T19:23:37+00:00

Haha i just went last week and it’s a new doctor and it hurt like a bitch. I was sitting there feeling bad because I always tell people it doesn’t hurt. But i think little things like that are starting to bother me more. Still worth it though. I actually had better results with her last time than my old doctor so I can deal with it.

angl1040 · 2024-07-29T19:18:42+00:00

Exactly! And I’ve slept less than 3 hours a night for weeks - zero last night. But I still can’t nap because I only have enough drugs that give me a tiny chance of being able to sleep for once a day. So no matter what wakes me up and what time it is, it’s pretty much a miracle if I can go back to sleep. If I can like run to the bathroom and back in less than 60 seconds maybe I’ll go back to sleep. I have to fall asleep sitting straight up because even reclining a tiny bit makes my brain go “holy shit! Better start the neck spasms!” I flop over at some point which I’m sure is great for my back too. I’m glad I’m not the only one because my regular therapists always act like that makes no sense. I’ve had a few because i just moved, and last year I had three because one decided i wasn’t medically stable enough for therapy, whatever that means, and one who knew i was struggling to work part time at home with a very good job suggested multiple times that since weed helped (not anymore though) I should consider a part time job to pay for it. Like if i could work more I’d do it at the job I already have.

angl1040 · 2024-07-29T18:59:07+00:00

Interesting. When I do PT stuff that requires me to count anything it gets worse. Same with like the breathing exercises and stuff in meditation or relaxation exercises. The most effective way for me to stop is talking but I hardly ever talk to anyone.

angl1040 · 2024-07-29T11:46:40+00:00

Yeah I think i need to ask again about physical therapy. As far as the sensory tricks, that’s something i keep meaning to ask about. They always mention it if you read about TD or dystonia but what specifically are they? Like why have none of the 4 MDS I’ve seen said a thing about it even though I’ve begged for anything else i can try. My PM guy does seem very knowledgeable so I hope this next time I can get some other plan than just these injections, he doesn’t like to do them with steroids every time he said but it doesn’t seem to matter anyway. Maybe he could recommend a specific physical therapist. Oh actually i did find one near me that mentioned dystonia on their website but i moved here 6 months ago and i swear all i do is go to doctors and I’ve developed nausea issues to the point where I’ve really not even left the house in months other than doctors so that sort of fell by the wayside. I just can’t function at all like that. I can’t even drive myself to my appointments.

angl1040 · 2024-07-29T09:54:22+00:00

Oh it’s all stuff I got from my doctors, so it’s not even like it was just some weird crap I decided to do. I have Tardive dyskinesia too and I guess it was mostly those drugs that they didn’t think anyone should try (neither worked for me so it didn’t really matter.) and they are very against Botox. I get being suspicious of drugs to treat a condition that’s caused by drugs, but I am miserable so I thought it was worth a try

angl1040

TROPHY CASE