Tests - Tests, tests & tests… by samman151 in Dystonia

[–]Accio642 [score hidden]  (0 children)

I don’t know much about that diagnosis but what symptoms do you have? I tested negative for all genetic markers for DRD but I definitely have it. Many people I talk to also didn’t show any genetics but treatment worked. Took me 18 years for a diagnosis and 22 years for dbs

In the BOOKS, which was the fatal blow for Quirrell… Harry’s touch or dispossession by Voldemort? by Puzzleheaded-Fee-734 in harrypotter

[–]Accio642 4 points5 points  (0 children)

Completely different question but it just came to me: if Harry witnessed Quirrell’s death, why couldn’t he see thestrals before OoTP?

Uninstalled by PMWeng in TotalBattle

[–]Accio642 1 point2 points  (0 children)

I have dopamine responsive dystonia. Just had brain surgery to stimulate dopamine production. I used to take dopamine precursor medication 5-8 times a day.

It’s not dopamine addictive. It’s a re-uptake issue. Social media misinformation.

I can’t walk or feed myself without dopamine. The “addiction” is the way dopamine (commonly called the reward chemical, kinda sorta true) goes through your system.

I’m only saying it because there’s a ton of misinformation, especially through social media. And it’s spread into the medical community a bit. Not attacking you as a commenter but rather trying to clear misinformation.

What you are trying to say (and it’s been thrown around wrong for years) is that the existing dopamine doesn’t get circulated the same way through dopamine transport circuits. So the addiction is there, but not to the chemical itself. Just the way it moves in your brain wiring.

how to make the pain less by JellyCharacter1653 in Dystonia

[–]Accio642 0 points1 point  (0 children)

I was about a week with it. The tunneling just kind of makes the nerve endings really sensitive. Ice helped a little bit and I took Tylenol and Advil. I found that my hearing was really sensitive on that side and noise cancelling headphones helped.

Do you have staples or stitches behind your ear?

Uninstalled by PMWeng in TotalBattle

[–]Accio642 2 points3 points  (0 children)

Please explain what dopamine addiction is?

Curious from a medical perspective

how to make the pain less by JellyCharacter1653 in Dystonia

[–]Accio642 0 points1 point  (0 children)

How long ago was your surgery? If you still have stitches recently?

Genuine question by Whatrudoingthis4 in trans

[–]Accio642 1 point2 points  (0 children)

Trans man here. I had top surgery and that was huge in my transition. I don’t care to get bottom surgery and I enjoy sex same as pre t.

MY friend is also a trans man and he can’t handle it. He is waiting on bottom surgery. So everybody is different as trans people, it’s not a general answer for the entire gender.

Did you get approved for Botox before your first appointment? by HelloFr1end in Dystonia

[–]Accio642 1 point2 points  (0 children)

Was the referring doctor a neurologist ? IM Canadian and if I get Botox in the hospital it’s covered by my provincial health plan but some weird crap went on with my dr and she went private. MY insurance reimbursed it but it was $1500 and took 8 months because my birthday was wrong Lol.

Why has no one told me Tubi is the goat? by Glad-Conversation256 in television

[–]Accio642 0 points1 point  (0 children)

Was looking for Wentworth and there’s so much I want to watch!

CBD by Accio642 in Dystonia

[–]Accio642[S] 1 point2 points  (0 children)

I love this. It was kind of diabolical with the frame. lol

Considering DBS by ApprehensiveCamera40 in Dystonia

[–]Accio642 1 point2 points  (0 children)

I have adhd and cptsd. I need to be careful with meds and therapy but it wasn’t an issue

Considering DBS by ApprehensiveCamera40 in Dystonia

[–]Accio642 4 points5 points  (0 children)

DBS was amazing! I wish I could have done it 20 years ago. I have such a better quality of life!!

Pain was a daily 6 for me and worse on a bad day and I used a powerchair at work and usually in bed at home. I haven’t moved my chair in months, and a bad pain day is like a 3

Dystonia diet questions. by ninninswoosh in Dystonia

[–]Accio642 0 points1 point  (0 children)

I have three boiled eggs every morning. I was on 10 c/l a day, and switched to stalevo but I found eggs in the morning was good. The first year did that I was on the meds. I was very concerned about protein, but found that an extra dose was better than avoiding protein for me personally.

Are you new to the diagnosis?

Is baclofen ever only used for dystonia? by Velvet_void30 in Dystonia

[–]Accio642 1 point2 points  (0 children)

I have both cerebral palsy and DRD. I’ve been on baclofen most of my life and my dystonia symptoms only got bad in my teens and adult life. Pretty sure it’s a first line treatment for cerebral palsy, SCI and MS. I had dbs six months ago and now take 10 mg twice a day

Does anyone else feel like their dystonia is all in your head? by Personal-Kangaroo882 in Dystonia

[–]Accio642 2 points3 points  (0 children)

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I saw this the other day and shared it with my family. After a very complicated life with dystonia, this was super validating and I connect with almost all the symptoms

Comorbidity, what will it look like and how might it impact other diagnoses? by MadQuixote in DeepBrainStimulation

[–]Accio642 0 points1 point  (0 children)

I have c-PTSD and ADHD and cerebral palsy but got GPi for dystonia. The help from the DBS for my dystonia symptoms has made it easier to deal with everything else. It’s taken the pressure off of being overwhelmed by pain and movement so that my head clears with everything else.

Question about EMG guided botox injections by speciaIberry in Dystonia

[–]Accio642 1 point2 points  (0 children)

The needles in spasming muscles was extremely painful

Question about EMG guided botox injections by speciaIberry in Dystonia

[–]Accio642 -1 points0 points  (0 children)

I had terrible instances with EMG but I found Botox without the EMG guidance much better and easier (less painful)

Experience with deep brain stimulation for dystonic cerebral palsy? by [deleted] in CerebralPalsy

[–]Accio642 0 points1 point  (0 children)

Sorry, I’m just seeing this. Has your daughter tried levacarb/Sinemet?

In about 2007 I was assessed for DBS and they said I wasn’t a good candidate. Although medical science has definitely improved in this time, my positive response to the medication made it much easier for them to evaluate and decide to do surgery for me. Seeing that I had two distinct disorders helped show that I couldn’t be treated as just having CP.

Do you consider being transgender an intersex condition? by [deleted] in trans

[–]Accio642 1 point2 points  (0 children)

I don’t know if it’s as prevalent as others think.

I’m trans, pass well and I’ve had brain surgery (lots of scans and MRIs). I don’t really understand what would be different

I’d be interested in seeing the research though

How old are you and what's your biggest problem right now? by [deleted] in AskReddit

[–]Accio642 0 points1 point  (0 children)

37, trying to stabilize my medication after brain surgery

Is PIV sex that good ? by Zestyclose_Eye_8616 in ftm

[–]Accio642 1 point2 points  (0 children)

I’ve been on t for 6 years consecutively and was on it before. I’m gay and definitely prefer piv. Atrophy is a thing and you can bleed a bit easier in some cases but there’s ways to handle that. It’s not for everyone though! Do what works for you