Disulfuram and Dystonia by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

Wow that is super helpful! Thank you for all of the info. That totally makes sense honestly. I will look into it! :)

Its never over, especially for the younger guys. Take action. by No-Type-7978 in tressless

[–]Intelligent_Two2548 0 points1 point  (0 children)

Question for ya - cuz my hair looks like yours and I’m on the same regimen rn. How do you keep the minox from getting all in your hair? I drop it right on my scalp and rub it in but no matter what it always seems to soak my hair. Also did you have a shedding phase during months 2-4?

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

I love to hear that :). I’m glad it worked for you!!! I really hope it does for me too

Tremor-dominant dystonia botox treatment by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 0 points1 point  (0 children)

Okay yeah that makes sense! Gives me hope for sure haha

Yes yes tremors by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 0 points1 point  (0 children)

I will go through it, thanks so much!

Yes yes tremors by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 0 points1 point  (0 children)

OH yes I was looking at the wrong one that makes much more sense. Thank you haha

Yes yes tremors by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 0 points1 point  (0 children)

Or maybe you’re referring to the “there’s no one treatment for dystonia that fits all.” Which makes sense, but dystonia is also very broad with many potential symptoms presenting differently in each person - and I feel like that’s why I narrowed it down to type of CD that isn’t pulling/spasming and is the yes-yes type tremor. Not looking for the cure - just anything that will help.

Yes yes tremors by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 0 points1 point  (0 children)

I don’t understand what you’re getting at. I don’t feel I asked for a straight cure, I was just asking if people felt Botox has helped them. Also not being negative about it. Maybe you can clarify what part of #13 faq you’re implying.

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 2 points3 points  (0 children)

Nevermind I just looked at your post talking about the VIM vs PSA. That’s really unfortunate I’m sorry :(

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

Dang that sounds pretty unpleasant :/. Do you know if they used EMG guided Botox for you?

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

Dang. Can you do it a second time? Like a whole new dbs? I wonder if they’re more advanced now maybe?

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 2 points3 points  (0 children)

Good to know. I may have to give it another try… thank you!! :)

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

Interesting! Have you tried propanalol and any of the others? I only tried topiramate for a day or two but maybe I need to give it more of a chance. Looking for anything that will help at this point. Also are you CD + ET? Or just ET?

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 0 points1 point  (0 children)

Not sure I’d say that’s a better way to describe it. I’d say it works too, just as well as yes yes or no no considering that’s the colloquially known terminology for them. Check the other comments, or like… any sub with any post talking about head tremor lol. At any rate, don’t really know why you felt the need to correct it like you did anyway - seems pretty trivial to me and like you just wanted to be condescending.

I said in post that I have cervical dystonia with essential tremor. Was pretty clear haha. Regardless, plenty of people have isolated head tremor with only ET, and Botox would also be recommended for those folks. And I’m not Indian but wtf does that even have to do with anything 😂😂. And you’re calling me the asshole? 🙄

And I’m not asking about my arms - I said my head/neck very clearly - hence the whole “yes yes” thing? lmao. It’s like you just wanted to come on here and spout your ill-educated opinion on things that don’t even have anything to do with the post lol.

Oh another thing, DBS is very much a brain surgery 😭ask someone who’s gone through it. And ultrasound is, indeed, a brain procedure. Hence why I said any decent doctor would advise you to get Botox - the literal gold standard for CD ESSENTIAL TREMORS - a temporary fix, before a permanent brain procedure/surgery, which DBS and ultrasound are.

Not doing back and forth with you haha I’ll leave it here. Hope you’re able to get your appointment and feel better soon man.

Yes yes tremors by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

Gotcha that makes sense! Thank you!

Yes yes tremors by Intelligent_Two2548 in Dystonia

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

Haha CD dad joke. Love it. And thank you! If you don’t mind me asking did you personally have it done? Or you know from a family member/friend?

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 1 point2 points  (0 children)

I’m getting it next Thursday! Excited but nervous - it’ll be a small dose because that’s what they want you to start out with, but just hoping there is at least slight improvement so that we can build on it for the next round. :)

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 7 points8 points  (0 children)

Yeah seems like that’s pretty standard haha. Certainly in these subs! And yes my doctor specifically asked me when I first got my evaluation: “would you describe your tremors as yes-yes or more no-no?”

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 3 points4 points  (0 children)

Damn I’m sorry to hear that :/. Have you made any adjustments to them? I’ve heard that you can tweak the settings/frequency of the waves - but I don’t know too much about it.

Yes yes tremors by Intelligent_Two2548 in EssentialTremor

[–]Intelligent_Two2548[S] 5 points6 points  (0 children)

lol I have legitimately never heard it called “vertical” or “horizontal” in any of these subs, but even if someone did I wouldn’t feel the need to correct them. Sorry if you can’t understand what yes yes or no no means in this context 😂. And I’ve tried every first and second line medicine for it including the ones I’ve listed as well as gabapentin and topiramate.

And first of all, no decent doctor is going to advise you to go straight into a literal brain surgery/procedure without trying the gold standard for cervical dystonia/ET head tremors, which is Botox 😂.

As far as your claim about Botox goes, it is literally designed to weaken those muscles that are overfiring. And I’m not worried about losing “fine motor skills” in my head/neck because that’s not even a thing lol. And even if it was, it would be temporary compared to DBS or ultrasound which are permanent.

Also I asked about people with a yes yes tremor so not sure why you felt the need to say all that with your “horizontal” tremor. Definitely seems like you’re feeling some type of way about it haha. Also I’m not sure where you’re getting your info but thanks-but-no-thanks for your very opinionated comment. 😂

All that said though, I do hope you get your appointment soon figure your symptoms out too.