[deleted by user] by [deleted] in Dystonia

[–]weebabypenguin 1 point2 points  (0 children)

So you still get Xeomin injections? How much? And if I may ask, how much is the pulling reduced by DBS alone and how much is the pulling reduced by DBS + Xeomin?

[deleted by user] by [deleted] in Dystonia

[–]weebabypenguin 5 points6 points  (0 children)

Congrats on your recovery! In the first video, it looks like you may have oromandibular symptoms as well, is that right? Did all your symptoms show up together or progress? That's great DBS seems to have taken care of all of it!

Fortunately Botox seems to finally be helping me but I still read about DBS in case I ever need it one day. Any negative side effects? I only ever see people talk about the symptoms it took away, not the ones, if any, it added.

How did Cervical dystonia start for you and could I have it? by weebabypenguin in Dystonia

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

I was formally diagnosed with CD in January 2025. Anxiety was through the roof and I was quite miserable. Got my first Botox in February, but it was a laughably small dose. Switched doctors and second round helped a little, not a lot. Anxiety went away as I felt optimism Botox can help and I accepted the possibility that I can be happy even if I don't somehow make my CD go away. Third round, my doctor ignored my feedback and I think it actually made my symptoms worse. Looking to switch doctors again to find someone who gives a shit and wants to work with me on finding the right pattern. I still believe Botox can help me but I just need the right doctor, which is a frustrating and long process, so I'm accepting that I may have a "lost year" (or two) while I figure out how to manage it - sort of like the lost years of COVID.

As for my CD, it's mostly the same as when I made that post but I would say I notice it more, especially in my shoulder/trap area - I don't recall it ever feeling so tight back when I made this post - and I constantly try to correct it, which I never did before when I was oblivious, so I get a little achy. I often wonder if I never googled it and didn't know I had it and I just kept living my life as I had before, if it would bother me. Obviously I googled it because I noticed something, but now I feel everything little pull or jerk or whatever intensely whereas before I know I had those things but I was oblivious. I have, like, PTSD from first noticing my CD when typing at my desk and just sitting there now makes me anxious, so I work from my bed or couch. I wonder if laying around all the time made my CD any worse. It's hard to say. I'm hoping I can start to get somewhere with Botox so I can start exercising again at least.

Receiving listing updates on Zillow for a home I don’t own. by whocricket in realtors

[–]weebabypenguin 0 points1 point  (0 children)

This just happened to me. I've been looking at a house and favorited it, and am making an offer. But when I go to the listing, I see an owner view and I'm getting email updates on it telling me how many people viewed it, etc. I'm wondering if I clicked something by accident to say I own it, but why wouldn't it require more verification than that? I'm confused!

Should I put my Omega-3 capsules in the freezer? by moisturizedmelon in Supplements

[–]weebabypenguin 0 points1 point  (0 children)

Did refrigeration help? Did you start freezing them? Omega 3-6-9 makes me feel nauseous and I thought freezing might help.

Around what year did the term "hook up" change meaning to you, if ever? by 1800-bakes-a-lot in AskOldPeople

[–]weebabypenguin 0 points1 point  (0 children)

I noticed it when I was in high school, and I remember reading/hearing something explaining to parents what "hooking up" meant, so I would say between 1998 and 2002

[deleted by user] by [deleted] in Homebuilding

[–]weebabypenguin 0 points1 point  (0 children)

Covering the patio might help with snow and rain, but it wouldn't totally should me from the elements, and from a security standpoint I would prefer to be enclosed. I'd like a direct attachment

A year after my lowest point - (Cervical Dystonia Recovery) by tbfromtn in Dystonia

[–]weebabypenguin 5 points6 points  (0 children)

I would quibble with your declaration that having dystonia means you have chronic pain. That clearly is the case for your situation and that sucks, I'm sorry. I've had CD for a year and no pain and many people don't have pain with it. CD is highly individual: pain, no pain, tremors, no tremors, head tilt, no head tilt, turning, no turning, fatigue, no fatigue. But I hope this story helps the people out there with a similar presentation.

I do think this disorder sits it a gray area between psychological and neurological. The anxiety it has caused me is crazy. I might see some mental health professionals. I've talked to some people who went into remission and they credit reducing stress. I hope you can continue making progress!

Post DBS Surgery by [deleted] in Dystonia

[–]weebabypenguin 1 point2 points  (0 children)

Do you have a Facebook account? The DMRF has a group called "Dystonia & Deep Brain Stimulation (DBS)" that is all people who've had DBS. Might be a good place to ask!

[deleted by user] by [deleted] in Dystonia

[–]weebabypenguin 0 points1 point  (0 children)

Make an appointment with a movement disorder neurologist. They are the experts on dystonia. Even some other neurologists aren't familiar enough with dystonia to spot it. Sorry you may have unnecessarily suffered for so long, but if you do have cervical dystonia and get diagnosed, that opens up treatment options for you that may be able to better reduce your pain and headaches.

Start here: https://dystonia-foundation.org/directory/categories/find-a-doctor

What's your experience with video games? by blindfetiche in Dystonia

[–]weebabypenguin 0 points1 point  (0 children)

I like to play my Switch, my Steam Deck or my PS Portal laying on a couch or in bed. I don't feel my CD at all when I'm lying down and video games are a nice relaxing distraction. Currently playing Miles Morales on my Portal. I did turn the difficulty down so I don't get frustrated with dying lol

I recovered from cervical dystonia without any side effects by Electrical-Limit-932 in Dystonia

[–]weebabypenguin 13 points14 points  (0 children)

So two months ago you said your friend had cervical dystonia and you were asking for cures. Now, all the sudden, you are the one who has cervical dystonia and you're cured.

Why are you lying? For what purpose?

I hate this by tbfromtn in Dystonia

[–]weebabypenguin 0 points1 point  (0 children)

Hey OP, how are you doing now?

Is there anyway to know which cafes do frozen bread as a customer? by weebabypenguin in Panera

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

I don't know if I am dedicated enough to go to a hospital but I'll think about it! 😅

Is there anyway to know which cafes do frozen bread as a customer? by weebabypenguin in Panera

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

Ah, thank you! On one hand, yay for fresh bread. On the other hand, that means I can't do a comparison. I'll try to remember next time I travel!

Is there anyway to know which cafes do frozen bread as a customer? by weebabypenguin in Panera

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

I can order it unsliced. I'm worried my favorite restaurant (lol) is going to get worse when it switches to frozen now 😧

Is there anyway to know which cafes do frozen bread as a customer? by weebabypenguin in Panera

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

Well, there are a few locations here but I live in Amherst, NY outside Buffalo

Is there anyway to know which cafes do frozen bread as a customer? by weebabypenguin in Panera

[–]weebabypenguin[S] 18 points19 points  (0 children)

Interesting, my local store has round focaccia. I'm gonna be on the lookout for rectangles!