Dystonia like symptoms before getting better?

[[Jo...]]

Hi, just want to know from the people that recovered did you have to go through dystonia like symptoms before getting better? And how did you deal with it? The reason I asking is because when I lift my arms it literally feels like someone is pulling them down. This is very frightening to me. Add on top that I have to go to work today it would be very weird if I am having trouble moving my legs and arms in front of my manager! And for him to keep asking me what’s wrong?

[[Le...]]

i did. could be almost any muscle and lots weird twitching and jerking. 

 

i never found a way to deal with it. massaging didnt work.

Edited May 3 by [Le...]

[[Jo...]]

Hey @[Le...], thank you for answering.  I checked your history you said that you  were taking 2mg of k and got off of it CT. I know that had to be grueling.😬 

I did dangerously fast tamper off of k and I am now 8 months out from my last dose. It feels like there is led inside my limbs and the trimmers are terrible. I am glad to hear that someone made it through these types of symptoms.

 

 

Edited May 3 by [Jo...]

[[Le...]]

wasnt easy. few suffer more from what i have read. really feel for those guys still experiencing some beyond year 2 and so traumatized they are hardly functional at all. 

i am luckier than some. 

[[Kr...]]

Dystonia is different from super heavy limbs, right?

it involves involuntary movements doesn’t it?

[[Le...]]

i think so. but can include any intermittent or short term disfunction like that i think. there is a lot of weird things going on a rarely the perfect word. 

[[Re...]]

On 03/05/2024 at 07:05, [[J...] said:

Hi, just want to know from the people that recovered did you have to go through dystonia like symptoms before getting better? And how did you deal with it? The reason I asking is because when I lift my arms it literally feels like someone is pulling them down. This is very frightening to me. Add on top that I have to go to work today it would be very weird if I am having trouble moving my legs and arms in front of my manager! And for him to keep asking me what’s wrong?

There is really no such thing as "dystonia-like symptoms" -- there is just dystonia. It is a cut-and-dry diagnosis. I had a dystonic episode. What you describe is not indicative of dystonia. Dystonia is uncontrollable muscle movements -- pulling, jerking contracting, swinging, twisting, a neck getting stuck in one position thrust back, etc. The sensation of heavy limbs is not uncommon and I would be careful how you label it. Just call it what it is. I know it is scary to experience. I hope you are feeling better now.

[[fa...]]

13 hours ago, [[R...] said:

There is really no such thing as "dystonia-like symptoms" -- there is just dystonia. It is a cut-and-dry diagnosis. I had a dystonic episode. What you describe is not indicative of dystonia. Dystonia is uncontrollable muscle movements -- pulling, jerking contracting, swinging, twisting, a neck getting stuck in one position thrust back, etc. The sensation of heavy limbs is not uncommon and I would be careful how you label it. Just call it what it is. I know it is scary to experience. I hope you are feeling better now.

Can dystonia just be contraction without movement?  

[[Re...]]

10 minutes ago, [[f...] said:

Can dystonia just be contraction without movement?  

I know during my episode I got stuck with my back arched but it wasn't for a long time and it was part of an overall storm of movements. I know someone who had their neck stuck for months in one position from benzo withdrawal.

[[fa...]]

6 minutes ago, [[R...] said:

I know during my episode I got stuck with my back arched but it wasn't for a long time and it was part of an overall storm of movements. I know someone who had their neck stuck for months in one position from benzo withdrawal.

I have intense muscle knots/contractions that keep coming back.  It limits the range of motion in my neck. I also can't sleep or function because of pain. But I don't get pulls.  My neurologist said my "head would be moving all around".  But I wasn't sure ifbthat could be true. 

 

Did yours get better? 

[[Re...]]

13 minutes ago, [[f...] said:

I have intense muscle knots/contractions that keep coming back.  It limits the range of motion in my neck. I also can't sleep or function because of pain. But I don't get pulls.  My neurologist said my "head would be moving all around".  But I wasn't sure ifbthat could be true. 

Did yours get better? 

What you are describing is muscle spasms and contractions, not dystonia. I have had plenty of those!

Did the episode resolve? Thankfully, yes.

My friend who had her neck stuck in one position also got better. She is an athlete again now participating fully in her life.

 

[[fa...]]

1 minute ago, [[R...] said:

What you are describing is muscle spasms and contractions, not dystonia. I have had plenty of those!

Did the episode resolve? Thankfully, yes.

My friend who had her neck stuck in one position also got better. She is an athlete again now participating fully in her life.

Thank you.  That is a relief to hear.  Have your spasms gone down? I've never experienced such pain.  I am not a weenie either. I have a high pain tolerance and this is about sending me over the edge. 

[[Re...]]

8 hours ago, [[f...] said:

Thank you.  That is a relief to hear.  Have your spasms gone down? I've never experienced such pain.  I am not a weenie either. I have a high pain tolerance and this is about sending me over the edge. 

I get it. I felt like my muscles were going to pop off my body and that I was being blown up with air for months. I still have slight facial spasms but they are not noticeable -- tongue and mouth area. I had such bad eye fluttering I couldn't close my eyes when I slept. So I have had some bad ones!

[[Wi...]]

I wonder if I have this. I have this intense pulling sensation at the back of my head and neck. When I try to relax my neck and head muscles it feels like someone is pulling my head back and my neck feels stiff like it's going to break.

[[Si...]]

On 18/05/2024 at 20:40, [[R...] said:

What you are describing is muscle spasms and contractions, not dystonia. I have had plenty of those!

Did the episode resolve? Thankfully, yes.

My friend who had her neck stuck in one position also got better. She is an athlete again now participating fully in her life.

2nd that. dystonia is unlike anything you've ever experienced its freighting as hell at first and well it will remain somewhat scary or unpleasant. its just horrible. 

In my case it was drug induced tardive dystonia caused by metoclopramide at first and later likely caused by benzo w/d with much lighter attacks. 
My episodes start with dancing replacement tension of the upper palate radiating downwards to my jaw, then rhythmically and uncontrollably my mouth goes open and closes.
The first year these attacks where really intense and frequent.  
also had some issues with the tongue curling up like a U shape but that was episodic for one week so far.  it feels so unnatural and really pulls my jaw down slowly but steady. not just the sensation of it. and then it goes back up. 

Anything like muscle tension, knots, stiffness, over flexible, spasms, short sudden jerks etc thank god and be glad those are all like stress related or related from GABA-A withdrawal. these things are very different in reality compared to reading them. if you read these symptoms they become more alike. While they are not!
So I hope this helps clarify some and put your mind at ease.

Heavy legs for example is so common symptom highly likely just normal w/d. what else? hmm sensations of pulling down or your position like you feel you are sitting to your left almost horizontally while you actually sit up right. all this stuff without the actual uncontrollable movements are just sensations usually messages being sent wrongly from the brain through the vagus nerve to the rest of your body.
common stuff in w/d in my opinion. 

Annoying though.

Edited June 10 by [Si...]

[[Si...]]

26 minutes ago, [[W...] said:

I wonder if I have this. I have this intense pulling sensation at the back of my head and neck. When I try to relax my neck and head muscles it feels like someone is pulling my head back and my neck feels stiff like it's going to break.

Have you tried hot and cold under the shower? massage your neck thoroughly, stimulate your vagus nerve at the neck, sit in the sun for a while and see if it helps, otherwise try to intervene with something small like green tea, a smoke(although usually not recommended) or L-theane supplement. 
or go for a bath or a swim really helps with the muscles as well.
Could do a salt bath but be careful if there is magnesium in it like epson salt/dead sea salt. as magnesium acts on GABA-A.

Overall if its just really bad muscle tension, knots dont go for supplements, just do the natural examples you'll be better off.