The body twitchers group

I have something like that. It feels like I'm constantly vibrating, it's easy to notice that when I'm lying down. My head also seems to buzz and get something similar to a mild electric shock sometimes. These are my most annoying symptoms because I have them most of the time... I hope they'll go away with time!

Hi,

 

Any old buddies recovered from this symptom? Hearing how you are doing now will really help... this is one of my worst symptoms. I have eye twitching, fasciculations, jerks, twitches mostly while falling asleep. Awful. Please share how you are doing?

Anyone healed from this group?

Just recently, I've been getting twitches in my left arm/left eyelid. I think it's because I hurt a ligament in my ankle and can't do my daily 5 km run.

 

I'm thinking about beta-blockers which I used to take years ago to stop the shakes after drinking.

I have had the electric shock feelings the never being able to go to sleep or nap without that horrible feeling of surges going thru my body for days and months . I am thankful to say that this is gone . I am almost done my taper and if I move too fast I do get a reminder of it so I hold until it goes .

Lisa

Thank you Lisa, getting reassurance on these crazy symptoms really helps a lot.

Good luck with the rest of your taper.

I’m new to WD. About 5 days and I have twitching in my feet. I bought a weighted blanket to better sleep. Actually got four hours of sleep last night.

Hi TallGolfer,

 

It breaks my heart to see someone new here... I’m really sorry you are also going through this, no one should have to go through this. It’s been 6 months since I got off and I sleep 8-9 hours now. I wake up because of weird dreams or bathroom breaks but I can fall asleep again. I still sometimes have twitching when falling asleep, it’s awful, so during those days I either sleep up with lots of pillows or with no pillows at all. That’s what helps me fall asleep and stay asleep. I am now working from home because of covid. I took 3 months off work because of this and I started slowly working from home by doing 2 hours of work in March, 4 hours of work in April, and started full days in May. It helps to be doing this at home... the pressure in my head was a problem when I started working, it would get worse when I pushed too hard. For me, the first 3 months were the hardest, from what I’ve read on your profile, you could start feeling better sooner. Watch out for food sensitivities, monitor what you eat and how you feel afterwards. And also watch our for exercise sensitivity.. it can be brutal if you exercise.. Practicing acceptance is important. It takes time to heal, don’t try take shortcuts by taking new medications as those could make you worse and delay your healing. Be careful with supplements as well. Your CNS is very sensitive and can react to just about anything...

Thanks so much for your reply.  I will take your advise and not drink alcohol, not eat sugar or gluton and not take supplements.  The feet jerking come and go.  My legs feel heavy too.  Again, I going to fight this and not let the Benzo win.  I also know that healing will take time.

another twitcher checking in!

 

I started getting it in interdose dependence, isolated to a small area on my calf, now its whole body, was much much worse months 1-2 post jump. 2.5 months now and its slowly reducing, but i do have the odd bad day.

 

in a wave atm and absolutely terrified there is a more sinister cause, although rationally i 100% know it's the benzos, particularly because they jump around my whole body, and attack in packs when i am feeling particulary anxious haha.

 

massively releieved that its so common (hate that anyone has to deal with at all, but comforting to see how common it is)

Mac, it’s common and an awful symptom and will ease off with time.... Hang in there..

Checking in with this super frustrating and worrisome symptom.  My left shoulder has been twitching intermittently for 3-4 weeks now.  I also get other less frequent random twitches all over, especially my eyelids, but this shoulder has been the worst and doesn't seem to want to go away.

 

Of course, I'm worried it's something more serious than benzo withdrawal since I'm almost 5 months out.  ARGGGHHH!!!

 

Anyway, thanks for listening! 

Natbran, it really is frustrating and exhausting... I get these when falling asleep, needless to say when I get them I don't sleep much. They also come with the electric feelings on my arms and hands. I'm 6 months out so this is benzo related.... Hang in there...and I find a hot water bottle can help... Hopefully this symptom falls off for us....

Hello there.  I am in the midst of a struggle with twitching and health anxiety.  Jumped in June off .5 (took as many as 3 mgs before taper) clonazapam. I have had jerks every night for several weeks when trying to fall asleep and now I have twitches all over.  I cannot sleep and I am miserable.  I am concerned with ALS even though I have no other symptoms but twitches.  Conceptually I realize that this more than likely is benzo related, but I cannot get my mind to acknowledge it.  I am hurting and extremely scared. 

Hi Akbenzohelp, the jerks and the twitches are really the pits because they affect sleep and increase anxiety. Please be reassured that they are all because of benzo withdrawal and that with time they will get better and eventually stop. I’m 7 months off and still have them but they have gotten better and o can get some sleep. They get worse if I do something that revs me up, like eating the wrong foods or pills exercising and even taking some supplements has made them worse for a while. I did not have these before withdrawal. They are really awful and I’m sorry you are going through this, I promise it will get better. Sleeping upright helped me a bit, I even put cushions under my mattress to told the bed up. And I also use lots of pillows when I have a hard time falling asleep. Give it a few more months, hang in there and you can do this.

 

Does anyone have twitching on their face that doesn't stop for a second?

Hi Arnold, I had twitching in my face as well. It was very painful and debilitating. Thankfully it lasted not for too long and over time it slowly started to stop until one day it was gone... now the twitching is just in my body when falling asleep. I recently did a DNA test which shows I’m at high risk for Tardive Dyskinesia if given these medications. I don’t carry the Taq1A variant. Interesting that Tardive Dyskinesia is only caused by these drugs. We don’t just naturally develop it. So hang in there. It will get better... Staying off Gaba affecting medications from now on will ensure healing. These meds make the twitching come back or get stronger for me. I took gaba supplements and they made it worse when I stopped them. Slowly it will happen to get better for you as well. Stay strong.

Hi Arnold, I had twitching in my face as well. It was very painful and debilitating. Thankfully it lasted not for too long and over time it slowly started to stop until one day it was gone... now the twitching is just in my body when falling asleep. I recently did a DNA test which shows I’m at high risk for Tardive Dyskinesia if given these medications. I don’t carry the Taq1A variant. Interesting that Tardive Dyskinesia is only caused by these drugs. We don’t just naturally develop it. So hang in there. It will get better... Staying off Gaba affecting medications from now on will ensure healing. These meds make the twitching come back or get stronger for me. I took gaba supplements and they made it worse when I stopped them. Slowly it will happen to get better for you as well. Stay strong.

 

Thank you for your kind words, but I definitely feel that I am very badly damaged and it will not go anywhere, but it will only get worse. It seems to me continuous twitching, which I have had for the fifth month without the slightest interruption, associated with my spasmodic muscles. I have incredible spasticity all over my body, including my neck and face, which only gets worse. Now it affects my back and the muscles along the spine and my back curves, stretches back and to the right. The jaw is strongly stretched back, the neck muscles are stiff and shortened and I cannot even sit or lie down without suffering, my whole body is twisted and there are continuous very painful twitching and fluttering of nerves throughout all muscles, including my face. They write that tardive dystonia does not disappear after drug withdrawal and gradually progresses over 5 years, remaining for life. Only in very rare cases are remissions. I feel my body and I am sure that this will not go away.

Sensation of fluttering of nerves under the skin of the face, constant and continuous.

 

 

I’m sorry you are going through such pain. I was not as severe as you are but I would like to believe because my face twitching stopped, what you are experiencing will eventually settle and also stop. It may take a year or more but I would like to believe your body will try very hard to heal itself. I try not read what the literature says about certain conditions. They say chronic Tinnitus doesn’t stop online but there are so many ppl who had it for 1-5 years and one day it stopped. So what you read  must be taken with a pinch of salt. I know while suffering it’s difficult to even begin to imagine how the suffering will stop, but it will... Hang in there, give it time and be strong.

 

There are so many people here with muscle and nerve symptoms that do not improve at all in 3-5-7 and 10 years, but are getting worse ..

Trying2BHopeful,  If possible, could you describe what problems you had with your face? What were these pains like and was there spasticity?

Yes but you don’t know what other medications they are on and their circumstances. We aren’t all the same. Please try to be as neutral as possible about this. I can imagine it’s very difficult because you are suffering. As much as there are many ppl with twitching and muscle issues not recovering, there are others who did recover from twitching and muscle issues. You could fall on either side so don’t just think you fall in the “never recovering side”.

I'm not an alarmist. But, no one feels my body better than me. I have been stuck in a continuous agony between life and death for the fifth month. The injuries are such that they do not allow you to live or die. I was very badly damaged. Initially, I developed a tremor of the head and unbearable akathisia.

My akathisia was like in the most severe cases. Another burning sensation in the right leg. This is damage to the extrapyramidal system of the brain.

My brain was extremely vulnerable and I'm sure there was very serious neuronal damage.  On June 10th I had an MRI and took 3 capsules of pregabalin.

 

It doesn't hurt anyone, but my brain was so damaged that it was a disaster for him. Continuous convulsions, spasms and unbearable nervous pain began immediately, including the face. Since that time, the muscles have become stiff and shortened, they clenched and twisted. And the pain does not stop for a second and does not allow me to exist. These are very severe injuries that have not improved by 1 percent. I conclude that this is not a withdrawal syndrome, but a serious neurological damage with which it is simply impossible to exist.

I’m really sorry to hear what you are saying, and yes you know your body best... I really hope you get some sort of relief soon. Please hang in there and don’t give up.

I’m really sorry to hear what you are saying, and yes you know your body best... I really hope you get some sort of relief soon. Please hang in there and don’t give up.

Thank you!