Severe dystonia, need advice

[[ca...]]

Hi,

I'm suffering from severe dystonia affecting my neck caused by withdrawal and I'm really getting hopeless, I could use some support.

Here is my relevant history:

Been taking Xanax and valium for nearly 15 years on and off, was daily for a couple of years but last few have been sporadic only. September last year I took a large amount of Xanax (10mg or so) over the course of a few days and several days later felt withdrawal symptoms. Dystonia emerged at this point. It was mild to moderate at first, constant muscle spasms or pulling tilting my head, but I could fight it, and lying down it would go away. 

Unfortunately neither I nor my doctors connected it to the benzos at the time and I was prescribed clonazepam while I waited for Botox to treat it (diagnosed cervical dystonia).

The clonazepam helped a lot at first, on a high enough dose I was symptom free, but over several months and increasing and decreasing the dose my dystonia got much much worse to the point the spasms are extremely severe, can't fight them, lying down doesn't help, very painful, can't work, can't do much really, virtually disabled from this. I am still in this state.

 

By the time I realised it was 100% a symptom of benzo withdrawal, so much more damage had been done. I slowly tapered off the clonazepam, not wanting to do any more damage, and am now 2 months free of all benzos, but unfortunately I haven't seen any improvement at all since coming off. 

My neurologist has put me on carbamazepine, which hasn't helped after a month. I don't know what to do. I'm 38. I need to work to support my family. I'm contemplating going back on a low dose of clonazepam and hoping I still might recover while on it, but I'm so scared of benzos now.

 

Any advice very much appreciated. 

[[Pa...]]

Hello @[ca...], welcome to BenzoBuddies,

Oh my goodness, your situation is dire, you must be in so much pain and discomfort!  Can you tell us more about your clonazepam taper and did you taper from the Valium and Xanax?  Are your doctors in agreement with you that you are suffering from benzodiazepine induced symptoms or are they still looking for another culprit?

I'm doubtful a low dose of Clonazepam would work for you, many of our members have tried to go back on but they end up feeling worse and have to taper again.  

I know you're miserable but 2 months isn't very long in terms of benzodiazepine recovery, most long term users are looking at between 1 and 2 years.  I'm not saying symptoms are as intense as they are in the beginning but it takes an incredibly long time to recover from this experience.

Hopefully other members will stop by with their experience, I wish I had better news for you.

@[Pa...]

[[ca...]]

Thanks for your reply.

 

The clonazepam taper, I was on 1.5mg per day in February and reduced every 2 weeks or so, I finished my taper at the end of May. I had only been taking it daily since November.

When I was taking Xanax daily about 7 years ago, I did taper slowly replacing it with valium, I was taking one or the other daily for about 1.5 years.

Unfortunately I haven't really been able to convince my treating doctors that the dystonia is from benzos, some of them say that it is possible but I guess they don't really know how to treat it.

I've read stories of other people who've had dystonia from benzos, on this forum, on Reddit, and some case studies. And I know that most people do seem to recover after anywhere between 6 and 18 months. But nobody has suggested anything besides time that will help, and because my condition is so severe, that's why I'm asking for help in case anyone may know anything that could give me back some quality of life in the meantime.

 

Thanks again.

 

[[Pa...]]

Thanks for helping me understand your situation @[ca...], I'm thankful you recognize what is causing your pain and how long it may take for it to successfully resolve, I hope members who have struggled with this will drop by with suggestions.  In the meantime, you might use the search function to see what other members have had to say. 

[[fa...]]

Do you have neck movement with the dystonia?

[[ca...]]

Thank you @[Pa...]

 

@[fa...] yes, it's my neck that is affected. I have severe tilting to the left, moderate extension upwards, and mild rotation to the left.

[[or...]]

20 hours ago, [[c...] said:

Hi,

I'm suffering from severe dystonia affecting my neck caused by withdrawal and I'm really getting hopeless, I could use some support.

Here is my relevant history:

Been taking Xanax and valium for nearly 15 years on and off, was daily for a couple of years but last few have been sporadic only. September last year I took a large amount of Xanax (10mg or so) over the course of a few days and several days later felt withdrawal symptoms. Dystonia emerged at this point. It was mild to moderate at first, constant muscle spasms or pulling tilting my head, but I could fight it, and lying down it would go away. 

Unfortunately neither I nor my doctors connected it to the benzos at the time and I was prescribed clonazepam while I waited for Botox to treat it (diagnosed cervical dystonia).

The clonazepam helped a lot at first, on a high enough dose I was symptom free, but over several months and increasing and decreasing the dose my dystonia got much much worse to the point the spasms are extremely severe, can't fight them, lying down doesn't help, very painful, can't work, can't do much really, virtually disabled from this. I am still in this state.

By the time I realised it was 100% a symptom of benzo withdrawal, so much more damage had been done. I slowly tapered off the clonazepam, not wanting to do any more damage, and am now 2 months free of all benzos, but unfortunately I haven't seen any improvement at all since coming off. 

My neurologist has put me on carbamazepine, which hasn't helped after a month. I don't know what to do. I'm 38. I need to work to support my family. I'm contemplating going back on a low dose of clonazepam and hoping I still might recover while on it, but I'm so scared of benzos now.

Any advice very much appreciated. 

Your dystonia sounds exactly like what mine was, the reason they prescribed the clonazepam for me 35 years ago.  Today I feel it is so much better, just through the years, I was lucky.  Though I am still tapering, I have developed a pretty bad tremor in my head, but at least it doesn't hurt.

I have bone-spurs in my neck, I believe those are related to CD as well.  Sometimes if I slack off on moving my body, walking, and some floor exercises, and just sit too long, I get a bad neck ache I can't shake for hours.  I never get it at night, so I suspect it is really about spending too much time on my computer, or looking down at something I'm cooking/baking, or writing.  Lots of paperwork I have to do at times brings it on as well.

I learned some good stretches (some stretch and hold type) If you want to know what they are I'll post a video below.  I can attest to the fact they work, but maybe not right away.  Maybe getting about 3 times a day might help you, oregonlady

PS Mine was originally diagnosed as Spasmodic Torticolus, but since then, I've been told its the same thing CD. I know it hurts so bad I'll usually take tylenol, the pain is almost as bad as a migraine, for me

I couldn't find the simple one I found, but all I did was hold my head until I felt the stretch, and it hurt but not too much to hold it there a few seconds. I could use my hands to hold my head until it hurt a little but I knew I was just stretching the muscle.  I'll try and find something more for you

I like this guy, and he has a 2nd video with more easy exercises:

https://youtu.be/GIhxizM-ilU

 

 

 

[[Ct...]]

@[or...] You are so helpful and amazing with your resilience to adversity. You are an inspiration.

[[or...]]

27 minutes ago, [[C...] said:

@[or...] You are so helpful and amazing with your resilience to adversity. You are an inspiration.

I kind of chuckled when I read this you are so sweet CT but I got to tell you what I'm amazing about is how many things I have wrong with me haha so I can relate to quite a few things big hugs Denise

[[Si...]]

Not sure If I can help at this point seeing the 1st neurologist I saw might have miss diagnosed me with drug induced tardive dystonia from 2 time metoclopramide use. as my recent 2nd neurologist doesnt agree with that diagnoses and think it was more like a mouth clonus. the jury is out on what is actually the case on my end.

During the years I did learn some.
Hot and Cold techniques suppose to work with dystonia like compress and taking showers, massages. 
a good night sleep as well but that is a bit counterproductive to say. try to implement and practice good sleep hygiene. normally I would recommend a good absorbable magnesium supplement but they also work on the GABA-A which will give you set backs in benzo recovery. I did a supplement L-suntheanine whenever it became too much. which was one of the best things I could take sometimes. but I find it hard to advice that seeing someone in your position would want stability 1st over anything. but supplements does have a place compared to worse choices.   I would always check with people here first and listen to their experience before taking them. dont go frantic on the supps. 

Try to practice deep breathing. it has helped me go through the worst of neurological symptoms.

Good strong affirmations helps you with outlook. it doesnt fix it but it helps to be more strong and positive.  

[[Ad...]]

@capturemyrapture, I am so sorry you’re going through dystonia symptoms that are making your life so difficult. I was diagnosed with cervical dystonia 22 years ago and put on klonopin. But I’ve always suspected it began as a side effect of antidepressants. My PCP at the time was determined to put me on them and I didn’t know any better. By the time I stopped taking the ADs, I was already in tolerance withdrawal from the klonipin. So I’m saying this because I wonder if you’re on any SSRI antidepressant that could be causing the dystonia. They’re the ones most commonly prescribed these days. 
Good advice from @[Si...] about the suntheanine and hot and cold compresses, and from @[or...] on the exercises. I’ve also found that taking the amino acid DLPA helps calm down my neck, but only use it if I’m going somewhere that the head tremor will be embarrassing. I’m about 2/3 of the way through the taper and still hopeful the dystonia will eventually decrease. It’s definitely a painful condition, and I’m feeling your pain and sending you love and hugs and hope.

[[or...]]

2 hours ago, [[A...] said:

@capturemyrapture, I am so sorry you’re going through dystonia symptoms that are making your life so difficult. I was diagnosed with cervical dystonia 22 years ago and put on klonopin. But I’ve always suspected it began as a side effect of antidepressants. My PCP at the time was determined to put me on them and I didn’t know any better. By the time I stopped taking the ADs, I was already in tolerance withdrawal from the klonipin. So I’m saying this because I wonder if you’re on any SSRI antidepressant that could be causing the dystonia. They’re the ones most commonly prescribed these days. 
Good advice from @[Si...] about the suntheanine and hot and cold compresses, and from @[or...] on the exercises. I’ve also found that taking the amino acid DLPA helps calm down my neck, but only use it if I’m going somewhere that the head tremor will be embarrassing. I’m about 2/3 of the way through the taper and still hopeful the dystonia will eventually decrease. It’s definitely a painful condition, and I’m feeling your pain and sending you love and hugs and hope.

I forgot about your CD @[Ad...] or I would have flagged you for help on this thread.  Glad  you saw it as your experience w/ADs is worth looking into.  I tried a couple times years ago as my depression got so bad, but it wasn't bad enough to put up with how much worse I felt just after taking the darn things, literally, just a couple days.  Now I don't mention my depression to an MD because I don't want them pushing another med on me, plus writing notes in my med records that saying I refused to take them, but not "why" I refused them.

 

[[do...]]

I started on Valium for dystonia.  It’s so hard to live with.  But it can get better.  Now I am completely managed with Botox and chiropractic.  I see a neurologist who specializes in injections.  It took a while after withdrawal to stabilize.  I also take folate and magnesium which can help over time.  But stopping the contractions with Botox eventually stopped the anxiety about them and now I go out in public without thinking of it.  Please feel free to message me if you want support, I’m not on here much bc I’ve been off meds for 4 months and doing well

[[ca...]]

Thank you all for the kind words and suggestions. I'll take some time to look into all this.

[[or...]]

That's what helps me best when I have anything going on, is to read as much as I can, or listen to videos or others with the similar ailments.  Then it's a matter of what I'm willing to try, and weeding out things that can be harmful.  I don't plan to make my circumstances worse, but it's happened to me.

I've had pain/ache in my back which ramps up when I turn my head to the left.  I know my dystonia is still there, it's just so much better that my head doesn't pull to the left any longer.  I'm in a slow taper for 17 months now, and things can get worse at times, and sometimes, amazing windows when I know I am healing, and seeing a glimpse of how much better I'm going to be.  It's my hope, and it increases with every window

I've found just moving my body has healed pains and aches I have, all except one, and that is migraine pain.  That I have to take an otc, or worse case scenario, a beta blocker called Immitrex/Sumatriptan, but I get very few, they are super mild. 

@[ca...], you'll find your way, what works for you, oregonlady

PS I want to share about a man in a wheelchair at my gym day before yesterday.  Older man with some sort of MS maybe, but his head leaned to the left so I wondered. But he was doing stretches and a pulley machine and a lady was with him, helping him. You could see the muscles in his arms and I thought if he can do this, so can I. What an inspiration of someone that doesn't give up.  I for one needed to see that

[[...]]

@[or...] hi I was just reading your post here and you mentioned aches and pains for the last three days now I’ve been experiencing aches and pains my knees feet hands I’m over here thinking the worst can it be from the benzo? Hope your taper is going well and your feeling better