Please, Please help! Polydrugged, currently have akathisia and only sleep 4 hour

I was rapidly tapered off of mirtazipine last spring (2022) and developed chronic insomnia.  Thought it was from being postmenopausal.  Got on HRT (progesterone  and estrogen) that did not help with insomnia.  Next, was given ambien and seroquel for the chronic insomnia.  Began tapering off of seroquel once I developed akathisia and was eventually CT'd by my neurologist because I developed tardive dystonias (rapid eye blinking, nose twitching).

 

I am miserable.  Have constant body spasms, twitches,  and have developed generalized dystonia (mouth puckering, jaw opening and swinging, etc.)  Constant head/eye pain.  Unable to walk at times.  Have lost 30 pounds.  Feel hopeless, severely depressed. Still have akathisia.

 

Here are the meds I am currently taking:  40 mg propanolol, 100 mg spironolactone, 100 mg progesterone, .05 estrodial, patch 9.23 mg of Ambien (started tapering).

 

I don't even know what to do.  I am in seroquel withdrawal.  Should I give my body time to heal or continue on with tapering these meds?

 

Should I continue the ambien taper and crossover to diazepam per the Ashton Manuel? 

 

 

Oh my goodness, I’m so very sorry for what you’re going through. 

 

Our general advice is to taper only one medication at a time and to start from a place of stability but I can see how this advice is like a sentence for you. 

 

I’m not a fan of crossing over to diazepam for Ambien, true benzo’s scare me much more than z-drugs. That’s because my Ambien cold turkey recovery lasted a couple of weeks at most and that was just insomnia, not horrific symptoms, Klonopin was a entirely different story.

Thanks for all of your advice.  I really need someone to help.  I feel so alone and desperate.  My akathisia is awful. 

 

I have taken klonopin for 3 nights.  It has not given me any relief as far as movements or the akathisia, so I don't see any benefit for continuing to take it.  Is it too late for me to just stop? 

 

How long did you taper ambien? 

Where did the Clonazepam come from and have you taken and stopped it before now?

 

I didn’t taper the Ambien, I quit cold turkey.

No, this is the first time I have taken K.  It was prescribed by my neurologist for my movement (generalized dystonia) .  I have only taken a couple of 5 mg diazapam in the past couple of months. 

When was the last time you took diazepam and how many mgs.  Are you still taking Ambien?

 

I know you’re desperate but your brain is craving consistency so lets figure out what you’re going to do and stick with a plan so you can find some stability, okay? 

 

Please let us know how many mgs of Klonopin you’ve taken but just so you know, it can take awhile for the drug to build up to therapeutic levels. 

 

I’m now wondering if you’d be better off taking a steady dose of Klonopin to see if you can stop the movement disorders, plus I’m concerned about your weight loss.  I know this goes against what I wrote earlier but I hate to see you suffering so much. 

Thanks for your responses and concern.  I am so lost and scared. 

 

Yes, still taking ambien.  I originally was taking 10 mg, but  I was in the process of tapering off the ambien.  I was going super slow.  My average weight pill was around 123 grams.  I was shaving it down and got to about 114.    So, not even down to 9 mg. 

 

I've only taken 2 diazepam. (5 mg)  They were given to me after I was poorly advised to CT 35 mg. of seroquel.  I refused to take the diazapam because I knew the dangers of benzos.  Unfortunately, I took one on Christmas Eve and I took one last week because I was in so much pain and having so much movement (muscle spasms...very much parkinson's). rapid jerking of whole body. I've been through hell.

 

Got a new neurologist this week who diagnosed me with generalized dystonia and he is now wanting me to take .5 mg k.  I've only taken it 3 nights and honestly have not seen any difference in my movement.  I did reduce the ambien to 7.5 those nights.  So the past 3 nights. 7.5 ambien and .5 klonopin.

 

I hope all of this makes sense.

Thank you, I understand what you’ve written. Is your new doctor aware the medication caused your condition?

 

I know very little about the disorders you have due to the medications you’ve been prescribed but I’m aware of at least one member who shares some of the medications and conditions you’re facing.  I’m out of my depth here and I’m worried that what I say will be in conflict with your doctors and given my inexperience and lack of knowledge, I’m hesitant to offer anymore suggestions. 

 

I’m not abandoning you but I do need to be careful because your situation is serious and I’m not sure what the best course of action is.

 

Edit: typo

 

How long has it been since you CTd? How long were you taking the Seroquel to begin with?

I only took the seroquel for 4 months total (2 of those months I was attempting to taper).  My highest dose was 100 mg.

 

I CT'd on Nov. 1 2022.

just reaching out to let you know something, diazepam is a benzo, klonopin is a benzo, zolpidem is pretty much a benzo, so your doctor is just prescribing you different benzos which in case act on the same receptors causing the same kind of imbalance, it's like giving alcohol to quit alcohol,  what he will prescibe now, dormonid another hypnotic similar to zolpidem or xanax which is another benzo ? this is nothing new tho, it's the same thing with most neurologists and psychiatrists,

 

 

those hormones play a role in gabaergic transmission and receptors, there is a progesterone group support in the support groups or other medications board,

Thanks for your info.  My doctor prescribed KLONOPIN because I have generalized dystonia.  I believe he thinks it will help with the movements.  Do you know if there is a group with those of us with Dystonia? 

 

Yes, I agree, I am now on 2 different benzos. I am in a mess and need support in a major way. 

 

My family hates to see me suffering so much and believes more drugs are the answer.

 

I am going to see if there is anyone on this site with generalized KLONOPIN.

How are you doing now?

Thanks for checking in.  I started having serious whole body myoclonic jerks and my cervical dystonia was getting severe.  My head would jerk to the side and stay locked in position.  Because of all of these serious involuntary muscle movements, I was put on Klonopin.  I DID NOT want to go on a benzo, but had a feeling this would happen in order to successfully taper the ambien anyway.  The good news.....my akathisia went away once I started the klonopin, so that has been a much needed relief.  I had akathisia for 6 months.  It is the worst torture on the face of the earth.  I know I am kicking the can down the road and there is a possibility that I will reach tolerance on the K, but for now it is relieving some of my symptoms and I am getting a little more sleep...not much. 

 

 

How are you doing?

Your situation is rough, but not unfixeble. You cold turkeyed seroquel and I would not taper any more drugs at the moment if I were you. But its though, are you having any adverce effets from the benzo? If not, I wouldnt taper any more drugs at the moment. Give your brain some time to heal. I had the dystonia from a too rapid taper from an antipsychotic. But its gone now. There is hope. I think we need more people to voice there opinion on this topic. As it is abit complicated. All the best to you.

LemonSoda,

 

How did you treat it? How quick was your taper? I am currently tapering Seroquel at 28mg. It has given me akathisia and I had a distonic episode on it.

I have the same symptoms but I have them from zopiclone so it’s not related to another drug for me…

I habe tardive dystonia and akathasia worsened by reinstating from only a z drug