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Please help...Severe Muscle jerks, twitches, 24/7, profound insomnia for over a year, Klonopin


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Folks, it's been a year of hell where I was certain I would die from pain/insomnia etc. I cannot explain how my life has been ruined. I had a neck injury in Nov '22 and had a SLEW of meds for neck/nerve pain. These meds ruined my GI tract,n/v pain that I lost 18 lbs, down to 108lb female. I could not sleep AT ALL zero minutes, for stretches of 3-5 days, went to ER many times. Prior I have lived 53 years of strong healthy active life with no drug/alcohol use and avoid medication. Used to exercise 2x a day and never had a mental or anxiety issue etc. insomnia started after the injury and some type of GABA med has been rxd to help my sleep. Ativan, temazapam, konopin, depakote, gabapentin, ambien...etc. I never had sleep issues before this.

Nove '22-Jan 23: Neck injury and nerve pain to arm. Then numbness calf fasculations after a month of EXTREME insomnia and GERD and nerve pain. Unable sleep upright for GERD. Put on MANY meds, including ativan (went to ER after Cold turkey using .5 mg 11 days) felt extreme panic and fear.  They said impossible wd from low dose 11 days. many nights of zero sleep and panic starts with  Ppis and sleep meds

Jan-June: many months of 0-4 hours of broken sleep a night. Ambien getting my 3 hours max until it stops working. Then trazadone, THC, mirtazapine, amitrip, you name it....anything to try to get me down. Nothing works. I'm thinking I'm screwed I'm gonna die at this point. Taking everyone's advice that it's anxiety and try therapy other meds etc. Sleep deprivation has been the constant.

July get 1 mg klonopin. This gets me to sleep for the first time in months. 7 hours first night, then 4-5 hour a night from there on. Not well, still getting the fasciculations and all over muscle twitches. Mentally, very fearful and anxious and trying therapy. This whole time I feel it's physiological, but everyone says address the mental. So I add therapy and CBT 

Oct '23 drop from 1 mg to .5 klonopin.  now getting involuntary limb movements. Laying on back in yoga and both arms flail up. Beginning of extreme random muscle twitches, popping like popcorn all over my body and muscle involuntary movements, mostly at night or early am in bed.

Nov23-Feb 24 constant severe body muscle jerks. NOT typical hypnic sleep jerks, but quite literally random muscles twitches 24/7, contracting and jerking me awake. Anywhere there is a muscle has twitches. I have been to 2 different neuros and many other specialists (EMG, EEG, nerve conduction, hemetology, rhuemetology, MRI spine/head/l spine, CT body, U/s, bloodwork etc) One neuro WANTS me on permanent klonopin and high dose of depakote. The other (Mayo trained) said it's my insomnia causing the muscle twitches, jerks  but he has NOTHING to offer.  EMG and nerve needle test ok. I WANT to be off all meds, but my way hasn't had good results. I tried reinstating low dose klonopin .25 and 500 depakote, per neuro suggestion...but only for a couple weeks and got off which made my neuro not happy. No help.

I have electrical body shocks and severe muscle jerks that move my limbs, shoulders, neck, mouth, any muscle.  I am tapered down to .125mg klonopin (been on this dose for over a month) and these shocks and muscle jerks are BAD. It's terrifying and happen dozens if not a hundred times a night. Some nights it's an hour of sleep with nightmares,. Please if anyone had this severity of muscle issues and insomnia AND what you did to help. My Dr. are not helping and I feel like I'm on my own to figure this out. I felt like muscle jerks, jolts electric jolts and did an EEG which was clear.

As I type, my left scapula is thumping like a heartbeat, my calves and thighs are popping. If I had to live my daytime life like this, I can. BUT it's the nighttime where I cannot sleep is what is unbearable and when the muscle go crazy and hands/muscle/face/legs move on their own. Please, if someone has advice, please post. thank you

 

Edited by [oc...]
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Hello @[oc...],

Welcome to Benzobuddies!  

Wow, it sounds like you have really been through the ringer.  I am so sorry for everything that is happening to you.  That is quite a long list of benzos, z-drugs and others that you've been on.  I'm not surprised by all of the symptoms that you are experiencing.  I personally don't think that this is caused by anxiety, especially if you don't have that in your medical history.  It does make sense that you would be dealing with anxiety now based on your level of symptoms and the number of meds you have been put on.  This sounds very much like withdrawal.  

The good news is that there are many people who have written success stories here who were in the same spot that you are now.  I believe in recovery.  

I just had a clarifying question so that folks can give you the best advice:  what meds are you currently still taking, along with dosage and time spent at the current dose?  

I am so glad you found us and we'll do our best to help you.

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Do you have a benzo-wise doctor? Forget about getting off meds right now as maybe it’s best to stabilize. Even if that means increasing the Klonopin.

To me it also sounds like withdrawal.

I believe Ashton talked about body jerks as well.

Sending you all positive prayers ❤️

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On 07/02/2024 at 10:21, [[o...] said:

Thank you 

I was on these benzos just to try to sleep when my body stopped sleeping for days... trazadone, Seroquel, Ambien...etc. none really worked well enough or I didn't a big enough dose.

Now in on hormone therapy (estrogen patches and oral progesterone) and .125 Klonopin and 10 mg doxipen this last week, which is not helping. Twitching started after start of taper from 1mg to .5

Edited by [oc...]
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Maybe if you updose to 1 mg the twitching will stop.

After you stabilize for awhile there are people here who will help you taper.

You’re going through so much and I am so very sorry. You will heal though. You will!

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On 08/02/2024 at 06:21, [[o...] said:

I tried reinstating low dose klonopin .25

Did you updose by 0.25mg or up to 0.25mg?  In other words did you go up to 0.75mg after you cut to 0.5mg or did you go up to 0.25mg after you tapered down to 0.125?

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I went from 1 to three quarters to a half, a quarter. Then took 0.125 for about a month. This week I tried 5 days of no Klonopin. Even worse nights. So last night I took .125. I did sleep a few hours but I don't know if it was the Klonopin or just for me being up the previous nights

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@[oc...]

Hi there,

I’m going to leave some extremely helpful links here. I would advise that you try and get in contact with Nicole Lamberson among others. They’re amazing people and will help you tremendously.

Links:

https://youtube.com/@taperclinic?feature=shared
 

https://taperclinic.com/

https://www.benzoinfo.com/

https://www.benzoinfo.com/nicole-lamberson/

Please educate yourself through Josef’s YouTube channel and familiarize yourself with the Ashton Manual. There are other various coaches on the BIC website/Josef’s website as well.

You will persevere.

Edited by [Mi...]
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1 hour ago, [[j...] said:

Thank you. So when did you reinstate the 0.25mg?

That was over a months ago

 I was on .125 for a few weeks, my neurologist wasn't concerned about the Klonopin and said that .5 was a tiny dose. So I went up to .25 for a couple weeks when I tried it with depakote. I know I'm all over the place..but I'm not even sure it's benzo withdrawals. That insomnia is the issue as the second neurologist concluded. Either way, I feel screwed that I'm on some med either way 

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We're not medical professionals, so we cannot diagnose you. But what we can tell you is that many people in benzo withdrawal experience the muscle issues you've mentioned. I also find it interesting that these muscle issues only started when you drastically reduced your dose from 1mg to 0.5mg. Also benzo's are very strong muscle relaxants. So once you reduce, the muscles act up. 

The updose you tried might not have been enough, considering your starting dose. I think you have two options, you can either tough it out since you've been off, or you can consider reinstatement. I don't know what you feel comfortable with.

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Medical literature references muscle jerking during withdrawals. As @[je...] said, benzos are a very effective muscle relaxant. They're given for seizures. When you remove the benzo, you get the opposite of the relaxant effect.

The insomnia could very well be due to benzo withdrawals. Going from 1mg to 0.5 mg is generally not recommended. Even the American Psychiatric Association has published a decrease of only 10% every week and even that recommendation is on the high side. From 1 to 0.5 of clonazepam is a huge jump...

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

We're not medical professionals, so we cannot diagnose you. But what we can tell you is that many people in benzo withdrawal experience the muscle issues you've mentioned. I also find it interesting that these muscle issues only started when you drastically reduced your dose from 1mg to 0.5mg. Also benzo's are very strong muscle relaxants. So once you reduce, the muscles act up. 

The updose you tried might not have been enough, considering your starting dose. I think you have two options, you can either tough it out since you've been off, or you can consider reinstatement. I don't know what you feel comfortable with.

To clarify , I had small muscle twitches after my injury in Nov 22.  And non stop muscle fasciculations in my calves. But the intense 24/7 muscle popping and night myoclonus and electric zaps are after the 1.0 to .5 drop. it's possible that the muscle twitching is progressing regardless of the benzos or sleep related. The only variable I can change is the Klonopin dose. Unless my sleep somehow improves. Thank you all for the words of recovery and that many have been here too

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Dear Ocean, I can tell you that in time it all gets better. I am almost sixty eight years old. In 1998 when I was forty two. I had worked as a Journeyman Offset Lithographer (Printer) for over twenty seven years. I was finally overcome with a solvent that I had used daily, by not only dipping my hands into but breathing it as well with no safety equipment.

     Long story short after a year of seeing specialists, I was formally diagnosed with Toxic Encephalopathy, peripheral neuropathy, chronic fatigue, fibromyalgia, and chronic insomnia. As well as MCS or (Multiple Chemical Sensitivity Syndrome). My then Iowa Neurologist put me on 1,500 mg's of Depakote a day, and later some Topomax, and then 1 mg of Klonopin, that got raised to 2 mg later. Which I was on from 1999 to 2014 or so, when I started my taper.

     I subsequently had a terrible protracted withdrawal, after I switched over to Valium, and had a rather fast dry cut taper. All in all it effected me for almost two and a half years, and my symptoms were "many" with no windows. The last month of August 2017, after already being terrible, I surged to super crazy levels. I had bad myclonic jerks, twisted stomach, blurred vision, eye floaters, terrible tinnitus, chronic anxiety, depression, agoraphobic, psychosis, and a lot more.

     Then after suffering almost two and a half years of torture, I woke up the first day of September 2017 100% healed. It was just like it never happened! All those jerks and twitches finally paid off! Some of the things I credit to my survival are infrared sauna, eating organic, no sugar, no grains, very low carbs, and grass fed grass finished beef. Besides that I found a lot of relief from Chiropractic, and deep tissue massage over time.

Some things I found on my journey that can hinder ones healing are many. Some environmental, and many diet related. I learned that there are so many things that can act as an agonist. Some of these are NSAIS (they all have a black box warning on them) even though they are over the counter. MSG is another problem, as is food coloring. Even aspirin, (which has no black box warning) but still hits off ones Gaba receptors. As do chemicals in "MANY" household cleaners. Scented candles, and fabric softener are other bad toxins for the brain. Aspartame is also a huge agonist. As are the chemicals in cigarettes. I have seen many things "light people up" so to speak and launch them into a bad wave. Like Lidocaine set a guy I know back six months. As do many antibiotics (especially fluoroquinolones). Chuck Norris's wife almost did not make it six years ago from getting some "contrast shots" called Gadolinium. A rare earth mineral, that will not do your CNS any favors in Benzo withdrawal.  Myself, I am of the mindset that one can never "drug themselves" happy or normal. The average side effects of all prescription drugs is seventy! But a lot of popular ones have about four hundred per drug. 

According to three brain-scans in 1998, the solvent had taken 25 to 30% of my left front temporal lobe out. With Glutamate increases to both frontal lobes, a decreased blood-flow to the right side of my brain, and a broadening of the NAA peak (whatever that is)  Lol!   

     I can tell you that my brain injury from solvents, and my Benzo injury were a lot different. I have seen "many" people heal over the past six years besides myself. It takes time, we did not get this way overnight, and it takes time to get better. But I have found "everybody" to heal in time, even the long haulers, so never give up hope. Oftentimes healing is in baby steps, but it is still healing!  Hang in there and "never" give up hope, you can and will heal!     :  )

 

Edited by [Ne...]
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This sounds like me. My doctors are stumped by the muscle spasms and hourlong chills I also have, and think I "just" need to manage anxiety. They also kept on trying to tell me that it was sleep jerks. Sure, daytime too and hundreds of times at night. 

I am now believing it is withdrawal from tapering SSRI. I have upped the dose again and hope it will work. But my nervous system is hypersensitive now. 

I get Zopiclone which lets me have 5+ hours of sleep. But I don't feel that I get better, it is just keeping me from going completely mad from lack of sleep. 

 

Sorry, no help but I wanted to say that I completely understand how it is. 

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5 hours ago, [[N...] said:

Dear Ocean, I can tell you that in time it all gets better. I am almost sixty eight years old. In 1998 when I was forty two. I had worked as a Journeyman Offset Lithographer (Printer) for over twenty seven years. I was finally overcome with a solvent that I had used daily, by not only dipping my hands into but breathing it as well with no safety equipment.

     Long story short after a year of seeing specialists, I was formally diagnosed with Toxic Encephalopathy, peripheral neuropathy, chronic fatigue, fibromyalgia, and chronic insomnia. As well as MCS or (Multiple Chemical Sensitivity Syndrome). My then Iowa Neurologist put me on 1,500 mg's of Depakote a day, and later some Topomax, and then 1 mg of Klonopin, that got raised to 2 mg later. Which I was on from 1999 to 2014 or so, when I started my taper.

     I subsequently had a terrible protracted withdrawal, after I switched over to Valium, and had a rather fast dry cut taper. All in all it effected me for almost two and a half years, and my symptoms were "many" with no windows. The last month of August 2017, after already being terrible, I surged to super crazy levels. I had bad myclonic jerks, twisted stomach, blurred vision, eye floaters, terrible tinnitus, chronic anxiety, depression, agoraphobic, psychosis, and a lot more.

     Then after suffering almost two and a half years of torture, I woke up the first day of September 2017 100% healed. It was just like it never happened! All those jerks and twitches finally paid off! Some of the things I credit to my survival are infrared sauna, eating organic, no sugar, no grains, very low carbs, and grass fed grass finished beef. Besides that I found a lot of relief from Chiropractic, and deep tissue massage over time.

Some things I found on my journey that can hinder ones healing are many. Some environmental, and many diet related. I learned that there are so many things that can act as an agonist. Some of these are NSAIS (they all have a black box warning on them) even though they are over the counter. MSG is another problem, as is food coloring. Even aspirin, (which has no black box warning) but still hits off ones Gaba receptors. As do chemicals in "MANY" household cleaners. Scented candles, and fabric softener are other bad toxins for the brain. Aspartame is also a huge agonist. As are the chemicals in cigarettes. I have seen many things "light people up" so to speak and launch them into a bad wave. Like Lidocaine set a guy I know back six months. As do many antibiotics (especially fluoroquinolones). Chuck Norris's wife almost did not make it six years ago from getting some "contrast shots" called Gadolinium. A rare earth mineral, that will not do your CNS any favors in Benzo withdrawal.  Myself, I am of the mindset that one can never "drug themselves" happy or normal. The average side effects of all prescription drugs is seventy! But a lot of popular ones have about four hundred per drug. 

According to three brain-scans in 1998, the solvent had taken 25 to 30% of my left front temporal lobe out. With Glutamate increases to both frontal lobes, a decreased blood-flow to the right side of my brain, and a broadening of the NAA peak (whatever that is)  Lol!   

     I can tell you that my brain injury from solvents, and my Benzo injury were a lot different. I have seen "many" people heal over the past six years besides myself. It takes time, we did not get this way overnight, and it takes time to get better. But I have found "everybody" to heal in time, even the long haulers, so never give up hope. Oftentimes healing is in baby steps, but it is still healing!  Hang in there and "never" give up hope, you can and will heal!     :  )

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

We're glad you're here and thank you for sharing your journey.  Its so important our members hear from those who have recovered.

You've made some claims we're going to need citations for, specifically the substances you say affect GABA, thank you,

Pamster

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18 minutes ago, [[P...] said:

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

We're glad you're here and thank you for sharing your journey.  Its so important our members hear from those who have recovered.

You've made some claims we're going to need citations for, specifically the substances you say affect GABA, thank you,

Pamster

Thanks for the welcome, but I am not sure what citations are? Do you possibly mean it is OK to post a link of where I got the info from? Or am I way off base?  :  )   If you look each of those things up, I believe you will see how they do in fact in some way affect the Gaba receptors.

     So if I make any other claims like that, I just need to post supporting links?  Are you talking about me going back to what I said and adding supporting links, or are you going to check it out?   I am a little slow and just learning here!   Thanks again.................   Bob

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57 minutes ago, [[N...] said:

Thanks for the welcome, but I am not sure what citations are? Do you possibly mean it is OK to post a link of where I got the info from? Or am I way off base?  :  )   If you look each of those things up, I believe you will see how they do in fact in some way affect the Gaba receptors.

     So if I make any other claims like that, I just need to post supporting links?  Are you talking about me going back to what I said and adding supporting links, or are you going to check it out?   I am a little slow and just learning here!   Thanks again.................   Bob

Credible and hopefully peer reviewed citations for your statements would be helpful and yes, posting the link is the best way to back up your claims.  Thanks for working with us. :)

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@[Ne...]Welcome to Benzo Buddies!  I think @[Pa...] has already touched on this, but your comment about people that take longer than three years to heal are probably exposing themselves to something that is hindering their healing sounds like an over generalization.   I know you are speaking anecdotally because there is no scientific research on the subject.  There are so many members here who are fragile and wanting to believe they will heal one day, and when we make broad, sweeping statements based on anecdotal evidence it can be very scary to them.  Most people know to stay away from alcohol, marijuana, other recreational drugs, etc. but opening the door to a multitude of things that could effect their healing, could be very overwhelming.   One thing we try very hard to do on this forum, that may be different than other forums, is to not speak prescriptively or with absolute authority.  There is very little scientific research on the effects of benzos on the brain, so the only thing we can say for sure is that everyone is unique in how they are affected, and everyone's journey to healing is different.  Glad you are here.  I know your words have helped lots of people on their journey through the years!!!!

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I had bad muscle spams, jerks for some months. It's very common as is the insomnia you describing.

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5 hours ago, [[n...] said:

I had bad muscle spams, jerks for some months. It's very common as is the insomnia you describing.

Thank you everyone for your replies. How about the electrical body jolts at night? They are very severe followed along with the muscle jerks. Sorry, if I updose and it goes away, will slow taper even make a difference when I get down to .25 or .125 again?

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1 hour ago, [[o...] said:

Thank you everyone for your replies. How about the electrical body jolts at night? They are very severe followed along with the muscle jerks. Sorry, if I updose and it goes away, will slow taper even make a difference when I get down to .25 or .125 again?

Yes it might be worse when body is tiref and trying to relax. 

I had crazy spasm for awhile. A leg or arm could just fire off and kick really hard.

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You might trying to go down slower.

 Just try to stabilize first of all.

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