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

[[Bo...]]

Yes have had this all…. It’s pretty common with Klonopin, and all the drastic changes are definitely contributing to it.
Cotta stabilize on one dose and stabilized doesn’t mean feeling good. It just means severity of the symptoms has become kind of predictable and the same over a little bit of time. 
Yes, the doctors can’t do anything about any of this. I have a neuromuscular doctor I’ve seen since 2021 in the middle of my taper, and all they can do is prescribe more medication’s with amplifies the problems and all this. It’s always good to have test done just to rule everything out but other than. Having peripheral neuropathy and nerves going crazy because of the Klonopin, they just can’t do anything but diagnose and then not be able to address it because it’s our bodies having to heal themselves.

So always continue to get things checked out but when they say nothing there, just take it for withdrawal, slow down and stabilize as much as you can and then do a slow taper coming off, is kind of the best approach minimize things. out of all of these benzos Klonopin is the one that really messes with the neurological side of things.

hugs a d hang in there, you can do this. 

[[oc...]]

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

Yes have had this all…. It’s pretty common with Klonopin, and all the drastic changes are definitely contributing to it.
Cotta stabilize on one dose and stabilized doesn’t mean feeling good. It just means severity of the symptoms has become kind of predictable and the same over a little bit of time. 
Yes, the doctors can’t do anything about any of this. I have a neuromuscular doctor I’ve seen since 2021 in the middle of my taper, and all they can do is prescribe more medication’s with amplifies the problems and all this. It’s always good to have test done just to rule everything out but other than. Having peripheral neuropathy and nerves going crazy because of the Klonopin, they just can’t do anything but diagnose and then not be able to address it because it’s our bodies having to heal themselves.

So always continue to get things checked out but when they say nothing there, just take it for withdrawal, slow down and stabilize as much as you can and then do a slow taper coming off, is kind of the best approach minimize things. out of all of these benzos Klonopin is the one that really messes with the neurological side of things.

hugs a d hang in there, you can do this. 

Wow I truly can't believe you and others have gone through this. The full electric jolts and non stop muscle twitches?. After seeing my primary and neurologist yesterday they wanted me to updose. So I did. I took .5 last night (they said even 1.0 if I want) I slept 6 hours, which is very very good. but again awakened with involuntary movements and muscle jerks. Neurologist want me ssri too. Lexapro is what I have 10mg

[[Bo...]]

Yes these meds cause involuntary movements so slow taper off them once stable is best….. even with slow taper people get the involuntary movements and shocks etc as I did. Adding antidepressants can make it worse so just know that. 
neuors and movement disorder specialists only can use meds to ‘help’ And for many in BIND further meds complicates this issue as has been for me now that I’ve Ben given Mirtazapine for akathisia from Klonopin and it’s made it worse. Whatever is used to treat symptoms can make them worse/cause those same symptoms so med free usually is what causes all issues to stop.

[[mc...]]

On 13/02/2024 at 03:51, [[n...] said:

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

Did they just gradually fade out for you? Mine can be very painful and hoping they will fade soon 🤞

[[PE...]]

Yes @[mc...] it did. Only some tinnutus and hangover feeling left.

[[ma...]]

On 7/2/2024 at 21:21, [[o...] said:

Amigos, ha sido un año infernal en el que estaba seguro de que moriría de dolor/insomnio, etc. No puedo explicar cómo se arruinó mi vida. Tuve una lesión en el cuello el 22 de noviembre y tomé MUCHOS medicamentos para el dolor de cuello/nervios. Estos medicamentos arruinaron mi tracto gastrointestinal, sin dolor, y perdí 18 libras, hasta 108 libras como mujer. No podía dormir NADA cero minutos, durante períodos de 3 a 5 días, fui a emergencias muchas veces. Antes, he vivido 53 años de una vida activa, saludable y fuerte sin consumir drogas ni alcohol y evitando los medicamentos. Solía hacer ejercicio 2 veces al día y nunca tuve un problema mental o de ansiedad, etc. El insomnio comenzó después de la lesión y me recetaron algún tipo de medicamento GABA para ayudarme a dormir. Ativan, temazapam, konopin, depakote, gabapentina, ambien...etc. Nunca antes había tenido problemas para dormir.

22 de noviembre al 23 de enero: Lesión en el cuello y dolor en los nervios del brazo. Luego, entumecimiento, fasciculaciones de la pantorrilla después de un mes de insomnio EXTREMO, ERGE y dolor nervioso. No puedo dormir erguido por ERGE. Recibí MUCHOS medicamentos, incluido Ativan (fui a emergencias después de tomar 0,5 mg durante 11 días) y sentí pánico y miedo extremos. Dijeron que era imposible con dosis bajas durante 11 días. Muchas noches sin sueño y pánico comienzan con Ppis y medicamentos para dormir.

Enero-junio: muchos meses de 0 a 4 horas de sueño interrumpido por noche. Ambien obteniendo mis 3 horas máximo hasta que deja de funcionar. Luego trazadona, THC, mirtazapina, amitrip, lo que sea... cualquier cosa para intentar deprimirme. Nada funciona. Estoy pensando que estoy jodido. Voy a morir en este punto. Sigo el consejo de todos de que es ansiedad y pruebe la terapia con otros medicamentos, etc. La falta de sueño ha sido la constante.

En julio, obtenga 1 mg de klonopin. Esto me hace dormir por primera vez en meses. 7 horas la primera noche, luego de 4 a 5 horas por noche a partir de ahí. No bien, todavía tengo fasciculaciones y contracciones musculares por todos lados. Mentalmente, muy temeroso y ansioso y tratando de hacer terapia. Todo este tiempo siento que es fisiológico, pero todos dicen que abordemos lo mental. Entonces agrego terapia y TCC. 

23 de octubre caída de 1 mg a 0,5 klonopin. ahora tiene movimientos involuntarios de las extremidades. Acostado boca arriba en yoga y ambos brazos levantados. Comienzo de contracciones musculares extremas y aleatorias, estallidos como palomitas de maíz por todo el cuerpo y movimientos musculares involuntarios, principalmente por la noche o temprano en la cama.

Del 23 de noviembre al 24 de febrero, sacudidas constantes y severas de los músculos del cuerpo. NO son las típicas sacudidas hipnóticas del sueño, sino literalmente contracciones musculares aleatorias las 24 horas del día, los 7 días de la semana, contrayéndome y despertándome bruscamente. En cualquier lugar donde hay un músculo se contrae. He visitado a 2 neuronas diferentes y a muchos otros especialistas (EMG, EEG, conducción nerviosa, hemetología, remetología, resonancia magnética de la columna/cabeza/columna, tomografía computarizada del cuerpo, U/s, análisis de sangre, etc.) Un neuro me QUIERE con klonopin permanente y alta dosis de depakote. El otro (entrenado por Mayo) dijo que es mi insomnio el que causa los espasmos musculares, pero no tiene NADA que ofrecer. EMG y prueba de aguja nerviosa están bien. QUIERO dejar todos los medicamentos, pero mi método no ha tenido buenos resultados. Intenté restablecer dosis bajas de klonopin .25 y 500 depakote, según la sugerencia del neuro... pero solo durante un par de semanas y lo dejé, lo que hizo que mi neuro no estuviera contento. No ayuda.

Tengo descargas eléctricas en el cuerpo y sacudidas musculares severas que mueven mis extremidades, hombros, cuello, boca, cualquier músculo. Estoy reduciendo gradualmente la dosis a 0,125 mg de klonopin (he estado tomando esta dosis durante más de un mes) y estos shocks y sacudidas musculares son MALOS. Es aterrador y sucede decenas, si no cien, de veces por noche. Algunas noches es una hora de sueño con pesadillas. Por favor, si alguien tuvo esta gravedad de problemas musculares e insomnio Y qué hizo para ayudar. Mi doctor no me ayuda y siento que estoy solo para resolver esto. Sentí sacudidas musculares, sacudidas eléctricas y le hice un EEG que fue claro.

Mientras escribo, mi escápula izquierda late como un latido del corazón, mis pantorrillas y muslos explotan. Si tuviera que vivir mi vida diurna así, puedo hacerlo. PERO es la noche en la que no puedo dormir es lo que es insoportable y cuando los músculos se vuelven locos y las manos/músculos/cara/piernas se mueven por sí solos. Por favor, si alguien tiene un consejo, publíquelo. gracias

I think it's about withdrawal, I suffered for a long time. What you describe, I held on as best I could and finally they left.These drugs destroy our lives.Come on, it's terrible, I know. Courage and strength to endure every storm.

[[oc...]]

Thank you all. I reinstated to .5 as instructed by my neurologist and PCP. I slept for the last three nights since then. I still have the involuntary hand movements in the morning and muscle twitches during the day, but the electrical jolts are gone and I'm getting 6 hours of sleep a night. One step at a time. Thank you all

[[mc...]]

On 14/02/2024 at 10:38, [[o...] said:

Wow I truly can't believe you and others have gone through this. The full electric jolts and non stop muscle twitches?. After seeing my primary and neurologist yesterday they wanted me to updose. So I did. I took .5 last night (they said even 1.0 if I want) I slept 6 hours, which is very very good. but again awakened with involuntary movements and muscle jerks. Neurologist want me ssri too. Lexapro is what I have 10mg

Where is the proof that we can’t stablize to a good quality of life. I hear this parroted a lot. My team of doctors believes that everyone stabilizes to this eventually. I don’t think tapering until you are very stable is a good idea. 

[[PE...]]

15 hours ago, [[m...] said:

Where is the proof that we can’t stablize to a good quality of life. I hear this parroted a lot. My team of doctors believes that everyone stabilizes to this eventually. I don’t think tapering until you are very stable is a good idea. 

I didn't for a whole year. I was totally tolerant and didn't find a difference if i took 150mg diazepam or 5.

I know this ain't standard but still.

[[re...]]

I started developing all of these jerky, head buzzing, terrible insomnia/hypnic jerk things that would would keep me up for days at a time after an emergency room ICU 4 day stay. It was because of neglect and extreme delay to correct my extreme low sodium levels/hyponatremia (120-121 when normal is 136 to 145) where I vomited endlessly outside the hospital doors.  I ended up in a long status epilepticus where i was given extreme intravenous high doses of Ativan, Haldol, Keppra..... talking 3000 mg in my veins here not some pill, Precedex, and of course the lovely Zofran as they thought I was gonna die anyway and had to put me in a medical induced semi coma.

  Then onto Zovirax(Antiviral) Vancocin, Omnipen, Rocephin all strong antibiotics due to a hospital caught staph infection I would have to say possibly because of the first day catheter insert which happens a decent amount from the research I have done. All of this hell because they didn't give me sodium  after the blood tests clearly showed a level of 121 (death can happen below 120)  and delayed care. I mean I am no expert, but I don't think I need 12 years of education to know someone working outside in a Phoenix summer all day long with a sodium level reading of 121 should be given a  drip low dose bag of sodium ASAP. So please forgive me of being critical of docs. I think I have earned the right. As we all have here. 

 I should not still be here really. Seems I have been spared for some reason.  But I am hoping to be of possible help to others and my next post will be more uplifting and positive. 

But  the one thing which burns me the most is that POST CARE what I experienced was COMPLETE DENIAL from ALL the doctors and specialists I saw. Neuros, GP's, whatever, doesn't matter. They did not even entertain the POSSIBILITY that the nuclear bomb of medicine they gave me within a 24 hour period could of caused this extreme jerking/twitching of my body and head burning and buzzing. And told me I should seek therapy for my PTSD...... A serious WTF????????????

And one doc literally two months after my initial hospital stay suggested Mirtazapine (Oh wow who woulda thunk) that two of the main side effects are you guessed it HYPONATREMIA and SEIZURES. Now why would anyone even suggest something like this if they are paying attention???  I could of received  better advice from children working at a lemonade stand.

 

I cannot of course tell you what exactly what to do, but I would for your health and state of mind at least try to steer clear of all doctors if you can at all. If it gives you peace of mind then sure get all the tests diagnostics you feel you need. But be careful about treatment as they will turn their heads and gaslight you if the drugs/treatment turns on you. And then you are left in a black hole of despair and pain all on your own anyway. 

They are symptom managers and dealers over healers ONLY. So if you are looking to HEAL. Doctors really don't have your best interests in mind. This seems to be a reoccurring theme here and in general. And it happened to me BIG TIME in the summer/fall of 2022.

Look, any doctor that has the opportunity, will turn their heads in criminal lies of omission and dismiss the meds are causing this and put it on YOU the patient as to blame and say it is your insomnia/anxiety (insert DSM label here) and not the meds that created major dysregulation in your cns and body. It is their modus operandi as I really believe they somewhat  know what is going on at this point in 2024, but refuse to acknowledge it due to their bread and butter of drugs. This enables the status quo high end burbia lifestyle that everyone ascribes to keep on rolling where the collateral damages keep pilling up. 

And if I am wrong about the intentional ignorance of docs, then the whole medical education system (as it pertains to illness and synthetic drugs, NOT surgical intervention) needs to be revamped as a big ol medical degree is worthless. Now I know there are some doctors fighting the good fight and trying to bring this to attention. Just not enough as more and more injury keeps happening from ALL meds and not just benzos.  

Edited March 8 by [re...]

[[re...]]

Now for the good positive stuff maybe you could gain some insight from. Cause what the heck is complaining and complaining/venting gonna do for anyone but me. 

I am so far doing a bit better as I sleep a decent amount. Still jerk, but not as bad now that I am down to 1.45 mg (from 5mg  started in March then taper started in May) Diazepam. Seems that for now the lower I go the better I sleep, but I have no delusions that I am out of the woods yet and this truly weighs on me in the back of my mind. I have so many fears and concerns about this.  

 

I am walking/hiking and cycling everyday weather permitting and with cycling even went to the highest point in MA (Mount Greylock) 18 mile roundtrip in November which is quite a climb actually. I usually try for 10-15 mile rides with sometimes doing a 25 miler. YES it revs me. It is supposed to due to the fact my body and brain is assimilating to the stress response of exercise and trying to adapt. I am so buzzing and shaky on my rides and for awhile after sometimes, but for some reason when I get home I get in bed just to relax my strain from the activity and just start yawning and yawning like my brain is making some kind of calming chemicals to balance the stress I went through just prior. Sometimes the ringing in my ears is just so loud after a ride or hike and then it slowly gets real quiet after. Like once again something is being produced positively I am preying. I am not bragging at all. After being so destroyed from medicine I finally feel there is some kind of hope in exercise and diet. I keep reading TONS of Pub Med and NIH articles on BDNF, Neuroplasticity, TBI, and it seems all have good things in common with regards to exercise. Lots of times with the exercise intolerance I feel like my heart is gonna explode sometimes with the breathlessness and maybe it will stop ticking and I collapse. So be it. For me what is the sense of being a professional patient when there seem to be no results and it just pads the pockets and wallets of everyone, but me. . It's just my opinion and don't fault any of you doing what it is that makes you feel better. 

But for ME.......I have given up on the symptom management model of modern medical practice and have the attitude "I heal or I die trying doing something I enjoy" But this injury has made me so humble it's just that I don't wanna become paralyzed or bed bound when I finally "jump" or hopefully walk off that I am kind of preparing my body for it as I taper. And I am petrified of it. I won't lie. 

I would at any cost at  least spend half of all that time doing exercise that  you would spend lugging yourself from dealer to dealer trying to find out what is wrong with you when they will just look down upon you and dismiss that their cash cow could be causing you harm. 

 

My diet is decent.  Tons and tons of water with the proper electrolytes throughout the day like salting food decently and eating lots of potassium rich foods as well as one 16 oz. bottle a day of a homemade electrolyte mix.  I am trying to eat meats, fish, eggs, veggies ,fruits, Yogurt,  some nut butters and some plain potato chips for the salt. Also kerry gold Irish butter on many things.  

For supplements: 

Just some zinc, Vitamin C, Nutritional yeast but not daily, Carlsons Cod Liver oil, MCT oil, Magnesium Glycinate in low dose and if my guts are getting backed u then the low dose Citrate seems to be a lifesaver. Also probiotics with extra L plantarum and L. rhamnosus strains. 

 

In closing I hope you all get a hold on your issues with the damage caused by big pharma and their representative's (docs)jj denial of it. I pray for us to all have a place to go someday in an in person group like setting similar to  AA, but relating to tapers and methods we can discuss together while we try and get better. 

 

All the best. 

[[re...]]

Hey Oceanlove I am so sorry if I used your thread as a venting vehicle, that was not my intention. How are you doing lately?

It is just so hard for me to see people in such pain become ignored by the professionals that are paid (Big bank) that are supposed to help you. And I will agree with most here that 1 to .5 is a HUGE cut. And going all over the place with doses is not doing your brain any favors. The one thing is routine with these medications and prn really should be changed or looked at a bit more in depth for the most part. Prn is very dangerous with any kind of seizure meds and benzos are kinda weak seizure meds.  I would try and get stable somehow before anymore cuts. The worst part about all of this is they got you on a goose chase and please be very careful on this. Is it possible you can find a doctor willing to give you valium maybe 15 mg? It really is a better med to taper once you have been hit so hard by all these other rapid reductions and meds. 

Edited March 8 by [re...]

[[Pa...]]

@[oc...]

I am sorry you are going through all of this. Here are my observations and suggestions:

1. You first need to get on a stable dose of klonopin. It would be helpful for you to post a list of everything you are currently taking and your current dosage. Updosing to get stable is your choice, and it does sound like you’ve gone back up to .5. Once you get on stable dose hold until symptoms are predictable. That doesn’t mean absent just predictable. Hopefully that will improve some things. 
2. Many of your symptoms sound like withdrawal symptoms which I would expect given the history your sharing (ie cutting your dose of K by 25-50%). It is not recommended to reduce your dosage by more than 5 to 10% every 2 to 4 weeks. This applies to Ambien as well. And please be careful about stopping these meds, and then restarting them again which can cause kindling.

There’s information on this site as to how to properly taper as well as the methods for doing so. But again, I would not start tapering until you stabilize on a dose of Klonopin.

3. I don’t know how long you’ve been on the other medication’s. But I would not add more medication to the mix unless they’re medically necessary. Anti-depressants can complicate tapering k. And they come with their own risks, including the need to be tapered. I would research every medication you’re putting into your body with the benzodiazepine. Sometimes it’s helpful to search “gaba” plus  the name of the medication you’re considering taking. 

The brain likes consistency so the sooner you can get on a consistent regiment I think the sooner you’ll start to feel better. I think right now there’s too many things coming in and out of the mix, plus the substantial drop in Klonopin, contributing to symptoms. 

I hope you see some improvement soon and wishing for better days for you. 
 

p

Edited March 9 by [Pa...]

[[em...]]

I think it is withdrawal from tapering SSRI. My friend had this. This interfered with his daily functioning. I helped him in many ways, because at that time he was finishing his first year at the university. I started looking for help for him and found https://canadianwritings.com/. Fortunately, he managed to close his first year at the university. He is better now. I hope that everything will be fine

Edited May 22 by [em...]

[[ca...]]

On 13/02/2024 at 12:40, [[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?

Hello Oceanlove,  I have read your story and I am going through the same. I have not slept more than 2 may be 3 hours in over a year and I cant describe how I feel. I am experiencing all the muscle jerks,spams that you are describing along with severe anxiety and shortness of breath and I do blame the lack of sleep responsible for this.  I tried to sleep and my body simply can't relax, not functioning either. I was also on Klonopin but had a rather fast taper and suffering.  

Has your sleep resolved. I am so desperate and sometimes I feel like I am loosing it. 

[[oc...]]

Carlos,

First off, I am sorry. Pls tell me how long you are off all benzos and all meds?

I also did not sleep for a year and a half. 0-3 hours and it was NOT natural relaxing/restorative sleep. It was a level of unconsciousness 'close', but not sleep. It was about 3 weeks after I stopped meds/klonopin that I got a couple hours of natural sweet sleep! I was not a long time, BUT it was natural. You can FEEL the difference and that was my telltale sign I was not dying. Now, I get 5 hours of sleep and so will you. It's the quality of sleep that excites me as the body restores itself, it's has a regular feel to it. It's impossible for anyone to believe this level of insomnia, but it is torture beyond imagination. I truly thought I lost the ability to sleep and I was unique in this and would die from this and my symptoms. It was horrifying and traumatic. My symptoms were nightmares, electrical wires like my muscles are short circuiting, panic levels like I was dying anxiety, severe myoclonus, muscle jerks and zaps electrical tazing and involuntary muscle movements/muscle fasculations, wt loss and GERD like symptoms/reguritation or acid (from involuntary esophogus and stomach spams).. It was scary, it was surreal. In my 55 years of life, my strong logical mind and athletic body went crazy when I got polydrugged for a sports injury. 3 neurologists, emg, nerve conductions tests, EEG, functional meds, pychiatrists, SSRI, antipsychotics meds.....ALL TO FIND OUT IT WAS THE BENZO CAUSING THESE SYMPTOMS. They said it was the cure, not the cause and I believed them. I never had anxiety, mental health no drinking no drugs...just strong and normal.

I am exactly 5 months off and healing. I felt electrocuted and tazed hundreds of times a night with limbs jerking and myoclonus in every possible muscle in my body..it was horrifying. It wasn't until I kept reading here and reddit benzo recovery that others had that too, and time will help it resolve. THAT is when I knew the Dr. didn't know shit and you folks should be teaching these white coats something. YES I still get myoclonus every morning but it's light and not as scary as I know what it is now. A finger will move on its own or hand or foot, scalp zaps...Whereas before it was a hip thrust, mouth gapes open, legs and arms jerk and hits my face all night...etc. Scary stuff.

My muscle fasiculations continue to this day and visible muscle twitching. Again, it;s BETTER and LESS than it was before but still there. I hear it may be 18 months for resolution and I accept this. I can only accept that I have been damaged and I can heal. I have nonstop random muscle twitches. It's unbelievable as I am a medical worker for 30 years and believed in Dr. to HELP. It's taken a long to time forgive the Dr's and my friends who tried to help me by giving me these drugs.

 

BUT....I am getting better. I can and do sleep naturally, 4-6 hours. So will you. Feel free to comment on  your symptoms Carlos so I can learn if these symptoms match yours. Thanks, sorry so long winded

 

PS For me exercise has been my drug of choice. Even in the throes of the worse unabated panic attacks, muscle jerks and days of non-sleep..I exercised like my life depended on it. Not little walks here or there. I pushed my body to swim, surf, mtn bike, HARD. Finally, I QUIT the benzos and for me, I never wanted them. The Dr. kept saying it's the cure. When I listened to my therapist, she said do what you feel is of greatest value to you. SO, I said being drug/alcohol free was always my way and so I tapered and quit and flushed them down the toilet. THAT was the turning point to know IT was the cause and now it's only time and more time

Edited Wednesday at 08:43 by [oc...]
additional info

[[ca...]]

6 hours ago, [[o...] said:

Carlos,

First off, I am sorry. Pls tell me how long you are off all benzos and all meds?

I also did not sleep for a year and a half. 0-3 hours and it was NOT natural relaxing/restorative sleep. It was a level of unconsciousness 'close', but not sleep. It was about 3 weeks after I stopped meds/klonopin that I got a couple hours of natural sweet sleep! I was not a long time, BUT it was natural. You can FEEL the difference and that was my telltale sign I was not dying. Now, I get 5 hours of sleep and so will you. It's the quality of sleep that excites me as the body restores itself, it's has a regular feel to it. It's impossible for anyone to believe this level of insomnia, but it is torture beyond imagination. I truly thought I lost the ability to sleep and I was unique in this and would die from this and my symptoms. It was horrifying and traumatic. My symptoms were nightmares, electrical wires like my muscles are short circuiting, panic levels like I was dying anxiety, severe myoclonus, muscle jerks and zaps electrical tazing and involuntary muscle movements/muscle fasculations, wt loss and GERD like symptoms/reguritation or acid (from involuntary esophogus and stomach spams).. It was scary, it was surreal. In my 55 years of life, my strong logical mind and athletic body went crazy when I got polydrugged for a sports injury. 3 neurologists, emg, nerve conductions tests, EEG, functional meds, pychiatrists, SSRI, antipsychotics meds.....ALL TO FIND OUT IT WAS THE BENZO CAUSING THESE SYMPTOMS. They said it was the cure, not the cause and I believed them. I never had anxiety, mental health no drinking no drugs...just strong and normal.

I am exactly 5 months off and healing. I felt electrocuted and tazed hundreds of times a night with limbs jerking and myoclonus in every possible muscle in my body..it was horrifying. It wasn't until I kept reading here and reddit benzo recovery that others had that too, and time will help it resolve. THAT is when I knew the Dr. didn't know shit and you folks should be teaching these white coats something. YES I still get myoclonus every morning but it's light and not as scary as I know what it is now. A finger will move on its own or hand or foot, scalp zaps...Whereas before it was a hip thrust, mouth gapes open, legs and arms jerk and hits my face all night...etc. Scary stuff.

My muscle fasiculations continue to this day and visible muscle twitching. Again, it;s BETTER and LESS than it was before but still there. I hear it may be 18 months for resolution and I accept this. I can only accept that I have been damaged and I can heal. I have nonstop random muscle twitches. It's unbelievable as I am a medical worker for 30 years and believed in Dr. to HELP. It's taken a long to time forgive the Dr's and my friends who tried to help me by giving me these drugs.

BUT....I am getting better. I can and do sleep naturally, 4-6 hours. So will you. Feel free to comment on  your symptoms Carlos so I can learn if these symptoms match yours. Thanks, sorry so long winded

PS For me exercise has been my drug of choice. Even in the throes of the worse unabated panic attacks, muscle jerks and days of non-sleep..I exercised like my life depended on it. Not little walks here or there. I pushed my body to swim, surf, mtn bike, HARD. Finally, I QUIT the benzos and for me, I never wanted them. The Dr. kept saying it's the cure. When I listened to my therapist, she said do what you feel is of greatest value to you. SO, I said being drug/alcohol free was always my way and so I tapered and quit and flushed them down the toilet. THAT was the turning point to know IT was the cause and now it's only time and more time

Hi Oceanlove, thank you very much for your feedback. I really appreciate it.
I was in klonopin for 2 years but started to develop tolerance withdrawal. That led to start discontinuing this poison on 2024. I started a rather fast taper as I had noticeable what I was doing and 42 days ago I had my last dose of .5mg as my body was not tolerating the drug anymore.
I went through all the acute withdrawals but now I'm experiencing the most painful and uncomfortable symptoms that I have never experienced before. Sometimes I'm temped to reinstate but I don't want to go through this again.
Heightened anxiety
Depression
Severe shortness of breath
Severe insomnia (only micro sleeping not know if I sleepnot not) consciously awake the entire night.
Muscle pains
Ringing of the ears, mostly the right one
Muscle jerking mostly on my left side
My hands and feet twist like if I have down syndrome
My brain feels like I am being stabbed the entire day and night , especially the left side
Sinuses that have been around 2 months
Palpitations 
Chest pressure
Weight lost(25 lbs)
Fatigue and weakness
Restlessness
Agitation
I was just like you, a hard core athlete. I don't recognize myself today. Am so desperate,frustrated,feeling hopeless.
I see that 5 month off you feel better soon there is hope for me I guess.  I'm 53 years old but people often told that I didn't look my age because I was healthy,active and more. Here is a picture of me 2 1/2  years  before all of this started. Hoping there is no brain damage
How are you feeling today????

What state are you in?

excuse any typos

 

t

Edited Wednesday at 14:54 by [ca...]
Hoping there is no brain damage. What state are you in?

[[oc...]]

Hi Carlos. I love that pix of you and YOU are still there, regardless of what this poison is tricking our mind to believe is permanent and enduring, it is not. We were physically strong and CAN heal like everyone else, but KNOWING benzos was the cause and moving forward has been life changing. 

My worst symptoms started in w/d and tolerance too. I was on 1 mg K for sleep and I independently wanted to go down to .5 then .25mg and that's when SH* hit the fan and tolerance set in. I was on ativan/temazapam for sleep prior. When I went off is when the akasthasia started. I even had eardrum twitching (airplane woosh) after temazapam along with jerking limb movements and nightmares etc.  Yes for me tolerance was the worst BUT you are 42 days out. I am 5 months out and started feeling better week by week. I think you are VERY close to experiencing some good/better days.

I lost 18 lbs during this ordeal and thought I was dying as I stepped on the scale at 108lbs. I had been 125-130 lbs since high school. It was all muscle that I lost. I'm getting it back, but at age 55, I was 'maintaining' my muscle mass not gaining. So I understand the fear when an athletic body becomes unrecognizable, it only fuels the fear that something is drastically wrong. Well, I'm back to my original weight and 4 lbs more. It's not as muscular and may never be...BUT I proved that I can eat and gain weight back. That took many months after the benzo stopped f*&king with my GI tract.

 

I cannot tell you what you should do. For me, I HAD to get off this poison. I knew I was going to suffer, but I was already suffering so badly. I had to put aside the fear and go thru with the unknown of insomnia, muscle movements, panic and such. Well, it got better. ESPECIALLY my mind. It grew strong again and at one point I thought I lost my mind. It's back and I can only say it was the meds. and insomnia and fear. Why, how, what...I don't know but neither do the Dr.s. All I know is the root cause is not important now for me, it's WHAT am I going to do about the symptom management and living my life. I nearly lost my 30 year career and marriage as I/he didn't know WTH was going on with my body and mind. It will come back and did for me. I am back at work and the friends that I thought I lost, are back. Some tried to help, others stepped away from me...others supported me altho none of us knew what was going on. Nobody thought it was the meds. Well, it was.

 

3 Dr.s (neurologist, physchiatrist and functional med dr) plus my nurse friend encouraged me to reinstate when I was in tolerance at .125-.25. I was SO bad, they didn't know what to say or do. In my case, it was a mistake. When I went up, it never made me feel better, just changed symptoms. Whenever I dropped back down to .125 or so, the ZAPs the myclonus, jerks,  insomnia...was off the charts. I finally said, I will stop and die or I will stop and get better. Either way, I will stop. Only one young Muscular Neurologist verified Klonopin wd can cause myoclonus and supported my decision to taper. I did and so can you. It was a specific week that I felt MUCH better maybe in month 2, that I disposed of all the remaining benzos and ambien. I was never going to reinstate and I knew it. That was my journey and my thought process. Everyone is different but reinstating only prolonged my suffering I believe. But there is a time for each decision and your conviction will guide you.

Carlos, I understand SEVERE insomnia. I really do, I cannot bullshit you. I thought I was dying with 15 minutes or multiple days of ZERO sleep. Yes, zero. I remember every waking moment, it was torture. I AM SLEEPING again. I slept 7 hours last night, with a few wakenings and minor myoclonus in the AM. I am not healed, but I am progressing. LMK if you want anymore info on what I went thru. I am happy to tell you my experience which I thought was unique but seems it is not. Take care and be well.

 

Edit: How am I and how am I feeling today? I mtn biked twice today, I made dinner for my son. I am working tomorrow. I met with two friends today. I STILL have symptoms, I still feel and see my muscles twitching and I still struggle with myoclonus and anxiety associated with this damage. I still cannot believe what has/is happening BUT I am improving. Fake it til we make it. And we will make it. I am traumatized, but the worst of the the memories ARE fading and being replaced with REAL and unquestionable moments of real bodily and mind healing. For me, I must keep moving as I am 'exercising' the demons out of my body and replacing the poisoned neurotransmittors with healthy endorphins and NEW and healthy neuroplasticity changes. I am so much better and functioning at a much higher level than I was at 2-3 months off. I was measuring week by week, now it's month by month and it's MUCH MUCH better. Hoping even better months to come. I am certain of it.

Edited 18 hours ago by [oc...]

[[oc...]]

I am going to go on and add one thing because it helped me. If it helps ONE other person, than that makes my day/month/year.

I was surfing ( I live in beautiful Hawaii) and ran into a guy who works in in a dual diagnosis addictions clinic. He was a heroin, benzo, polydrug user. I asked him about my symptoms and benzo withdraw and said can this be?? He smiled and said of course its the benzos. That HE went through benzo withdrawls along with heroin and methadone wd. One instance he had obstained from all drug use for 3 months. He said he didn't sleep for 30 days. He was bedridden and after 90 days clean, had to reinstate. He said that was methadone and they gave that to him to 'help' him with heroin withdrawl. He said it was worse than heroin. Then his friend on the longboard next to him said he was on benzos too and I am par for course. That my timeline (3 months at the time) was exactly what he expects to see at my timeline of recovery/healing. He said unequivacally, it WILL come back, the sleep, the mind the body etc. He is 5 years clean and now works for an addictions clinic as he has lived through it all. He did all the tests like me. MRI, endoscopy, colonoscopy, Cat scans, neurologists test etc.....only to discover the sickness were all symptoms of withdrawl. His assurance that this WAS the cause not the cure...and that many before me have endured the same and came out FINE was reassuring that I was on the right track. He said healing can be 12-18 months but if I keep at the hard exercise and challenging myself mentally, I will improve. I almost did not take a vacation after I quit the benzo because I thought I was going to die from not sleeping. I left all my benzos, ambien and unisom in the USA and went to Canada to brave it....and guess what? I slept ok. I rested and I got a little better. Those multi days of wicked insomnia are fading and I will not take a pill and let my body heal naturally as I have always believed in. Some ppl can use other substances, none worked for me and caused me more anxiety. I will continue my path, I hope you find yours.

Edited 18 hours ago by [oc...]

[[ca...]]

7 hours ago, [[o...] said:

I am going to go on and add one thing because it helped me. If it helps ONE other person, than that makes my day/month/year.

I was surfing ( I live in beautiful Hawaii) and ran into a guy who works in in a dual diagnosis addictions clinic. He was a heroin, benzo, polydrug user. I asked him about my symptoms and benzo withdraw and said can this be?? He smiled and said of course its the benzos. That HE went through benzo withdrawls along with heroin and methadone wd. One instance he had obstained from all drug use for 3 months. He said he didn't sleep for 30 days. He was bedridden and after 90 days clean, had to reinstate. He said that was methadone and they gave that to him to 'help' him with heroin withdrawl. He said it was worse than heroin. Then his friend on the longboard next to him said he was on benzos too and I am par for course. That my timeline (3 months at the time) was exactly what he expects to see at my timeline of recovery/healing. He said unequivacally, it WILL come back, the sleep, the mind the body etc. He is 5 years clean and now works for an addictions clinic as he has lived through it all. He did all the tests like me. MRI, endoscopy, colonoscopy, Cat scans, neurologists test etc.....only to discover the sickness were all symptoms of withdrawl. His assurance that this WAS the cause not the cure...and that many before me have endured the same and came out FINE was reassuring that I was on the right track. He said healing can be 12-18 months but if I keep at the hard exercise and challenging myself mentally, I will improve. I almost did not take a vacation after I quit the benzo because I thought I was going to die from not sleeping. I left all my benzos, ambien and unisom in the USA and went to Canada to brave it....and guess what? I slept ok. I rested and I got a little better. Those multi days of wicked insomnia are fading and I will not take a pill and let my body heal naturally as I have always believed in. Some ppl can use other substances, none worked for me and caused me more anxiety. I will continue my path, I hope you find yours.

Wow, this is inspiring,  very inspiring.  

My doctor wants to reinstate on Diazepam 2mg 3x a day which i took 1mg last night and made feel like crap. I really don't want to reinstate,  o have been through hell and back. I have quite a few stressor in my life right now that are making my recovery even more difficult. Anxiety levels through the roof, insomnia and shallow breathing are really taking a toll on me. Last night I took hydroxyzine I think o slept like 4 hours but like you said, I would love for my brain to heal on his own. Also depression is hitting hard which I'm thinking about starting Lexapro but I'm hesitant of these additional chemical in my brain.

This is so freaking tough, very tough. Today is day 44 and I don't feel any better. I messed up by taking a rescue dose a few days ago and the 1mg of Diazepam last night. My mind is all over the place I dont want to lose it. 

 Did you ever get on an antidepressant ?

Edited 10 hours ago by [ca...]
Did you ever get on an antidepressant

[[oc...]]

carlos, I took it all. Trusting the Drs as I felt like I was dying inside and out. Name it I took it. Lexapro, mirtazapine, trazadone, doxipen, amitriptilyne, clonodine, thc, etc They said it would help me sleep and calm my system. It never worked for me. I was never depressed before and they never helped. I did not stick with the AD long, so I cannot say whether in the long run, it could have helped. But I never had depression, insomnia, anxiety...etc in my 5 decades. I never took meds, rarely even mutli-vitamins so AD was very scary and foriegn. My inner self 'knew' I was poly-drugged and I finally listened to myself come hell or high water. It's my journey and I don't know yours. There are ppl who thrive on AD and I'm happy for them. T. I did talk therapy, accupuncture, PT, hypnosis, etc. to try to save my mind. Some helped, but I don't know what. Now, therapy every few weeks helps. Time off all meds is the route I'm going as I tried many Dr's and their ideas.  I was criticized that my reluctance to take the meds was my problem. That I needed those meds. to get better, even for the short term. Well, I took them and never got better and they said because I didn't take them long enough, etc blah blah. They aren't for me and I work in the medical field. It's not good for my system right now, but meds from functional medical dr never worked either. The only thing was time so far. I slept 4-5 hours last night, so it's an ongoing journey of healing. It's getting better, way better, for me and you will too.

Edited 9 hours ago by [oc...]

[[ca...]]

28 minutes ago, [[o...] said:

carlos, I took it all. Trusting the Drs as I felt like I was dying inside and out. Name it I took it. Lexapro, mirtazapine, trazadone, doxipen, amitriptilyne, clonodine, thc, etc They said it would help me sleep and calm my system. It never worked for me. I was never depressed before and they never helped. I did not stick with the AD long, so I cannot say whether in the long run, it could have helped. But I never had depression, insomnia, anxiety...etc in my 5 decades. I never took meds, rarely even mutli-vitamins so AD was very scary and foriegn. My inner self 'knew' I was poly-drugged and I finally listened to myself come hell or high water. It's my journey and I don't know yours. There are ppl who thrive on AD and I'm happy for them. T. I did talk therapy, accupuncture, PT, hypnosis, etc. to try to save my mind. Some helped, but I don't know what. Now, therapy every few weeks helps. Time off all meds is the route I'm going as I tried many Dr's and their ideas.  I was criticized that my reluctance to take the meds was my problem. That I needed those meds. to get better, even for the short term. Well, I took them and never got better and they said because I didn't take them long enough, etc blah blah. They aren't for me and I work in the medical field. It's not good for my system right now, but meds from functional medical dr never worked either. The only thing was time so far. I slept 4-5 hours last night, so it's an ongoing journey of healing. It's getting better, way better, for me and you will too.

You sound like you have made a great deal of recovery. I am so glad for you. Very happy.  

Did you experience crippling anxiety and shortness of breath 24/7?

[[oc...]]

I'm in progress and like I said, fake it til you make it. It sucks but there is a level of acceptance that I must endure. As I type, there is electricity running down my left leg and I am watching my toes move up and down due to the muscle contractions. It sucks, it's scary and I'm in uncharted territory for my body. But what can I do? I did experience crippling anxiety. I experienced akathasia, like a crack addict in withdrawls. My coworkers saw me like this in Emergency room. It was scary and humiliating, but I hadn't slept for 5 days. Like I said, so much anxiety that I almost lost my career and family. I took medical advice and flew to the mainland to family/friends for a month and paid out of pocket for a mental health intensive OP clinic. I did everything that was suggested and then some. Did it help? I don't know. All I know is I didn't lack trying. No sob. But for me it has been muscular symptoms that are prolonged and enduring. I attribute the muscle twitching to internal gi issues and GERD like symptoms. If you goto ER for SOB, they will check your heart, ekg, pulmonary emboli, etc. The routine stuff. I went to ER 3 times, but wanted to go dozens of times unsure of who/where to turn to. I'm sorry you are suffereing, but you are doing the same as I did/do. I am searching for that someone with the exact symptoms as I have/had. And then, I say ah-ha! see that's it. But, and then what? I ask what they did and did they get better? I am reaching for that hope. Well, the hope is there. And there will certainly be a person with similar symptoms. And then what? You look strong and you are committed to getting well. Continue on and so will I. We will get better. I will find the letter I printed from a fellow benzobuddie, Faith. It is  helpful and mounted in my bedroom.

[[ca...]]

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

I'm in progress and like I said, fake it til you make it. It sucks but there is a level of acceptance that I must endure. As I type, there is electricity running down my left leg and I am watching my toes move up and down due to the muscle contractions. It sucks, it's scary and I'm in uncharted territory for my body. But what can I do? I did experience crippling anxiety. I experienced akathasia, like a crack addict in withdrawls. My coworkers saw me like this in Emergency room. It was scary and humiliating, but I hadn't slept for 5 days. Like I said, so much anxiety that I almost lost my career and family. I took medical advice and flew to the mainland to family/friends for a month and paid out of pocket for a mental health intensive OP clinic. I did everything that was suggested and then some. Did it help? I don't know. All I know is I didn't lack trying. No sob. But for me it has been muscular symptoms that are prolonged and enduring. I attribute the muscle twitching to internal gi issues and GERD like symptoms. If you goto ER for SOB, they will check your heart, ekg, pulmonary emboli, etc. The routine stuff. I went to ER 3 times, but wanted to go dozens of times unsure of who/where to turn to. I'm sorry you are suffereing, but you are doing the same as I did/do. I am searching for that someone with the exact symptoms as I have/had. And then, I say ah-ha! see that's it. But, and then what? I ask what they did and did they get better? I am reaching for that hope. Well, the hope is there. And there will certainly be a person with similar symptoms. And then what? You look strong and you are committed to getting well. Continue on and so will I. We will get better. I will find the letter I printed from a fellow benzobuddie, Faith. It is  helpful and mounted in my bedroom.

How long akatisia last??

I feel like my legs don't have the strength to breath with force. Such a weird feeling coming from my chest. Like total weakness

Edited 6 hours ago by [ca...]
I feel like my legs don't have the strength to breath with force. Such a weird feeling coming from my chest. Like total weakness