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Please help me, please!


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I am having serious problems reducing my dose of Clonazepam. Currently, I am taking 0.056 mg/day, but life is unbearable. I can’t sleep, my skin burns constantly and my hands constantly feel like pins and needles and they often go numb at night, I have muscle spasms and tremors all the time, I am horribly dizzy all the time, my heart races all the time, my skin is numb to light touch over my entire body, I have inner vibrations, tinnitus, noise sensitivity, light sensitivity, constant headache, losing coordination over my entire body, food sensitivity, hot/cold intolerance, POTS, a strong abdominal muscle spasm that happens every time I inhale, my skin is dry and feels like sand paper, I can’t experience pleasure, my eyes are very dry, I am having serious balance issues, I can’t sit still or relax, my muscles are wasting and ache all the time, as do my joints, and I have brain fog and it is hard to concentrate. These are but a few of what is plaguing me. I am afraid to continue cutting the dose, but I am also afraid to go back up in dose because I am over seven months out since I rapidly tapered off of about 1 mg of Clonazepam, then reinstated to 0.35 mg and began a slower taper. My horrible symptoms have only grown worse in time, and new ones appear as I cut further. I don’t know what to do now. I have a “benzo savvy” doctor, but he offers no solutions except to go up in dose. Perhaps, that is because there is no solution. I can’t envision living much longer like this, and I know there is much worse to come as I cut further. I have heard from some people who were in my situation, but would like to hear from more. Am I doomed to suffer for years like this? I can’t go on much longer with 1 hour of “sleep” per night in 10 minute increments. Please help me. Please help me.
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I am so sorry you are suffering.  Can you hold at this dose you are currently at to stabilize?  It sounds like your cuts have caught up and your body needs to adjust.  I know these side effects are absolute torture, they will get better in time I promise.

 

Time is what you need to heal. You will sleep again as the body adjusts.  You may have to hold for several months before your body is ready to dose off the rest.  Listen to your body, you will know when the time is right.

 

Hang in there, better days are coming..

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I sat at 0.1 mg/day for three months, but only got worse in time. I tried to updose to 0.15 mg/day at that point, but it did not help. I am afraid for my future. This is not living anymore. Only pain and suffering.
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How long have you been sitting at 0.056mg/day?

 

Is there a dosage that will keep you stable and functional? And then perhaps allow for a slower taper?

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So far, one week. I have been dropping 2 micrograms per week, for the last several weeks. If I hold, my life doesn’t improve either.
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[67...]

I'm sorry you're feeling so bad.

I have no advice, as I'm in the same situation that you are in, not from a rapid taper, but from 5 mg of versed that I was given during a procedure.

 

To me, try and hold and then go slowly down to zero.

 

I think the only way to feel better, is to get off these altogether.

 

You are very close and will feel better once you are off

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So far, one week. I have been dropping 2 micrograms per week, for the last several weeks. If I hold, my life doesn’t improve either.

Does your life get any better (functional and stable) if you increase dosage?

 

If updosing does not help, have you looked at crossing-over into a longer acting benzo e.g. Diazepam?

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I know updosing to 0.35 mg/day after my initial rapid taper did not help, so I fear I have to go back up to 1 mg or more to get some relief. This scares the hell out of me, and I don’t want to do it. That said, my life is completely unbearable right now. I don’t know if I should push on to zero or updose. I am very worried about my future.
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Sky, you are so overwhelmed and everything feels so dark. Can you try and get your mind on some positives? It could help. The agony you have right now will eventually be gone. And, you already have shown tremendous strength and determination to get this far.

 

Do you think reading some success stories would help? Give it a shot:

Success Stories

 

We will stay with you through this, you are not alone.

 

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Thanks for the success stories link. On one hand, they are encouraging. On the other, it is truly frightening that it took many people the better part of a decade to start to feel themselves, but not yet 100% healed. I don’t understand why benzos are still prescribed in the U.S., instead of being banned for most things like they are in France. It is all about $, no matter how many lives are ruined in the process.
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I am really pleased that you took my advice, and proud of you. I hope it gave you some distraction.  Do you think you could listen to some Claire weeks on YouTube? I turn to her all the time. She is passionate about recovery and always positive. I rely on her as part of my toolbox. She was from Australia, and has since passed. Some of her language is archaic, but you will get it. Her word for our condition is "nervous illness."  Her entire book is on this website. I am sending you to some shorter podcasts. Holly went through Benzo wd, by the way.

 

Short Claire Weeks talks: https://www.youtube.com/channel/UCZ-h2b3GGv7jxx_EBIUW8Vg

 

The big play list, including her entire book and podcasts: https://www.youtube.com/channel/UClU2QM8FZZ5sjoVxNT8NTIw

 

The folks doing the podcast have and some still are, going through the process of "desensitization," and "floating " to get through. Some are quite long. I suggest picking a short talks, some are just a few minutes long. Try a few of those and see if it helps.

 

If you want more, I suggest these 2 short podcasts.

I like this one for you for now: 

 

or this one:

 

I am going to stay with you. I want to walk with you through today with hope. I will have to sign off in a bit, but will check in tomorrow

 

The longer talks can come later. They are best when you are not so acute.

 

You are not alone

-Baddove

 

 

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I know updosing to 0.35 mg/day after my initial rapid taper did not help, so I fear I have to go back up to 1 mg or more to get some relief.

Your concerns are very real. Tapering symptoms can easily become protracted withdrawal symptoms. If you are holding and continue to get worse, then something has to change. You have to find a way to get functional and stable, and then work your way down very slowly. 

 

Have you tried multiple doses in a day? Or considered crossing over into a longer-acting benzo?

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Hey there,

I'm so sorry for your suffering :'(

All of those symptoms are basically WD. I did the same thing as I tried to taper (way too fast). My body was basically like "well, either go way up in dosage, or just get off" because it just gets so low.

But updosing didn't work for me at all. I went to a facility and they CTed me, and then gave me more drugs and it was a totally nightmare. But if I could have held and keep going down or crossed over, I know that would be the best option.

Whatever you choose... Hold, updose, crossover, or keep cutting....

It is all VERY hard to decide when symptoms are so strong! I feel your pain! But for me a CT was definitely 1000 times worse than the symptoms I had while cutting.

 

For a glimmer of hope though...I am approaching 24 months off and doing GREAT!!!!

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I have continued to cut my dose, and am down to 0.050 mg/day, but I am suffering terribly. I really want to be off of Clonazepam, but it is causing horrible neurological symptoms. My skin numbness is getting worse, and my left abdominal muscles spasm violently when I inhale. This makes sleep basically impossible. I am losing coordination, especially in my hands, and my muscles are weak and wasting away. I lifted weights all my life, and now I can hardly stand for long periods of time because my heart rate goes up by more than 30 bpm while standing. These are just a few of my horrible symptoms. Has anyone experienced this and completely recovered? I don’t want to live like this. It isn’t living, it is existing in a state of constant suffering. I need some inspiration to get me through these dark times.
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I am now at 0.050 mg/day, and am suffering horribly. My left abdominal muscle spasms strongly when I inhale, and as I cut it has been getting worse. Has anyone else experienced this? Will it eventually stop, or am I doomed for life? It makes sleep impossible, and I can’t take this much longer.
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I am now at 0.050 mg/day, and am suffering horribly. My left abdominal muscle spasms strongly when I inhale, and as I cut it has been getting worse. Has anyone else experienced this? Will it eventually stop, or am I doomed for life? It makes sleep impossible, and I can’t take this much longer.

 

Have you considered holding at 0.05mg for a few weeks to help you stabilize?

 

Muscle spasms are a common withdrawal symptom and they can last for a while .

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I have continued to cut my dose, and am down to 0.050 mg/day, but I am suffering terribly. I really want to be off of Clonazepam, but it is causing horrible neurological symptoms. My skin numbness is getting worse, and my left abdominal muscles spasm violently when I inhale. This makes sleep basically impossible. I am losing coordination, especially in my hands, and my muscles are weak and wasting away. I lifted weights all my life, and now I can hardly stand for long periods of time because my heart rate goes up by more than 30 bpm while standing. These are just a few of my horrible symptoms. Has anyone experienced this and completely recovered? I don’t want to live like this. It isn’t living, it is existing in a state of constant suffering. I need some inspiration to get me through these dark times.

 

Hey there, how are you doing now?

My neuro symptoms were off the charts!!! I had everything you listed in your original post. Most of my muscle spasms were in my legs but I had them everywhere. Had them so bad you could see them clenching and rolling non stop. I had major muscle loss and actually some even worse stuff that I don't wanna scare you with.

But to answer your question.... yeah, I freaking experienced it.

The suffering was inhumane.

I am a high level athlete and also lifted as well.

My body was destroyed....but I want to offer you hope....

I am 23 months and doing very well!

I am back to my sports and back to lifting what I used to before all this!!!!!!

 

Feel free to PM if you like :smitten:

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Thanks for the encouragement. I am really depressed at what these drugs did, and are doing, to my body. I hope to be able to exercise like before someday, but I am not optimistic right now. I still have to get off this poison first, and as you know that is no easy task. I find that the little sleep I get makes my symptoms worse. Did you experience that. I am truly frightened at what my future has in store for me.
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You shall get there someday, but it will take time. I never thought I would be able to taper from 0.35mg to 0.127mg, but I kept pushing. There is a light at the end of this tunnel, and the only way is through it.

 

Don't lose hope. There are so many stories of people suffering and then slowly things start to get better and eventually then are completely healed.

 

I wish I had never touched this stuff, and once I am off it, I would rather slap myself than even do a benzo. But for now, we have to fight our way through it.

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Thanks for the inspirational words, but I think that light at the end of my tunnel is the headlamp of an oncoming train. I cannot put into words my current level of suffering. For one thing, I can’t feel my skin, and my heart rate goes crazy when I stand up. I barely sleep an hour or two at night, and when I wake up (usually at 4am), my skin is burning and I am sweating and can’t fall back asleep even if I stay in bed till noon. I used to sleep like a baby, but now I never get sleepy tired. I am fatigued and feel terrible all the time, just not the normal tired. I have severe abdominal muscle spasms each time I inhale that make sleeping impossible. I could go on and on, because I have about 30 horrible symptoms. I can no longer eat most foods without symptoms getting worse, and for the past seven months I have been dizzy with no windows at all. I really no longer want to go on living, or I should rather say, existing like this. I really don’t.
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Have you considered any deep slow breathing exercises to help you relax and calm things down?

 

Have you thought about updosing a bit and perhaps crossing over into a different longer acting benzo (e.g. Diazepam)?

 

Have you considered about dosing multiple times a day? To see if that smooths things out?

 

What you are going through sounds horrible, and I would not view it stable and functional.

 

Here is a recent thread on the switchover to Diazepam:

http://www.benzobuddies.org/forum/index.php?topic=253240.0

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I am so sorry for you skyglider.

I truly am. I can so identify with were you are. My doc tried to taper me way to fast and I was in the same boat...  horrendous WD WHILE still on Ativan. It felt so hopeless when holding didn't work, and when updosing didn't work, and I couldn't get stable.

I am just so sorry as I (and others here) know really how awful it is.

 

Do you feel worse when you take your current dose? Or worse if you

skip it?

And is your current dose pretty low?

 

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I dont know what to say but i think error could be that micro dosage of benzo once you dont feel any effects could be way to small to be used for taper, as if your taking 1/10th of a milligram i cant imagine it has any relief properties, its like normal person who would take a sip of beer, and in theory that sip would have alcohol, but it would be so small to cause any effects, now it seems plausible that such a tiny amount could still rub on against gaba just to induce immediate withdrawal or rebound, as that would explain why one suffers so long and they dont get any better.

As i myself 6 weeks back jumped of 40 mg diazepam daily, first few weeks ive taken 20mg then 10mg once or twice a week, and went trough same on 3rd week i could not feel my body, any part i touched felt like i was touching someone else, after 4th week it went away, i still have plethora symptoms that come and go, but numbness lasted only a week, also i used benzos 10years or so, often in 2-3 times above normal dosages, so it really puzzles me to see people on prescribed dosages and fairly short periods go trough fire and hell, it could be just me, but think in often cases clinginess to keep using small dosage or dragging entire process into months makes general anxiety worse, as i know in my case before i started benzos anxiety and panic attacks got so bad, that everyday life was a nightmare, i could bring panic attack on myself just by having thoughts about it, and it would feel like torture for 2-3 hours raised BP excessive flushing to the point id look like my head was plunged into boiling oil, and to think that my normal would be feeling like that isnt great.

 

 

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Thanks for the inspirational words, but I think that light at the end of my tunnel is the headlamp of an oncoming train. I cannot put into words my current level of suffering. For one thing, I can’t feel my skin, and my heart rate goes crazy when I stand up. I barely sleep an hour or two at night, and when I wake up (usually at 4am), my skin is burning and I am sweating and can’t fall back asleep even if I stay in bed till noon. I used to sleep like a baby, but now I never get sleepy tired. I am fatigued and feel terrible all the time, just not the normal tired. I have severe abdominal muscle spasms each time I inhale that make sleeping impossible. I could go on and on, because I have about 30 horrible symptoms. I can no longer eat most foods without symptoms getting worse, and for the past seven months I have been dizzy with no windows at all. I really no longer want to go on living, or I should rather say, existing like this. I really don’t.

 

Hi Skyglider,

 

I'm so sorry you're going through this--it must be terrifying and frustrating. Keep talking to everyone here---even if we might not know the particular answer for what you're going through, we can all understand, and at least for me, that's been something that has kept me going during this struggle...

 

Regarding the possible problem and a solution:

 

It sounds like you never got stable on the dose from which you started to taper-- you reinstated at .35 mg K but you said you were taking up to 1 mg before that. Were you ever stable and functional on 1 mg?

 

When I did my second taper (see my signature), I reinstated at .75 mg, because that was the dose I took for only one day 7 months after my first taper ended, and that reactivated the benzo withdrawal syndrome in me (I had the same exact set of symptoms as when I stopped K before my first taper was reactivated). But looking back, I wish I had reinstated at 1 mg, because that was my dose for years. I'm convinced that this is why I never resolved my altered sleep architecture during and after the 2nd taper, even though I was functional and normal in every other way (no anxiety, no cognitive issues, no adrenaline rushes, no akathesia...).

 

Going back to the original dose is what my friend did. Over the years, he had taken 2 milligrams of K per day. After a successful taper, he started taking 1 mg of K-- just for a few days--in order to alleviate some withdrawal he was having from another med. At this point, he thought he could try just tapering from the 1 mg of K. However, his withdrawal symptoms did not get better, so he went all the way up to 2 mg of K, became stable, and successfully tapered all the way down to 0. He didn't have any issues during his taper, and he was careful to not take or eat anything that altered his plasma level of K or affect GABA A receptors.

 

Now I'm not saying this works for everyone, because I had another friend who  started taking .5 mg of K for 3 days (because of anxiety over an upcoming life event) a year after they successfully tapered off of 1 mg of K. In this scenario, they were able to stabilize on just that .5 mg and taper off of it in just three months.

 

(Both friends cut daily using liquid to increase the volume of the dose and make small, accurate cuts.)

 

Another strategy is to slowly increment upwards to see if you can get to a point where you are stable without going up to the full 1 mg. I tried do this when my second taper crashed at .045 mgs, but I was never able to see if it worked because I was given phenobarbital at an ER visit, which threw me into really bad w/d. Unfortunately, I had to go back up to .75 mg and start all over again, but luckily, I became stable and was able to taper off that amount. 

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