Jump to content

Losing coordination and ability to use muscles


[Sk...]

Recommended Posts

I have been continuing to taper despite horrific withdrawal symptoms. Recently, I have made it down to 0.044 mg/day of Clonazepam in a liquid titration, however, my symptoms are off the charts and continue to deteriorate. I have severe burning skin, I can’t feel light touch over my entire body and skin feels like rubber and sand paper. I have abdominal spasms that make sleep impossible, I have been dizzy for eight months, I have tinnitus and am sensitive to noises, I am light sensitive, I have a lot of muscle spasms, twitches and tremors, I have inner vibrations, I developed POTS, my heart races, etc. The list goes on and on. However, what truly frightens me is that I am losing the coordination and the ability to use my muscles. Please tell me that this is not permanent and that people have recovered from this. Sometimes if I go to rub my nose, I end up poking myself in the eye. I feel like my life is already over. Also, am I doing permanent neurological damage to my CNS by continuing the taper? I really want to be free of this horrible poison, but I feel hopeless and trapped in benzo prison. Please advise me based on your personal experiences. Please help me.
Link to comment
Share on other sites

Skyglider -

 

Have you gone to see a neurologist? Did they run the full battery of tests and exams? Was anything discovered? Did they recommend anything to sort these neurological issues?

 

Do you have any symptoms that have improved? Or has everything gotten worse?

 

I had dizziness and it went away. I had the occasional tinnitus and it went away. I had eye muscle twitches and it went away. I had inner head vibrations and and it went away. I still have the occasional muscle twitch and paresthesia, but I don't pay attention to it anymore.  I still have the occasional heart racing, but I don't pay attention to it anymore.

 

You are down to an extremely low dose, and it some cases folks have even jumped off this dosage.

Link to comment
Share on other sites

I feel like my life is already over. Also, am I doing permanent neurological damage to my CNS by continuing the taper?

 

Have you considered holding at this dosage for a few days to see if the situation improves in any way?

 

Link to comment
Share on other sites

I don’t know anything about the tapering since I c/t after 5 months of taking 0.25 mg daily of Klonopin. But I lost coordination in my legs for awhile. I was stumbling and also felt that my gait was slow and cumbersome and just not right. I also had a ton of muscle weakness and now muscle pain. Everything has improved if that helps you feel better. I did have to have an MRI and a lot of blood work to rule out other issues but everything was normal.
Link to comment
Share on other sites

Hi All,

 

I saw two neurologists, and they don’t have a clue about benzo withdrawal. I also had an MRI of my brain, and it came back normal. I find if I hold the dose, things don’t improve at all, and just get worse. In fact, I held at 0.1 mg/day for three months, and my condition just continued to deteriorate. I really can’t take this anymore. I suffer around the clock and have brutal insomnia. I wake up every night after an hour or two of fragmented sleep at 3 am with burning skin, and cannot fall back to sleep afterwards, even if I stay in bed till noon. I no longer have a life worth living at this point. You say my dose of 0.044 mg/day is low, but it is equivalent to 0.088 mg of Valium, and that is not considered to be a low dose by Ashton. Every time I cut 0.002 mg off the daily dose, I feel worse a day or two later. I am afraid to jump from here, since I think it would go finish me off with a seizure, or I would become psychotic and end up institutionalized. Thoughts?

Link to comment
Share on other sites

I wish I could help you. I felt like I was dying for months so I know what you’re going through. None of my doctors believe benzo w/d is real either. I have found that walking everyday has really helped me. I know that’s not much, but even on days my body felt awful I found that a walk really helped. As far as the insomnia, I’m still struggling with that as well. I suffer with air hunger at night also, but have found that listening to bodyscan mediations on YouTube help me relax and sometimes I’ll get 30 mins of sleep after listening. On bad days I may take 4 or 5 hot baths a day. I know the anxiety is relentless during w/d, I’ve never experienced anything remotely like this. I really hope things improve for you. Sorry I can’t be more help. Hopefully others will know more.
Link to comment
Share on other sites

You say my dose of 0.044 mg/day is low, but it is equivalent to 0.088 mg of Valium, and that is not considered to be a low dose by Ashton

 

It would be equivalent to 0.88mg of diazepam. Ashton says "In any case the 1mg or 0.5mg diazepam per day which you are taking at the end of your schedule is having little effect apart from keeping the dependence going. Do not be tempted to spin out the withdrawal to a ridiculously slow rate towards the end (such as 0.25mg each month). Take the plunge when you reach 0.5mg daily; full recovery cannot begin until you have got off your tablets completely."

 

I would suggest that you seek a benzo-aware doctor help guide you. My humble opinion is that you should consider crossing over onto a longer-acting hypnotic, which can offer you some sleep.

 

Link to comment
Share on other sites

I often walk 2 miles per day, even though I feel terrible. I used to jog 5+ miles and lift weights three x per week, but now I am a basket case. I feel as if I have aged 30 years over the last eight months, and I fear I will never recover. I chose my name as skyglider because I have a paraglider and a gas powered fan that allows me to take off from flat ground. I have flown as high as 11,400 feet above the ground with it in 2019. Now I fear I will never be able to do that again. I am really depressed by this medically induced tragedy to my body. 
Link to comment
Share on other sites

Hi Darkarchon,

 

I did seek out a “benzo-wise” doctor, and find him to be less than useless. First, he wanted to give me more drugs because I am depressed about what the benzo did to my body and mind. Fat chance of that. Then, he wanted to switch me over to Valium. I tried, but couldn’t tolerate it, so he agreed I should continue to taper with Clonazepam. When I told him about my brutal symptoms, he said I should go up in dose....after six months of cutting. Quite honestly, there is nothing he, nor anyone else can do to relieve my suffering. Either I will heal in time, or so will die trying. Unfortunately, it looks like the second option is happening at this point in time. Like so said, I am really afraid of jumping completely off from such a high dose. My CNS is completely destabilized, and might never recover, even if I continue a slow taper. That said, my life is in tatters, and I fear I will lose my job soon if things don’t improve in short order. Given I am still trapped on the drug, I don’t see wuick improvement happening either. It is a struggle for me to face the day every single morning. I hate my life of constant pain and mental suffering. I took that poison to get a little sleep, and it has turned into a death sentence. How on earth can those stupid doctors prescribe benzos for sleep when they do so much damage and coming off them gives you horrible insomnia much worse than baseline. The medical community is really negligent in that respect. Things need to change. However, I can’t help but feel that it is way too late for me now. The damage has already been done.

Link to comment
Share on other sites

You will heal from this in time, I know the slow process is incredibly frustrating but I’ve found that after going through this I just feel so grateful for every new day, even days filled with symptoms. I try not to get depressed about this struggle anymore because I recognize that I needed to re-evaluate some things in my life. Now I just focus on appreciating all the life that is going on around me and know that this set-back is just a new challenge in my life that I have to accept and not fight so that I will be a stronger more empathetic person. Struggles make us more, I believe, not less.
Link to comment
Share on other sites

You say my dose of 0.044 mg/day is low, but it is equivalent to 0.088 mg of Valium, and that is not considered to be a low dose by Ashton

 

It would be equivalent to 0.88mg of diazepam. Ashton says "In any case the 1mg or 0.5mg diazepam per day which you are taking at the end of your schedule is having little effect apart from keeping the dependence going. Do not be tempted to spin out the withdrawal to a ridiculously slow rate towards the end (such as 0.25mg each month). Take the plunge when you reach 0.5mg daily; full recovery cannot begin until you have got off your tablets completely."

 

I would suggest that you seek a benzo-aware doctor help guide you. My humble opinion is that you should consider crossing over onto a longer-acting hypnotic, which can offer you some sleep.

 

not to sound harsh but this is very accurate, getting twisted in benzo withdrawal after 4 months usage, where one goes into taking micro dosage which can be filler or residue for a year, would turn into extended addiction withdrawal, i cant imagine many people would feel 1mg diazepam in any sort of way, but once we talk 1/10th of that its mad. i can see how taking minimum amounts daily, for an extra year, then reading horrors online while basically being on this non existent minuscule dosage could snowball into avalanche of wd symptoms. as in all honesty after 4 months imagine sudden jump would been effective way out, sticking to micro dosage which prob irritates gaba for extra years duration sounds like extending suffering unnecessarily, i can see how it would happen with reading all the horror stories online and sudden belief to take it slow, but if getting caught in belief that tiny mg makes a difference it could lead to worse things. sounds like you have decent support and def wont advise anything but ask docs to help you with alternative meds would be a way to end this cycle.

Link to comment
Share on other sites

I did seek out a “benzo-wise” doctor, and find him to be less than useless. First, he wanted to give me more drugs because I am depressed about what the benzo did to my body and mind.

 

What drugs did the doctor want to give you? Could these have eased some of your symptoms while you continue tapering/withdrawal? Perhaps allow you a good night of sleep?

 

 

 

Link to comment
Share on other sites

He wanted me to take antidepressants, which are known to cause insomnia. I also tried trazadone for sleep, and it was horrible. I tried Mirtazapine as well once only, because when I got up to go to the bathroom in the middle of the night, I couldn’t move my arms properly. I had enough with all these mind-altering drugs that can do permanent damage in a very short amount of time. I did not realize the damage benzos do, or I never would have taken a single pill. I fear the brain damage it has caused will never be fully repaired in time. I am besides myself for having taken any of that poison.
Link to comment
Share on other sites

All of us have to accept that we took this poison, and we are all working towards getting out of this situation.

 

Do you have a plan to jump at some point? Or do you want to walk you way down to almost-zero and then take the tiny hop to begin full healing?

Link to comment
Share on other sites

Hi skyglider,

 

I'm so sorry for your suffering!

I know the terror as I had/have the same after just a few days use of valium.

 

For me it's not just the muscle lost it's physical coordination but also the brain not sending the right signals. For example, when I try to open the door, I would miss the door knob not only because my arm/hand is weak, but my brain telling wrong information about the location.

 

This happened since my early days taking valium into tapering and continued post tapering. It is the most horrifying sx to me and I call it paralysis. I had it to my hand, arms, legs from valium, it improved some about 6 month post taper, then entire left side of me after covid infection.

 

I would think it should have improved more if not for covid. So please keep the hope and be very careful not to get setbacks by anything ( I have extreme sensitivity to almost everything which constantly set me back everyday)

 

I

Link to comment
Share on other sites

He wanted me to take antidepressants, which are known to cause insomnia. I also tried trazadone for sleep, and it was horrible. I tried Mirtazapine as well once only, because when I got up to go to the bathroom in the middle of the night, I couldn’t move my arms properly. I had enough with all these mind-altering drugs that can do permanent damage in a very short amount of time. I did not realize the damage benzos do, or I never would have taken a single pill. I fear the brain damage it has caused will never be fully repaired in time. I am besides myself for having taken any of that poison.

 

Skyglider, Mirtazapine did same to me and in addition I could not walk without taking support from the walls. This happened about 4 years ago to me.  I also had issues to use my hands properly stiffness and the same thing as described earlier. If I for example tried to use door handle my brain gave wrong signal and it was difficult. It was also challenge to cook food etc. Now 3.5 years off things are much better. Those symptoms slowly vanish piece by piece over the time.

Link to comment
Share on other sites

I have had all these symptoms off and on and most recently started with dizziness and nausea. I have opted to hold my taper until this resolves. My guess is your body is trying to stabilize.  It is not uncommon to feel all the symptoms listed as you taper.

 

My suggestion would be to hold until you feel better and then tackle the last of taper.  You are very low on your dose so that is why your symptoms are presenting more intensely.

 

Hang in there, it is temporary!

 

 

Link to comment
Share on other sites

I tried holding at 0.1 mg/day for three months, but things just got slowly worse. I want to be off this poison, but my body won’t let me stop it. Every time I cut a microgram or two, I suffer badly. I really don’t think I will survive at this rate. My sleep is pretty much nonexistent at this point, and I never get sleepy tired anymore. I truly fear for my future.
Link to comment
Share on other sites

Just want to say that I had ALL of what you are describing.

So bad that I couldn't lift my limbs more than an inch, had to be fed , bathed, wiped, and in a wheelchair. I required 24 hour care. No joke.

Lost my ability to walk...for months. Docs were sure I had a serious neurological disease.

I know it is horrific and scary as shit, like nothing else you have ever been through! I know you are thinking it is impossible for it to be this bad :'(

Just want you to know....... I survived it.

I am back to my athletic self!!!!!

I am 2 years off now.

Link to comment
Share on other sites

Thanks for sharing your story. It is both comforting, and frightening at the same time. Comforting in the sense that you recovered and are back to your former self. Frightening in the sense that you had all those horrible symptoms. Did your symptoms present while you were tapering, or after you finished tapering? I can see things getting very bad for me, based on what I am experiencing at my low dose. I am also 59 years old, so healing will take me longer. I imagine you were much younger when this happened to you, correct. Needless to say, I am scared to death about my future, or lack thereof. What do you think my chances are of making a full recovery like you did?
Link to comment
Share on other sites

When I was in tolerance(and didn't know it..) I was literally crawling up the stairs or shuffling when I walked. Soon after I finally figured out it was the benzos. After jumping movement came back well for awhile. Then I went through his phase of healing where i was very discoordinated, and then it faded to where it came and went. I also had some muscle and ligament tightening issues, where walking was difficult and painful (symptoms mostly one sided).

That is basically gone. this stiffness has moved to my upper back area now - but I know in time it will go too.

 

Just so you know you're normal and it fades. If it revisits don't freak out - its just a visit ;)

Link to comment
Share on other sites

[47...]

I did a c/t, and had a lot of coordination and tremor issues.  I literally bumped off the hallway walls when I walked - I couldn't hold a straight line.  I also dropped things a lot.  And I totally get the poke your eye while trying to rub your nose thing.

 

These are all pretty normal withdrawal symptoms.  You've continued to push thru your taper even when symptoms got bad.  I think that's why your symptoms have gotten so nasty.

 

My coordination issues and tremor are now long gone.  I'm sure you'll improve.  I think it might be wise to not make any additional cuts or jumps for a while.  Give your body a chance to catch up.

Link to comment
Share on other sites

I'm so sorry to frighten you, it's just that I remember how horrible it is to feel like "there is no way to survive this, I cannot make it"

I was like that every second and minute, thinking how is it possible to be this bad and this much pain and agony for so long. I know it's scary....but our bodies are amazing and can endure WAY more than we think.

I totally had symptoms while trying to taper....but heres the deal;

My doc was tapering me WAY to fast. My first WD symptoms while still on were: numbness and sandpaper skin mostly left side of body, then my knees, then the bouts if muscle weakness where I couldnt get off the chair or couch, insomnia, nausea vomiting, dizziness, bp/hr stuff, vision and ear stuff. All while still on Ativan.

I believe had I done a crossover and then a proper taper maybe it would not have been so bad? Maybe?

Because I was rapid WD, then given loads more benzos and drugs and then just CTed all at a facility.....well that is why I was so screwed. It was the worst thing they could have done to me.

So we cannot compare really.

But you are at such a low dose, I think if you keep going at the rate you are...you are just gonna suffer all the way down.

It is VERY difficult to know what to do in your scenario, it will all suck, it's just trying to figure out a way to make it less sucky

 

I always believe your chances are good to fully recover, and I say that because for myself, I consider mine to have been horrific and I made it, but also because there are SO many others who have as well!!!!

Try not to give up hope!

 

Also, I am in my early 40s, so not your age but also not super young either!

Link to comment
Share on other sites

I cut again to 0.021 mg taken twice a day. Now, my toe tips have gone completely numb, whereas before they were only partially numb. Am I doing permanent damage to my central nervous system? I am afraid. How will I be able to complete the taper if I am deteriorating neurologically so quickly? What are my options at this point? I don’t want to go back up to high doses, I really don’t. Anybody else experience these horrifying symptoms and recovered? I really don’t want to live anymore like this. I really don’t. Please talk to me.
Link to comment
Share on other sites

×
×
  • Create New...