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8 months out, first post


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Reposting original, long version:

 

I c/t in January. I was prescribed klonopin for insomnia in 2004. I took 1 mg at bedtime, never craved it, never thought it caused a problem.

In 2004, I was a copy editor/ page designer at a newspaper, and my odd schedule of 3 pm to midnight finally caught up with me. I started struggling with insomnia. I made various sleep hygiene improvements but after several months the lack of sleep started hurting my work life. My doctor, whom I really liked and trusted, prescribed Ambien, which worked well for a few weeks and then stopped working. She then prescribed klonopin, saying the "one risk" was "addicition," but it didn't happen to everyone.

It put me to sleep, and I took 1 mg every night. I never, ever thought it caused any problem whatsoever. My wife, who was always aware of my mental state, also never suspected klonopin. As an ex-smoker, I knew what addiction felt like, and I had no love for, no craving for, and no fear of klonopin. It was a pill I took to make sure I slept.

In 2008 I left the newspaper job after becoming exhausted by a new and unwelcome companion - anxiety. I started working for myself in a much more relaxed environment. But soon the anxiety crept in to the new job, and the rest of my life, as well. 

In 2009, I started experiencing severe pain in my left elbow, and it quickly grew so bad I had to stop playing guitar, which had been a big part of my life since I was a kid. I declined surgery, which was offered by several doctors. Nerve entrapment in the elbow, they said. I'm so glad I did not have that surgery.

In 2011, the anxiety had grown bad enough that I brought it up to my GP, who prescribed an antidepressant.

And that's when I went completely crazy. On klonopin and anti-depressants together, the anxiety turned into outright terror, all the time. I became hostile, aggressive, always panicked. My wife pointed out to me that I was hajving trouble with memory in January of 2012 - as in, I did not remember entire days, conversations, weekend trips, movies etc. I had always had a superb memory. With the anxiety reaching terrifying levels, increasing agoraphobia and the new problem of amnesia, I made another huge mistake. I sought mental health treatment. I was diagnosed with bipolar.

I bought in. I was terrified. I was losing my mind, out of control, emotionally shattered, confused, unable to remember things - and here was an explanation and at least the possiblity of a fix. No one said it would be easy, so it didn't in any way sound "too good to be true." I bought in. I always took my meds. I never missed therapy. I changed my diet, my exercise habits, my sleep habits. I went to DBT and CBT classes. I started mindfulness meditation. I bought in.

The klonopin and then the other meds made me incredibly stupid. The cognitive effects were stunning. I read 20-25 books a year before the bipolar label, even on klonopin for the first few years, but from 2011-2015, I read one book - a young adult novella - because I was too cognitively damaged to read. I couldn't remember anything. I was so mean. My tone of voice, my mannerisms, my posture, everything changed, felt as if all were out of my control. I woke up every morning absolutely terrified. I broke things, threw things, screamed ( I never physically hurt anyone, thank goodness). 

Every time the experts treated me, everything got so much worse. I lost all hope, was filled with despair and a rage that knew no limits.

Until finally, in the hospital involuntarily 9 months ago, I somehow saw through the cognitive fog and understood that I had to get to baseline - I had to stop all of the medications, the treatment, everything, because whatever the cause of my problems might be, the meds and the treatment were clearly not the solution.

And so I stopped it all. I have not taken a drug or a vitamin or a supplement or anything since January. Things were really tough at first, but within a few days I knew that the drugs - most importantly klonopin, the one I had taken the longest - were the problem. I knew because the acute withdrawal was just an intensified version of the way I had felt for years (8 years of tolerance withdrawal). The morning panic that I felt when I c/t was the same panic I had been feeling since 2008, just somehow more intense. The unbelievable pain I felt in my neck and elbows and hands - I had been feeling it to some degree for years. The sleep issues, the anger, the fear, the paranoia, the inabliity to problem-solve, the intestinal upsets, the bloating, the aching knees and feet, the ocular migraines and severe headaches, the extreme sensitivity to light and noise, the tactile sensitivity, and the PHANTOM SMOKE SMELL that had followed me around for years - all these withdrawal symptoms had come and gone, separately or togother, for years. They did not start together, and they did not in any way seem related, and the experts always had an explanation - aging, "after all you are over 40 now," side effects from one of the meds (but not klonopin, of course), "the natural course of your illness." I struggle with feeling like a fool for believing them - every single thing that I now know was caused by the drugs they prescribed (mostly klonopin), they convinced me was actually caused by "my illness."

During acute withdrawal, I woke up after 2 hours of sleep covered in sweat and terrified for months; my neck hurt so bad I cannot describe it - I thought maybe I had fractured my spine; elbows and hands would swell and hurt like the muscle and skin were being slowly peeled off; knees started to hurt the same way; intestinal pain became unbearable; I was racked by waves of vomiting; I could not control my thoughts; I struggled to go out in public; I wept for hours at a time; I often did not have the energy to get out of bed for entire days.

I found this site and other sources of information about benzos and benzo withdrawal within days of c/t, and since I had already been experiencing all of the withdrawal symptoms, I was able to accept it and grab on to the tiny little speck of light at the end of a very long tunnel. Knowing that what was happening then and had been happening for years was klonopin withdrawal (tolerance and now acute) and not the downward spiral of my brain, not a lifelong, ever-worsening mental illness - knowing that lifted the despair even while I felt so horrible, and the suicidal thoughts that had hounded me for years ended immediately. There was still some crazy behavior - as late as March - and terror and anger and confusion and crazy thoughts, but no suicidal thoughts and no depression once I knew that it would end - I had believed for a long, long time that it would never end. The experts had convinced me that the problem was my brain, and that it would only get worse.

The digestive issues ended very quickly, within a couple of weeks of c/t. The sleep issues resolved, for the most part, within six weeks. After reading only one book for four years, I read 6 novels and two heady philosophy/psycolinguistics tomes between January and March. Pain continues even now, though I have had a couple of pain windows (I went a week in July with NO pain - the first time in 8 years). The ever-present phantom smoke smell made its last appearance in June. My thoughts turned a corner in July, and my thinking continues to improve. I don't have terror anymore. I don't feel ANY anxiety, since maybe late July or August. My sleep is better some times than others, but even at the worst times I get a minimum of 5 hours sleep, since April I think. Sometimes I still have obsessive/racing thoughts, but it's no longer all day every day, and I recognize it for what it is and am able to be patient with myself. I never feel out of control of my thoughts or actions. The rage stopped/downgraded to anger in May, then down to irritability over the past couple of months, and it is now much less frequent and much, much easier to manage or shut down.

My experience has really rocked my therapist's world. He has never seen anyone be so crazy, and then stop all medications and get so much better. Over the summer he started pumping me for information, and now he is doing everything he ethically can to get a half dozen other clients to stop taking benzos - "They all have the same anxiety, the same sleep problems, and the same nerve pain - and they all sound the same when they talk about their lives and their futures." That's what he says. I think he has become a militiant anti-benzo crusader.

My wife has stood by me all the way, though it has of course taken a toll. We will be OK, but it's hearbreaking how much this has hurt both of us.

When I found this site, I could not participate. I could not even register - literally, I tried and failed and was cognitively so damaged that I could not figure out what I was doing wrong. I would not have been able to participate even if I had joined. It took until now to be able to type this much, to tell the truth.

As a guest to the site, I could not see anyone's name, so I cannot thank anyone specifically, but reading success stories here, and the stories of struggle, and the heartache, and the comeraderie and support, and the kind words and wisdom - all of that meant so much to me. I can't imagine how I would have gotten through this without you people, whose usernames I do not even know. Thank you.

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Hey, I love this post, and I'm so sorry for all the shit you went through because of the meds..

 

But didn't you have a longer, different version of the above?  I originally read the longer, more detailed story, but somehow it's not here anymore?  Do you have that version saved, and maybe you could repost it?

 

Thanks, and congratulations! 

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Thanks Eric, I have reposted the long version. I was worried it was too long. Just feeling insecure - I haven't been able to write more than a few sentences in years, and I think putting the story down in black and white made me feel a little vulnerable.
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Oh my gosh, you've really been through the mill.  Thankfully, you found out what was causing all the problems.  I had a lot of the same feelings...  the degree of anger was unfathomable.  Like you, my doctor wanted me to take more.  I'm so glad you discovered it was the benzo's.  I, too, was prescribed it for something simple (Restless Leg Syndrome) and was blindsided by the ordeal.  Thank you for coming online to tell your story.  I can sure relate with not being able to think clearly enough to write or even read.  Wishing you the best of luck and a bright new future.  It's wonderful that you saw improvement so quickly.  It does my heart good to see your wonderful story.
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Thanks Eric, I have reposted the long version. I was worried it was too long. Just feeling insecure - I haven't been able to write more than a few sentences in years, and I think putting the story down in black and white made me feel a little vulnerable.

 

Thanks Vahday..

 

It's so much better this way - you have a story that needs to be told, and I think you've written it very well.  I am so glad you're off all the "medications".  I found it interesting that the therapist hears the same story from many different patients on benzos.  It's a terrible thing to have been through such an awful wringer just cause we took benzos on a doctor's advice.

 

I too, have been through a lot of "health problems " because of clonazepam and I'm just finishing a taper off an anti-psychotic I was put on while in tolerance withdrawal.  It's immeasurable the amount of loss we've experienced cause of this, but all I'm trying to concentrate on is making tomorrow much better and not wasting any more time (like the 10 years dealing with benzos), and I'm sure that's what you're doing as well.  I'm real glad your wife stuck by you and I wish you all the best in your healing and new life.  Thanks again for sharing your story with us!  - Eric

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I almost didn't read this...what a mistake that would have been!!! 

I am very glad you wrote and posted your story...yes it is long, but so is your journey!!

I relate to every aspect of your experience, from steps leading to poly drugging, mis-diagnosis, an inability to read, insomnia, etc, etc, etc!!!  Reading has always been my go-to activity and not being able to do that was debilitating..although when I did read, I couldn't remember the story!  TV shows?  Forget it...I turned to reruns of reruns because I didn't have to watch, I could just listen off and on.

Your spouse is wonderful!!!

Now that you are better, I hope you post to help others make it through (like me!)!

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you have timeline near mine.8 months .i have problem about

knees pain and cracking all of my joints.how about your knee pain right now.i m curious for someone who have problem like me.tell me your details.thank you.

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you have timeline near mine.8 months .i have problem about

knees pain and cracking all of my joints.how about your knee pain right now.i m curious for someone who have problem like me.tell me your details.thank you.

 

Sandeetoro, I'm so sorry about the knee pain, I know it's rough. Knee pain is actually fairly new for me. During my long tolerance withdrawal, the worst physical symptom was elbow and arm pain. I could often barely use my left arm. Strangely, in December, the pain switched completely to my right arm after 6 years! That was part of how I figured out that it was not an injury (despite several doctors' confident claims) and eventually that Klonopin was causing it. After c/t, I had absolutely debilitating neck pain, and then both arms started hurting to the point I could not type, write, carry anything over 5 pounds, twist off a bottle cap, tie my shoes, etc. The pain slowly lessened, but it still comes and goes.

The knee pain was very off and on and minor until well after c/t in January. In late June, I did the most active thing I had done in a while - I went for a rails-to-trails bike ride. I fell off the bike and bruised my right knee. A week later, when the bruise was healed, the nerve pain I had felt in other parts of my body moved to my knee. I had it x-rayed, etc, and there is no injury. It feels exactly like the pain that was so bad in my arms, and it comes and goes and moves around a little, so I know it's withdrawal nerve pain.

Before this experience, I would have said this sounds ridiculous - too much of a coincidence that I injured the knee and then the nerve pain moved in. But I have learned that nothing about this process makes sense. My strategy is simple - if I suspect it might be withdrawal, I treat it as withdrawal.

I'm having a pain wave right now after a couple of months of little to no pain. My neck and arms and right knee hurt badly the last few days. Knowing that it is just nerve pain - not structural - helps me push through it. I force myself to walk, even hike, because I know the pain is just my healing brain creating "false" signals, and I am not going to cause damage just by pushing myself. It's harder to push through arm pain than knee pain for me, but I'm making myself type and play piano as much as I can, trying to rebuild strength in my hands and arms even while they hurt.

Having said that, I should emphasize that the pain now is nowhere near as bad as it was during tolerance and acute. If the worst I experienced then was a 10, then the worst I ever experience now is a 5 or 6.

The intense cracking of joints for me happened very briefly, maybe over a one week period in January. Everything cracked with every move I made, especially in my neck, shoulders and lower back. That hasn't happened at all since then.

I hope this helps. I know reading about experiences and symptoms similar to my own makes me feel less isolated.

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Hi Vahday,

 

I'm so glad to hear you are doing much better and I would like to wish you all the best!

 

My timeline more or less mirrors yours, I'm 7 months and 1 week CT off extremely short use (maybe 7-10x total in whole life). I'm struggling most with sleep and cognitive issues. As someone who was the most avid reader I know, it is a struggle to read single paragraphs let alone a book. Really heartbreaking for me. It's a daily struggle beyond words to get through work and just try to deal with horrid cogfog/dp/dr. It's hard for me to process or learn anything whatsoever, making work and life very hard.

 

May I ask how you are doing in these areas? I still haven't gotten a "window" yet. I'm praying to whoever will listen that the whole "we all heal" thing isn't just a line a patter used around here for people to reassure themselves and one another but honestly at times it's just how I feel, not a knock against anyone here or this forum whatsoever, you guys are the only hope I got. I am amazed at the displays of strength and character I find here. I really feel love for all of you guys at BB, from the absolute bottom of my heart. But man. The extent of the cognitive damage just over 7 months out is absolutely unbelievable. Social interaction and work are daily battles of unbelievable magnitude. I don't know when/if I'll ever be able to date again. Just having a real hard go of all this :/

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Verax, I'm sorry you're struggling with cognitive symptoms, I know how frustrating and scary they are.

I saw vast improvements in some cognitive symptoms immediately upon my cold-turkey. Other cognitive problems gradually improved over several months, and still others haven't improved much yet. I was in really bad shape during tolerance withdrawal. I could not comprehend anything that I read, could not follow instructions, and I had holes in my memory that often erased several days at a time.

As soon as I c/t, the amnesia stopped, but short term memory took a couple of months to start slowly improving.

Within days of c/t, I could read and comprehend on a basic level. It took all my concentration at first, but it was so incredible to be able to stimulate my brain with input. I read voraciously. It took about 4 months before reading and writing felt like something that came "naturally."

Within a couple of months I could understand and have an interest in what other people had to say. This was really impossible during the last two years I was on klonopin. But for the first 5-6 months after withdrawal, I struggled to speak in a "normal" way - My thoughts were very disjointed and my words came out in ways that were confusing and frustrating for listeners. Socializing is possible now, and getting a little easier, but I still struggle with it and I get mentally exhausted very quickly around other people.

At about 6 months, I became much more able to focus my thoughts. That's when I started to pick up on subtlety and subplots, nuance and metaphor. My critical thinking skills, long dormant, started coming back, though not 100 percent yet.

Long-term planning and complicated projects continue to be very challenging. As soon as I c/t, I was able to complete many simple tasks that I hadn't been able to do for years, but still I struggle with anything that can't be completed in a short period of time, anything that doesn't have a straightforward to-do list, anything that has a lot of variables or requires improvisation.

As far as work goes, Verax, I am extremely fortunate to be able to do some freelance work on my own.

One thing that might be encouraging: The cognitive turning point for me was really early July - but I did not see that until mid-September. If you had asked me in August how I was doing cognitively, I would have said I may never get better, when in fact I was already healing and just didn't know it yet. I'm never really aware that things are getting better; I'm just suddenly aware that something else has gotten better. This will happen for you, hopefully soon.

If I didn't answer your questions, let me know and I'll try again.

 

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Thanks for your comments When, Sickdo, Choco, Frieda, Eric! You are the first fellow-travelers I have communicated with during this ordeal. It's nice to know I'm not alone as I start putting pieces back together.
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