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Help please, 10 weeks off Klonopin and insomnia creeping back


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I have read this site for two years not but have rarely posted:) I am hoping for some encouragement to keep me from even thinking about reinstating on klonopin. I am not there yet, but my history with these terrible drugs is that I reinstated when my insomnia returned several times in 2018. Currently I have thrown all benzos out of the house so I won't be tempted in the middle of the night.

 

I have been doing fairly well with sleep since I begun my slow liquid taper in July 2018, clocking in a few sleepless and little sleep nights each month where my sleep eventually returns to somewhere between 4-6.5 hours. Prior to this week, I had not had a zero sleep night Since October of 2018. Over the past month, I have been falling asleep easily and sleeping around 6 hours every night, which I am was very happy with. Unfortunately on Thursday after some things happening during the day that caused my anxiety to shoot up I was unable to sleep at all. I know there are people here who can relate to the zero sleep nights, they are not fun. The next day I went for an appointment with my sleep psychologist (who gave me all of the right advice) and she said I would sleep that night. I did sleep that night (Fri) out of complete exhaustion, about 7 hours (a lot for me). Last night (Sat) I felt tired at my normal bed time and when I got in bed the anxiety came back and I couldn't sleep. I tried all of the techniques I have learned in CBTI but nothing helped so I caved and took Simply Sleep (Tylenol PM with out the pain reliever.) I ended up sleeping about 11:30 pm-4:30 am (I usually 'sleep' from 9:30-4:30 am on a good night.)

 

I cope pretty well the days after bad sleep nights and do all of my normal activities but I am struggling with the thoughts that my insomnia is back and I am going to be in the spot where I was when this all started. I also do not want to take simply sleep at all but I struggle with taking it and getting a few hours of broken sleep, or not taking it and risking multiple no sleep nights and slipping back to where I was mentally. I can't figure out if this is a wave from my withdrawal, my sleep anxiety returning or both. I have worked so hard to make progress on my sleep doing everything 'right' during the day and don't want to start slipping back into the place where I have been in the past when I reinstated. It is almost easier to cope with the no sleep nights when they are happening semi-frequently. I tell myself that my body will sleep when it needs sleep, but it is hard to believe that I don't 'need' sleep on the nights I get zero hours. When I have had a long stretch of good sleep and it comes back, I fall into panic mode. I appreciate your thoughts and support.

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Sorry for all your sleep issues.  If I am reading your signature correctly you did 3 tapers and 1 cold turkey.  There is anecdotal evidence that suggests repeatedly using and then tapering or going cold turkey from Benzos can make subsequent withdrawal experiences worse?

 

Sleep anxiety is really common especially after you don't sleep well.  I and my others on this forum had lots and lots of nights with no perceived sleep.  It won't kill you as you already know, but it doesn't help with the anxiety.

 

Healing and recovery from Benzos almost always means things will be UP and DOWN for some time for most.  You could sleep well for days, weeks or months only to get hit by days, weeks or months of poor sleep.  I thought I was completely recovered after getting mostly good sleep for about 8 months only to get thrown back into a month long wave at 18 months off where I had 4 zero nights and a lot of 2-3 hour nights. 

 

It evens out over time for most.  The best advice I can give is to not worry if you sleep or not (easier said than done).  At first, I freaked out when I didn't sleep well or woke up at 1:00 or 2:00 am after a few hours of sleep. All I did was ensure that I wasn't going to get any more sleep.

 

In desperation for the sleep I thought I had to have to survive, I tried a plethora of different Rx and OTC remedies.  Nothing worked for me for more than a night or 2 so I was forced to deal with my insomnia without taking anything.  For me, it was only after I stopped trying to find something to knock me out like a benzo would, and stop worrying if I slept or not and stop freaking out if I didn't, when I did all these things, sleep slowly started to return.

 

My sleep would go from poor, to bad, to terrible, to fair to poor to fair to terrible to bad as it returned.  Try to avoid the temptation that even a few weeks of poor sleep means your primary insomnia has returned and you need to go back on Benzos or another Rx drug

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Theway2, thank you for taking the time to respond. I have read your story and seen some of your other replies and they have encouraged me during some of my darkest days (and nights.) I hope you realize that your journey is helping people you don’t even know about:) it reminds me of how God says we have to go from being a patient to a physician after He has healed us from our sickness.

 

That is correct on my ‘quitting’ in the past. I did all of my tapers, and CT, under the supervision of my Psychiatrist who assured me each time it was plenty of time based on the length of time I had been taking the Ativan/Mirtazapine/Klonopin. The most recent taper when I went to a compounding pharmacy and got my DR to prescribe liquid Klonopin and went very slowly was definitely the hardest at times but hopefully my final taper. I also worked with my sleep Psycologist (who was in contact with the psychiatrist) the whole time and she was the one who helped me to go as slow as needed and hold when I had a severe impact on my sleep after a cut. I’m still going to see her once a week. What I do realize now, that I didn’t then, is that you can’t easily go on (and off) Benzos. I blindly trusted my psychiatrist each time without realizing I was setting myself up for a long road when I wanted to get off. I know now that going back on benzos won’t solve anything but it doesn’t make the sleepless nights any easier.

 

My biggest struggle is being able to radically accept the sleepless nights as part of the healing process, especially when they hit you after a long stretch of ‘good’ nights like you described above. I talk a big game and put my faith in God’s plan for my life but when a bad night hits I’m right back to my weakest spot trying to do anything to make it go away and get some sleep. I need to have a back up plan for when that happens because staying in bed trying to sleep has never worked. The thought that something new is happening and causing my sleep issues sends me into panic mode and I just try to figure out how to fix it.

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Suzanne, You are not alone with this issue. The hard part about insomnia is that when it rears it's ugly head again after a period of reasonably good sleep, it brings back all of the bad memories of past episodes and we dread descending back into that pit again. It absolutely has happened to me multiple times both before, during, and after my benzo use.

 

What I try to do is flip the narrative. Yes, we dread going into that pit again. BUT, many of us, including you, have successfully climbed out of that pit. I know that if you go into that insomnia pit that you can get out of that pit. You know the techniques and you have the patience within you to do it! Just know that it will get better. You don't know when or how long it will take, but it will improve again. Because it has before.

 

I applaud you for seeing a sleep psychologist. I have used one myself and she has been extremely helpful. Have you tried any form of sleep restriction? The reason I ask is because sometimes when we get those zero sleep nights, it may actually be better to limit the amount of sleep we get the next night to some degree. So rather than getting a full 7 hours, which heaven knows must feel great, may be you limit yourself to 5 or 5.5 hours. That will help ensure that your sleep drive stays high for the following night as well. Then you can gradually add more time again. This may help you avoid the dramatic highs and lows and at least stabilize things.

 

Best of luck to you. I know you can do this without resorting to benzos again!

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Thank you Lilac:) I looked at your signature and it looks like we began taking benzos, and began to taper at almost the same time, I am assuming you started for insomnia also. I love my sleep dr, she has been the only dr that has really stuck with me through this, trying to help me get off the medication and heal. I have done sleep restriction with her before. It worked like a charm in 2017 when I first got off after using Ativan for about 1.5 months. Once my insomnia came back in January of 2018, I have been either on the medication or tapering so sleep restriction hasn't come up again. Now that you pointed it out, I wish I would have done that this time. I got zero sleep on Thursday the Friday crashed from 9:30-5:30 without waking up once, 8 hours is unheard of for me. When I tried to sleep last night my husband said I was asleep for about 20 minutes then woke up and got anxious and ended up taking the tylenol PM around 1130. I bet if I had only slept 5 or 6 hours on Friday then last night I would have done better. Thank you for the reminder, hopefully I won't have another zero sleep night but if I do, I will try sleep restriction again.
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Yes, I started on Benzos in response to an insomnia episode. I had never experienced insomnia before, so when it happened, it totally freaked me out, which of course only made things worse. The Ativan helped for a few days, but then honestly it didn't do much for me after that, but I stayed on it anyway as my plan at the time was to fix my insomnia and then taper off the Ativan. Well, my insomnia never really got much better, although I did stabilize it with the help of the Psych. What DID happen is that I began to fix my anxiety. And once I did that, the 4-5 hour nights of sleep didn't affect me as much.

 

One thing I learned through a mindful meditation class is that there is usually a "first arrow" - call it the real life physical ailment or life event that impacts you in some tangible way. But then behind that, our own minds shoot another three or four more arrows at ourselves that just makes the problem even worse! Call it catastrophicizing, anxiety, worrying, anger, frustration, beating ourselves up....all of these things are self-made arrows that just amplify the original problem. I still have that insomnia arrow being shot at me, but I am MUCH better about not piling on with a bunch more arrows.

 

Back to sleep restriction, that technique along with stimulus control are the two most clinically proven techniques in fighting primary insomnia. That doesn't mean they always work. But they stack the deck in your favor since they both promote sleep drive and limit the time you are in bed worrying about sleep.

 

Good luck!

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Thank you Lilac:) I looked at your signature and it looks like we began taking benzos, and began to taper at almost the same time, I am assuming you started for insomnia also. I love my sleep dr, she has been the only dr that has really stuck with me through this, trying to help me get off the medication and heal. I have done sleep restriction with her before. It worked like a charm in 2017 when I first got off after using Ativan for about 1.5 months. Once my insomnia came back in January of 2018, I have been either on the medication or tapering so sleep restriction hasn't come up again. Now that you pointed it out, I wish I would have done that this time. I got zero sleep on Thursday the Friday crashed from 9:30-5:30 without waking up once, 8 hours is unheard of for me. When I tried to sleep last night my husband said I was asleep for about 20 minutes then woke up and got anxious and ended up taking the tylenol PM around 1130. I bet if I had only slept 5 or 6 hours on Friday then last night I would have done better. Thank you for the reminder, hopefully I won't have another zero sleep night but if I do, I will try sleep restriction again.

 

Sometimes it helps to know you're doing better than you think.  I read your account from the first post, and you know, because of our experiences with insomnia and withdrawal we've built a huuuuuge story around sleep, it's a true story, and an emotional story, and lots of body reactions, triggers, and thoughts associated with missing sleep or getting inadequate sleep for too long.  But from what I've read here, your sleeping is actually creeping into the realm of normal people.  You should remind yourself of this often. 

 

I know at first that might be a sickening thought, "But I still need more! I want it to be OVER."  And I do pray it's over for you, and that you're 100% better, immediately. I actually do and will pray that as soon as I'm done typing. But I also want you to feel encouraged. And I think if you remind yourself frequently how well you're doing.  If you've never missed two nights in a row or something like that, any winning things like this, that you can remind yourself frequently, will start to unravel that sleep story and maybe kill a bit of your sleep anxiety.

 

You have a NEW story now, it's not the same story as when your sleep was at it's worst. If this has been going on, better sleep than before, for a while now, this is your NEW story. You can train yourself not to EXPECT anything worse.  Fear is expecting the worst, but if the worst has not happened for quite a while now.... guess what? Chances are SUPER high, it never will, and the more you remind yourself that the more you'll change your internal story and reactions.  I know it's very easy for me to SAY all this.  But little things like this might really start making a difference for you.

 

And let's pretend something bad really happens, like a life-event, and you lose sleep over it.  This is when you need a loved one to tell you, "Hey Suzanne (or Suzy?), everybody loses sleep when THIS stuff happens. You're still normal! You're okay. It's not coming back." 

 

Because the truth is, if your brain has healed, and you have some good evidence that it has, right? It really can't come back.  It REALLY can't.  Even if it wanted to.  Because it's physical. That's the great thing about physical laws. We may not be able to stop something bad happening sometimes, but equally.... we can't wish something terrible into existence. No matter what!

 

I had a fear of being poisoned that took over my life, for a really long time, (I suspect due to protracted withdrawal), and guess how many times I got poisoned?

 

Never.

 

Ever.

 

Why? Because it takes more than fear for something to happen!  Fear can affect your sleep, sure.  But if your body is healed as much as you are indicating, it simply CAN'T keep you awake like it did before without a good reason.

 

So remember that, reassure yourself, and have your loved ones reassure you.  Don't ever say reassuring things that aren't true, because then evidence will discourage you, but when you have a pattern like this... well... just keep an eye out to adjust your story to fit the reality. And by story I mean how you feel about what's happening. Your reactions. In other words, your scary thoughts. 

 

I know it's tough. And I pray the best for you and will.  Okay, pep-talk done, I hope it's been helpful, and if I'm wrong, forgive me! And do whatever you know is best, believe whatever you need to believe, etc. but I just thought I'd give this a try to see if it helped you in any way. 

 

It's what I have to do with my own physical injury.  You start getting scared the severe pain will come back etc. the second you stop taking your NSAIDS or something. Because I tried quitting my NSAIDS too early and DID get some pain back, some inflammation, but is it really realistic for me to think that will ALWAYS be the case? With no evidence except a one time deal earlier in my recovery? Should I worry about it? No. 

 

Worst come to worst I could always test it. Miss a single dose, see what, if anything happens.  Take a few days to catch them back up in my blood, and carry on.  Eventually though, if my body heals, then what? Then my story changes. :)

 

God Bless you, in Jesus' Name, Amen.       

 

 

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Tman, after another rocky night last night (took 4 hours to fall asleep but I did sleep for 3 hours) your post lifted my spit and encouraged me when I really needed it. Thank you ♥️. I’m going to try to turnaround my thinking today (3 hours is better than zero ) and have a good day. Thank you for your prayers, I believe God is healing me on His timeline. I just need to be better about trusting in Him during the good and not so good nights. Thanks again for your support. Suzanne
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Hey Suzanne, Since you are religious, I will share one of the visualization exercises I used when I was in my really deep insomnia pit and started losing hope.

 

I envisioned myself in the pit and reaching a my hand up for help, hoping someone would come to my aid in lifting me out of the pit. Then I would envision, one by one, people that support me in helping me out of the pit - my wife and my psychologist primarily, reaching down to help me out. And then I would imagine Jesus reaching down with a hand and me grabbing hold of it. And HIS was the strongest grip of them all!

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