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At least 5 years on Benzos followed by at least 1 year off Benzos Support Group


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This support group is to share the healing progress for people who:

 

(1) Were on Benzos for a long time (at least 5 years)

(2) Have stopped benzos for at least a year

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Background:

  -I took Klonopin for 14 years.

  -I spent about 10 months doing a slow taper.

  -I stopped all benzos a little over one year ago.

 

All the nasty symptoms are mostly gone (heart palpitations, insomnia, anxiety, short of breath, back pain, and chest pains).

 

I think my only remaining real issue is stamina.  Unless I get 10 hours in bed, I have terrible fatigue.  Even with 8 to 10 hours of rest, I get tired out after about 1/2 of a normal day of activity and sometimes get headaches.

 

I should add - to get the 10 hours in bed, I struggle.  I wake up every 2 hours, I take over the counter stuff to help (Advil, aspirin, magnesium glycinate, vitamin B complex, zinc, antihistamines, L'Theanine, Chamomile, etc) and I do meditations.  With all that effort, I can drift in and out of sleep for 10 hours and feel ok.  But anything less than 10 hours, and I am on the couch all day.

 

How about the rest of you?

 

Bob

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Hi Bob,

 

I was on clonazepam for 7 years (I cant remember the initial start date but I was on it for at least five years). My stop date is July 19, 2017.

I tapered off 4 mgs 1 mg per year. But I was so eager to be off the damn drug, I tapered the last 1 mg too hastily (3-4 months) but I refused to reinstate. I have been gritting my teeth ever since.

 

Almost all the physical symptoms have disappeared (except foot pain, muscle stiffness, insomnia, occasional heart palpitations, occasional inner trembling).

 

With the insomnia I think I am getting four hours of sleep now. Maybe 5 sometimes. I wake up all the time and it is hard to tell how much I am actually sleeping. I don't like looking at the clock to keep track because it makes me hyper-aware.

I have listened to meditations and soft music before and it helps to relax. Now though I keep it simple.

 

My worst symptoms/issues are related to cognitive impairment & intellectual disability. I did not have these issues prior.

I am really suffering on this front. All issues related to cognition are affected: poor concentration, poor word recall, poor language skills, damaged short term and long-term memory, can't form new memories, cant do basic math functions, headaches &head pressure, heavy fog, limited socialization because of lack of being able to verbally connect with others. I mean, I get through the day with limited small talk but can't get into much detail.

 

I can't work and haven't been employed for several years (even prior to benzo withdrawal, though).

It's a nightmare.

 

Anyway, just wanted to chime in and we'll see if anyone joins in.

 

 

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Hi TaterTot,

 

Thank you for sharing your experience.

 

I hope we can collect many experiences so we can compare "what is typical" in terms of healing.

 

Reading your message helps me be patience - not to expect too much too fast.  I just it is just a matter of time.

 

I know what you mean about cognitive reduction.  I think I have an answer to it.  Our brain can improve.  I started studying for a research project and the more I do it, the more my cognitive skills are returning.

 

I see from both our experiences, we are improving, which gives hope.

 

Bob

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  • 7 months later...

I am almost at three years off now, and I sense my cognitive skills are improving. I definitely agree that it takes time and I think it helps to put in some effort: I read, listen to audiobooks, podcasts, play computer brain-training games via "Lumosity", eat nutritiously and have started meditation. Though, I think our brains recover regardless if we do all that, I think it helps not to our brians totally atrophy!

 

I am able to follow more complex thoughts, but I get mentally fatigued quickly.

I was watching a Robert Whitaker lecture on YouTube where he discussed research that pegged recovery from psych patients off their medications to be at 2 to 4.5 years. With my history of extensive psych meds, I will probably be at 5 years, but here's hoping for less!

 

Heres his lecture in entirety:

 

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I'm wasn't strictly on benzo's but 12 years on zopiclone with similar problems. Stopped 17 months ago, did try SSRI for little whine made things lot worse. My problems all mental intrusive thoughts gradually got worse and worse. Since developed OCD from sertraline. Only briefly had few hours of window in the last week nothing before. Some days wonder if I'll ever improve. Have stopped the SSRI so hoping will eventually improve. Never seem many postings on zopiclone so hope I can join yours.
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I am almost at three years off now, and I sense my cognitive skills are improving. I definitely agree that it takes time and I think it helps to put in some effort: I read, listen to audiobooks, podcasts, play computer brain-training games via "Lumosity", eat nutritiously and have started meditation. Though, I think our brains recover regardless if we do all that, I think it helps not to our brians totally atrophy!

 

I am able to follow more complex thoughts, but I get mentally fatigued quickly.

I was watching a Robert Whitaker lecture on YouTube where he discussed research that pegged recovery from psych patients off their medications to be at 2 to 4.5 years. With my history of extensive psych meds, I will probably be at 5 years, but here's hoping for less!

 

Heres his lecture in entirety:

 

I just watched the lecture and the last few minutes of it they talked about how I can take 2 to 4 years for true healing to occur and WOW did I ever need to hear that thank you so much.  This is giving me more hope.

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I'm suffering from headaches and head pressure, too, much of the time. It is exhausting. Somedays when I think I get improved sleep, I feel like my cog-fog is worse which seems counter-intuitive!

 

How are other peoples cognitive issues? Mostly resolved or still an issue? How long did you suffer from cog-fog or more distressing cognitive symptoms? Just curious. I do know it takes some us a lot longer, for sure.

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Hey Tatertot!  I feel like my awareness of my cogfog has changed.  I think I have been forgetting things for a long time, but only more recently am I this aware of it, which I guess is a good sign.  I frequently get short term memory loss.  The other day I made two pitchers of ice tea, swearing I don't remember making the first one, but obviously, I had done it.  This sort of mistake happens frequently to me, especially for things in the last 48 hours.  I have been meaning to do more writing of things to keep track, such as schedules or lists of things to do, even if only to keep track of what I did, and remember it. 

 

My anxiety is definitely way less.  I still have periods of anxiety, but I am way better at managing it, and frequently, I see it is just my body being anxious, and has no ground in actual things that are happening to me.  Breathing exercises and mindfulness has helped me a lot with this.  I've read a few different takes on it and found them very helpful. 

 

I know that I have improved with my brain function, though it is so hard to say how, exactly.  I am enjoying things more, and able to take in new information.  Recently, I found joy in learning new things again, and even found new interests!  That was so exciting, as I hadn't experienced it in so long, I wasn't expecting it to happen at all. 

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Hi Greencup! Thanks for sharing! Did I read correctly that you finished your last dose in October 2019?

And I relate to the short term memory loss. I am huge issues with memory. My mind is often just a big blank. Like its hard to think of things to say and its hard to concentrate. If someone is talking and I start thinking of something, I can no longer hear them. Its like I can only do one thing at a time. If the TV is on and someone is talking, its only one thing or the other, not both. I used to be able to multi-task cognitively, but no longer. Keeping a log of activity is a great idea! I got a  scheduling calendar and I try to keep track of what I do and make plans, because otherwise I would never remember.

 

I have a difficult time with language in general and I think sometimes I talk at the level of an elementary student!

 

Mindfulness practices (breathing and meditation), nutrition, therapy and reducing exposure to stress are really the only things we can do (imo) that will help us with the anxiety that led us to taking benzos.

 

So glad that you are able to find new hobbies and are able to take in new information. That is a really good sign for healing. I'm so glad that you are finding joy in your life again, that is the ultimate reward for getting off benzos!

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Is this thread still going? I was on Ativan beginning in 2001 for anxiety. I did a valium crossover, but experienced psychotic like symptoms at 5mg which put me in the hospital. I jumped at that level, and have been benzo free dor 23 months. I have seen some progress, but still have tinnitus and general benzo flu. I am trying to stay positive, looking for the next milestone which will be 36 months. Many people feel better at that point. Hopefully, I will feel better, and the world will be free of COVID. PM me if you want to talk, I would like to be part of a support group if possible.
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Is this thread still going? I was on Ativan beginning in 2001 for anxiety. I did a valium crossover, but experienced psychotic like symptoms at 5mg which put me in the hospital. I jumped at that level, and have been benzo free dor 23 months. I have seen some progress, but still have tinnitus and general benzo flu. I am trying to stay positive, looking for the next milestone which will be 36 months. Many people feel better at that point. Hopefully, I will feel better, and the world will be free of COVID. PM me if you want to talk, I would like to be part of a support group if possible.

Yes, I still am on this thread.

Like you, I am about 22 months benzo free but still have some problems like anxiety induced insomnia.  Sometimes, it can be very bad.  Sometimes, I nearly feel healed.  Here is a link to a video.  The last few minutes of it talk about needing 2 to 4 years for full recovery. 

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I will be 36 months off on July 19 this year and while I have healed a lot, I have a lot more healing to do, especially in the cognitive impairment area. It is really unbelievable how many of us are suffering this far out, but to know that people recover after three years is very inspiring and keeps me going!

 

Data shows people recovering within 2-4.5 years, but I also heard from someone that her friend reported a complete clearing of her cognitive symptoms, back to "normal", at the 5 year mark. She had been on multiple anti-depressants and a benzo, like me, so needless to say, I keep that in mind every day. Where else am I going?

 

I will have my ups and downs with a pity-party and with symptoms but I will always come back around to HOPE.

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Since we are all in the same boat (long term users of benzos and at least 1 year off), let me ask a question to the group.

 

I still struggle with anxiety induced insomnia.  I can have nice sleep on nights when I have no responsibilities coming up.  But if there is a big event the next day (e.g. start a vacation, meeting at work, visits from people, whatever),  I get uncontrollable anxiety and do not sleep. 

 

How common is that for the rest of you?

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I deal with the same problem. At almost 3 years off, I am able to get many hours of sleep in a row now. However, I still feel tremendous anxiety at night. I sometimes wake up with it in the wee hours. And I do not handle stress well anymore. I easily lose sleep if there is an event that I have to plan for the next day. If there is something on my mind then sleep is elusive.
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I deal with the same problem. At almost 3 years off, I am able to get many hours of sleep in a row now. However, I still feel tremendous anxiety at night. I sometimes wake up with it in the wee hours. And I do not handle stress well anymore. I easily lose sleep if there is an event that I have to plan for the next day. If there is something on my mind then sleep is elusive.

Thank you for that awesome input.

 

Since you are about a year ahead of me I would like to ask a question to help me learn about my future.

 

When you said " If there is something on my mind then sleep is elusive"

 

Has that been constant for all 3 years since you stopped benzos or has it slowly been improving year by year?

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Yes, I get tons of anxiety when something I feel is slightly stressful. Sometimes I am able to do things without stressing, especially if they become routine.  For example, I was very nervous taking my mother to the doctor's and the long drive when I did it rarely, but the more I did it, the more I became used to it, and knew what to expect, and then it was no big deal.  I struggle with things that I don't do often, like your examples Bob.  However, I will say, it has gotten better, and I still can usually sleep, even though I will sometimes get anxious, many times for me, it comes out as irritability, and an inability to really be present, the day/night before.
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My sleep "profile" has been a pretty severe. I didn't sleep naturally for over two years. The first few months after I discontinued the benzo I didn't sleep a wink. Couldn't move, stuck to the mattress, staring up a the ceiling. Total insomnia coupled with the debilitating symptoms of stopping a benzo. I started to take Benadryl and melatonin and it would allow me to sleep anywhere from 10 minutes to a half-hour at a time. I then switched Benadryl for medical marijuana edibles (indica-strain) which I heard could relax me enough to help me sleep. It really helped, actually, and I would sleep in 3-4 hour block. My cognitive impairment was so severe that I didn't notice if it was making my cognition worse, though I suspect it was. Eventually, I stopped taking the edibles and went back to melatonin and about nine months ago I was able to get sleep without any "substances" whatsoever. I can now sleep 4-5 hours without waking up, and on occasion, even longer.

 

One thing I notice is that despite getting more sleep now I never feel "rested' or "refreshed" in the way that I used to before benzos. I could be due to the sleep deficit or still-damaged neurotransmitters. Wondering if anyone else feels that way, too?

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Yes, I very much feel that way (i.e. that sleep is not refreshing).

I think it is the damage from the benzos.  Every month I heal my sleep is improving.

 

If I spend 10 hours in bed using a bunch of "helps" as described in my signature, I can get enough sleep that I feel rather good for at least half the day.

The MTHFR is an interesting thing I am learning about.  It requires special forms of two of the B vitamins (not the normal type).  Here is my bedtime cocktail with the special notes about the two B vitamins for MTHFR.

 

(1) Two hours before bed, I take Pyridoxal 5’-Phosphate (do not take regular B6, it doesn't work with MTHFR).  Take very little, like 1/4 of the tablet, just let melt in your mouth.

[nobbc]https://smile.amazon.com/gp/product/B0006O2IZU/ref=ppx_yo_dt_b_asin_title_o07_s00?ie=UTF8&psc=1[/nobbc]

Note, if you take too much, you might get muscle spasms.

 

(2) Two hours before bed, I take some zinc to help convert glutamate to gaba.  I take perhaps 1/2 of the tablet of:

[nobbc]https://smile.amazon.com/gp/product/B00020ICLC/ref=ppx_yo_dt_b_asin_title_o06_s00?ie=UTF8&psc=1[/nobbc]

 

(3) Two hours before bed, I take Niacin, about ¼ of a tablet of [nobbc]https://smile.amazon.com/gp/product/B00INBIPZU/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1[/nobbc]

 

(4) A variety of other things may be of some help:  Magnesium glycinate and maybe ¼ of an advil or aspirin and some L’theanine and chamomile tea.  For emergencies only, Benadry or ½ Unisom really works as long as I only use it for a few days.

 

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I forgot to mention, that like Tatertot, I also started using marijuana to help sleep, and I still do, and it does help.  I originally started using it for benzo rage, but I find it helps with all kinds of benzo symptoms.  I do wonder if it also is causing me some cogfog though.  I can never tell which is from what.  I remember being younger and still sharp while smoking pot, so I do think it is still from the benzos, but who knows at this point. 
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Well, that is quite a regimen that you have developed Bob, and I am glad that it has provided some relief. I need to learn more about the MTHFR gene. I will look more at your regimen and see if maybe some of it may be helpful for me.

 

Well, sure enough, after our discussion about how having an event the next day can interfere with our sleep, it happened again to me. I had to fast for a big blood draw for today and I guess I was subconsciously nervous about the blog draw, and I barely slept a wink last night and was extremely agitated and exhausted today. I have to be honest, the last few weeks I feel that I have been going backwards a bit with symptoms. Too much time indoors and bad sleep, I guess.

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  • 3 weeks later...

Well I am in a wave again. I had a lot of pretty good days where my only pain was my shoulder.  Now my shoulder pain had magnified and I feel like my shoulders are made of mush and might just fall off as it seems like there's no muscle in them anymore. 

 

Bob- I read your progess log, and I see you are drinking gin to fall asleep.  I just want to say that I don't think drinking alcohol is a good idea for many reasons.  In benzo withdrawal, it could turn against you, and using it to fall asleep regularly could breed dependence.  Please be careful. 

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