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2400+ Days Off - My Insomnia/Benzo Advice


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I wish I had insomnia lol I have non 24 instead and haven't met a single person that's healed from it

 

About HETLIOZ® (tasimelteon)

 

HETLIOZ® is a melatonin receptor agonist that is FDA approved for both Non-24-Hour Sleep-Wake Disorder (a serious, chronic circadian rhythm disorder) and nighttime sleep disturbances in Smith-Magenis Syndrome (SMS) in patients 16 years of age and older. In addition, HETLIOZ LQ™ oral suspension is approved for treatment of nighttime sleep disturbances in SMS in pediatric patients 3 years to 15 years of age.

 

There’s an FDA-approved therapy to help you improve nighttime sleep and decrease daytime sleepiness. Ask your doctor about the first and only treatment for people with Non-24 and nighttime sleep disturbances in SMS, called HETLIOZ® (tasimelteon).

HETLIOZ® is the first prescription medication approved to treat Non-24 and nighttime sleep disturbances in SMS.

 

In clinical studies, HETLIOZ® helped many people living with Non-24 and nighttime sleep disturbances in SMS sleep at night and stay awake during the day. Taken as directed by your doctor, HETLIOZ® may help you break the cycle of disrupted nighttime and unwanted daytime sleep that you've been struggling with.

 

The most common side effects associated with HETLIOZ® include headache, elevated liver enzymes (ALT), nightmares or abnormal dreams, and upper respiratory or urinary tract infection. These side effects may occur more frequently in patients 65 years of age or older.

 

HETLIOZSolutions™ was created to support people who have been diagnosed with Non-24 or nighttime sleep disturbances in SMS. The program can assist with coordinating care to help answer insurance questions, as well as provide financial support and educational resources. And most importantly, by letting you know that you are not alone on this journey.

 

If you have questions, help is available by calling HETLIOZSolutions™ at 1-844-HETLIOZ—that's 1-844-438-5469—from 9:00AM to 8:00PM, Monday through Friday, Eastern Standard Time.

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I wish I had insomnia lol I have non 24 instead and haven't met a single person that's healed from it

 

About HETLIOZ® (tasimelteon)

 

HETLIOZ® is a melatonin receptor agonist that is FDA approved for both Non-24-Hour Sleep-Wake Disorder (a serious, chronic circadian rhythm disorder) and nighttime sleep disturbances in Smith-Magenis Syndrome (SMS) in patients 16 years of age and older. In addition, HETLIOZ LQ™ oral suspension is approved for treatment of nighttime sleep disturbances in SMS in pediatric patients 3 years to 15 years of age.

 

There’s an FDA-approved therapy to help you improve nighttime sleep and decrease daytime sleepiness. Ask your doctor about the first and only treatment for people with Non-24 and nighttime sleep disturbances in SMS, called HETLIOZ® (tasimelteon).

HETLIOZ® is the first prescription medication approved to treat Non-24 and nighttime sleep disturbances in SMS.

 

In clinical studies, HETLIOZ® helped many people living with Non-24 and nighttime sleep disturbances in SMS sleep at night and stay awake during the day. Taken as directed by your doctor, HETLIOZ® may help you break the cycle of disrupted nighttime and unwanted daytime sleep that you've been struggling with.

 

The most common side effects associated with HETLIOZ® include headache, elevated liver enzymes (ALT), nightmares or abnormal dreams, and upper respiratory or urinary tract infection. These side effects may occur more frequently in patients 65 years of age or older.

 

HETLIOZSolutions™ was created to support people who have been diagnosed with Non-24 or nighttime sleep disturbances in SMS. The program can assist with coordinating care to help answer insurance questions, as well as provide financial support and educational resources. And most importantly, by letting you know that you are not alone on this journey.

 

If you have questions, help is available by calling HETLIOZSolutions™ at 1-844-HETLIOZ—that's 1-844-438-5469—from 9:00AM to 8:00PM, Monday through Friday, Eastern Standard Time.

 

This isn't available in Canada and I might try melatonin first. Also hoping it heals on its own with time since benzo wd is what caused it in the first place.

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If it was Benzo induced, it should fade and end....melatonin can be used to reset your circadian rhythm. 

 

Good luck!

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If it was Benzo induced, it should fade and end....melatonin can be used to reset your circadian rhythm. 

 

Good luck!

 

It was definitely benzo withdrawal induced. Started having sleep issues literally right when I tried tapering but ended up in severe withdrawal. I never dealt with any sleep issues in my life, not even insomnia. To have something as severe as I do now is so strange.

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Benzos are known to cause severe insomnia.  I've been on this forum long enough to have come across some buddies that had "ultra extreme" insomnia (my term).

One survivor only had 2 perceived sleep events in an entire month and that poor of sleep literally lasted an entire year.  Not that she only had two sleep events per month for the year, but her sleep wasn't much for an entire year, which seems impossible, until you experience something similar yourself!

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Update:

 

I am closing in on 6 years off of my CT and my sleep is still slowly improving....how you might ask?

 

I sleep longer between waking up.  For about the first 4 years off, I'd wake up a lot most nights...sometimes 10 times per night but could almost always fall back to sleep, but some nights it could take an hour or longer.

 

I didn't get much more than 2 or 3 consecutive hours of sleep during that time

 

Today I sometimes get 4 and 5 hours of consecutive sleep before waking up and that's usually to pee....LOL  :thumbsup:

 

I'm writing this to give you hope, not to scare anyone.  My life returned to "normal" or pre-benzo several years ago.  Today, I average 7-8 hours of sleep each night.  My Fitbit shows about 1 hour and 15 minutes of deep and REM sleep each night with about 5.5 hours of light sleep on average. Sometimes my deep sleep is as high as 1 hour 45 minutes and my REM was as high as 1 hour 50 minutes.  Both Deep and REM sleep are physiologically and psychologically restorative!

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Benzos are known to cause severe insomnia.  I've been on this forum long enough to have come across some buddies that had "ultra extreme" insomnia (my term).

One survivor only had 2 perceived sleep events in an entire month and that poor of sleep literally lasted an entire year.  Not that she only had two sleep events per month for the year, but her sleep wasn't much for an entire year, which seems impossible, until you experience something similar yourself!

 

I definitely experienced zero-sleep nights for about 2 years after my rapid-taper from clonazepam. I was adamant about not getting on another prescription so I tried melatonin, Benadryl, medical marijuana edibles. That stuff left me groggy and toxic feeling, but at least it would give me 10-minute to hour intervals of sleep. Otherwise, I was utterly sleepless.

I don't know how I survived. It was and has been a total nightmare. I wasn't on the insomnia boards, though I should have been- my cognitive impairment kept me from knowing how to navigate this website adeptly.

Now, at almost 5 years off clonazepam (though I was on a bunch of other drugs that I rapid-tapered before clonazepam), I sleep about 4 hours per night, sometimes more and on a rare occasions, less.

Completely natural for about 3 years. I am praying that my sleep keeps getting better, overall. We need it for recovery, resilience, and overall wellness.

 

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TaterTot,

 

Sorry that you are still suffering from poor sleep.  Maybe some of the "newbies" could learn from your experience and resilience of living on 4 hours per night average.  I did that for awhile but not even 1 year...Kudos to you and here's hoping that your sleep continues to improve!  :thumbsup:

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  • 4 weeks later...
Thanks so much for sharing this really helpful post ❤️❤️ Also.. for addressing the Fatal Insomnia!! Wow.. it’s a relief to hear that I am not the only one who has self diagnosed myself with that horror 😳😬😩!!  This whole thing is new.. I have a long way to go.  But with prayer, determination and a family I love I will see it through
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Thanks so much for sharing this really helpful post ❤️❤️ Also.. for addressing the Fatal Insomnia!! Wow.. it’s a relief to hear that I am not the only one who has self diagnosed myself with that horror 😳😬😩!!  This whole thing is new.. I have a long way to go.  But with prayer, determination and a family I love I will see it through

 

I'm glad you're here, I just left you a link on your post but I see you found this thread.  :thumbsup:

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  • 2 months later...

I have not had the worst insomnia of all the buddies here, but I had it pretty severe for about 10 months, so I feel like I am at least qualified to point out a few things as I had about 70 zero nights (or nights of no perceived sleep) during that time and many times for 3-4 nights in a row.  Besides having a litany of symptoms, sleep was my worst symptom followed by severe claustrophobia. I still went to work most days and drove a car.  I was never tired so there was no risk of falling asleep at the wheel.  After you taper or jump cold turkey (what I did, and not recommended), below is what you may or may not experience.  Some of this is difficult to do, especially when you are sleep deprived and your brain acts completely crazy and tells you many lies that you start to believe over time.  These lies include: 1) You'll never sleep again on your own....NOT True, 2) You'll never heal, NOT True, 3) Your WD is permanent, NOT True, 4) You have some sort of unique WD that no one else has, NOT True, while all WDs are different in terms of symptoms, symptom intensity and how long they last, all WDs play out pretty much the same way, and 5) There's something else wrong with me medically, NOT True...it's always been Benzo WD!

 

Here is what I have learned at just over 2,000 days out from a CT of 4 different Benzos:

 

1)  ACCEPTANCE is the key to getting past WD or any other type of insomnia.  Acceptance doesn't imply or suggest "APPROVAL."  It means you do your best to recognize what is happening and try not to overreact to it.  Once I was able to accept and understand that lack of sleep could not kill me (my body would get all the sleep it needed prior to that happening) I handled the little or no sleep way better. 

2)  DISTRACTION is right up there with acceptance when dealing with little or no sleep.  Find something to do to distract yourself from always thinking about and worrying if you'll sleep or not!

3)  Freaking out when you find it hard to fall asleep (punching the pillow, tossing and turning, etc.) will only ensure you won’t get much if any sleep!  I know this from personal experience.

4)  Not complaining or talking about your lack of sleep with others will go a long way toward getting your own sleep back.  Being grateful for any sleep you do get will go a long way toward getting your sleep back.  It's more about GRATITUDE than having an ATTITUDE! The day is going to pass whether you are grateful/thankful or being down and feeling sorry for yourself for the shitty hand you were dealt by Benzos.  Along with this, don't keep a record of how long you slept.  It won't help.  Most of the time we get more sleep than we think anyone and after your opportunity to sleep has passed why look back at how good or bad it was?  Don't talk about sleep with friends, family, coworkers, etc.  If they bring it up, politely change the subject.  It won't fix your insomnia but will make it easier to deal with.

5)  Not looking for another Rx drug to help you sleep will go a long way towards getting your sleep back. Sure, some folks do fine with another Rx drug for sleep…you do what is best for you, but I know with 100% certainty that all Rx and OTC sleep aids stop working and can lead to psychological or physical dependence and have their own withdrawal?  You decide though!

6)  Not caring if you sleep or not will go a long way toward getting your sleep back.  It took some time, but eventually I just started giving insomnia the “middle finger.”  It didn’t make my insomnia go away or make it better, but it gave me a “sense of power” over it.  I was in charge, not the insomnia.

7)  Insomnia’s days are numbered.  It only has so many days it can affect your sleep and your life.

8  This is temporary, it won’t last forever, although it sure feels like it will sometimes.

9)  Everyone heals.  It just takes time.  Unfortunately, Benzo withdrawal is unique to each person.  Just as no two snowflakes are alike, no two withdrawal experiences are alike. However, keep in mind that healing from Benzos will NOT heal preexisting conditions.  If you struggled with insomnia prior to Benzos, you will still likely have some form of it after you are healed.  However, you'll be in a much better position to deal with it as you should have developed a lot of coping skills during your WD and healing/recovery?

10)  No one knows how long withdrawal or your sleep issues will last.  It is what it is and ends when it ends.  It has no Rhyme or Reason and makes no sense at all. 

11)  Eating healthy (clean) exercising (but not too strenuous) and drinking lots of pure water may help reduce the severity of symptoms?  There are many different definitions for "healthy" eating.  After a lot of research and personal trial and error, I found that a Vegan diet (no meat, fish, poultry, dairy, cheese, eggs, butter, milk, etc.) is a great way to improve your overall health and vastly improve all blood markers.

12)  There is no “magic bullet” in the form of an Rx drug, OTC drug or natural substance that can reduce how long withdrawal lasts.  That is the million-dollar question?  When will it end? And that is the hardest part about going through withdrawal…not knowing when it will end; but it eventually ends one fine day!

13)  There is no such thing as a “small dose” or a “weak” Benzo.  They all down regulate GABA and replace the body’s normal calming effect by destroying your sleep drive.  They have a different effect on everyone that takes them.  That is why some can take them for years, quit and have no symptoms.  Others (like me) took them short-term and ended up with Protracted Acute Withdrawal Syndrome or PAWS.  Think of GABA as your body’s brake pedal.  Benzos temporarily stop your brake pedal from doing its job of keeping you calm and relaxed.  Glutamate is your body’s gas pedal.  Benzo damage temporarily causes your body’s gas pedal to get stuck to the floor.  Hence the insomnia and feeling wired even when you are tired.  Your body knows how to get GABA and Glutamate back in balance, but this takes time and more time.

14)  Quitting “cold turkey” is not recommended and typically leads to more intense symptoms and a longer withdrawal period.

15)  A slow taper is best, but sometimes a slow taper does not lead to reduced symptoms or an increase in healing/recovery time.

16)  Not “Googling” sleep or insomnia sites went a long way towards me “psychologically” healing.  You can “verify” anything “Dr. Google” has to offer so it’s best to avoid Google!

17)  We need to heal the entire person (body, mind and spirit) in order to be “truly and completely” healed.

18)  Expecting to be healing or have an improvement in symptoms by a certain date is futile.  I did that.  I thought after 4, 6, or 8 months off I should see some relief.  However, recovery/healing plays by its own timeline, not ours.

19)  Healing is NON-LINEAR (UP and DOWN) for a long time for some.  New symptoms can appear out of the blue and symptoms that faded can reappear.  They WAX and WANE.  Unfortunately, It is a real “roller coaster” ride for most, but it does end one glorious day.

20)  Windows and Waves are very common for most.  Windows are periods where symptoms are minimal and sleep is generally good.  Waves are where symptoms are at their worst and sleep generally sucks.  People usually transition between Windows and Waves with the Windows eventually becoming more frequent and lasting longer than the Waves until finally the Waves end.

21)  Late Waves or a return of symptoms and lack of sleep are more common than you might think.  I had a late wave at 18 months off that lasted almost one month (29 days).  I had another “mini” wave at 30 months off and still another longer wave of sleep issues at 53 months off that lasted 6 weeks!  You are NOT broken.  It is just part of the non-linear healing process.

22)  Almost all of your symptoms are most likely Benzo related?  I went to the ER 4 times over a 45-day period and all they wanted to do was put me on more Rx drugs for sleep, anxiety, depression, etc.  In addition, I had another 12 doctor visits and had almost every conceivable medical test performed and all results came back normal.  It is really easy to think you have a plethora of other diseases.  In fact, hypochondria is a pretty common WD symptom along with your mind and thought process always going to the negative.  You think the worst and expect the worst, but really have little control over those thoughts and feelings.  They are WD related.

23)  Almost all western medicine doctors do NOT understand Benzo withdrawal or even acknowledge it exists.  It is best to stay away from non-Benzo wise doctors during your withdrawal, especially psychiatrists that will want to write prescriptions for lots of Rx drugs.

24)  Sleep Hygiene did not work for me during the thick of my withdrawal.  Especially the part about getting out of bed and doing something until you are tired and then going back to bed.  If I would have followed that advice, I would have gotten zero sleep most nights.  That doesn’t mean that you shouldn’t get out of bed and use the bathroom or get something to eat though. Sleep restriction, CBT, acupuncture, CBD oil, etc., did nothing for me early on.  They might work for you after sleep starts to return?

25)  Meditation and listening to relaxing music helped some later on, but did nothing for me the first 6-8 months.  You might want to consider hypnosis DVDs too Paul McKenna has a free Sleep Hypnosis MP3 you can listen to that helps "train" your mind AFTER your sleep starts to return.  Video link is here:

26)  I found out that staying in bed is very important even if you can’t sleep.  Your body needs rest.  Getting out of bed (except to go the bathroom or get something to eat, etc.) will not rest your body.  I found that I nodded off here and there if I stayed in bed when I couldn’t sleep.  In addition, people get “micro sleeps” they are unaware of and these will sustain you until your body is ready for some longer periods of sleep.

27)  Counseling can help deal with the psychological aspect of recovery.  It helped me and I appreciated the reassurance from the counselor that lack of sleep cannot kill you.  Your body will get all of the sleep it needs before that can happen.  For others that insist they cannot function, then you may want to consider something else for sleep.  Always do what is best for you.

28)  Sleep studies are usually a waste of time and money?  I had two done and found out exactly what I knew before I went in.  I don’t have apnea (which is what they are most likely looking for) and I wasn’t sleeping much.  I did learn I was still getting some deep sleep (23 minutes and 45 minutes…first and second sleep study). 

29)  I went to the Coleman Institute in Virginia for Dr. Coleman’s touted Flumazenil treatment that did not work immediately (or maybe not at all?) and cost me a lot of money.  In desperation to get some sleep relief I was willing to try almost anything.

30)  I pretty much tried every single non-benzo Rx drug and OTC remedy for sleep.  None of them worked for more than a day or two.  I found the best way for me to recover was to not take anything.  This advice is only for those that can accept it, if you need to take something non-Benzo for sleep, then do what is best for you.  I did not want to introduce something else into the mix that could have created a “psychological” or physical dependence for sleep.

31)  Natural Remedies work for some, but also a lot of “natural” remedies for sleep can trigger or exacerbate existing symptoms?  I found a “functional” doctor that was able to provide guidance and advice on trying some of these.  Again, I ditched the natural path too as I just wanted to be able to sleep on my own without taking anything.  I tried almost every “natural” sleep aid too, including CBD oil, teas, melatonin, etc.

32)  My sleep returned in typical patterns.  I went through the phase of getting sleep one night followed by little or no sleep the next night for months.  I had almost 70 zero nights (or nights of no perceived sleep) and countless nights of 30 minutes to 2 hours.  Slowly I started getting 2 or 3 or 4 hours and for one or two or three days in a row.  Eventually it progressed to weeks and now months in a row.  I still had set backs along the way where I would get zero nights or 1 or 2 hour nights.  Eventually those faded too.  At just over 1800 days off I usually get 6-7 almost every single night and lately I have been able to get a bunch of 9 or even 10 hour nights.  I still wake up 2+ times per night but can usually fall back to sleep fairly quickly.

33)  My Sleep is still improving.  3 years ago I used to get at least 1 night per week of 2 – 4 hours of sleep.  That is now down to 1 time every few months.  I fall asleep fairly fast now (sometimes in less than 10 minutes) and stay asleep for several hours straight.  I can nap now with no worries about ruining my nightly sleep.  Over the past year I have been able to nap on the weekends.  I generally take a 1-2 hour nap without any effect on my nighttime sleep. In the past, I never thought I would nap for the rest of my life.  In fact, I went through a period where I believed I had “fatal insomnia” and was doomed to a life of very little or no sleep. 

34)  The average body has 45,000,000 Gaba receptors that may need to heal and some regrow. Be patient with yourself.  Be kind to yourself.  Cut yourself some slack.  You WILL be you again even though that might not seem possible right now.  Benzos lie to us and make us believe we will never heal or get “natural” sleep back.  All Benzo lies.  Again, be grateful for any sleep you do get.  Focus on the positive things during your recovery.  Hang around positive people.  Laugh, smile, and be the best version of you given the crummy circumstances.

35)  If you had issues with sleep prior to going on Benzos, you might still have them after you are off and healed.  You might want to look for underlying causes for your lack of sleep.  Again, a functional doctor is a good route to take as they won’t put you on Rx drugs.  Either way Benzo induced insomnia gives you the coping skills and tools to deal with some off nights of sleep after you are healed. If you reach for another Rx drug to help you sleep during WD, it is harder to develop those coping skills, but again, do what you think is best for you.

36)  A weighted blanket has helped me.  I bought a 25lb weighted blanket off of Amazon and it has helped me to stay asleep longer and fall asleep faster.  It works on the principle of DTP (Deep Touch Pressure) that is supposed to release serotonin?  You might want to give it a try?

37)  I would have stood on one leg on the edge of a 100 story building and spit into the wind wearing a tutu if I thought it would have helped my sleep.  I say that to remind everyone that Time is the healer and being as healthy as possible may reduce symptom severity and improve your sleep?  There are no shortcuts or ways to “speed up healing” it plays out on its own timeline.  Unfortunately, the only way out is through the process.  But hang onto this FACT...it ends, it doesn't last forever.  Like a long, boring, pointless movie, it comes to an end one day.

38)  I chased every known thing that could help my sleep that was within my budget.  I learned that all I really needed to do was be patient, be healthy and let father time (tick tock, tick tock) do its thing.  Of course, how you respond to your dilemma can help too.  The root word of responsibility is response.  How you respond will make some difference and help you cope better.  I was very weak mentally during the first 6 months of my WD.  Now I believe I am a lot stronger mentally.

39)  Sleep does return.  I promise.  It just might not be when we would like or how much we would like.  Most experience REM rebound or lots of dreams and many don't feel "refreshed" when sleep starts to return.  It will be UP and DOWN for some time so don't panic if you go back to some crappy nights or even weeks of sleep.  It will even out in the end.  Just do your best to get through those days after a night of little or no sleep.

40) CBD products have vastly improved in terms of potency and price.  They didn’t work for me, but are affordable and worth a try.  I know they work for some, but still won’t knock most out like an Rx drug would?

41) Try to stay away from negative people or those that claim you won’t heal.  Many of those in that camp have a host of other underlying medical or psychological conditions or illnesses that contribute to their “perceived” lack of healing. 

42) This was by far the worst experience of my life, but it helped me to grow as a person and develop coping skills and it made me appreciate so many things I took for granted in the past.  "Ordinary" days are awesome now and I enjoy and appreciate the "simple" things in life much much more now!

43) We all know we feel a lot better when we get a decent amount of sleep and medical science is slowly making progress as to why we even sleep.  But for now, why we sleep is still pretty much a mystery. But short-term (a few years or so) of sleep deprivation will not kill you or cause permanent damage.  There is a small group of people on this forum that believe otherwise.  However, there is no concrete medical evidence to suggest that.  And, even if you find another Rx drug (non-Benzo) that can help with sleep, 8 hours is extremely difficult to come by during Benzo WD induced insomnia.

44) The 2019 Lisa Ling special “The Benzo Crisis” brought new awareness to how devastating Benzo WD can be.  Hopefully more shows like this and more education and public awareness will continue regarding Benzo WD?  Hopefully more and more doctors will become aware of the damage Benzos can do and thus change their prescribing practice…especially when it comes to how long people stay on Benzos.

45) Micro sleep (sometimes called local sleep) is where the brain attempts to conserve energy by entering a state where the body temporarily shuts down neurons in some regions of the brain but not others.  People who have entered local sleep may appear fully awake even though parts of their brain are technically "sleeping."  These local or micro sleep periods can sustain you until sleep begins to return on its own.

46) Meditation has been a big help to me.  I learned how to meditate on my "CALM" app on my phone.  I bought a one-year subscription.  The sleep stories alone are worth the $42 I paid.  Meditation is easy to learn and practice.  It's not some mystical far East thing that takes years to master.

47) Don’t expect to see results in your sleep by a certain time.  It will only make healing harder.  Accept, distract, and be grateful for any and ALL sleep. Try not to care if you sleep and the Sandman will make a glorious and welcome return into your sleep deprived life.  Hang in there, you’ve got this. It is temporary and it ends.

 

I ran into some sleep issues at 18 months off, 32 months off and again at 53 months off.  The good thing is I used my own advice listed above to get past the temporary insomnia.  BTW, it was much, much, much easier to deal with these bouts of insomnia than Benzo induced insomnia.  Even though I had nights of no perceived sleep, I always slept well the next night.  That NEVER happened during Benzo WD insomnia.

 

This might help too?

 

Please be positive and try to stop thinking or saying "I can't believe that I will sleep again."

Cynicism and skepticism have filled our lives.  We need to get out of the habit of questioning and doubting the possibility of things...

It's not whether Time will help, but whether we believe it will happen!

Focus on those that recovered and got their sleep back!

 

Ask yourself (and be honest) what you are doing to improve your personal health and lifestyle?

Are there things you can do that would help your overall health and promote sleep?

 

No one can keep you in your current situation, except you!

Understand the root word of responsibility is response.  You may not be able to control anything happening to you from withdrawal, but you can control your RESPONSE to it.

You have the power and the ability to respond to your current situation in any way you choose to.  You can be negative and play the "I feel sorry for myself card," or you can look WD or insomnia or whatever you are trying to overcome in the "eye" and choose to improvise and adapt and live the best possible life you can given the crummy circumstances.

In your response, lies true healing and recovery!

 

No one can keep you down, but you!

You are not a victim, you CAN get past this by dealing with your thoughts, actions and reactions.

I look at veterans and others that lost limbs or are wheelchair bound and they rise up and meet their disability head on and live life to the fullest.  They are an inspiration to me and so are many on this forum.  Everyone is fighting their own battles daily.  Please don't be a victim.  Be a person that overcomes.  Be positive.  Be thankful.  Things could always be worse?

 

You WILL overcome and get some livable sleep back, it may not be perfect or the amount you want and it might not be "refreshing" at first, but it can come back to the point where you can enjoy life again.

 

NEW 7/13/21

 

As a side note, and not trying to "school" people, but according to sleep expert Dr. Michael Breus, your Circadian Rhythm and Sleep Drive (a lot like hunger) need to be in sync in order for sleep to occur.

 

When a cell in your body "eats" a piece of glucose something comes out the back end and that's adenosine.  As adenosine works its way through your blood stream, it goes into one particular spot in your brain with particular receptor sites.  As these receptor sites receive or fill up with more and more adenosine, you usually get more and more sleepy.  This is your Sleep Drive.  When adenosine binds to its receptors, neural activity slows down, and you feel sleepy

 

The molecular structure of adenosine and caffeine are only off by one molecule!  So caffeine fits perfectly into that same receptor site in your brain and blocks adenosine from attaching and making you sleepy.  That's why caffeine keeps you awake.  And that's why many get a "caffeine crash" or feel tired and sleepy after the caffeine they consumed leaves the receptor sites and adenosine comes rushing back in.

 

Sleep Drive isn't the only system for sleep.  You also have your Circadian Rhythm.  Just like most people tend to get hungry around breakfast, lunch and dinner time, most people start to get sleepy around 10:00 - 11:00 pm at night.  Some earlier, some later, but regardless this is your Rhythm.

 

When your Sleep Drive is high and your Rhythm is locked, sleep occurs fairly easy.

 

However, if either one of these (Drive or Rhythm) is off, you can have a sleep disorder.

 

You can have a high sleep drive but an "out of sync" Rhythm or vice versa.  Then sleep is hard to come by.

You can get in bed and feel exhausted (high sleep drive) but your Rhythm is off so it's hard to fall asleep!

 

Adenosine binds to G protein-coupled receptors in your brain. There are four known types of adenosine receptors in humans: A1, A2A, A2B and A3

Adenosine binds best to A1 receptors.

 

Benzodiazepine treatment may diminish A1- receptor binding in-vivo by inhibiting adenosine uptake or by direct occupancy of the A1 adenosine receptor recognition site. (https://pubmed.ncbi.nlm.nih.gov/1359103/)

 

This could explain how Benzos induce insomnia along with down regulated GABA receptors!

 

Added the information below 12/01/21

 

Most of the information below is listed above...I am working to merge the two, but didn't want to leave anything out

 

What to expect:

 

1) Lots of very little or no sleep for an extended period of time. Not sure how long that will be, but Ashton says at least 6-12 months for most.  Some 12-24, and a small percentage 24 months or longer.

2) Drugs are a dead end road.  Drugs = artificial sleep.  Tolerance is reached in X amount of time (different for everyone) then the dose must be increased for the drug to have the same effect.  That is why you should try to avoid all Rx drugs, not just Benzos.  All of them have side effects and possible withdrawal?

3) Natural supplements are also not advised either.  Why?  You emotionally and physically convince your already weakened brain that it must take something in order to sleep.  I know...easy for me to say now that I sleep pretty well most nights.  I tried them all too and they didn't help much early on or later during my withdrawal.  There is also new research regarding melatonin, it is actually a hormone that the body produces and daily supplementation could lead to the body not producing it any longer.  It is meant to reset your internal clock and is designed for short-term use only.

3) Benzos are short-term use only drugs (2 - 3 weeks max) that doctors love to prescribe for whatever length of time as most don't know about withdrawal or even acknowledge it exists.  Benzos shut down or suppress your Gabba receptors in your brain; what helps you remain calm and relaxed.  When those stop working, Glutamate takes over and it is what makes you active and alert.  That is why you can't sleep.  Your sleep switch is broken.  It takes time for your sleep switch to fix itself.  Unfortunately it is not like breaking a leg or arm where healing times are pretty consistent.  See #1 above for time.

4) Most people won't understand what you are going through, even your spouse, boyfriend, girlfriend, family, etc.  Outward you look normal, inward you are messed up, but they can't see that.  They might have a hard time understanding, accepting or even having sympathy for you.

5) It gets better over time.  Time allows your brain to "learn" how to sleep again on its own, without any type of drug or supplement.  All brains heal...just as drugs affect all of us differently, all brains heal at different speeds.  That is why some people can be on a Benzo for 10 years or longer before they reach tolerance and some people never go through withdrawal; however, almost everyone experiences some form of insomnia.

6) The amount of time you were on Benzos does not = how fast you will recover.  In some cases it does, but for others it does not.  I was on Benzos for 6 months and recovered fairly quickly, but others that were on only a few weeks took longer to recover.

7) Recovery will be up and down, like the stock market (well maybe that's not a good example as it has been doing well this past year) but you can expect to have some good days and bad days with the good days eventually becoming more frequent than the bad days and finally becoming almost or all goods days over time.

8) Immediately after going Benzo free, either through a proper taper or cold turkey, you will most likely experience "acute withdrawal" a period of usually 30 - 90 days of intense withdrawal symptoms and lack of any real sleep.  I went 4 days without any sleep after I went cold turkey on a doctor's advice.

9) Things slowly get better, usually you will notice a difference by month 6.  But it is slow.  Sort of like how we transition from summer to winter and back again...the days get longer and shorter very gradually.

10) Windows and Waves. Windows are good periods where your symptoms reduce or go away and you feel better.  Waves are crummy periods where your symptoms are at their worst and you feel like crap and sleep sucks.  Most people alternate between Windows and Waves until eventually the Windows last longer than the Waves and the Waves mostly or completely disappear over time.

11) When sleep starts to return, it will be light and broken (you will wake up a lot) and most people experience REM REBOUND or lots of dreams.  Later on your sleep will slowly turn to deeper sleep with less dreams and longer periods of sleep before waking up.

 

What you can do:

 

1) Be as POSITIVE as you can be given the crappy circumstances.  Try to laugh if you can.

2) DISTRACT yourself as much as possible.  Focus on anything that gives you enjoyment.  Don't focus on NEGATIVE things or hang around NEGATIVE people

3) Do not try to FORCE yourself to sleep.  It is not possible.  You cannot make yourself sleep no matter how hard you try.  It happens naturally when you are relaxed and NOT thinking about it.

4) ACCEPT (very hard to do for most) your situation and know that there is an end to it, it won't last forever.  It is only TEMPORARY!

5) Try not to CARE if you Sleep or Not.  When you stop caring if you sleep or not, it will slowly start to return.  Again, difficult to do, but others that have regular insomnia not caused by drug withdrawal cured their insomnia by not giving a rat's butt if they slept or not.  Takes time, is difficult to do, but works for most.

6) Eat Healthy, Drink lots of water, Exercise even if you don't feel like it or think that you can do it because you are too tired.  Also, be careful with caffeine.  Caffeine is a stimulant.  Some folks have no issues drinking coffee or soda during withdrawal; others are affected by it.

7) Be careful with supplements.  Some may excite your already sensitive nervous system. Some worked for me.  Mostly Green powders for a shake.  Again, try some experimentation to see how you are affected.

8) Pray.  Some of you may not be a "believer" in God, but prayer works.

9) Maybe take a break from this site for awhile, when you can, and it works for you.  This site is a tremendous help for many, but I found myself making other people's recovery process and experience my own.  I took about a 5 month break and did an amazing amount of recovery during that time.  I came back as I promised to help others get through withdrawal and because I don't think people should go through this ordeal alone.

10) ACCEPT the RECOVERY PROCESS and don't put a time frame on it for getting better.  For example, don't expect to get better by month 8 because someone else did.  In the same light, don't expect it to take 5 years or longer either, as it may have for a very small percentage of people on this site.

11) Seek counseling when beneficial and affordable.  It helped me cope when I was at my worst.

12) Be THANKFUL for any sleep you do get.  Some light sleep is better than no sleep.  Practice GRATITUDE for whatever you can in your life.

 

Final parting words:

 

You don't have FATAL Insomnia.  I thought I did, many others did/do too.  You don't have that, it's all withdrawal.  Lack of sleep will NOT kill you.  A drive by shooting could, but sleep deprivation will not!

You often get more sleep than you think, even microsleep (that most are unaware of) helps keep you going when insomnia is at its worst.

If you can't sleep, just lay in bed and do your best to relax.  Laying still can still help your body recover a little versus getting up and doing something or freaking out over the fact that you are not sleeping.

Even after you recover, expect some "off" or "bad" nights of sleep from time to time.

Never take another Benzo, ever, don't keep any in your house and don't see a doctor that will write you another prescription.

Don't Google sleep related diseases or "possible" things that could happen to you from lack of sleep.  It only adds fuel to the already out of control fire in your mind.

Acupuncture did not work for me, neither did CBT (Cognitive Behavioral Therapy), sleep restriction, or other methods of "alternative" ways to help with sleep.  These might work for some people after their nervous system settles down?  But keep in mind almost nothing (except another Rx drug) will touch Benzo-induced insomnia.  It can't because sleep hygiene isn't the issue.  It's down regulated or damaged GABA receptors that need to heal and/or regrow.

There are not "magic" cures or special supplements you can take from some exotic land to get past recovery quicker.  I paid $7,000 to go to the Coleman Institute in Virginia to try his Flumazenil treatment for 1 week and that may have helped speed up my recovery but I have no way to know that and if it did work it certainly was not immediate.  Unfortunately the only way out is through the recovery process.  It is difficult and no fun at all, but you will get through it, eventually.

Read the Success Stories on this site for hope and encouragement.

Be mentally as STRONG as you can be and consider this a FIGHT.  FIGHT to get your "old" life back.  I was mentally SUPER WEAK after jumping CT.  I got a lot stronger mentally over time.

Be careful with ALCOHOL or anything containing alcohol as it acts on Gabba just like Benzos.  My advice would be to completely avoid all forms of alcohol including those in OTC remedies.

Most of the time, whatever you were experiencing or caused you to go on Benzos in the first place, is much easier to deal with.  If you started taking Benzos for sleep, then after recovery, you will typically have the tools and coping mechanisms to deal with a poor night of sleep much better than you did before you started taking Benzos and especially after you are healed.

Almost all of the people that suffered the most and had the worst insomnia on this site eventually healed to some degree.  Not always to 100%, but enough to lead an acceptable life.

This process will make you incredibly strong and make you grateful for each day.  You will have a newfound appreciation for life in general after you are healed.

 

Work to inform your doctors and health care providers that Benzo withdrawal is real.

 

New: 02/03/22

 

This information will most likely not help anyone while they are in the thick of Benzo-induced insomnia?  But after your sleep starts to even out this might help?

 

Have you ever wondered why eating your favorite dessert instantly brings a smile to your face? Well, all this happens because there are some chemical shenanigans that are happening in your brain. Yes, we are referring to the hormones of happiness that are secreted inside your brain.

 

Instead of just waiting for hormones to be released, hack all four happiness hormones to motivate yourself to have healthier habits, leisure time, and relationships.

 

1. OXYTOCIN

 

Functions as the bonding hormone in childbirth, breastfeeding, sexual intimacy, empathy, compassion, love and cuddles.

Boost this hormone by doing these activities:

Cuddle your pet

Be gentle with the people you love

Give a compliment

Hug for 20 seconds

Experience skin-on-skin contact

 

2. SEROTONIN

 

Helps regulate your mood as well as your sleep, appetite, digestion, learning ability, and memory.

Here’s what you can do to hack serotonin:

Enjoy the Sun's warmth

Start with aerobic exercises such as running or cycling

Meditate to calm the soul and body

Escape from the city and walk in nature

 

3. DOPAMINE

 

A neurotransmitter that enables motivation, learning and pleasure and gives you the determination to accomplish your goals, desires and needs.

Here is what you can do:

Eat your favorite foods as a treat

Be grateful for the little wins in life

Always listen to feel-good music

 

4. ENDORPHIN

 

Your body’s natural pain reliever, which your body produces in response to stress or discomfort.

How to hack endorphins:

Laugh with friends, watch or listen to a comedy

Be creative through art or design, gardening or anything that gets your juices flowing

Use aromatherapy oils like rosemary, lavender, citrus

Exercise moderately and get your heart pumping!

 

Have trouble falling or staying asleep? Tossing and turning, not being able to switch your mind off, or dealing with muscle aches and stress can all contribute to poor sleep.

 

Regardless of how often you experience these problems, acupressure can provide natural relief. Some pressure points can indeed help for a better night, and while acupressure can of course be done by professionals, you can also do acupressure on yourself at home when you get into bed.

 

Here are some specific acupressure points to promote sleep and activate restfulness.

 

1. Taixi

 

Access this pressure point by pressing on the inner portion of the ankle, between the ankle bone and Achilles tendon. This gentle massage helps to relieve insomnia and regulate blood pressure.

 

2. An Mian

 

If you have heart palpitations or suffer from anxiety, try a massage of this point. It is located just behind the bony protrusions behind your ears. Use light pressure and gentle, circular movements to activate this pressure point.

 

3. Taiyang

 

By stimulating the temples, you can soothe headaches and stress. Use your pointer and middle fingers to apply even pressure to your temples in circular motions. Inhale deeply 10 times as you circle each temple.

 

4. Tai Chong

 

Press down firmly about two finger widths above the point where the skin of the great toe and second toe meet. Hold for three minutes, and repeat on your other foot. This pressure point aids in relaxation and anti-anxiety for improved sleep.

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  • 2 weeks later...

Thank you for your post that was very well written and informative.  I am tapering off of 2 mg of Xanax.  I was on it for almost 3 years gradually increasing doses as I became tolerant.  I have worked with nutritionists and I’m taking taurine, glycine, l-thenine to help ease withdrawal symptoms.  What I struggle with is not knowing how much to taper and  if a longer taper will ease the withdrawal symptoms once you stop or (PAWS).  I’ve done a lot of research as you have and in my mind I feel if it takes time for the receptors to heal then it would make sense that slow your taper to avoid PAWS.  I haven’t been able to find any constant guide as everybody is different.  I am not sure if I should switch to Valium or not if that will help. 

 

I started tapering on May 6 2022. I went pretty fast for the first two months.  I was listening to my body and obviously we have no guidance from psychiatrist and doctors.  The ashen manual is also not 100% OK for everybody. 

 

May 6. 

Start 1.5 mg

May 11.  1.25 mg

May 15.  1mg

May 26.  .75mg

June 6.  .5mg

June 7 .75mg

June 8.  .625mg 

June 9.    .5mg total

June 10.  .75mg

July 4.  .625mg

July 15.  .5mg

August 1.  .375mg

August 15. .25mg

August 21.  .31mg

 

Like most others I had no idea what I was facing but there was always a pattern of four days to adjust my sleep would be a little disturbed but for the most part I would get 5 to 6 hours per night.  I have muscle twitching watery eyes stomach issues such as gas and noises.  I went through being scared and then doing the research and educating myself.  I’m still nervous and afraid at times of the unknown and what this has done to me but Of course once I realized I was on my own and that the doctors could not offer any guidance, I found this forum and it made me feel empowered and that I’ve got this and it will end.  Since August when I got to .375mg I haven’t been able to regulate like I did before as far as from beginning to end there was no change, much more muscle twitching and the symptoms stayed constant for two weeks so I thought OK just keep going and I went down to .25mg for 6 days.

 

  Sometimes I read things that make me feel as though if your brain needs more time you’re at too low of a level if you’re not experiencing leveling out before you cut your next dose.  For the most part I’m sleeping at least five hours a night, I thought I would be done with this by September and now I have no idea.  I don’t wanna go through PAWS especially after all the time tapering what’s the point of tapering if you’ve got to do that eventually?  I just wish there was a better guide to is it worthwhile to taper longer keep yourself comfortable to avoid bad withdrawals.  Or are you just delaying the inevitable.  I think the answer is we don’t know and that’s the most frustrating part to me. As well as at this point should I switch over to Valium?  If anybody has advice or experience relating to that I would appreciate any input. 

 

 

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  • 4 months later...

Miss u mate. Just reading this again and so greatful it’s here to remind me it’s all ok x

 

Santa gave me an 18 month wave for Xmas 🎅🏻

 

Thanks Santa 🤘

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  • 2 weeks later...

Hello,

 

I can't. Do this. My body won't give in to get enough sleep to heal "lbefore it kills me my body won't get the sleep. It will kill me. Or get me sent to osychiatry bound to that "bed". Believe me. The reason ny doctors hooked me on those pills wasn't to make me addicted but to save my life. My body won't give up. it won't sleep. My body will deteriate but especially my mind. They know it. I will bang my head on walls doors objects, I will go to places to do impulsive stuff. My brain may become sonething like psychptic I believe. I cannot afford to miss sleep. I know what I will do, they know. And in psychiatry they will just give md more to get me quiet. And neuroleptics worsening ny other bad insomnia issue my very severe advabce 24h/7 Restlesalegs. Which were caused by neuroleptics. I will die if I don't get sleep. My body won't give it to me. While I am sane I have to triumph over it. Like minds clashing. I don't know. I am psychtric and neurologically very sick and despite having all these doctors and therapists...they dont help me. neurologist, neuropsycholpgist, psychiatrist, psychotherapists, housedoctors. I am having a breakdown. I took 10% less of my 1mg Lorazepam (and had to take more of Gabaprntin I take abput 3000mg for RLS and nerve pain) tgen i still cpuldnt sleep. RLS was worse my mind was worse just wont go sleep. I took 1mg more...so abput 2mg again. It begins more often. Somedays i can still sleep withput 1mg but I cannot aleep withput it anymore. And when I did my mind started to deteriate on missing sleep and I went bpnkers again. Having my friends and family deal with psychotic me os out of question. Having the psychiatry do mpre damage too. I don't know what to do. Maybe I should just let go and rather be addicted. They still give me the pills. If not yeah. They will force:taper how they see fit. I realize again how hopeless it is even when I seek out help. But maybe it is just my depression. I can have deep episodes of it. Cycling. I hope this isn't ibtruding on your post. Honestly as they told me I "sound miserable" and yes. I am being let down by medical care. They made me worse during 6 month psychiatric forced stay. forced meds. unleashing more insomnia more mental issues. they didnt heal me. I feel like a monster.

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  • 4 weeks later...

Unfortunately almost everyone on this forum is having sleep issues induced by Benzos, or Benzo-induced insomnia.  Sleep apena is a totally different animal and really doesn't have anything to do with insomnia caused by coming off of Benzos. 

It's highly unlikely that people on this forum are having sleep issues related to apnea?  It's not impossible, but extremely unlikely. 

GABA receptors need time to heal and it takes time for sleep to return. 

People with apena still sleep, but stop breathing x number of times per minute, but still sleep, that's why the sleep is not refreshing.

People with Benzo-induced insomnia do not sleep much or at all regardless of whether there is apnea present or not.

Keep in mind there is a huge difference between sleeping with apnea and not getting restorative sleep and not being able to sleep much or at all because of Benzo-induced insomnia caused from down-regulated GABA receptors.  Sleep apnea has nothing to do with GABA receptors being affected by a Benzo.

 

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Just to mention that if anyone is taking benzos with any firm of opiate, you are very likely to develop sleep apnoea as the 2 drugs act as respiratory depressants.

Nobody told me this and I had to use CPAP for months until Dr Google showed me that the apnoea was caused by the drugs.

Since I’ve been off benzos, apnoea much improved and no need for CPAP………thank goodness!

Hardy x

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TheWay.... I will love you forever for your comprehensive post on sleep and withdrawal.  I've struggled with insomnia waves throughout my post benzo journey..... now at 14 months post jump.

I have this trend where I'm getting 4 or 5 or more hours of broken sleep....and I'm thrilled... thinking "this is it!, I've turned the corner".... then Wham, I'm vibrating,  sweating, and back in a wave.  Waves that don't follow rhyme or reason....

I was, just this week, talking myself into this reality where my insomnia is 'special' and different than others. 

Thank you thank you thank you, for being a voice of light and reason.....

I've just added this post to my homescreen where it's easy access....

Bless you....

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Question, I have to take mag citrate for gi issues.......if i do not take it my constipation is awful.........will this affect my sleep and over all recovery? I am kind of stuck taking it.
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Anyone else  have tinnitus? I’ve had this for 7 months. Does it go away? Any tips on sleeping with it?

 

It might be a good idea to start your own thread about this subject, I know many have this issue.

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Hi ThEwAy2,

 

Hoping you could give me some guidance, we seem to have the same symptoms. Insomnia and constipation. I understand you took mag citrate like i am. How long did you take it before everything got better? I am taking 200 mg every night, which helps but i feel like i'm getting dependent on it.......did you have to taper it? how did you know when you no longer needed it........im 9 months post jump and every time i dont take it, things get backed up immediately.........thanks

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ThEwAy2

 

Thank you, been a big help. We have the same issues.............. insomnia, constipation and tinnitus. Although i also have akathisia, which has so far been has been controlled with propanolol....appreciate all the input. Trying to keep the faith that this will get better.

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Thanks for your reassuring and encouraging message. 

I admire the kind of willpower and determination you managed to find in yourself to get through your situation, and am hoping I can find some of that too as I deal with mine.  

I have been "chanting" what you said in this thread - "Insomnia's days are numbered" - to help deal with occasional anxiety and frustration I experience.

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Willpower and determination are something you develop over time.  I was very weak mentally when my WD started.  It took a long time to get mentally strong and accept what was happening to me.

 

Having a daily mantra is a good thing.  Insomnia's days are numbered and they can only last so long.  Time is on your side and time is the healer.

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