Sleep or rather lack of it - What to expect - What can you do

[[Th...]]

Regarding a timeline when sleep will return.  I wish I could give one and I could, but would probably be wrong.  But note that sleep gets better the longer you are off.  It will get to the point where life is livable again.  I wish I knew when that would be for nightingale and runnergirl, but all I could do is guess.  But it will happen.  It took me 9 months to start getting some sleep every night. Like I said, I wish I knew when that would be for you.  It is scary to read that some people have been off 2, 3 even 4 years and longer and still don't sleep well.  Don't make their story your story. If you didn't have sleep issues prior to going on Benzos, or if your sleep issues just started later in life, then they will almost assuredly mostly or completely clear up over time.

 

Another buddy told me at the end of 2016, when I asked the same question: "when would I get some sleep every night," that it would be by mid 2017.  He was right.  I started getting 3-5 hours per night in April 2017.  It wasn't the best sleep and it wasn't how much I wanted, but it was enough to start living a normal life again.  It has gotten a lot better since then. 

 

In the meantime, you just need to double down on your resolve and get through your insomnia the best way that you can.  I had a friend tell me, "who cares if you can't sleep, just think of all that extra time you have to get things done around your house or just watch TV."  LOL.  I never did much housework much to my wife's dismay...but I did lay in bed and pray and rest.  I tried reading, but couldn't do that...I didn't want to risk the chance that I might nod off. 

 

Insomnia sucks, but once we realize and accept that it won't kill us, we can deal with it better.  And as you know, chasing it too much only makes it harder to come by.  Dr. Mark Hyman said he only slept 3 hours a night and not as a result of taking any type of Rx drug.  He just released a book called "What the Heck Should I eat". He said just changing his diet allowed him to now sleep 7-8 hours per night every night.  So aside from eating healthy, exercising and drinking lots of water, you just have to ride this out.  But keep telling yourself it is TEMPORARY.  Stop worrying about sleep and it will take care of itself over time.

 

God's speed to everyone still not sleeping as well as they would like.

[[Ru...]]

Thanks everyone for your replies......I know, I am sick of complaining about not sleeping....I am going to listen to all of you, It will come back....I was on these Poisons for a long time, and it is going to take time...  Just look at Mt fan and Alohafromhawaii and all of the other people on these poisons for a long time.....they got better in time... I have to suck this us and believe and know that I will sleep again.

 

TheWAy2.....I really like Dr. Mark Hyman........I just heard about his new book and am going to get it.....How did you find out that he only slept 3 hours?  Is there a bio on him, if so, let me know.  He is pretty impressive.

 

One last question and then that is it!!!!.....  Ok, why do I never get sleepy...will sleepiness eventually come? 

[[Th...]]

Thanks everyone for your replies......I know, I am sick of complaining about not sleeping....I am going to listen to all of you, It will come back....I was on these Poisons for a long time, and it is going to take time...  Just look at Mt fan and Alohafromhawaii and all of the other people on these poisons for a long time.....they got better in time... I have to suck this us and believe and know that I will sleep again.

 

TheWAy2.....I really like Dr. Mark Hyman........I just heard about his new book and am going to get it.....How did you find out that he only slept 3 hours?  Is there a bio on him, if so, let me know.  He is pretty impressive.

 

One last question and then that is it!!!!.....  Ok, why do I never get sleepy...will sleepiness eventually come?

 

Hi Runnergirl,

 

Keep the questions coming.  That's what we are here for!   If you don't have any questions, then I don't have anything to say.  LOL.  Seriously, keep them coming.

 

I saw Dr. Hyman on a Public Television Broadcast yesterday.  It was 90 minutes long about his new book "What the Heck should I Eat?"  During his presentation, he said he gained 30lbs and developed a bunch of symptoms, was only sleeping 3 hours per night, and was going to need surgery for something (knee?).  He changed his diet and started sleeping 7-8 hours per night, lost the extra weight and didn't need the surgery.  I ordered the book off Amazon and I am supposed to have it Wednesday!    It was $15.82 or something like that.

 

You are not tired because the Benzos down regulate your Gabba.  Gabba makes you relaxed and calm.  Your body quit doing that on its own when you started taking Benzos.  Your body got used to you taking a Benzo to calm everything down.  Now that you quit taking the benzos your body needs to figure out how to "fix" the damage to the Gabba receptors so you can be calm and sleep on your own again.  In the meantime, Glutamate rules the day.  Glutamate is what makes you active and alert.  The fight or flight part of your brain chemistry.  Right now Glutamate is dominate and that is why you are tired, but feel wired.  You won't get sleepy or hardly yawn even after you haven't sleep for a day or two.  It doesn't make any sense.  It always freaked me out.  I thought to myself, "I haven't slept for 72 hours straight, why am I not even tired."  Eventually your Benzo damaged Gaba receptors will begin to function on their own again and you will get tired and sleepy.

I was where you are one year ago.  I still get some nights where I don't feel tired either, but then have lots of nights where I get so tired I cannot stay awake even if I wanted to! 

 

It will even out and get better for you too.  One year ago I still thought recovery was a myth and only happened to other people and I was somehow a "unique" case or the "exception to the rule" and I would never get better.  Then on March 31, 2017 I started sleeping 4-5 hours a night and it has pretty much lasted ever since except for the 1 month wave I had from January 22 to Feb 18.  The other thing that happened is that I went from 4-5 hours up to 5-8 hours most nights and even had a few 10 hour nights every now and then.

 

It will get better, I know it will.

[[st...]]

TheWay2 I enjoyed the post you did not put any BS in there at all and that is what we have to realize. I learned my lesson, I know what to expect and hope to be able to one day be able to say I am a half way healed. Thank you that was well written an realistic.  Things you do not get from Dr.s sleep clinics, or posts that swear by this snake oil or that. Anything to get us to buy some miracle cure for something that seems impossible to beat. Thanks again for the hope and the post.

[[Wo...]]

Awesome post!!!! Thank you so much!!!

[[Ru...]]

Hi ThEwAy2- Yes, I will keep the questions and complaining coming!!!  Because that is what we are here for...to help each other....not to ridicule.  Myself and I am sure for others, I don't know where I would be without this site.  So much encouragement and this is what we need, I know I DO!!!  Thanks for explaining everything that is going on in our brains.  This reassures me so much... I have so many printouts from you that I look all the time for encouragement.  Where would we be without this info? 

 

I too, get "freaked out"  that I think I am a unique case....and I am the only one like this....and that I am the only one who will not recover.  Yes, I know, doom and gloom..that's me.  I tried to nap today, but nope, no sleep, just lay there on the couch and close my eyes...but I did feel refreshed...sometimes I do, sometimes I don't.  I told a good friend what I was going through and she said that I am not in withdrawal anymore....(she is a retired nurse)...I just stared at her and kept my mouth shut....she is so WRONG, JUST LIKE THE DOCTORS....

 

I have to get Dr. Mark Hyman's book.....I will see if our library has it first.. I see him on the Dr. Oz show alot...

 

 

 

 

 

[[Th...]]

Hi ThEwAy2- Yes, I will keep the questions and complaining coming!!!  Because that is what we are here for...to help each other....not to ridicule.  Myself and I am sure for others, I don't know where I would be without this site.  So much encouragement and this is what we need, I know I DO!!!  Thanks for explaining everything that is going on in our brains.  This reassures me so much... I have so many printouts from you that I look all the time for encouragement.  Where would we be without this info? 

 

I too, get "freaked out"  that I think I am a unique case....and I am the only one like this....and that I am the only one who will not recover.  Yes, I know, doom and gloom..that's me.  I tried to nap today, but nope, no sleep, just lay there on the couch and close my eyes...but I did feel refreshed...sometimes I do, sometimes I don't.  I told a good friend what I was going through and she said that I am not in withdrawal anymore....(she is a retired nurse)...I just stared at her and kept my mouth shut....she is so WRONG, JUST LIKE THE DOCTORS....

 

I have to get Dr. Mark Hyman's book.....I will see if our library has it first.. I see him on the Dr. Oz show alot...

 

Runnergirl, all it takes for me is one zero night and I am right back to thinking I am "unique" and have some terrible form of WD that no one else in the world has!  I had 4 zero nights during my month long wave and good thing they were not back-to-back   LOL.  Now I have had one month of pretty good sleep most nights since then   I still get that night here and there where I don't feel tired and wake up.  Not only do I wake up, but feel like I drank a pot of coffee.   But, I usually fall back to sleep again after an hour or so. 

 

I get Dr. Hyman's book tomorrow.  I will let you know if it is worth it or not!  I need to watch Dr. Oz more, but I am usually still at work!   Regarding those trained in western medicine...they are clueless.  I give them credit as they really believe they are helping by quickly writing Rx scripts for any and every ailment under the sun.  If they actually looked into what they were really doing (not treating the underlying cause of your symptoms) they might change their Rx drug script writing?  Doubt it though...too much money involved!

 

 

 

 

[[wh...]]

Hi Runnergirl I can understand how you must have felt when that nurse said this cant be withdrawal It is very shattering to hear this especially from those in medical field .I am the living example of how benzo can mess up your whole life even if you take them for just three months .Prior to benzo I never had trouble sleeping . I was a decent sleeper Some unfortunate events led me to benzo After cold turkey my body has gone through hell. From insomnia to depression to anxiety to hypochondria -name any mental illness I am going through all of them .

 

It is only on this forum I share my problems. If I talk to any doctor about it he will never agree this is withdrawal and on the top he will advise me to take anti depressants

 

This is my fifth month after cold turkey . I started getting some sleep this month which is a positive sign But last two days I was unable to sleep . It scared the hell out me. But now I have decided to surrender to God . I have also decided that if insomnia strikes back this week then I will not take any phenargan (promethazine) . I took it for two days continuously Though it made me sleep but I was getting anxious and depressed for no reason the next day .Even a two hours of sleep minus OTC sleep aid is more refreshing than sleeping 6 hours with sleep aid

 

So in case, I am unable to sleep today I have decided I will keep on lying on my couch Do some mantra chanting. By 3 PM the brain will automatically shut down . Withdrawal is like a battle with our own brain . Only our will power can break it .

 

 

[[Th...]]

Moving this back to the top of the Insomnia board as there are some new people that should read it.

[[So...]]

The day before yesterday I was so exhausted from lack of sleep I finally crashed on my bed after a good cry and took an awesome nap and woke up somewhat refreshed. Gave me enough energy to go to the pool to quench my burning skin. I haven't had a nap like this in weeks (I forgot to count). Then Saturday evening I was feeling so sleepy, I slept four hours straight; but after I woke up it took sometime get back to sleep, but I slept three more hours. This felt like a great window for me. Didn't have the horrendous headache, burning skin, nor my GI issues. However, last night I developed a bothersome headache, I decided to take an ibuprofen and my sleep was so broken and my GI issues worse. If I didn't have these headaches everything would be so much bearable for me. I wasn't a headache sufferer before benzos; so it has to be withdrawal. I stopped taking herbs, don't take any Rx, some supplements. I feel that my sleep is starting to come back. However I am thining to pay a visit to my GI doc, and I am having anxiety over this a bit. It is just incredible that w/d is so non linear. I have to say that I am really quite impressed how my body is responding from not sleeping much and how functional I can be most of the time. This is truly a life changing experience, and I pray that all of us heal 

[[Th...]]

Yes, unfortunately Benzo WD is a life changing experience.  You will heal, we all heal, but it is very nonlinear.  You could feel good for a few days, a few weeks or even a few months and then get hit by a "wave" and have your symptoms ramp up and your sleep get poor again.  The Windows/Waves process takes a long time for most to eventually even out and get to the point where the good days outnumber the bad or poor days. 

 

Keep fighting, keep praying and keep being positive.  You'll make it through this one day.

[[Ka...]]

Hi Runnergirl I can understand how you must have felt when that nurse said this cant be withdrawal It is very shattering to hear this especially from those in medical field .I am the living example of how benzo can mess up your whole life even if you take them for just three months .Prior to benzo I never had trouble sleeping . I was a decent sleeper Some unfortunate events led me to benzo After cold turkey my body has gone through hell. From insomnia to depression to anxiety to hypochondria -name any mental illness I am going through all of them .

 

It is only on this forum I share my problems. If I talk to any doctor about it he will never agree this is withdrawal and on the top he will advise me to take anti depressants

 

This is my fifth month after cold turkey . I started getting some sleep this month which is a positive sign But last two days I was unable to sleep . It scared the hell out me. But now I have decided to surrender to God . I have also decided that if insomnia strikes back this week then I will not take any phenargan (promethazine) . I took it for two days continuously Though it made me sleep but I was getting anxious and depressed for no reason the next day .Even a two hours of sleep minus OTC sleep aid is more refreshing than sleeping 6 hours with sleep aid

 

So in case, I am unable to sleep today I have decided I will keep on lying on my couch Do some mantra chanting. By 3 PM the brain will automatically shut down . Withdrawal is like a battle with our own brain . Only our will power can break it .

 

Thanks for sharing your journey. I am in the same boat as you. I have not told my doctors anything because I don't think that they will agree with me and will tell me to go see a physiatrist who will, in turn, prescribe something like Seroquel. I have been to two of them in the past few years, one put me on Seroquel and one put me on blood pressure medication. The Seroquel made me feel terrible and the blood pressure medication did not help me sleep at all, I just had to get up and go pee all night. So much for helping with insomnia, which is why I got on benzo in the first place was for insomnia.  There is no pill for insomnia that is good to be on for over 10 -20 years.

[[az...]]

Need to see this on my feed, thank you.

[[Lu...]]

Bumping this because it’s helped me so much

[[Ru...]]

Just read this post by ThEwAy2......how your sleep fluctuates in withdrawal.... boy, did I need to see this.  I have been sleeping somewhat ok for the past month...not great by any means, but a slight improvement.  Then WHAM, the last few nights I have had no sleep at all.  Up all night...Sometimes you don't believe it is withdrawal...I ask myself, "what is causing this" when I know the likely answer is withdrawal, just as ThEwAy2 and others have said.

 

I just have to remind myself that even though I have been off Klonopin for 10 months ( after being on it for 7 years).

And have only been off Amitriptyline for 4 months ( after being on it for 7 years) that this all has to be withdrawal.  I have never felt like this before. 

 

This is the only place I come for support, besides my husband and family, .....I suspect it is the same for all of you. Doctors are of no help whatsoever.

 

Thank you everyone for your support and optimism.

[[MT...]]

Yeah, Runnergirl, those setbacks are hard to take. Your mind loves to trash talk you during those times and tell you that you've made no progress and that it's hopeless. Don't believe the propaganda campaign. While it totally sucks when sleep flees like that, it passes. I'll often repeat to myself phrases like this:

 

-My brain knows what it's doing. It's healing and doing the very best it can.

-I've been through worse. This will pass.

-I can survive without sleep as long as I get rest.

 

I remember how discouraged I was when I'd been off benzos for around 20 months and jumped off amitriptyline and had months of sleepless nights. On one hand it was liberating to finally be drug free but on the other I would get simply terrified that my brain was, and would remain, incapable of sleeping. My mind wanted to convince me that I was permanently brain damaged. BB helped me remember that yes, wd can last that long and be that severe. Eventually, in fits and starts, with itsy bitsy steps, sleep started returning. So baby steps will get you there. Remember, babies fall on their bums all the time but we still celebrate each step they take because that's how they learn to master walking.

 

MT

[[Ka...]]

Yeah, Runnergirl, those setbacks are hard to take. Your mind loves to trash talk you during those times and tell you that you've made no progress and that it's hopeless. Don't believe the propaganda campaign. While it totally sucks when sleep flees like that, it passes. I'll often repeat to myself phrases like this:

 

-My brain knows what it's doing. It's healing and doing the very best it can.

-I've been through worse. This will pass.

-I can survive without sleep as long as I get rest.

 

I remember how discouraged I was when I'd been off benzos for around 20 months and jumped off amitriptyline and had months of sleepless nights. On one hand it was liberating to finally be drug free but on the other I would get simply terrified that my brain was, and would remain, incapable of sleeping. My mind wanted to convince me that I was permanently brain damaged. BB helped me remember that yes, wd can last that long and be that severe. Eventually, in fits and starts, with itsy bitsy steps, sleep started returning. So baby steps will get you there. Remember, babies fall on their bums all the time but we still celebrate each step they take because that's how they learn to master walking.

 

MT

 

I have been on benzos for 5 weeks now. Now my sleep is like this I sleep from 11 pm - 2 am or so, then I am awake the rest of the night and try to go back to sleep but cannot. I am chronically exhausted, depressed and I think because I am super tired it makes me have really bad self esteem. I just see a fat slob in the mirror, even though I am not that fat. I have super low self esteem, is this because I feel like a failure because I cannot sleep? I really do feel like a failure because I thought by now I would be sleeping. I am super grouchy, but I don't feel like going back on medications. Any good word for me?

 

[[Ra...]]

Thank you for the encouraging words on insomnia...

I have not done the alternative drugs, but have taken supplements as I was before and my docs feel

they are I should continue for another complex blood condition.

I am not sure if it is affecting my recovery; I Harv had now several weeks of fairly decent sleep albeit mixed with nights of sleeplessness. These nights I do not get as anxious, but the depression is severe

Yoga/ cardio help alot. I wish there was a Benzo buddies live cast as it is really hard at night to get through the negative thought process that creeps in.

Thank you for all you shared it is really hopeful.

[[MT...]]

Hey Karenpug.

 

I'm not sure whether you meant to say that you've been off, not on, benzos for 5 weeks but I suspect you meant you've been off that long. If so, pat yourself on the back for making it this long.

 

Sleep deprivation causes all sorts of temporary changes in the chemistry of the brain and nervous system that make us prone to very negative, depressed, and irritable thinking. The loss of self-esteem seems to be part of this. Your mind may be telling you that you're a failure for not sleeping at this *very early* stage in your recovery but you can remind yourself that this is just your mind trash talking you. It's not a fact. Your mind is going to spill out all sorts of crud that will feel very credible and very intense but that doesn't make any of it accurate.

 

I found, and still find, Acceptance and Commitment Therapy concepts very useful. Letting go of the struggle with sleep and observing, rather than engaging with thoughts, are two parts of it. Here are some videos on it if you want to learn more:

 

 

I periodically rewatch them to get them back in my brain and help me calm down. Give yourself time. Your thinking will straighten out and your sleep will return. I know that probably sounds like a pile of hooey right now. Try to trust those of us who've been through it until you finally can experience it for yourself.

 

MT

[[Ru...]]

Hi MtFan.....Just wanted to say thank you for all of your words of encouragement to me and everyone else.....I keep re-reading your posts and it helps me get through this horrible ordeal...sometimes I feel like Karenpug.....but you hit the nail right on the head....Lack of sleep does cause your mind to think of awful things....  I still am having a diffuicult time sleeping....sometimes cannot fall asleep, or fall asleep then wake up and cannot go back, etc. etc.      I say to myself, " what is going on with me"?  but it is all WITHDRAWAL!!!  I sure miss ThEway....I hope he comes back!  Thank you again for being here for us all.

[[MT...]]

Runnergirl, it's hard to stay sane as you go through this. Your brain is doing all sorts of crazy things and you're just trying to survive. As time passes the crazy decreases. The less you analyze it the less you're feeding the crazy of wd. I'm glad I can occasionally be helpful. I remember how hopeless and desperate I felt earlier in this. And there were times I felt even too strange for BB since my sleep deprivation was far more extreme than the norm. Still, in general people were kind and supportive. We help each other here.

[[Ru...]]

Hi MtFan,,,,Hope all is well....I don't want to sound like a broken record,,,but.....I guess I just need some encouragement....I am feeling hopeless.

 

1.  What causes the "no sleep" and "anxious" feeling.....Is is lack of glutamate?  This is all so foreign to me....don't understand any of this.

2.  Why don't I ever get sleepy....will this come back?

3.  Wake up like clockwork:  1:30 a.m. 2:00 a.m.....cannot go back out....and sleep does not feel like sleep...  still cannot even take a nap.  Feel wired all day but totally exhausted.

 

I am no spring chicken....57 years old.  And this is wearing on me..Sometimes I feel I will always be like this ....

 

Did you or anyone else feel like this and how are you doing now?  On the days I do not sleep....I feel  so horrible...nothing excites me....so sleep deprived.

 

I am always reading past posts to help me stay encouraged....and hopeful.    Will this ever end?

 

Like you...sometimes I feel too strange for BB....I don't even know how to explain myself I am so sleep deprived.

[[MT...]]

Hey Runnergirl.

 

When you're super sleep deprived it's easy to feel absolutely crazy. Our brains and bodies just don't work well without adequate sleep. In response to your questions:

 

1. The no sleep and anxious feeling is mostly caused by a lack of GABA in our body (takes some of us a super long time for our bodies to create adequate amounts again and pop out receptors, etc. to absorb it) and too much glutamate. Think of GABA as the body and mind's brake. It causes relaxation of muscles, nerves, brain, everything. Glutamate is the accelerator. It speeds up respiration, heart rate, and stimulates the brain. We have way too much glutamate because our bodies tried to balance out the excess GABA that was floating around when we took benzos. These two neurotransmitters work together to balance out our state of stimulation, tension and relaxation and for some of us it takes a very long time for the to balance out again. So it's like a smoke alarm is constantly going off. It's hard to relax or sleep when that's happening.

2. You don't get sleepy because of the above. It will come back. I really enjoy it every day now when I get that sleepy feeling but, except when I took amitriptyline, I went close to two years before I felt much more than a tired, maybe I can rest, feeling. And I had to get off the amit completely before it happened on drug free nights:-(

3. Yep, that wired but tired feeling totally sucks. Most of us insomniacs go through that waking up in the middle of the night phase. It gradually gets better. First you'll occasionally be able to fall back asleep after some work. Then you'll fall back asleep more easily. Then at some point you'll sleep through your usual wake up time. There will be waves and windows but that's how the overall trend will work.

 

I'm 55 and also felt like I'd always be like this. Like I was just broken. Nothing in my training or my research ever said anything like this was even remotely possible. It was so hard to believe it would get better and I often didn't. But what's the alternative? So I chose to hope that I would somehow heal and try to live this one day at a time, not focusing too much on the future. Sometimes I would totally despair and want to give up. But when I could, I'd get back up and fight again, force myself to take walks, meditate, eat the best I could and just...survive. Then I noticed it was becoming more than surviving. I still find some things hard (much of it because of CFS) but I'm thankful every day for every moment of sleep and rest and for any ability to function. Losing it all made me very conscious of what a gift these simple things are. Being able to shower myself or make a meal is worth celebrating. Give yourself credit for staying in this extremely difficult fight and slogging through the day in, day out, battle. You're sleep deprived but not stupid or hopeless. Dare to blow on that tiny ember of hope for your future.

 

MT

[[Ru...]]

MtFan,THANK YOU THANK YOU THANK YOU THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

 

Thank you SO MUCH for answering my questions......You and everyone else who has helped me here on BB are angels. It is a shame that no professional can help us ....I will never forgive my Doctor (of 30 years) for keeping me on these for 7 years......I always wanted to be off them, but he always said that they were safe...ha!  My sleep problems began when I was 50 and he put me on these pills....but I am sure it was all menopausal but he poo poo - ed that and said these will help with menopause symptoms....what a joke. 

 

Today,  a good day for me...I feel almost human......but I did take Melatonin last night.....sometimes it helps just to get back to normal for a day.....

 

I have been off Klonopin for 1 year now.... and off Amitriptyline since January....so I still have a long way to go.....

 

THANK YOU AGAIN SO MUCH!!!  Have a nice weekend.

[[MT...]]