Does sleep eventually feel like sleep?

[[Li...]]

I am over two months off, and my sleep is better. It's still kind of strange, but I sleep more and better than during the taper. I've gone from 2 to 4 hours of sleep per night (and sometimes none) to usually 5 to 7 hours. I do get up during the night. It was every hour and a half. I go sometimes three hours without waking up now.

 

As far as appearance, I had looked like I'd been very sick - pale, drawn, wrinkled. With more sleep, I have a little more color now and look more relaxed. The wrinkles which I thought were permanent are smoothing out. I still have some wrinkles but not as many as before.

 

Just wanted to make those notes. This is such a hard journey. Just know that there are rewards along the way. They've been slow coming for me, but they do come.

[[Pt...]]

its scary to read that people are suffering years and years after. what kind of inhuman torture is this?

[[al...]]

its scary to read that people are suffering years and years after. what kind of inhuman torture is this?

 

The process of healing may take years (as in my case), but after a while you stop thinking about it as torture. It does get easier to handle as progress is made and you learn to better adapt. I would never say that my experience has been years of hell. The first several months were another story, however.

[[Pt...]]

It just sucks to wake up exhausted, muscles never fully relaxed, don't feel replenished. My entire body aches from this kind of broken light sleep.

[[MT...]]

Yeah, it's tough but doable. An image I carried in my mind when I was in that first year or so was from a news story. There was a 5 y/o kid who was diagnosed with cancer and was facing 1-2 years straight of chemo for his treatment. This little kid was going through hell for a chance to survive. At the time I was having daily nausea, diarrhea, very little sleep, fatigue and significant cognitive issues (among many other symptoms). I'd tell myself if that little kid could keep facing it, I could face it. One freaking day or hour at a time. I crawled my way to a better time. There was a quote from a book that nailed it: "We don't live to endure. We live so that one day we may live" truly live a life that feels worth living. My life is still difficult because of Chronic Fatigue Syndrome, but the wd part ever so gradually improved until I have far more life now than I could have imagined.

 

Deep within you is the courage you need to get through this. You may not have the emotion of courage but rather just the awareness of a choice...a choice to face this to the best of your ability, stay in the fight, and take good care of yourself while showing kindness to others as you are able.

[[Pt...]]

MTfan, youre right. i need to keep fighting and enduring. i just wish i had a functional brain. people who have mental symptoms wish they had physical symptoms instead. and people who have physical symptoms wish they had mental sympoms instead lol. i have been in a state of mental torture since day 1 not JUST with insomnia but a whole host of other symptoms. did you have CFS before benzos as well? tha'ts amaizng that you were able to heal to such a degree that you can live life again. i just wish my brain would cooperate with me. it really is just doing it's own thing all the time and i have to fight the symptoms. cog fog, rumination, negativity,inability to use my brain to plan or execute out a daily routine. i can't even pick out clothes to wear in the morning. all i can do is brush my teeth and head to the couch to crochet to fight the negative emotions and rumination. how do i have faith it will get better when it has barely changed at all over the past few months.

[[MT...]]

PTSDmiracle,

 

I've had CFS for over 20-30 years so before benzos. I was put on Klonopin because a CFS doctor said it protected the HPA axis from CFS damage. There are a bunch of us that started it for that reason

 

I felt brain damaged for quite a while. I forgot how to operate the remote control for the TV (that I used daily) and got lost in my teeny tiny town. To get by I got very organized. I wrote down what I had to do even if it should have been obvious (call Jane, do one load of laundry, take walk, pick out clothes for the next day, etc.), put reminders on my phone, took notes on conversations with people (because I'd forget everything they told me) and overall had to lower my standards and expectations considerably. Still, getting even a few things done in a day was helpful.

 

If you've ever read my posts, I harp on this a lot. Gratitude (the practice, not the emotion) is a huge help for coping with negative emotions and rumination. You can do it in a religious manner or not. In Positive psychology they've done a bunch of research on this exercise where you write down 3 good things that happened each day and why they happened. It shifts mood and anxiety: https://sites.google.com/site/psychospiritualtools/Home/psychological-practices/three-good-things

 

I felt bitter, angry, in a constant state of terror and deeply, deeply depressed. This practice helped increase my awareness (because it forced me to look) of the itsy bitsy good things that were all around me and even some bigger things. I learned to say thank you for every bit of rest and even minutes of sleep. Rather than focusing on how little I got, I shifted my focus to noticing what I was able to manage. If it was lying in bed and meditating or reading all night, I gave thanks for that period of rest and having a good book.

 

I saw almost no progress (other than some return of appetite) for over 6 months. I was a very slow recoverer. Over and over again I'd remind myself to trust the thousands who have walked before me and come out the other side. Reading Baylissa Frederick's stuff, and other books on benzo wd, helped provide me with some context and a sort of peer group in addition to BB. You may not *feel* that faith or hope in recovery, but you can *choose* to keep walking towards it. One day you'll see those baby steps happening and one day you'll cross over that line and be ready to post a success story.

 

MT

[[Pt...]]

thank u mtfan.

i have been trying to practice gratitutde, but ultimately the negative feelings and the inability to BELIEVE what i SHOULD be grateful for wins. i will try to think about my situation in a positive way how i'm fortunate to have my parents take care of me, etc. but then i will think about ALL of my friends who are living their life and moving forward.

 

the other thing is i will read this forum and come across people who are around my timeframe. i can't find a single person who is as disabled as me in my timeframe who eventually got better. my brain will not let me do a single thing necessary for survival, that includes all activities of daily living - showering, cooking, picking out my own clothes, driving, walking, being by myself, etc.

i even look at success stories, like everyday, and majority of them say "well by 6 months i was starting to do more", or "i was able to hold down a job", or i look back at their old posts and by 2 months out they are feeling better. it's been 7 months of nonstop mental torture. it feels like i actually died 8 months ago and woke up in hell.

and what about the people on the protracted board who are years and years down the road who are still voicing their symptoms wich disable them?

 

i know being positive to a certain degree is necessary for survival now. but i just cannot believe that such a severe case like mine will be able to heal to a functional degree.

 

 

[[Pt...]]

sorry i am being such a downer and whiner. its just reall hard to see the light at the end of the tunnel when i cannot feel or see any improvements. really, at this RATE of healing, i will heal by the time i 80 years old..

[[al...]]

Sounds like you are assuming that healing is a linear function, but in reality it seems to take place in fits and starts. Perhaps your healing right now is more like two tectonic plates grinding against each other into a standstill. Slippage could occur at any time and instead of an earthquake you might experience improvement. I hope so.

[[Pt...]]

pardon my benzo brain, but i dont' quite understand the analogy aloha

[[al...]]

pardon my benzo brain, but i dont' quite understand the analogy aloha

 

I'm sorry. I was trying to say that healing does not happen at a slow and steady rate. Things may seem stuck for a long period of time and then suddenly progress will jump forward a bit. I usually prefer to use the analogy of the stock market during decent economic times. There may be a lot of scary dips along the way, but the general trend is upward. In cases like yours where progress is stalled (or does not seem to have even started), perhaps the fault line analogy is better. Just replace the resulting earthquake with noticeable healing.

[[Pt...]]

ohh i gotcha. maybe youre right. i am not doing myself benefit by being negarive and hopeless. i will continue to wait to seeimprovemt or the welcomed earthquake. how r u these days？

[[Ba...]]

Well I have not drunk (never did much) anad horribly disabled.  Sleep always my prob.  Just got like 3 hrs and in bed, non functional and getting a cold now.

 

I can't keep this up.

 

Guess it is a question what is the least worse:  adding in gabpentin or lyrica (lyrica works better on occaions have tried it), Or upping a benzo or seeing if a new one might ork better.

 

I m so lo but am told I can't just stop and willnever get off this way.

 

Yes, mirtazapine totally did me in--  no issues until that.  but 3 years later here I am still...  and that is how long off mirtaz so I don't thinkthis will improve.    And cannot live like this no help. assistance, family, anything.

[[Pt...]]

barbara,

sry you are struggling too. i guess the first step for you would be to slowly wean off the benzo. then your brain can start to heal. can you do a liquid titration to get off even slower？

[[al...]]

Well I have not drunk (never did much) anad horribly disabled.  Sleep always my prob.  Just got like 3 hrs and in bed, non functional and getting a cold now.

 

I can't keep this up.

 

Guess it is a question what is the least worse:  adding in gabpentin or lyrica (lyrica works better on occaions have tried it), Or upping a benzo or seeing if a new one might ork better.

 

I m so lo but am told I can't just stop and willnever get off this way.

 

Yes, mirtazapine totally did me in--  no issues until that.  but 3 years later here I am still...  and that is how long off mirtaz so I don't thinkthis will improve.    And cannot live like this no help. assistance, family, anything.

 

Although I did take some benzos on and off, it was Ambien that really did me in big time. I see that you are still taking Ambien so you might want to try to speed up getting off of that drug. Not sure what you mean by 9 Ambien. 9 mg. or 9 pills? Either way that is too much. FDA states that the max dose for a female should only be 5 mg. Continued use of the drug once tolerance and withdrawal begins to set in, can make things worse and worse (personal experience).

[[Ba...]]

yes i trying get off the crumb of klon then can do liquid valium but everythingis too much right now.     

most say the 8 or 9 mg ambien should be last.

 

thx for reply ...

[[Me...]]

I had a 4 night run where I didn't wake up with bone crushing muscle and joint pain before my last drop but then it's time to drop again. After 7 days, I'm slowly starting to get a bit more rest but every time I drop, it's back to pain and waking up constantly. I guess this is me until I am off benzos.

The w/d symptoms are not a sign that I need to take something - they are just the price I pay to get to a lower dose.

I really miss that lovely feeling of drifting off to sleep and slowly coming awake in the morning - it's more like I loose consciousness these days and then am jerked awake with my heart pounding multiple times a night. A good night now isn't even close to what I used to have.

[[He...]]

I want off clonazapam I use for sleep

Any suggestions ?

[[Me...]]

I want off clonazapam I use for sleep

Any suggestions ?

Go to the planning section of this forum. Read the Ashton manual. Make a plan. Start a taper and stick to it. There are no shortcuts. Be prepared, this may not be easy.

 

[[Ac...]]

My sleep is exactly as you describe. Only know I slept some because more time passed than I thought or I recall a dream. If I’m not sleeping in that I accounted for bla I state then I’m dreaming dreaming dreaming but even then the dreams feel more like thoughts than dreams. I can’t rly perceive sleep anymore. It’s been 14 months of it but for a long time I didn’t know alcohol was a no no so I had been drinking, which surprise surprise is the only time I ever felt like I got “real” sleep. Are you quite certain the insomnia is benzo related? I ask only cause sometimes I wonder for myself given that I was only on Ativan for 2 months and I went through a horrific reaction to Zoloft before that which lead me to the Ativan. I saw your screen name has “PTSD” and I’ve wondered if I have some sort of PTSD from the reaction, I’ve also read lots about individuals sleep patterns wirh ptsd and a psychiatrist told me that they sleep in very light sleep states, often not reaching deep sleep. Just makes me wonder

[[Pt...]]

I'm not certain it's all benzo at this point, but the light broken nightmares definitely STARTED after benzos. I have a history of ptsd pre benzos, but even then it wasn't the same type of sleep disturbance as now. I also wonder if my brain "learned" this type of light sleep after being damaged my benzos and now it's some sort of ptsd insomnia.

[[Me...]]

Ptsd,

It doesn't really matter what caused it, it is what you have to deal with from here on out. I've tried to stop looking for a cause for what happens - it happened, I have to deal with the current situation.

Going back on benzos is not an option and I don't trust other drugs to not make it worse so they are not an option either.

 

 

[[Pt...]]

Ptsd,

It doesn't really matter what caused it, it is what you have to deal with from here on out. I've tried to stop looking for a cause for what happens - it happened, I have to deal with the current situation.

Going back on benzos is not an option and I don't trust other drugs to not make it worse so they are not an option either.

 

True

[[Ac...]]

I'm not certain it's all benzo at this point, but the light broken nightmares definitely STARTED after benzos. I have a history of ptsd pre benzos, but even then it wasn't the same type of sleep disturbance as now. I also wonder if my brain "learned" this type of light sleep after being damaged my benzos and now it's some sort of ptsd insomnia.

 

yes I've wondered the same thing. Given its been so long and I'm not having any other symptoms it worries me that my brain just thinks this is normal now and has been conditioned into this state of light sleep. I hope not