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Sleep well...wake up destroyed...different every morning

Discussion in 'Sleep' started by soxfan, Aug 26, 2016.

  1. soxfan

    soxfan Senior Member

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    I have never been able to figure this out. I take the same amount of klonopin every night for the past four years which is 1/2 milligram. I feel as though I sleep pretty well waking some nights once or twice.
    But every single day the fatigue feels different...some mornings I wake up feeling okay but within an hour or two start to feel very fatigued. It's not a sleepy feeling but a total head/mental fatigue. Some mornings I wake up incredible unrefreshed and feel just horrible which lasts all day.

    Anyone have any clue why this changes on a daily basis. It's is never the same two days in a row. I have to say my insides never feel calm and peaceful. I listen to my meditation tapes and they calm me while playing but as soon as it's over I am right back to that wired insides.

    I had a particularly bad day as I slept actually great last night...up at 7 am and by 9 am I was starting to feel very fatigued in my brain/head but not physically in the rest of my body. Then I get upset and frustrated and cry and that make me even more tired.

    Not sure if it's adrenal/cortisol related.
     
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  2. geraldt52

    geraldt52 Senior Member

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    My best guess is that your body/brain wants more Klonopin...and that isn't a good thing. Try taking your usual night dose as soon as you start to feel crappy in the morning, and see if that feeling eases...I'll bet it does. If it does, you have your answer. To me, that would be a serious warning sign about continuing the Klonopin without a plan to get off of it...but then I've been through the horrors of Klonopin withdrawal.
     
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  3. Cog71

    Cog71

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    @soxfan I have the exact same thing. Sometimes I just wake up feeling like crap straight off the bat. But others I feel pretty damn great for about an hour, maybe two, and then it all goes to pieces. Just like you, no two days are exactly the same. One day it's bone-crushing fatigue, the next and achey kind of weariness and apathy.

    I've tried switching up my nighttime sleep medication in case my body was yearning for it and it doesn't appear to make any difference at all. I am by no means pooh-poohing Gerald's idea but apart from ambien, which only has a 2 hr half-life, I've mixed + matched everything I take in case it's a withdrawal issue but can see no pattern. I've also tried switching up the morning - coffee/no coffee, eating/not eating, changing what I eat, trying to go for a walk before I start to slide but I honestly don't think it's connected to anything I'm doing.

    It's like there's some greater magnetic/electrical force which governs my physical state and most of the meds I take are like throwing tiny rocks into the sea and hoping they'll hold back the tide...
     
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  4. soxfan

    soxfan Senior Member

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    @gerald..If I took the night time dose of Klonopin as soon as I feel crappy then I would be basically knocked for a loop the rest of the day. Even though it is a small dose it has a pretty big effect on me. I think you have a good thought but then why doesn't it happen every day. I have some days where I can function quite well till afternoon. It's true I never have refreshing sleep but I haven't in at least 8 years now.

    I would actually love to quit klonopin but have no other sleep meds that work to help me fall asleep. I suppose I could try it on a day I don't plan on doing anything. Could that little dose really affect me that much...I actually put down the wrong dose...I take 1/4 milligram not half.
     
  5. soxfan

    soxfan Senior Member

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    @Cog71 ...it's unbelievably frustrating to deal with this uncertainty every day. I am always canceling plans because of this. I have tried lots of things too...like no coffee..eating protein for breakfast...different meds. Nothing works for me either.

    I still think it has something to do with stress and sleep... My body is just dysfunctional. Maybe like Gerald said my body wants more klonopin...since I have been on the same dose for four years...I dunno anymore.
     
  6. geraldt52

    geraldt52 Senior Member

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    That is a very small dose, and it should be encouraging that you've maintained it as long as you have. I still think that there's a good chance that your brain is wanting the Klonopin, and going rogue when it senses that there isn't enough of it there. The fact that you say that that dose in the morning would knock you out for the day reinforces the idea in my mind that your brain is craving the Klonopin. Benzos are powerful brain-altering chemicals. Maybe try just a tiny piece in the morning and see if there is any effect...it may take a several day trial. If you notice nothing after trying it for several days you can probably dismiss the idea.

    I understand the issue with sleep, and I have to agree that the benzos are the best...but when they blow up on you, and they can do it overnight even after years of use, they can ruin your life for years. When people say that they haven't had a problem with benzos, I always say yet. In spite of what I've been through with Klonopin withdrawal, I still use Ativan maybe four or five times a year, for one day only when I absolutely have to get some sleep.
     
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  7. Cog71

    Cog71

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    I too an convinced it's linked to sleep. in some way. When I first got ill we were in Gold Coast Australia for 4 months while my husband was doing a job. I had an 11 week old baby. I started complaining that the pillows on the bed in the apartment were too hard, that they were hurting my neck. So we changed them. Then I said it was the bed It was too hard and the sheets were scratchy. So I started sleeping on the small bed in the baby's room. No joy. So I tried the sofa. Same. I tried to blame the car we'd rented, saying the head-rests were in the wrong place for my head, which was getting stiff. Also the heat. which was too much for me (this coming from a person who's lived in Los Angeles for 15 years.) and the air-con. Honestly it was like the princess and the pea.

    What should have been a pretty lovely 4 months in a beach town with a new baby turned into a nightmare and I couldn't wait for him to finish the job so I could get back to my own bed and my own house and some decent sleep and stop feeling so utterly exhausted. Except that I never did...

    That baby is about to turn 7. I have another who is about to turn 3. Symptoms have come and gone and waxed and waned. There have been brief periods where I've almost felt better (and periods where I thought I was going to die.) But my life has never ever been the same since that trip. I no longer remember what it's like to wake up and jump out of bed excited about the day to come. It's like a kind of grief. I open my eyes and I remember 'Oh shit, I have this illness'. Just like when someone close to you dies and you wake up and see the sunlight and think 'Why am I sad?' and then it hits you - 'Oh. Yes. That person is dead.' Only it's you that has died. The old you.

    Oh, and just to be clear - by no means do I blame Australia ;)
     
  8. Mary

    Mary Senior Member

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    @soxfan - My chiropractor who does muscle testing has helped me a lot in figuring out what the heck is going on when I get different weird symptoms. Sometimes my adrenals are weak and I need more adrenal glandular. Other times I'm detoxing or herxing, or reacting to a supplement, or my potassium has tanked - low potassium can cause severe fatigue and leaves me feeling horrible, but it's easily fixed once I was able to identify it.

    I now do my own muscle testing but I also see the chiro when I'm stumped or just to confirm what I've found and see what he thinks. It's generally inexpensive, it costs me the cost of an adjustment (although Medicare pays for the visit, so actually I only pay $8 a visit), though the initial visit might be $100. I strongly believe I would be much worse off if I had never tried muscle testing.

    And you might have issues with klonopin as @geraldt52 says. I'm currently tapering off 1 mg. lorazepam (am down to 0.5 mg.) which I've taken in the middle of the night for sleep for over 10 years (Yeah, too long! :confused:) But actually it's not too bad, am using niacin and lots of l-theanine/GABA. Here's a good article on niacin, GABA, vitamin C and benzo withdrawal: http://orthomolecular.org/resources/omns/v10n09.shtml

    Actually the past 10 days or so I have been having some sort of severe problems with sleep but I think it's been due to a new supplement, and possibly licorice, maybe a little to benzo withdrawal but I was doing okay before the new supplement (which I have stopped!)
     
    Last edited: Aug 27, 2016
  9. Cog71

    Cog71

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    I guess what you could do would be to take a teeny tiny bite of one in the morning on a day where you don't have much to do as soon as your symptoms kick in. Klonopin has a pretty long half life (i believe) of up to 50 hours. So when you wake up you should have quite a substantial amount in your system and so it would only take a very small amount to top it up. If you feel relief from that, then you have your answer. If you don't, then you won't be any closer to feeling better - but at least you can rule it out.
     
  10. Cog71

    Cog71

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    Ooops! Just realized I said exactly what you said Gerald only later. Have never understood the mechanism of addiction. I came off Pristiq once and it was hell. Took about a year till the withdrawal symptoms went away. But desperation kicked in and I ended up taking it a second time after my second baby. It didn't seem to work for the pain the second time the way that it had the first, and I pretty much quit cold turkey and felt nothing at all. Had my brain changed?
     
  11. trishrhymes

    trishrhymes Senior Member

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    I can't help wondering whether it has nothing to do with your sleep or sleep medication, since you seem to be sleeping pretty consistently each night. Maybe it is more to do with your ME directly, in other words, is it a measure of how much post-exertional malaise you're suffering, depending more on the stresses and activities over the last few days than your sleep.
    I do not take any sleep medication because I reacted badly to amtriptiline when I tried it and am too scared to try anything else - I tend to react badly to most meds. I think the way I feel each day, and the time it takes for me to reach a state where I need to lie down after getting up (if I make it out of bed) varies in the way you describe, but I think it's down to how much I've done in the last hours and days. Sure, if I sleep badly, which I often do, this contributes, but don't discount everything else.
     
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  12. soxfan

    soxfan Senior Member

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    It definitely could have something to do with previous day's activities. I say that because I have been taking klonopin for 4 years at the same dose which almost makes me think I might not actually need it? I started it after quitting Lunesta which I had been on for 6 straight years.

    Since I am on such a small dose at 1/4 milligram maybe at this point it is a placebo...I am not sure as I have tried to quit but end up taking it after laying awake and unable to fall asleep for hours. I have few nights where I sleep badly. I usually seem to sleep well ...not as well as before illness but I can't complain.

    @Mary thanks for the link.i am still trying to figure out what to do. Nothing in the 12 years I have been ill works to get me to fall asleep as every single night I was wired and tired. First thing I am gonna do is change my thyroid medication to include T3 which I am on the very low end.

    @ Gerald.. I might simply try and stop the klonopin. Unfortunately nothing else helps my body calm down enough to fall asleep.i have tried tons of stuff and always have bad reactions. It's just kinda wierd that I don't get this feeling every day....mystery to me as this whole illness is.

    @Cog71 ...I think it is somehow linked to stress and sleep.just because I think I am sleeping well my brain might not be. We have moved 3 times in the past 2 years and lived with relatives in between so the stress has been unbelievable.we are now settled in our beautiful home so you would think the stress of the past year would be gone...maybe it takes time for,the brain and body to heal...
     
  13. Mary

    Mary Senior Member

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    @soxfan - I just watched this series of videos yesterday - there's 9 or so of them, but each is only 7 or 8 minutes:

    It's Rodger Murphree and he is talking mainly about fibromyalgia, which I don't have - I have ME/CFS. However, he talks a lot about sleep and 5-htp and just has a lot of good information in general. I've been taking 100 mg. 5-htp at night for 13 years and it helps me with sleep but lately I've been having a lot of problems with sleep, anyways he says to take up to 300 mg. 5-htp. Last night I took 200 mg. and an hour later or so could not keep my eyes open and I slept better than I have in a couple of weeks. It was great. He recommends starting with 50 mg. and working up from there. So this might help you. He recommends taking 5-htp about an hour before bed with a little juice (I used V8)

    Also, l-theanine (amino acid helps the brain produce GABA), plain GABA and niacin all help me with sleep. The niacin stimulates the GABA receptors which are calming. Do NOT get time- release niacin, because it has been associated with liver damage. I take the regular niacin which causes flushing (which you get used to). my doctor told me he recommends 500 mg. twice a day with no problem (I take it at night because it made me tired during the day - 500 mg. before bed, and 500 mg. middle of the night with more GABA and l-theanine).
     
  14. soxfan

    soxfan Senior Member

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    @Mary...thanks for all the information. When I go to bed at night my insides (torso) feels wired like there is adrenaline pumping. It starts the moment I lay down. I can be totally exhausted and my body will still feel like that. When I wake in the middle of the night it still feels like this which makes me think I am physically asleep but my body is not at rest.

    I see the doctor in a week and see what she has to say which I am sure won't be much. I have tried supplements with GABA and they just done put me asleep. I was taking Kavinace for a while but that was making me feel tired the entire next day even with one capsule. I am convinced it has something to do with my thyroid and adrenals...but one never knows. I am gonna listen to the videos even though I don't have Fibro either...thanks for all your suggestions.
     
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  15. geraldt52

    geraldt52 Senior Member

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    Oh, soxfan, I hope I am wrong but that sounds so much like the Klonopin that I just can't tell you. I literally didn't even know what anxiety was before my experience with Klonopin, but coming off it I literally didn't think I was going to be able to hang on to sanity. You're lucky in that you are on such a small dose, it should be easier to come off, and it may even be worthwhile to increase your nighttime dose (instead of adding a morning dose) to see if you can silence that "adrenaline pumping" feeling...not that I'm suggesting that long term, but it may help answer your question and help you decide what to do.

    My trouble with the Klonopin began when increasing the dose made me comatose and decreasing the dose made me so anxious that I couldn't even lay down. There was no way to get relief, and it went on for years. That was 15 years ago, and I still occasionally struggle with anxiety. Benzos are horrible drugs when they backfire on you, reportedly every bit as hard to kick as heroin or cocaine...but they work so well when they work that they suck you ever deeper in...
     
  16. Mary

    Mary Senior Member

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    One more thing @soxfan - have you had your cortisol levels tested? High cortisol at night can cause the wired/tired feeling and GABA won't help that. There are things to lower cortisol. I used Seriphos when it used to be phosphorylated serine (they changed the formulation a few months ago and no longer works the way it did). Relora may be able to help with this, I haven't really tried it. But I think it works best taken in the morning - that's how Seriphos used to work for me - taken at night it made things worse strangely but taken in the morning it helped normalize my cortisol and I slept much better.

    Anyways, have you had an adrenal stress index test done - it's a saliva test, it uses 4 samples of saliva taken throughout the day/evening, to show how your cortisol rises and falls. It sounds like it would be very good for you to get this test done. Most doctors just do a blood test which only shows cortisol at the time the blood is drawn so it doesn't give very much information.

    And do listen to Dr. Murphree about 5-htp - it also can help a lot with sleep.

    One last thing - when I added in niacin, the GABA became more effective. It helped a lot.

    Good luck!
     
  17. soxfan

    soxfan Senior Member

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    @Mary ....I have had the saliva test done a couple times...the last being in 2012. It showed levels very low all day especially the 8am but high at 10pm. The doctor tried me on Seriphos but I think it lowered my cortisol to the point I felt like the living dead.

    I have had immense stress the past year so I won't be surprised if the cortisol is screwed up. I just moved to NC so I have to find an alternative Doctor that will do the proper testing...I definitely have the extreme wired feeling at night.

    Thanks for all your help...it is much appreciated.
     
  18. soxfan

    soxfan Senior Member

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    @geraldt52 ...I would love to quit klonopin...trust me. I have been down to quarter of a quarter at one point in thinking I could get off completely. I just don't know what to do about sleep in the meantime I never expected to stay on it this long as I started on it at half milligram way back but that was too much and left me hungover the next day.

    So I settled in at quarter milligram and like I said it might even just be a placebo effect and not really doing anything. I have total unrefreshing sleep every night but have for years. Was trying to quit about a month ago and wrote about it on the forum but the Kavinace made me feel horrible so had to go back to klonopin. I wanna quit it soooo bad. How much were you on? The other thing is that when I try to rest in the afternoon I have the adrenaline a d pounding heart sensation too.

    Seriously my body has no idea how to relax...or it just can't only when I am laying down.
     
  19. geraldt52

    geraldt52 Senior Member

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    I doubt that you're looking at a placebo effect. Some people can just get by with an extremely low dose...take it away entirely though, and no sleep.

    I started on 1mg Klonopin and eventually was on 2mg. Even that is nothing compared to what is prescribed for seizure disorders...I don't know how those people survive on it.

    My sleep is still poor all these years after quitting Klonopin cold turkey (didn't know any better). For a decade I tried every sleep drug, every supplement, every old wives tale, and nothing worked. There were many times I would be awake, I mean ZERO sleep, for 5 days at a time. For the last 5 years, other than a recent test of Belsomra, the only thing I've used is a shot of vodka in the middle of the night. The doctors say it doesn't work, but it works for me...for a couple of hours anyway. My sleep is as good as it has been in close to 20 years. There are nights, though, when I have to do something the next day and have to get some sleep, that I still resort to Ativan, knowing full well that I'll pay for it for a couple of days. I've never found anything that works anywhere near as well as the benzos, but they are just too dangerous for me to even consider taking more than rarely anymore.
     
  20. Mary

    Mary Senior Member

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    @geraldt52 - I thought I had tried everything there was as well, and then I discovered niacin maybe 2 years ago. I'd been taking lots of l-theanine and GABA supps, as well as melatonin and 1 mg. lorazepam in the middle of the night (my worst time) and 5-htp, and when I added the niacin before bed, I fell asleep noticeably more quickly and slept longer. I use the kind that makes you flush. You should not take the time-release kind of niacin because it has been linked to liver damage. I don't mind the flush, it usually means I'll be asleep soon. Niacin stimulates the GABA receptors.

    Recently, I'm not sure why (have a couple of theories but it doesn't really matter right now) I started sleeping very badly again and was getting a bit desperate. I have also cut the lorazepam in half over a couple of months and was doing okay. I tried upping my niacin and GABA supps but it didn't work., And then listened to Rodger Murphree talk about 5-htp and sleep. I've been taking 100 mg. 5-htp before bed for 12 or 13 years. It noticeably helped at first. Anyways, Murphree said it was okay to take up to 300 mg. so last night I took 200 mg. (he says to take it with a little juice to make it more effective). By 9:30 I could not keep my eyes open, slept till 12:30, then took all my supps - GABA, niacin, 0.5 mg. lorazepam, and glycine - glycine helps too - anyways was back to sleep within an hour and slept till 6:30. I haven't slept like that in awhile. I don't know if you've tried 5-htp, or maybe you didn't take enough. I'm going to take 200 mg. again tonight and see what happens.

    re benzos and withdrawal: here's an article about using high dose niacin and GABA and vitamin C for benzo withdrawal. It really might help. If I can keep sleeping like I did last night, I think I'll be able to get off the last 0.5 mg. of lorazepam without too much problem. Since I was already taking a fair amount of niacin and GABA, it may have helped me without realizing it get off the first 0.5 mg. The doses of niacin used in the article are quite high and I don't take anything like that, I've been taking 1000 to 1500 mg. in divided doses (before bed and middle of the night). Niacin makes me tired if I take it during the day.
    http://orthomolecular.org/resources/omns/v10n09.shtml

    One last thing - have you had your cortisol levels checked? My cortisol was very high at night many years ago and nothing would touch my insomnia until I got them down. I used Seriphos, taken in the morning, and it worked like magic. They've changed the formulation and I don't think it works as well now. Relora might help with high cortisol.
     

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