• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

geraldt52

Senior Member
Messages
602
Thanks for taking the time, @Mary, but I'm really through with any experimentation. I have had so many bad reactions to so many things, so many combinations of things,that I really have no interest in trying anything else. So many times it has taken forever for me to figure out what was making me feel so dreadful, only to realize it was something I was taking. The only reason I decided to try the Belsomra was the novel mechanism by which it is supposed to work. In the end it worked poorly when it worked at all, and I quickly developed a number of side effects...and, I was quickly seeing the kind of habituation that tends to be characteristic of all the sleep meds.
 

Mary

Moderator Resource
Messages
17,335
Location
Southern California
Hi @geraldt52 - I totally get it about going crazy trying to figure out was doing what to me. I've had a ton of bad reactions to things, though have come across a few valuable things in the process.

If I had never seen a chiropractor who does muscle testing, and had not eventually learned to do it myself, I think I would be much worse off. With the muscle testing, I'm able to check reactions to supplements and doses, most of the time on my own, and sometimes I'll go to the chiropractor to have him check out some supplement or to see if I'm on the right track Without muscle testing, I would be lost. It's one of the main things that keeps me sane, because it gives me a measure of control over what happens to me, being able to figure things out. And again, though I've had more bad reactions than good to various things, I have been able to find some very good things (like niacin) and eliminate what has not been good.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@geraldt52 ...well I took a quarter of the quarter milligram last night which is like .012mg and slept really well. Only woke once to use the bathroom. I did wake a few times but I think I was hot as it has been really warm here. So I am not sure what to think.
I can say that sometimes it takes hours to fall asleep even on the klonopin and sometimes only an hour but I never fall asleep quickly because of the wired/adrenaline feeling. That is the reason why I was thinking it could be placebo effect. Also sometimes I wake at 5 or 6am and sometimes 7am. I usually get up at 7am and ready to get up...I don't feel groggy or hazy at all.

My husband is a pharmacist so he looked up side effects of withdrawal so I will know what to expect when I quit. I am gonna stay on the .012 for a week and then try and stop.
I have had horrible reactions to almost everything I have tried so I am always very leery of trying anything new even if just a supplement...not sure what if anything I will try as I have wasted hundreds of dollars on stuff.
I will keep you posted on how it goes as I have tried this before but in all honesty I really don't think it is helping me sleep since the times I fall asleep every night is different...
Y
 

Daffodil

Senior Member
Messages
5,875
i think its related to hormones being out of whack due to whatever infection we have.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I have no clue...I don't feel like this when I first get up. It takes a couple hours and then I get the spacey...disconnected...feeling drunk. It's is just a horrible feeling and lasts for hours...sometimes till evening.

I used to think it was klonopin or my poor sleep quality but I don't get it everyday...maybe 3-4 times a week which is bad enough. There are days I don't have it at all.
 
Messages
47
Location
Los Angeles
@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.

Exactly the same here. Sleeping has always been an enormous pain in the butt - right back to when I was doing my final exams for university and I would lie in bed and watch the digital clock move from midnight right through to 7am when I would get up. It's worse when I have something important to do, but gone are the days where I don't need a pill. It's every single night. Just to confuse things, I can easily fall asleep at the theater, at lectures, or during a really boring movie at the cinema. in fact I can almost fall asleep on the sofa watching tv, but then as soon as I move to the bed my brain wakes up and I don't sleep at all. I have to sit up, switch the light on, take my sleeping concoction and read until I feel sleepy.

I feel like I keep generalizing as I grasp at anecdotes in the hope of finding patterns, but all the people I know of IRL who have ME/CFS/FMS had sleeping problems before they got sick. And so many people I connect with online say the same thing. Are there people here who didn't? Who have no issues with sleep whatsoever? Anyone?
 
Messages
47
Location
Los Angeles
I have no clue...I don't feel like this when I first get up. It takes a couple hours and then I get the spacey...disconnected...feeling drunk. It's is just a horrible feeling and lasts for hours...sometimes till evening.

I used to think it was klonopin or my poor sleep quality but I don't get it everyday...maybe 3-4 times a week which is bad enough. There are days I don't have it at all.

See this is why I don't think it's the klonopin. Admittedly my issue was with an anti-depressant and not a benzo and it's possible there's a difference, but when I was withdrawing from Pritisq it was every day. At the same time every day. And the symptoms would last until I caved and took a pill or a bite of one. The idea of having 'good days' like we sometimes do with ME/CFS was not within the realms of possibility. I know I'm relying on memory and this was 5 years ago but with hindsight the symptoms felt very different from ME/CFS, which I already had at the time.

The symptoms finally went away after about a year. But I was still ill. So in desperation I went back on it. And nothing changed. So I can say definitively that I am sick, and not going through withdrawal from a pill.
 
Messages
47
Location
Los Angeles
i think its related to hormones being out of whack due to whatever infection we have.

Totally agree about the hormones Daffodil. But how do I work out if I have infections? I've had so many blood tests over the years - every time I see my rheumatologist they take what feels like a whole armful of blood and test for everything under the sun, but nothing has ever been outside the limits of normal. My doctor sometimes jokes that I'm the 'healthiest sick person he knows,' which was kind of funny for a year or two but now, nearly 7 years on I'm just shell-shocked. How the can it be 2016 and so many of us be so sick with something that nobody can fix or even understands?
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Cog71 ....I agree...I have been sick 12 years and basically all my blood tests are normal...oh sure I have had high titers to HHV6 and EBV but they are always past infection. Not one doctor has ever said they have been reactivated. Besides I don't have flu symptoms.
How can we be suffering on a daily basis with "something" that disminishes my quality of life immensely and no doctors I have ever seen have a clue.
I have had low cortisol which Cortef did not help me feel better.

My body feels totally dysfunctional inside and my brain feels whacked out. I am shell shocked too...I seriously could have a normal life if not for the chronic tiredness and poor sleep quality which I have tried to correct to no avail...I also have PEM but it's my own fault as I overdo all the time or else I would really have no life...

I am not sure it's the klonopin either since I have been on it 4 years and these issues I am having started a few months ago and don't have them everyday...
 

geraldt52

Senior Member
Messages
602
...I feel like I keep generalizing as I grasp at anecdotes in the hope of finding patterns, but all the people I know of IRL who have ME/CFS/FMS had sleeping problems before they got sick. And so many people I connect with online say the same thing. Are there people here who didn't?...

My bolding. No, I had absolutely no issues with sleep before ME/CFS... quite the opposite, I always slept like a baby. In fact for the first ten years of being sick I remained reasonably functional by sleeping a lot.

I am certain that Klonopin, taken based on Cheney's nonsense theory of it being "neuroprotective" in CFS, ruined my sleep, probably permanently. I know I would still have ME/CFS had I not gotten involved with the Klonopin, but I wouldn't be anywhere near as bad as I am.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
I used to sleep super great before I became sick....I became ill basically overnight and my sleep was ruined that day. I was on Lunesta for six years straight...then klonopin. My sleep hasn't been the same since November 2004. The illness ruined my sleep for sure...

@Daffodil ...I was treated for Lyme from 2006 to 2009 straight. I am fairly certain we took care of Lyme but I still could be struggling with Bartonella as I frequently get rash on my back.
 

Daffodil

Senior Member
Messages
5,875
I used to sleep super great before I became sick....I became ill basically overnight and my sleep was ruined that day. I was on Lunesta for six years straight...then klonopin. My sleep hasn't been the same since November 2004. The illness ruined my sleep for sure...

@Daffodil ...I was treated for Lyme from 2006 to 2009 straight. I am fairly certain we took care of Lyme but I still could be struggling with Bartonella as I frequently get rash on my back.
you also could have severe leaky gut and bacterial products in your blood causing most of the problems, which is my issue now. you could do some testing such as sCD14
 
Messages
47
Location
Los Angeles
My bolding. No, I had absolutely no issues with sleep before ME/CFS... quite the opposite, I always slept like a baby. In fact for the first ten years of being sick I remained reasonably functional by sleeping a lot.

I am certain that Klonopin, taken based on Cheney's nonsense theory of it being "neuroprotective" in CFS, ruined my sleep, probably permanently. I know I would still have ME/CFS had I not gotten involved with the Klonopin, but I wouldn't be anywhere near as bad as I am.

Oh God - that's awful Gerald. I'm so sorry to hear that. And you didn't even take it for sleep issues in the first place! There's a guy that posts on youtube who was given klonopin for something like 5 days and he thinks he's still messed up by it three years later. Terrifying. It makes me wonder about ambien. I know it's a hypnotic and not a benzo, (at least technically) but my GP absolutely hates it. He says everyone he knows who is on it long term has been changed in some way by it. My husband says 'well just stop taking it then' but I've tried (albeit pathetically) and I just don't sleep at all if I don't take it.
 
Messages
47
Location
Los Angeles
j
@Cog71 ....I agree...I have been sick 12 years and basically all my blood tests are normal...oh sure I have had high titers to HHV6 and EBV but they are always past infection. Not one doctor has ever said they have been reactivated. Besides I don't have flu symptoms.
How can we be suffering on a daily basis with "something" that disminishes my quality of life immensely and no doctors I have ever seen have a clue.
I have had low cortisol which Cortef did not help me feel better.

My body feels totally dysfunctional inside and my brain feels whacked out. I am shell shocked too...I seriously could have a normal life if not for the chronic tiredness and poor sleep quality which I have tried to correct to no avail...I also have PEM but it's my own fault as I overdo all the time or else I would really have no life...

I am not sure it's the klonopin either since I have been on it 4 years and these issues I am having started a few months ago and don't have them everyday...

I'm exactly the same. I have two young kids so I have no choice but to get up to change diapers, fix breakfast etc, but every minute of it is painful and I'm just counting the minutes until I can lie down again. I think the fact that the doctors can't seem to find anything 'wrong' is why I overdo it - because my brain has a hard time accepting I'm actually ill. I'll have a couple of good days (although these are increasingly rare) and I'll think 'There you go! I'm back to normal!' and I'll go do something stupid like attend a yoga class. Boom. Three days in bed with pain like I'd run a marathon.
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Cog71 ...how long have you been taking Ambien? That is what I started with back in 2005 and then was switched to Lunesta. I swear Lunesta is what wrecked my sleep. I took it for six years and could not sleep without it. Even though it put me out I still would wake up feeling horrible.
Believe it or not I feel much better on the little piece of Klonopin I take. I know it's a benzo and all that but it works and for now I will take as little as possible in order to sleep. It's the only thing that works since my body feels wired.

I am going to try and get my thyroid medication changed to include T3 as I don't think levothyroxine is converting. That could be why I feel wired at night.
If that works then I would be able to get off klonopin as its the wired feeling that keeps me awake.
I never have normal days...ever....I am extremely fatigue all day but I push through it best I can or I would have no life at all.

Luckily the only pain I have is nerve pain in my calf and foot...it is tolerable but at times very painful. So I don't deal with pain much luckily. It's the fatigue that is the killer for me.
Have you ever tried anything else for sleep...maybe take half ambien and see if that works?
 

soxfan

Senior Member
Messages
995
Location
North Carolina
@Daffodil ...I have had lots of testing through the years and I mean thousands of dollars worth and they never find anything abnormal.i have had stool...cytokines...blood tests of every kind...ultrasounds...scans...MRI... Endoscopy..I could go on and on.
My first quest is to change my thyroid medication to include a T3 since my levels are on the lowest end of normal. It's something I never thought about until my husband and I were looking over all my tests to see if we could find something. If that doesn't help with the fatigue then we will move on to other options.