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Can clonazepam (Klonopin) cause depression?

Lucinda

Senior Member
Messages
118
Location
UK
Hi

I know there are lots of threads on here discussing clonazepam (which I understand is called Klonopin outside the UK) but I'm too brain fogged to go through all the endless threads. So I'm hoping someone can help me here.

I have been taking clonazepam since February last year. So 19 months. I started taking it after becoming a patient of Dr Myhill. I told her about my problems with sleep - I had a delayed sleep pattern (usually didn't sleep til 4am - 7am) and sometimes didn't sleep at all - as well as my problems with being wired/agitated/over sensitised to everything, esp noise and the presence of people. She recommended clonazepam to help me sleep and to help calm down 'wired' issues as she had read some of Dr Cheney’s work and his recommendation to put 'wired' patients on this drug.

She recommended I take 2mg at night, with 2mg melatonin. To bring my sleeping pattern forward, she suggested I take them at 9pm every night and make sure I'm in bed at that time ready for sleep.

However, I was scared to go to bed that early. I didn't think I would sleep and I'd heard of ME patients having relapses and stuff if they tried to change their sleeping patterns too quickly. So I decided to go to bed a little earlier each night.

At first I had good results. The clonazepam and melatonin made me sleep a good 8-10 hours, and I slept a little earlier each night. I also noticed my 'wired' symptoms start to reduce.

But then I started to develop a tolerance to them. I still slept 8-10 hrs a night but I didn't feel like I could bring my sleeping pattern forward anymore as I didn't feel much of an effect when I took them.

So Dr Myhill recommended I doubled the dose. I was reluctant and so instead of taking 4mg clonazepam and 2mg melatonin like she suggested, I took 3mg clonzepam and 4mg melatonin. It helped for a little while but then I became tolerant again.

However, I have noticed that my 'wired' issues have continued to reduce (but this could be a result of me generally following her protocol; not just a result of the drug), and I still sleep 8 - 10 hrs. However, I still have a delayed sleep pattern. The drug temporarily bought my sleeping pattern forward a bit, but then it went back to being delayed again when I stopped noticing an immediate effect. Even when I dissolved them under my tongue, like she suggested, to get a more immediate effect from them.

So it's 19 months later and I am still on them. I have talked to Dr Myhill a few times about coming off them but she has said she doesn't want me to come off them until I have fixed my delayed sleeping pattern. But it's been ages and I still haven't fixed it, and I don't see it being fixed anytime soon.

So I've felt mixed about whether I should stay on clonazepam or not. I do think they still may be helping with my 'wired' problems as these problems reduce more and more everyday. And I don't suffer insomnia anymore. In fact, I sleep a lot. I sleep at least 8 hrs a night, and then am usually tired when I get up and quickly go back to bed and usually sleep another 1-3 hours. But at the same time I've read that the longer you are on these pills, the harder it is to come off them, which scares me. And I wonder if they are contributing to my daytime sleepiness and brain fog.

But even more worryingly, I started wondering today if they were actually making me depressed. I have felt more and more unstable emotionally over the last few months. I have become less motivated. I have generally noticed a difference in my mental/emotional state. I have started wondering over previous months if I am suffering depression. But I haven't known why I was depressed. I mean, I have been ill for a long time, my life has been difficult for a long time, but I have not felt quite like this before. Esp the lack of motivation - that's really unlike me.

And I started to consider, that it could be the clonazepam causing it. I researched it a little on the internet and I did read that long term usage of this drug (and any other benzo) could cause depression, as well as other issues I have.

So I guess I just want some opinions. I feel confused. Dr Myhill says it's very important to fix my sleeping pattern, and that I won't be able to do this once I start coming off clonazepam. I have to do it before I come off.

But, I worry that the drug is making me depressed. And that, in a way, may be contributing to why I'm finding it so hard to get myself to bed earlier. I live in a sort of unmotivated fog. I tell myself I should go to bed earlier, but I don't do it. I just don't have it in me. I've had a delayed sleeping pattern for nearly a decade. I just don't feel like I can fix it.

I just don't know what to think. Could they be making me depressed? Would I be better coming off them? Or should I stay on them and find a way of trying harder to fix my sleeping pattern?

And has anyone got any experience/tips on how to come off this drug? I get that you have to do it gradually. But don't really know any specifics.
 

Shell

Senior Member
Messages
477
Location
England
If you want to come off the drug reduce the dose slowly. I can't tell you how but in the olden days when I worked we helped people by reducing doses by 0.5mg every few days. Some people managed fairly quickly and others took a very long time. I would try and make sure Dr Myhill knows you are having mood changes.
Melatonin works best with absolute darkness. Black out curtains and no light in your room might help with the sleep adjustments.
It does take time to reset sleep patterns.
I am sorry you are having such problems. Sleep problems are so difficult (I stopped myself saying they're a nightmare).
 

Nielk

Senior Member
Messages
6,970
Hi Lucinda,

I have had a similar experience with Klonopin but, much more severe since I was on it for 6-7 years.

You can read about my story here http://phoenixrising.me/archives/12200
The article also has helpful links about Klonopin withdrawal.

The short answer to your question is yes, Klonopin could cause depression. Even when one has been on it for a while with no problem it could all of a sudden have a paradoxical effect where one starts to feel very ill and/or depressed. It could also be due to inter-dose dependence where one starts feeling withdrawal symptoms even while one is continuing to take the same dose.

Ideally, withdrawal should be done with a very careful taper under medical care.
 

alice

Senior Member
Messages
109
Location
No. CA, USA
Hi Lucinda,
I take 1 mg of timed release melatonin at dinnertime along with 1/5 of a 0.5 mg Klonopin. This is a very tiny dose of Klonopin, but I think that along with the early melatonin it helps relieve the wired feeling I always had at bedtime.....usually this helps, but not always. I take another 1 mg timed release sublingual spray of melatonin at bedtime. I sometimes also have to take 5 mg. of Ambien.. I still don't sleep 8 hours as I wake up several times during the night and sometimes it is hard to get back to sleep, but it is a lot better than it was.

I have also started Low Dose Naltrexone (LDN) 4.5 mg which I think is helping with better quality of sleep. LDN tends to cause insomnia when you first start taking it, but this goes away after awhile.

Having followed Nielk's thread regarding her Klonopin withdrawal, I have great respect for the problems Klonopin can cause and it's good to keep this in mind. Having had a horrible withdrawal from Cymbalta years ago I'm well aware of how bad these withdrawals can be. Unfortunately oftentimes the doctors are not aware of the snare we get caught in and by then it's too late to just quit.

alice
 

caledonia

Senior Member
Try this - it really helped my delayed sleep problem. My problem was so bad that my bedtime moved later and later until I went all the way around the clock. This went on for many years until I figured this out.

Your body responds to natural light. In the morning the light is blue, which makes your body produce serotonin and wakes you up. In the evening, the light is orange. Your body makes melatonin and it makes you sleepy.

Artificial lighting can really screw this up. I believe that I became much more sensitive to this after I became sick.

To correct this, in the morning, you can either go outside in the natural light for 15 minutes, or use an artificial blue light, like an Apollo Golite, or just use the computer. The computer is a pretty strong source of blue light.

In the evening, you will need to block all blue light or it will cause you to wake up when you desperately need to go to sleep. So at sunset, put on a pair of amber colored "blue blocker" type sunglasses. Use them especially if you're on the computer or watching TV. Or you can just not use the computer or watch TV after sunset.

When you sleep, block out all extraneous light, making sure it's nice and dark. So I have dark curtains in the bedroom, and I also use a sleep mask. I also use ear plugs to cut out any noise that might disturb me.

As far as clonazepam, be sure to taper off very slowly. I've tapered off both that and alprazolam. The alprazolam was horrible, the clonazepam went much easier, so you never know. The problem I had was rebound anxiety caused as the drug left my system. Every time I dropped a dose, I waited until my body was used to it. For both pills, at exactly one week, there was a larger episode of rebound anxiety. If I made it through that, then my body was adapted to the lower dose. Many people will reinstate at that point, and that's why it's so addictive. If you stick it out, then you'll be able to get off eventually.
 

Ocean

Senior Member
Messages
1,178
Location
U.S.
Vitamin D helped some with my delayed sleep problem. Not totally but enough to make things better. But I have to take it in the morning, if I take it in the afternoon or later I have trouble sleeping.
 

zoe.a.m.

Senior Member
Messages
368
Location
Olympic Peninsula, Washington
Lucinda, I think the answer is an absolute "Yes" to your question. It took me almost 8 years to work my way up to 2 mg a day, and that was when I really noticed that, (for some reason) at that dose, it started feeling like it was causing problems as well as helping with many. Truthfully, I noticed some changes after going past the 1 mg dosage, though it's hard to see exactly what's happening at times until enough time has passed to appreciate the pattern. Personally, I think starting at 2 mg is high, but that's not really the issue at hand.

I too suffer from delayed sleep phase syndrome, and clonazepam may have helped with that in the first year or so on a very low dosage and only p.r.n. Mostly, it just made it easier to wind down and fall asleep (I have a lifelong history of insomnia and a delayed sleep phase pattern from infancy), making it less likely that I would be up very late. However, I just am not sure how exactly clonazepam would really tackle delayed sleep phase...? Like Caledonia's post explains, there are such a number of factors that affect it that it would really be a huge deal in the world of sleep medicine if Klonopin+melatonin fixed/changed delayed sleep phase syndromes!

Recently I read a review of a book about sleep that has just come out (sorry, my belongings are mostly packed and I'm not sure where the magazine is...) written by someone with a delayed sleep phase, otherwise-healthy I believe, who has been studying sleep and neurology for some time and feels strongly that delayed sleep phase is probably an evolutionary sleep pattern adjustment, and that even what the world views as insomnia is likely a product of human evolution. It's just as likely that that evolution is the result of artificial lighting and the mass amounts of media we now have as well, I'm not sure if that is his perspective or not? I know how hard this pattern is to live with, but I wonder how much of it really is fixable and about trying to find the middle ground that works best for you.

Having done very slow titrations off of clonazepam in the past to try to get back to 1 mg, I can say that it's a very sticky business. Some do alright with it and, I believe, most have a very hard time. Heather Ashton (if my brain recalls correctly) is the authority on Klonopin and the other 'pams, and her research is impressive. A doctor once told me that Klonopin is a different drug than even how the doctor's prescribing it perceive it to be: it is both a sedative and a stimulant. I'm not sure if he was referring to the tolerance people build that leaves a lot of low-or-medium-level withdrawal when a person has no idea that might be happening, or a rebound-sort-of effect? I think you're wise to notice the changes, and this medicine so widely affects the central nervous system that really anything is a possibility, but certainly you are being affected. When I've forgotten to take it or have been meditating regularly enough to slowly wean off without really any desire/intention to, I've been shocked out how suddenly the world will feel like it's crashing in, and like it's gradually been building and then is catastrophic, then take the medicine before bed, and the symptoms dissipate by about 95% within 1/2 hr. It is powerful, and it's tricky because even if you're not psychologically addicted, your body certainly is.

Hopefully this isn't terribly scary news or anything, I just am grateful for having found it, but would really like the option of leaving it behind, and so far haven't found a way that that is possible. One thing I have heard from two doctors I've worked with is that they've seen patients who titrate down or forget to take it for a few days and they get intense, flu-like symptoms, sick enough to go to the ER but without any flu or infection, and once they are given a few regular doses again, the symptoms totally abate. It has a very long reach and sort of affects every system in your body, so there really isn't much that is off limits. You should follow your intuition about what you're experiencing and see what where it leads you, but, to echo other sentiments here: don't stop taking it suddenly, especially at a dose over 1 mg. Hope this helps.
 

sandgroper

Senior Member
Messages
104
Location
west australia
I started at .5mg maybe 10 years ago. Recently went to 1.5. I had managed to come off it at one point so was sure i had no problem but i still needed sleep meds. This worked best for me so went back on it. Then sleep dr wanted me to reduce to .5. I did that over 2 months down from 1mg. I had already come off a few other things which was a bit silly in hindsight. But I wanted to go down to the .05 and see how i went. SHort story is i got majorly ill but it was hard to know if it was grief and relapse due to travel to hospital. I went up to 1.25 and added mirtazapine. Stopped mirtazapine 4 months ago. It was hard to sleep with only the 1,25 so thats why i am now 1.5. I do notice that i am more noise tolerant with it. and i get to sleep. Have been prescribed some natural supplement to take also but not too sure about it. I did not have SWS on my sleep study. After reading the klonopin post i was worried that i had been at 1mg for so long that i may have been experiencing withdrawals without knowing it. I never wanted to go higher. But i have survived with this drug......and i am not sure what my options would be without it. Its the only thing I have taken everyday for years now.
 

Lucinda

Senior Member
Messages
118
Location
UK
Thanks for the replies.

I don't know if I have delayed sleep phase syndrome. I have never had my sleep problems investigated. I have complained about them a lot, and yet NHS doctors did nothing of any use, so I had to rely on Dr Myhill (my private doctor). She just seems to treat my delayed sleep pattern as just a common part of ME. Didn't explain, just said the clonazepam and doing a 'sleep dream' would fix it. By 'sleep dream' she meant that I should do a self hypnosis, or a visualisation every night when I took the pills to create a conditioned response. However, in the end I switched instead to using lavender oil to create a conditioned response instead as it worked better.

It was only recently I heard of the possibility of having my sleep investigated to see if I had a specific sleep disorder that could be diagnosed. But I can only get this through the NHS and it is going to take a long time. The initial 'discussion' is March next year. Then there will be another waiting list to see a consultant, then another waiting list to have my sleep investigated, so that will take ages. So in the meantime I don't know if I have 'delayed sleep phase syndrome' - all I know is I go to sleep late and wake up late. And have done ever since I developed this illness.

I already know about the darkness thing, Dr Myhill told me. I find it hard staying in darkness all night though when it takes so long for me to sleep! I could try starting the darkness thing earlier though.

I am a concerned, from what people say, that I will go back to being hyper sensitive and agitated again once I come off the pills. I really don't want this.

But then I feel like I'm living in this unmotivated, confused, frequently unhappy, fog. And can't help but wonder if this is a result of the drug. I feel like a zombie most of the time. This also makes it hard for me to make a desicion regarding the drug! I'm so indecisive these days. And I don't know what is caused by the ME and what is caused by the drug.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I like the others think yes you should come off of it if it may be causing you depression. (You need to tell your doctor that). It needs to be come off of SLOWLY.. best to probably follow the recommendations of others who were on it long term and tapered off.

So it's 19 months later and I am still on them. I have talked to Dr Myhill a few times about coming off them but she has said she doesn't want me to come off them until I have fixed my delayed sleeping pattern. But it's been ages and I still haven't fixed it, and I don't see it being fixed anytime soon.

ummm I hate to disagree with someone like Dr Sarah Myhill (who I do admire) but I'd really think that if you've been trying to fix the issue for 19mths if it was going to fix it, it would of well before now.

Delayed Sleep Phase Syndrome (DSPS) also called Delayed Sleep phase disorder (DSPD) ..as far as I know often isnt fixable by drugs (other forms of insomina more often are including wired kind of insomina), from what you said I think you may have DSPS too on top of the wired thing . Not all forms of insomina are the same and they cant all be treated the same. Only 7-10% of insomina cases in the general population are said to be DSPS.

I too suffer from delayed sleep phase syndrome, I too suffer from delayed sleep phase syndrome,

Im another who suffers from delayed sleep phase syndrome. I did have a severe case of it with an original sleep onset time of 6-9am (along with other coexisting ME/CFS sleep issues) but now would say my case is only mild (with melatonin and other sleep aids and having all the other sleep issues also treated). Its not too bad living with mild DSPS as long as one isnt working.

A direct neurochemical relationship between sleep mechanisms and depression is another possibility. DSPD may cause excessive or inappropriate production of melatonin. Serotonin, a mood regulator, is a precursor to melatonin. As a result, increased endogenous melatonin production can deplete serotonin levels and may cause depression.

I just spotted the above quote on wiki about DSPD, so it appears it can cause excess melatonin which may cause depression... so maybe you also need to consider it may be the melatonin which is causing your depression if the wiki quote is correct .... (I dont suggest you try to stop both the melatonin and other drug at the same time as that would be bound to lead to further probably big trouble to your sleep.. maybe try stopping the melatonin just for a week first to make sure its not your melatinon supplelements that are helping give you depression. Its safe to suddenly stop melatonin to rule that out as being the cause)..

Its also been said that those who have DSPD.. 50% suffer from depression and that trying to change the body clock is further likely to lead to depression. Many with DSPD learn to live with it by altering their lives around their own body clocks.

The most important thing is that you got your other insomina issue fixed (the wired stuff) and now can sleep 8hrs per night. I personally dont think Dr Sarah Myhill knows much about DSPD by the sounds of it and that you should see a sleep specialist who Im sure would give you a DSPD/DSPS diagnosis (but be aware its an issue that is extremely hard to fix).

I suggest to check out http://en.wikipedia.org/wiki/Delayed_sleep_phase_disorder if you dont know much about DSPS. I think you will find you fit the diagnostic criteria for it.
 

Lucinda

Senior Member
Messages
118
Location
UK
Thanks. I just read the page on DSPD and it does fit. However, from my understanding it is common for those with ME to have a delayed sleep pattern. Dr Myhill assumes it is a delayed sleep pattern which she thinks can be fixed her way. It's hard for me to tell which I have. It's true that I do not seem to respond to attempts to bring forward my sleep pattern (I tried many attempts before I became Dr M's patient - I tried forcing myself awake earlier with an alarm clock, I tried using a lightbox in the morning which actually made me quite ill due to sensitivity, I tried different pills, I tried giving up naps, etc etc, but nothing worked). But then I wonder if I'm trying hard enough now. I find it hard to stick to a strict schedule at night. I mean to but I'm in such a fog I'm usually unaware of the time/forgetful/just don't feel like I've got it in me to try anymore. Which is what also makes me think I may be depressed. I used to be so motivated. Now I tell myself what I should do but don't do it. I drift through the day, just following habits, finding it too hard to break them.

I could do with seeing a sleep specialist, and I am on a waiting list, but the way things are going it's going to be 6 months at the very least until I see someone. And in the meantime I'm concerned over the clonazepam.

Thanks for mentioning the melatonin though. It had never occured to me that could be causing the depression, but you may be right. I tried melatonin before I was put on clonazepam, and it gave me horrible nightmares and depression when I woke up (that faded as the day went on). I tried to stick at it for a while as it was helping me sleep but in the end the depression got too much. It just kept getting worse.

Funny I hadn't made that connection to my problems now.

When Dr Myhill put me on clonazepam, she said to take melatonin too as it would help bring my sleeping pattern forward. I told her melatonin gave me nightmares, and made me feel depressed for the first few hours of the day, but she said it won't do this if I take it with clonazepam. And it didn't. To my surprise, I took the two together and didn't notice nightmares or depression.

But maybe it's built up over time? Also, I can't remember when I increased my melatonin dose. I got the dosage wrong above. I started on 3mg, then increased to 6mg. I don't know if this coincided with mood problems or not. I don't remember. It took me so long to realease I may be depressed. I've never been depressed before so find it hard to tell the difference between regular low moods and depression. It's taken me a while to realise what I've been experiencing is different from the kind of low moods I had before.

So yes, it could actually be the melatonin. Is it really safe to just come off melatonin straight away when you've been on it for 19 months? I don't know much about it. It's not widely available in the UK. It's an odd one - most doctors don't mention it and you can't get it from shops. You have to get it online, or in my case, off Dr Myhill. It's not a pill I understand really. But I would like to try coming off it to see how I feel if it's safe.
 

Shell

Senior Member
Messages
477
Location
England
Lucinda, one idea might be to phone the local universities to see if any of them have sleep studies going on. You could volunteer as a guinea pig and maybe get to find out what's happening that way.

You may be sensitive to both drugs - that's not unusual with ME. Melatonin effects hormone balance, so what's your throid up to?
 

Lucinda

Senior Member
Messages
118
Location
UK
I'll look into it but am not sure if I'd be well enough if it required much travelling or well, energy. I've heard my mum say my old uni does them, but that's an hours drive away which is too much.

My thyroid? Don't know much about thyroid issues either and how they are relevant! However, I remember Dr Myhill tested my thyroid function when I became her patient (19 months back). I've found the results and it says this:

Lucinda also requested thyroid function tests and the results are as follows:


Free T3 - 4.8 (3.0 to 6.2pmol/L)
Free T4 - 13.3 (12.0 to 22.0pmol/L)
TSH – 1.7 (0.4 to 4.0mlU/L)


In fatigue syndromes it is common to see secondary hypothyroidism, i.e. the TSH result can be pretty much ignored. Lucinda’s free T4 is right towards the bottom end of the population reference range and there is no doubt some people feel much better running high normal free T4s rather than low. However now is not the time to give her a trial of thyroid hormones – my experience is that when the mitochondrial function is very poor, even a trial of low dose thyroid hormones can make the patient ill. So let’s see how far we get with the diet, nutritional supplements, detox regimes and sleep interventions but if we are not making significant progress then a trial of thyroid hormones might be the next thing to consider.

Hope that means something to you! I paid it little attention. And after this letter me and Dr Myhill haven't talked about it. As far as I understand there is no significant issue with my thyroid function.

However tests showed I had mitochondrial failure (which I guess all ME sufferers have?), lead toxicity (which has never been successfully addressed - I reacted badly to everything I was given for this), and various deficiencies (which are being addressed). Previous medical results from the NHS show I have Gilberts Syndrome, and an irregular 24 hr ECG result which Dr M said showed pacemaker issues. However, my heart issues have practically gone following her treatment.
 

Shell

Senior Member
Messages
477
Location
England
Your thyroid looks just within normal. Your TSH is good (loads better than mine lol) I asked because melatonin being hormone, I wondered if it was making any underlying thyroid hormone problems worse making you feel low and groggy.
Mito failure will make you feel yuk, but as you say, that's ME.

The only other thing I can think of is changing the Klonopin to another benzo. They all work similarly, but are a little different and maybe you'd cope better with something else.
I don't know.
I hope you get some answers from Dr Myhill.

it's a shame about the sleep studies - an hour away is awful, even if someone was driving you.
 

zoe.a.m.

Senior Member
Messages
368
Location
Olympic Peninsula, Washington
I don't know if I have delayed sleep phase syndrome. I have never had my sleep problems investigated. I have complained about them a lot, and yet NHS doctors did nothing of any use, so I had to rely on Dr Myhill (my private doctor). She just seems to treat my delayed sleep pattern as just a common part of ME. Didn't explain, just said the clonazepam and doing a 'sleep dream' would fix it. By 'sleep dream' she meant that I should do a self hypnosis, or a visualisation every night when I took the pills to create a conditioned response. However, in the end I switched instead to using lavender oil to create a conditioned response instead as it worked better.

It was only recently I heard of the possibility of having my sleep investigated to see if I had a specific sleep disorder that could be diagnosed. But I can only get this through the NHS and it is going to take a long time. The initial 'discussion' is March next year. Then there will be another waiting list to see a consultant, then another waiting list to have my sleep investigated, so that will take ages. So in the meantime I don't know if I have 'delayed sleep phase syndrome' - all I know is I go to sleep late and wake up late. And have done ever since I developed this illness.
My guess is that DSPS/D is a byproduct of ME, and then there are people who were perhaps healthy before who also tended toward being "night owls." I always used to stay up later than my peers, but it was not until the onset of illness that my 1am bedtime found its way to hours like 5am, 7am, 12pm... Personally, I think it's profound weakness from battling the various infections and the body basically using all of its resources that eventually brings such disordered sleep. Doctors don't really have language, or even a concept to explain this phenomenon, though you see it often with people who are chronically or acutely ill. So, with the limits they have, they suggest the same things that they would basically give to an otherwise-healthy person, even though they generally don't work that way. Sometimes though, some of the things can help ME patients, and anything that helps is fantastic as far as I'm concerned. Also, it seems like the reversed cortisol levels in most (all?) ME patients can cause this inability to fall asleep until much, much later or to stay asleep, etc. And addressing the adrenal aspects of ME is a massive undertaking... I'm not sure how melatonin would figure in, except it's bound to have some small effect on other hormones since it's being introduced to an entire system, but clonazepam rebound/tolerance can increase cortisol, making it less effective at calming and just kind of giving the CNS a lot of information all of the time.

I ordered a book/hypnotism cd a couple of years ago after seeing the author interviewed, he's from the UK I think... anyway, it is called "I Can Make You Sleep" and I recommend it if you are looking for something to help with self-hypnosis. It's based on some NLP stuff as well, and though I've never been a fan of some of that work, I've found this book to be pretty impressive, especially the exercises that use visualization (not on CD). After lots and lots and lots of years practicing meditation and hypnosis and many, many things, the things in this book and CD just worked differently, and better, for me. It's worth a shot.

It does sound like you've given this particular sleep protocol a good try, and I wonder if your doctor can bring down your clon. level so you can at least gauge if there is a difference in your emotions (after some time to get used to the change of course...), maybe by supplementing some diazepam like the Ashton Protocol suggests.

That's impressive that you've been tested for the mitochondrial dysfunction, that's quite hard to get I think. What I've been taught by a specialist in endocrine support is that a TSH is not terribly relevant (unless it's totally out of range), but watching the pattern of your TSH is useful. If you see it rising over time, it's something to pay attention to, even if it's never technically high; it still means your system is having to work harder to get the same result. I was put on a small dose of Armour Thyroid and have benefited from it, even though I tend to just get side effects from any/all meds, but have tolerated it just fine, never noticing anything negative even though I fully expected it. With your cardiac results though, it sounds like you're being treated carefully and judiciously, which is a really good thing.
 

xks201

Senior Member
Messages
740
lol @ 4 mg of clonazepam. You know clonazepam was developed as a primate tranquilizier? If you can't sleep, take 1mg of xanax. At least you won't wake up feeling like you need to sleep for another 2 days due to the ridiculously long half life of clonazepam. .5mg clonazepam will make me hung over for 2 days straight. 4mg would probably put me out of work for week. If clonazepam is needed for anxiety take like .25mg EOD but xanax is king for sleep issues due to its short half life. Wikipedia says it has like a 10 hour half life but in my experience its more like 4.
 
Messages
99
Location
Twin Cities
Short half-life benzos and the Z drugs (ambien, etc) are notorious for being even harder to come off of because of that. Most people taper to a longer half-life one (and valium is the longest) to quit. It's not terribly uncommon for benzo tolerance to climb, but 4mg is a ton! (2mg is even a ton, I don't think it's a starter dose either. .25mg maybe)

I am not rehashing the benzo debate here. They work really well for some people. They are a definite double-edged sword. I am having trouble getting off .5mg of klonopin (down from 1mg a few years ago) and believe it is causing things (tinnitus, burning skin, obsessions) that were not an issue until long term benzo use. They really alter your GABA system and the GABA system is notorious for being slow to rewire itself. But it does heal. Some people would take years to go off that much klonopin and still have trouble, some people would get of relatively painlessly. Duration seems to have just as much effect as dosage, so my advice would be to wean to whatever level you could if you were going to stay on a long time.

Also that much melatonin can start depressing the amount your body is naturally producing, which created a vicious cycle. I think that if your don't feel a ton better (even if you are ostensibly sleeping better) and/or if you keep noticing tolerance, it is wiser to get off the sleep meds and pursue better sleep through healing rather than better healing through sleep. I know it is a vicious circle, I know many people argue that getting regular and deep sleep is one of the most important things with ME, but in my experience, and the experience of many many people I know who have come off of benzos, they end up being more trouble than they are worth when used daily and longterm rather than PRN.

This may sound like an odd question, but have you ever camped for a prolonged period of time away from artificial light? My fatigue diminished by some, not enough, but my delayed sleep disappears after about a week without artificial light. So does about 50% of my difficulty waking in the AM. I don't mean to diminish your symptoms by saying camping will fix them, only that in my case I have found that I am much more sensitive to artificial light than I thought I was. (even when i was blocking blue light - I use a blue light filter on my computer at night, etc.