Stuck on Klonopin

[mattie]

Severe insomnia since ME onset 2 years ago.

I have been taking Klonopin for sleep now for about 6 months.
0,8 - 1 mg (liquid form called Rivotril) Never increased above 1mg.

It worked well in the first few months. Gave me about 6 hours reasonable sleep. Definitely not enough but a lot better than before.
This got less and less. For the last couple of months it's been more like 3-4 hours of sleep.
Also getting interdose withdrawal symptoms during the day.
This ongoing lack of sleep has made me so much worse.
Currently completely bedbound and after another bad night I barely have the energy to breathe.

I do not want to increase my dosage as I know all too well about the risks, especially if you keep upping the dose. But tapering down is not really an option either because if my sleep will get any worse I am afraid I will not survive for much longer.

Tried all the other stuff. None of it helped.
Other shorter acting benzo's are even worse than Klonopin. I got tolerance on them in just 2 weeks.
same for Ambien (Zolpidem). That stuff also gave me horrible interdose withdrawal.

Had a sleep study done: result: almost no deep sleep.
They put me on Amytriptyline. Did not work. Horrible side effects.
Later tried Trazodone: Did not work either. Again horrible side effects.

Melatonin: No results
Natural stuff does nothing: eg: Valerian, L-Theanine, Gaba, 5HTP, etc. Tried all the supplements ever suggested for sleep on this forum.

Cannabis: cannot tolerate it. Does not help.

Diet: tried them all. I eat like a monk. And no: Bone-broth is not an option.

Sleep hygiene: Been there, done that.
Meditation / MBSR / Relaxation: check.

Sleep or no sleep for me is the difference between being totally bedridden and having a tiny little bit of a life.

I slept like a baby for 43 years. Now virtually every night is pure torture. (daytime too)
This disease is living hell.
I have severe ME and POTS and my health is declining so rapidly it is frightening.

My GP can't help. And the last ME "specialist" I saw did not live up to the Primum non nocere oath.

So running out of options here...
Must sleep.

 

[notmyself]

for how long did you try the natural stuff?

 

[Learner1]

Did you try Kavinace?

 

[gabriella17]

Hi Mattie, a couple of suggestions:

First, someone I've talked to who had a lot of trouble with benzo withdrawal recommended this free e-book written by a doctor. She said this the best source of information for benzos. Benzo withdrawal can also result in insomnia.

I'm not sure if this is something you've checked out, but have you gotten labs done lately? Last week, I got lab results in and my naturopathic doctor went over them with me. She said I had nearly no estrogen & progesterone, that my testosterone was low, and so was my cortisol. She said my adrenals were nearly burnt out.

My regular PCP went over these same results a few days later, but (predictably) said all my levels are "normal".

My NMD provided me with meds for it. She said that the hormone issues often cause insomnia.

Another thing - perhaps you can try listening to binaural beats as you're trying to get to sleep. There are ones that are supposed to induce deep sleep. Also, my doctor recommended a free mindfulness based stress reduction course, which ordinarily costs hundreds of dollars if you take the course in person. The research behind it is convincing. Appropriate for those who are bed-bound. Best meditation course I've ever found, and has significant effects on physiology, including MS, diabetes, etc! Here's the link: MBSR

 

[TenuousGrip]

I see that you're aware of the risks of long-term benzo use but I think it's useful to raise the issue again for anybody else that sees this thread:

https://en.wikipedia.org/wiki/Effects_of_long-term_benzodiazepine_use

I have a PWME friend who's basically severe and cannot/will not stop taking benzos. But her prescribing physician (ME/CFS specialist) agreed with my suggestion that they may be causing her more harm than help these days.

I think that's particularly true in people who have a Cytochrome P450 defect that make them poor metabolizers of the drug. In that case the effects can be dramatically worse.

I'm not suggesting that the benzos are causing you harm but I always think it's important to think about it. Like most drugs ... benzos can do incredible good and incredible harm :-(

I wish you deep, restorative sleep.

 

[mattie]

Thanks for the suggestions!

for how long did you try the natural stuff?

months.

Did you try Kavinace?

No I did not. Tried Taurine and B6. Maybe the Phenibut component in Kavinace is worth a try...

Hi Mattie, a couple of suggestions:

First, someone I've talked to who had a lot of trouble with benzo withdrawal recommended this free e-book written by a doctor. She said this the best source of information for benzos. Benzo withdrawal can also result in insomnia.

I'm not sure if this is something you've checked out, but have you gotten labs done lately? Last week, I got lab results in and my naturopathic doctor went over them with me. She said I had nearly no estrogen & progesterone, that my testosterone was low, and so was my cortisol. She said my adrenals were nearly burnt out.

My regular PCP went over these same results a few days later, but (predictably) said all my levels are "normal".

My NMD provided me with meds for it. She said that the hormone issues often cause insomnia.

Another thing - perhaps you can try listening to binaural beats as you're trying to get to sleep. There are ones that are supposed to induce deep sleep. Also, my doctor recommended a free mindfulness based stress reduction course, which ordinarily costs hundreds of dollars if you take the course in person. The research behind it is convincing. Appropriate for those who are bed-bound. Best meditation course I've ever found, and has significant effects on physiology, including MS, diabetes, etc! Here's the link: MBSR

Thanks for the suggestions. I am familiar with the Ashton manual. I know how to taper. I just think my condition won't allow me to do that right now. Mindfulness / relaxation / meditation: I practice it every day. A lot. Does not help with sleep. Neither do the binaurals. Relaxation is definitely not the issue for me. It is the illness that messes up my sleep.

 

[mattie]

I see that you're aware of the risks of long-term benzo use but I think it's useful to raise the issue again for anybody else that sees this thread:

https://en.wikipedia.org/wiki/Effects_of_long-term_benzodiazepine_use

I have a PWME friend who's basically severe and cannot/will not stop taking benzos. But her prescribing physician (ME/CFS specialist) agreed with my suggestion that they may be causing her more harm than help these days.

I think that's particularly true in people who have a Cytochrome P450 defect that make them poor metabolizers of the drug. In that case the effects can be dramatically worse.

I'm not suggesting that the benzos are causing you harm but I always think it's important to think about it. Like most drugs ... benzos can do incredible good and incredible harm :-(

I wish you deep, restorative sleep.

Thanks!
I am sure the benzos are causing me harm. And they are no long term solution. Although some have luck with Klonopin long term. But lack of sleep is causing a lot of harm too.

 

[TreePerson]

@mattie I have used temazepam to varying degrees for years. I've increased it when I felt desperate and then decreased it when I felt I had the strength to do that. Cutting down the dose weaning myself off and so on. This way I've managed to keep going and to get some sleep.

Lately it's got harder to do that because my ME has deteriorated. However it remains my view that there are times when the most important thing is to sleep. In fact if I didn't get that sleep I would deteriorate to the point that would need care. So in a very bad patch on a very bad night I will take it twice. This way I might manage 10 hours. Usually this helps enough that I don't need to do the same the next night.

I also find that almost nothing else helps.

 

[Kenshin]

It is extra hard to go through any withdrawels when ill, we can't afford to feel any worse!
It sucks when a medication helps, but before long it becomes less effective and we are faced with stopping the drug and feeling even worse.

 

[mattie]

@mattie I have used temazepam to varying degrees for years. I've increased it when I felt desperate and then decreased it when I felt I had the strength to do that. Cutting down the dose weaning myself off and so on. This way I've managed to keep going and to get some sleep.

Lately it's got harder to do that because my ME has deteriorated. However it remains my view that there are times when the most important thing is to sleep. In fact if I didn't get that sleep I would deteriorate to the point that would need care. So in a very bad patch on a very bad night I will take it twice. This way I might manage 10 hours. Usually this helps enough that I don't need to do the same the next night.

I also find that almost nothing else helps.

Thanks. Story sounds similar. Cutting down used to be doable for me too, but right now I am afraid I cannot handle feeling worse than this. And even if I succeed: In the last 2 years sleep without meds has been at least as bad.

Dilemmas...

 

[TreePerson]

Thanks. Story sounds similar. Cutting down used to be doable for me too, but right now I am afraid I cannot handle feeling worse than this.

I know. I think my thinking was take extra for a few days and don't think of cutting down until you have improved a bit. To me it's the lesser of two evils. But I also understand the fear of building up a habit increasing the tolerance. I have also felt panicky about this lately although right now I'm on top of it again. And I have to stay within certain limits otherwise I won't be able to get them from the doctor. It's a constant juggling act. Sometimes I take them with Co-Codamol or with one natrasleep. That can help.

 

[Learner1]

@mattie Disturbed sleep goes with the territory here. I like Gabrielle's suggestions above. I have a good naturopathic doctor helping me, too...and hormones can be important.

I've found the following to be helpful, along with the type of dosing I've been on, which is a lot, but gives you an idea to see if you may not have taken enough.

Melatonin (10mg)
Progesterone (200mg)
Pregnenolone (10-150mg)
Phosphatidyl serine (100mg)
Magnesium glycinate (500mg)
Theanine (400mg)
Taurine (1g)
Glycine (5g)
GABA (500mg)
5-HTP (200mg)
P5P (300mg)
Naltrexone (3mg)
Neuroscience Kavinace (1-2)

Note that the Kavinace can be addictive, so best to take as little as you need and try the other stuff first. And it may be a combo that works.

It does help and I realize its cumbersome, but I didn't want to take a drug.

Hope you find some sleep soon...

 

[mattie]

@mattie
I've found the following to be helpful, along with the type of dosing I've been on, which is a lot, but gives you an idea to see if you may not have taken enough.

Melatonin (10mg)
Progesterone (200mg)
Pregnenolone (10-150mg)
Phosphatidyl serine (100mg)
Magnesium glycinate (500mg)
Theanine (400mg)
Taurine (1g)
Glycine (5g)
GABA (500mg)
5-HTP (200mg)
P5P (300mg)
Naltrexone (3mg)
Neuroscience Kavinace (1-2)
Hope you find some sleep soon...

Thanks.
Did or do you take this all together? Every night? Or do you rotate?

I am unable to go out to see a doc or naturopath right now.

 

[HelloHere]

Severe insomnia since ME onset 2 years ago.

I have been taking Klonopin for sleep now for about 6 months.
0,8 - 1 mg (liquid form called Rivotril) Never increased above 1mg.

It worked well in the first few months. Gave me about 6 hours reasonable sleep. Definitely not enough but a lot better than before.
This got less and less. For the last couple of months it's been more like 3-4 hours of sleep.
Also getting interdose withdrawal symptoms during the day.
This ongoing lack of sleep has made me so much worse.
Currently completely bedbound and after another bad night I barely have the energy to breathe.

I do not want to increase my dosage as I know all too well about the risks, especially if you keep upping the dose. But tapering down is not really an option either because if my sleep will get any worse I am afraid I will not survive for much longer.

Tried all the other stuff. None of it helped.
Other shorter acting benzo's are even worse than Klonopin. I got tolerance on them in just 2 weeks.
same for Ambien (Zolpidem). That stuff also gave me horrible interdose withdrawal.

Had a sleep study done: result: almost no deep sleep.
They put me on Amytriptyline. Did not work. Horrible side effects.
Later tried Trazodone: Did not work either. Again horrible side effects.

Melatonin: No results
Natural stuff does nothing: eg: Valerian, L-Theanine, Gaba, 5HTP, etc. Tried all the supplements ever suggested for sleep on this forum.

Cannabis: cannot tolerate it. Does not help.

Diet: tried them all. I eat like a monk. And no: Bone-broth is not an option.

Sleep hygiene: Been there, done that.
Meditation / MBSR / Relaxation: check.

Sleep or no sleep for me is the difference between being totally bedridden and having a tiny little bit of a life.

I slept like a baby for 43 years. Now virtually every night is pure torture. (daytime too)
This disease is living hell.
I have severe ME and POTS and my health is declining so rapidly it is frightening.

My GP can't help. And the last ME "specialist" I saw did not live up to the Primum non nocere oath.

So running out of options here...
Must sleep.

I did get the rivotril In europe but in a country now where clonopin is a pill reminds me of how stupid that drop thing IS....NONETHELESS.......I M SURE it affects it s effects. Oh Mj.....microdose it .and see .mayb e u can have some bliss.... I remember I had same trouble worked well first months ..i believe the liquid does change the molecule and the effect. I m on klonopin 0.5mg once a day more or less but mostly less since a year at least .. it s quite ok. Long term klonopin drops seems (I was not diagnosed with p.o.t.s at that time and had no O.Intolerance. maybe the trouble here is the liquid form. I agree Xanax will not. Good luck it s soon night there...hope u 're doing fine. And will get some sleep..must be very gloomy and cold in the nl. Now.... I m sorry to hear you have p.o.t.s did u get heart ekgs?? The brugada I have is that long QT thing sudden death syndrome stuff. Eat healthy if you can. I would not like to be where u are. Hang on and get to the hospital.(if u have to)

 

[Mary]

@mattie - I've struggled with insomnia for years. I've found there are at least 2 major factors influencing sleep - GABA/ glutamate balance, and cortisol. I don't think any of the supplements you mentioned affect cortisol levels and high cortisol at night can cause crazy insomnia that nothing will touch, until you get it lowered. Have you had an adrenal stress index test which measures cortisol levels throughout the day/evening?

I first had the test done 13 years ago and discovered high nighttime cortisol. I was given Seriphos, which is phosphorylated serine -NOT phosphatidyl serine, they're different things - phosphorylated serine is generally believed to be more effective than phosphatidyl serine in lowering cortisol. I ended up having to take 8 capsules a day (800 mg.) of Seriphos, a very high doses but that's what I needed. And it worked almost immediately, within a day or 2, helping with sleep. After a few months I had to lower my dose as I was getting extra tired - my cortisol was going too low.

For someone just starting to take Seriphos, I would recommend starting with maybe 2 a day and work up if you need more. It's best taken in the morning. When I took it at night, it caused insomnia.

A cheaper alternative and which may be even more effective is arginine, which also lowers cortisol. I recently had some ongoing rather severe stress and my sleep which had been sort of manageable suddenly wasn't at all. Seriphos alone wasn't enough or I didn't take enough, I don't know. I took arginine and ornithine (500 mg. each) last night and got the first good sleep I've had in quite awhile. You do have to watch how you react to arginine because like Seriphos, it can make cortisol go too low. When mine goes too low, I get extra tired, so just be aware of this.

I was on lorazepam in the middle of the night for sleep for 10 years (!) I started at 0.5 mg and went up to 1 mg, and stayed there. I tapered off of it over period of some 10 months starting August 2016, it was very rough sleepwise and I think I'm still recovering from that. GABA issues are related to benzo withdrawal and for GABA, I found that niacin is very helpful, as well as l-theanine. l-theanine on its own didn't do much. You have to get the kind of niacin that makes you flush - I got used to the flushing and finally got to like it because it meant I would sleep better. Some people do better with niacinamide. But don't get time-release or extended release niacin because they have been associated with liver damage.

Inositol was also helpful, as well as glycine.

So I was on a cocktail of supplements very similar to @Learner1, but no Kavinace. I would stay away from the Kavinace - I've read it can very easily have the same tolerance problems as benzos.

So I think it would be good for you to look at possible high cortisol issues. The easiest and cheapest thing to try is arginine, and ornithine can also help with sleep though I don't think it lowers cortisol.

And then as to GABA, here's what I found helpful in getting off of lorazepam. I took it all before bed, and more middle of the night, except for 5-htp, which I only take before bed. None of these by itself was enough to make me sleep, though the niacin especially was very helpful, so I would start with it.

niacin - 500 mg before bed and 300 - 500 mg more middle of the night as needed
l-theanine - before bed and middle of the night
inositol - " "
glycine " "
Vitamin C - helps mop up excess glutamate - I take extra during the day and at night
calcium pyruvate - " "
resveratrol " "
5-htp - 150 mg. before bed

Re dosing - we're all different and so you would have to experiment to find what is best for you. I seem to tolerate a high dose of niacin but many people couldn't take what I do.

eta: forgot: I also take melatonin. I've been taking pregnenelone and progesterone for many years so did not associate them with sleep. I've found taurine to be helpul for a little while and then suddenly it causes insomnia, so I have to stay away from it. And B6 causes insomnia for me when taken at night, though it helps many people sleep. But I do need a lot of B6 (I take it a P-5-P) and so I take it with breakfast and lunch.

 

[Learner1]

Interesting @Mary I had to switch niacinamide from evening to midday and B6 from midday to evening to sleep! We're all different.

Citrulline is a better choice than arginine.

And Seriphos is a great product. Too much can depress daytime cortisol, though.

 

[Mary]

Interesting @Mary I had to switch niacinamide from evening to midday and B6 from midday to evening to sleep! We're all different.

Citrulline is a better choice than arginine.

And Seriphos is a great product. Too much can depress daytime cortisol, though.

Interesting about citrulline - I didn't realize that it gets converted into arginine. I'll have to read more about this. Thanks!

 

[geraldt52]

I am not a doctor, mattie, and the following is just my experience to take or leave as you see fit. You probably won't get this advice from anywhere else, and certainly not from a doctor, but have you tried some judicious use of alcohol? I have had weapons grade insomnia for many years, probably the result of long term use of Klonopin, leading to eventual habituation to Klonopin...exactly the path that you are starting down.

I have tried drugs, supplements, home remedies, and sleep hygiene ad nauseum...and quite literally everything made me worse, not better. I now use nothing but a shot of vodka, once, maybe twice, a night for many years now. I generally go to bed and give my best shot at relaxation to go to sleep, and if I'm not asleep in a few hours then I get up, take a shot of vodka, and immediately get back in bed. This will nearly always get me a couple of hours of sleep, and often it's enough to break the cycle and allow me to sleep most of the rest of the night. If I awake in just an hour or two, I may repeat the shot of vodka. The doctors will tell you alcohol doesn't work, but I can tell you it works for me, and has immensely fewer side effects than all the drugs and supplements.

You will almost definitely have to wean yourself off the Klonopin to get decent results from anything else, as you're almost certainly dependent on it. Be very careful using alcohol in combination with the Klonopin as they potentiate one another and it can be very dangerous to use them together.

I don't recommend any benzo, and I think they are very dangerous to mess around with, but when I have something going on where I simply have to get some sleep I still resort to Ativan in place of the vodka...but I limit myself to one night...and I'll very often pay for that night over the course of the next several nights.

Insomnia is a dreadful disorder all on its own, and I literally feel that the trick with the shot of vodka has saved my life after Klonopin.

 

[Learner1]

Interesting about citrulline - I didn't realize that it gets converted into arginine. I'll have to read more about this. Thanks!

I'm too lazy to look it up at the moment, but arginine can have some unintended consequences so my doctor always uses citrulline with patients.

 

[Stretched]

@Matte,
There’s at least two other threads on PR re Insomnia, one recent and the other a few years back - lots of specifics. I hope you
will search them out. I, too researched the hell out it, ‘still do and it helps! I’ve read numerous books on the subject.

I’ve had insomnia for at least 30 years, waxing and waning; intractable, kicked off by lots of stress... . I’ve had some success in recent years on low dose rxs. (I’ve also used Klonopin that long. I once took 3-5 mg a day, and reduced it to .5 x 2 a day, recently switching to diazepam.5 x 2 daily. No particular problems and I ended up using a combo of 3 pills for sleep.)

I rotate a minimal half dose of a single ‘z’ pill and add a half dose of Doxepin HCL (sinequan) to add hours. PLUS, key, was to add an OTC sleep aid which synergizes the others. I may take this minor cocktail twice a night and consequently, can string together
10 -12 hours of sleep in 2 or 3 sessions. It’s not ideal but it beats not sleeping enough. I keep a log.

It was just a ‘quirk’ - adding that OTC (a Kirkland product but others are likely more available
in NL (or try Amazon.com if you want to try the same formula), but it made the difference. Now, it alone sometimes works.

Also, there’s a forum on insomnia at patients.com. It runs the gamut from tyro to old salts, with some good tips.

BTW, I once read a long treatise by an insomniac who overcame it when s/he learned to not be concerned about sleep and how to enjoy those hours drifting with classical music, along with a small ‘white sound’ device playing ocean sounds. I wish I could share that, which I printed out on yellow paper. I now use the latter, also.

You’ll get there, don’t worry too much... . Ciao.