[ForeverLonelyGirl]

Is this ever going to get better? I have written threads under numerous topics regarding my nightmare benzodiazepine withdrawal and this is a problem that persists. Now I'm 20 months off all psych meds and long term klonopin use. The pattern of insomnia is that I stay awake all day, no naps and awake until around 2 am. Then I fall asleep lots of times on the sofa and nap (not by choice or design) for about 20 minutes, then I get up and go to bed. Then I am stark raving madly awake! This can happen in bed too, I might sleep an hour and then wake up, be awake for 3-4 hours. I am super frustrated with this whole ordeal and wonder if I am ever going to be able to sleep normally.

I do know for sure that this almost 2 year ordeal of sleep deprivation has taken a toll on my body and I have no energy most of the time. It has caused some heart problems and who knows what could be traced to my lack of sleep and REM sleep. I feel like crying right now. I hate being awake in the middle of the night. It's just so exhausting! Right now I am fighting off some virus and need to be sleeping. Ambien used to help me sleep, but I hear it is related to benzos too closely for me to take. It was the only thing that helped me in the past, mostly the klonopin helped me sleep.

I've heard people take various herbs, valerian, magnesium, etc. None of that did a thing for me. Also someone told me that they see an osteopath type person, forgot what she was that prescribed all kinds of funky stuff. I know that I cannot afford that, no insurance would cover it. This same person suggested that I "find my own solution". So a medical doctor prescribed the medicine and then took me off cold turkey with no plan of how to help me get through protracted withdrawals and chronic insomnia. Hmm...can you say malpractice? Now with a different MD and she is totally clueless to how to help me, offers nothing. So how the hell am I supposed to find my own solution to a problem that even the genius doctors do not know how to treat?

[gloamingone]

After over two years of insomnia (up every hour or so all night long), I'm finally getting a sleep study done. It's next week (hooray!). Can you suggest a sleep study to your doctor?

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[Ripose]

I have been going through this myself for about 10 years MDs really are useless at helping. Right now I've had 1.5 hours sleep out of the last 36 hours, even taking 3 different meds that should knock me out has no effect.

The best thing I have found to work for me in the past is to be as physically active during the day for as long as possible and forcing myself to stay awake for 16-18 hours straight. Then I watch about 1/2 hour of TV to unwind and I would be quite sleepy by then. The last time I tried this I got almost 5 hours straight sleep.

There are literally dozens of things to try, I have just given you one way. I hope it might work for you. If you do try it please let us know if worked or not.

I'm sure some more suggestions will pop up here soon.

[hamster-bamster]

Elavil.

You are right - Ambien is related to benzos.

Elavil is not. It is not habit forming, you would not need a dose increase, hopefully, it can be taken long term, its side effects profile is benign.

If you have bipolar, then Elavil can contribute to elevated mood, so for long term use it needs to be counterbalanced by a mood stabilizer. If you do not have bipolar, you do not need a mood stabilizer.

Elavil is a very old medication, which is tried and true and very cheap.

Unfortunately, it is not on the radar of many doctors, precisely because it is so old.

[ForeverLonelyGirl]

Originally Posted by gloamingone

After over two years of insomnia (up every hour or so all night long), I'm finally getting a sleep study done. It's next week (hooray!). Can you suggest a sleep study to your doctor?

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I've been thinking that I should have a sleep study but like someone said, how can they do a sleep study if you cannot sleep? I know that if I went to a sleep lab to do such a study that I would be all wound up and unable to sleep. Unless they gave me something to help which probably would alter the test. I had planned to have it done when I start to be able to sleep a little better. It seems to come in waves.

[ForeverLonelyGirl]

Originally Posted by hamster-bamster

Elavil.

You are right - Ambien is related to benzos.

Elavil is not. It is not habit forming, you would not need a dose increase, hopefully, it can be taken long term, its side effects profile is benign.

If you have bipolar, then Elavil can contribute to elevated mood, so for long term use it needs to be counterbalanced by a mood stabilizer. If you do not have bipolar, you do not need a mood stabilizer.

Elavil is a very old medication, which is tried and true and very cheap.

Unfortunately, it is not on the radar of many doctors, precisely because it is so old.

Yes I am familiar with the tricyclic antidepressants, I took one for a while years ago. I just remember how awful they made me feel, don't know how my brain would react to one now. They have some pretty nasty side effects, I think that is why they fell by the wayside and doctors starting pushing the SSRIs. Thanks

[gloamingone]

Originally Posted by ForeverLonelyGirl

I've been thinking that I should have a sleep study but like someone said, how can they do a sleep study if you cannot sleep? I know that if I went to a sleep lab to do such a study that I would be all wound up and unable to sleep. Unless they gave me something to help which probably would alter the test. I had planned to have it done when I start to be able to sleep a little better. It seems to come in waves.

Lol That was exactly my reason for putting the sleep study off for so long! I can't imagine being able to sleep with all those wires and with someone watching me. It's going to be interesting for sure. But at this point I'm desperate to learn why I sleep so poorly.

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[Rose76]

Like Hamster, I found Elavil to be enormously helpful. I got put on it way, way back when it was still a drug of first choice by docs, especially for persons with combined anxiety and depression. Many, many years later, I am still on it. I owe a lot of the improved quality of my life to this drug. I take 50 mg each night about 4 hours before I want to fall asleep.

Doctors are not crazy about ordering Elavil because it's side effect profile is not real benign. But I've been tried on just about everything else that you can think of, and I do mean everything. Nothing else does me as good. (Benzo's are kind of nice, but they're not a good long term solution, as you have found out.)

An antidepressant with similar sleep inducing properties is Mirtazapine, which doctors are much more comfortable with prescribing. It worked similar to Elavil for me, but gave me very vivid dreams that I didn't like having.

Periodically, studies upon studies keep showing that nothing has ever been invented for depression that is better than Elavil . . . or even as good. SSRIs are currently being considered not as effective as they were thought to be when they were new. I got no benefit whatsoever from SSRIs.

Big Pharma doesn't encourage docs to order Elavil because it is now cheap as dirt, and there is so much more money to be made pushing other products.

With tricyclics, you have to start at a low dose (like 10 mg per day) and titrate up gradually, or you can end up with some awful "paresthesias," which are very uncomfortable feelings like bugs in your legs and need to keep moving around. Introduced gradually, though, this doesn't have to be a problem for most people. They are also very constipating, so I recommend taking a stool softener or Miralax with Elavil. Also, tricyclics dry out your mouth, which can be greatly helped by taking Bethanechol.

I've taken Nortriptyline, another tricyclic, which worked very similar to Elavil. But it's more expensive.

I still don't sleep completely normally, but decent enough to have a normal life, which was impossible before I went on Elavil. This drug dramatically changed my life. I couldn't hold a job, or stay in school, until I went on it. Then I could. That's a lot to say for a drug.

Also, Elavil made me physically stronger. I found that out riding my bicycle. I could go further up a steep hill without having to walk the bike when I was on Elavil, as opposed to not on it. I read it enhances how the muscles use oxygen.

[ForeverLonelyGirl]

Thanks for all that info Rose. I was on Tofranil for about a year or so and I think I tried elavil for a short time for some reason. I will have to decide if I want to go that route since my doctor does not seem to have a very broad scope of knowledge about most things. Plus I know how it made me feel before. If I do decide to try it again, it will be sort of a last ditch effort for me. I do seem to need calming down so it might work.

I am really concerned about some of my thoughts lately that are worse when I am lacking sleep even more than usual. I fear having a psychotic break occasionally, which is a bad, bad feeling. Also when I am around other people I have thoughts that I might just start saying really inappropriate things that would get me ousted really quickly or maybe taken to a hospital. Eewwh! Not going to do that. I guess it is an issue with social phobia. I have thoughts that I won't even write here! Not to sound like a broken record but klonopin surely seems to have completely taken my whole life away. Everything, my friends, family relationships and not to mention my career. Honestly I am financially f*cked and socially ruined. The continued insomnia with all these crazy thoughts is just added new misery to all that's happened because of what klonopin did to me.

20 months is a long time to try to hang on to your sanity when you feel so much anxiety and terror at times. It is unbelievably difficult. One thing about going back on a tricyclic is that from what I understand my brain is really damaged from all the years on a benzo, I wonder if there is not also damage from all the antidepressants I have taken over the years?

[Rose76]

There is no surer route to psychosis in a non-psychotic person than sleep deprivation.

Before Elavil, I was used to going long intervals without sleep followed by long sleeping marathons. That completely disrupts having any productive schedule, but it never rendered me truly sleep-deprived. It's just a crazy scedule, or lack thereof, to be on.

Then, in the Spring of 2013, I did experience actual true sleep deprivation. (Combination of age related sleep change and situational stress.) Based on that experience, you have my complete sympathy. I would compare it to being thirsty and not able to access liquids to drink. You do truly get desperate. It's just awful.

I also witnessed an elderly woman, who was abruptly taken off Seconal, go through a week of withdrawal characterized by no sleeping. This was in a nursing home where I worked. The lady, who was perfectly normal prior to them discontinuing her barbiturate sleeping pill, became a basket case - obviously having a psychotic experience . . . reaching out for imaginary objects in the air, like she was trying to push through cobwebs.

I figured they (facility and doctor) knew what they were doing. Well . . . they didn't. After about 7 days, she died. What a thing to witness! I'm still shocked, thinking about it. The doctor supervising this was a General Practitioner.

If the doctor treating your insomnia is a generalist, then I would encourage you to try to hook up with a psychiatrist, even just for a consult or two. My own primary care practitioner is very smart and even teaches at a medical college. Still, I am amazed at how little he knows about psych meds.

Elavil in large doses, like 100 mg and up, can be very tough on the system, producing heart palpitations and other effects. Careful dose selection, with low dose introduction and gradual tapering up, can make all the difference in how you experience using this drug.

I do think you can realistically afford to be more hopeful. If people can recover from heroin addiction, then I think long term Klonopin use can be recovered from. It's just a benzo, not a barbiturate or an opiate. One of the most brain damaging substances a person can use is alcohol, yet many people have recovered from long term, heavy alcohol use with brains that still work. Don't catastrophize your situation with unwarranted assumptions, based on an alarmist article you may have read.

When I came off of Restoril (a benzo,) my psychiatrist was much more concerned with doing that gradually than my G.P. doctor was, and that caution worked out well for me. So I would urge you to get proper psychiatric care. Until you get stabilized, I would not advise you to go getting involved with osteopaths, or herbalists, etc. You sound like you are in need of serious competent psych care.

You also need some kind of daily routine that keeps you appropriately active in the daytime to help reset your inner clock. If you could get into a Partial Hospitalization Program, it might benefit you greatly. One I was in for a few months helped me a whole lot. It just doesn't sound like you are getting appropriate treatment. I hope you find it.

[hamster-bamster]

Originally Posted by ForeverLonelyGirl

Yes I am familiar with the tricyclic antidepressants, I took one for a while years ago. I just remember how awful they made me feel, don't know how my brain would react to one now. They have some pretty nasty side effects, I think that is why they fell by the wayside and doctors starting pushing the SSRIs. Thanks

Trazodone is another old AD which is used for sleep. Unfortunately, it stopped working for me, but when it did work, I had no side effects.

Elavil is actually used a lot these days as a pain medicine, to prevent and alleviate pain. For that, its dosage is << than the AD dosage. Likewise, the sleep medicine dosage of Elavil (10-50 mg max) is much lower than the AD dosage (150-300 mg if not more). I am saying that just to make sure that you are not basing your judgment of this medicine on your experience with a high dosage. At high doses (my late mother took Elavil for depression) - yes, absolutely, it can cause weight gain, dry mouth, slurred speech, you name it. But - there is a difference between taking 10 mg and 300 mg, and that difference just might be like night and day.

I had dry mouth for a couple of days when I was getting used to Elavil, and then for a day I had increased appetite. Then my body adjusted and I do not have side effects. I take as much as 50 mg because it helps prevent migraines - well, not prevent completely, but decrease the frequency.

For sleep alone, 10 or 25 mg was sufficient for me.

[hamster-bamster]

FLG - I looked up medicinal marijuana laws for your state and no, you cannot have marijuana prescribed for insomnia - only seizure disorders are a justifiable cause for a medicinal marijuana prescription in your state.

I use marijuana together with Elavil and it helps a lot. I probably could be on it without Elavil, but, I would then use more marijuana, for one, and lose the headache prevention benefit of Elavil, for another... so I do not experiment.

But you should know for the future (if S Carolina legalizes a larger scope of medicinal use or if you move to another state) that it is a viable option and that you can use cannabis in a completely "sanitized" way, without any of the attributes of marijuana culture. I simply get dark chocolate (I buy cannabis in tins - a tin contains about a dozen and a half of coffee bean-shaped dark chocolates that do not taste like cannabis and do not smell like cannabis but taste and smell like regular chocolate). I have never smoked, either pot or tobacco, nor have been a part of any subcultures (I sense that you are not, either), but I do derive a tremendous benefit from marijuana's sleep-inducing properties.

[ontheborderline]

I honestly found yoga before I go to bed very helpful. I have severe insomnia and I know exactly what you are going through. Google some yoga poses for bedtime and do it for an hour. I think it will help you!

[Wish I was a cat]

Boy do I feel your pain. I have suffered with insomnia for 14 years! Now it is the most extreme. I'm on my 3rd night with no sleep at all! Everything the doc tries haven't worked. Either it does nothing or gives me restless legs. The last thing they wanted me to try is doxepin but after reading the reviews, i refused to even try it. Such horrid side effects. Ambien works for me if I don't take it every night. Alas because of my past alcohol use, and a suicide attempt, my doc won't prescribe it to me. I don't know if anyone has heard of the alpha stim machine. They hook electrodes on the ears and you wear it for 20 mins.supposed to help with depression, PTSD, and insomnia. It is painless. I am a vet so I can get one for free thank goodness because it costs 800 bucks! I have used it in the office and I could tell the difference. I just need to convince them to order one for me. In the meantime, I'm pretty much screwed! As far as the suicide attempt, i used the very meds that are still being prescibed to me so i don't why they can't give me a short term supply of ambien! So frustrating, and of course no sleep = increased depression and anxiety. I've been so good at staying away from the alcohol, but ready to drink again just so I can pass out and get some kind of sleep.

[Restin]

Noludar is another old medicine that helped me in the past with insomnia.

[ForeverLonelyGirl]

Originally Posted by Restin

Noludar is another old medicine that helped me in the past with insomnia.

I looked that med up and wow, what a load of side effects. Also read that it was taken off the market in the US in 1989. Do you still take it?

[reader1587]

Originally Posted by Wish I was a cat

Boy do I feel your pain. I have suffered with insomnia for 14 years! Now it is the most extreme. I'm on my 3rd night with no sleep at all! Everything the doc tries haven't worked. Either it does nothing or gives me restless legs. The last thing they wanted me to try is doxepin but after reading the reviews, i refused to even try it. Such horrid side effects. Ambien works for me if I don't take it every night. Alas because of my past alcohol use, and a suicide attempt, my doc won't prescribe it to me. I don't know if anyone has heard of the alpha stim machine. They hook electrodes on the ears and you wear it for 20 mins.supposed to help with depression, PTSD, and insomnia. It is painless. I am a vet so I can get one for free thank goodness because it costs 800 bucks! I have used it in the office and I could tell the difference. I just need to convince them to order one for me. In the meantime, I'm pretty much screwed! As far as the suicide attempt, i used the very meds that are still being prescibed to me so i don't why they can't give me a short term supply of ambien! So frustrating, and of course no sleep = increased depression and anxiety. I've been so good at staying away from the alcohol, but ready to drink again just so I can pass out and get some kind of sleep.

Almost any medication *can* have bad side effects, if someone during trials reports it...it doesn't mean you'll get it.

[kaiouti]

OP I know that feeling. Where you are soo tired and your mind isn't agreeing with you to lie down and try to sleep, for me at least, when Im awake with insomnia I wait till I feel that exhaustion to the point of just dropping to sleep, but its true I normally do stupid **** that doesn't help, like smoking, eating and computers etc;