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Lady Krazy Kat

Can't sleep even on heavy duty sleep meds

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Hi all.  I was wondering if anyone can relate to this and/or had any suggestions.  I am at the very least psychologically dependent on sleep meds, AND at times I fight the effects of my sleep meds due to fear of sleep.

 

I have taken something to sleep nearly every night for the past 12 years  :Trigger: (starting with OTC Benadryl to cope with being woken up in the middle of the night to be abused by my ex-- if I had Benadryl/Tylenol PM in my system, I noticed I fell asleep again right away and it didn't interfere with my functioning the next day.  I was 18 and stupid and didn't really define the situation as "abuse," let alone determine it would be "better" option to leave him rather than take sleep meds every night "just in case."  But hindsight is 20/20 and all.)  :Trigger: 

 

Since then, and especially since my forays into psychiatric meds at age 22, I have required stronger and stronger medications to fall and stay asleep.  Now, it seems I have reached a plateau with my current night med regime, which is typically as follows: 150mg Trazodone and 1mg Klonopin.  If those alone don't work, I have permission from pdoc to take one of my PRN Vistarils (50mg) and THEN 1 Benadryl tablet (25mg diphenhydramine) if that doesn't work.  

 

I have taken all of those meds tonight, am physically/mentally tired, but at the same time "wired" and anxious and unable to sleep.  

 

I know I fight sleep because of at least 4 PTSD-related sleep triggers (being woken up from sleep to be abused, experiencing other traumas in beds, sleep being a vulnerable helpless state which sleeping meds only make worse, occasional trauma nightmares, taking the sleep meds themselves reminding me of why I started taking them in the first place.  

 

I have been on a slew of sleep-inducing drugs, some multiple times, including: Ambien and CR (10mg/12.5mg) alone and with Klonopin/Trazodone, Sonata (unk dose), Lunesta, Rozerem, Klonopin alone (0.5mg to 1mg), Seroquel (20 to 100mg) alone and with Klonopin, Perphenazine, Zyprexa, Risperdal, Prazosin (2mg), and varying doses of Trazodone (50 to 200mg with 150 being most effective).  Herbal stuff has included melatonin, Valerian, and Kava.  I have also done "CBT for insomnia" group therapy and have tried a variety of "relaxing" pre-bed activities (meditation, soothing music, guided imagery, sleep hypnosis CDs, gentle yoga).  

 

The most effective was Ambien and Klonopin (alone and together) in the early stages of my sleep treatment (22 to 25).  But as soon as a former pdoc put me on the "big guns" (mainly Seroquel) b/c he didn't like to prescribe scheduled substances, the "smaller guns" (z-drugs/benzos) haven't worked.  Seroquel was pretty good for awhile too, but after awhile it had a weird effect where it made me super tired but restless/unable to fully fall asleep (like in a half sleep/wake state at night and then groggy as hell the next day.  The other antipsychotics (even ones supposedly sedating) either were activating, gave me akathisia, or both.  Prazosin ironically raised my blood pressure and made me anxious, but I didn't take it very long and other factors in my life then could have contributed to that "side effect."  The CBT stuff is good for coping with the fact that I'm not sleeping but not so much with actually helping me to fall asleep.  And the relaxation stuff freaks me out and makes me more anxious-- I can meditate, do guided imagery, etc during the day, but if I try to associate it with sleep, it makes me more awake.  (Also, the normal sleep hygeine stuff is counter-intuitive for me too-- I fall asleep more easily with the TV on [loud], with the lights on, etc).  

 

Some additional things that are likely making this worse are me trying to abstain from night binge eating (I have literally been eating myself to sleep for the past 3 years or so) and probably also me trying to abstain from DXM abuse (whenever I used it was during the day and didn't effect my sleep one way or the other but I'm sure it plays a role).  But these issues were there before these behaviors and also before trying to stop them.

 

Also, strangely, on the nights the Trazodone does work for me, I feel like its too high of a dose-- it takes a long while to fall asleep and my sleep is a bit restless, but I wake soooo groggy and often press snooze for about 45 minutes, occasionally making me late for work. 

 

So, is it time to try a different medication, or some other kind of treatment approach?  I am totally scared because, more nights than not, Trazodone does work well enough for me, and I feel like its the most sedating option out there considering even the sedating AAPs don't sedate me.  I'm scared to try meds associated with weight gain (like elavil, remeron) due to my ED issues, but if I must, then I must.  

 

Any med (or behavioral) suggestions I could bring to pdoc? Or other suggestions, people that can relate, etc?  Thanks for reading!

 

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I just wanted to say I read your post, and the only idea that came to me is do  you eat when you take your meds?  ie, if I was to take a klonopin pill without food, it had no effect on me, whereas if I ate something with it, it worked like a charm. 

 

Idk about seroquel or trazodone (I've been on them but too long ago to remember a lot about them), but maybe if you ate a little something with them (if you don't already) they'd have more of an effect?

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Hey Melissa, thanks for your reply.  I do eat a snack when I take my night meds, which definitely has a noticeable effect (for when they do work).  Particularly Trazodone is more effective with food-- it even says on the label/insert to take with food for this reason.  With Klonopin, I haven't noticed a difference one way or the other.  

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I hope you get some sleep soon.  I can really relate to not being able to sleep for more than an hour or 2 at a time, and it is so frustrating!

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FWIW Remeron works for me (most nights). I haven't gained any weight since I started it, which was around a year ago I think. I'm actually finding I don't have much appetite lately. I am very resistent to sleep meds, too. Benzos and Z-drugs don't do a thing for my sleep. Seroquel worked for awhile but stopped working. Sometimes I take 4 Benadryl if I still have trouble sleeping with Remeron alone. Sometimes a valerian pill as well.

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Have you tried SRT (sleep reduction therapy) ? Have you seen a sleep specialist about your insomnia? I also struggle with this issue and it got so bad that I was taking ungodly amounts of Ambien.  

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Have you had a sleep study?

I have so many damn problems with sleep too. I've tried everything as well. Right now klonopin, seroquel and lunesta help. But I still don't sleep through the night. I've thrown my hands up and am ready to give up! I need to get off seroquel too. I want to at least. But I guess if I need it I need it. Ugh

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I've had a sleep study for not being able to sleep and other ones for other reasons, but I just wanted to say that I didn't get a lot out of them because they said I got at least 5 or 6 hours of total sleep (even though I kept waking up, and I didn't sleep hard ... was a light sleep ... and I still felt like shit in the morning) so they didn't see a problem.

 

I'm not saying sleep studies are useless, I'm just saying what happened when I had some.  As long as I got enough combined sleep to equal an average night's sleep, then they didn't do much.  I have tried Ambien, but had bad side effects on it. 

 

And neuro now focuses on amount of sleep per 24 hours with me ... he knows I have insomnia, but is making sure that I get at least 6 or so hours at least in a 24 hour period, and not necessarily all in a row.

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I take trazodone 200mg which has no effect on me as far as sleep is concerned. But I was recently on Lyrica 150mg for post-op pain, and the two together - OMG. Passed out for 13 hours and felt fine when I woke up.

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Have you tried Thorazine or Loxapine? They are both antipsychotics... I have heard that Thorazine is really good. I didn't benefit from it, but I've heard it's very good. And Loxapine knocked me out when I first started taking it. Sleep meds don't really have an effect on me either. I was up to 400mg of Seroquel and getting 2 hours of sleep.

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Thanks all for your replies.  I really appreciate it.  Just to update, I haven't had any more episodes like that, but I still struggle with being able to fall asleep at times with the Trazodone, as well as excessive grogginess in the morning leading me to oversleep, sometimes be a little late to work, etc.  (And these are even on the nights when I can sleep the night before, so it's not like its lack of sleep.  Its like my Trazodone decides to "save up" its effectiveness for about the hour before I wake up, then releases all at once.)

 

FWIW Remeron works for me (most nights). I haven't gained any weight since I started it, which was around a year ago I think. I'm actually finding I don't have much appetite lately. I am very resistent to sleep meds, too. Benzos and Z-drugs don't do a thing for my sleep. Seroquel worked for awhile but stopped working. Sometimes I take 4 Benadryl if I still have trouble sleeping with Remeron alone. Sometimes a valerian pill as well.

 

Hi McJimJam, I think Remeron would ultimately be my next step if I can't remedy this with the Trazodone (like learning to tolerate a lower dose, etc).  Glad to hear it helps you.

 

Have you tried SRT (sleep reduction therapy) ? Have you seen a sleep specialist about your insomnia? I also struggle with this issue and it got so bad that I was taking ungodly amounts of Ambien.  

 

Jayne, I have not tried sleep reduction therapy though I have been tempted to do this on my own-- having thoughts of this particularly when I am still awake most of the night.  I start thinking that, "well, this isn't so bad, maybe withdrawing from sleep meds isn't such an insurmountable goal."  I started taking sleeping pills for "stupid reasons" IMO, and I know that once I get past the psychological dependency and rebound insomnia, that I would be able to sleep on my own again.  This sleep med situation has taken on a life of its own.  Of course, I wouldn't try anything without talking to pdoc first... and we may have more pressing med changes to consider.

 

Have you had a sleep study?

I have so many damn problems with sleep too. I've tried everything as well. Right now klonopin, seroquel and lunesta help. But I still don't sleep through the night. I've thrown my hands up and am ready to give up! I need to get off seroquel too. I want to at least. But I guess if I need it I need it. Ugh

 

 

I've had a sleep study for not being able to sleep and other ones for other reasons, but I just wanted to say that I didn't get a lot out of them because they said I got at least 5 or 6 hours of total sleep (even though I kept waking up, and I didn't sleep hard ... was a light sleep ... and I still felt like shit in the morning) so they didn't see a problem.

 

I'm not saying sleep studies are useless, I'm just saying what happened when I had some.  As long as I got enough combined sleep to equal an average night's sleep, then they didn't do much.  I have tried Ambien, but had bad side effects on it. 

 

And neuro now focuses on amount of sleep per 24 hours with me ... he knows I have insomnia, but is making sure that I get at least 6 or so hours at least in a 24 hour period, and not necessarily all in a row.

 

Cheese and Melissa, no I have not done a sleep study.  I was referred to one by a pdoc at my old IOP program but then learned shortly before the sleep study that insurance will only pay for it if my gdoc recommends it, not a pdoc.  My gdoc at the time seemed to be of the mind that I DIDN'T need it because the "medications kind of work, and you have to not be on sleep meds for it, so how will they be able to study you if you don't fall asleep like you claim you can't without the meds."  (Thank god/dess that I don't see that gdoc anymore-- she was very invalidating and appeared to have a prejudice against people with mental health issues.  Perhaps that is something I can explore with my new gdoc, insurance, and pdoc.

 

Have you tried Thorazine or Loxapine? They are both antipsychotics... I have heard that Thorazine is really good. I didn't benefit from it, but I've heard it's very good. And Loxapine knocked me out when I first started taking it. Sleep meds don't really have an effect on me either. I was up to 400mg of Seroquel and getting 2 hours of sleep.

 

Minion, no, I haven't tried either or those.  I've actually not heard of Loxapine-- is that available in the US?  I'm a little wary of any AP/AAP medications because I've gotten akathisia and really bad anxiety from the 5 I have tried (Abilify, Risperdal, Zyprexa, Trilafon [old school AP], and even Seroquel).  But it's worth looking in to.  Thanks!

 

Hope we all get some sleep soon!

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I think it is definitely worth exploring with your new gdoc.  For one of my sleep studies I had it done anyway, even on meds, because it still could show something, just less likely.  But because there was a chance of it, my DR said yes to it.

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Thanks all for your replies.  I really appreciate it.  Just to update, I haven't had any more episodes like that, but I still struggle with being able to fall asleep at times with the Trazodone, as well as excessive grogginess in the morning leading me to oversleep, sometimes be a little late to work, etc.  (And these are even on the nights when I can sleep the night before, so it's not like its lack of sleep.  Its like my Trazodone decides to "save up" its effectiveness for about the hour before I wake up, then releases all at once.)

 

 

Have you tried Thorazine or Loxapine? They are both antipsychotics... I have heard that Thorazine is really good. I didn't benefit from it, but I've heard it's very good. And Loxapine knocked me out when I first started taking it. Sleep meds don't really have an effect on me either. I was up to 400mg of Seroquel and getting 2 hours of sleep.

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Thanks Minion, Melissa, and Sylvan for your replies.  

 

Minion, I'm a little wary of the AP/AAPs, just because I've experienced akathisia on all 5 that I've tried...even the sedating ones (in fact, one of the worst med-related feelings I've ever had is being physically and mentally exhausted/zombified from Seroquel yet being unable to sleep due to restless legs, jumpiness, racing heart, shakiness, etc... and that occurred at doses ranging from 25 to 100mg).  I will bring it to my pdoc at our next appt tomorrow though.  

 

Sylvan and Melissa, I agree that continuing to take more and more sleep meds is not really the answer.  I am having some issues with my new gdoc not seeming to take my concerns seriously (and we are focusing on chronic pain stuff now) due to me being a "psych patient" (or so it seems, based on comments she has made).  I do believe I still have the old paper referral from that IOP pdoc a few years ago.  I plan on showing that/discussing this with my current pdoc and perhaps she can help me advocate to my new gdoc for the sleep referral.  Actually, I think I will call my insurance because I have a different one than I did before-- who knows, I might even be okay with having a pdoc referral, so I want to clarify if it actually must be a gdoc.  (I also have another insurance question to ask in the process).

 

I'll keep you all posted if you are interested.  Thanks again.

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A pdoc has an MD after their name just the same as any doctor. They should be able to order any test they're comfortable ordering. At least that's how it works around here.

 

Works around here like that also.

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I wish I had some insight in how you can get relief from this but all I can offer is the knowledge that you are not alone. In fact, your medication history sounds oddly similar to mine. I have tried nearly every med there is with either limited results (Ambien, Lunesta, etc. just stopped working) or a feeling of being over-medicated (Trazadone, Seroquel). I currently take xanax PRN which is most of the time now and that is not something I would recommend. It works but only for the 4 hrs. that the med is effective. As if it were as benign as benadryl, it wears off and I wake up. I rarely sleep more than 5 hrs and I sleep very, very lightly.  Btw, this is in addition to Klonopin but I have to say that I have never really become sleepy from Klonopin. I can take it and function just fine. In my case I think the avoidance of sleep is a huge impediment to my ability to get a good nights rest. I avoid it for as long as I can b/c of nightmares and PTSD flashbacks I get first thing when I wake up. If only I could fix those problems...

 

Sounds like you have tried just about everything and like I said, I wish I had some more to offer. Sleep is such an incredibly important thing and I am sorry that you are struggling to get some as well. Again... you are not alone!

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I too struggle from sleep and have tried various sleep medications, anti-depressants, APs, AAPs, benzos, and anti-histamines, all of which have failed. I spend most nights struggling to get a few hours and find myself sleeping more during the day.

 

On nights that I am successful, its usually because I started medicating a few hours before getting into bed. Sometimes when you take medication all at once, it releases into your system differently, or the medication can react with each other and cause unwanted effects like increased heart rate, restlessness, etc. so I found that taking my different sleep meds at different times (i.e: a cannabis edible around 7:30, chamomile tea with food + ativan around 9ish, norco with food + smoking cannabis around 9:45-10:30) allows me to stay asleep through the night. I see a medical marijuana specialist, my pdoc and my gdoc for my sleep + pain issues. Many psych meds exacerbate my porphyria, so cannabis is something that has been helping me a lot. I do not recommend using it without talking to a doctor first.

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I do understand your dilemma, for I have the same problem. I, too, was sexually abused at a young age and my psychiatrist mentioned that my fear of sleep more than likely stems from this abuse. I take Elavil now and it works great for me. I've been on EVERYTHING, including the benzos which give me really bad amnesia, but I do think they work well for me. 

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