36 replies to this topic

[RileyBell]

To begin, I want to be clear that when I say I have insomnia, I don't mean that falling asleep is 'difficult' or that I wake up often during the night and have to fall back to sleep. What I mean is that to sleep AT ALL is a struggle. It's a battle every single night. I can't even fathom how amazing it would be to go to bed the same time as my husband and actually fall asleep next to him.

When I tell my doctors, they almost laugh a bit and tell me, 'When your brain gets tired enough, it's GOING to fall asleep. That's simply how our brains work.'
I try to explain that I can go 4-5 days/nights without sleep, but I get the sense that they just don't believe me. I'm not saying it's always that way. But when it's at it's worst, that's how it is. When it's at it's best, I takes me 4-8 hours to fall asleep (thankfully I work from home. But that is changing soon. If I can't get this under control... I don't know what I'll do.)

I have good sleep hygiene. I've taken all the 'natural' things like melatonin, etc (which will work for about one day and then my brain already has a tolerance for about the next year).

I get extremely tired, but fail to ever feel sleepy.
The only way I am currently able to sleep at ALL is because of Seroquel. But because it causes severe panic on totally random nights, I have to continue to take a higher dose of xanex (as a preventative sort of thing. The panic is the worst I've ever felt in my life when Seroquel randomly causes it) than I or my doctor would like for me to take.

My pDoc seems frustrated with trying to fix anything after all these years and just keeps refilling the exact same meds I'm on unless I know exactly what to ask for.

So I'm begging you guys for some suggestions...

The Ambien I take only calms racing thoughts. It doesn't make me tired. The Nuerontin doesn't cause sleepiness either. And of course the Xanex hasn't made me sleepy since the first year I was on it.

I just want some sort of medication that I can count on to put make me sleepy.
I don't tolerate SSRIs very well. And tricyclics are a hit and miss on whether I can tolerate them. Most other medications I can do alright with.

[metatrix]

What about an anti-histamine? Ever tried taking benadryl or gravol? Knocks me right out.

[RileyBell]

Tried anti-histamines, hydroxyzine, 5-htp, melatonin, GABA, (whatever that stuff is that it's turkeys), hops,....... pretty much everything that's ever been available over the counter. I'm thinking there's got to be an atypical anti-psychotic (or just aaaaanything!) that knocks ya off your feet. That's the kind of intensity it feels like I need.

I've done the meditation, the refraining from naps, every wives tale treatment that's been thrown at me. I swear I feel like the collective knowledge of this forum is my last hope!

[Rockie]

You're on a pretty healthy dosage of Xanax, and it sounds like you've been taking it for a while. How long has this been going on? When and how much are you taking, and is your anxiety under control during the day?

If you've developed physical dependence and tolerance to your current dosage, varying the frequency and amount you're taking, which it sounds like you are, can easily cause backlash anxiety manifesting in the symptoms you're describing. This could also explain the panic attacks you're experiencing on Seroquel (i.e. Seroquel is knocking you out, but withdrawal is waking you up with a panic attack).

Med suggestions are difficult if the above is the case. I'll wait for your reply before making any recommendations.

[metatrix]

Tried anti-histamines, hydroxyzine, 5-htp, melatonin, GABA, (whatever that stuff is that it's turkeys), hops,....... pretty much everything that's ever been available over the counter. I'm thinking there's got to be an atypical anti-psychotic (or just aaaaanything!) that knocks ya off your feet. That's the kind of intensity it feels like I need.

I've done the meditation, the refraining from naps, every wives tale treatment that's been thrown at me. I swear I feel like the collective knowledge of this forum is my last hope!

Geodon knocked me out. Like, I would fall asleep in the middle of sentences, while eating dinner at the dinner table, everywhere. People thought I was on heroin it was so bad. But, people react differently to drugs, and some people don't find Geodon sedating at all!

By the way, have you had a proper physical exam and blood work to rule out any medical conditions?

Edited by metatrix, 17 March 2012 - 06:06 PM.

[RileyBell]

Yes, blood work is all normal. I haven't done a sleep study yet mostly because the thought of sleeping in a lab freaks me out. But the regular kind of check-ups have gone fine. I've also been avoiding a brain scan because... well because I'm bat-shit crazy (as in, there is no good reason, I am just avoiding it like the plague)

Yes, while my dosage of xanex can be viewed as high, it's a lot lower than it used to be. Right after my PTSD started, doctors somehow saw it fit to put me on 8mg Xanex and 8mg Xanex XR, every day, for years and years on end. About two years ago I found another doctor who was willing to slowly bring me down. Withdrawls have been hell. But seeing as the 1mg of regular Xanex is as needed for anxiety (which only seems to be when Seroquel acts up, which will either hit EXACTLY 25 minutes after ingestion or not at all. [leaving me to take 75mg or so, wait and see if it's giving me anxiety or making me sleepy... if neither, another 75mg and so on until I'm sleepy {that way if I get the panic reaction from the Seroquel, it's the most mild possible. Because, say I go ahead and take 300mg and that's a night I'm going to panic from it... well in that case the panic is going to be so severe, it'll land me in the ER}. I know that sounds weird, but it's exactly how it happens. My pDoc hasn't taken the time to listen to my full explanation or understand it). And the Xanex XR is being taken 2mg morning and 2mg at night.
Between the Xanex XR (which I feel I'm ready to go down to 1mg morning and night) and the Gabapentin, it's fairly rare I get anxiety (and when I do, I can calm myself down and distract myself to get through it without medication) and it's almost never that I get a panic attacks separate from 25 minutes after taking Seroquel (I would never take it again if it weren't for the fact that 85% of the time, or so, it helps me sleep and without it, as I said, I will seriously go days without sleep!)
Hope that gives the info so I can get some guidance! :-)

[RileyBell]

BTW, has anyone used Thorazine for sleep? I've had to use them for 18hr+ hiccups and slept amazingly well on it the two nights I was able to use it.

[Her]

When I tell my doctors, they almost laugh a bit and tell me, 'When your brain gets tired enough, it's GOING to fall asleep. That's simply how our brains work.'

I have had exactly that conversation with more pdocs than I care to remember. It got to the point where I started wanting to yell "No, you fuckwit, that's how your brain works. I have bipolar disorder-my brain does something else!" Considering how badly not sleeping messes up the rest of your life, it's astonishing to me how lightly a lot of doctors treat it.

Have you tried taking less Seroquel? If you aren't taking it as an anti-psychotic, you may be taking too much to get the best of the drowsiness effect.

[Nurse Ratched]

Agree that Geodon is extremely sedating but very unpredictable. I fell asleep standing up taking it. And I couldn't wake up taking it. Really messed with sleep stages, too.

Ever try depakote or zyprexa for sleep?

Haldol could be an option, too, or the thorazine that you know worked.

[metatrix]

Agree that Geodon is extremely sedating but very unpredictable. I fell asleep standing up taking it. And I couldn't wake up taking it. Really messed with sleep stages, too.

Ever try depakote or zyprexa for sleep?

Haldol could be an option, too, or the thorazine that you know worked.

Heh, speaking of unpredictable reactions, I'm getting insomnia on depakote. Which is really weird, given that I find practically every drug in the world to be sedating. I'm just a generally sleepy person. But I have trouble falling asleep on depakote, and I wake up in the middle of the night, totally alert. What the hell?

[Nurse Ratched]

That is really weird. Different strokes I guess.

[martasi2]

Right after my PTSD started, doctors somehow saw it fit to put me on 8mg Xanex and 8mg Xanex XR, every day, for years and years on end. About two years ago I found another doctor who was willing to slowly bring me down. Withdrawls have been hell.

You might need some other answer, like PTSD therapy or a therapy technique (EMT, hypnosis, etc.) that helps relax your body. Your muscles are probably too tense and that makes it hard to relax enough to sleep. You also might want to ask your PDoc to take you off Xanax entirely and, while you're doing that, try a longer-acting benzo that won't trigger so much rebound anxiety. Seroquel also has a paradoxical reaction in some people that makes them more revved up and agitated. I'm not saying this is the case with you, it's just something to factor in.

[RileyBell]

First, I just have to say thank you so much to everybody! I've never found a more helpful bunch. My friends swear my chamomile tea and don't understand why that doesn't work.

So I'm in bio-feedback therapy, which, of all the things I've tried over the years (you name it, I'd tried it, from the major types of counseling, to really strange ones, to hypnosis, etc), has been massively helpful.

When you say a longer acting benzo, martasi2, is there a longer acting one than Xanex XR? If I could get the sleep thing figured out I'm positive I could end up on only it.

I haven't taken depakote, zyprexa, or Haldol for sleep. I'm insanely good at (and have always made a habit of) acting like I'm very high functioning during my pDoc visits. I kind of feel like she'd laugh at me for even mentioning those meds. But I'm definitely going to do it. Ahh, even imagining bringing that up makes me feel really nervous. I'll just stop by the forums ahead of time to remind myself how un-alone I am.

I'll try to make a habit of taking a lower dose of seroquel and giving myself longer than just the 30 minutes I normally give myself to see if it's going to work before taking another dose. We'll see if that does effect things at all.

[Rockie]

Safe to say that you've tried the usuals - Remeron, Trazodone? If not, they're worth trying since they have different mechanisms of action for sedation.

I'm also wondering if a combo will work for you for just that reason. When I added Trazodone into my cocktail, I got (and am still getting) hit with a lot of additional sedation. And this on top of the Remeron and gabapentin sedation. I suppose you could also try them in addition to the Seroquel, though it might be better if you can phase that out due to the high dosage you're requiring for sleep (not to mention the weird panic reaction).

[RileyBell]

So I do I go in and ask for Remeron (haven't tried that), Trazodone (don't remember if I've tried that)? Or do I ask for major sedatives like depakote, zyprexa, or Haldol? I somehow just don't trust going in and asking my doctor to figure something out..... :-/

[metatrix]

So I do I go in and ask for Remeron (haven't tried that), Trazodone (don't remember if I've tried that)? Or do I ask for major sedatives like depakote, zyprexa, or Haldol? I somehow just don't trust going in and asking my doctor to figure something out..... :-/

I wouldn't call depakote or zyprexa major sedatives. My guess is that trazodone and remeron would be more sedating than depakote or the atypical antipsychotics. Although I haven't been on trazodone or remeron, so I'm not sure.

p.s. I'm awake at 4 AM on depakote again. wheeee.

Edited by metatrix, 18 March 2012 - 01:38 AM.

[Her]

I've taken depakote and geodon...Geodon was the absolute worst drug I've ever taken in terms of sedation, but ti didn't work as a sleep med because there was no rhyme or reason to when it would make me fall asleep. Like Nurse, I could fall asleep standing up, or at stop signs, but still be unable to go to sleep at bedtime, and then in the morning be unable to wake up and end up staying in bed for 14 hours semi-concious. Depakote made me feel sort of drained, but not sleepy, exactly.

I've tried amitriptyline, Klonopin, Ativan, trazodone, Lunesta, Rozerem, gabapentine, mirtazapine, Sonata and temazepam for sleep. The only thing that works is Ambien CR 12.5 mgs, 75 mgs of Seroquel IR, and I take my Seroquel XR and topiramate at bedtime too, so they're probably playing a role as well.

Good luck to you. Insomnia is horrible and dangerous. I hope you get it dealt with soon.

[Rockie]

So I do I go in and ask for Remeron (haven't tried that), Trazodone (don't remember if I've tried that)? Or do I ask for major sedatives like depakote, zyprexa, or Haldol? I somehow just don't trust going in and asking my doctor to figure something out..... :-/

I'd try low dosages of Remeron and Trazodone first, since they tend to have fewer side effects (besides sedation). Remeron below 15mg is pretty much just a super powerful antihistamine, similar to Seroquel at low dosages. Trazodone at low dosages (say 25 - 150mg) works in a different way - antagonizing H1, alpha 1, and 5-HT2a - to achieve sedation.

I'd try Remeron first, starting at 7.5mg up to 15mg, assuming Seroquel doesn't work out. If that doesn't do it, I'd try Trazodone starting at 50mg up to 150mg. If you're still not sleeping, I'd try both at the same time. BTW, the sedating action of the two together is not very different from Seroquel at 300mg. Also, since they're both anxiolytics, you may get some anxiety relief as a side benefit.

Edit: Just wanted to add that between your sleep situation not being taken seriously and not trusting your pdoc to properly handle it (with meds), I'd be shopping for a new pdoc.

Edited by Rockie, 18 March 2012 - 11:36 AM.

[girrl88]

If you don't remember whether or not you've tried Trazodone I'd go with that first. You'll be able to tell within a few nights if it's going to work for you so you can have a backup plan (or prescription) in place in case it doesn't work. Remeron is a very good one to try as well.

I am also concerned that you don't trust your pdoc to be able to help you get through this. Maybe it is time to start quietly looking for a new pdoc, or to talk to your pdoc about your concerns that he/she is not taking your insomnia issues seriously enough. Insomnia is a very serious issue as it can complicate and exacerbate MI not to mention the fact that you can become drowsy or fall asleep at dangerous and inappropriate times.

[VAL]

Trazodone worked for me at a time in my life around '94 when nothing else was working and I'd had insomnia since early childhood however, there are times when it would termporarily stop working. I went on Saphris in August...it's not something I'd run to for sleep problems as it's really hitting hard with an AAP but if nothing else works, it might work for you. Gives me some of the best sleep I've ever had without waking up feeling groggy or sedated though occasionally, I don't sleep that long on it. I take it for other reasons though so again, I wouldn't run to it unless all else fails and I think Zyprexa (which was also very sedating for me) is probably cheaper.

[RileyBell]

I realize now that I did take Remeron for a while (remembered it under the name Mirtazapine). It did work amazingly well for sleep. But made my hunger insatiable!!! I would be starving every 30min to an hour. I gained 50 pounds in 4 months! I was on a very low dose. And I'm not gonna sit here and whine about insomnia but be vain. It's not vanity, it was that the weight gain's end was nowhere in sight! So I'm pretty sure that's a no go.

I'll do a lot to research/look into all the meds you guys suggested and try to have a really serious talk with my pDoc. If she doesn't take is seriously, I'll start looking into someone else. I just have this real fear of ending up with one of those pDocs who are crazy against benzos. And while I will likely be off them (or to a very low dose) within 6 months, having to do a hardcore withdrawal isn't something I can handle right now.

[VAL]

Not all doctors will do it but see if it's possible to have a brief discussion with one before seeing him/her to get an idea of their opinion of your desire for a gradual withdrawal. If not, you can keep your pdoc while you look for another.

As to sleep studies....I barely slept for mine, it really is difficult if you have severe insomnia to sleep during a sleep study but even if you don't sleep...it's going to track what's going on in your head while you're trying to sleep and it might be helpful for a doctor who actualy knows about different sleep disorders.

[Mr_West]

So I do I go in and ask for Remeron (haven't tried that), Trazodone (don't remember if I've tried that)? Or do I ask for major sedatives like depakote, zyprexa, or Haldol? I somehow just don't trust going in and asking my doctor to figure something out..... :-/

I wouldn't call depakote or zyprexa major sedatives. My guess is that trazodone and remeron would be more sedating than depakote or the atypical antipsychotics. Although I haven't been on trazodone or remeron, so I'm not sure.

p.s. I'm awake at 4 AM on depakote again. wheeee.

Any of Depakote, Zyprexa, Trazodone, or Remeron can be very sedating. The last three at any given dose and Depakote increasingly as the dose moves up. Often as a group the typical antipsychotics are referred to as major tranquilizers while benzos are referred to as minor tranquilizers. This is not a very clean or effective description though.

None of these are hypnotics though. Ambien, Temezapam, others, these are hypnotics. Sedatives make you drowsy, but hypnotics make you sleep.

If you are largely one one class of drug like anticonvulsants, using something from another class like seroquel in this example may be reasonable. Or in reverse largely being on APs and AAPs temezapam may be a great sleep med. You just can't count on hitting the same receptors with the same actions and count on it working unless it does.

[ci317]

Is it possible that you have bipolar disorder? Panic/anxiety/insomnia can all come as symptoms when you're up on the high side. Some mood charting might shine some light on patterns.

[facelessbelief]

Geodon has a sedating ability? Damn, I missed that bus. Instead I have to take Ambien for sleep. But am worried about it long term. My Pdoc actually has helped me address my insomnia. Bipolar disorder does make our brains run differently. Its like theirs run on gasoline, while ours run on nuclear fusion. Or some kind of comparison. (may be a bit strong of a comparison)(But i made it anyways.). Ambien was good for the first three weeks. But is starting to loose its muster I think. Or I am just going into a hypomanic phase. Not really sure what is going on right now. Life has been a little goofy.

[Mr_West]

Geodon has a sedating ability? Damn, I missed that bus. Instead I have to take Ambien for sleep. But am worried about it long term. My Pdoc actually has helped me address my insomnia. Bipolar disorder does make our brains run differently. Its like theirs run on gasoline, while ours run on nuclear fusion. Or some kind of comparison. (may be a bit strong of a comparison)(But i made it anyways.). Ambien was good for the first three weeks. But is starting to loose its muster I think. Or I am just going into a hypomanic phase. Not really sure what is going on right now. Life has been a little goofy.

I realize now that I did take Remeron for a while (remembered it under the name Mirtazapine). It did work amazingly well for sleep. But made my hunger insatiable!!! I would be starving every 30min to an hour. I gained 50 pounds in 4 months! I was on a very low dose. And I'm not gonna sit here and whine about insomnia but be vain. It's not vanity, it was that the weight gain's end was nowhere in sight! So I'm pretty sure that's a no go.

I'll do a lot to research/look into all the meds you guys suggested and try to have a really serious talk with my pDoc. If she doesn't take is seriously, I'll start looking into someone else. I just have this real fear of ending up with one of those pDocs who are crazy against benzos. And while I will likely be off them (or to a very low dose) within 6 months, having to do a hardcore withdrawal isn't something I can handle right now.

Crazy against benzos isn't bad. Crazy against evidence is though.

BTW, has anyone used Thorazine for sleep? I've had to use them for 18hr+ hiccups and slept amazingly well on it the two nights I was able to use it.

In theory it sounds like a much cleaner version of seroquel. It should be cheaper too. Thorazine should be worth a fair trial. A lot of the older typicals will carry less side effects than the AAPs.

Yes, blood work is all normal. I haven't done a sleep study yet mostly because the thought of sleeping in a lab freaks me out. But the regular kind of check-ups have gone fine. I've also been avoiding a brain scan because... well because I'm bat-shit crazy (as in, there is no good reason, I am just avoiding it like the plague)

If you try hard enough a physiologicall problem can probably be found. Screening can be great though for ruling out the nonsensical.

[Nurse Ratched]

I say Haldol! Good stuff. I take it and an hour later, I cannot keep my eyes open. Good hard sleep and no hangover the next day. So, my opinion has definitely changed.

[allieincrazyland]

I have chronic insomnia and have for most of my life. I have been on countless meds to control it and none of them worked long-term. I will say that Trazodone worked well for a few months. I went from 100 mg to 400 mg in 3 1/2 months and then it started sending me into mania so that was it. While it worked, though, it was awesome. I tried Haldol but it didn't work for me at all - again, I was manic instead of sleepy. I've had to learn a lot about sleeping by myself because many pdocs don't take insomnia seriously enough. Forget 4-5 days without sleep - I've gone as long as 9 with absolutely no sleep and as many as 13 with a few episodes of falling asleep for a few minutes at a time.

One of the things I do is chant a mantra over and over as I'm trying to sleep. I say outloud three words, "Sleep, just sleep". It slows my thoughts down and sometimes allows me to fall asleep even if I don't stay asleep long.

I sincerely hope you find something that works for you. Insomnia has an affect on all aspects of our lives and whatever flavor MI we have, it only worsens the symptoms.

Unlike you, I will take naps. Anytime I'm sleepy, I stop what I'm doing and I go to sleep. I'd rather have an unusual sleep pattern than none at all. I know my circadian cycle is permanently screwed and I don't see me as ever being one of those people who can fall asleep at night and wake in the morning. There is an advantage to that - I get a lot of work done when the house is quiet, the phone is not ringing and there's no one around. My little dog would appreciate it if I would sleep normally but she's a puppy, she'll get used to my oddities soon!

[thief of light]

I know you've said you're anxious about getting a sleep study done, but I highly recommend it, just to rule out anything else that might be going on. I have trouble falling asleep and staying asleep myself, and I just found out that a major reason I'm not sleeping through the night most nights is that my oxygen saturation rates were dropping into the 70s when they should be in the 90s! No wonder I couldn't sleep.

A lot of hospitals have space in a hotel, rather than a lab. You can always ask and see what the facilities are like, even tour them. Another option would be to have one done in your own home - the doctor can have some of the equipment sent over.

Either way, it's definitely worth it to have it done just so you know what's going on.

[jendaizbee]

I wish I had an answer for you, because then I'd have one for myself too. I have had insomnia all my life. When I was hypomanic, obviously it was worse, but I'm not usually hypomanic. I always have insomnia. Like you, I have tried pretty much everything, including Thorazine which worked in the hospital, but my Pdoc won't prescribe it (and honestly, I don't really want to take it because of tardive dyskenisia). I am currently on Ambien, Vistaril, Clonazepam, and huge dosages of Melatonin, just to sleep. Still, it takes hours to fall asleep. Sometimes I am simply awake all night or I sleep for two hours. I was recently on too high a dosage of Prozac and began becoming hypomanic, but in all honesty I wasn't sleeping much better before that when I was definitely not the least bit manic. This has been going on for so long, I don't know what to do anymore. I had a sleep study in like 2003 and they actually told me I did not have a sleep disorder (unbelievable). I told my pDoc recently it would take chloral hydrate to make me sleep. Of course, he's not interested in trying that. I started doing biofeedback this week and I only hope the universe is kind enough to let it work for me, because I have a good doctor and he's at a loss as to what will help me. I've tried herbal things like Valerian Root, huge dosages of Benadryl, and pretty much everything normally prescribed for sleep except stuff that's not covered by Medicare. It's a nightmare not being able to sleep. I'm thinking I need another sleep study. Good luck!

Edited by jendaizbee, 04 May 2012 - 10:13 AM.