Severe, chonic insomnia - looking for new ideas - ANYTHING!

By katysara Tuesday, July 08, 2008

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Hi guys.

I have, for my entire life, suffered with severe insomnia. As a baby I slept one hour a night, and whilst a child and teenager I thought it normal to go to bed a 2am, toss and turn, and get up again at 5-6am. (I used to read books by torchlight under my duvet!) Yes I was diagnosable as bipolar from at least 5, and this no doubt plays a roll. When manic I don't sleep at all (but that is fine), and when depressed I struggle to get a couple of hours - nights are ENDLESS. When mixed I guess I get about an hour a night and am so ill... well, you know what it's like.

BUT, when euthymic (and some people who know me well know I am not currently euthymic, I am depressed), I STILL don't sleep.

Now I do all the sleep hygiene stuff - room the right temperature, nice clean sheets, a little lavender oil, not eating for a couple of hours before bed, restricted alcohol intake :cry: and all things along those lines. I've tried hot baths, drinking milk, drinking camomile tea. I guess I fail at the getting enough exercise, but there have been times when I cycled 50-75 miles a day and still didn't sleep...

On top of all that I am on 10mg Nitrazepam (max dose, don't think you have it in the USA, it is a long-acting benzo), 20mg diazepam (30g is max dose in a day, but it is meant to be split), and 5 x 707mg chloral hydrate tablets (usual dose is 2, maybe 3). I am on 600mg of seroquel/quetiapine also, but it doesn't make me drowsy. Lithium obviously doesn't make me drowsy. I am not withdrawing from any sort of drug or alcohol. AND still I DON'T SLEEP. Typically I sleep 1-2 hours a night AND I CANNOT GO ON LIKE THIS.

My psychotherapist Tony is a resourceful chap, and he suggested I ask all of you for any suggestions. Any of you have therapy/CBT for sleep? Literally any ideas are welcomed, indeed, desperately needed. This lack of sleep is worsening my control over manic, depressive, and mixed episodes. It is making me ill - hell, maybe it is why I became ill in the first place?

HELP!

Love,
Katy Sara Culling x

www.katysaraculling.com/

katy.sara@bipolar-foundation.org

Not Working - Lack of Anxiety - Sleep Cycle & Substances

Comments (12) | Add comment

Eric

7/ 9/08 5:12am

I think your biggest problem with getting any sleep is the fixation you have on trying to sleep. It's kind of like an ear or tooth ach that the more you think about it the worse it becomes. I too used to have issues with getting enough sleep. I think it is also time to get rid of that excessive baggage of always looking toward your past to explain whats going on with you today in the present.

I am not sure who in their right mind would ever diagnose a child of 5 with the illness, but I guess there are always a few. Get rid of the crap in the past that you keep carrying around like a badge of courage. It's only holding you back.

Here is my suggestion or at least how I am able to get the required sleep. I have a firm belief in god...at the end of the day, same time every night (around 9:30 pm), I take my medications, climb into bed, say my prayers for everyone thanking god for another good day (any day I wake up to put my feet on the floor is a good day) and any issues that seem to be bothering me or are left unresolved I give up to him for the night.

This allows me to clear my mind and get a restful sleep...any issues left over can be taken care of the next day with a different outlook on things. I see you have written a book called dark clouds....good for you. If you get a chance, any helpful advice on how to get mine published (www.mentalhealthus.com) would be appreciated.

katysara

7/11/08 7:20am

I think you are spot on when you say having a fixation on sleep (or lack of it) makes things worse - but I am not sure how to make that anxiety go away - hence I thought maybe someone out there knew of some kind of therapy that might help.

I wasn't diagosed at 5, I was diagnosable, as in fully symptomatic. It is diagnosed in kids as young as 3 these days, though that is rare. I was diagnosed at 28. I am not living in the past, that was one reason for writing my book, to get it all out of me.

The praying part wont work for me. I deeply respect another person's right to their faith and indeed am often jealous that I feel no presence of a higher power - I am sure it would be soothing. But I am an atheist, and a pretty firm one at that... so praying is out. A good idea though, and maybe it will help others who read this.

As for your book (Mine is called DARK CLOUDS GATHER, not Dark Clouds), I will send you a priviate message because I do have a few ideas.

KSx

su1

7/ 9/08 10:12am

Wow, I feel bad for you, especially given that all these meds you're already taking just aren't helping... trazadone helped my sister-in-law (though it did nothing for me) - I read once that it's commonly paired with Prozac to offset Prozac's activating qualities.

I had too much caffeine yesterday so I had to take extra Clonazepam to knock me out last night & of course now today, I feel groggy AND tired still (up too early) and want to drink more caffeine again - vicious cycle. Can you tell me about your experience with benzo's? I know they are supposedly addictive & have experienced this somewhat from time to time (so I then cut back and just rest for 2 days); it's 'borrowed energy' and we pay later, with interest. But I, too, would like to ask everyone: Is there anything else that can help with sleep? As soon as I am stimulated at all, with work or visiting or anything, my sleep gets so disrupted that I don't have much choice in having to taking more meds, which is then frustrating because if anything, I'm still groggy & feeling out of it afterwards, anyways, and then of course gaining weight when I take more meds...

My own pdoc has mentioned Valarian Root, but it takes 3 months to work (so I can't see it working all that well); I've heard of Melatonin, and wonder if that helps anyone? I know of people (with or without BD) taking Gravol to help them sleep - maybe we should both try that, though I'm weary to add yet another medication to my mix, given that even regular cough medicine, allergy pills and ibuprofen all throw me for a loop (though apparently Benadryl helps some people with sleep). Having a small bowl of cereal with milk (instead of milk alone) personally helps me at least to some extent. I make sure to not be on the computer for several hours before bed, since I find it really activating (great for helping me wake up in the morning, though)...

Let me know if you find any answers!

Take Care,

Sharon

katysara

7/11/08 7:26am

Hello again! Valarian root did nothing for me - tried it - but it still might word for you.

Regarding benzos, yes, by all definitions off addictive they are addictive, but frankly I don't care because sleep and the maintenance of some semblance of normality. Plus I have this freaky thing about myself where I don't get addicted. I can change meds (from addictive ones to others) with no problems. I can stop my meds at any time with no side effects. I do not think the same is true for most people.

Thank you for your reply and good luck sleeping.

KSx

HeyJude

7/ 9/08 10:58am

katysara...Insomnia is such a difficult problem - I really empathise with you.

When I'm on the manic side I have severe problems with insomnia. My doc prescribed lunesta, a good med for sleep. Very few side effects and it really works for me.

I've also heard that burning incense is good for the bipolar brain. You might try a pleasant scent that you like just before going to sleep. It seems to help on those dreaded sleepless nights.

Also, not eating anything after 6 pm sometimes helps. If I really get hungry before bedtime, I'll have a glass of milk with an aspirin. Don't know why that helps, but it does. Or, as Sharon said, a bowl of cereal. We all sleep best on a somewhat empty stomach.

If you haven't tried it, meditation in great before bedtime. It shuts down the racy mind and helps bring me to a peaceful state. And it's pretty easy to do. Hope these folks' suggestions help you get some sleep.

Judy

katysara

7/11/08 7:27am

Thank you Judy, all those ideas are noted and will be tried!

ksX

Choronzon

7/ 9/08 11:30pm

Biofeedback therapy, everybody.

katysara

7/11/08 7:28am

I don't understand! KSx

su1

7/10/08 8:21pm

http://www.matthewgood.org/2008/03/born-crazy/

Canadian singer/songwriter Matthew Good has Bipolar Disorder. Both him and Heath Ledger have suffered extensively with insomnia. Here are Matt's comments about it.

Sharon

katysara

7/11/08 7:54am

Thank you that was intersting to read. Sometimes I think I am immortal. I have taken all kinds of mixes of pills, and at stupid doses, but always survived. That does not make any of those overdoses (for that is what they were), safe. A bit like Heath Ledger, all I wanted was some sleep... I have survived so far. (I guess I am lucky in that I am a medical scientist by training, and as such, would know what to mix and what not to mix, unlike Heath).

KSx

John McManamy, Health Guide

7/12/08 11:33pm

Hey, Katy. All the suggestions here are very good. I'll add one thing, based on my own experiences. I find when I can't sleep it is because something set me off. For instance:

Someone may have pissed me off. Then I get angry. Then my thoughts start racing. Bingo! No sleep.

Or, I get a creative idea. Racing thoughts. You know the rest.

Or, I get anxious. Racing thoughts. No way counting sheep will help.

Sometimes it's travel and time zone changes. My brain thinks its somewhere else and won't turn off.

You are obviously extremely good about your sleep hygiene. But maybe you need to work on the things that possibly throw off your sleep. Often, through mindfulness techniques, I can catch my anger and other disturbances while they are still manageable, before they get my thoughts racing. Not all the time, mind you - I'm human.

The trick for me is to make sure my thoughts aren't racing when evening rolls around.

You mention you take a benzo. Presumably this is a night time med. You might want to ask your pdoc about using the benzo on a PRN basis. In other words, if you get agitated or anxious in reaction to a daytime event, or want to avoid getting agitated or anxious when you see it coming, then you may be able to head off insomnia at the pass, well before it happens.

Mind you, this may not apply to you. But you're a good friend and you sound very desperate, so I'll offer it up and see how it resonates with you.

Keep in touch -

Anonymous

7/16/08 5:50am

Try valerian root and melatonin - really knocks me out!

Severe, chonic insomnia - looking for new ideas - ANYTHING!

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