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Insomnia for 20 years


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Hello everyone.  I have a pretty extreme case of insomnia that has plagued me since I was 16 years old and which only continues to get worse as time goes on.  How it started has been a medical and psychological mystery, but why it persists is largely on me.  I think.

 

Here's why I feel that way:

 

For the past two months, I have been going through a pretty severe bout of it where I'm fortunate if I get one decent night's sleep in a week.  The rest of the time I either don't sleep at all or very poorly.  After being subjected to it for 20 years, getting no answers from the medical community, no answers from the psych community, and having it cost me every job, relationship, and friendship that I've ever had on top of my physical fitness, well being, overall health, and even sanity, it has almost become a phobia of sorts.  More aptly, it is a conditioned response where sometimes the fear and anxiety of not being able to sleep is so great that it can't even be overcome with medications while other times it's as if my mind/body has simply forgotten how to sleep.  

 

I've had just about every pill under the sun thrown at me but I might as well be taking a vitamin for all the good it does.  I have another sleep study coming up on August 7th but because of 20 years of no answers and failed attempts at resolving it, I'm unfortunately a bit pessimistic about it.  I'm trying to stay positive but I am exhausted and almost everything that I've tried either doesn't work or only makes it worse (such as exercise, sadly enough).

 

Has anyone else heard of or dealt with insomnia that has lasted this long or with any of the things that I mentioned?  Even if you haven't, does anyone have any recommendations for what I might be able to do to get it back under control?

 

Thank you for your time. :)

Edited by SleeplessKnight
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A sleep study explained why I can't sleep and why it takes such a large dose of sleep meds to keep me asleep. Some people need large doses of sleep meds to sleep but should not try this until they have had a sleep study and eliminated physical causes of insomnia.

Edited by notfred
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I have had a 4 sleep studies in the past 12 years.  I have found that none of them aimed at trying to find out why I couldn't sleep. They were more interested in the readings they got while I was asleep. As a matter of fact, they insisted I take my regular nightly meds.  I finally wore a monitor for a week that measured when I was asleep, and we found out that I have a circadian rhythm disturbance.  My case is that I have a 26 hour circadian cycle, so if left to my own devices I would fall asleep 2 hours later one night than the night before.

 

I used to take Seroquel and Klonopin, and that helped a lot.  I had to practice good sleep hygiene, but more often than not I got a good nights sleep.  I'm also on SSDI, so I don't work, which in one way helps because I don't panic about the sleep I'm not getting if I'm having a bad nights sleep because I don't have to be up at a certain time. I am now on Clozaril which is sedating too, so I no longer have to also take Seroquel and Klonopin.

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Thanks for the replies everybody.  

 

@ Dilemma: I feel the same way you do about sleep studies and am coincidentally about to do my 4th one as well.  My first one did show sleep apnea but I also had huge tonsils at the time.  A tonsillectomy seemed to get rid of it because the second and third sleep studies didn't show any apnea.  After my third one, they claimed that my brain wave patterns "mimicked" PTSD (whatever that means) but nothing ever came out of it.  Seroquel doesn't seem to work for me -- I just started it a couple of nights ago and still don't sleep.  It does make me feel pretty drugged though and I did some reading about it last night where it's reported that low dosages are the most conducive to sedation and sleep.  I was prescribed 200 mgs but was given the option of splitting them in half.  I might try to do just 100 tonight and see if that makes any difference. 

 

This is really maddening and frustrating to be honest.  The thing I hate the most about it is being unable to think and process information, being unable to focus, concentrate, and retain information, and having a memory that is completely shot.  I feel like a 90 year old with alzheimer's trapped in a 36 year old body sometimes.  It sucks.

 

Does anybody know if maybe the Seroquel just takes a little bit of time to work or if the 200mg dosage is too high for the sedating benefit?  Thanks -- hope you're all having a great week. :) 

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Sylvan,

 

In order to interact with the rest of the world, you really have to do things during the day.  I don't want to sleep the day away, and I don't really get going until noon anyway.

 

Sleepless Night,

 

I was on Seroquel at night up until about 6 months ago, and what my pdoc did was start me at 25mg, and then I took it for about 5 days and I got used to it and increased it by 25mg.  We did this for as long as I needed to until it kept working past those 5 days.  I ended up at 150mg, and that worked well for me.

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You might want to consider asking your pdoc if you could reduce the amount of Seroquel. As I recall, 200 mg is about the top limit for Seroquel being used for sleep. You may very well be better off with a lower dose.

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My sleep study gave me a diagnosis: Primary Insomnia. Knowing what it's called didn't help. My dad (pdoc) enforcing sleep hygiene when I was 7, although I didn't know what it was called, I just knew there were a list of rules. But it has never worked.

 

I can't tolerate sleeping pills, and my pdoc in May (I just moved, so looking for new pdoc) told me he wouldn't use seroquel. Maybe this pdoc will be different. I'd really like to try it.

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Can someone who has only slept a handful of times over a two month time frame actually exercise without giving themselves a heart attack or stroke?  Exercise usually guarantees that I don't sleep that night but I'm mainly curious as to how far into exhaustion your body can go.  It seems counterproductive (to me) to only make yourself even more exhausted.

 

EDIT:

 

Seroquel doesn't work for me.  I've cut back to 100 mgs for the past two nights and didn't get any relief.  It actually didn't even make me feel drowsy.  

 

@ crtclms: I feel you on all points.  Primary Insomnia is the diagnosis that I've come away with for years now and it really doesn't change anything.  Sleep hygiene doesn't work for me either, hence my comments about exercise.  I still exercise when I can (like today) but I'm pretty close to collapsing towards the end of it and sometimes have to cut it short.  Exercise is also extremely detrimental to my ability to sleep and only serves to exacerbate the insomnia.  I feel a heck of a lot worse right now than if I hadn't even bothered going to the gym.  Exhausted...angry, and becoming more irritable with each sleepless night.

Edited by SleeplessKnight
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