What is wrong with me?

[kenneltech]

I don't even know where to begin.  I've had sleep problems all my life, and have had many sleep studies done with no results.  Oh yes, one time, years ago, they said I had nocturnal myoclonis (sp?), but then, I had two more sleep studies done over the years, and they said I didn't have that.

I have not been able to sleep since the age of 12, and I am now 57.  I can't GO to sleep, it scares me to death, the feeling of "drifting off" feels like I'm dying.  Also, my sleep patterns over the years have changed so drastically that I don't think doctors can keep up!

For a long time, I slept at night WITH medications.  Then, I went through a period where I slept like a baby with NO medications, and I really felt good!!!  That didn't last long, about a year.

Then, I would switch and go through a period where I couldn't sleep at night at all, even with meds, but would fall asleep around 6 or 7 am, and sleep until about 11 am.  I started falling asleep at the wheel of the car, (which I have NEVER done), and that really scared me, but if I went to bed, I was wide awake again,  and on, and on, and on!

Then, finally, I went through a period where I would get up (after a drug induced restless sleep) and immediately fall asleep on the couch, couldn't stay awake for anything, and slept about 2 hours.  

Okay, so NOW, I can't sleep again at night (I do NOT dream at all), even with meds.  I am awake until about 7 am, then I fall asleep until about 11 or 11:30 am.  I DON'T sleep on the couch, I can't any longer, but I am groggy and CAN fall asleep at the wheel, so I have to be very careful.

I have always taken meds for sleep, and they barely even work anymore, they have to keep switching them.  I do have RLS now, but this is a new problem, the sleep disturbances have been going on for years.

Sometimes, I will hallucinate, I "almost" get to sleep, when I see a long table with a white tablecloth on it and men sitting all around it, (this floats in the air, and I cannot move except to follow it with my eyes), and I am "serving" them, like glasses and dishes, etc.  I am going around this table and they are laughing, and the faster I go, the harder they laugh, until each face comes out close to me so I can see their grotesque laughing faces.  It can last up to 5 minutes, and I am not asleep, I am in this surreal state.

I do have severe complex PTSD, and I'm being treated with EMDR treatments that are working really well.  Doctors that have tried to help me with my lifelong sleep problems are now telling me that it's the PTSD (have had it for years), and once the EMDR treatments work, I should be fine.  I THINK IT'S A COP-OUT because they just don't know.

Also, I can have dreams (sometimes, because I usually don't dream) where they are so horrific that I will jolt awake and actually be afraid for WEEKS that it's going to come true.  And I have awakened on a few occassions standing up scratching the walls like I'm trying to get out.

I have had CAT scans and MRI's of my head and nothing comes up.  Not to mention, the umpteen sleep studies done.  Do you think it's just the PTSD, because my sleep patterns just changed again, and I AM receiving EMDR treatments.

Thanks,   desperate!!!

[TheCuriosity]

Kennel,

I don't really know what to say, except that while we have all these advances in healthcare, it is still full of a lot of trial and error by people. The HPs (Health Practitioners) that are helping you may not know 100%, but that applies to most cases until after the symptom is successfully treated. So be patient. I know it is frustrating, but they are trying their best. Worst case scenario is if this current treatment doesn't help, then they are just one step closer to finding out the real cause.

Now what might help in finding some more answers would be some clarifications to your post above.Like.. how much time passes between the different cycles you mentioned above? When you hallucinate.. are your eyes closed? (ie. is it Hypnagogia? - http://en.wikipedia.org/wiki/Hypnagogic_hallucinations). Also, have you ever had a reasonable time frame (say a minimum of a week) where you were able to be asleep and awake when you wanted to be, not when society dictates it?

(For those that don't know, EMDR info can be found here: http://en.wikipedia.org/wiki/Eye_movement_desensitization_and_reprocessing)

[kenneltech]

Sorry my post was so fragmented, I was trying to remember everything to get it all in.  My eyes are wide open when I hallucinate, I am actually awake, but can't move, it's very surreal.  The different cycles go anywhere from a few weeks to several months, there is no permanent cycle.  Now, I am starting to get tired around 12pm, and fall asleep around 3am to about 9am.  Don't know when it will change.

There was one point in my life that I actually slept normally (without drugs) for about a year.  I was probably in my late 20's to early 30's, single, raising my daughter, working.  Nothing peculiar about that time, it just sort of happened that I could sleep.

I have not slept without massive drugs since I was 12 years old.  So, that 1 year time period was amazing to me, I actually was not afraid to fall asleep, that seems to be my problem

[TheCuriosity]

http://www-cs-students.stanford.edu/~jl/Essays/states.html Check this site out. Scroll to approximately the middle of the page (2nd paragraph after the first chart; starts with "Frist example") Is it something like this?

I asked about the unforced sleep because I was curious if you found yourself naturally sleeping at a different time. I recently learned about different sleep cycle disorders; one in particular has it that one's sleep cycle 'rotates" because their body doesn't run on the standard 24 hour clock.