Having finished writing this post I realized it became a little long winded but I felt that anyone with information would need the basic facts. The entire purpose of this post is to ask if anyone has any information, knows someone with some of the symptoms or knows of an institution that would be interested in studying me. As you can see, I have a lot of "symptoms" of a lot of different disorders, but not enough to be diagnosed with any particular one. Please contact me at knightmare@a-o.com if you have any comments.
My symptoms include (but are not limited to):
Very *vivid* severe nightmares every night
Waking up extremely hungry
Aching joints upon waking
Sleepwalking
Close to impossible to wake
Can fall asleep and start dreaming in less than a minute
Have "flashes" of images and sounds upon going to bed
Restless legs
Terror of sleeping
Night terrors
Fibromyalgia (???)
Now that the list is complete (sort of) I suppose that I should tell you about me when I am awake :) I had a very traumatic childhood with my parents fighting (gun fights, physical fights, car chases...), have been in counseling since the age of 15 but have never been diagnosed with any type of mental disorder. I have had 4 sleep studies (including 2 MSLT studies), an MRI, and numerous blood & DNA testing and everything has turned up nothing abnormal. I was originally diagnosed with narcolepsy and parasomnias but the narcolepsy was later retracted. I was prescribed Lorazepam with no effect on my nightmares, but I continue to take it because it does help my hands not to hurt as badly.
Dr. Dennis L. Hill M.D. did my first sleep test and MSLT. He is the Medical Director of the Sleep Medicine Centers, Inc of Park Ridge Hospital, Diplomate American Board of Sleep Medicine, Diplomate American of Psychiatry and Neurology.
According to my first sleep study with Dr. Dennis Hill:
Impression:
Axis I
Recurrent hypersonmnia 780,54-2 consider monosymptomatic Kleine-Levin Syndrome
Rule out Narcolepsy 347
Rule out Obstructive Sleep Apnea Syndrome 780,53-0
Rule out periodic limb movements in sleep 780,52-4,5
Axis II
Polysomnography
Multiple Sleep Latency Test
Axis III
History of chronic depression with multiple hospitalizations for suicidal-ideation
Tonsillar hypertrohpy
Candidate for actigraphy?
I was prescribed
Anafrinil 25mg in Jan. 96
Cylert ??mg in Feb 96
Clonazepam .5mg in Sept 96 increased to 2mg
Methylphenidate in Oct 96
Trazodone 50mg in Dec 96 increased to 150 mg
Methylphanidate 10mg in Dec 96
Imipramine 25mg in Oct 96
Melatonin 3mg in Feb 97
I was never on any of the medication above for more than two weeks because of financial problems.
I am currently seeing Maria C Sam of Wake Forest University (Bowman Gray) but have not had contact with her in three months.
Maria C. Sam, M.D.
Epilepsy/EEG, General Neurology, Sleep Disorders
M.D.: 1989, Ponce School of Medicine
Residency: 1990-93, West Virginia University
Fellowship: 1993-95, Mayo Clinic
I am 32 years old, in good health. I am a smoker of 1 pack a day (ultra lights (as if that helps :)), I have an occasional glass of wine with evening meals but have never had a problem with alcohol. I do not have cataplexy or sleep apnea. The only test now available to me is an ambulatory EEG and no one in my region has the equipment to do that kind of testing. I have never had any type of injury to the head, no mind altering drugs (I am very *anti* drug and would like to find treatment that is natural or at least non-addictive) and I have never experienced any type of trauma (molestation, child abuse...).
The only solutions that I have been able to come up with on my own are either: 1)I have a combination of several disorders on top of the childhood trauma that I witnessed or 2) Chemical imbalances that have affected my sleep and my sleep (or lack thereof) has altered my brain or neurological pathways or possibly raised or lowered other chemicals (seritonin, melatonin...)
The nightmares are so realistic and vivid that it is almost impossible to tell that I am dreaming. People tell me that I should try lucid dreaming but I rarely can because of the realism of the dreams. I have nightmares *every* night and am told that I should only go through 3-5 REM cycles but I dream almost immediately after falling asleep and can wake up remembering dozens of dreams that occurred throughout the night (even if my "night" was only two hours). My nightmares are varied in themes but with the common factor of feeling helpless (Most nightmares are of feeling helpless to change the situation though). The majority of my dreams all have realistic characters, and complex plots. I have been known to sleepwalk, swim, drive... I have some of the symptoms of DSPS (i.e. sleep better from 3 am to noon) but none of the other symptoms. I have no problems going to sleep, but the shear terror of the thought of sleeping is what keeps me awake. As I fall asleep I have the parasomnias with my thinking that some horrible evil force or person is in the room or the house. I generally became paralyzed with fear (sleep paralysis???). If I can finally move, I get out of bed immediately and do not try sleep again for hours. When I fall asleep, I enter what my sleep doctor described as a "mini-coma" and it is almost impossible to wake me up. I have slept through a tornado touchdown 3 miles away and two lightning strikes near my home. The only way that I survived any of these is that my wife had to almost physically drag me out of bed and down the stairs. When I finally wake up, (usually screaming 2-3 times a week) I immediately get out of bed. I have never been known to wake up and feel so sleepy that I go back to sleep. When I realize that I am awake I get up regardless of how many hours I slept.
I know that some of my "symptoms" are learned behavior and that I could go back to sleep if I wanted to or that I know that I am going to have nightmares any way so why not just go to bed at a reasonable time. But as anyone knows that has had these episodes, they are so horrifying that it takes a considerable amount of willpower to force myself to go to sleep. I have tried melatonin to try to regulate my sleep schedule but I only lasted three days before I stopped taking it because I was so afraid to go to sleep. I practice relaxation as I am going to sleep, I try to think positive and go to bed with the attitude that I will sleep well. I try not to think about going to bed, I generally turn off lights, lock doors, ect. hours before I actually go to bed so that all I have to do is get in the bed and try to tell myself that I am just laying down for a minute. But alas, none of these things have ever helped but I try anyway.
For these and other reasons I am terrified of sleeping although I know that the longer I stay up and the more tired I become, the more likely it is that I will have nightmares (Catch-22). So I am left not being able to work, attend family or social functions, or even spend time with my children because I am either sleeping 18 hours or I have been up for days (the longest has been 9 days) and I am so sleep deprived that I cannot function.
I am so desperate I am ready to scream. I have been going through bouts of depression because of feelings of worthless and that I cannot provide for my family. I am willing to be studied, poked, prodded, examined.... anything if someone can just help me sleep and lead some kind of normal life. I am currently on NC Medicaid :( and am in the process of a disability claim :(:( so I do not have the funds to pay for elaborate studies or exams but am willing to travel as far as I have too (within reason :) to get help. And maybe the research I participate in can help others. I would like to thank you for reading this far and to thank anyone with information, suggestions or feedback in advance.
Thank you
Rob Owen
knightmare@a-o.com
=
Sorry about the late reply. I had hoped one of the sleep disorders specialists would pick this up, but none has.
What you describe is extraordinarily complex. My first thought was narcolepsy, but that has been discarded by experts, and my working knowledge of sleep disorders is not very sophisticated.
I guess the only thing I can suggest is that you visit the sleep disorders center here for another opinion. They may or may not be able to contribute another idea. I don't know about your own sleep center and Dr Sam - could be excellent, and they may have gotten as far as anyone else could have: just don't know.
Try calling 800 223-2273, ext 4-5559 and ask for neurology appointments if you are interested. Good luck. CCF MD mdf
