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Sleep Disorders Message Board


Sleep Disorders Board Index


Hello there,
-I'm 19 and suffered a severe blow from insomnia at the age of 15, which I have been battling ever since. At the same time I developed thyroiditis, although my thyroid levels have always been perfectly normal. I also developed hayfever (but it was cleared of any connection after seeing an allergist)
-It quickly became extreme delayed sleep phase syndrome, and has since developed into something 25 and counting doctors have been unable to diagnose. My visits to various sleep doctors began two months after it started and have continued since.
-My sleep spirals around the clock (like N24, although this is not the diagnosis as I did not respond successfully to the traditional treatment), and goes through large jumps, such as being awake for more than 60 hours.
-I typically sleep 12 hours a day, although have had random intervals of sleeping more than 24 hours at a time.
-I have hypersensitivity to sunlight, almost to the point of allergy (I have been tested negative for actually having an allergy to sunlight).
-I have an extremely high tolerance for medications. I am often on the highest safe dosage of something with no affects.
-Unable to hold a job, or to get my high school education. Was partially bedbound for a year and totally bedbound (and almost totally vegetative) for a year and a half.
-For the record, most of my doctors have dumped me, in various states of impoliteness, once they ran out of options. I even ended up with one screaming at me for having a problem he could not fix.
-Currently, my thoughts are that this falls somewhere under the large umbrella of 'circadian rhythm disorder'

[B]Onto the list of medications I have tried:[/B]
Melatonin-Tried this one to death. Only found it effective at 15mg in cooperation with the sedative Clonazepam.
Doxopin-I developed a severe all body itch last spring, of unknown origin, and was put on Doxopin for it. Helped my sleep for a few weeks. The itch went away as mysteriously as it began. (Ironically, they are now intending to brand this medication for sleep)
Clonazepam-The only drug that ever helped. Allowed me to get out of bed this winter and lead something of a normal life, until now as the effects are wearing off. Have been up to the maximum 'safe dosage' of this one.
Lamotrigine-My current doctor had the idea that my problem might have a link to bipolar. Not certain whether this is working or not, as we have never tried it without being in combination with other medications.
[B]The following had no effect whatsoever:[/B]
[SIZE="1"]Lithium-Possibly proving my doctor wrong about the bipolar thing
Gabapentin
Ambien
Lunesta
Temazepam
Zoloft
Trazadone
Seroquel
Rosarum
(There may be some medications missing from this list as I was very sick for a large portion of the time)
[/SIZE]

[B]And now onto the therapies/tests I have tried:[/B]
Sleep hygiene-How hasn't? No effect. But I still try my best to stick to it even under these circumstances.
Homeopathic Medicine-No effect.
Psychological assessment-Cleared of depression, anxiety disorders etc.
Assessments by several endocrinologists, and an allergist.
Overnight sleep study-Came back completely normal.
Chronotherapy-What may have thrown me into an N24 style sleep pattern. Did not work, and made things much worse.
Light therapy-Have tried multiple light boxes. They made me extremely tense and irritable, and then very sleepy.
Darkness-Whether day or night, having a totally dark room during sleeping hours makes no difference to my shifting schedule.
Bloodwork-On everything available and relevant to test for. The only things found were grass allergies and a slight iron deficiency.

I keep a sleep diary on a 24 hour chart of the hours I sleep and wake. My doctors have all seemed to find it useful, although they have yet to actually help much. I hate to say that. They try...

I am curious to know if anyone here has input or suggestions. Ever seen a similar problem? Have a medication or therapy to recommend? Any feedback will be very much appreciated :)





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