not able to sleep associated with CNS damage- need help

[a1foxes]

Ive been tested out the whazoo by doctors trying to figure out why I cant sleep without
specific medication. 6 yrs ago I had meningitis, accompanied by coma and septic shock. I
suffered some permanent hearing loss, nerve damage to limbs and digits, and what seems
to be progressive chronic insomnia(meaning its gotten worse with time). I am fully dependant
on medication to sleep, and even after going without medication for almost a month, I am not
able to sleep more than an hour or two a day. Pshychiatrists and psychologists have both
determined I am not suffering from any mental illness, and medications associated with these
types of disorders have been completely ineffective. Even after hospitalization for a week, where
everything was controlled, I was not able to sleep until given specific medication. Narcotics like
morphine, phentenol, codeine,etc, were given in the expectation that it would make me sleep,
they too were completely ineffective.  Subsequent sleep studies have found no typical sleep
problem causes like apnea, restless legs and so forth.  Side effects of my chronic insomnia
include lack of energy, memory retention problems, inability to focus for long periods of time,
irratibility and mood problems. Its one thing to have it happen once and a while, its another to
go through it for years. The medication I use in Canada is zopiclone, but it only stays in the
system for 5 hours, and for me its pretty much ineffective once I get to the 4 hour mark. Also,
its effectiveness even for that long is reduced after regular daily useage, leading to less and
less sleep, or using more and more medication- which also leads to tolerance. I have tried
Lunesta from the US, pretty much the same stuff but supposedly it stays in the sytem almost
twice as long, however tolerance issues also develop with it. No one in Canada has been able
to formulate a treatment, in fact, Ive been told that Ill likely have to live with it and medication
for the rest of my life. I am hoping to find some alternatives, suggestions, anything. I know my
situation is a  bit unique, most insomnia results from psychological problems and is treated
accordingly, my problems are not, so no one knows how to deal with it. Actually, it seems no
one WANTS to deal with it.

[scarlet37]

Although your sleep studies have ruled out the usual stuff have you seen the graph copies and the exact results for yourself to see weather or not you actually reach stage 3 and 4 sleep?

I know for myself I have narcolepsy I go into stage 1 for a few minutes and then right into REM. Without having stage 3 & 4 my body was unable to rest and causing me severe symptoms from complete sleep deprivation.

I am currently taking Xyrem and like your medication it only works for about 3-4 hrs but it is having an impact and must be giving me proper sleep stages because my symptoms are slowly disappearing.

I hope you find the answer you are looking for sooner rather than later. Please keep posting with your progress.

Best Wishes~

[KatEyes]

Yes, your situation is unique, and I'd venture to say that no one wants to deal with it because they don't know what to do. I'm guessing your insomnia began after your bout with meningitis?

I have sleep disorders that have for years severely compromised my sleep, and treatments help only temporarily and to a limited degree.  I have finally resigned myself to using whatever meds I must to get some sleep. I suffered many years before giving in to this approach, although I'm always inquiring about new advances in the field of sleep. In my worst imaginations I can see myself begging to be anesthesized on a regular basis just to keep my sanity. At least I know the 'whys' of my situation. Your situation reminds me that others are dealing with worse than I in the area of sleep.

Can you research if there are any studies at any of the major neurological research institutes that you may be a candidate for? I don't know who you're seeing, and maybe they are the best of the best. But seems to me a group of doctors with a wide scope of experience beyond the garden variety insomnia is what you need. Can't offer any help, but you certainly have my well wishes.