Narcolepsy Support Group
A sleep disorder (somnipathy) is a disorder in the sleep patterns of a person or animal. Some sleep disorders can interfere with mental and emotional function. If you are having trouble falling asleep or having some other kind of sleep disturbance, this group is for you.
Hi =)
I finally am seeking a diagnosis for my sleep problems.. primary doc was thinking narcolepsy...internet searches upon N seem, eerily familiar, and yet the sleep specialist decided I have either restless leg syndrome or narcolepsy. (...despite the fact that i don't move much at all in my sleep nor complain of leg or limb sensations...nor have any problems sleeping, at all).
He gave me Mirapex to try for 2+ months, and if it doesn't work to fix the mysterious RLS..then he will order the sleep study, night and daytime one...
I'm on Desipramine, and have been for a year for sleep.
I resisted the urg to try Desipramine forever (moms been on it for 16yrs for the same sleep issues), until i started nursing school and knew i would have to function on less than my usual 10-16 hours of sleep... and it has been a life saver. Its not great, but i can actually wake up now when i need to (no more missed classes or appointments cuz i could not function enough to get out of bed). I still sleep the occasional 12 hrs but not as frequently.. and i wake up on my own after 9-10hrs now.
symptoms:
i fell asleep a lot when i didn't want to (I RARELY take a nap intentionally, but do still get irresistible urges to pass out when i don't want to (movies, TV, studying, reading, driving, bathtub, etc) and sleep anywhere from 2min to 2 hours..and almost always dream instantaneously. The Desipramine helps a lot with the freq of these, but still happens a couple times a wk.
Since I was a teen, i've always been excessively tired during the day, and always needed an insane amount of sleep to even sort of function. Never ever felt rested upon waking.. typically felt worse upon waking than i did when i went to bed! Oh and i can sleep through ANYTHING. its like, dead to the world sleep...
(the Desipramine lightens it considerably, phone calls and knocks on the door wake me up now.... my understanding is the drug decreases REM sleep...)
I don't have sleep paralysis, and i don't think i've had any normal hallucinations (he asked). I do however, when falling asleep either intentionally or not, have these weird KIND of dreams... where i end up being paralyzed in the dream, and keep falling down alot. they are OOBER realistic and eery feeling... very veyr real and kinda frightening feeling.
happens a few times till finally i fall asleep into a normal dream or wake up from the weird nap.
I know i'm not text book.. but from what i've read, N sounds like the closest fit... Also read that cataplexy can develop later in life (my mom developed what sounds like it, about 6 yrs ago...) but the doc told me that it usually is the first thing to happen.... same with the paralysis and hallucinations.
Is there anything i should say or stress in particular with the doc? To get him off the RLS kick.... ? Or should i just suck it up and wait until my next 2+ month appt and beg for the N sleep study..? (which he said even if i dream at onset, it could be for lots of different reasons...??) - he kept saying how N is very very rare and how itd be highly unlikely that i have it... but that i definitely have a sleep disorder.
Oh and do my specific symptoms sound like anyone out there? I've read through a bit of this board and some of you i can relate to...
sorry this is sooo long!!
Thanks!
S
I finally am seeking a diagnosis for my sleep problems.. primary doc was thinking narcolepsy...internet searches upon N seem, eerily familiar, and yet the sleep specialist decided I have either restless leg syndrome or narcolepsy. (...despite the fact that i don't move much at all in my sleep nor complain of leg or limb sensations...nor have any problems sleeping, at all).
He gave me Mirapex to try for 2+ months, and if it doesn't work to fix the mysterious RLS..then he will order the sleep study, night and daytime one...
I'm on Desipramine, and have been for a year for sleep.
I resisted the urg to try Desipramine forever (moms been on it for 16yrs for the same sleep issues), until i started nursing school and knew i would have to function on less than my usual 10-16 hours of sleep... and it has been a life saver. Its not great, but i can actually wake up now when i need to (no more missed classes or appointments cuz i could not function enough to get out of bed). I still sleep the occasional 12 hrs but not as frequently.. and i wake up on my own after 9-10hrs now.
symptoms:
i fell asleep a lot when i didn't want to (I RARELY take a nap intentionally, but do still get irresistible urges to pass out when i don't want to (movies, TV, studying, reading, driving, bathtub, etc) and sleep anywhere from 2min to 2 hours..and almost always dream instantaneously. The Desipramine helps a lot with the freq of these, but still happens a couple times a wk.
Since I was a teen, i've always been excessively tired during the day, and always needed an insane amount of sleep to even sort of function. Never ever felt rested upon waking.. typically felt worse upon waking than i did when i went to bed! Oh and i can sleep through ANYTHING. its like, dead to the world sleep...
(the Desipramine lightens it considerably, phone calls and knocks on the door wake me up now.... my understanding is the drug decreases REM sleep...)
I don't have sleep paralysis, and i don't think i've had any normal hallucinations (he asked). I do however, when falling asleep either intentionally or not, have these weird KIND of dreams... where i end up being paralyzed in the dream, and keep falling down alot. they are OOBER realistic and eery feeling... very veyr real and kinda frightening feeling.
happens a few times till finally i fall asleep into a normal dream or wake up from the weird nap.
I know i'm not text book.. but from what i've read, N sounds like the closest fit... Also read that cataplexy can develop later in life (my mom developed what sounds like it, about 6 yrs ago...) but the doc told me that it usually is the first thing to happen.... same with the paralysis and hallucinations.
Is there anything i should say or stress in particular with the doc? To get him off the RLS kick.... ? Or should i just suck it up and wait until my next 2+ month appt and beg for the N sleep study..? (which he said even if i dream at onset, it could be for lots of different reasons...??) - he kept saying how N is very very rare and how itd be highly unlikely that i have it... but that i definitely have a sleep disorder.
Oh and do my specific symptoms sound like anyone out there? I've read through a bit of this board and some of you i can relate to...
sorry this is sooo long!!
Thanks!
S
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My paralysis didn't start til many years later. The sleep study showed that I only got 7 mins of deep sleep a night.
I have been on xyrem for 7 months and it is helping, but it took 3 tries and some getting use to. Hope this helps you
I never in a million years would have thought that I had RLS - but when you have a sleep study done they hook you up to machines that monitor your legs movements - my dr came in the next morning and told me I had over 80 movements an hour!
I too felt like I was sleeping well but spontaneous arousal's are a symptom of N - this is when your body is asleep but your brain suddenly becomes active - like if the dog barks outside or a car goes by - it just so happens the night of my test a big storm rolled through - I had no memory of the storm the next morning but the Dr. told me the arousal's became too many to count.
I don't spontaneously fall asleep - however I am extremely tired all day long unless I use the help of stimulants to keep me alert during the day and medication to help me sleep at night.
When I was DX'ed I did not have cataplexy - you do not have to have C to have N - (MAKE'S ME CRAZY WHEN DR.S SAY THAT!!!!!) However a year later - I am having some heavy limbs, weakness and droopy facial muscle's - which is considered mild C.
Your dreams are a very good indication as well - you may in fact be having sleep paralysis and Hal - at the same time causing you to think your dreaming - of course this is just my opinion -
With my N sometimes I have trouble with being able to tell if something that happened was real or if I dreamed it.
Another deciding factor - how's your memory? - Terrible I am sure
Part of the issue is you saw your primary Dr. It is my understanding that medical students get about 10 min of study on sleep disorders. You need to see a specialist. If you have to get a referral for a sleep specialist from that Dr. I would def do so or if you don't go straight to a clinic!
This is just my opinion of course, but it sounds like it is bad enough that more tests need to be done.
Also N is hereditary, so it is possible if you have it your mom does too.
of us has a different combinations of symptoms,
I was told the only job I could do was mattress testing, After years of therapy, uppers and downers, I no longer work, so I take nothing, I love it, I went to sleep at age 12, so I have a hard time playing mental games, but I use sleep to problem solve. I would rather be smarter and a sleepyhead, than alert and dumb.Tomorrow is playday,vonnyzzz, you are lucky, everything wake me up, I seldom sleep longer than 2 to 3 hours. Hang in there .jzldya group hug to you
The idea that i might be having sleep paraylsys and hallucinations at the same time intrigues me.. would explain the really vivid dreams and inability to move...When i tried to tell the doc about it, he kinda blew me off..which was annoying.
though today i had my first "true" sleep paralysis experience... I took a nap (i usually avoid them if i can and only pass out when i cant fight it anymore) and as i was falling asleep I was kinda in a haze but then i couldn't move at all and i started panicking tryin to move, i was on my stomach so i sorta felt crushed a bit. finally snapped out of it and my heart was racing at that point. after calming down from that, i had a few more dreams before my alarm went off (set for 30min from when i laid down).
Oh and to clarify, this was an appt with the sleep specialist. The primary doc who i sought a refill on my desipramine was thinking N...the sleep specialist was thinking RLS due to my fidgeting in the office and the rarity of N. Though he did say he wants a sleep study done to rule out N (...or possibly show that i do have it...). i'm spose to try the Mirapex for 2 months, then he'll order the sleep study if i'm not 'magically better.'
Mirapex makes me sleep MORE and makes me even more excessively tired during the day... (couldn't stay awake more than hr to save my life). i decided i do not like the drug lol as if i need anything to make me sleep MORE than i already do! hmph.. no magic pill cure there like he seemed to think itd be.. (mirapex was his way to theoretically prove i have RLS and not N...)
I don't think i'm going to keep taking the mirapex for the entire 2 months. Its not helping and its gunna make it that much harder to stay awake when I study for school (just started my 2nd (and last!) year of nursing school today!).
thanks so much for all your input! I really appreciate it all and the personal stories/experiences!