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Hypersomnia
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grandmakay41 posted:
I have been diagnosed with hypersomnia. For about 18 months I was sleeping 18-20 hours a day. I kept thinking I would come out of it because I have Chronic Fatigue Syndrome plus Fibromyalgia and was accustomed to needing 12 hours of sleep if I did too much. I finally went to an endocrinologist to see if that system had gone haywire. After doing all the tests and coming up clean she made the diagnosis. My PCP prescribed Ritalin which has worked well for 2 years. I just changed insurance companies and they won't cover it. They have me taking Provigil which doesn't work. I can get the generic Ritalin but it is costing me $60 a month, which I can't afford. I just got my life back 2 years ago after being sidelined for 10 years by the CFS & Fibro. Does anyone have any suggestions?
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donnajune2000 responded:
hi, I'm Donna from Winterville,ga. I really don't know what to tell you except that I am on Medicaid and every single month there are certain prescriptions there are narcotics and I cannot call them in earlier they won't let me. So..I have to call the pharmacist and the pharcist has to fax my doctor who is slower than a snail, and that dummy dr. has to Medicaid and tell them that I have to have this medicine..Once that's done I'm good for a month, but my doctor sometimes takes five or six days..I hardly sleep ever. I have Lupus,Fibromyalgia,Restless leg and Body Syndrome, sleep apnea,and a lot more..I'm in pain all the time and I can't sleep sometimes I think I'm just gonna go psycho...so I can sure understand where your coming from..Godbless U and URS..Donna in Georgia
 
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nanadianah responded:
Grandmakay41- I also suffer from what you're describing, but have a slew of other medical problems. I have periods where I sleep for 24-48 hours straight, not even to go to the restroom. I'm now disabled and no longer can work. When I was working, it was graveyard shift from 7 pm to 9am. I was on Provigil as well, there at the end of my career my doctor had to increase the dose. Ritalin has too many horrible side effects, such as seizures. My son has ADHD and was on Ritalin until he was diagnosed with a seizure disorder. The only thing seizure patient's can take is Provigil.
I'm very thin and frail so I didn't think it was possible to have a sleep disorder, but after waking my husband up snoring several times, I had a sleep study and have a sleep disorder and now using CPAP. If you're on any narcotic pain medication that could be the cause of a sleep disorder. You should talk to your doctor about a sleep study and if you do fine on that, there's a daytime sleep study to check for narcolepsy. Before changing your meds, have your doctor check those things. Getting restorative sleep will definitely make you feel a 100% different if indeed you do have a sleep disorder that's preventing you from getting restful sleep!
Good Luck!


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