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Narcolepsy Or Hypersomnia


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#1 malendajane

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Posted 18 June 2013 - 11:02 AM

Not sure if I am posting this in the right spot but here goes nothing. My name is Malenda and I am 28 years old. Since I was twelve I have always had to take many naps during the day. I knew I slept more then most people but wasn't sure why. As I got older it has gotten worse. I wake up after 8-10 hours of sleep and feel as though I never slept. Four years ago I was diagnosed with Hypothyroidism, vitamin D and B12 deficiency. All of them are controlled with medication. But I still felt tired all the time. My doctor suggested I might be depressed because I was tired. So not really knowing much and being wanting a solution I gave it a try. I tried just about all the different kinds of medication for depression and none of them worked. In fact they made me feel depressed...not just tired. 

 

Well finally I had enough and said no more medication. My doctor wanted me to take them and I refused. Just because I am tired doesn't mean I am depressed. I have no other symptoms of depression. I found another doctor who was willing to listen to me and not just think I was crazy because of my history with depression medication. She sent me to a sleep doctor who ordered a sleep study and a MSLT.

 

My sleep latency for my sleep test was prolonged at 51 min and REM latency 113 min. By the way it never takes me that long to fall asleep. The techs were so loud and I could hear everything they were saying. They were arguing about Obama Care. I told my sleep doctor who agrees this is the cause of the prolonged sleep latency. Stage 1=8.9%  Stage 2=56.1%  Stage 3= 6.4%  Stage 4=0.0%  Stage REM=13.4%. I had no apneas or hypopneas but had 35 total RERAs. I had 97 spontaneous arousals. 

 

My MSLT results were: 1.5 min  REM 6 min, 2 min no REM, 1 min no REM, 1 min No REM, 8.5 min no REM. 

 

My doctor says that based on everything he feels that I have hypersomnia. I would have to have two naps with REM to have narcolepsy and I only had one. He wanted me to take stimulants but I really do not want to. He told me to research it and come back in two weeks to see him. I am unsure of everything and I feel like this diagnosis is not really an answer. I feel like the stimulants will just be covering up the problem. Also I feel like if I could just get the deep sleep I would not be so tired. Is there any thing I could take to get more deep sleep? Will this continue to get worse or can it get better? Sorry my post is so long and rambling. 

 

 



#2 DeathRabbit

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Posted 18 June 2013 - 11:38 AM

Idiopathic Hypersomnia is a symptom really, not an illness. It means basically "You're sleepy and we have no clue why." I'd recommend getting tested for infectious causes like persistant/retrograde mononucleosis or toxoplasmosis. Next time I see my GP, I think I shall demand these tests myself, just to make sure. Although, if it is mono, there's nothing you can do. Antivirals don't work on it. But I know, for instance, my barber's daughter caught monom when she was 6. She was 13 or 14 before her EDS started to clear up.



#3 Lloydy

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Posted 09 July 2013 - 01:56 AM

I feel like the stimulants will just be covering up the problem. Also I feel like if I could just get the deep sleep I would not be so tired. Is there any thing I could take to get more deep sleep? Will this continue to get worse or can it get better? Sorry my post is so long and rambling. 

 

Welcome to the forum :)

 

One really good way to get more deep sleep is a mediciation called Xyrem that is more commonly prescribed for people with Narcolepsy with Cataplexy. Some people with Idiopathic Hypersomnia (IH) who struggle to get enough deep sleep or who have a lot of awakenings find it to be a wonder drug. It's not a stimulant but it is tightly controlled so well worth discussing with your doctor.

 

You might also want to discuss non-stimulant treatments that treat the GABA system believed to cause IH. But otherwise the only real choices are stimulants like Adderall/Ritalin/Provigil/Nuvigil :(

 

Idiopathic Hypersomnia is a symptom really, not an illness. It means basically "You're sleepy and we have no clue why." I'd recommend getting tested for infectious causes like persistant/retrograde mononucleosis or toxoplasmosis. Next time I see my GP, I think I shall demand these tests myself, just to make sure. Although, if it is mono, there's nothing you can do. Antivirals don't work on it. But I know, for instance, my barber's daughter caught monom when she was 6. She was 13 or 14 before her EDS started to clear up.

With due respect DeathRabbit - Idiopathic Hypersomnia is a neurological disorder. It is not just a "symptom". Researchers are close to have a test that can be conducted to better diagnose people with this condition but due to the complexity (testing cerebral spinal fluid), pain and cost it might be a long time before that is widely used. I personally have Idiopathic Hypersomnia and it has had an impact on every area of my life :(