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-   -   Idiopathic Hypersomnolence (CNS) (https://www.neurotalk.org/sleep-apnea-and-sleep-disorders/26523-idiopathic-hypersomnolence-cns.html)

Sleepy24-7 08-22-2012 04:58 PM

The insurance companies are getting ridiculous!!! Nuvigil works very well for me but my current insurance has denied it twice stating that because I dont have narcolepsy, sleep apnea or wear an apparatus at night they wont cover it...... I even sent research on it, which is now being called primary hypersomnolence but they denied it again...... They did approve Ritalin which raises my already high blood pressure but they didn't care to hear about that....

Dr. Smith 08-24-2012 01:15 AM

Quote:

Originally Posted by Sleepy24-7 (Post 908002)
I am curious as to whether any of you had any strange flu like illnesses before you started having these issues...... I did and have never been the same....

Hi Sleepy, Welcome.

I do not have hypersomnolence, however I have had flus & viruses that have been the catalyst for other conditions (chronic migraine, IBS), and I have met others who have likewise had seemingly simple viruses after which they have never been the same. The migraine complex turned out to be one that is documented as being brought on by reactivation of Epstein-Barr.

Little consolation, I know, but having experienced it firsthand, I do believe you.

Doc

rachel torrington 06-17-2013 08:36 PM

I was diagnosed with idiopathic hypersomnolence when I was in high school. It was horrible; I missed out on so much! I was prescribed Dexamphetamine just to be able to live a ‘normal’ life. I hated taking this as I believed it made me depressed so I stopped taking it.
Later on I started ‘self medicating’ will illegal drugs. It was the only way I was able to work and study. This had consequences though and eventually stopped. I tried so hard to do what everyone else does without any form of help. I would be late for everything, sleep during my morning tea and lunch break, sleep when I got home. My house was a disaster as I could barely keep on top of it.

I started living on energy drinks causing me to gain so much weight. My body went into starvation mode as I slept through most meals. I could barely look after my children. They were late to school every day. My husband has never understood and just believes I’m lazy. I tried seeing doctors explaining to them how tired I was and asking to go back on some sort of medication again. I told them what I was diagnosed with and none would listen. Everyone put it down to stress, depression, lack of exercise, weight, snoring you name it!

Due to the amount of weight I gained I was eventually placed on Duromine. I was told one of the side effects for not being able to sleep. Well I didn’t have this side effect; it did however give me just enough energy to live a ‘normal’ life. For the first time in about 10 years or more I was able to do basic household chores, look after the children, have a restful night sleep (I even had dreams), work. I was so happy and with it! Unfortunately Duromine is only meant as a short term weight loss drug. Now I’m back to my crap life again. I’m yet to find a doctor willing to help. I am new to the area I currently live in hopefully I will find help here.

Darlene 06-18-2013 01:40 AM

Nice to meet you!!
 
rachel,

:Wave-Hello: It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you. :smileypray:


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