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Narcolepsy


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#1 Ruby Gloom

Posted 19 September 2012 - 06:40 AM

I've recently been diagnosed with Narcolepsy and am starting to the process of finding a medication that will work for me.

My question is, has anyone had experience with the Narcoleptic medications, or alternative treatments? Or is there anyone in EB land that has Narcolepsy and would like to share? While it's been an almost life long issue for me, I've only been diagnosed in the last few months.

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#2 Ruby Gloom

Posted 09 December 2012 - 06:50 AM

I just wanted to pop back in to let people know (but obviously not to offer medical advice!) that my doctor and I have been able to find a medication that really works but wasn't expected to!

The sleep specialist tried me on a stimulant but I really didn't react to it well and it didn't help with my tiredness anyway.

I started to question the logic behind giving stimulants during the day (considering the associated risks and side effects) and not addressing the poor sleep structure at night.

Long story short, my psychiatrist (who I was referred back to to monitor the stimulant) suggested I try something called Valdoxan. She gave it to my initially to help with the anxiety that the stimulant had caused but she suspected it would help me sleep at night as well with no hangover effect. It interacts with your body's own natural melatonin supply to reset your circadian rhythm. It basically gives your body an extra dose of melatonin to tell it it's time to go to sleep.

The thing about it that is thought to be of most help to me (and would be to people with Narc.) is that it is THOUGHT to supply you with Short Wave Sleep which is a part of a person's sleep architecture that someone with Narc. doesn't have. It's this stage of sleep that is restorative. It's a newish medication (2-3 years?) and is therefore a higher cost associated with it (but PHI can help).

Anyway I just wanted to put it out there in case there are other people struggling to find something that helps.




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