Hi All. My name in Andi and I live in Boise, Idaho. I'm interested in starting a support group in Boise, Idaho and would like to find out how many folks there are out there with Narcolepsy living the Boise Metro Area. Please respond to this posting and let me know you are out there. Feel free to include any information about yourself.
I was recently diagnosed in 10/2011. I was informed by the nurse at my sleep specialist's office that there are only 10 N patients there and currently no support group of any kind in the area. I thought it might be nice to be able to get to know each other and have someone to share our experiences with on a more intimate level. I don't know what experiences you have had with your doctors but let me give you an example of why I'd like to have more input from people with the same diagnosis.
I've been on Nugivil 250mg for about 5 weeks and have tried Provigil in the past with no effect. The Nuvigil helped for a few days and its helpful occasionally but about 3 days out of the week I still fall asleep on it about a hour after I take it uncontrollably and sleep the whole day. It does nothing for me. On the days I am awake, I feel a little foggy. I told my doc this (actually his NP) and she said that she's never heard that from any of her patients. She refused to make any adjustments. Now, I'm thinking "You only have 10 N patients so how can you possibly base any kind of good assessment of a medication's typical side effects or effectiveness on the reports of only 10 patients." Honestly, what kind of life am I supposed to have when the medication does nothing for me 3 days out of the week and puts me in a fog the rest of the time.
So, I'm sure those of you out there have similar stories and if we had the backing of each other and could bounce ideas of each other, we could be of great support to each other and help each other get better and more effective treatment from the limited medical community we have here as we are fairly isolated when it comes to this condition.
Thanks all. I look forward to seeing how many of us there are here in Boise.
Looking For N In Boise, Idaho
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