Ask Us Anything: With Gabrielle, Iris, Tatiana, and Kerly
Hey, Narcolepsy community! You've read their amazing articles, you've connected with them through the comments, and now here's your chance to ask them questions! From Tuesday, March 14 - Friday, March 17, four of our Narcolepsy Community Health Leaders, Gabrielle, Iris, Tatiana, and Kerly, will answer your questions in this forum thread. Submit your questions in advance and be sure to check back periodically for answers.
As a friendly reminder, they *cannot* give any medical advice and all questions/comments must abide by our Community Rules (https://narcolepsy.sleep-disorders.net/community-rules). Check out our Community Health Leader bios here: https://narcolepsy.sleep-disorders.net/community-advocates
Why are insurance companies allowed to not cover what a Dr says is medical necessity? (from Instagram)
It's a great question, unfortunately health insurance can be difficult to navigate especially when it comes to rare diseases. It's so not okay! Fortunately many narcolepsy drug companies offer patient copay assistance programs, such as Wakix (for example). I was able to utilize their patient copay assistance program myself, called Wakix 4 U, in the past to get access to my medication. Thanks for your question, and good luck to you! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Is it normal for narcolepsy to get worse over time? (from Instagram)
In the five years since I've been diagnosed, my symptoms have varied. There were times when I could barely make it through the day without napping twice, even with the medication I was taking. However, in recent years, I've been managing my symptoms pretty well. Personally, I do worry that as I get older my symptoms might get worse. However, I'm taking things one day at a time and keeping in close contact with my doctor. I find that my symptoms increase when I am overworking myself or am stressed. I recently had a bout of shingles and found that my narcolepsy symptoms increased during the sickness and the long recovery period. Some days are better than others, and my symptom severity can be dependent on external factors, even the weather (too many overcast days messes up my sleep cycle!) Overall it seems to vary, for me. Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)
Can you share any resources regarding having narcolepsy and ADHD, or narco and RA? (from Instagram)
*can’t balance. autocorrect. 
What a great idea,
. Thanks again for some valuable advice. Best wishes. - Lori (Team Member)
Can we take melatonin for a long period? (from Instagram)
I've been taking melatonin nightly for about a month now and as far as I've been told by doctors, it's recommended to take for about 2-3 months regularly and then take a break and see if your sleep pattern had improved. I would definitely advise you to ask your doctor though just to be safe! Take care, Iris (Team member) I have taken melatonin in the past for several months at a time. Personally, it didn't do much to help me, but I have heard that it helps other people fall asleep at night. I would suggest discussing this topic with your doctor to see what would be best for you!
