What's the worst narcolepsy advice you've ever gotten?
Whether from friends or healthcare professionals, share some of the worst advice you've received.
The worst advice I’ve gotten over and over by people who don’t share my problems is, “Maybe, you should just go to sleep earlier.” They think then I’d be able to wake when I wanted or needed (or ten alarms go off), that I wouldn't be sleepy in the day, and that I’d be reliable in the morning. I never learned how to go to sleep earlier or wake earlier. I’ve tried all kinds of things all my life to do that, but people still say, “Maybe, you should just go to sleep earlier” as if it would take away all the disruptive symptoms. It’s like telling somebody in a wheelchair they should get up and walk. After so many decades, it’s insulting, but I try not to take it personally and realize they don’t understand because they don’t share my life experience. The irony is these people think they’re offering a really novel solution to a chronic and complex problem. They’re not doctors. Be sure your doctors really listen to you.
Yes, it’s maddening lol. I’m getting appointments with specialists (Sleep MD & Neurologist) set up again. I’ve been getting all my meds from one doctor for about 5 yrs, but she went to some MDVIP program, & I can’t afford to be on her caseload. I found a new In Network doctor and thought she could do, or would do, all my previous doctor was doing, but not all general doctors are willing to do it. I understand. I expect too much from One Doctor, probably.
I’ve seen Sleep MDs and Neurologists in the past (co-morbid migraine w/aura since I was 9 yrs old), and it was a hassle, but I know it’s probably best to the see the specialists especially if a new general doctor won’t continue prescribing the meds they put me on. If the general doctors aren’t schooled enough to change the meds if need be, if that’s not their specialty, then I thought I should bite the bullet and decide to go back to the specialists.
It’s like, getting all the meds from one doctor was convenient but maybe not the best in terms of what is best. Seeing the specialists will give them the liberty to tweak meds as necessary in the fields of their expertise. The general doctors aren’t comfortable or confident to do that sometimes. I get it. I’ll write back sometime after the dust has settled. The new doctor took me off a few long-time meds on our first visit. It’s exciting because I don’t know what will happen lol
I guess I’ll find out.
Hi
. I'm glad you'll be seeing a specialist even if it's less convenient. There are always new treatments in the pipeline and a specialist is more likely to be in tune with all that. Definitely let us know how it all goes. Warmly, Lori (Team Member)
ok well all the mental doctors that have put my daughter on depress meds now they don't want to help at all because they are say its medical now my daughter is have outburst yell at herself don't want to shower she is walk around in days how do I help her because her doctors won't help she has lost so much weight smoking 4 pk a day and drinks coffee like it is water. What the Clark Center told me was to lock her in a mental hospital so if someone in Missouri with this could help me find the right since no sleep dr will take her now please email me a good doctor
My heart goes out to you,
. Here is an article from the Narcolepsy Network with tips for finding a sleep specialist: https://narcolepsynetwork.org/resources/find-a-sleep-center/. I hope this helps. Gentle hugs. - Lori (Team Member)
I was told to push through it, the tiredness and brain fog...like I could control it!
How maddening,
. Are you surrounded by more supportive people now? Warmly, Lori (Team Member) Yes, I have a much more caring doctor now, Thank you
I was told to just drink more coffee or eat healthier.
If only it were that easy! - Lori (Team Member)
