What Do You Wish Your Doctor Better Understood About You?
Ritlin does work
Maybe it is time to change doctors. Because of my health situation I have several doctors and surprisingly enough they seem to know about narcolepsy
and understand me. As I was discussing narcolepsy with one doctor and when he left the room , the nurse came up to me and thanked me for teaching her about narcolepsy. She said that she did not know all that was involved with this condition. She just thought that people fell asleep a lot. I think the part that really got her is when I updated my meds on my chart I pointed out that I quit taking provigil because although it kept me awake it increased my hallucinations to vivid and real life color. So I was awake but I guess still going into REM .I would actually dream in a micro nap what the person I was talking to was saying then come out of it and get the conversation wrong mixing the dream and the real conversation.. When people hear about my craziness with narcolepsy it opens their eyes.
@A MyNarcolepsyTeam Member
Just wanted to tell you about 3 things. 1) there's a book called Overload: ADHD and addiction that talks about when you get the correct meds for ADHD, you are less at risk for illegal drug use - if you need to advocate for yourself. 2) Try to remember you have rights as someone with an addiction issue - in some places they even have to hold your job for you if you need to go to rehab.
3) If you haven't heard of JAN, Jobs Accomodations Network. You can find them on the internet. They may also have strategies or resources to help you with the job issues.
Let us know how things go. We are supporting you!
I have obstructive sleep apnea and ADHD. I was also on buprenorphine for almost 10 years paired with Klonopin and think it really exasperated my condition. I have been on Adderall, Provigil, illegal stimulants, Strattera - the whole nine over the years. Because I have a history of addiction, its frowned upon for me to continue any stimulants. I have been in recovery (again)for the past 5 months and have lowered my Adderall to one of the lowest doses, and lost weight and my symptoms have improved... however the non-narcotic meds do little. Provigil was the best but in the past few years, it has become scheduled, and now even that is frowned upon by most providers so I am being forced to wean off and I am compliant but honestly fearful. I don't get REM sleep unless I have 9-12 hours of undisturbed sleep and as a single parent who works, that is not always possible. Has anyone else had pushback against Provigil perscriptions and stimulants even with confirmed diagnoses related to sleep disorders? It's made me not able to take on full-time work because I simply can't function and feel rested without medication.
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What Do You Wish Your Doctor Better Understood About You?
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