Reply To: Can't keep a job bc I can't wake up

I feel your pain! I’m 37 now, but by your age I had been fired from 26 jobs, mainly because I couldn’t t get out of bed. I was diagnosed with narcolepsy at age 32 and it’s still a regular struggle. After many versions and trials, What’s worked best for me is to set multiple alarms, in another room. I found it just too easy to turn off a phone alarm without remembering. The first one is set at least half an hour before I need to get up. I have to get out of bed to turn off the alarm and beside the alarm I have a glass of water and a dish of modafinal (I can’t open pill bottles when I’m tired). I also pre-make coffee the night before, and turn it on at the first alarm. At the second alarm I still have to get out of bed to turn off, but my pills have kicked in and I can usually force myself to stay up at that point. Without the meds it’s impossible though, and I’m not always successful. Sometimes I go through all that and the idea of showering is just too exhausting and I go back to bed, even with the high dose of meds. I feel ya sister! Good luck!

Reply To: Cannabis Oil Cheat Sheet

For parents who use medical marijuana…

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Reply To: Oh, flumazenil….

Hiya Shimmers! I don’t know anything about Flumazenil but I wanted to congratulate you on your persistence in finding something that works for you. I know it’s been a long haul for you and I sincerely hope that it continues to help.
All the best!

Reply To: Drug Resistance Issues Need Help

@natdoc and @bryanntn

Natdoc, this patient has a very high tolerance to pain meds as well so I think the gene testing is important for them. He/she could waste years of trying every stimulant out there to no avail.
And, yes, to taking good care of ourselves because that should always be a priority. There’s absolutely no point in finding a stimulant that works if we abuse ourselves. You may as well keep your eyelids open with toothpicks.

Reply To: Drug Resistance Issues Need Help

bryanntn
Welcome to the forums. Sorry to hear of your current troubles, however, please note that this is a long drawn out process especially when trying mew meds. You may opt for genetic testing which may help guide your physician as to which medications will work better for you.
Whichever direction you take know that thee are options for treatment and also new medications are about to be cleared by the FDA for use in narcolepsy. Remember to eat as healthy as possible, exercise and get plenty of sunshine along with scheduling naps for yourself every day. These are things we can do for ourselves in order to assist with any pharmaceutical help available.
Please keep us informed of your progress and best of luck.

Reply To: Drug Resistance Issues Need Help

@bryanntn
Good morning. Sorry you are having so much difficulty but you are not alone and we are all unique in our genetic make up. Unique in the way our bodies work. It can be a very long trial and error to see what works for you or you can cut to the chase with some clues about how your body reacts to specific medicines. It could even save your life.
I got interested in this because, for my hubby, NOTHING worked for pain relief while he was battling cancer. He once even took 20 morphine pills in desperation and nothing happened. I have warned his sons.
And, for the record, I was diagnosed with Narcolepsy and Cataplexy when I was 35. I will be 68 in December, 2019. It’s been a long haul.
You may want to bring the following articles to your Doctor’s attention but please read them for yourself. Knowledge is the greatest prescription of them all.

https://www.crediblemeds.org/files/3913/6973/9557/pgx-brochure2011.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3110519/

Reply To: Cannabis Oil Cheat Sheet

An absolutely fascinating read…

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