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My Medication Doesn't Always Work

My Medication Doesn't Always Work

I take 40 MG of Adderall XR twice a day and have been for a long time. Now my morning dose isn't always effective sometimes for 2-3 hours ornot at all. The 2nd dose still does ok. I can't continue to live like this and my sleep Dr didn't pay any attention and just made me an appt for next year!! I'm so frustrated.

A MyNarcolepsyTeam Member said:

You are not alone! There is a new medication called Wakix or generic Petolisant. It is not a stimulant. Instead, it works by increasing histamine. I have an appt 23rd to hopefully try it. I've been in Ritalin for 40 years. Intermittently Ive tried everything else but Ritalin works the best. I think because of how it was prescribed. 1-20 mg extended release and 1-10 mg at the same time for morning dose. 2 hrs later repeat. 4 hrs later repeat. Then final dose no later than 4:30 p one 10 mg. I still have intermittent break thru times of sleep attacks that last 10-20 -30 minutes. Not often. Maybe once every few weeks. Stress and inadequate restorative sleep brings it on. I hate the disorder. It has been a lifetime of grueling constant feeling of having to push myself upstream in mud up to my neck. My husband was killed in a plane crash in 1977. I was 27. He was 32. I've had a career, raised our 2 children who were 2.5 and 6 y.o. back then. I qualified for disability on basis of Narcolepsy and was able, under widow status, to take it at age 50. I'm 70 now and would prefer to have kept working. No one can understand what we live with unless they have it. I think extra strength multiple B vitamins help. My best!

posted 5 months ago
A MyNarcolepsyTeam Member said:

Frankie: So far, Modafinil 200mg in morning does the trick for me. If I have an evening function, I take half a tablet (it's scored) around Noon so that my head won't slam into a glass of punch at the event.
The nights- I HATE the nights - I have nightmares that are SO Realistic, I'm mad at my wife the next morning. She endures a lot of crap to keep our marriage together.

Depression is another demon - naturally - that's common with narcolepsy. I take Cymbalta 60mg twice a day. It works 3-fold: helps with depression, helps a lot for chronic pain, & it increases short-term memory loss (a Bad thing-I think). I hope you find the right combination for you.
See Ya'.

posted 4 months ago
A MyNarcolepsyTeam Member said:

I've experienced siliar issues and with this contact you can hear what others have done..I suggest READ...And DrAmen..with Spect scans has lots of info on brain issues..Best wished tough iy out from an 80year old...Big ..check nutrition..

posted 5 months ago
A MyNarcolepsyTeam Member said:

You could ask your doctor to let you try Dexedrine. One is a dextroamphetamine salt andDexedrine is a dextroamphetamine Sulfate. They effect me differently, and I like the Dexedrine so much more than Adderal. Adderal makes me mean. Insurance complaints because it’s more expensive, but if your doctor request it, you’ll get it. Then, my doctor added Modafinil, and it helped a lot more , and helps me focus way better than I was. Keep after your doctor to keep trying things till you’re happy. Good luck

posted 4 months ago
A MyNarcolepsyTeam Member said:

Rose,the info you gave me is a good start. I can only use the time released adderall. At 1 point my insurance company stopped paying for it and I had to use regular adderall for 30 days. It was great for the 1st 4 hours and then I had a total crash so it was not definitely not a way for me to live. Then 5 years ago I Took a trip to Europe for the 1st time I would be gone for 2 weeksThe sleep doctor I had at the time was wonderful but but I was concerned about having issues and not being able to be awake and enjoy the tripSo I asked about using the regular adderall as a kind of bolus to use in between the extended release. That worked great but it only lasted a short time as all of the doctors at my sleep center wound up Leaving. I still have sleep attacks frequently late during the day my biggest problem is that I cannot get into any deep sleep at night. This is unfortunately caused caused by issues mainly with my upper back (Kefosis-opposite of Scoliosis). So I haven't had any real sleep in years. Functioning in the morning is really my biggest problem. I try to get up to take my adderall at about 7:30 every morning that doesn't always happen during to lack of sleep. It now takes about 3 hrs to work enough to function. So I'm usually not up until 10:30-noon. This sure is a mess. Lol. I had to retire about 15 yrs ago about 9 mos after my wife passed away. Anxiety and stress is definitely not a friend of Narcolepsy. Your words really did help! Thank you

posted 5 months ago
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