How Did You Go About Asking Your Doctor For Different Or Added Medication? | MyNarcolepsyTeam

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How Did You Go About Asking Your Doctor For Different Or Added Medication?
A MyNarcolepsyTeam Member asked a question πŸ’­

Second paragraph explains my situation a bit more but my question is this - I see so many people on here and other sources and support groups that are on a regimen including multiple meds. I feel so guilty for even asking and it's dismissed, like all I am to them is an addict in their eyes. I don't want to doctor shop at all and I know it's trial and error finding one that gets it... is this a sign I may need a new provider? If not, how do I get the doctor to understand the actuality of it all… read more

posted August 25, 2022 (edited)
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A MyNarcolepsyTeam Member

I know of numerous people, me included, that have had much better luck going with psychiatrists as they seem to have more specific knowledge of narcolepsy- even more so than sleep study doctors.

posted July 23, 2023
A MyNarcolepsyTeam Member

My doctor and I speak regularly. I was original on Ritalin. I moved and the new Dr, not endorsing Ritalin, put me on Adderal and Modafinil. They are working well. But we talk regularly. You should not feel guilty asking for something you need. I would look for anew doctor! Or at least get a 2nd pinion

posted October 3, 2022
A MyNarcolepsyTeam Member

This is called medical neglect. Yes get a new provider. I also suggest you get a sleep study for apnea. Sleep Apnea can also increase narcolepsy episodes with cataplexy. Since I have been using my bipap machine my narcolepsy with cataplexy has greatly improved. Also I agree that Cannabis sativa can help you a huge amount. Medical Cannabis has greatly improved my quality of life. Yoga has also improved my quality of life. Hugs hope and good vibes coming your way.

posted September 7, 2022
A MyNarcolepsyTeam Member

I have a medical marijuana card to explore different strains of cannabis with THC -- mostly in edible form. California is rich with cannibus products that can get you off 2 or 3 of your current meds. When I came back to my home state, however, medical marijuana dispensaries are just beginning to opening and their inventory is extremely limited. I have been unable to find anything here that might even have a chance of helping with good REM sleep as well as fending off violent dreaming.

I discussed all of this with my doctor and she was fully on board. Half of the country has excellent dispensaries and large numbers of senior clientele. Many doctor's offices in California expect people to report their M.M. usage on their drug lists!

posted September 7, 2022
A MyNarcolepsyTeam Member

Oh wow, that's awful he took you off of it so quickly! I tried Sunosi a few weeks back and within 4 days became suicidal. Not sure if Xywav has the same possible side effects, so maybe that's why? I have to be careful with any type of medication that affects the hormones in my brain or I slip into a dark place. I had no idea Sunosi altered the chemicals in your brain, lesson learned. The search for a good sleep doc is so frustrating! I hope you find one soon!

posted August 29, 2022

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