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Brentus
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Default Mar 02, 2024 at 01:59 PM
 
@Tart Cherry Jam , I would suspect then that maybe a methylphenidate product, especially a slow releasing one like Concerta, in a lower dose would really help with those side effects. I'm unsure, however, how effective a low dose will be for keeping you awake though. Most of my knowledge of stimulants is for the use for ADHD, and in general for narcolepsy the dosages tend to run a bit higher. Obviously your doctor will be the expert here -- but that would be where I see things going since wake inducing-agents are off the table.

This following excerpt is about ADHD meds not working correctly, but I think it applies to you as well. It's partially where I've gained the knowledge about these medicines and how they are used, and differ.

ADHD Medication Stopped Working? Troubleshoot Problems
"In general, younger or newly diagnosed children do better on methylphenidates, as do those sensitive to stimulants. Usually it’s best to start with a small dose of short-acting methylphenidate to see if it is tolerated, and to gradually increase the dose to find the optimal dose for that individual. After a tolerable dosing range is established, a longer-acting form of methylphenidate, like Ritalin LA, Jornay PM, or Quillivant XR, might be tried.

Adolescents and adults generally do better on amphetamines, like Adderall, Mydayis, or Vyvanse. But there are myriad exceptions, and no one knows right off which class will work best. If an individual is sensitive to medications or to caffeine, perhaps start with a trial of methylphenidate before trying an amphetamine."

So in this case, straight dextroamphetamine (the stronger entianomer of amphetamine) at the lowest dose causes you a lot of issues. Therefore, maybe rather than trying something like Adderall (a 3:1 mix of dextro and levo-ampetamine), I would think a methylphenidate would be the better way to go, since you seem sensitive to amphetamine.

It's important to note most people respond well to one or the other molecule -- but there's no way of knowing which you will respond best to.

Just to try to relate this better to narcolepsy, I've found this info:

https://www.mayoclinic.org/diseases-...t/drc-20375503

"Medications

Medicines for narcolepsy include:

Some people need treatment with methylphenidate (Ritalin, Concerta, others) or amphetamines (Adderall XR 10, Dexedrine, others). These medicines are effective but can be habit-forming. They may cause side effects such as nervousness and a fast heartbeat."

So, methylphenidate is a valid narcoleptic FDA approved option here. If you cannot tolerate it, I guess the next option would be trying alternatives like TCAs or SNRIs.



Like I said in the beginning, there are options to help you -- it's just a matter of seeing what will work for you.


Again, there's an article on ADHD meds, not specifically narcolepsy, but it talks about how a certain percentage of people have an "optimal dose" below the recommended or lowest made dose. There are ways to acheieve those doses as well, especfially with methylphenidate -- which comes in liquids, chewables, patches, ODTs etc. There's plenty of options and delivery mechanisms to augment actual dose.
Perhaps even with your Dexedrine could be cut back from 5 to half?



I hope this info finds you well, and you can work with your doctor to figure out what is best for you!

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Last edited by Brentus; Mar 02, 2024 at 02:52 PM..
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