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For Those Diagnosed With Narcolepsy, Taking Stimulants, And Are Affected By The Weight Of EDS, How Are You Coping With The Shortage?

A MyNarcolepsyTeam Member asked a question 💭
York, PA

I find myself in a pickle that hopefully my support network can help me with. I have been plagued by the debilitating symptoms of my T1N and cataplexy for majority of my life. After trial and error, I found the best combination of to help with my severe EDS was unfortunately stimulants. For 8 years now, I have been on Adderall (both XR and IR formulations) and to be truthful, it saved my life but complications were axiom.

First, the lack of awareness and understanding within the medical… read more

June 8, 2023
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A MyNarcolepsyTeam Member

I haven't been able to get any Adderall or Ritalin on schedule or at all for almost a year+/-! We are struggling/suffering because others abuse these medications! This is so completely wrong!!! Just wondering if/how/when this situation will be corrected?

June 25, 2023
A MyNarcolepsyTeam Member

it sucks so bad :( today was my last day of my medications and I honestly fear when my cataplexy kicks in.

June 10, 2023
A MyNarcolepsyTeam Member

I have this problem with my medication refill on vyvanse all the time. My doctor prescribes me vyvanse 30 mg twice a day and Ritalin 20 mg 4 times a day. I have learned to save my Ritalin and only take my vyvanse once before work and once after work with a few shut eyes in between usually get me through the day. When it’s time for my refill and I have to wait a week or two to get ahold of my doctor, wait for him to fill my prescription and then find a pharmacy that actually has my meds. This sometimes takes up to two weeks so at least I have my Ritalin to make me through my work day although I hate the Ritalin compared to my vyvanse but yes I totally agree that the shortages and abuse is totally wrong when literally our quality of life depends on them !

December 13, 2023
A MyNarcolepsyTeam Member

Not that this reply helps except to let you know you are not alone. I am 59 and have been taking stimulants since the age of 21 therfore my body has built up a resistance to them and everytime i have to change doctors or insurance i have to start all over with dosing until the new doctor feels comfortable and understands i am not a drug seeker. Several years ago they stopped making the medication that actually helped me, since then it has been lg doses of Adderall which dosent do much for me and like you said with the national drug shortage it has been difficult i also have had to wait sometimes 2-3 weeks to obtain medication. I was going to keep this to myself but knowing there are others suffering i will tell you i recently started using Sams club pharmacy and have been able to fill my meds on time. Maybe this info can help. Best of luck i wouldn't wish this disease on my worst enemy.

June 10, 2023

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