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Are You Frustrated With Finding Effective Treatments For Narcolepsy?

MyNarcolepsyTeam asked a question 💭
San Francisco, CA
June 17, 2024
 · 
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Answer Summary

Members shared deep frustration with finding effective narcolepsy treatments, describing struggles with supply chain issues for stimulant... Read more

Members shared deep frustration with finding effective narcolepsy treatments, describing struggles with supply chain issues for stimulant medications, pharmacist misunderstandings, heart damage from long-term stimulant use, and the emotional toll of medications that stop working or require constant adjustments just to maintain basic functioning. Several members offered hope by sharing what has worked for them, including Modafinil for long-term stability, Wakix combined with Jornay (a nighttime methylphenidate that activates upon waking), authorized generic Zenzedi, THC and CBD supplements, manufacturer savings cards, and practical strategies like stretching exercises before bed to prevent sleep paralysis. A recurring theme was the exhausting reality of living with narcolepsy, where even the best treatments offer only partial relief, forcing many to rely on faith, determination, naps, vitamins, and self-isolation to protect their safety and livelihood.

A MyNarcolepsyTeam Member

Yes. Very much so. Using stimulant meds and have had supply chain issues. Even was told by pharmacist at one point that I should tell my doctor to just get me some therapy for my lack of focus thinking I had adhd. Let’s say I shouldn’t have to fight to get my treatment that isn’t working much anymore anyway.

June 17, 2024
A MyNarcolepsyTeam Member

When I read all the answers.... in the first instant it seems interesting but in reality these answers are the cries of the heart. I am on a handful of medicines. Before going to bed I take Alganax 0.5 mg and Quetvell 37.5 mg. These two medicines put me to an uneasy sleep. After breakfast I get an excessive day time sleep attack. I take Prohiper 10 mg to ease this attack. But it does not work well. The whole day I feel sleepy. But if I take a nap after breakfast then I feel much better. It is not very possible for me. Because 5 days a week I have to go earn my living. And then after lunch I have to take Dogmatil 15 mg. I like it or not, these medicines help me to continue my employment (I am a teacher). Overall the life is miserable. It is only through my strong faith (Christian), prayers, determination and will power that I am able to earn a piece of bread. Keep it up guys.... look upward..... God is great.

June 27, 2024
A MyNarcolepsyTeam Member

I was able to work well with THC at night, CBD in the morning, and 5 to 10 mg of methylphenidate during the day. Now, since the supply chain issues, I am up to 40 mg a day and still need naps and always sleepy.

June 19, 2024
A MyNarcolepsyTeam Member

I was prescribed Vyvanse and Adderall for years. Taking them caused permanent damage to my heart. Now I can’t take the stimulants. It’s tough to stay awake and do things from my brain wanting to sleep and my heart struggling to pump blood & oxygen through me. Be cautious with the narcolepsy meds.

June 18, 2024
A MyNarcolepsyTeam Member

Finding the right meds has been as frustrating for me as finding the right doctor has been. My Venlafaxine had been a lifesaver but efficacy is only about 60%. I was on Wakix for 3 months before docs failed to get pharmacy consent, after waiting 9 months and now 6 months without. I am not winning to start and stop meds due to medical.office ineptness. Therefore I continue to live in self isolation for self protection.it sucks!

August 18, 2024

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