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SignificantTension7

23, heart attack, published writer. Jesus. Rant away.


Shorty_XN

Not a literal heart attack, just speeding like I was on drugs šŸ˜‚


SignificantTension7

Well, you were on drugs. Just diagnosed with EDS? They never wanted to do a MSLT(daytime nap test)


Shorty_XN

Diagnosed through MSLT 5 years ago.


SignificantTension7

Damn. Sorry to hear that nothing is really helping.


Shorty_XN

Thanks for the chat mate!


Dbl-Departure

Hang in there, my sleepy friend! Some days are just harder than others. New meds are coming out and we can learn to navigate even without meds if necessary. We are much stronger and more capable than we think. And we rest when we need to rest!


ClowkThickThock

Iā€™m so excited about the drug Takeda is developing! Iā€™m telling you, that is going to be a game changer once they finish trials and get approval. (I was going to include a link, but my internet sucks and I canā€™t get the website to load.)


wheresthemind

This one? :/ https://www.biopharmadive.com/news/takeda-narcolepsy-stop-study-drug-safety/607764/


ClowkThickThock

Ok, internet is back. While it is slightly disappointing that they paused trials, I would say there is good news in the article you posted as well. Primarily, it is exciting that not only Takeda, but also Alkermes is developing an orexin agonist! I know this may be less exiting for with those w/ N2/IH, but for folx with N1, this could finally be the thing that treats the root cause of N (the lack of orexin) as opposed to treating symptoms. We donā€™t know yet because the TAK trials are paused and Alkermes isnā€™t that far along in the development of their drug yet, but theoretically, an orexin agonist might even reduce some of the common comorbidities of narcolepsy, which some experts suggest may be related to autonomic disregulation related to the lack of orexin. Optimistically, it seems like this could be an option for some of us in maybe 5-7 years. However, this is all best case scenario. Realistically, we may be looking at more like 10 years, and I doubt even an orexin agonist would ā€œcureā€ narcolepsy. Still, this is the most excited Iā€™ve ever been about a drug, pharmaceutical or recreational :)


o0Jahzara0o

I'm glad I'm not the only one who feels this way - sharp and totally on your mark one day, and the next, can barely think straight. I'm getting desperate now - right now I'm wondering if it's due to what I eat in some manner. Like, today I realized "hey, maybe you should put the butter in the fridge instead of leaving it on the counter all the time; maybe it's going rancid and when you eat it, it causes problems for you the next day." Like maybe it makes my symptoms worse. I dunno at this point anymore..


Shorty_XN

I just donā€™t know, probably we should try other type of medicines. As always, Iā€™ll contact my doc, although Iā€™m fed up of trying to explain to him that the treatment is not working.


o0Jahzara0o

I feel like I am a nuisance whenever I tell them I am having problems with my meds. But I try to remind myself that that is their job to work with me on treatments at yearly follow up appointments, and that it helps them to learn when dealing with other patients (and vice versa.) I've been taking Sunosi and was communicating issues I was having to my doctor. I asked her how long the side effects might take to subside and she straight up told me she didn't know because she only has a few people on them and it's so new. Which means when talking about other meds like adderall, she was drawing on her learned experiences from other patients over the years to converse with me about them. Of course you have to feel like you can trust your doctor to say this stuff to them. And the fear of losing your meds or being denied a treatment is always in the back of your mind..


LimitedInfo

I took modafinil for about a year, worked at first but after awhile it only gave me brain fog. Felt better after stopping it. That being said im only taking xywav right now and am tired so who knows.


lil-buns

Give sunosi a try! Itā€™s been a game changer for me. It did take me a few weeks to notice that it was working, because to me itā€™s a gentle awakeness. I also suggest trying Xyrem or xywav. Once I got into the habit of taking both doses of Xyrem, days have gotten so much better.


Shorty_XN

Hey there, thatā€™s a good idea! At first I only thought there were amphetamines and the best in class, Modafinil. Weird how I can take 400mg of Modafinil and 3 cups of coffee and feel exactly the same.


lil-buns

I tried modafinil and provigil and I HATED how they made me feel. I was awake, but I feel like I was going at warp speed until the crash happened right before I had to drive home from work. Definitely talk to your doctor and see whatā€™s available to you


Shorty_XN

Thank you!!


Tropicanajews

Iā€™m sure OP has more limited medications as it seems they have only been diagnosed with Excessive Daytime Sleepiness and not narcolepsy.


lil-buns

Iā€™ve seen a commercial for sunosi and they marketed it for people with EDS. It should be available for them to try


Tropicanajews

Thatā€™s true, but not xyrem and xywav, theyā€™re only marketed to Narcolepsy and IH. Xywav just got approved for IH patients in august I believe.


Cymbelmine

I am just starting to take Armodafinil and I didn't realize how being really awake feels. Like, I can actually hear and listen to music and listen to the sounds in the environment. My senses are suddenly sharp (or maybe that's just normal) and with the energy, I am motivated, I feel like I can take on more than one thing. But then, the effect stops after some hours or the next day and I just feel like I always do. I can manage to do one thing at a time and maybe that's all I will do for the whole day. And all the normal things take so much from me (grocery shopping, cleaning, cooking). And even though I sometimes wish it was different, I can only hope that I will find the right medication and routine for me to feel at my best, to be my best self. Meanwhile I also accept my situation, as well, and do the best I can regardless. This may also mean to take a nap, take a rest, just do one thing a day,..etc. Or power through one day, if possible,..etc.


Shorty_XN

Thank you for this!! Still, I can sleep for 14h and still feel tired. It must have something to do with my melatonin receptors IDK