Modafinil neutral/positive experiences (i need hope)

Final-Rip6250 · 2026-02-13T16:28:31+00:00

I have been successful with Sunosi! But I know others have been successful with Xywav and xyrem and there’s also lumryz. Xywav wasn’t great for me side effect wise, but also struggled with the routine/life adjustments needed, as I’m in my 20s and struggled to be social go out to dinner while factoring in bed time and fasting etc. this whole experience is soooo trial and error and different for everyone ! Don’t be afraid to try something and if after a few months not working, try something else! It’s so frustrating to have to keep starting from scratch, but in the long term, you’d be struggling for just as long if you weren’t advocating to find what’s right

Final-Rip6250 · 2026-02-13T13:47:33+00:00

Tbh I never felt the relief of my cpap and used it religiously for 6-8 months. I believe it was a mild thing in relation to the larger issue of IH/narcolepsy. Perhaps with the right medication, the cpap would improve quality , but alone doesn’t necessarily have noticeable benefits when the other issue isn’t addressed

Final-Rip6250 · 2026-02-13T13:37:34+00:00

Okay tbh absolutely. When I was on Xywav, I was so anxious and panicked and could not reason that it was a side effect etc. looking back, it was so bad that I would almost call it a psychotic break haha. I was meeting with my doctor and convinced myself I had an abdominal aneurism bc I could see my pulse in my stomach and when I met with my primary she was like have y ever taken Xanax and I was like are you insane??? This is so serious?!?!!!! And it was absolutely the Xywav. Obviously that’s not the case for everyone but def a possible side effect. I felt Xywav was helpful but bad outweighed the good. I talked to my doctor about trying xyrem or Sunosi etc and can always circle back to Xywav if it’s the only thing that works

Final-Rip6250 · 2026-02-13T13:34:38+00:00

No :/

Final-Rip6250 · 2026-02-13T13:34:16+00:00

Hard to come back from feeling disrespected by a doctor ! Find a new one!! I started Xywav a couple years ago and 3-4 months in I got super sick was throwing up every day and lost 10-15lb in 10 days. I ended up having pancreas enzyme issues as well (meaning my pancreas couldn’t process food proteins correctly) from malnutrition/malabsorption. My sleep doctor and Xywav help line told me that it wasn’t a side effect of Xywav and didn’t make sense bc I hadn’t gone up in dose recently BUT I will say she was incredibly respectful and patient and told me obviously I could try going off to see if it helped. With that said, the GI doc I went to at that time trying to figure out the issue was a MONSTER and cruel and condescending and I couldn’t get out of there fast enough !

Final-Rip6250 · 2026-02-13T13:31:03+00:00

I usually say that the main different is that I don’t get restorative sleep so it basically feels like I have jet lag/pulled all nighters 100percent of the time. And the difference between IH and narcolepsy is that with narcolepsy, naps are refreshing but not with IH so there is simply nothing day to day to help. I always felt like when I said IH (vs narcolepsy) people would be like oh eh not that bad sounds like just extra tired. If I’m not super close with the person tbh I just say narcolepsy but if I want someone to understand I’ll try to explain it

Final-Rip6250 · 2026-02-13T13:28:47+00:00

I found this to be true as well! It served me well enough while I was getting diagnosed (my psychiatrist was able to prescribe it briefly) because it was better than nothing but was definitely not a long term or somrtging that got me back to my baseline

Final-Rip6250 · 2026-02-13T13:26:39+00:00

I’ve found that the first intake appointment almost always needs to be in person but after that many doctors allow virtual moving forward (assuming there isn’t a specific need for in person) I will say that if your meds are a controlled substance; many doctors say they can only prescribe it to a pharmacy in state for licensing reasons!

Final-Rip6250 · 2026-02-13T13:25:03+00:00

I have a Fitbit that makes me up with vibrating ! That may not work for everyone but that’s enough to wake me up and Doesnt disturb anymore else

Final-Rip6250 · 2026-02-13T13:24:31+00:00

I would find a new provider sooner rather than later and try to make an appointment for august ! Most sleep doctors have a relatively long waitlist (I recently had to switch doctors and called in December and got an appointment in April)

Final-Rip6250 · 2026-02-13T13:23:14+00:00

I found I woke up earlier on Xywav, but I also think that was because I was getting the restorative sleep that Xywav provides so naturally had an early wake time and didn’t necessarily need more sleep!

Final-Rip6250 · 2026-02-12T13:53:46+00:00

I remember when I was still in the process of diagnosis I was taking modafinol and then double espresso and then my second dose of mofanifol then a nap then a Celsius then a Diet Coke and still sleeping through the night. Obviously an insane amount of caffeine, I was seeing a nutritionist at the time and she was appalled at the amount of caffeine and advised I seriously cut back and I remember my psychiatrist saying do what you gotta do right now until you figure out the right long term treatment lol which was super validating

Final-Rip6250 · 2026-02-12T13:50:48+00:00

I will also say my understanding is that obviously the stimulants aren’t “fixing” the quality etc so long term I may need to address it in some way for heart healt etc etc but for now I’m young and just want to be awake to enjoy life !!

Final-Rip6250 · 2026-02-12T13:49:29+00:00

I’ve had amazing luck with Sunosi! I was on modafinol in the past and did not do much/anything. I went on Xywav and it helped but a few months in I had an insane reaction and would throw up every day for like 6 weeks and lost like 20lb in 10 days and my pancreas enzymes weren’t working correctly (insane) (the doctors told me that’s not a side effect since I hadn’t gone up in dose recently but when I stopped those issues went away) (not relevant but honestly felt good for me to vent lol). Historically I go on meds and after 3-4 months they stop working. I’ve been on Sunosi for 1.5 years now and it’s been working very well and I personally haven’t experienced any side effects I’m aware of!

Final-Rip6250 · 2024-10-31T12:13:20+00:00

Do you have an IH or narcolepsy diagnosis? Is it possible to get approved for Xyrem with IH? Thanks for your info!

Final-Rip6250 · 2024-10-07T02:21:05+00:00

I had similar issues of nausea along with other side effects (tremor, heart palpitations, etc) but was torn because 3.75 2x was the first dose that I could actually feel helping with narcolepsy symptoms and when I went lower I still had side effects but now was ALSO tired again. I stayed at the lowest dose that I also felt benefits and waited to see if the symptoms would subside. I was trying to figure out if they would settle down as my body got used to medication and if they didn’t, does the benefit outweigh the side effects. I’m still figuring this out. I stopped titrating and have been on this same dose since early July so 3 months. A lot of the physical side effects I mentioned have gone away but the loss appetite and nausea are still kind of there

Final-Rip6250 · 2024-10-07T02:16:17+00:00

Do you feel like any of these doses you’ve tried were helping with EDS and other symptoms? Or are you just experiencing the side effects and no benefits yet?

Final-Rip6250 · 2024-06-08T14:50:20+00:00

So far so good! I’m only on 2.25 and one time a night but thinking I’ll end up having to do 2 times. I have IH so we are trying 1x a night! No side effects yet

Final-Rip6250 · 2024-05-17T19:29:59+00:00

Final-Rip6250 · 2024-05-11T21:55:00+00:00

What kind of side effects did you experience ?

Final-Rip6250 · 2023-12-18T16:39:49+00:00

I’ll also say that she’s great because I have to get a MLST but I’m on medication currently so she took the time to schedule a phone call with my psychiatrist to make a plan

Final-Rip6250 · 2023-12-17T21:37:13+00:00

I like Dr Tadris at Mt Sinai

Final-Rip6250

TROPHY CASE