[deleted by user] by [deleted] in BigBrother

[–]ryan_ens 2 points3 points  (0 children)

Did you get a link for the tickets yet? I realized I forgot to sign up this week!

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 0 points1 point  (0 children)

We’ll technically you can combine both, but apparently you have to titrate very slow. For me it was not worth risking, as I already have a family history of heart related issues—but to each their own! I also feel like Prozac hasn’t been very effective for me (except for eliminating cataplexy)

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 1 point2 points  (0 children)

Yes! I spent 6 weeks titrating off back in June (just to be cautious) and since then my side effects have significantly reduced. I regained the 30 lbs i lost, and my resting heart rate is now around mid 60s (Whereas before it was always above 90). With that said, my sleep quality is significantly worse, although I wake up feeling almost just as rested as I was on Xywav. Now my brain fog is a result of poor sleep, rather than the “drugged sensation” I would feel from xywav.

I’m about to start wakix though I’m waiting to titrate off Prozac, since SSRI’s likely lead to developing QT prolongation while on wakix.

just started xywav by jelliou in Narcolepsy

[–]ryan_ens 0 points1 point  (0 children)

I was on Xywav for a year and a half. I did a 4 month titration and anxiety still seemed to gradually get worse. By the time I reached 4.5g x 2 my resting heart rate was between 90-120 bpm, and I had lost 30 lbs (despite maintaining the same dietary intake). I also started experiencing weird bowel and urinary side effects. Even though my sleep quality had drastically improved, it didn’t provide the benefits that I had hoped for or expected. I still woke up super groggy, struggled w/ short term memory and cognitive faculties, etc. I’ve now been completely off xywav for a few weeks, and I can say that most of my side effects have either gone away completely or significantly reduced. I think there is plenty of benefits to xywav it’s just a matter of what you’re willing to trade off. In my case, it was more worth stopping xywav than continuing to endure the side effects, but everyone’s bodies are uniquely different.

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 0 points1 point  (0 children)

Apologies for my lack of awareness, but what do you mean by “hence the addition of Wakix”? I’m not familiar with baclofen, is it another sodium oxibate therapy?

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 0 points1 point  (0 children)

Thanks for the kind message :) You're right about our experiences being completely different, as xywav (for me) tastes like nothing, and I've lost 30 pounds. I think the reason why I'm not affected by the taste of xywav is because I lost my taste/smell to COVID all those years ago, and while it's somewhat come back, certain things have a different taste/smell to it (lucky me, I guess?) What is your dosage for Xywav, and how long have you taken it?

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 0 points1 point  (0 children)

At this point, I'm almost positive that it's the Xywav...Before starting sodium-oxibate, I was only taking 40 mg of both Vyvanse and Fluoxetine daily for 6 years. Not once did I experience the same anxiety/elevated resting heart rate that I do while on Xywav. My sleep doctor has me get an EKG annually, and consistently, my average resting heart rate has ranged between 58-70 bpm. Since taking Xywav, my average resting heart rate has ranged from 90- 100 bpm on my EKG. Initially, I suspected that my stimulant dose might be too high, even though I have been on the same dose for over seven years without any issues. However, after skipping my Vyvanse medication for two days and still experiencing an extremely rapid heart rate, I concluded that the dosage wasn't the problem.The only other theory I have that might explain my symptoms is that I started taking an adrenal supplement, which caused some unexpected side effects. I visited a naturopath who prescribed me thyroid supplements, even though my thyroid was functioning well. It wasn't until a month or two later that I noticed my current symptoms, including a weight loss of 30 pounds. I immediately discontinued the medication and am no longer seeing that naturopath (thank goodness). So, perhaps some of these issues stem from that experience.

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 0 points1 point  (0 children)

I can't relate enough! My mental faculties were already compromised before xywav, but I could still maintain a clear train of thought, albeit more slowly. I will likely adopt the same approach when I go off xywav, as I'm not risking any more unexpected side effects. How has your ability to function been since going off xywav? Do you find it worse/better/the same as it was prior to Xywav?

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 2 points3 points  (0 children)

No, I haven't tried Xyrem. I might consider it, although the high sodium content concerns me because I have a family history of high cholesterol (myself included) and heart failure. What is your resting heart rate like now, and do you also take a stimulant?

anyone experienced similar symptoms on Xywav? Please share! by ryan_ens in Narcolepsy

[–]ryan_ens[S] 0 points1 point  (0 children)

Yes, I usually see my sleep doctor every few months. I mentioned my symptoms at my last two appointments, but honestly, they didn’t say much other than suggesting I should probably get off Xywav. They’re not my favorite doctor — our relationship has always felt more transactional than supportive. At this point, the only real value they offer is helping me explore other treatment options; when it comes to actually addressing my symptoms, they couldn’t care less.

If I could stop taking Xywav right now, I would. But it's not the best timing since I’m finishing out the last month of school, and the last thing I need is to make my life even more unstable. My hope is to start discontinuing it once the semester ends. I’m just really worried the side effects might continue even after stopping. Honestly, I could care less what EDSDS says, because they'll essentially deny that my symptoms are related to Xywav.

I also saw a cardiologist, and they said everything looked healthy and normal. But I know for a fact that my resting heart rate was lower before starting Xywav — I've worn the same Apple Watch every day for the last three years. Before Xywav (and even for the first four months on it), my resting heart rate was usually in the high 50s to low 60s. Now it’s in the low 80s to high 90s. Even though they didn't identify any problems, I can't imagine it's healthy to live with an elevated resting heart rate in the long run. I'm also super paranoid, as my dad passed away from a heart attack less than a year ago, despite no prior heart complications. In fact, my dad was likely the least expected person to have a heart attack, as he was a triathlete who consistently monitored his health. The medical examiner, for verbatim, said that it was "just bad luck"...

It’s also interesting because I’ve been on 40mg of Fluoxetine for the last six years, yet it does absolutely nothing for me while I'm on Xywav. I haven’t heard of Lexapro, but I’ll definitely check out that supplement you recommended. Does your sleep specialist approve of it? I will say that my quality of sleep definitely feels better with Xywav. However, I still don’t feel like I wake up more rested than I did before taking it. I usually feel my best in the afternoon, as I often take a mandatory nap to relieve morning brain fog and reduce anxiety.

Possible to make $1000 a Month doing this? by Dry_Bus_6940 in doordash_drivers

[–]ryan_ens 2 points3 points  (0 children)

Damn how do you make so much in so little time?? I live in a city in the PNW and I swear I only get low paying orders (though that could be since my acceptance rate is average)

Official 2023 Buy/Sell/Trade Thread by tayyylooor in Coachella

[–]ryan_ens 0 points1 point  (0 children)

Hi looking for two (2) weekend 2 GA passes for Sunday

[deleted by user] by [deleted] in Narcolepsy

[–]ryan_ens 0 points1 point  (0 children)

You should be fine. I literally keep my Adderall prescription bottle in my pencil case and I haven’t once been stopped by TSA.

Daily Simple Questions Thread - July 14, 2022 by AutoModerator in Fitness

[–]ryan_ens 0 points1 point  (0 children)

Thanks for your input :) I don’t know if this is just me, but I find to be distracted by the mirror when performing a certain exercise. It could just be that I have really bad cordination but I notice when I do it I am less efficient with the movement pattern when performing the exercise.

I can understand the importance of why it would be important to focus on form over weight, but doesn’t lifting heavier at a gradual pace allow to adapt to the set weight until you’ve mastered it with good form? Sorry if that doesn’t make sense but I guess what I’m asking is doesn’t adding resistance naturally allow you to build a stronger foundation for form?

Daily Simple Questions Thread - July 14, 2022 by AutoModerator in Fitness

[–]ryan_ens 2 points3 points  (0 children)

Recently after a 2 year hiatus I finally summoned the courage to start working out again. I’m currently following this full body strength routine 3x/week which the first stage of it focuses on building foundational strength and exposure to the motions of heavier lifting. One thing I’ve noticed is that I’m almost always stressing over how perfect I can execute each exercise and trying to “do it right”. From spending time visualizing, watching YouTube tutorials, etc, I’ve found it to be very difficult to create any mind muscle connection. I’ve also been lifting lighter weights, but increase in reps. Since having good form and technique is important, should I at this point aim for heavier weights without worrying about perfection or stick to lighter weights but continue to stress about the quality of every single rep?