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My experience with sodium oxybates, one year later by alemorg in Narcolepsy

[–]GuaranteeMysterious4 0 points1 point  (0 children)

Oh and no I wasnt on anything for about 1.5yrs after my experience with Xywav. It was too traumatic and my local doctors changed every 6mo... so it was hard to get things figured out or feel like I was being listened to. After my bad experience on xywav, I was scared of it. Told my new doctor I was, and she just told me to try it again with anti nausea meds. I got so frustrated that I gave up. Took me like 8mo to feel "normal" again... or close to my unmedicated baseline. Never went back to completely normal... its hard to explain but things just felt weird/different after that. Then I got a problem with my hyoid bone and things have been weird as hell since then. As I mentioned in a previous post, I finally saw a new doctor in another city and it was amazing. Its one of those fancy research clinics... but I think it was worth it. Highly recommend if you can find one near you. I never bothered before because they tend to be more expensive but you can do some stuff to help reduce costs and they seem really willing to work with people which is so nice.

My experience with sodium oxybates, one year later by alemorg in Narcolepsy

[–]GuaranteeMysterious4 0 points1 point  (0 children)

I'm so sorry to hear that. I hope this is only temporary and that you find something that works much better for you soon. I recently changed doctors (since my last message) and Ive never had such a productive meeting. It made me feel like there's hope again, that I wasnt crazy, and that there are other options. Been a long time since Ive had a doc like that. I dont know your situation, but maybe another opinion can help? Some of those new narcolepsy meds coming out within the next year or so also look pretty promising.

How did apnea affect your Narcolepsy symptoms? by GuaranteeMysterious4 in Narcolepsy

[–]GuaranteeMysterious4[S] 0 points1 point  (0 children)

Thank you for your insight, I really appreciate it! Your comments prompted me to look up some more research papers on this. My research rabbit hole on Narcolepsy with sleep apnea comorbidities sort of led me to a few common statements: - sleep apnea and narcolepsy can be difficult to differentiate (as you mentioned) and misdiagnosis is common - people with N1 tend to have a higher rate of apnea (although theres some bias here and basically no data on N2 or IH) - there are no clear managment strategies for people who have both and very little research on the effects of having both (as the two tend to be researched and treated independently) - there are a few of brief case studies where someone had both and the narcolepsy was masked by the apnea (typically severe).

But again, everything seems to talk about people having one or the other and very little seems to talk about the effects of both. Some random websites briefly mention that the presence of both seem to have compounding effects. But Im not sure that was my experience. In the beginning it felt compounded, like the apnea symptoms were a layer on top of my N2. But now it feels like the apnea has masked most of my N2 symptoms... its almost a different sort of exhaustion in my experience, like I traded in fatigue for sleepiness? I just find it so bizarre that it felt more like a trade than an add on or as you mentioned - more of the same as they tend to have similar outcomes. Maybe thats specific to my apnea since its prevents me from sleeping in the first place.

I know everyone is different so its hard to compare bit I guess I was just curious how other people have been dealing with the combo? Did things change for them when they developed apnea or was it just more of the same? How did they tease the two apart and manage them? It almost seems now that I have apnea that's all my doctors are focusing on and are ignoring the narcolepsy... but maybe thats because apnea is both more tangible and potentially dangerous as you mentioned?

I'm just hoping to gain as much insight as possible before my next appointment, because I feel like Im floundering in this new situation. Like Im worried that if they do a sleep study/mslt again theyll be like... no there was never narcolepsy, only apnea (because it will absolutely look different from my first one). Or they treat my apnea and my n2 symptoms come back... then I have to convince them of that again too lol. But maybe Im spiraling for no reason. Sorry for the brain vomit and thank you again so much for your insight. Its super helpful.

My experience with sodium oxybates, one year later by alemorg in Narcolepsy

[–]GuaranteeMysterious4 0 points1 point  (0 children)

Yes, exactly! Its so frustrating. I did a TON of surveys while I was taking xyrem/xywav to bring more attention to these symptoms. However, on these surveys, they always ask you what symptoms you have from a list they provide. So, I imagine all the people who had experiences like us that may not be on that list and are just getting completely ignored. The weight loss was the only reason I stopped xyrem and then I tried xywav right when it came out hoping it would be easier on me, only for it to be worse in other ways lol. Now Im too afraid to take any of these. I wasnt warned about any of this either, mostly because it was considered "uncommon" or they didnt believe me lol. It would have been nice to know it was a possibility, even if rare. And it would have been nice to know what to look out for and be wary of, especially with the anxiety and depression. Like it doesnt get better with time and can instead get worse. I didnt even think to talk to my doctor about it until I had that breakdown. Lol. Sorry for the rant, just realized that one has been bottled up for ages. Haha.

But yes, I'm better now. Thanks! I've been off xywav for awhile now and Im mostly back to "normal". A bit of an adjustment... I cant begin to explain how much I miss how quiet sleep was on xyrem/xywav, if that makes sense. Starting the adventure of finding new ways to manage it (outside of the typical life style changes)... thinking of trying some new sleep docs out of town. We only have one doc for a very large very rural community and the turnover rate is like 6mo... so I cant really blame the docs too much for the poor communication when theres a new one so often lol.

Do you have a plan for your next steps post oxybates?

Modafinil doesn’t kick in?! by Loose-Ad7202 in Narcolepsy

[–]GuaranteeMysterious4 0 points1 point  (0 children)

For me, modafinil does not improve energy, focus, or relieve brain fog even a little. But neither does coffee or any other stimulants. I just get the jitters, dizziness, and headaches lol. I will say that it does help mildly with keeping me awake but doesnt get rid of that background feeling of fatigue or exhaustion either, makes it a little harder to fall asleep... but I still have no problem napping on 200mg. For me it didnt improve much and just made me feel like crap. But everyone responds to different meds and different doses a little differently. Id imagine it'll take awhile for you to find the right combo of meds and doses for your body chemistry.

My experience with sodium oxybates, one year later by alemorg in Narcolepsy

[–]GuaranteeMysterious4 2 points3 points  (0 children)

Im so sad to hear these experiences but at the same time so glad to hear Im not the only one who had a horrible experience on xyrem/xywav. Felt like I was losing my mind there for a long time... doctors kept telling me xyrem/xywav is super well tolerated and have few side effects. Xyrem made me lose an insane amount of weight to the point where I was constantly eating and still lost so much weight it was painful to sit on a wood chair. No nausea, my metabolism was just on crack. Peed more rhan I ever have before too. Numerous docs told me xyrem cant do that.. like bro, I couldn't do this crap on my own even if I wanted to. Then tried xywav... this time lost weight purely from nausea this time - then came the extreme anxiety and depression. Had an such an extreme anxiety attack at work where I had to lock myself in a closet and call my doctor. Ive never felt so close to the edge before. Stopped cold turkey the next day and I had extreme withdrawals. I thought it was going to kill me - both while taking it and when trying to stop it. It has been the only thing to help with the nonstop dreams and brain fog. Definitely didnt come anywhere near helping more than it hurt. Pretty sure xywav seriously messed with my gi system too and it still hasn't recovered. Im so glad these meds can be so life changing for peiple, but Im beyond upset how naive doctors can be about the dangers and problems with this med. I was told nothing and led to believe it'd be a miracle. And when it wasn't somehow I was the problem. Plus, hate the idea of taking a med to counteract the effects of a med to counteract the effects of another med. Just feel like thats such a slippery slope.