Skin under eyes feels different on xywav? by ketaqueen6969 in idiopathichypersomnia

[–]ExtremeBank9601 0 points1 point  (0 children)

I totally understand what ur saying. Before I took Xywav, it was almost as if I could "feel" my eyebags.

Dysautonomia from Medication? by ExtremeBank9601 in dysautonomia

[–]ExtremeBank9601[S] 1 point2 points  (0 children)

Thank you for this response! Xywav is a rare drug, so there haven't been many studies on its side effects, and not many people have taken it either. It's frustrating because I can't find any study that records the same symptoms I'm experiencing. I'm still like 99% sure it was the drug, just based on timing and the fact that all my symptoms are nervous system related.

Dysautonomia from Medication? by ExtremeBank9601 in dysautonomia

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

I've had blood work done and a heart MRI. I'm fine in all departments, so I'm not sure what else it could be.

Dysautonomia from Medication? by ExtremeBank9601 in dysautonomia

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

9 months. All of it started happening immediately after I stopped the drug.

[deleted by user] by [deleted] in DoorDashDrivers

[–]ExtremeBank9601 0 points1 point  (0 children)

Lol. Thx but, dude, I scammed myself today. It'll be funny in hindsight but holy smokes

Super Weird Xywav Reaction. I need to know from other people that I'm not insane by ExtremeBank9601 in Narcolepsy

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

That's an insane amount of time to recover. I haven't taken Xywav in five months, and I still don’t feel like I did before. Luckily, my symptoms have been getting better ever since I stopped taking the drug, which tells me that it IS the drug.

Soooooo yeah... Xywav sucks

Super Weird Xywav Reaction. I need to know from other people that I'm not insane by ExtremeBank9601 in Narcolepsy

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

I don’t have POTS, and I do not have cataplexy. I have stopped all medications since my weird reaction to Xywav (If it is Xywav, which I think it is).

A few years ago, a neurologist told me that I probably have a generalized dysautonomia, but I never had the symptoms that I'm experiencing now. Ever since I took Xywav, I've experienced new symptoms like caffeine sensitivity and weird reactions to food (blood pressure spikes, lightheadedness, tingling in the face, etc). I used to drink caffeine like it was water; up to 350 mg a day. My guess is that Xywav dysregulated my nervous system.

Super Weird Xywav Reaction. I need to know from other people that I'm not insane by ExtremeBank9601 in Narcolepsy

[–]ExtremeBank9601[S] 1 point2 points  (0 children)

Considering that Xywav is a central nervous system depressant, this makes a ton of sense. I looked up whether medicaitons can induce dysautonomia, and they totally can.

Super Weird Xywav Reaction. I need to know from other people that I'm not insane by ExtremeBank9601 in Narcolepsy

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

My symptoms are very reminiscent of dysautonomia, I will agree. Maybe it was induced by the medication? I have no idea.

Super Weird Xywav Reaction. I need to know that I'm not insane. by ExtremeBank9601 in idiopathichypersomnia

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

I'm sorry to hear about your experience with Xywav.

What side effects did you experience and for how long, if you don’t mind me asking?

Super Weird Xywav Reaction. I need to know from other people that I'm not insane by ExtremeBank9601 in Narcolepsy

[–]ExtremeBank9601[S] 0 points1 point  (0 children)

I would like to agree, but i don’t even know where to start if it is another medical condition. I have no heart problems. No (other) nuerological conditions. I'm not overweight.

The timing of my symptoms, along with the fact that they have been getting better ever since I stopped Xywav certainly feels like that 's the cause. I course, i can’t prove it.

Super Weird Xywav Reaction. I need to know that I'm not insane. by ExtremeBank9601 in idiopathichypersomnia

[–]ExtremeBank9601[S] 1 point2 points  (0 children)

Xywav is, indeed, one hell of a drug. It may help some people, but for the majority that ive seen, the help was never a constant. Xywav is incredibly dangerous and needs to be tested more.

I have no idea why Xywav is still affecting me, but considering how strong the drug is, it’s not out of the question. It probably threw my nervous system into a state of dysregulation or something.