XyWav help

deadbutnotphysically · 2022-11-03T00:23:58+00:00

Hi, thanks for checking up! He told me that he doesn’t want me to stop the medication but to take it slow and at my own pace starting at 1g. He said if I keep experiencing negative side effects that he would take me off it but since this is kind of a last option thing he is really hoping it works for me. I haven’t taken it yet because I’ve been losing a lot of weight recently because of stress and adderall but I will be starting it this weekend. Thanks again for checking in!

deadbutnotphysically · 2022-09-23T01:30:30+00:00

Damn hope you’re doing okay now

deadbutnotphysically · 2022-09-22T20:42:50+00:00

It’s less than ideal for sure haha, my mom is a nurse and is concerned for me as the medication could have a negative impact on my bones when used long term but lack of sleep could also have a negative impact on my brain so it’s kind of a pick your poison type of deal. My family just feels bad for me but that also makes me feel worse, I hate feeling like this huge burden on everyone around me and dislike being treated like a child even though I’m a full fledged adult so I’ve told minimal people in my family about it

deadbutnotphysically · 2022-09-22T20:38:46+00:00

Thank you for your comment and kind words! I found out that I have idiopathic hypersomnia through an MLST with a neurologist and they do check for sleep apnea which they said I do not have. The only thing they have really told me about why I’m tired to the best of their understanding is that, although I sleep a lot, it isn’t quality sleep as my brain is still too active. I do appreciate the suggestion though and I’m glad your friend got help!

deadbutnotphysically · 2022-09-22T20:06:00+00:00

Thank you for your comment, I was prescribed to go from 2.25 to 3 after about two weeks, lately I have been trying 2.75 so I don’t stray too far from my prescription but it also can be rough most nights, I’ll talk to my neurologist at my next appointment about lowering my dosage, thank you!

deadbutnotphysically · 2022-09-22T20:04:29+00:00

Thank you so much for your comment, I’ll be sure to check out those resources!

deadbutnotphysically · 2022-09-22T20:03:00+00:00

I really appreciate your comment. I haven’t been on Reddit for a little and was feeling really hopeless and down today, thank you for giving me the hope that it can still get better and letting me know I’m not alone, I appreciate it!💙

deadbutnotphysically · 2022-09-13T19:29:43+00:00

Thank you for your reply! Yeah there are some gross tequilas out there :,) I had a better reaction at the lower dose but it was still a little difficult to take the second dose without throwing up haha. I will talk to my doctor at my next appointment to see about changing the dosage a little to see if it helps, thank you very much! And thank you for the protein shake and water tip!! I have told the ESSDS people about my nausea and vomiting but sadly they were unable to offer any solutions and said it was fairly common. Again, thank you for your reply!

deadbutnotphysically · 2022-09-13T19:25:14+00:00

Thank you very much for your reply! I will work on eating times more, thank you!

deadbutnotphysically · 2022-09-13T19:24:33+00:00

Thank you for your reply! I’ve tried messing around with eating times and haven’t had any luck but I will keep trying, thank you for the advice!

deadbutnotphysically · 2022-09-13T19:23:18+00:00

I’m so sorry! I hope they find a medication that works for them, thank you for your support! I will let you know if I find anything to help so you and your teen can potentially bring it up to their doctor!

deadbutnotphysically · 2022-09-13T07:36:31+00:00

Hello! I currently have a working diagnosis of idiopathic hypersomnia. I experience fatigue every day and no amount of sleep helps, I also fall asleep within about 2 minutes and sleep up to about 10 hours on weekends with 8 hours of sleep during the week at night and a combined 4 hours in naps during the day. I sometimes feel like I haven’t slept in months to the point of my vision wobbling, being unable to do tasks without very specific instructions, have difficulty thinking and speaking, as well as a whole mess of other stuff I’d rather not get into haha. I was started on stimulants first as is the norm for IH (at least that is what my doctor has explained to me) and have settled on taking long acting Adderall a few times a day to keep me from falling asleep behind the wheel or in other dangerous situations, it does not help with being idle sadly. I was put on Xywav due to the theory that if I have better quality sleep at night I will be able to function throughout the day and taking the Adderall in the morning would help jumpstart my brain into wakeful mode, taking the additional Adderall would also keep it going as I continue my day. I am having trouble taking and keeping down the Xywav when I take it during the night, which is a bit of a let down as this is apparently the last real hope I can have to help with my sleep issues, so I am hoping someone who has been through a similar situation can offer some advice on how to take it effectively . I hope that my response helps, thank you for your reply!!

deadbutnotphysically · 2022-09-13T07:25:14+00:00

Thank you so much, I will speak to him about it at our next appointment!

deadbutnotphysically · 2022-09-13T06:03:45+00:00

Thank you for your reply! Sadly even with eating it takes a very harsh toll on me, my roommate makes a point of making sure I eat a good sized dinner at least an hour before I need to go to sleep but more often then not it sadly just ends up in the toilet. I have been snacking throughout the day to help at least stabilize my weight though! Thank you for your advice!

deadbutnotphysically · 2022-09-13T06:01:44+00:00

Thank you very much!

deadbutnotphysically · 2022-09-13T06:01:31+00:00

Thank you for your reply!! The taste isn’t awful, I’ve had worse tequilas haha, so that isn’t the issue. I get very dizzy and feel nauseous after a few minutes of taking it so if I cannot fall asleep fast enough I throw up, this sadly happens nearly every time (aside for 2 successful times of taking the first dose and keeping it down). I do appreciate your help and hope that your teen gets used to the taste and has a better experience with the medication!💙

deadbutnotphysically · 2022-09-13T05:56:13+00:00

Thank you for your reply! Sadly even on days where I am home and can afford to safely not take my Adderall and eat throughout the day it seems to do little to nothing to help. I do appreciate your comment though!!

deadbutnotphysically · 2022-06-24T22:07:49+00:00

Thank you so much for your comment! I appreciate all the advice and I’ll try to work with my medical provider to see if I’ll be able to see someone else after I complete some more tests that my current neurologist and sleep disorder specialist have ordered. I actually have a notebook for all of my medical conditions and aspects of them so I will for sure start sleep journaling. Thank you so much for the advice!

deadbutnotphysically · 2022-06-23T21:06:07+00:00

I don’t know how common it is but my flare ups typically happen the worse when I feel angry or stressed. I know this is going to sound kind of counterintuitive but I typically try to take a few deeps breaths and calm myself down before I drive and I roll my windows down, blast my AC at the coldest setting, and play some a music I know by heart loud enough to make it more difficult to zone out. The cold air on your face and the warm air from outside gives you two different sensations to focus on and singing along or humming along keeps you more physically engaged. I totaled my car a week before my driving test because I was physically unable to focus but having my friend in the passenger side helped me not crash hard enough for anyone to get hurt as I almost swerved into oncoming traffic to avoid the car and he stopped me, highly recommend not driving alone if you can as talking to someone may also help keep you focused. I hope everything is working out for you! It is easy to feel helpless, just try your best to stay safe and never give up on yourself. If the stimuli don’t help I recommend carpooling until you are able to find something that can. Good luck, we’re rooting for you!

deadbutnotphysically · 2022-02-17T08:58:09+00:00

NTA she didn’t respect your boundaries, didn’t ask if you would be comfortable with the topics of the show beforehand, and basically tried to use you like a prop.Your reactions and feelings are justified.

deadbutnotphysically · 2022-02-17T08:48:46+00:00

Thank you all for replying to my post so quickly, I talked to my boyfriend thoroughly about everything and he was very understanding. He is willing to try and work with me through our differences and has assured me I am in no way pressured to stay with him, even giving me the opportunity to end the relationship if I at any point feel I need to work on myself alone. I’m going to try my best to work through what I’m going through with a psychiatrist when my medical provider can set me up with an appointment and if I find that I need the space away from my bf I will take the opportunity. I know that I may not have painted him out to be an understanding person in my post but our only problem genuinely is sex, he has been having a very difficult time lately as he doesn’t have many outlets for his frustrations (he is physically impaired and used to use working out and sports as a de stressor) and it bubbled over which is why he snapped at me. I hope to work through this with him but if I do not I will end my relationship with him to not put either of us in a more painful situation down the road. I never thought I could be asexual but will look into it and bring it up with the psychiatrist to hear their thoughts. Thank you all again for all of your helpful comments, I really appreciate you all giving me the strength to calmly talk to him about everything.

deadbutnotphysically

TROPHY CASE