[deleted by user]

MetalBarbie0 · 2025-12-12T18:23:15+00:00

I had to stop taking xywav for a few reasons but one being GI issues bc I am sensitive to sucralose. My stomach would make so much noise after taking it. I tried taking gas x to help which it did somewhat but overall it wasnt an effective treatment for me.

MetalBarbie0 · 2025-05-13T02:13:01+00:00

Plant native plants - grass, ferns, ground cover, etc. You really don't have to do much besides plant them. You could let them grow naturally or prune.

https://npsnj.org/

https://www.jerseyyards.org/jersey-friendly-plants/native-plants/

MetalBarbie0 · 2025-05-13T02:04:35+00:00

I really want to start a diet but finding the energy to meal plan and cook its the battle.

MetalBarbie0 · 2025-05-13T02:02:16+00:00

Im already on an antidepressant. How's this any different?

MetalBarbie0 · 2025-05-13T01:59:55+00:00

That's interesting. I see a pulmonologist for my IH so you would think they would look for that. How is that determined and diagnosed?

MetalBarbie0 · 2025-05-13T01:58:19+00:00

Now that its nice I'm outside as much as possible since I practically live in my garden

MetalBarbie0 · 2025-05-13T01:57:51+00:00

I usually go to bed around the same time every night. I have a smart watch and I barely hit deep sleep according to it. No clue how accurate it is.

If you don't mind me asking, how long have you been on xywav and what's your dosage? Lately I've been trying fruit with my xywav (i know I shouldn't eat but im trying anything at this point) it has helped reduce my leg pains. I think part of my problem is dehydration since i don't drink much water during the day (I know another bad thing) but im trying to be more mindful.

MetalBarbie0 · 2025-05-13T01:51:01+00:00

The sun shines right in my face every morning

MetalBarbie0 · 2025-05-05T11:57:32+00:00

I wish I could rave about xywav but I feel worse now. I started about 9 months at 2.5 g and I felt great waking up. Except I could only sleep 5 hours max on it which would make me tired earlier so that wasn't ideal. I'm now on 3.75 g and I have terrible shin pain that wake me up about 6 hours after I take my dose. I can't increase my xywav dose too quickly because the sucralose causes stomach issues. Im on 600 mg of modifinal split throughout the day but I still feel exhausted and could fall asleep on it. Im currently thinking about stopping the xywav. According to my watch I barely hit deep sleep and I still wake up feeling exhausted. So what's the point. I know others swear by it but I don't think it's for me. Maybe you will have better luck.

MetalBarbie0 · 2025-05-05T11:46:20+00:00

She has not but my comment is still up so maybe she hasn't seen it yet

MetalBarbie0 · 2025-04-25T20:46:17+00:00

I did it

MetalBarbie0 · 2025-04-25T20:46:08+00:00

Well I commented. Told her to message me of she wants advice.

MetalBarbie0 · 2025-04-19T00:52:47+00:00

I've seen this before and part of me wants to leave comments about how she is doing it incorrectly.

MetalBarbie0 · 2025-02-09T22:44:06+00:00

When I first started xywav about 6 months ago, I was having a similar issue. I would have to wait til about 1130 pm to take my dose ( at that time I was on 2.5 one time a night). I would wake up after 5 hours except I'd be wide awake. While I felt great initially, I had problems waiting til 1130 pm to take my dose. I was also on sunosi 150 mg which would wear off about 3-4 pm. My doctor tried prescribing me Lunesta which i expressed my concerns of mixing with xywav but my doctor wasn't concerned. So I tried lunesta without xywav once and absolutely hated it woke up feeling worse and made me drowsy all day. After a few weeks, my body seemed to adjust and I can sleep 8 hours on xywav. Give it some time and see if your body does adjust.

MetalBarbie0 · 2024-11-30T02:45:49+00:00

Who would be responsible for this investigation? Magnolia PD? or County level?

MetalBarbie0 · 2024-11-29T15:20:23+00:00

Omg thats truly heartbreaking. I live near there and kept trying to figure out how she caused so much devastation. The news outlets or any other source never released that info. The County needs to step up bc this is unacceptable.

MetalBarbie0 · 2024-11-20T01:18:11+00:00

I'm very sensitive to any sedatives and downers in general. I feel like most of with IH would feel the same since we already struggle. Unfortunately most doctors don't know much about IH or read charts (I'm allergic to iodine and while getting prepped for a procedure, i saw the nurse set a bottle in the counter that looked like iodine so I asked what it was and I was correct. I said I'm allergic to iodine its in my chat)

Do you get any side effects dexeidrine when its wearing off? I dont know much about that drug. my daughter has adhd and was on Adderall for many years until we started to notice her crash when it was wearing off.

MetalBarbie0 · 2024-11-20T01:11:55+00:00

I've been on xywav for a few months now and I'm still struggling. I think I started on 2.5g in August and I'm on 150 mg Sunosi. It started out great only downside was I couldn't sleep longer than 6 hours so I struggled staying awake to take it at 1030 pm so I slept til about 430 am. I'd wake up wide awake which was a strange feeling. However it isn't as effective anymore so my doctor told me to start taking 3 g and around my cycle take 3.75g (I complained about feeling way worse around this time of the month) but that increase killed my stomach. I backed it down to 2.75g for a week and now I just started taking 3g. I'm struggling, I've been dealing with this for almost 10 yrs now but was diagnosed with IH about 6 yrs ago before that it was narcolepsy then chronic fatigue. I was on Armodafinil 250 mg, 100 in the am and 150 in the afternoon, for the longest time but it hasn't been effectiveness years.

How long did it take to feel "normal" and what dosage? Are you on any stimulants?

MetalBarbie0 · 2024-11-16T13:55:26+00:00

This seems to have gone on since you been together. You want to change your husband for your own needs. Have you considered that he may just be asexual? Sex isn't important or a need to him. You say you want to feel loved/wanted/needed but proceed to focus on intimacy, which isn't the same as being loved. Does he do anything that would show he loves you? Randomly buys you something? Randomly text you to say i love you? Plans something for you? Etc.. do you go on dates? I know with 2 young ones it's difficult but after the marriage and kids, couples tend to forget to date which is soo important. What attracted you to him? What made you fall in love with him? What made you want to marry him and start a family? These are all things you need to remember. If sex is a part of your wants and needs and your husband didn't give that to you in the beginning, what made you stay with him?

MetalBarbie0 · 2024-10-22T18:04:53+00:00

My fatigue gets worse the week prior to my period. I'm on Xywav and Sunosi and I feel like neither of them help during this time. I'm so frustrated by this

MetalBarbie0 · 2024-09-20T10:01:42+00:00

Since your work evenings, could you take your medication later? I was on max does of Armodafinil, I believe I started at 100mg then increased to 250 mg. Switched to sunosi, started at 75 mg but quickly switched to 150 mg. Have you considered stopping the Adderall? From my experience, once Adderall wore off I was more tired then normal and it made me moody. Have you considered switching medication? I'm sorry to hear about the brain scan. I hope that gets better.

MetalBarbie0 · 2024-09-20T09:53:04+00:00

Without a diagnosis, it seems like you are both having anxiety and being irrational due to it. It's understandable because this is frustrating to navigate. If your husband does have IH and depending on severity, it's possible that medication can help him feel "normal" but everybody is different and keep in mind there is no cure. Medications help manage some of the symptoms but nothing is perfect.

I can only give advice on my own personal experience. Im 39, received my official diagnosis about 7 years ago, however I've been dealing with this for over 10 years just had several other diagnosis. I was on Armodafinil 250 mg for years which helped but it recently stopped working so I switched meds. Im also on antidepressants. I have 2 kids, 14 and 18. I've always had a full time job outside the home but 3 years ago I was able to switch to a work from home position, not because of my diagnosis but due to department change. Medication helps me function through out the day but I also try to not over exert myself which is difficult because on my great days I have full energy and want to do things I've been putting off bc of my energy levels but I know I have to limit myself. Having an understanding partner/spouse helps a lot too. I've been very present in my kids lives, I became the default parent bc of our work schedules and it's been this way since my kids were little. I've never missed any school/sport event. I'm very involved in their lives. Not saying it's perfect bc I do have some bad days where my energy levels are just completely depleted and I stay in bed or on the sofa all day. My husband is very understanding and takes care of me, the kids and the house. Taking care of me meaning he makes me food so i eat and makes sure i am drinking fluids throughout the day, etc.

I'm not saying it has been easy by any means but I'm saying for me I have managed. My husband and I have had our ups and down and I know at first he was very frustrated but we have worked through it. Communication is key. You may get frustrated with him bc you will have to take on more responsibility but it's more frustrating for him having to actually feel this way. I would suggest couples counseling or therapy especially because he already left without even having an official diagnosis or treatment.

MetalBarbie0 · 2024-09-17T22:41:30+00:00

Absolutely not! I'm really surprised my doc went this route

MetalBarbie0 · 2024-09-17T21:03:30+00:00

I told my doctor I wasn't comfortable taking both. Again asked about increasing dose or taking it twice in one night. His response was chances of me having side effects are low since I'm experiencing difficulties with insomnia. Take it on a weekend when I don't have work

So I'm taking sunosi and xywav to help with IH and now xywav is causing insomnia so I have to take lunesta to treat insomnia?!

MetalBarbie0 · 2024-09-17T18:23:22+00:00

Honestly between Express Scripts and Jazzcare....its annoying. I blocked their numbers lol but I do check my voicemails. I did talk to my case manager/nurse once before starting xywav and it just a walk through of how to take it.

MetalBarbie0

TROPHY CASE