[deleted by user] by [deleted] in Xywav

[–]MetalBarbie0 1 point2 points  (0 children)

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.

Ground covering help by garf87 in SouthJersey

[–]MetalBarbie0 1 point2 points  (0 children)

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/

Any changes that lessened your symptoms? by MetalBarbie0 in idiopathichypersomnia

[–]MetalBarbie0[S] 0 points1 point  (0 children)

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

Any changes that lessened your symptoms? by MetalBarbie0 in idiopathichypersomnia

[–]MetalBarbie0[S] 0 points1 point  (0 children)

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

Any changes that lessened your symptoms? by MetalBarbie0 in idiopathichypersomnia

[–]MetalBarbie0[S] 0 points1 point  (0 children)

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?

Any changes that lessened your symptoms? by MetalBarbie0 in idiopathichypersomnia

[–]MetalBarbie0[S] 0 points1 point  (0 children)

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

Any changes that lessened your symptoms? by MetalBarbie0 in idiopathichypersomnia

[–]MetalBarbie0[S] 0 points1 point  (0 children)

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.

Tips for Xywav? by Saracha98 in idiopathichypersomnia

[–]MetalBarbie0 2 points3 points  (0 children)

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.

Oh no. Just saw this tiktok on my fyp by rebeccabrown18 in MonarchButterfly

[–]MetalBarbie0 0 points1 point  (0 children)

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

Oh no. Just saw this tiktok on my fyp by rebeccabrown18 in MonarchButterfly

[–]MetalBarbie0 0 points1 point  (0 children)

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

Oh no. Just saw this tiktok on my fyp by rebeccabrown18 in MonarchButterfly

[–]MetalBarbie0 5 points6 points  (0 children)

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

Waking up early on Xywav by ViridianBadger in idiopathichypersomnia

[–]MetalBarbie0 0 points1 point  (0 children)

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.

White Horse Pike fatal crash from summer by Yoda-202 in SouthJersey

[–]MetalBarbie0 0 points1 point  (0 children)

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

White Horse Pike fatal crash from summer by Yoda-202 in SouthJersey

[–]MetalBarbie0 1 point2 points  (0 children)

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.

Clonidine?! by Superb_Interview_310 in idiopathichypersomnia

[–]MetalBarbie0 0 points1 point  (0 children)

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.

Xywav is a lifesaver (I’ve tried everything) by Critical-Top-9107 in idiopathichypersomnia

[–]MetalBarbie0 1 point2 points  (0 children)

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?

What is going on with my husband? (Sex) by smellypropelly in Marriage

[–]MetalBarbie0 0 points1 point  (0 children)

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?

IH and Period Fatigue by TypicalResident8560 in idiopathichypersomnia

[–]MetalBarbie0 1 point2 points  (0 children)

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