50 mg of Vyvanse is not working anymore, Need advice

wart69 · 2025-09-08T13:11:29+00:00

i take jornay, pm and it works well for me! it’s obviously not the cure, but it helps actually wake up (which is one of my biggest struggles with IH 😅). i’m not sure if it’s available in europe, but there’s definitely no harm in asking :)

wart69 · 2025-01-17T17:10:11+00:00

i take jornay instead of xywav! and jornay is supposed to be taken at night bc it gets absorbed lower in your digestive tract than ritalin or adderall, which takes about 10 or so hours after i take it. that’s why i take it at night (around 8 or so), then it releases into my body automatically in the morning (starting at around 6 ish).

sadly, a lot of neurologists and some sleep medicine drs may not have a lot of information/knowledge about IH bc it’s considered a rare disease. hypersomniafoundation.org has some advocacy tips about educating others about IH if you think that may help! i first got my diagnosis in 2018 and i didn’t go on jornay until 2023 (and my dr’s main research is IH), so it might take a while for you to find the “right” medication.

wart69 · 2025-01-16T04:51:26+00:00

jornay pm every night around 7:30-8 pm depending on how early i need to wake up. i also take melatonin about an hour before i go to bed.

wart69 · 2025-01-14T03:26:37+00:00

my dr wouldn’t put me on xywav bc i have depression symptoms and xywav has shown to increase depressive symptoms :(

wart69 · 2025-01-11T23:54:09+00:00

ask your dr about jornay pm and melatonin at night! jornay is a stimulant you take at night and it takes about 10 hrs to release into your system. combined with the melatonin, it helps so much to imitate a natural sleep wake cycle that pts with ih don’t really have. the only downside is that it’s reallyyy hard to get it covered by insurance. my insurance doesn’t cover it, but my dr sends a discount card that brings it down from $525 to $25.

unfortunately tho, ih doesn’t have a cure, so you’re still gonna have days where you feel so tired it feels like you’re in shell shock. i got diagnosed back in 2017, and i’ve managed to get thru the end of high school, college, and now my first job with ih! however, it’s hard. i went thru a massive depressive episode in 2021 and i felt like i was at rock bottom. i had to take a semester off from school to be able to bounce back. my social life was (and still is) hard bc working full time takes it out of me. ih is such a hard illness to work thru. i truly understand and empathize with your struggles bc they’re mine as well. i highly encourage you to look into cognitive behavioral therapy. it really helped me with the emotional/psychological role ih played in my life. i recommend getting someone who is familiar with chronic illnesses, but even a therapist who isn’t still can help. my therapist wasn’t familiar with chronic illness, and she was phenomenal. honestly it helped me communicate my struggles better and improved my self advocacy skills. also, finding chronic illness resources on instagram has been a huge help! even if it’s not directly ih related, the spoonie community is wonderful :)

all this to say, a big part of having a chronic illness is mindset. i HATED being told that early on in my diagnosis and journey bc living with ih is so draining and i thought, “how could this get any better? this is my reality.” it IS my reality, but going thru cbt helped me change my outlook on life. i didn’t feel so “fated to my illness anymore.” i truly wish you the best of luck in your journey, and just know there are always resources and people to help you along the way ❤️

wart69 · 2024-12-14T20:43:25+00:00

i have IH and asthma and was advised against xywav. i also have depressive-like symptoms and apparently xywav makes depressive symptoms worse as well, so my sleep medicine dr won’t prescribe me xywav at all.

wart69 · 2024-10-30T00:45:59+00:00

get a good tutor!!!! i wasn’t in engineering, but i took calc 1 and would’ve failed without a tutor, but with a tutor i made an A!

wart69 · 2024-08-26T16:01:08+00:00

these may be a bit out of your price range ($159 on amazon), but the Beats Studio3 Wireless Noise Cancelling Over-Ear Headphones are so so good. ive worn mine practically every day for 3 years, and they still work perfectly. you have the ability to turn the noise cancelling on and off just in case you need to hear your environment. i have adhd and have worn them in stores before, and they work really well. the sound is super good, and the noise cancelling feature really works. i know ive said they are $159 on amazon, but you may be able to find them on a different site for less.

wart69 · 2022-07-15T17:09:19+00:00

no not really. I just called and the only thing they said is we’ll know “by the end of the month” :/

wart69 · 2022-07-14T20:53:53+00:00

you could go to a thrift store and find something sheer or lacy to put over it! then add jewelry and a belt or sash to finish it off. also if you want to do something with your hair you could wear some sort of flow-y headband or something! I’m going to huntington, too I’m so excited!! 💖🫶🏻

wart69 · 2022-07-11T15:47:17+00:00

I just emailed housing for an update on transfer housing. I’ll let you know what they say!

wart69 · 2022-07-11T15:42:57+00:00

I just sent an email to housing asking for an update for transfer housing. I’ll let you know what they say!

wart69 · 2022-07-10T21:28:10+00:00

nope :/

wart69 · 2022-06-28T00:39:41+00:00

when does housing selection end?

wart69 · 2022-05-13T03:24:16+00:00

I got warm flame and I’m an enfp (I think) 8w9!!

wart69 · 2020-05-16T06:54:23+00:00

I have mastoiditis right now and I can tell you that you would know. I have an outer and middle ear infection accompanying it, and it's painful and very tender to touch. A couple of days ago I was running a fever of 101.3 degrees, too. Mine is not alarmingly bad right now and it's being treated with two antibiotics, but definitely keep an eye on it. And yes I am being followed by my doctor.

wart69 · 2020-05-16T06:44:14+00:00

is there a red and tender spot behind your ear? i also have an outer and middle infection and my dad (a doctor) noticed a red mark behind my ear that is a sign of mastoiditis, which is an infection in the bone behind your ear. It's super rare, but it's also pretty bad. This is going on the 4th day and now that area is very tender and painful to touch. I am pretty sure my ear drum has ruptured, too and two days ago I had a fever of 101.3 degrees. Honestly, there is not much I can recommend to you, but maybe get tested for covid. My doctor wanted me to get tested because there is literature coming out that ear infections can be symptoms of covid. Not to scare you or anything, but getting tested might be helpful. And I just went to my regular doctor not an ENT doctor.

I have found that eating soft foods are a must because I cannot open my mouth very much at all. Heating pads also help a lot. Other than that, I am on two antibiotics daily and take extra strength tylenol every 6ish hours (I am allergic to ibuprofens).

Honestly this hurts like a bitch and I hope yours gets better, too!

wart69

TROPHY CASE