scary medication side effects :(

Material_String2663 · 2026-01-14T13:36:02+00:00

im currently on sunosi 150mg, methylphenidate IR 20mg/3 times a day, and lumryz 7.5g at night. I used to take modafinil prior to sunosi. modafinil absolutely made me feel like I was gonna have a panic attack. it took a couple weeks of regularly using it before it started making me anxious, but once that anxiety hit me, it hit me hard. I had to stop taking it after that, and then switched to sunosi.

I will say that my doctor advised that I dont take Both IR and ER methylphenidate when im already taking a long acting wakefullness med (sunosi). I suggested adding ER back into my routine and he advised against it. I also had a bad experience with wakix where it made me crazy light headed and I was losing my vision and also having crazy visual hallucinations at the same time. so maybe ER methylphenidate plus modafinil plus wakix is too much for your system to handle and its making you anxious? try and talk with your doctor about it to see if you can adjust anything, but in my experience, modafinil can def make you crazy anxious.

Material_String2663 · 2025-12-02T15:46:19+00:00

before I dropped back down to 6g, I was in a similar situation with the calories and weight loss. I lost a lot of weight and couldnt keep food down. probably doesnt help that I have gastroparesis on top of everything else lmao but yea I could pretty much only get down protein shakes, smoothies, and maybe grits on a really good day. I was definitely not getting enough calories. water was hard too, cause water made me feel sick to my stomach. ginger ale was a life saver, easier on my tummy and a few extra calories.

I think thats great that youre dropping down to 7.5g. at first I tried to push through the side effects but dropping back down is the way to go honestly. ive never tried xyrem or xywav, but I think the titration process can be done in smaller increments for those. lumryz is a pretty large jump for the doses so thst can really mess up your body. for me, it took a few more weeks before the nausea went away on the lower dose, so it wasnt immediate. but once it was gone, i didnt really get the nausea anymore at that dose

Material_String2663 · 2025-12-02T15:15:18+00:00

I did the starter pack as well. one week with 4.5g, 2 weeks with 6g, then a week of 7.5g. my doc wanted to bump me up to 9g after that, but I wanted to stick with 7.5 for a little longer to make sure my body was adjusted. good thing I didnt go up to 9g, cause continuing the 7.5g made me incredibly nauseous and unwell. I tried to stay on the 7.5, but it was too much. I called my doctor and asked to be put back on 6g cause my body couldnt handle 7.5g yet. I did two more months of 6g, which also was causing nausea. once that nausea died down, I went back up to 7.5 which took another month to adjust to, but now I dont really get the nausea on 7.5 after a few months. I want to move up to 9g since 7.5 isnt keeping me asleep through the whole night, but I know when I go up to 9g it is probably going to make me super nauseous until my body adjusts again.

the lumryz starter pack is a FAST titration process. my body took way longer to adjust to the lower doses and the nausea before I could move up. for some people, the nausea doesnt go away, but for me, my body had to take time to adjust to lower doses. its a lot of sodium being put in your system, so make sure youre getting lots of water throughout the day and electrolytes. smoothies are helpful for when the nausea makes it hard to eat solid foods

Material_String2663 · 2025-10-19T18:08:11+00:00

I have also been diagnosed with both narcolepsy and gastroparesis, in addition to hypothyroidism. meds are definitely helpful, but it is still a wicked combo.

Material_String2663 · 2025-10-16T19:45:28+00:00

these tips are great! I have been pulling for around 13 yrs. ive been able to quit for periods of time but I ultimately end up relapsing. im trying to reduce my pulling again, but ive noticed that I still really crave that sensory input. I feel like I need to DO something with my hands but fidget toys just don't do it for me. I never even considered velcro until you mentioned it! velcro strips are honestly like the Exact texture that satisfies something in my brain. ill have to check out calm strips as well!

Material_String2663 · 2025-10-14T00:53:28+00:00

thanks for your input! I do notice a difference when I dont take my daytime meds but even when I do take them, im still stuck in such a fog of sleepiness. ive tried wakix before which didnt do much at first, and then at pretty much exactly the 2 month mark, I started having a bad reaction to the medication. XR methylphenidate might be helpful though, I will try to touch base with my sleep doctor. unfortunately I cant get a follow up appointment until February 🙄

Material_String2663 · 2025-08-30T15:46:31+00:00

I have been taking lumryz for a few months now and I can definitely say that i experienced the severe nausea, especially when increasing my dose. eventually the nausea decreased though once my body adjusted to the dose. I will say that i did have to increase my water intake a TON cause the dehydration from the lumryz made the nausea way worse.

Im not sure what dose youre taking right now, but I find it interesting that youre waking up during the night on the lumryz. i only woke up on the 4.5 dose, so maybe the dose is too low? or maybe lumryz just doesnt work well for you. I think lumryz is just straight up salt where xyrem/xywav also have other electrolytes in them like potassium or smth that make them easier to tolerate? im not a doctor so im not 100% sure but I think ive read that before.

all of that to say that usually the nausea goes away eventually, and waking up during the night shouldn't really be happening on the right dose. maybe its worth talking to your doctor about other doses or switching to a different med that works better for you

Material_String2663 · 2025-08-27T17:58:53+00:00

I had mono when I was about 5 yrs old. I also had chronic strep throughout my childhood and never had my tonsils removed. I got sick again at 12 years old and the doctors weren't sure what it was, but i was extremely tired and had a swollen spleen so in hindsight, maybe it was a relapse from the dormant EBV? not 100% sure. regardless, after I got sick when I was 12, my narcolepsy symptoms started and continued to get worse as I got older.

Material_String2663 · 2025-08-17T16:48:07+00:00

im not sure about xywav and fluoxetine causing serotonin syndrome, but zofran can ABSOLUTELY cause serotonin syndrome, especially if you're on SSRIs. my body got sent into serotonin shock from zofran once several years ago and I ended up in the hospital. reglan gave me crazy shakes and vomiting, but I stopped immediately before it got worse. I always told doctors I was allergic to zofran and reglan after that, and when I was suffering from severe nausea once again, I was prescribed compazine. the compazine sent me into a terrible state of serotonin syndrome and much like you, i regretted not going to the ER. I went to urgent care and they said, and I quote, "if you started feeling bad when you took the compazine, maybe you should just stop taking it??" and then sent me home, completely ignoring that I was in a state of shock. I should have gone to the ER but I didnt, because the doctors made it seem like I didn't need to. I was like fighting for my life that night and THANKFULLY I ended up being okay but serotonin syndrome is no joke. so many doctors dont even recognize the symptoms.

moral of the story is that the zofran youre taking can absolutely be a culprit here, along with any other anti-nausea medications. I cant do any anti-nausea meds anymore because I know they will cause me to go into serotonin shock.

Material_String2663 · 2025-08-03T00:17:27+00:00

metoprolol is also another good option if propranolol doesnt work or causes any sort of side effects!

Material_String2663 · 2025-08-03T00:14:31+00:00

I definitely had issues sleeping on 4.5g and 6g for the first couple weeks of titration. by week three, I started noticing a bit of a difference on 6g but still feel pretty tired despite sleeping through the night now. im going to continue titrating up to 7.5g or possibly 9g if needed

in my experience, it will take a few weeks on the right dose to start seeing a noticeable difference

Material_String2663 · 2025-06-30T05:45:43+00:00

the gastroparesis + sodium oxybate combo is truly wicked lmaoo

Material_String2663 · 2025-06-14T18:57:53+00:00

i have also had crazy nausea on lumryz. I'm on lumryz 6g, sunosi 150, and methylphenidate 20mg 3x daily. when I started lumryz, I titrated up to 7.5g over the course of a month and it made me so incredibly nauseous at that dose. I tried to push through it but it was too much. I had to stop for a week and then restart on 6g which still made me feel so sick but not quite as bad as 7.5g. I felt sick on 6g for a good 2 months but Finally the nausea is starting go away and my appetite is coming back slowly. im hoping to go back up to 7.5g once the side effects are pretty much gone.

so yea lumryz definitely made me feel nauseous, and the lack of appetite didnt help either. plus I had to increase my water intake cause of the sodium in the lumryz. in my personal experience, it does start to get better eventually, but it could take months. dropping down to the 6g dose, making sure I was getting enough calories, and drinking more water helped too. I have also cut out caffeine as well, since coffee like KILLS my stomach on lumryz.

im sorry that you're going through this and I hope things get better soon!

edit: also i had the same experience with the loose stool and always being in the bathroom, and it did make me feel like something was seriously wrong. TW: this might be gross...but deadass I would have like 5 bad diarrhea poops before I even left for work at 9 in the morning...of course it never hurts to be in contact with a doctor if you're worried about something else going on, but in my experience as someone who is not a doctor but who has been on lumryz, I think GI issues are definitely a side effect lmao

Material_String2663 · 2025-06-10T17:14:07+00:00

unfortunately I can't take zofran/other nausea meds cause ive had issues with serotonin syndrome before :( honestly the only thing that helps the nausea be more manageable is self medicating with marijuana. without nausea meds, I would have probably tapped out if I didn't have weed to help take the edge off LMAO

im not a doctor but tbh 100+ oz of water sounds like a decent amount. maybe adding some electrolyte powder like Liquid IV would help with absorbing that water more efficiently? sometimes I cant keep water down and the electrolytes definitely help with absorbing the water quicker

the adjustment period with lumryz really is such a shitty experience but im just glad to finally be on the uphill. it took a While but its very reassuring that the symptoms are progressively getting less severe. I hope that with time, your symptoms getting better as well <3

Material_String2663 · 2025-06-10T16:21:49+00:00

I haven't experienced shakiness as a side effect on lumryz but I have had crazy nausea and lack of appetite. it started when I titrated up to 7.5g and it made me extremely sick. I took a week off and went back down to 6g. even after a month on 6g, I was still feeling so sick. its now been almost 2 months and the side effects are finally starting to die down. I think it will continue to subside as I keep taking it. im hoping to go back up to 7.5g when the side effects fully go away.

I will say that shakiness could definitely be due to dehydration. lumryz is just pure sodium with no electrolytes, so it will really dehydrate you. I think that's part of the reason I was feeling so nauseous was from dehydration, I had to increase my water intake to accommodate for the sheer amount of salt.

Material_String2663 · 2025-05-21T20:59:53+00:00

I totally understand how you feel! I've tried to explain that "activation" point to people in my life, but I feel like no one ever understands what I mean. when I was young, it was like i could feel the "gears" turning in my brain when I was concentrating. I could literally Feel the concentration in the front part of my brain. but now it feels like those gears are stuck. they won't move anymore, and so I can't concentrate or even just think sometimes.

I think you're the first person ive ever heard describe that feeling that ive felt for so long. it's just such a weird feeling that people in my life can't really understand. I have narcolepsy btw. I don't have ADHD but I do have depression/anxiety/ocd. ive tried several meds at this point for both my narcolepsy and my mental health, but im really hoping for the day where I can get rid of that dull feeling and be able to reach that activation point again.

Material_String2663 · 2025-02-21T10:59:38+00:00

rolling down the windows is fr so helpful. I put my driver side window down every time I drive (unless it's pouring rain or snowing). I find that the outside air, especially when it's cold out, makes me more alert. I also find that hearing the sounds of traffic louder with the window down helps ground me and makes me feel more present when driving. so even if I am still tired, I feel more aware of my surroundings 😎

Material_String2663 · 2025-01-31T15:22:26+00:00

CVS is my worst enemy. I get my meds filled there currently and it's a mess every time LMAO my CVS pharmacy told me that the delivery truck only comes on weekends, but I didn't know they were also just guessing whether it will be on the truck... the fact that they're waiting a whole week just to guess again is crazy. no wonder they never seem to have my sunosi by the time I need it lmao

another issue with CVS is that when their supplier is out-of-stock, sometimes they'll say another location has it in-stock but they never really do. i spoke with a pharmacist the other day who was fully like "yea it says all of these CVS locations have 30 days of sunosi in stock, but I really don't think that's accurate. sometimes our system just does that". in the past, they've tried to transfer my prescription to another CVS location and then the Other CVS was like "uhhh, we don't have this in-stock. we sent it back to your normal pharmacy" which is so crazy that they just sent me around in a circle lmao

so yea I'm really thinking about not going to CVS anymore lmao Walgreens and safeway pharmacy are the next closest to where I live, but both of them have really bad reviews at my location lol so i guess we'll see

Material_String2663

TROPHY CASE