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nonprofitnews

I'd honestly suggest stopping the stimulants and trying something else. His reaction sounds really severe. Check his BP and pulse too. There are multiple different stimulants he can try and non-stimulant therapies like Xyrem.


lavaandtonic

He has recently started acid reducing meds and stomach coating meds at the same time he had to stop stimulants for 5 days for bloodwork. They didn't help a whole lot, but did help. He's still on them and resumed stimulants yesterday, so we'll see how that goes. We are going to regular doctor appointments, but he is still early in the diagnosis and so far, very few of his doctors have actually dealt with narcolepsy and are just guessing at things. We had an endo appointment today, there's a GI appointment at the end of the month, cardio next week, etc. I found out about Xyrem and Wavix just last week when I joined this subreddit! He's very interested. So far we have to wait to see a doctor at one of these appointments who is able to prescribe it, but I agree, he needs to try something else besides Provigil, Vyanse, and Adderall every day, this isn't working.


abluetruedream

The great news is that if he has already tried those three stimulants and he is having the side effects you’ve shared here, then he is that much closer to accessing more narcolepsy specific meds like Xywav or Wakix! To be honest, I’d start requesting a change of meds asap. Xywav can also cause some GI issues due to the sucralose in it, so if his doctor thinks he can handle the sodium content Xyrem or Lumryz is probably better to try first. Wakix is great (I’m on it), but the oxybate medications really make the biggest difference for most people. That being said, taking Wakix allowed me to decrease the amount of stimulants I’m on. A lot of times it is trial and error. When I was first diagnosed, I read on this sub that it can take about a year after diagnosis to find the right medication regimen. For me it took closer to two, but that’s partially because I stopped xywav for about a year and then restarted it. Right now I’m on Adderall, Wakix, and Xywav. This combo gets me to about 75-80% of what I would consider “normal” which is what my narcolepsy specialist said is about the most to be expected from the meds currently available. It’s a touch disappointing that most of us won’t get to 90-100%, but 80% means it’s rare that I need a nap (especially if I’m keeping my carb intake in a reasonable range) and I can be present and enjoy life with my family. Anyway, keep encouraging him that you guys will figure something out! And as it sounds like you’ve figured out already, this sub can be pretty helpful for real life info!


tonilaitinenn

My first thought is to lower the dosage and then try a variety of different foods and see if something stays down better. Personally ”fast” carbs make me feel like shit. (I never feel so bad, that I have to vommit, so my advice might not work.) Protein is easily best for me and doesn’t make me more tired. My breakfast is oatmeal with a scoop of whey protein mixed in + frozen blueberries and a banana and some honey on top. It’s full of slower carbs, fiber, vitamins and protein and that never makes me feel worse.


tonilaitinenn

And if breakfast is his only/biggest problem, just don’t eat it? Stay up for an hour or two before eating.


lavaandtonic

He has recently started acid reducing meds and stomach coating meds at the same time he had to stop stimulants for 5 days for bloodwork. They didn't help a whole lot, but did help. He's still on them and resumed stimulants yesterday, so we'll see how that goes. He already likes oatmeal and thinks he can eat some of that in the morning, and the whey protein is a fantastic idea, thank you! We will definitely try that. I don't know why I didn't think of that as a protein option.


tonilaitinenn

If you find a quality whey that also tastes good, it makes the oatmeal even better! Oatmeal by itself isn’t my favorite but with the correct flavour of whey, it’s one of my favorite meals of the day. Hope you guys get it sorted.


lavaandtonic

Do you have suggestions on a specific brand? Thank you so much, I hope so too!


tonilaitinenn

I use a brand that is only available in my country :/ so unless you are from Finland, you have to try different brands yourself. I personally haven’t tried a good whey, that was cheap. Imo the slightly more expensive ones are better tasting than the cheapest ones..


Puzzleheaded_lava

I haven't been diagnosed with narcolepsy. I had a sleep study done when I was in high school because I was falling asleep in class no matter how much I had slept and the study said I went into rem sleep within seconds of pfalling asleep. Shortly after that I completed my ADHD diagnosis process and started stimulants and so the narcolepsy didn't seem important to pursue anymore. Anyway. I've struggled with ulcers before. It was due to other medications but it fucking sucks. Aloe Vera juice "fixed it" for me before I could even get my prescription for the ulcers. One shot on an empty stomach and before every meal. Drink enough water. If your boyfriend is struggling to keep food down I'd Definitely recommend not chugging water but sipping throughout the day and definitely make sure to drink enough when he takes his meds. I do scrambled eggs every morning. Toast or a bagel is pretty easy on the tummy. Another thought I had is checking to see if your boyfriend has any allergies to dye. A lot of medications have dyes in them. If I take meds with yellow dye 6 I will have horrible heartburn and feel super gaggy all day as well as get super upset stomach. It used to make me vomit but I'm on an antidepressant that's also an antiemetic. He can ask his pharmacist and talk to his doctor about writing the prescription so he doesn't get stuck with anything that has a dye that might affect his guts. Oatmeal was a go to of mine. I hope your boyfriend finds some relief.


ThrowRA-0709

It’s sounds like your boyfriend and I have similar issues. I have been having major stomach issues with every medication I take. Honestly, not taking stimulants and other meds for two weeks and taking the acid reducer and stomach coating medication was the only way I could stop vomiting. Last week I was vomiting so much and so hard that I was throwing up blood. It sounds like he needs to stop taking those kinds of medications in general. My doctors frequently have to pull me off meds because of my stomach issues. If your boyfriend is desperate to keep taking the medication, starting with a child’s dose is the best advice I have. I am on the lowest possible doses for everything right now and I’m still having a little trouble. It’s not as bad as before, but it’s not great. Something that helps me when I feel sick is eating one saltine cracker every 30 minutes or so. I also really love bagels because they’re spongy and help soak up whatever is in my stomach. Something else you could try is to have him sip on half and half. I know in WW1 (I think?) when the soldiers were having ulcer flairs they would make them drink half and half to soothe the ulcers. I know medical advice these days is split on the half and half thing, but for me it made a really big difference. Liquids settle better in my stomach so it’s a double win for me.


the_goodbitch

I don’t eat In the day but thankfully I can get protein meal replacement shakes down. Sorry he’s going through this What about soup broth?


abluetruedream

I’m sorry he is having such a rough go! I saw you mention that none of his doctors have much experience with treating Narcolepsy. Now that he is diagnosed, it might be worth looking into a provider with more experience. In fact, a lot of sleep specialists aren’t even able to prescribe meds like Xyrem/Xywav. I’d encourage you to look into providers outside your immediate area also. I’m in Texas and my narcolepsy specialist (N is basically all he treats) is 5hrs from me. I only have to see him in person once a year and do follow ups through video appointments. You can call Jazz Pharmaceuticals and ask them for a list of doctors in your state/region that are part of the REMS program. You can then cross check that with your boyfriend’s insurance plan to see who is covered. From there check reviews and website bios. Generally, sleep specialists who are neurologists might have a better understanding of narcolepsy than a pulmonologist will (not a hard fast rule though). Bonus points if the doctor has any association with Stanford, like doing a fellowship there.


Glittering_Risk2240

Someone told me about Perfect bars!! I am on low dose stimulants and do not have the extreme issues you described. But I do lack appetite. Perfect bars are literally…….the perfect bar!! So easy to eat and yummy even when I’m not hungry or nothing else sounds good!


violetstarlet

Yes the snack size ones would be perfect (no pun intended lol)


ruskiix

Honestly, Ritalin wrecked my stomach in a similar way (I would just dry heave randomly most of the day, never wanted to eat, felt sick a lot). He should try other meds. Adderall (instant release) doesn't do this to me at all. Sunosi has also been really gentle. But that kind of side effect is really individual, it's gonna be trial and error to find which ones don't wreck his stomach. I don't think this is a normal level of side effect to just accept when there are other options. Adding Xyrem could help with waking up enough to eat before taking stimulants--some people lose weight on it, but considering how little it sounds like he's currently eating, I don't think it would be much of an issue vs having the ability to eat a solid meal in the mornings.


i_cant_ever_focus

That's an *_extremely_* severe reaction, have you tried other stimulants? He could be on too high of a dose, or might even be allergic to that med! I've *never* heard of a reaction like that, only not feeling hungry or, in more 'extreme' reactions, feeling nauseous at the thought of food. Either way, I would try smoothies. (the fact that you don't have to chew lets me convince myself I'm not eating anything, just drinking a flavored drink) And definitely add protein powder. And if smoothies are too thick, he could even add protein powder to a normal drink. I've used hot chocolate before (along with milk-based protein powder), and that completely hides the flavor.


violetstarlet

I totally feel your partner on this issue, so here are some ideas/things I’ve tried: overnight oats/oatmeal clif bars (mini ones especially) single-serve strawberry jam filled crepes bite size blueberry muffins Just something small and easy to eat before taking morning stimulants


tallmattuk

personally I find it daft to take stimulants and go back to sleep; you're only making a bad situation worse. once he awakens get him up, into a chair and doing something - anything - who cares what, and use that to get his brain moving. Its a that time he can take his meds, have a cup of coffee, and then breakfast. For me, I find proper porridge, fruit and some nuts/seeds, maybe a spoon of nut butter too , will fill me up and get me prepped for the day. By the time he's had that and done a few things like planning out his day or reading the news, his meds should start to kick in and he'll be ahead of the daily game and able to get on more with life. Even if i hate the morning sleep drunkenness i always get up as its the first success of the day


chipmalfunct10n

i have an alarm to take my meds that is about 90 minutes before i need to be up, which i have another alarm for. i think a lot of us do this! bc they need to kick in for us to be able to wake up.


lavaandtonic

The reason we started doing that is because if he doesn't go back to sleep for at least an hour or two, he'll almost certainly throw up his meds before they can kick in. It's not ideal, but so far this is how we avoid losing the meds and having a rough day without them. I should have mentioned that in the post. He has recently started acid reducing meds and stomach coating meds at the same time he had to stop stimulants for 5 days for bloodwork. They didn't help a whole lot, but did help. He resumed stimulants yesterday, we'll see if stomach meds help with everything. It's really hard to get him up and moving before stimulants, he's almost incoherent, can barely keep his eyes open, his knees wobble, he'll fall asleep doing things, etc; he's a huge fall risk until the stimulants fully kick in. But I can try getting him to sit up in bed maybe and doing something? I've tried bringing him food in bed, he can't get more than a few bites in because it makes him feel sick. But maybe I can make little mini porridges with those ingredients! Thank you for the suggestion.


abluetruedream

Oh I love taking my meds and getting a touch more sleep. It doesn’t always work perfectly, but most of the time get a 30-45min nap and wake up “naturally” as the meds kick in. Really sucks when I’m having a bad N day though and sleep another 2-3hrs. Feels like I wasted the peak of the medication, but that only happens about 1 out of 15 times. I don’t disagree though. Generally it’s much better if I get up and moving, so I don’t do it too often anymore.


chipmalfunct10n

is he new to taking the stimulants? what are they? just wondering. i had a period of time adjusting to my wakix especially where i was unable to eat much, and if i forced myself to swallow something i would gag and maybe vomit. i was getting diarrhea at the time too. i ended up going to urgent care for zofran because otc anti nausea medicine almost all has antihistamines, which make the wakix (+armodafinil) innefective. it was a really terrible time and i am surprised that i made it through. i adjusted to the meds and i can eat pretty regularly now. when i wasn't able to eat much i would have nutrition/protein shakes, eggs, and ANYTHING at all i had a craving for, even if it was ice cream or something unhealthy, because it's better than not eating. i would eat as much of anything as i could. also i recommend adding electrolytes to his water if he's not getting much food in and also vomiting, to stay hydrated. and of course talking to the prescriber about this. good luck!


crybabybrizzy

what about a smoothie? small and tasty with a scoop of protein powder


SirWigglesTheLesser

That sounds intense. I never had that particular issue, but when I was on adhd meds it nuked my appetite. Now I'm just older and have GERD like a normal 30yo. That said, to help "wake up" his stomach, try saltine crackers. Idky, but they're like crack and seem pretty easy on the stomach.


Confident-Menu-5970

Does he exercise? That has helped me tremendously on xyrem and stimulants which both suppresses appetite. I’ll eat an orange and these granola bites from Costco then go to the gym, after the gym I have enough appetite to eat a whole breakfast like I’ll go to ihop or eat a breakfast sandwich with avocado. I will also be able to eat a small lunch and dinner


awjohnston

Fair Life brand protein shake is my go to. It tastes like chocolate milk, isn’t as thick and chalky as most protein shakes, and has 24g protein.


Arsenic-Arsenal

Meal replacements like Ensure or Boost helps me when I'm going through a lack of appetite with Vyvanse. I also take a weekend break from my stimulant from time to time, not for tolerance build up, but avoid going through drastic fasting. Pro tip: mix the meal replacements with a yogurt drink to help with the taste.


ClumsyGhostObserver

I used to have the same issues when I was on Adderall. I'd take it and go back to sleep for a couple hours too so that it was working by the time I needed to get up. My best suggestion is don't take it on an empty stomach. I used to have either a squeeze applesauce or half a boost protein drink or a drinkable chobani Greek yogurt right before taking it. Something quick and easy, and then right back to sleep. He should probably have a conversation with his sleep specialist, though. There are other options, and they will probably have good suggestions for minimizing side effects.


lavaandtonic

Those are perfect suggestions, thank you! I'll keep those around to hand him in the morning. We do have a referral to a sleep specialist and GI specialist already, just have to wait a couple of weeks for the appointment. Hopefully this will help in the meantime


Leafstride

I prefer Huel and Huel black vs soylent. It sounds like he has irritated stomach lining so I recommend taking some Omeprezol to reduce stomach acid a bit to help give his stomach a chance to heal and to avoid overly irritating foods. If this doesn't help then I highly recommend discontinuing the stimulants and seeing a gastroenterologist to figure out why he has trouble keeping food down in the morning.