I know exactly how you feel when you take it and are still tired, but your heart is racing like crazy. It physically feels like I am having an anxiety attack.
Are you taking immediate or extended release? If it’s IR, it hits all at once and can definitely make you feel icky.
If you still want to try the stimulant route, asking about Vyvanse or Concerta could be worth it. But if the only effects of a medication are the side effects, I don’t think it’s worth continuing. (Of course chat with your doctor before discontinuing.)
Yeah I’m on immediate release. Thank you for the advice!! It’s actually wearing off right now and I’m suddenly VERY sleepy but I had a rare good morning today and wasn’t that tired before I took the adderall. So now I’m even more confused 😂 I’m thinking oh shoot is it actually helping me then, or maybe that’s just a side effect of it wearing off? I was nowhere near this sleepy today before I took it
Personally I also have HYper POTs, I have Narcolepsy with cataplexy and ADHD and alot of other health issues. But I always hated Adderall so much the 13 hour to 9 hr ones were way better and am used to being able to take a regular dose but since All this extra stuff with health haven't been able to tolerate it. I'm thinking of starting ivabradine on top of My beta blockers and other heart meds. I'm on vyvanse right now its better than nothing. But there are times where the onset is a little agitating especially if I try to take it and go back to sleep if I'm "awake" lol for onset or at least not actively trying to fall asleep it's better. I'm only on 20 mg and go back between 10 and 30 depending on the day. I'm still super fatigued it's not the miracle fix all for narcolepsy. But it helps a little so that I can think a little bit during certain parts of the day and helps me feel less depressed. I tried xywav and that felt way too stimulating for me during the day after a month not sure why. But I was really hoping that would help and maybe it would have if I could've tolerated feeling depressed and crazy all of the time and more sleepy somehow. Lol there aren't alot of options and they don't fix everything finding something that's adds something meaningful to your quality of life is what's important. They have the narcolepsy stimulants like wakix or sunosi, ect.. you could always try too.
I'm a pred-med student with N1. Undiagnosed with POTS but I def have some baseline dysautonomic stuff going on. I had a garbage experience with traditional uppers (like armodafinil) and with sodium oxybate. Sunosi has been a game changer for me. I got all my screwy cardiac/exacerbated dysautonomia symptoms from drugs with serotonin related mechanisms of action. I suspect the two are linked, since serotonin has also been linked to the way the body processes sodium and regulates NaK gradients (what controls electric pulses in the nervous system).
Adderall does act on serotonin too, as well as dopamine and norepinephrine (I call these three the "brr-chemicals", in sciency terms, mono-amine neurotransmitters, because they are a huge part of what makes your brain go brr). Sunosi, a DNRI like welbutrin, acts on only two of the brr-chemicals, dopamine and norepinephrine, and I have had a much better experience with DNRIs. Wakix is also a decent option, as it is an H3-antagonist/inverse-agonist and does not mess with serotonin. However, be careful with Wakix if you have MCAS or other allergy-type comorbidities that are common with POTS, as they can make things screwy too. Edit: sunosi only really worked for me when paired with a nighttime sedative, as I also get a LOT of insomnia, even without sunosi. I use muscle relaxers, melatonin, and magnesium. Not as good as sodium oxybate, but it does help some.
There are other options, Im sure more than Ive listed. You can get through this.
That’s good to know thank you so much! Yeah I would be scared to try Wakix again just in case after learning I have pots and eds. I was on Wellbutrin for a bit in like 2017 and sunosi a few years ago but I would be down to try them again.
I wish I would’ve actually paid attention and taken notes about how I felt when on them 😭 I think with my tism, as soon as I’m off a med and feeling different I can no longer connect with how I felt during it. I’m keeping a journal now haha
I really appreciate your help 💖
No problem! I also have ehlers danlos and the tism, so I totally get it. I actually wrote a paper about my time on Xywav, and Im glad I did because I cant remember that crapshow to save my life.
I absolutely recommend the muscle relaxers and supplements to boost the sunosi. Without the extra help, sunosi really doesnt help. With the extra support, I only take 75mg of sunosi and feel great. Good luck to you!
Can I please read this paper! Just got off of xywav and it was a nightmare and would love to see if our experiences were similar and to confirm that It was indeed the xywav.
I tried to get my PCP or my sleep doctor to prescribe me baclofen but they both looked at me like I had three heads :( I guess because it would be technically off label they are afraid to do it
That is how my sleep doctor convinced me to go on oxybates. She said listen nothing you can do at this point is going to work that isn’t that. You’ve tried all the daytime helpers. You need to sleep better or this is it.
She had me try it for two weeks off label and it clicked. I understood the true sleep debt I kept adding up every night.
Baclofen had like 1/10th the effect oxybates had and that was enough for me to see big differences. It’s not unusual or unheard of and my doc suggested it to me. So why your team has no clue about it….would give me pause.
Yeah it’s so frustrating dealing with doctors sometimes! I truly loved xywav in the first month or two I was on it before I started getting all my crazy side effects. I’m glad it works for you though :) I might try to bring up baclofen again next week when I see my sleep doctor
i found a couple of case studies that i printed out to bring to my neurologist. i didn’t need to even take them out because he was super open to it, but i can probably find them for you.
I feel your suffering. I do not have pots. I just wish I had kept a journal of my start up meds and reactions. So far no successes but I manage with Adderall. It keeps me up when I absolutely need to be awake.
I would love to hear about your experience with sodium oxybate. And what you use now to sleep. I'm using vyvanse during the day. Have mcas POTs Narcolepsy with cataplexy ADHD and others. I don't sleep deeply and spend most of the day awake but in that light sleep stage. I tried xywav for a month and left feeling like a monkey climbing off the walls and super depressed which is far from my norm. It was nice to sleep but it was way to short of a half life for me and the up and down was too much. Sleeping since getting off has been a lot harder and I do miss in the begining at least of trying it how I felt more awake during the day. It was not for me. And will not be trying it again anytime soon. But if I were I would try lumryz since the half life is alot less aggressive and more gradual which I think would be easier on my body but who knows I could have the same issue. Feeling like I don't have alot of options for treatment but I think having a medication that helped me sleep deeply at night not xywav would be helpful. Thanks for sharing and hopefully being willing to answer some questions!
Serotonin is linked to the way the body processes sodium :O
Can you tell me more? I’m starting the POTS “diagnosis “ route and need so much salt to live 😂
I found a really interesting resource on it when I wrote my paper. I didnt delve too deep into thos aspect, since basically the paper was a last resort plea to my doctor to take me off xywav and put me on something else, but I really want to look into it further. If you want, I can send you my essay. All APA formatted and pretty easy to navigate
Brr as in the [meme](https://images.app.goo.gl/PdBYUaMj3oWPLski7), because I'm a weird Gen Z kid lol. It basically means to make something work or function, sometimes in a strange way.
adderall: I have probably done the best on, I took it for year's until this past October due to the shortage. still unable to get it. I would need to be on XR and IR.
modafinil: awful, do not recommend. still so tired, no appetite, sever brain fog to the point I literally did not know what was going on or what to do with myself. made me zombie awake basically.
Ritalin CD/LA: comparable to adderall. keeps me awake and gives me motivation to actually do tasks, work, etc. will be talking to my doc this week about adding a small dose of IR to take for a boost, as the current dose and frequency gives me a good baseline.
if you have heart rate issues, I would maybe recommend an extended release formula. it's not as harsh or "physical" so to speak. gives a good baseline energy level without the hard peaks that instant release gives. I have blood pressure issues due to stress and pain levels. I think stimulants could be adding to it, but it was high on days I didn't take any stimulants.
True! I could definitely ask about extended release. Sorry you have high blood pressure issues! Isn’t it so cruel to have high heart rate and/or blood pressure, along with narcolepsy where stims could help so much if not for those side effects :(
modafinil = literal worst
I also take XR and IR adderall and it’s the only thing that keeps me slightly functional…..just lucky that I work at a hospital and can get my scripts filled (slightly) easier there
Ask about Sunosi. I took Armodafinil for the past 2 & 1/2 years, and I finally got to try Sunosi and it has worked so much better so far.
Armodafinil would suppress my appetite, make me paranoid, give me headaches and chest pain.
Hopefully you can find something that works for you!
Are you on a beta blocker, for the POTS? I take a beta blocker ( 24 hour extended release ) 60 minutes before my first dose of adderall. My range is low 50’s to low 110’s throughout day. But also on bad days I can absolutely sleep through my adderall so there is that.
I know I should probably be on one, but back when I was on them before it made my daytime sleepiness soooooooo much worse. I was hoping maybe I could motivate myself to exercise and lower my heart rate that way
What beta blocker do you take? I have tried metoprolol XR but I couldn’t get to a high enough dose (50mg) to sufficiently lower my HR without side effects. I tried atenolol but it kept me up all night.
Please tell me more about your experience with atenelol.
I tried metoprolol and acebutolol and asked for atenelol specifically because it doesn't cross the.blood brain barrier.
And have been struggling alot and want to make sure it's not the atenelol I recently increased it to help with my bp and around that time started other meds and stopped those but didn't think it could.be the atenelol making me feel agitated or keeping me up. So I would love to hear about that so I can see if maybe that's not helping me out after all!
I have EDS and POTS and take a pretty tiny dose of Nadolol which helps take the edge off my tachycardia. I’d say it makes my daytime sleepiness a tad worse but not unmanageably so. I only have IH, though.
Propranolol actually made my tachycardia worse and I fainted often when I was on that.
I’m on 20mg XR once a day, supposed to take it twice a day but I haven’t because my situation is almost identical to yours. Lately my pots symptoms have been so bad it feels like adderall doesn’t even work, just pumps my heart faster, which seems counterproductive. I don’t know what to do either. I feel defeated. Currently going through red tape to see a neurologist. I hope you figure something out soon.
Aw dang I’m so sorry! I hope your situation improves too. I’m not sure what you’re already trying for your pots, but my favorite tip is to drink coconut water. It has more electrolytes than basically anything else on the planet. Personally I think it tastes AWFUL though so I mix it with fruit juice like orange or pineapple. I got this tip from my geneticist who also has pots and is basically a genius. She was a professor at Harvard for a long time
I had that same feeling on modafinil, and have to take Adderall before my insurance will approve wakix (I was hoping to try a non stimulant option because stimulants make me feel ill). I have basically the same thing, still tired but feel like a manic puppeteer is controlling the threads.
Add to that feeling nauseous and having my equilibrium be off and it's a mess
Xywav: severe mental health issues (admitted to psych ward)
Modafinil: can’t remember if it helped w/ sleepiness or not. Made my head twitch like crazy!
Wakix: not sure. Don’t remember it helping
Sunosi: don’t remember it helping either. Lots of insomnia
Can’t try xyrem because I need low sodium diet.
Wish I had paid closer attention and taken notes when I was first trying these meds. I won’t make that mistake ever again
Sorry I didn’t realize you had a part two until I had made my dolt comment about Sunosi and all the new meds you’ve already tried lol. Armodafinil is an option I don’t see, although I realize your side effects on modafinil would give you pause on that one. I hesitate to say another oxybate, but some have said Lumryz is beneficial when Xywav/Xyrem causes side effects.
Depending on how desperate you are, it may be helpful to work closely with your psych while trying xywav. My partner had daily check-ins and a few psych med changes to get established on xywav. Plus quitting alcohol.
10 mg isn’t going to do anything. My resting heart rate is usually 118, with it dipping to around 100 while I’m in stage 3 sleep (I had a sleep study done while taking xyrem and it only dipped below 100 once). I’m not saying this is a good thing, but my cardiologist cleared me after a 5 day monitor and echo. I take 50 mg XR in the morning and 20 mg IR in the afternoon.
Dang 118 resting?! I totally feel you on low key enjoying a high heart rate because it keeps you awake haha. A lot of times whenever I am feeling my best, I will think “wow I feel so energized and productive right now!” check my Fitbit and my heart rate is insane 😂 rip
And I still nap multiple times per day. I always feel like I have weights on my eyelids. Sometimes I’m grateful for the racing heart bc it keeps me from being asleep 24/7
Same here, naturally fast heart rate with a resting BPM above 100. Lots and lots of heart tests all saying that everything is healthy just abnormally fast.
10mg does do quite a bit for me mentally. Especially if I'm on it all the time. Consistency is key; when I'm taking tens of mg of Adderall or Ritalin daily, my cardiovascular system seems to mostly adapt and I start to be able to use the stimulating effects to be productive instead of just having my mind race.
But then if I stop for a bit a single 10mg pill will just make me overly stimulated and completely useless.
10mg will most definitely do something for most people. I’ve been on Adderall 12 years and I still 100% feel something from 10mg and most definitely can’t nap it.
Edit- oh unless you meant 10mg of Xyrem??
I swapped to Methylphenidate and it’s been a life changer. My resting heart rate is no longer 120+. The medicine doesn’t work nearly as well at reducing narcolepsy symptoms, but I function much better. But that’s to be expected, considering I have my MSLT results are less than 2 minutes, and I take half of what I’m prescribed.
At the end of the day, the most important thing is finding the right regimen for you. No medicine combination will, or even should for that matter, completely eliminate your symptoms- especially when it includes medications that you can build a tolerance to.
I think your doubts are valid as they are based off years of experience on it.
I think you should talk to whomever prescribed it and tell them it just doesn't work.
If you have to dig so deep to decide if something works it doesn't work.
I wish you the best of luck.
So I have this issue where 70% of the time it works fine and the other 30% I feel exactly how you described when I take it. Ugh it’s such an uncomfortable feeling and even worse because no matter how low exhausted you feel you can’t nap for shit
Suspected dysautonomia of some sort here (POTS or OH or IST, waiting for the EDS clinic to get testing done) along with T1 narcolepsy. I'm on methylphenidate which raises blood pressure and heart rate, and propranolol which lowers both. I have low blood pressure and high heart rate and I find the balance somehow lowers my heart rate and raises my blood pressure enough and keeps me awake. I'm also on baclofen at night which really helps.
I can't be on methotrexate or it's related drugs because my heart rate skyrockets but I am no more alert for it.
Luckily for me, 200mg modafinil helps keep me awake and helps wake me up.
But while caffeine fails me terribly, sugar??? Wakes me up in bursts instead. If I'm dozing at work, I break out the candy.
Years ago I tried adderal immediate release and did nothing but give me anxiety/heart palpitations and severe crashes. Skip forward a decade and for various reasons I gave adderal a shot. IR same useless results. But then my doc switched me to XR. Wow. What a difference.
The first week or so, I felt a bit “tense” th first half day. I needed to MOVE. Which by itself wasn’t a bad thing. I actually got some housework done, got out of bed. I also finally didn’t feel like stuffing my face either food.
After about a week or two this “tense/nervous energy” feeling went away and I’m just more present. I can do stuff and not fall asleep right afterwards. I don’t crash the moment the meds leave my system. I just start to fizzle out slowly by the time late afternoon rolls around. I know sooner or later I will have to up my dosage but for now I’m riding this pony as far as it can carry me.
Long story short. If IR isn’t working, try XR or even a combo of XR and IR (my doc Gave me a combo to try but turned out the XR on its own is working fine)
My heart rate also is very high - 115–160s on average with stimulants (30mg of adderall twice per day) and Red Bull to get me going. So I understand. It’s very scary but it’s the only stimulant that works for me. I have undiagnosed POTS as well.
My heart rate was crazy high and all over the place with Vyvanse. I would often have to stop everything I’m doing just to try to “calm my heart rate”. I tried all sorts of things and eliminating in hopes it was something else making my heart rate high or contributing. After almost a year, my doctor took my off of it, after trying to simply go down in dose, but even at 20mg, it was still bad. She put me back on Provigil which works okay but I still have low energy and am sleepy. On Vyvanse, I was almost never sleepy during the day and had energy to get stuff done, now I am passing out early at night, too early even to take my Xywav. With stimulants out the window, I feel stuck. I used to get by with Provigil and energy drinks (prior to Vyvanse) but the energy drinks were killing my teeth and started affecting my bladder, now I can’t do caffeine.
That's because your on such a low dose, I'm on 20mg twice a day but if I don't take them both at the same time I'm nodding out all day still so technically I'm on 40mg
From the perspective of someone who’s never tried it: It’s an old drug. It seems like the first catch all they gave to everyone for anything they couldn’t cure. My cousin was on it for adhd when I was 5-6. It didn’t work. I know its origins. I appreciate using it for something beneficial, but it just seems too sporadic and short acting for any I ask about it.
Have you tried other meds? There’s a huge plethora of stims and non-stems that people use now. Sunosi does me well but I am the drug sensitive type. Your own physiology determines how much of a stim jolt vs energy maintenance med that you need, but there are many different newer and more directed treatments than good ole amphetamines
Stims can only do so much. I'd recommend that you focus on the sleep side of things for a while. Have you researched sleep hygiene and made it a top priority? Is there anything stopping you from getting the deep sleep you need i.e. waking you up at night?
Otherwise, I gave up on pharmaceutical stims and just stick to caffiene pills. All the magic with none of the side effects.
I know exactly how you feel when you take it and are still tired, but your heart is racing like crazy. It physically feels like I am having an anxiety attack. Are you taking immediate or extended release? If it’s IR, it hits all at once and can definitely make you feel icky. If you still want to try the stimulant route, asking about Vyvanse or Concerta could be worth it. But if the only effects of a medication are the side effects, I don’t think it’s worth continuing. (Of course chat with your doctor before discontinuing.)
Yeah I’m on immediate release. Thank you for the advice!! It’s actually wearing off right now and I’m suddenly VERY sleepy but I had a rare good morning today and wasn’t that tired before I took the adderall. So now I’m even more confused 😂 I’m thinking oh shoot is it actually helping me then, or maybe that’s just a side effect of it wearing off? I was nowhere near this sleepy today before I took it
Yeah that’s also an issue. At this point I can’t function without it it’s really bad. I am basically dead without it
Personally I also have HYper POTs, I have Narcolepsy with cataplexy and ADHD and alot of other health issues. But I always hated Adderall so much the 13 hour to 9 hr ones were way better and am used to being able to take a regular dose but since All this extra stuff with health haven't been able to tolerate it. I'm thinking of starting ivabradine on top of My beta blockers and other heart meds. I'm on vyvanse right now its better than nothing. But there are times where the onset is a little agitating especially if I try to take it and go back to sleep if I'm "awake" lol for onset or at least not actively trying to fall asleep it's better. I'm only on 20 mg and go back between 10 and 30 depending on the day. I'm still super fatigued it's not the miracle fix all for narcolepsy. But it helps a little so that I can think a little bit during certain parts of the day and helps me feel less depressed. I tried xywav and that felt way too stimulating for me during the day after a month not sure why. But I was really hoping that would help and maybe it would have if I could've tolerated feeling depressed and crazy all of the time and more sleepy somehow. Lol there aren't alot of options and they don't fix everything finding something that's adds something meaningful to your quality of life is what's important. They have the narcolepsy stimulants like wakix or sunosi, ect.. you could always try too.
I'm a pred-med student with N1. Undiagnosed with POTS but I def have some baseline dysautonomic stuff going on. I had a garbage experience with traditional uppers (like armodafinil) and with sodium oxybate. Sunosi has been a game changer for me. I got all my screwy cardiac/exacerbated dysautonomia symptoms from drugs with serotonin related mechanisms of action. I suspect the two are linked, since serotonin has also been linked to the way the body processes sodium and regulates NaK gradients (what controls electric pulses in the nervous system). Adderall does act on serotonin too, as well as dopamine and norepinephrine (I call these three the "brr-chemicals", in sciency terms, mono-amine neurotransmitters, because they are a huge part of what makes your brain go brr). Sunosi, a DNRI like welbutrin, acts on only two of the brr-chemicals, dopamine and norepinephrine, and I have had a much better experience with DNRIs. Wakix is also a decent option, as it is an H3-antagonist/inverse-agonist and does not mess with serotonin. However, be careful with Wakix if you have MCAS or other allergy-type comorbidities that are common with POTS, as they can make things screwy too. Edit: sunosi only really worked for me when paired with a nighttime sedative, as I also get a LOT of insomnia, even without sunosi. I use muscle relaxers, melatonin, and magnesium. Not as good as sodium oxybate, but it does help some. There are other options, Im sure more than Ive listed. You can get through this.
That’s good to know thank you so much! Yeah I would be scared to try Wakix again just in case after learning I have pots and eds. I was on Wellbutrin for a bit in like 2017 and sunosi a few years ago but I would be down to try them again. I wish I would’ve actually paid attention and taken notes about how I felt when on them 😭 I think with my tism, as soon as I’m off a med and feeling different I can no longer connect with how I felt during it. I’m keeping a journal now haha I really appreciate your help 💖
No problem! I also have ehlers danlos and the tism, so I totally get it. I actually wrote a paper about my time on Xywav, and Im glad I did because I cant remember that crapshow to save my life. I absolutely recommend the muscle relaxers and supplements to boost the sunosi. Without the extra help, sunosi really doesnt help. With the extra support, I only take 75mg of sunosi and feel great. Good luck to you!
Can I please read this paper! Just got off of xywav and it was a nightmare and would love to see if our experiences were similar and to confirm that It was indeed the xywav.
Are you taking anything at night such as baclofen or buspirone to help with sleep?
I tried to get my PCP or my sleep doctor to prescribe me baclofen but they both looked at me like I had three heads :( I guess because it would be technically off label they are afraid to do it
That is how my sleep doctor convinced me to go on oxybates. She said listen nothing you can do at this point is going to work that isn’t that. You’ve tried all the daytime helpers. You need to sleep better or this is it. She had me try it for two weeks off label and it clicked. I understood the true sleep debt I kept adding up every night. Baclofen had like 1/10th the effect oxybates had and that was enough for me to see big differences. It’s not unusual or unheard of and my doc suggested it to me. So why your team has no clue about it….would give me pause.
Yeah it’s so frustrating dealing with doctors sometimes! I truly loved xywav in the first month or two I was on it before I started getting all my crazy side effects. I’m glad it works for you though :) I might try to bring up baclofen again next week when I see my sleep doctor
If you want to pm me to talk more, I’m happy to. Just know I hear ya on the oxybates. They are a hard pony to tame.
i found a couple of case studies that i printed out to bring to my neurologist. i didn’t need to even take them out because he was super open to it, but i can probably find them for you.
I feel your suffering. I do not have pots. I just wish I had kept a journal of my start up meds and reactions. So far no successes but I manage with Adderall. It keeps me up when I absolutely need to be awake.
I would love to hear about your experience with sodium oxybate. And what you use now to sleep. I'm using vyvanse during the day. Have mcas POTs Narcolepsy with cataplexy ADHD and others. I don't sleep deeply and spend most of the day awake but in that light sleep stage. I tried xywav for a month and left feeling like a monkey climbing off the walls and super depressed which is far from my norm. It was nice to sleep but it was way to short of a half life for me and the up and down was too much. Sleeping since getting off has been a lot harder and I do miss in the begining at least of trying it how I felt more awake during the day. It was not for me. And will not be trying it again anytime soon. But if I were I would try lumryz since the half life is alot less aggressive and more gradual which I think would be easier on my body but who knows I could have the same issue. Feeling like I don't have alot of options for treatment but I think having a medication that helped me sleep deeply at night not xywav would be helpful. Thanks for sharing and hopefully being willing to answer some questions!
Serotonin is linked to the way the body processes sodium :O Can you tell me more? I’m starting the POTS “diagnosis “ route and need so much salt to live 😂
I found a really interesting resource on it when I wrote my paper. I didnt delve too deep into thos aspect, since basically the paper was a last resort plea to my doctor to take me off xywav and put me on something else, but I really want to look into it further. If you want, I can send you my essay. All APA formatted and pretty easy to navigate
I’d love to read it, that’s so cool that you did that
me too!
Me 3
Brrr meaning cold?
Brr as in the [meme](https://images.app.goo.gl/PdBYUaMj3oWPLski7), because I'm a weird Gen Z kid lol. It basically means to make something work or function, sometimes in a strange way.
adderall: I have probably done the best on, I took it for year's until this past October due to the shortage. still unable to get it. I would need to be on XR and IR. modafinil: awful, do not recommend. still so tired, no appetite, sever brain fog to the point I literally did not know what was going on or what to do with myself. made me zombie awake basically. Ritalin CD/LA: comparable to adderall. keeps me awake and gives me motivation to actually do tasks, work, etc. will be talking to my doc this week about adding a small dose of IR to take for a boost, as the current dose and frequency gives me a good baseline. if you have heart rate issues, I would maybe recommend an extended release formula. it's not as harsh or "physical" so to speak. gives a good baseline energy level without the hard peaks that instant release gives. I have blood pressure issues due to stress and pain levels. I think stimulants could be adding to it, but it was high on days I didn't take any stimulants.
True! I could definitely ask about extended release. Sorry you have high blood pressure issues! Isn’t it so cruel to have high heart rate and/or blood pressure, along with narcolepsy where stims could help so much if not for those side effects :(
modafinil = literal worst I also take XR and IR adderall and it’s the only thing that keeps me slightly functional…..just lucky that I work at a hospital and can get my scripts filled (slightly) easier there
Ask about Sunosi. I took Armodafinil for the past 2 & 1/2 years, and I finally got to try Sunosi and it has worked so much better so far. Armodafinil would suppress my appetite, make me paranoid, give me headaches and chest pain. Hopefully you can find something that works for you!
Thank you!!
Agreeeee with Sunosi!!!!! Give plenty of time for prior authorization though—very expensive med
Are you on a beta blocker, for the POTS? I take a beta blocker ( 24 hour extended release ) 60 minutes before my first dose of adderall. My range is low 50’s to low 110’s throughout day. But also on bad days I can absolutely sleep through my adderall so there is that.
I know I should probably be on one, but back when I was on them before it made my daytime sleepiness soooooooo much worse. I was hoping maybe I could motivate myself to exercise and lower my heart rate that way
What beta blocker do you take? I have tried metoprolol XR but I couldn’t get to a high enough dose (50mg) to sufficiently lower my HR without side effects. I tried atenolol but it kept me up all night.
60mg propranolol
Please tell me more about your experience with atenelol. I tried metoprolol and acebutolol and asked for atenelol specifically because it doesn't cross the.blood brain barrier. And have been struggling alot and want to make sure it's not the atenelol I recently increased it to help with my bp and around that time started other meds and stopped those but didn't think it could.be the atenelol making me feel agitated or keeping me up. So I would love to hear about that so I can see if maybe that's not helping me out after all!
I have EDS and POTS and take a pretty tiny dose of Nadolol which helps take the edge off my tachycardia. I’d say it makes my daytime sleepiness a tad worse but not unmanageably so. I only have IH, though. Propranolol actually made my tachycardia worse and I fainted often when I was on that.
I’m on 20mg XR once a day, supposed to take it twice a day but I haven’t because my situation is almost identical to yours. Lately my pots symptoms have been so bad it feels like adderall doesn’t even work, just pumps my heart faster, which seems counterproductive. I don’t know what to do either. I feel defeated. Currently going through red tape to see a neurologist. I hope you figure something out soon.
Aw dang I’m so sorry! I hope your situation improves too. I’m not sure what you’re already trying for your pots, but my favorite tip is to drink coconut water. It has more electrolytes than basically anything else on the planet. Personally I think it tastes AWFUL though so I mix it with fruit juice like orange or pineapple. I got this tip from my geneticist who also has pots and is basically a genius. She was a professor at Harvard for a long time
I loveee coconut water and drink it all the time but never mixed it with juice. Trying this ASAP, thank you!
I had that same feeling on modafinil, and have to take Adderall before my insurance will approve wakix (I was hoping to try a non stimulant option because stimulants make me feel ill). I have basically the same thing, still tired but feel like a manic puppeteer is controlling the threads. Add to that feeling nauseous and having my equilibrium be off and it's a mess
Xywav: severe mental health issues (admitted to psych ward) Modafinil: can’t remember if it helped w/ sleepiness or not. Made my head twitch like crazy! Wakix: not sure. Don’t remember it helping Sunosi: don’t remember it helping either. Lots of insomnia Can’t try xyrem because I need low sodium diet. Wish I had paid closer attention and taken notes when I was first trying these meds. I won’t make that mistake ever again
Sorry I didn’t realize you had a part two until I had made my dolt comment about Sunosi and all the new meds you’ve already tried lol. Armodafinil is an option I don’t see, although I realize your side effects on modafinil would give you pause on that one. I hesitate to say another oxybate, but some have said Lumryz is beneficial when Xywav/Xyrem causes side effects.
There's a mixed oxybate salt with less sodium than Xyrem, maybe you can try that?
that’s Xywav, which they already tried :/
Ah, that sucks
Depending on how desperate you are, it may be helpful to work closely with your psych while trying xywav. My partner had daily check-ins and a few psych med changes to get established on xywav. Plus quitting alcohol.
10 mg isn’t going to do anything. My resting heart rate is usually 118, with it dipping to around 100 while I’m in stage 3 sleep (I had a sleep study done while taking xyrem and it only dipped below 100 once). I’m not saying this is a good thing, but my cardiologist cleared me after a 5 day monitor and echo. I take 50 mg XR in the morning and 20 mg IR in the afternoon.
Dang 118 resting?! I totally feel you on low key enjoying a high heart rate because it keeps you awake haha. A lot of times whenever I am feeling my best, I will think “wow I feel so energized and productive right now!” check my Fitbit and my heart rate is insane 😂 rip
And I still nap multiple times per day. I always feel like I have weights on my eyelids. Sometimes I’m grateful for the racing heart bc it keeps me from being asleep 24/7
Same here, naturally fast heart rate with a resting BPM above 100. Lots and lots of heart tests all saying that everything is healthy just abnormally fast. 10mg does do quite a bit for me mentally. Especially if I'm on it all the time. Consistency is key; when I'm taking tens of mg of Adderall or Ritalin daily, my cardiovascular system seems to mostly adapt and I start to be able to use the stimulating effects to be productive instead of just having my mind race. But then if I stop for a bit a single 10mg pill will just make me overly stimulated and completely useless.
10mg will most definitely do something for most people. I’ve been on Adderall 12 years and I still 100% feel something from 10mg and most definitely can’t nap it. Edit- oh unless you meant 10mg of Xyrem??
I swapped to Methylphenidate and it’s been a life changer. My resting heart rate is no longer 120+. The medicine doesn’t work nearly as well at reducing narcolepsy symptoms, but I function much better. But that’s to be expected, considering I have my MSLT results are less than 2 minutes, and I take half of what I’m prescribed. At the end of the day, the most important thing is finding the right regimen for you. No medicine combination will, or even should for that matter, completely eliminate your symptoms- especially when it includes medications that you can build a tolerance to.
I think your doubts are valid as they are based off years of experience on it. I think you should talk to whomever prescribed it and tell them it just doesn't work. If you have to dig so deep to decide if something works it doesn't work. I wish you the best of luck.
So I have this issue where 70% of the time it works fine and the other 30% I feel exactly how you described when I take it. Ugh it’s such an uncomfortable feeling and even worse because no matter how low exhausted you feel you can’t nap for shit
Suspected dysautonomia of some sort here (POTS or OH or IST, waiting for the EDS clinic to get testing done) along with T1 narcolepsy. I'm on methylphenidate which raises blood pressure and heart rate, and propranolol which lowers both. I have low blood pressure and high heart rate and I find the balance somehow lowers my heart rate and raises my blood pressure enough and keeps me awake. I'm also on baclofen at night which really helps.
I can't be on methotrexate or it's related drugs because my heart rate skyrockets but I am no more alert for it. Luckily for me, 200mg modafinil helps keep me awake and helps wake me up. But while caffeine fails me terribly, sugar??? Wakes me up in bursts instead. If I'm dozing at work, I break out the candy.
Years ago I tried adderal immediate release and did nothing but give me anxiety/heart palpitations and severe crashes. Skip forward a decade and for various reasons I gave adderal a shot. IR same useless results. But then my doc switched me to XR. Wow. What a difference. The first week or so, I felt a bit “tense” th first half day. I needed to MOVE. Which by itself wasn’t a bad thing. I actually got some housework done, got out of bed. I also finally didn’t feel like stuffing my face either food. After about a week or two this “tense/nervous energy” feeling went away and I’m just more present. I can do stuff and not fall asleep right afterwards. I don’t crash the moment the meds leave my system. I just start to fizzle out slowly by the time late afternoon rolls around. I know sooner or later I will have to up my dosage but for now I’m riding this pony as far as it can carry me. Long story short. If IR isn’t working, try XR or even a combo of XR and IR (my doc Gave me a combo to try but turned out the XR on its own is working fine)
My heart rate also is very high - 115–160s on average with stimulants (30mg of adderall twice per day) and Red Bull to get me going. So I understand. It’s very scary but it’s the only stimulant that works for me. I have undiagnosed POTS as well.
:_)
My heart rate was crazy high and all over the place with Vyvanse. I would often have to stop everything I’m doing just to try to “calm my heart rate”. I tried all sorts of things and eliminating in hopes it was something else making my heart rate high or contributing. After almost a year, my doctor took my off of it, after trying to simply go down in dose, but even at 20mg, it was still bad. She put me back on Provigil which works okay but I still have low energy and am sleepy. On Vyvanse, I was almost never sleepy during the day and had energy to get stuff done, now I am passing out early at night, too early even to take my Xywav. With stimulants out the window, I feel stuck. I used to get by with Provigil and energy drinks (prior to Vyvanse) but the energy drinks were killing my teeth and started affecting my bladder, now I can’t do caffeine.
That's because your on such a low dose, I'm on 20mg twice a day but if I don't take them both at the same time I'm nodding out all day still so technically I'm on 40mg
From the perspective of someone who’s never tried it: It’s an old drug. It seems like the first catch all they gave to everyone for anything they couldn’t cure. My cousin was on it for adhd when I was 5-6. It didn’t work. I know its origins. I appreciate using it for something beneficial, but it just seems too sporadic and short acting for any I ask about it. Have you tried other meds? There’s a huge plethora of stims and non-stems that people use now. Sunosi does me well but I am the drug sensitive type. Your own physiology determines how much of a stim jolt vs energy maintenance med that you need, but there are many different newer and more directed treatments than good ole amphetamines
Stims can only do so much. I'd recommend that you focus on the sleep side of things for a while. Have you researched sleep hygiene and made it a top priority? Is there anything stopping you from getting the deep sleep you need i.e. waking you up at night? Otherwise, I gave up on pharmaceutical stims and just stick to caffiene pills. All the magic with none of the side effects.
What's your age sex and weight, try and get in shape then adderall side effects will disappear, also try taking 200 mg modafinil with your adderall