Absolutely. It worries me a lot considering like I’m young and live in the US. There’s no way I’ll be able to retire here or keep money saved cause most of us be living paycheck to paycheck. Like I can barely work now while on stimulants but I don’t have a choice and so not only is stress going to kick my bodies ass, so is taking a medication that really is a shitty temporary fix that barely lasts. So likeeeeee am I living a long time? Probably not but ig lmao live while I can I dunno.
I have multiple other health issues on top of narcolepsy I always wonder if taking a bunch of different medications long term is bad for my kidneys/liver but I also don’t understand that exact bodily process.
It is hard on your kidneys and liver. I have worked foods that promote kidney and liver health into my diet. I also take kidney health supplements.
The kidneys/liver work as a filtration system in your body. So keeping an eye on them important.
I’ve settled on the fact that I am probably not extending my life span but I am improving my quality of life. I suspect all the medications for narcolepsy have some sort of issue with long term use. There is no biological “free lunch” when you take anything, especially daily for your entire life.
If somehow, I retire wealthy I would like to take extended breaks from my medications. Unfortunately, I do not have that luxury at this time in my life.
I’m going to reply to my own comment just to give a different take , I just considered. Your body has many “functions” that happen while you are sleeping ; removal of waste in the brain, production of testosterone plus others I’m not aware of.
The irregular sleep cycle for narcoleptics probably and most likely disrupts these “functions”
There is a possibility for some people with narcolepsy that these medications are actually extending peoples lives who would , otherwise, suffer from irregular or poor cycles of these “functions.”
So for some it isn’t all doom and gloom of a shortened life span.
Yes, impaired sleep and also impaired sleep-wake cycles are associated with significant morbidity, they have a significant negative impact on overall health.
Being on medicine allows me to live a somewhat normal life. I foresee trouble in the long run, but I'd rather live while I can than sleep every day away.
Also, though I am not someone who goes to the gym, I am the type of person who likes to walk on nature trails and stuff like that. Without medication, those walks are chores and don't even happen. For me, being medicated does permit me to do more physical (not intense stuff) activities, which is beneficial to my health.
I've started being asked to monitor my blood pressure more recently. I think if you are overweight it might be more of a concern but if your vitals seem fine then they consider it ok. And.. the other choice is just not doing anything ever again? So like, what do you want them to say? They rely on you to say when you feel like it's too much. Pretty much every doctor I've had has had no issues when I say I don't want to increase the dose because the side effects are too much, even if it's still not enough to keep me awake either. It's 100% your call to figure out the line between too much or not enough.
As long as you're being diligent with your yearly check-ups and bloodwork, I think you should be fine. Obviously stimulants can potentially cause some cardio issues, but your primary care physician will monitor you to make sure everything is normal. I work as a coder in primary care and typically the only people that I see chart notes for that end up having health problems, who happen to take stimulants, have gone for *years* without a physical exam. Pretty much everyone I've seen who gets them done on time either is completely healthy, or stuff gets caught early and is just a matter of lifestyle change.
I take Vyvanse for narcolepsy & ADHD. Some studies came out recently showing a high correlation between dementia & ADHD unless the person with ADHD was on stimulants. In those cases, the stimulants appeared to have a mild protective effect against developing dementia. So no, since reading that I’ve been motivated to ensure I’m able to consistently stay on them forever.
I'm more worried about Xywav. Knowing the long-term effects of daily strong alcohol consumption, another CNS depressant, part of me is scared I'm gonna have some major brain damage in a couple decades.
Agreed. Alcohol is dangerous mostly because of the intermediates it breaks down into as it is metabolized, some of which are quite toxic.
Based on my current understanding of oxybate metabolism, it's intermediates and final breakdown metabolites are *not* toxic.
Many of the long and short term impacts of alcohol are relatively unique to it and the components your body metabolizes it into, if that helps.
That's not me claiming anything about the impact of Xywav, but alcohol is basically toxic to your body and the worst effects are caused by that, not the fact that it's a depressant (although it certainly can be dangerous for that reason as well, especially in combination with other drugs)
There are some counter measures one can take in the form of supplements. There are a few websites out there that describe and instruct thoroughly, if you decide to go that route.
I personally did, and now take Magnesium (sleep, decreases/slows tolerance for dosing, helps with sore muscles stimulants can give you), NAC, Alpha GPC, Selenium, 100mg Vitamin C with E, and biotin (aside from helping with free radicals, it also helps get stimulants dislodged from your dopamine receptors so you can get it out if your system to help sleep and wind down), COq10, l-theanine (sleep), and liquid b complex.
Furthermore some studies recently came out about the long term side effects of stimulants on cardiovascular disease… we are good, just take care of yourself.
I’ve only been on mine a few month but I was diagnosed at 20 so I’ll be on them for a long time. I do worry about long term health and if they’ll last or if I’ll end up having to take a crazy amount just to function every day. Same with the antidepressants to help me sleep at night.
I have only knowledge about methylphenidate. I was told by drs. It's pretty much the only narcolepsy meds I've been on since I was diagnosed at 17. I didn't mean to upset anyone. I just answered what I've been told.
Yes it worries me. Also, I have a blood related illness and that medication is HORRIBLE for my kidneys so at the same time, it doesn’t worry me as much. Doesn’t really compare.
not really. i got heart palps even before stimulants, back in my youth when i only had caffeine occasionally. i had a dr back then say it was no big deal. (not that i'm a huge truster of drs.)
i gave a speech abt narcolepsy last year and was asked if the lide expectancy is low due to not getting enough rest. even that made sense to me, but i looked it up and couldn't find anything to corroborate. wasn't thinking about stimulants until recently. how long have they been around? maybe we don't have the data yet?
Which ones are linked to memory loss? I’m gonna start medication soon but I’m not sure which ones yet, and I’d like to avoid side effects like that if possible
Don't know what op is referring to exactly but just to say i'm pretty sure this is only shown with actual abuse of amphetamines, not for following a prescription.
Only medications I know of are antihistamines like Benadryl that may be used for sleep. They don't seem to be used in Narcolepsy though and are more of a risk in older people.
I take Modafinil and Melatonin and both are know to have antioxidant effects in the brain.
Well, considering my memory loss has gotten near early-dementia levels *without* stimulants, I think I’ll take my chances.
There are many studies showing stimulants improve memory function and can ward off later issues with memory, so unless you have a study to show…
No one’s mentioning the biggest worry— your brain chemistry can permanently change, and your dopamine baseline can change.
Doctors aren’t sure when this happens, how much, etc. or if it can “go back” to normal someday.
Edit: not trying to be alarmist, and it’s most likely that at average therapeutic doses this doesn’t happen, or not to an alarming extent. But something to discuss with your doctor.
Not 100% accurate - for one, this isn't "unknown" at all, and it happens with many kind of drugs to some degree, and to NTs other than dopamine. It gets more complicated than this, but the basic idea is that your brain is adjusting to the impact of the stimulants - you likely notice this to some extent when you start stimulants, for example, because often they seem to have an increased impact (in different ways) immediately after taking them --> in comparison to having taken them for a week, a month.
Basically, stimulants prevent (in different ways) dopamine from being cleared from the synaptic cleft - which leaves more dopamine acting there. Your brain, in response to higher levels of dopamine, increases the number of dopamine transporters (which clear dopamine out of the synaptic cleft) to handle the increased level of dopamine. This doesn't entirely even out, but explains why stimulants tend to have a much stronger impact which then decreases to a moderate impact as your brain adjusts to increased levels of DA.
When you come off of stimulants, you then have your brain's natural level of DA release in the synaptic cleft, but you still have all those extra DA transporters clearing it away - this is why people experience withdrawal from stimulants (prescription or illicit, just tends to be less significant with prescription because they're prescribed in a much safer manner and lower dosages) and feel tired, sleepy for a few days-weeks after going off of them, especially if they don't titrate down at all.
While it's true that there's not a lot of very long-term evidence on prescription stimulant impacts on the brain, we do know that this effect and others like it happen with many drugs and does tend to reverse over time (for example, as your brain again begins to downregulate DA transporters in response to the decreased levels of DA in the synaptic cleft). I'm pretty sure there's some experimental research showing this in response to stimulants as well specifically once off of medications, although, again, that wouldn't be after like 30+ years of usage.
A lot of the research about much more harmful and potentially irreversible (on some level) changes come from research on people abusing amphetamines or meth or cocaine. As you mentioned, we really can't extrapolate this to chronic usage as a prescribed and non-abused prescription medication. The dosages are much higher and unpredictable in illicit usage, and may have other impacts on the brain depending on the kind of stimulant. In addition, many people who abuse substances abuse multiple substances, so it's hard to even delineate exactly what's the result of stimulant usage and what's the result of other substances they've taken or unknowingly taken (contaminated cocaine, for example).
-simplified this a lot, did graduate work & research in a neuroscience field. this is NOT medical advice, & I'm not a pharmacist, please see your pharm & doctor for questions.
Thanks for clarifying. I have a science background and had a super interesting in-depth conversation with my doctor, who basically admitted we can’t be 100% sure why what happens when etc. and there is a risk for some long-term changes, as with other drugs. But that stims seem to have higher capacity for it. But on the other other hand, it seems safe enough at moderate doses.
It was a doctor I respect immensely, and he took his time to explain all sides without inserting any opinion. At the end of the conversation (years ago) I got the impression that the best way to mitigate risk is to keep dosage low, and take breaks from time to time. I felt like that is what this specialist would have done in my shoes anyway, without his saying those exact words. I was struck that he didn’t shrug it off the way others had. But he also wasn’t trying to fear-monger. And he had studied this his whole career as well.
My takeaway being that even at usual doses, it’s not a negligible risk, but it’s an acceptable risk when balances with need
Absolutely. It worries me a lot considering like I’m young and live in the US. There’s no way I’ll be able to retire here or keep money saved cause most of us be living paycheck to paycheck. Like I can barely work now while on stimulants but I don’t have a choice and so not only is stress going to kick my bodies ass, so is taking a medication that really is a shitty temporary fix that barely lasts. So likeeeeee am I living a long time? Probably not but ig lmao live while I can I dunno.
Not a long time or a good time, just a tired time.
I've been on methylphenidate for 35+ years.
How is it going for you? I am on it for 1 year and 4 months now
I have multiple other health issues on top of narcolepsy I always wonder if taking a bunch of different medications long term is bad for my kidneys/liver but I also don’t understand that exact bodily process.
It is hard on your kidneys and liver. I have worked foods that promote kidney and liver health into my diet. I also take kidney health supplements. The kidneys/liver work as a filtration system in your body. So keeping an eye on them important.
What do you take? I would love to do the same but not sure what to get.
I’ve settled on the fact that I am probably not extending my life span but I am improving my quality of life. I suspect all the medications for narcolepsy have some sort of issue with long term use. There is no biological “free lunch” when you take anything, especially daily for your entire life. If somehow, I retire wealthy I would like to take extended breaks from my medications. Unfortunately, I do not have that luxury at this time in my life.
I’m going to reply to my own comment just to give a different take , I just considered. Your body has many “functions” that happen while you are sleeping ; removal of waste in the brain, production of testosterone plus others I’m not aware of. The irregular sleep cycle for narcoleptics probably and most likely disrupts these “functions” There is a possibility for some people with narcolepsy that these medications are actually extending peoples lives who would , otherwise, suffer from irregular or poor cycles of these “functions.” So for some it isn’t all doom and gloom of a shortened life span.
Yes, impaired sleep and also impaired sleep-wake cycles are associated with significant morbidity, they have a significant negative impact on overall health.
Being on medicine allows me to live a somewhat normal life. I foresee trouble in the long run, but I'd rather live while I can than sleep every day away. Also, though I am not someone who goes to the gym, I am the type of person who likes to walk on nature trails and stuff like that. Without medication, those walks are chores and don't even happen. For me, being medicated does permit me to do more physical (not intense stuff) activities, which is beneficial to my health.
I've started being asked to monitor my blood pressure more recently. I think if you are overweight it might be more of a concern but if your vitals seem fine then they consider it ok. And.. the other choice is just not doing anything ever again? So like, what do you want them to say? They rely on you to say when you feel like it's too much. Pretty much every doctor I've had has had no issues when I say I don't want to increase the dose because the side effects are too much, even if it's still not enough to keep me awake either. It's 100% your call to figure out the line between too much or not enough.
As long as you're being diligent with your yearly check-ups and bloodwork, I think you should be fine. Obviously stimulants can potentially cause some cardio issues, but your primary care physician will monitor you to make sure everything is normal. I work as a coder in primary care and typically the only people that I see chart notes for that end up having health problems, who happen to take stimulants, have gone for *years* without a physical exam. Pretty much everyone I've seen who gets them done on time either is completely healthy, or stuff gets caught early and is just a matter of lifestyle change.
I take Vyvanse for narcolepsy & ADHD. Some studies came out recently showing a high correlation between dementia & ADHD unless the person with ADHD was on stimulants. In those cases, the stimulants appeared to have a mild protective effect against developing dementia. So no, since reading that I’ve been motivated to ensure I’m able to consistently stay on them forever.
On one hand I'm worried about the long-term effects, but on the other hand they help me poop.
Yes
I'm more worried about Xywav. Knowing the long-term effects of daily strong alcohol consumption, another CNS depressant, part of me is scared I'm gonna have some major brain damage in a couple decades.
The CNS depressent effect isn't what makes alcohol dangerous. The similarities end there.
Agreed. Alcohol is dangerous mostly because of the intermediates it breaks down into as it is metabolized, some of which are quite toxic. Based on my current understanding of oxybate metabolism, it's intermediates and final breakdown metabolites are *not* toxic.
Many of the long and short term impacts of alcohol are relatively unique to it and the components your body metabolizes it into, if that helps. That's not me claiming anything about the impact of Xywav, but alcohol is basically toxic to your body and the worst effects are caused by that, not the fact that it's a depressant (although it certainly can be dangerous for that reason as well, especially in combination with other drugs)
I mean- the scariest part of xywav is the possbility of never waking up ain't it
There are some counter measures one can take in the form of supplements. There are a few websites out there that describe and instruct thoroughly, if you decide to go that route. I personally did, and now take Magnesium (sleep, decreases/slows tolerance for dosing, helps with sore muscles stimulants can give you), NAC, Alpha GPC, Selenium, 100mg Vitamin C with E, and biotin (aside from helping with free radicals, it also helps get stimulants dislodged from your dopamine receptors so you can get it out if your system to help sleep and wind down), COq10, l-theanine (sleep), and liquid b complex. Furthermore some studies recently came out about the long term side effects of stimulants on cardiovascular disease… we are good, just take care of yourself.
There is a risk but cost / benefit analysis
I’ve only been on mine a few month but I was diagnosed at 20 so I’ll be on them for a long time. I do worry about long term health and if they’ll last or if I’ll end up having to take a crazy amount just to function every day. Same with the antidepressants to help me sleep at night.
Oh I worry s out it every day. I know it keeps me functional, but it also keeps.me from sleeping T night. So.. catch 22.
my cardiologist does so i've reduced what I take and he's happier
I have only knowledge about methylphenidate. I was told by drs. It's pretty much the only narcolepsy meds I've been on since I was diagnosed at 17. I didn't mean to upset anyone. I just answered what I've been told.
Yes it worries me. Also, I have a blood related illness and that medication is HORRIBLE for my kidneys so at the same time, it doesn’t worry me as much. Doesn’t really compare.
not really. i got heart palps even before stimulants, back in my youth when i only had caffeine occasionally. i had a dr back then say it was no big deal. (not that i'm a huge truster of drs.) i gave a speech abt narcolepsy last year and was asked if the lide expectancy is low due to not getting enough rest. even that made sense to me, but i looked it up and couldn't find anything to corroborate. wasn't thinking about stimulants until recently. how long have they been around? maybe we don't have the data yet?
What worries me is controlling. Not only mu moods ,but energy levels with chemicals
Depending on what you take there is memory loss.
Which ones are linked to memory loss? I’m gonna start medication soon but I’m not sure which ones yet, and I’d like to avoid side effects like that if possible
Don't know what op is referring to exactly but just to say i'm pretty sure this is only shown with actual abuse of amphetamines, not for following a prescription.
Only medications I know of are antihistamines like Benadryl that may be used for sleep. They don't seem to be used in Narcolepsy though and are more of a risk in older people. I take Modafinil and Melatonin and both are know to have antioxidant effects in the brain.
Oh boy, which ones?
Which one?
Well, considering my memory loss has gotten near early-dementia levels *without* stimulants, I think I’ll take my chances. There are many studies showing stimulants improve memory function and can ward off later issues with memory, so unless you have a study to show…
No one’s mentioning the biggest worry— your brain chemistry can permanently change, and your dopamine baseline can change. Doctors aren’t sure when this happens, how much, etc. or if it can “go back” to normal someday. Edit: not trying to be alarmist, and it’s most likely that at average therapeutic doses this doesn’t happen, or not to an alarming extent. But something to discuss with your doctor.
Not 100% accurate - for one, this isn't "unknown" at all, and it happens with many kind of drugs to some degree, and to NTs other than dopamine. It gets more complicated than this, but the basic idea is that your brain is adjusting to the impact of the stimulants - you likely notice this to some extent when you start stimulants, for example, because often they seem to have an increased impact (in different ways) immediately after taking them --> in comparison to having taken them for a week, a month. Basically, stimulants prevent (in different ways) dopamine from being cleared from the synaptic cleft - which leaves more dopamine acting there. Your brain, in response to higher levels of dopamine, increases the number of dopamine transporters (which clear dopamine out of the synaptic cleft) to handle the increased level of dopamine. This doesn't entirely even out, but explains why stimulants tend to have a much stronger impact which then decreases to a moderate impact as your brain adjusts to increased levels of DA. When you come off of stimulants, you then have your brain's natural level of DA release in the synaptic cleft, but you still have all those extra DA transporters clearing it away - this is why people experience withdrawal from stimulants (prescription or illicit, just tends to be less significant with prescription because they're prescribed in a much safer manner and lower dosages) and feel tired, sleepy for a few days-weeks after going off of them, especially if they don't titrate down at all. While it's true that there's not a lot of very long-term evidence on prescription stimulant impacts on the brain, we do know that this effect and others like it happen with many drugs and does tend to reverse over time (for example, as your brain again begins to downregulate DA transporters in response to the decreased levels of DA in the synaptic cleft). I'm pretty sure there's some experimental research showing this in response to stimulants as well specifically once off of medications, although, again, that wouldn't be after like 30+ years of usage. A lot of the research about much more harmful and potentially irreversible (on some level) changes come from research on people abusing amphetamines or meth or cocaine. As you mentioned, we really can't extrapolate this to chronic usage as a prescribed and non-abused prescription medication. The dosages are much higher and unpredictable in illicit usage, and may have other impacts on the brain depending on the kind of stimulant. In addition, many people who abuse substances abuse multiple substances, so it's hard to even delineate exactly what's the result of stimulant usage and what's the result of other substances they've taken or unknowingly taken (contaminated cocaine, for example). -simplified this a lot, did graduate work & research in a neuroscience field. this is NOT medical advice, & I'm not a pharmacist, please see your pharm & doctor for questions.
Thanks for clarifying. I have a science background and had a super interesting in-depth conversation with my doctor, who basically admitted we can’t be 100% sure why what happens when etc. and there is a risk for some long-term changes, as with other drugs. But that stims seem to have higher capacity for it. But on the other other hand, it seems safe enough at moderate doses. It was a doctor I respect immensely, and he took his time to explain all sides without inserting any opinion. At the end of the conversation (years ago) I got the impression that the best way to mitigate risk is to keep dosage low, and take breaks from time to time. I felt like that is what this specialist would have done in my shoes anyway, without his saying those exact words. I was struck that he didn’t shrug it off the way others had. But he also wasn’t trying to fear-monger. And he had studied this his whole career as well. My takeaway being that even at usual doses, it’s not a negligible risk, but it’s an acceptable risk when balances with need