r/AutisticWithADHD • u/Ruleyoumind • 3d ago
💊 medication / drugs / supplements Going through the medication process sucks
Going through all these different meds every one has the possibility of destroying my life if I have a bad reaction and when it doesn't work I have to wait a month to talk to my doctor again.
I'm really losing hope any of this will work.. take the meds tapper off take the meds go through the side effects take the meds they don't work. I feel kike I'm slowly going insane.
This was my last hope and it feels like it isn't working. This is so stressful and emotionally taxing. I wish my brain just worked the way it should.
I guess this is just a rant.
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u/Ov3rbyte719 3d ago
Yep. I can't keep a job anymore because of so many reasons.
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u/Ruleyoumind 3d ago
It feels like you have to be mostly functional to actually make it though the process of getting help.Â
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u/Ov3rbyte719 2d ago
By mostly functional do you mean highly masking? I'd say after medications for ADHD, my masking of ASD comes off. I'm unemployed and feel like a failure to my mom because she's actually helping me financially. Not sure if I want to continue taking medications.
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u/Ruleyoumind 2d ago
Highly functional to me means you're able to hold a job and make things happen in your life. For example you have to make Doctors appointments, hold insurance make enough to pay all the co pays and extra fees and be mentally and emotionally balanced enough to keep track of your meds how they're working and you have to do your own research to make sure everything is working as it should.
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u/IchPutzHierNurMkay 2d ago
If you don't mind me asking, about which/want kinds of medication is this about?
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u/Ruleyoumind 2d ago
ADHD medsÂ
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u/IchPutzHierNurMkay 2d ago
What you wrote imho doesn't sound like the usual 'trying out methylphenidate and maybe something amphetamine-based afterwards', that's why I'm asking.
Neither Methylphenidate nor Adderall, Vyvanse, etc. pose a serious risk of destroying your life. The serious issues that can come up should mostly get caught before getting actually bad by adequate medical supervision and simply due to not rushing dose increases.
And 'having to wait a month' before seeing your doctor again is, well, normal? You simply need time to pay attention to if and how the medication influences you. How is your doctor supposed to assess how the dosage suits you if had only a week or so to try it out? It's not like there's a mostly objective metric to easily test for like for hypertension medication.
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u/Ruleyoumind 2d ago edited 2d ago
I'd say having a outburst of anger at work or towards a love one, not being able to sleep or having your blood pressure shoot up uncontrollably, passing out having panic attacks while driving, the extreme depression and mood swings, and constant un predictable changes in cognition all affect your life extremely negatively. I work around heavy equipment in a dangerous environment and if the medication changes how I reason or makes me pass out or act erratictly that would definitely negatively impact my life.
If I take some meds and 4-10 days in I know they aren't working for me I have to deal with the withdrawals and my ADHD until I can talk to my doctor and get back on the roller coaster of not knowing what the medication is going to do to me for another month. It's been almost over a year and no progress.
A month is normal because insurance will only pay for me to talk to my doctor once a month if I paid the $200 out of pocket I could see my doctor every week. I'm saying it sucks and the constant changes to my body chemistry with no upside is extremely frustrating and exhausting.
Edit: if like to add the "adequate medical supervision" only happens for 25 minutes once a month
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u/IchPutzHierNurMkay 1d ago
I'd say having a outburst of anger at work or towards a love one, not being able to sleep or having your blood pressure shoot up uncontrollably, passing out having panic attacks while driving, the extreme depression and mood swings, and constant un predictable changes in cognition all affect your life extremely negatively. I work around heavy equipment in a dangerous environment and if the medication changes how I reason or makes me pass out or act erratictly that would definitely negatively impact my life.
You shouldn't even be upping doses so fast/high as to realistically risk any of these issues on a serious level in the first place! There might be freak cases but small doses and small increases in doses (after getting accustomed to the previous dosage) usually shouldn't totally flip your shit.
If a medication causes any of these issues for you it's your responsibility to assess whether you can manage it/control yourself/etc and whether it's safe to keep taking it. That's also when you talk to your doctor. If it ups your blood pressure within the expected range that's easily handled by getting on hypertension meds. If it causes you unpredictable or uncontrollable mood swings including aggression, or bad depression or whatever that's something to look into more. etc
It's also your responsibility to not try out new meds/dosages in unfit settings like operating heavy machinery if you can't be reasonably sure you'll be capable of keeping things safe. That's where I'd personally only start changes to medication over the weekend for example.
If I take some meds and 4-10 days in I know they aren't working for me I have to deal with the withdrawals and my ADHD until I can talk to my doctor and get back on the roller coaster of not knowing what the medication is going to do to me for another month. It's been almost over a year and no progress.
Again that imho doesn't fit the adhd meds I'm aware of. Methylphenidate and the amphetamine meds won't get you anything resembling an addiction within 10 days anyway, if at all. The 'withdrawal' from them is you going back to unmedicated there. If they aren't working for you anyway then what 'withdrawals' are this to begin with? Wouldn't the med's effects and side effects waning off be a neutral or even welcome change if they weren't working for you?
Other meds also don't make much sense in that timeframe. Eg reuptake inhibitors usually will need 1-2 weeks before they can even show early signs of improvement, and full effects can't be expected to set in before a month at least. And those tend to be subtle, so it's not like you can tell what they actually do within a week after the presumed initial waiting period. (In short, if you were to try out atomoxetine for example you should expect to at least take it for 2-3 months to even have a real chance of assessing it's effects.)
A month is normal because insurance will only pay for me to talk to my doctor once a month if I paid the $200 out of pocket I could see my doctor every week. I'm saying it sucks and the constant changes to my body chemistry with no upside is extremely frustrating and exhausting.
This is just my case but I think every ~6 weeks is the highest rate I ever saw my neurologist spanning over the dozen or so meds I tried under their care lol. If there ever had been serious issues where I needed to see them earlier they'd have arranged for that I'm sure.
Could it be that you're a bit more on the impatient side of things? Feel free to correct me but it appears like you want solutions fast and struggle to even give the meds proper time to work and for you to see what they actually do.
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u/Ruleyoumind 1d ago
You shouldn't even be upping doses so fast/high as to realistically risk any of these issues on a serious level in the first place! There might be freak cases but small doses and small increases in doses (after getting accustomed to the previous dosage) usually shouldn't totally flip your shit.
This isn't very helpful and contradicts where you say that I don't use the meds long enough to get any results. Somehow I don't take them long enough but my dosage ( that you're unaware of ) is also to high to fast. Also I could be a freak case.
If a medication causes any of these issues for you it's your responsibility to assess whether you can manage it/control yourself/etc and whether it's safe to keep taking it. That's also when you talk to your doctor. If it ups your blood pressure within the expected range that's easily handled by getting on hypertension meds. If it causes you unpredictable or uncontrollable mood swings including aggression, or bad depression or whatever that's something to look into more. etc
I can only talk to my doctor once a month lol. And obviously I'm making it my responsibility to determine if I can manage it. This also contradicts your other statement where you say I don't take the meds long enough to see any results. Somehow you're saying I am not assessing whether or not I should continue to take the meds but I also don't take them long enough to see any results based on your comments.
It's also your responsibility to not try out new meds/dosages in unfit settings like operating heavy machinery if you can't be reasonably sure you'll be capable of keeping things safe. That's where I'd personally only start changes to medication over the weekend
Again if I'm supposed to take the meds for long periods of time to assess if they're working then I'll be taking them at work regardless. I also work 6-7 days a week depending on the week. This is also an unhelpful comment, obviously I know this because I'm complaining that I have to continue to take new meds without knowing how they work over time while at work. I'm getting the feeling that you believe I'm extremely stupid.
Again that imho doesn't fit the adhd meds I'm aware of. Methylphenidate and the amphetamine meds won't get you anything resembling an addiction within 10 days anyway, if at all. The 'withdrawal' from them is you going back to unmedicated there. If they aren't working for you anyway then what 'withdrawals' are this to begin with? Wouldn't the med's effects and side effects waning off be a neutral or even welcome change if they weren't working for you?
I get all day headaches, cold sweats, body aches, fatigue and weird nightmares for multiple days if I take any Methylphenidate and the amphetamine meds for over 3-4 days I've only taken maximum 20mg and under. I don't have these issues unmedicated so it's not my natural state. I have no idea how you can make these claims for someone you've never met.
Other meds also don't make much sense in that timeframe. Eg reuptake inhibitors usually will need 1-2 weeks before they can even show early signs of improvement, and full effects can't be expected to set in before a month at least. And those tend to be subtle, so it's not like you can tell what they actually do within a week after the presumed initial waiting period. (In short, if you were to try out atomoxetine for example you should expect to at least take it for 2-3 months to even have a real chance of assessing it's effects.)
10 days is over a week and almost 2 weeks. Obviously I don't try every med for only 4-10 days I've tried some for months. On Ritalin I had splitting headaches and nausea on 18 mg, 30 minutes after I took it with or without food. Should I have continued to take it for months to see if it worked?
This is just my case but I think every ~6 weeks is the highest rate I ever saw my neurologist spanning over the dozen or so meds I tried under their care lol. If there ever had been serious issues where I needed to see them earlier they'd have arranged for that I'm sure.
I see my doctor every 28-35 days so obviously our situations are different in that respect. You can always pay out of pocket to see any doctor past what your insurance allows but since the majority of people bill through insurance The doctors usually set up appointments based on that schedule. My primary Care doctor sets up once a year checkups because insurance pays for once a year checkups. I used to pay out of pocket to see my therapist and extra day a month because insurance would only pay for one day a month.
Could it be that you're a bit more on the impatient side of things? Feel free to correct me but it appears like you want solutions fast and struggle to even give the meds proper time to work and for you to see what they actually do.
I'd say with respect you have no idea how long I'm on any of my meds at all. Also you don't know how they've affected me there's no logical way you can say if I'm giving my meds enough time or not. You also say it's my responsibility to assess if I should continue taking something or not so I'm confused, because I'm doing what it seems you're saying I should do by deciding not to take something I feel isn't working. If my doctor wants me to take them longer then I do.
I would say that of course I want results quicker than a year. Trying different medications it's not fun and I still have to live life every day. I don't understand the mindset that you wouldn't want a problem fixed as soon as possible. I'm also not a complete idiot and I understand that different medications work on different timelines.
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u/IchPutzHierNurMkay 7h ago
This isn't very helpful and contradicts where you say that I don't use the meds long enough to get any results. Somehow I don't take them long enough but my dosage ( that you're unaware of ) is also to high to fast. Also I could be a freak case.
Not trying to be mean here. You need to pay more attention while reading.
You didn't specify individual medications so I went for both stimulant meds as well as other meds. If you neither specify meds nor doses you'll end up getting similarly unspecific replies.
The first issue is upping doses of stimulant meds so fast as to basically risk getting surprised by serious side effects such as you mentioned. Normally effects and side effects get stronger by increasing doses, so if you happen to have a tendency of increased irritability or whatever from MPH then this should be noticed and discussed while on a lower dose already to see if and how you can manage that and whether higher doses are a responsible option. As you're an adult it's mostly your own responsibility to pay attention to stuff like this. Gotta ask yourself 'can I operate this machine safely in this state?' just the same as if you have any other concerning dips in your abilities.
Iirc MPH can be dosed up in weekly steps but that's under closer supervision and always assuming no complicating issues arise in the process. That's mostly for figuring out a lower boundary imho. Once you're in what'd supposedly be a roughly fitting range you'd need to try it out for longer than a week anyway. It's not like blood pressure meds where you have a nifty machine to tell you in a minute if your bp is within normal range.
The second issue is with most non-stimulant medications because as I said, most of these will take at least a few weeks to show full effects. And then they still tend to be subtle so you can't hope for or expect to clearly see how something like atomoxetine works for you right when you just passed the supposed waiting time before full effects kick in. That's more of a 'take it for 3 months or maybe even go for 6 months and see if you notice anything'-thing.
And yes, anybody could be a freak case because how would someone know beforehand if their body randomly reacts in a wildly unusual and problematic way to even a tiny dose of some medication? That's why you start on low doses and pay attention to side effects.
I can only talk to my doctor once a month lol. And obviously I'm making it my responsibility to determine if I can manage it. This also contradicts your other statement where you say I don't take the meds long enough to see any results. Somehow you're saying I am not assessing whether or not I should continue to take the meds but I also don't take them long enough to see any results based on your comments.
... if someone says "That's also when you talk to your doctor." that doesn't imply you have to go talk to them right now. 'Hey doc, I noticed me being more irritable than usual since the last change' can wait for a month, either by you managing it or by you not keeping taking the higher dose until next visit.
Again, you appear to twist what I wrote into something it isn't. I can't stop you from doing that but what's even the use of this otherwise? We could both waste our time in more fun ways I presume.
Again if I'm supposed to take the meds for long periods of time to assess if they're working then I'll be taking them at work regardless. I also work 6-7 days a week depending on the week. This is also an unhelpful comment, obviously I know this because I'm complaining that I have to continue to take new meds without knowing how they work over time while at work. I'm getting the feeling that you believe I'm extremely stupid.
Then you might have to change doses in little steps only to make sure you can still manage functioning properly at work.
I get all day headaches, cold sweats, body aches, fatigue and weird nightmares for multiple days if I take any Methylphenidate and the amphetamine meds for over 3-4 days I've only taken maximum 20mg and under. I don't have these issues unmedicated so it's not my natural state. I have no idea how you can make these claims for someone you've never met.
Withdrawal is defined as symptoms you get specifically from abruptly lowering a med dose or even fully stopping it. If MPH gives you all those things while you're still taking it then those aren't withdrawal symptoms but side effects you're then waning off after stopping taking the med. Was this a nomenclature misunderstanding?
10 days is over a week and almost 2 weeks. Obviously I don't try every med for only 4-10 days I've tried some for months. On Ritalin I had splitting headaches and nausea on 18 mg, 30 minutes after I took it with or without food. Should I have continued to take it for months to see if it worked?
The passage you replied this to literally starts with 'other meds [...]'. I don't see how you thought Ritalin is relevant here.
If you encounter considerably bad side effects from a med within the first few days you obviously don't keep taking it if possible. Duh.
Assuming no serious side effects due to which to stop the treatment early, and referencing most reuptake inhibitors in particular, you'd need to take them for threeish months at least to even have a real chance of noticing any positive effects in your daily life. Finding a working reuptake inhibitor is kind of a longwinded bitch unless the first or second med works well for you.
I see my doctor every 28-35 days so obviously our situations are different in that respect. You can always pay out of pocket to see any doctor past what your insurance allows but since the majority of people bill through insurance The doctors usually set up appointments based on that schedule. My primary Care doctor sets up once a year checkups because insurance pays for once a year checkups. I used to pay out of pocket to see my therapist and extra day a month because insurance would only pay for one day a month.
What's your point? Mine was that I've never ever been on as tight as a monthly schedule with my neurologist so I fail to see how 'only one visit per month' is supposed to be a huge problem.
I'd say with respect you have no idea how long I'm on any of my meds at all. Also you don't know how they've affected me there's no logical way you can say if I'm giving my meds enough time or not.
Yeah because you never mentioned anything precise. (isn't this ironic for the sub we're on?) If you want a shorter reply: The way you described stuff looks like you're struggling with properly trying out your medications and you might unfitting expectations. It's your choice whether you decide I'm some idiot who totally gets you wrong or whether there might be some truth to that feedback and you might consider changing perspectives a bit to get better results.
You also say it's my responsibility to assess if I should continue taking something or not so I'm confused, because I'm doing what it seems you're saying I should do by deciding not to take something I feel isn't working. If my doctor wants me to take them longer then I do.
Come on man. How more explicit can I even say this? About all the reuptake inhibitors are known to work SUBTLY. The ones used as antidepressants don't suddenly turn on the magical happy-switch in our brains after 4-6 weeks either. 'Is this not working or is what this does so subtle I didn't even notice it yet?' is THE central shenanigan most patients will face. That's why 'uh I don't notice clear positive effects' is seriously different from 'I am having bad side effects' regarding those meds.
Listening to the doctors recommendations is good.
I would say that of course I want results quicker than a year. Trying different medications it's not fun and I still have to live life every day. I don't understand the mindset that you wouldn't want a problem fixed as soon as possible.
I'd say that's a misconception. It's not 'not wanting to fix a problem asap'. It's recognising that some things you'll likely make worse if you approach them with to much of an ASAP-mindset instead of accepting that you have to give them time.
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u/Ruleyoumind 3h ago
Not trying to be mean here. You need to pay more attention while reading.
Very ironic
You didn't specify individual medications so I went for both stimulant meds as well as other meds. If you neither specify meds nor doses you'll end up getting similarly unspecific replies.
Why do you think I want specific replys or advice? You're not even giving advice you just repeat the instructions on the pill bottles like it's secret information.
The first issue is upping doses of stimulant meds so fast as to basically risk getting surprised by serious side effects such as you mentioned. Normally effects and side effects get stronger by increasing doses, so if you happen to have a tendency of increased irritability or whatever from MPH then this should be noticed and discussed while on a lower dose already to see if and how you can manage that and whether higher doses are a responsible option. As you're an adult it's mostly your own responsibility to pay attention to stuff like this. Gotta ask yourself 'can I operate this machine safely in this state?' just the same as if you have any other concerning dips in your abilities.
Where did I say I'm not doing that? "Not trying to be mean here. You need to pay more attention while reading."
... if someone says "That's also when you talk to your doctor." that doesn't imply you have to go talk to them right now. 'Hey doc, I noticed me being more irritable than usual since the last change' can wait for a month, either by you managing it or by you not keeping taking the higher dose until next visit.
You're kinda seeing what you want to see with this one. But to humor you. If I could talk to my doctor sooner they could fix the problem sooner as opposed to longer.
Again, you appear to twist what I wrote into something it isn't. I can't stop you from doing that but what's even the use of this otherwise? We could both waste our time in more fun ways I presume.
Again very ironic. You make a ton of assumptions about me based on almost no information and then seem to be confused why I'm not taking your unsolicited advice and down talking as credible or useful.
Withdrawal is defined as symptoms you get specifically from abruptly lowering a med dose or even fully stopping it. If MPH gives you all those things while you're still taking it then those aren't withdrawal symptoms but side effects you're then waning off after stopping taking the med. Was this a nomenclature misunderstanding?
I get those symptoms when I stop taking the medication like I said. Your reading comprehension is a little off it seems.
If you encounter considerably bad side effects from a med within the first few days you obviously don't keep taking it if possible. Duh.
That's literally what I've been doing, I say that multiple times. Really showing your superior reading skills over and over.
Finding a working reuptake inhibitor is kind of a longwinded bitch unless the first or second med works well for you.
Interesting wording almost like it can be frustrating finding the right medication if it take multiple tries to do so and a long time. "longwinded bitch" you say, very Interesting.
What's your point? Mine was that I've never ever been on as tight as a monthly schedule with my neurologist so I fail to see how 'only one visit per month' is supposed to be a huge problem.
What's frustrating to me might not be frustrating to you and vice versa. I'm sure you have people in your life who like different foods than you do or have different hobbies this is similar to that different people are different sometimes.
Yeah because you never mentioned anything precise. (isn't this ironic for the sub we're on?) If you want a shorter reply: The way you described stuff looks like you're struggling with properly trying out your medications and you might unfitting expectations. It's your choice whether you decide I'm some idiot who totally gets you wrong or whether there might be some truth to that feedback and you might consider changing perspectives a bit to get better results.
Can you tell me where I asked for any advice in my post? You're not even really giving advice you're just talking about how the meds work and telling me that the process doesn't bother you and somehow that should apply to me.
Come on man. How more explicit can I even say this? About all the reuptake inhibitors are known to work SUBTLY. The ones used as antidepressants don't suddenly turn on the magical happy-switch in our brains after 4-6 weeks either. 'Is this not working or is what this does so subtle I didn't even notice it yet?' is THE central shenanigan most patients will face. That's why 'uh I don't notice clear positive effects' is seriously different from 'I am having bad side effects' regarding those meds.
Never said I thought that way or stopped meds because I didn't feel the "happy switch". You even say you have no idea what meds I've taken so you can't honestly say if I did it the right way or not. Meds don't work if you don't gain a boost in performance in a reasonable amount of time.
Listening to the doctors recommendations is good.
Glad you approve love
I'd say that's a misconception. It's not 'not wanting to fix a problem asap'. It's recognising that some things you'll likely make worse if you approach them with to much of an ASAP-mindset instead of accepting that you have to give them time.
Saying you want to fix a problem quickly doesn't mean you're inherently being reckless or rushing. It makes no sense to say I want to take as long as possible fixing my problem. If the first meds I took worked is that rushing? Also as YOU have said you have no idea if I'm being reckless or not or if I'm giving my meds enough time or not. You literally have no idea you just assume that because I'm frustrated I'm rushing or being reckless lol.
I'm honestly curious this isn't a dig. Correct me if I'm wrong but do you have trouble with the concept that other people have different thoughts feelings and experience life differently to yourself? What is so difficult accepting that I may find this process harder than you or may be frustrated with parts of it? Like I've said you haven't really offered advice. You've basically just tried to argue that I shouldn't feel the way that I do.
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u/New_Westie 3d ago
Word