Anyone else autistic and unable to tell what new medication is doing to you?

[u/cinematicfeeling]

The interoception is so bad I just genuinely don't notice side effects. Until they are pretty much pointed out to me.

It took me a month to notice that ivabradine was causing me to see halos and light shapes. Only because I randomly saw someone else mention it. Someone else mentioned they were more tired - I was like oh right. This actually happens to me every day too.

I'm about to start propranolol and my doc is like "note down any changes and notice how you feel in general" sir I wouldn't know??? What do you mean and what do I even look out for??

Do you have any advice on how to make it easier for yourself? I think I'm going to create some kind of form I could use any time I start a new med because those are piling up. So that I can adequately judge how I'm feeling and what is happening with me

[u/Griffrose]

Maybe try write a checklist of common symptoms and go through them each day just to check in with yourself? I really struggle to put a name to how I’m feeling with symptoms like sometimes I just feel “unwell” and that’s not helpful for a doctor 😭

Mostly the things to keep a note of is blood pressure and hr while starting propranolol and these are things that can be check mechanically so perhaps take readings if you have a way of monitoring.

What I did was do a sitting and standing BP and HR reading and do it at a couple different points in the day, this allowed me to keep track of how the medication was affecting me. I would just also write down any random symptom just to see if it was recurrent or just a one off random symptom.

[u/Glum_Papaya_2527]

Yes, definitely. Also very bad at keeping track of severity and how often a symptom happens. I use the app Bearable to track symptoms I am feeling each day (along with sleep, medication I've taken, etc), and then it will call out trends for me, like an increase in headaches or whatever. I struggle with subjectively rating my symptoms but just do my best. I think over time it has helped me be more aware, too, and minimize less. I'm used to feeling like shit most days so I tend to ignore things for too long. 

I asked my doctor what symptoms specifically they would want me to look out for, and I also track my normal symptoms. I also like to track things like caffeine intake, hobbies (to make sure i am making time for things I enjoy),  amount of socializing (helps with noticing overstimulation), and a bunch of other things outside POTS too. 

[u/ambitious_moon237]

I’m autistic and take about 30 mg of propranolol a day. It makes social interaction a bit more manageable and minimizes the physiological signs of anxiety (which inadvertently reduces the psychological ones as well imo). Feel free to dm me with more questions!