Concerns about Medication Side Effects and Adjustments – Seeking Advice

[Jenisautistic]

Hello everyone,

I’m hoping to get some advice or hear if anyone else has gone through something similar regarding their medication and its effects. I’ve been reflecting on my experience with medications over the years, and I feel like I’m not quite sure if what I’m experiencing now is related to my treatment or something else.

A bit of background: I have some disabilities, including autism, spectrum disorder ASD, and intellectual disability (ID) and have been on various medications throughout my life. Right now, I’m taking Cogentin twice a day, typically both doses at night. Recently, though, I’ve been experiencing muscle pain and stiffness quite frequently. I’m not sure if this is a side effect of the medication or if something else is going on. I know muscle issues aren’t uncommon with some meds, but I’m unsure if the stiffness is typical for Cogentin or if it could be related to my CP (cerebral palsy). Has anyone here had similar experiences with Cogentin or other medications in this class?

Additionally, my medication history has been pretty complicated. I was prescribed multiple medications during a hospitalization back in 2014, and the effects were really negative, leading to a series of different mental hospitalizations. I had some medications removed and added, and at one point, I was taken off Adderall and Daytrana without being weaned off, which felt like a jarring change. I don’t even remember if I was put back on Adderall later, and I’m still uncertain about the details of the adjustments, since I was a teenager at the time. These experiences have made me hesitant to trust medication changes without knowing if they were done properly.

I guess what I’m wondering is whether there’s anyone here who’s gone through a similar journey with medication adjustments, especially those related to muscle pain, stiffness, or just the overall process of going on and off various meds. I’m looking for advice on how to approach my current concerns with my healthcare team, as I don’t want to overlook anything that might affect my well-being in the long run.

Has anyone else dealt with the kind of confusion and uncertainty I’m feeling around medication, side effects, and adjusting dosages or medications over time? Any insights, recommendations, or shared experiences would be greatly appreciated!

Thanks so much for taking the time to read, and I look forward to hearing from you.

 

[Jumpinbare]

Make notes if you need to, and bring the questions to your primary doctor. I have muscle issues with several different medications. My doctor acted quickly to switch me to alternatives.

 

[daniegirl6224]

Sorry you are going through this Is there a reason you are taking both Cogentin doses at night?

 

[MC1Rcat]

Hi, Here is what drugs.com lists as serious side effects for Cogentin... one of them is muscle cramps, which it says to let your dr know about right away.
Cogentin Side Effects: Common, Severe, Long Term

 

[Jenisautistic]

Sorry you are going through this Is there a reason you are taking both Cogentin doses at night?

I don’t have an exact reason but usually I just end up taking it both at night. Maybe I’m afraid I’ll forget to take it in the morning even though I usually take my famotidine which is also twice a. Day.

 

[daniegirl6224]

I don’t have an exact reason but usually I just end up taking it both at night. Maybe I’m afraid I’ll forget to take it in the morning even though I usually take my famotidine which is also twice a. Day.

I’m wondering if taking both doses at night might be giving you side effects, might be worth trying one dose in the morning and one at night

 

[WhitewaterWoman]

Cogentin, in my practice, was used to counteract the effects of the older psychotropic medications which caused tardive dyskinesia. It is also used to reduce muscle stiffness and tremors.

The first thing you need to know is why are you taking the cogentin. Discuss your symptoms with your doctor.

I have taken many, many medications and going on and off medications or changing doses can be frustrating. If you have a lot of things wrong with you, like I do, you don't know if what you are experiencing is due to medication changes or just your illness.

I would suggest keeping a journal of your medications and your daily symptoms. Do this for a week or a month and then show your doctor.

You should always know what medications you are taking (names, dosage, when to take) and why you are taking the medication. Without this basic knowledge, it is very difficult to discern what is affecting what.