Trihexyphenidyl Patient Views

My child has been taking trihexyphenidyl for over a year and she really has had no side effects. It's possible that it contributes to constipation, but we have that managed. I think it has helped with fine motor and verbal skills.

We use trihexyphenadyl for dystonia. My spouse claims she sees an effect although I don't see that much. It's hard to tell over such a long period of time though

I’m a 26 F, I take trihexyphenidyl for my right side hemiplegia for spastic CP. When I first started on the medication, it made me feel fuzzy and caused dry mouth but it definitely makes my arm and leg more stable and almost a different less numb feeling. I take this as long as Botox shots every 3 months and currently wear a AFO and hand/finger splints.

I love my AFO and it really helps my walking without a chance of falling or dragging my foot. Unfortunately, it does take some time to figure out what works as each case is unique.

Yeah we have used trihexiphebdyl for 4 years and we are still unsure about it. My child has dyskinetic cp and initially did feel like it helped with some reduction excesss movement and improved speech. But he has had years of nightmares and we have recently reduced the dose and had a huge improvement in his nighttime distress. We have still kept using a small dose as do see an impact on speech

I came across your post as I was searching for someone who has used trixhexyphenidyl. My child with Dystonia/ CP was recently prescribed the med for thrice a day dose. We wanted to start off slow with one dose a day and I think it's been so weird for him. He's nonverbal which makes it much harder to understand but he's been having a lot more difficulty falling asleep, wakes up tired and has been startling a lot.

I must say that the first week was okay and we noticed some definite decrease in his involuntary movements but now the involuntary movements are back. Now I'm just completely unsure about it and hopefully we'll find another route to help with his Dystonia.

Hi, my child has right hemiplegic CP. She was prescribed trihexyphenidyl by our primary neurologist. She had bad fatigue side effects that she was sent to the school nurse’s office and we had to pick her up from school. We tried 50% lower dosage that was originally prescribed and increased it over time, but my child experienced the same fatigue side effects that she had before. We were concerned about her condition at school so we decided to take her off the medication. Every person has their own unique situation, so our experience might not be the same with other families.

Yeah good idea.

Also, if it helps, here’s what the AI agent had to say about it:

Trihexyphenidyl (Artane) is an anticholinergic medication primarily used to treat dystonia and Parkinson’s disease symptoms, including muscle stiffness and tremors. While not a widely recognized side effect, there are some indications that it "could" contribute to night startles or bad dreams due to its effects on the nervous system.

Potential Reasons Trihexyphenidyl Could Cause Night Startles or Bad Dreams:

• CNS Stimulation & Confusion – Trihexyphenidyl affects neurotransmitters, particularly acetylcholine, and can cause cognitive side effects like confusion, agitation, and hallucinations, especially at night.

• Insomnia & Restlessness – Some patients report difficulty sleeping or fragmented sleep, which can lead to night startles.

• Vivid Dreams or Nightmares – Anticholinergic drugs can influence REM sleep, leading to intense, vivid, or disturbing dreams.

• Muscle Spasms or Myoclonus – In some cases, dystonia or muscle twitches (which the drug is prescribed to help) can occur paradoxically as involuntary jerks or startles during sleep.

• Anticholinergic Toxicity – Higher doses or sensitivity to anticholinergic drugs can cause hallucinations and sleep disturbances, including nightmares.

What Can Help?

• Adjusting Timing – Taking the medication earlier in the day rather than close to bedtime may reduce nighttime effects.

• Lowering the Dose – If the side effects are severe, a dose reduction (under medical supervision) may help.

• Hydration & Sleep Hygiene – Ensuring good hydration and reducing stimulants like caffeine can improve sleep quality.

• Medication Review – If symptoms persist, a neurologist may consider adjusting medications or switching to alternatives.

Hi my boy, my boy saw in increase in bad dreams and startling during the night whilst on trihex- we scaled the dose back and things have improved.

Three relevant studies have been found that might help you understand more about the use of trihexyphenidyl for dystonia in children with cerebral palsy.

• Study from the University of Texas Southwestern Medical Center: This study explored the benefits and tolerability of trihexyphenidyl in children with cerebral palsy, focusing on those treated for dystonia or sialorrhea. It included 101 patients with an average starting age of 7 years and 10 months. The majority (91%) tolerated the medication well over an average treatment duration of 3 years and 7 months. Side effects were noted in 69% of subjects, predominantly in those aged 7 years or older, occurring soon after treatment initiation. The treatment led to reported improvements in dystonia in upper and lower extremities, sialorrhea, and speech issues​​. - https://pubmed.ncbi.nlm.nih.gov/21310336/

• Study from Maulana Azad Medical College & Lok Nayak Hospital, New Delhi: In this study, 41 children aged 6 months to 5 years with predominantly dystonic cerebral palsy were treated with trihexyphenidyl. Significant improvements were noted in dystonia severity, motor function, and developmental age. There was a notable decrease in total dystonia scores and an increase in motor milestones achievement. Improvements in fine motor skills were also observed. However, the study emphasizes the need for further research in larger groups of children​​. - https://pubmed.ncbi.nlm.nih.gov/36373299/

• Cochrane Review (2018): This systematic review evaluated the effectiveness of trihexyphenidyl for dystonia in children with cerebral palsy. The review highlighted the lack of high-quality evidence for the effectiveness of trihexyphenidyl in this context. It pointed out the need for well-designed clinical trials to better understand the benefits and risks associated with this treatment. The review underscores the importance of cautious interpretation of existing data and the necessity for further research to provide clear guidance for clinical practice Cochrane Database Syst Rev. 2018. - https://pubmed.ncbi.nlm.nih.gov/29763510/

Combining insights from these sources, it becomes clear that while there is some evidence supporting the use of trihexyphenidyl in managing dystonia in children with cerebral palsy, the occurrence of side effects and the need for further research are recurrent themes. These studies collectively underscore the importance of individualized care and close monitoring when considering trihexyphenidyl as a treatment option.

*Please note this AI response is a new feature currently being tested in the Turnto app. The responses may not be accurate.