59yr old male, diagnosed Feb 2023, (first tremor symptoms 2014). Currently taking Ropinerole, Neurologist suggested trying Trihexypheniyl to control tremor, has anyone any first hand experience of using this, current dose 3mg p/d?
Trihexypheniyl Hydrochloride: 59yr old male... - Cure Parkinson's
Trihexypheniyl Hydrochloride
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JH23
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I have used it for a short period of time. It caused extreme dryness of eyes and the discontinued it
Thanks for this, yes I've found the same issue, did you try anything else?
combination of selegiline and levodopa is effective for tremors and work fine for me. Selegiline 5 mg once a day ( or you can increase it to twice a day depending upon condition). Propranolol is also effective for tremor
Thanks, My neurologist mentioned Propranolol, do you experience any extra fatigue? Not heard of Selegiline but will make a note and mention to neurologist if Trihex... becomes unbearable.
I take propranolol on requirement basis. Didn't notice any extra fatigue due to propranolol
when the neurologist was trying to figure out if my husband had essential tremor or Parkinson's he had him take propranolol which made him dizzy and nauseous and I have to wonder in retrospect if it was somehow related to making his blood pressure go too low since his blood pressure has always been in the low range- he also had him try another drug that is used in essential tremor and that was problematic as well so that and other experiences have made us leary of medications
Thanks for this, I hope you're HWP and you are doing ok, to be honest my neurologist did warn me that Propranolol could cause some issues, thanks for sharing your experience
what were the issues for propranolol?
My neurologist mentioned fatigue as a side effect and as I am tremor dominant fatigue is a real issue for me personally.
Ok thank you
Did you mean Trihexiphenidyl, aka Artane? My doctor started me on a small dose recently and it really helps with my tremors. Also helping me with that fight or flight feeling that never seems to go away. My eyes were always crusty, so I don't think that's the drug. Probably oxalates.
Thanks for this, it might be the same stuff, the box I have is labelled as 'Trihexipheniyl' but I am sure my Neurologist mentioned Artane, good to hear it helped your tremor, what dose are you on?
I am on 3mg twice a day. Im sure theres plenty of room for increases. Mind you, it is an Acetylcholine blocker, so that may explain long term cognitive decline, not 100% certain. Whats happening in our nervous systems is that Dopamine is low because of the Parkinsons, so the ratio of Dopamine to Acetylcholine is out of balance. To balance it, we cant raise Dopamine to normal level;s so we lower Acetylcholine to even things out. There's a bit more to it thats hard for me to explain, regarding muscle movement and counter movements. Its easy to look up on youtube n stuff. Its very interesting how this stuff works.
Thanks, I appreciate you taking the time to respond, interesting, I will do some more research but thanks for the heads up.
Have you noticed any cognitive decline or memory loss? I am thinking about taking Trihexipheniyl as well.
I'm on a relatively low dose at 3mg per day, I haven't noticed any cognitive issues so far but I've only been taking it for a few weeks, so realistically its perhaps too soon to say, my neurologist did warn me to be on the look out for any cognitive issues so its a thing to consider.
Does it stop the tremor completely? I also take Pramipexole for RLS, and I think it has effected my memory a bit - albeit in a very small way.
None whatsoever
Of course, it is known that advanced PD, itself, causes cognitive decline.
This is true
I know I’m late to the party here, but I had to chime in… My Neurologist had me on trihexylphenadol (I think that’s what it was called) to try to control my advancing tremor…already on carbodooa levodopa and pramipexole… after a week I had to discontinue it because it interfered so much with my cognitive abilities that I was literally afraid I was gonna lose my job. I’m a software engineer, and I need to keep my brain sharp & on its toes. This substance turn me into an idiot. Like, I would literally sit there for 10 minutes and not think about anything… Staring off into space… Knowing somewhere in the back of my mind that I was supposed to be doing something, but I couldn’t do it. Of course your mileages may vary but it was a total no go for me. After I stopped for a couple of days, I went back to normal cognitively.
Thanks for the feedback. I take Mirapex (pramipexole) for RLS and it is effecting my memory - it's causing weight gain as well. However, I don't know what else to take for RLS? Note: I will likely stay away from the Trihexyphenidyl.
Well obviously work with your doctor. I’m not a physician, nor do I even pretend to be. Reading to the comments in the thread, it’s pretty clear that the medication works for some people, it just wasn’t for me.
I was prescribed Trihexiphenidyl (Artane) by my doctor several years ago, but after reading about its long term use being linked to cognitive decline I decided not to take it. It's my understanding that it's a very old medication that isn't often prescribed anymore.
I seem to recall it being suggested as a fix for ALO (Apraxia of Lid Opening).
I've been taking it for about 6 months 2mg 3x a day. My pd nurse and neurologist disagree on it, with the neurologist suggesting I take it. When I started it the transformation was incredible, I could play guitar and felt nimble, agile and without tremor at times. However I have felt like my memory has been slowly affected already, but this is very subjective, I am very aware that this is a side effect and this may influence my perceptions. Also, the positive effects became less pronounced, which will lead to inevitable increase in dosage.
Recently, spurred by pressure from the pd nurse, I agreed to ween myself off it. I then coincidentally had a stomach bug that left me unable to retain any medication for 24 hours. I stupidly stopped completely and the results were I quickly becoming the pre THP slow and shaky mess I was before. I've taken half my normal dose and feel fairly normal again. I'm considering if it is worth the risks for more normality now, if the abrupt stop exacerbated the differences (very probable) and whether to continue. My pd nurse has offered beta blockers as an alternative.
It is my understanding that THP is proscribed for young onset, tremor dominant Parkinson's, and when it works it works well. My neurologist and my friend, who is a pharmacist, both embrace a 'improve quality of life now, worry about the future later' mentality, but this is based on their shared belief that a 'cure' is around the corner. My PD nurse, conversely, stated 'You have the good type of Parkinson's. Don't mess it up!'.
So that's my experience so far! No answers I'm afraid. 2-3 years diagnosed, early 40's, symptoms for 7ish years before.
Thanks for sharing this, so far the THP hasn't made any difference to my tremor that I have noticed, my eyes are sore tho due to dryness, my neurologist also suggested beta blockers (BB) if the THP caused issues, but as I suffer from tremor fatigue and BB can cause fatigue I wasn't over keen. I will persevere with the THP for now to give it a fair go. I'm on 1mg 3x per day.
Have you tried adding mucuna? I am tremor dominant on my left side. I take 25/100 C/L and 1 NOW brand Dopa Mucuna and that stops my tremor. C/L alone didn't work and I wanted to go the more "natural" route. Maybe once a week or so I have to take an extra mucuna. I do get dry mouth sometimes from it but have no other side effect issues.
No I haven't tried Mucuna, I will read up on it, thanks for the information
No problem. You can buy it on Amazon. You can read a lot of posts about it here as well. If you have any questions, please feel free to ask.
What dose do you take and how often?
I take 1 25/100 Carbidopa/Levadopa ER and 1 NOW brand Dopa Mucuna 4 times a day. Usually every 4 hours.
Ok, I will do some more reading, and thanks for the offer I may come back to you if thats ok?
Yes absolutely - contact me any time...
1 NOW brand Dopa Mucuna Capsule contains 60 mg of L-dopa, so when you take 1 25/100 C/L and 1 NOW Mucuna, then you are getting 160 mg of L-dopa. I understand that you want to go the more "natural" route. However, when you say that C/L alone didn't work, were you using one and a half (1.5) 25/100 C/L (150 mg L-dopa) for about a week to see if that worked, since your therapeutic level of L-dopa seems to be ~160 mg?
I'm curious about an "apples to apples" comparison with regards to the same amount of L-dopa, while still getting some carbidopa so that the L-Dopa actually has a chance to make it to the brain. That is, does 1 25/100 C/L and 1 60mg NOW (total 160 mg L-dopa) provide better symptom relief than 1.5 25/100 C/L (total 150 mg L-dopa)?
I originally was just using Mucuna. However, 3 years after official diagnoses and at least 9 years since first symptom, I started taking 25/100 C/L to get better symptom relief. My therapeutic dose is 1.25 25/100 C/L (total 125 mg L-dopa). A NOW capsule has 60 mg L-dopa, and one Barlowe's Capsule has 260 mg L-dopa. So Barlowe's is out for me because its level of L-dopa is so much higher than my therapeutic dose. I'm wondering if it's worth it to try say .75 25/100 C/L and 1 NOW (total 135 mg L-dopa). That's why I'm interested in your "apples to apples" comparison of equal L-dopa in one case all coming from C/L and the other a mix of macuna and C/L.
Sometimes I take 1/2 25/100 C/L when I am feeling good and don't feel like I need a full C/L. This is usually the second dose of the day. I try to stay in tune to what my body is saying. I have not tried doing it for a full week since I can't function at work when my tremor is in full force. I'm interested in trying it for a full weekend though now to see how it goes.
You should try it and see what works best for you. It's so different for everyone and I feel like you just have to keep trying and changing as your needs change.
I've been on this dose since diagnosis Jan 2023. I had symptoms only 4 years before that but had a traumatic event that brought the tremors on in a big way.
Thank you for your words of encouragement. I have been lucky in that my doctor is receptive to my suggestions. I don't take doses on a fixed schedule but based on how I'm feeling. When I am doing a hard workout, I might need my doses closer together for instance. I think I will give the C/L Mucuna mix a try.
You're welcome. I hope it works for you as it did for me. Best of luck to you!
My husband diagnosed 2008 as early onset PD used Trihexyphenadyl for 8 years which helped with tremor but started to affect his memory so he stopped taking it.
Note the relation to memory: Alzheimer patients have reduced acetylcholine . trihexyphenidyl is an anticholinergic reducing your acetylcholine so ratio of dopamine to acetylcholine is re-balanced
He was on the Dopamine agonist Mirapex seemed to reduce tremors but caused severe impulse control disorder so Dr started Sinemet in 2018 which caused dyskinesia and cervical dystonia, strange ‘zaps” at night and freezing all within 2 years of starting. He is now 2 pills a day which stopped the freezing and reduced the dyskinesia
He also tried CoQ10 but that was alongside the trihexyphenadyl
He recently tried Propanolol (2023) which made his blood pressure tank. Cold hands and fatigue.
Cannibas sometimes helps to completely stop the shaking but inconsistent and difficult to get same strains
High intensity Boxing helps for a couple hours after the class ends
Still not enough! He is trying B1 now
Maybe high intensity ultra sound in future
I am encouraging mental health therapy as anxiety and social interactions causes his hands to shake uncontrollably!
Best of Luck!!! Prayers for all PD sufferers and care givers!
I’m also taking trihex about a year ago after initial diagnosis two years ago . 2 mg daily plus C
C/D 25/100 3 x daily. Trihex makes my mouth soooo dry like I smoked a joint! It does help but not entirely . Also trying B1 therapy and close to finding my “sweet spot “ after 6 months trying. I want to incorporate mucuna too just need to research it more, hopefully get off some meds, and PRAYER!,
i took Ropinirole and require togeetheer for more than 20 year. I have early onset Parkinson's which started at 26 years of age. The drug combination worked for me, my Parkinson's was tremor dominant. The only thing you have to be wary of is the fact that Ropinirole may have an effect on your pleasure centres and can cause excessive , such as gambling purchasing, et cetera
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