Hi Everyone, My husband's worst symptom is dystonia in his toes - we are really trying to alleviate this so he can run once again. Botox (well actually it was Dysport that was given to use due to insurance) has not helped. Movement Specialist recommened Artane. I was wondering if I could have some feedback on people who have tried it. Or, whatever anyone thinks of it. Thank you.
Artane anyone?: Hi Everyone, My husband's... - Cure Parkinson's
Artane anyone?
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LearningAllICan
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I have read very bad reviews about this medication. I believe that it is has a very bad effect on cognition. I am just afraid to try it.
TheLordsWeapon• in reply to
When first diagnosed i was prescribed Artane, a week later, I called 911 told then I was having a heart attack, once, in the hospital, I lost all sense of time and days, fell in the shower, was shipped to local nursing home Feb 2016. I went walking down the hallway naked, telling people that I was a murderer and the police were coming to pick me up. Heard voices telling me all sorts of things.. called 911 telling operator i was murderer due in court for arraignment, ohhhhhh there's a lot more that happened the 6 months I was there...should I go on?
• in reply toTheLordsWeapon
To TheLordsWeapon ( TLW)
Jesus Christ. Holy be thy name! Glad that you came out okay. May you be forever blessed TLW.
TheLordsWeapon• in reply to
Thank you Mala, Jesus is the only reason why I'm still here today, I pray to him all day long, my "on" time just started an hour ago for the first time in 26 hours, hope it lasts a while... this is a living hell, having bowel movment problems last few weeks and assuming that since sinemet is absorbed in the upper intestine it may not be getting absorbed because of constipation, my 250mg dose at 8am, 11am, 3 pm today did nothing, took a 1000mg mucuna at 4 pm (Been experimenting with mucuna last few weeks) gave me 60 mins of relief...thats just starting to end now 8( been using miralax and milk of magnesia in a rotating schedule, probably end up getting immune to those too..
May all my suffering give... GLory to the Lord Jesus Christ!
High-dose thiamine cured my Parkinson's constipation and restored normal function. That improvement only took two weeks.
Sorry to hear of your suffering.
Can you share how much Thiamine are you taking?
and all functions improved? Thanks
I will give that a shot Sir! and not to get to graphic, but the sphincter muscle which is involuntary is not opening up when stool is at its door wating to exit, im taking milk of magnesia so stool was not solid(Constipated) but was dierrae, sometimes that could mean nerve damage. anyway I sipped on pure prune juice most of the afternoon and at 6:15pm EDT everything but the kitchen sink came out of me,, Praise God for Bodily functions.....
God Bless
I recall having that kind of problem and it seems to have resolved. I think the thiamine helped.
Park Bear. It’s really amazing your success with HDT. My husband has been on it. We play with dosages. But it doesn’t seem to help. Do you have other symptoms that it has helped? My husbands has a tremor (right hand/arm) and dystonia when he walks. Those are his worst symptoms. He doesn’t seem to have any non motor symptoms. Perhaps the HDT keeps it at bay ....
The Parkinson's constipation resolved within the first two weeks, but the other improvements took four months. A general improvement in Parkinson's symptoms. Once you find a satisfactory dosage, stick with it and have patience.
My husband has had a lot fewer bowel problems on Linzess. He also uses Miralax.
I learned that 4000mg Vitamin C or higher until loose stool helps with constipation.
taking 5000mg a day
but thank you for the input 8)
YW!
• in reply toTheLordsWeapon
Wow. What a story. Sorry you had such a horrible experience! So what meds are you on now that you are okay with? You can go on if you want 😊
I am so sorry for all your suffering. 
Artane should never be prescribed! It's a century old medication as our Mayo Neurologist told us and that he would NEVER have prescribed it! A UAB (University of Alabama at Birmingham) neurologist prescribed it for my husband. A week after he started it, I called this UAB neurologist and told her that I wanted to toss this med in the trash, as it is TRASH! Yes, it affected his cognition badly. Fortunately, he is doing great now.
Priase Jesus! good to hear he's ok!!!
I praise Him EVERY DAY, all day. I pray hard every night before bed.
AMEN and AMEN!
Oh my goodness. Glad you made it through.
I take it and it really helps. Dry mouth is horrible but worth it
Artane is an anticholinergic which has a downside in Parkinson's since the cholinergic system may already be impaired. Here is a report that I thought was interesting:
webmd.com/drugs/drugreview-...
Comment:
"I have benign essential blepharospasm and cervical dystonia. I was nearly blind from the severe spasms. I began taking artane about 8 years ago and it made all the difference in the world for my ability to see. The spasms better controlled and as a result I was able to go back to work. I also had much more energy to do things. The drawbacks from the medication were the dry mouth and constipation and surprisingly muscle stiffness. I also have problems with my short term memory. My tolerance level was also much lower than the recommended dose. Despite the negative effects, I still found that it was worth taking because it allowed me to function better than anything else I had tried. I would recommend the medication to anyone with dystonia who has a problem with either antro or retrocolis or benign essential blepharospasm. It really made a difference to me."
When first diagnosed i was prescribed Artane, a week later, I called 911 told them I was having a heart attack in the hospital, I lost all sense of time and days, I fell in the shower, was shipped to local nursing home Feb 2016. I went walking down the hallway naked, telling people that I was a murderer and the police were coming to pick me up. Heard voices telling me all sorts of things.. called 911 telling operator i was murderer due in court for arraignment and I needed a ride to the Hartford courthouse by 10am or I would have no hearing and be presumes guilty, ohhhhhh there's a lot more that happened the 6 months I was there...should I go on?
That was all from Artane ? Scary!!!
• in reply toTheLordsWeapon
Please go on if you have more to share.
TheLordsWeapon• in reply to
Mala just woke up from 6 hours of broken sleep, ill get my wits togther later today and finish this best seller of a story 8) which also involved, two other hospitols and my lovely one week stay at the "Institute for living", a well known phyciatrich ward in downtown Hartford. I should have filed a lawsuit and started writing a book 2 years ago...
• in reply toTheLordsWeapon
My advice. Write and finish the book pronto. I started writing my book 5 years ago after the devastation I feel and faced after Parkinson’s. I am still writing! 
TheLordsWeapon• in reply to
Advice well taken..!
I am currently taking Trihexyphenidyl, the generic equivalent of Artane. Like your husband my worst symptom is the cramping of my toes, which would occasionally occur at rest but always during exercise. The Artane seems to have really helped my foot dystonia while at rest, but has done nothing for the cramping while trying to exercise. It has also really helped my overall body stiffness. I am currently trying to determine if the long term effects of taking Artane is worth the relief I am experiencing now. Over the long term, it reportedly can have some rather severe effects on mental cognition.
Yes. Thats what I have read also. Have your tried Botox injections ?
No, I have not tried Botox yet. But my neurologist has suggested it several times.
I did a lot of research on it as I was really hopeful it would work. So sad that it didn’t. My husbands dystonia is when he walks - can’t barely run anymore - which is very depressing. He needs to run. He’s a soccer player and may need to quit which would be awful. Good luck to you.
Have you considered taking Magnesium supplements, Magnesium Oil? They work wonders!
Despe, yes. He has tried the oil and takes magnesium daily, I just purchased magnesium l-threonate. He was taking the citrate one. Hoping this one works. -Amy
Yes, it will. That is the best form of Magnesium, penetrates BBB according to IMT researchers.
LearningAllICan,
This is not about Artane, but forum member "danfitz" reported that celery seed extract (CSE) has definitely helped his toe dystonia. He also reported the same for Ibogaine, but Ibogaine may not be as easy to obtain as CSE. Here is a link to a copy and paste of his comments regarding CSE and his toe dystonia :
Art
:::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::::
healthunlocked.com/parkinso...
I advise caution regarding celery seed extract and dystonia. Celery seed extract has caused dystonia for me and others. healthunlocked.com/parkinso...
Thank you. Such a puzzle Parkinson’s is .... helps one, hurts another... it’s a tough one.
LearningAllICan,
This is why I mentioned in another post that some people are much more sensitive to celery seed extract. danfitz is apparently not very sensitive at all because his effective dose seems fairly high. It's always trial and error with PD.
Art
park_bear,
Did the dystonia finally go away after stopping the CSE?
Art
I've had good results with the numbness in my toes using a TENS unit.I think you should investigate one for dystonia. I am including a blurb from a person who also used a TENS. You can buy one like mine on Amazon for under $50.
"I had peripheral neuropathy before developing any PD symptoms. No specific cause was established. The symptoms were motor, with muscle weakness, and severe pins and needles and pain in the feet. Gabapentin helped, but the thing that really gave relief was a TENS machine. They aren't expensive, around £30. Get a dual channel, and follow the instructions for placing the electrodes. It's far and away the best thing I've ever bought, and nerve pain is the ideal job for TENS. They're easy to find in Boots or Superdrug and on Amazon. Most are wearable, so you can carry on as normal while you are using it.
"
I’m totally researching a tens unit. I have never heard of it before. Sounds like it’s for pain and numbness not sure if it will work for dystonia But I will research.
I found a couple of favorable references for using a TENS unit with dystonia. I plan on giving it a try.
are you ableto list the references please? Thanks
TENS for the treatment of writer's cramp dystonia: a randomized, placebo-controlled study.
Tinazzi M1, Farina S, Bhatia K, Fiaschi A, Moretto G, Bertolasi L, Zarattini S, Smania N.
Author information
1
Unità Operativa di Neurologia, Azienda Ospedaliera di Verona, Verona, Italy. micheletinazzi@libero.it
Abstract
Manipulation of afferent inputs may temporarily modulate dystonic spasms. Ten patients with writer's cramp were enrolled in a double-blind, randomized, crossover study in which the effects of transcutaneous electrical stimulation (TENS) and placebo treatment were compared. Patients were evaluated using four measures of dystonic impairment. The TENS group showed a significant improvement that persisted for 3 weeks in three of the four measures.
PMID:
15955950
DOI:
10.1212/01.WNL.0000163851.70927.7E
[Indexed for MEDLINE]
------------------------
Posted July 13, 2014
I at first used the word external TENS unit, and it worked well. The physician thought the internal stimulator might work better. So myself, along with my pain specialist, and neurologist all did research on it. We found that one gentleman in Great Britain had it done, but never returned.
So we all got together with a plan and performed the surgery. It took about 4-4.5 hours. A stimulator was placed and the leads were put in place (a max of 4 were used) and each lead had 4 contacts. The contracts were placed on the muscles that had the most dystonia.
Needless to say, it is still under study and the unit has never been turned off except for the first 2 visits. I know I would be in a wheelchair now if it were not for the stimulator.
I say to give the TENS a try and go from there.
------------------------------
Dr. Okun
Posted June 9, 2014
So far I have not been very impressed with TENS unit for treatment of PD dystonia or pain. It is a simple electrical stimulation external device and is usually very safe to try under supervision. Hope that helps.
My daughter was on it for only 12 days, it caused liver damage in this short term.
Lord have mercy! Do not use! This drug can cause dementia (happened to my husband). He was immediately taken off and put on an exelon patch. Bless you on your journey.
I’m afraid of cognitive decline. His symptoms are just motor so I don’t want to introduce a new problem.
How long was he o Artane? Mine was only one week when he experienced cognition problems.
Despe, sorry if your talking to me. My husband is not yet on any pharma drugs... He was recently prescribed Artane and we are trying to decide which drug if any, to take.
Anything but Artane! Came from a Mayo neurologist/MDS! Our present MDS (Vanderbilt) has no problem with natural levodopa and prescribed just Carbidopa to enhance levodopa's crossing the BBB. He also prescribed 1/2 tablet Azilect. I was really impressed when he told us "Less (med) is more!"
I believe Artane and Cogentin are similar. I was given cogentin once for a non PD reason. It totally knocked out my short term memory. Scared the sh.. out of me. Highly anticholinergic which is linked to dementia risk,
Crazy!
Artane did help my husband's tremors but he broke out into a Psoriasis like rash all over his body so he had to stop taking it.
So bizarre!!! I am mostly worried about cognitive decline. Who would have thought a psoriasis rash!?!
I took Artane for 1 day/night and said, never again. I got out of bed almost fell over, my head felt like it was going to explode, I started to walk forward & walked backward about 5 or 6 steps & I was talking to people, I didn't see them or hear them but I knew the answers to their questions.
laglag, that's awful. What a scary experience.
I ordered this for my husband's claw toes that hurt a lot. I'll let you know if it helps him walk comfortably.
amazon.com/gp/product/B07TJ...
I used this amazon.com/gp/product/B07DN... It worked very well, I used it about a month. Havn't needed it any more. Nutty podiatrist said only thing to do was surgery to cut tendons, that was first of march.
I just ordered this - hope it helps. Thanks for your suggestion.
thanks for the link.
Thank you. I ordered something similar, but it tore before I could give it a good try. I will try ordering this one.
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