Is there medication that works on tremors with no side effects?
Thanks.
Tremors: Is there medication that works on... - Cure Parkinson's
Tremors
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fel3k
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I take Sinemet 1.5 3x/day, and Amantadine. Neither seems to help with my tremor, although they do help with the stiffness and bradykinesia. The only side effect is nausea with the Sinemet.
In case you haven't tried this, my dr. said to eat a few crackers with sinement if it causes nausea.
Yes, but any answers won't help because some drugs will work for some, but not for everyone. You are stuck with trial and error and for tremor to be resolved with drugs, and you specify without side effects, you are mostly in for error. Have you tried B1?
HwP is on B1 and he’s still experimenting on the right dose. I recently read an article on “refeeding syndrome”. As HwP had an odor when he took c/l .. he stopped meds and smell was gone. Experience the same with B1 but there’s a reason ..the body needs it …to continue the B1 even if the smell returns ..eventually it should dissipate with enough B1. Tremors and drooling are hard for him. Thanks. He may have to try another drug.
B1 is not an effective monotherapy for PD. Even they who 'invented' the protocol made it clear it needed levodopa taken with it for it to be effective.
But, I think some have said B1 eliminated their tremor - no?
Dunno. People say a lot of things. And for a lot of different reasons. Even simon referenced the "vested interests" around b1 in his article earlier this year. Who do you suppose he was talking about?
The proof of the pudding is in the eating, no? This poster's HWP clearly has inadequately treated PD symptoms. Her previous comments indicate great enthusiasm for the b1 protocol so i suspect she will persevere with it. That being the case, she might as well do what Dr C advised.
He wasn't talking about all the people on this forum who have reported significant benefit.
Yes and almost all of those people are taking PD meds also, which is what i suggested.
Was B1 an effective monotherapy for you?
B1 increased my hand tremors significantly. Twice I tried it with exactly same result. Unfortunately it was not for me.
B 1 increases my hand tremor when I've had too much, then I take a break from it.
I haven't noticed them MBA, most are trying to work out dosage. Very few post any convincing ongoing success.
per Dr C … B1 rarely works for tremor. Doesn’t help my tremor, ever. C/L usually does. maybe .75 of time. As my MDS says, tremor can be set off emotionally, fatigue, exercise, etc. regardless of C/L dosage. I found this to be true. Years ago Amantadine worked for 1-2 years but had undesirable side effects. I’m good with C/L.
Hello PerlePark ~ If you don’t mind ~ what were the “undesirable” side effects? And did your doctor guide you on taking you off it?
Thank you for your time and help.
Have a fabulous day!
I experienced 2 side effects. 1 ankle swelling which as I recall is a common side effect. My mds originally recommended compression socks which I used for a few months Then I experienced horrible insomnia which receded after I discontinued use. Yes. She took me off it and put me on C/L which I still use years later. I seem to tolerate it just fine.
Thank you for your quick answer. I appreciate your help. Have a fabulous day!!
What form of c/l do you take?
presently taking 50/200 ER- 8,11,3,7. I also randomly take 1/2 25/100 IR if needed - if tremors are very bad , usually only once a day either 7, 3 or if I wake up in middle of night Again only if needed (1/2 25/100 IR)I try to take my C/L on time every day.
I take 1 c/l(25-100) IR every 6 hours. I think I need an adjustment. Is the ER form longer lasting? Any side effects different from c/l IR. I don't want any additional side effects . Looks like you don't take a dose before bed? How well do you sleep?Thanks for your help
Smitty, you may be correct, you may need an adjustment but please don’t think “well if he takes it…”. I would think your doc could answer re I/R vs E/R easily enough. This is basic stuff. You may have read, and I’ve found it to be true. Most Dr’s start on immediate release. Mine did but was taking too often. At my recommendation (actually Park Bear’s ) she ordered E/R. I’m on it now for probably a year or close to it PB wrote a thread which I felt was well researched and actually showed us his findings
By the way I’ve found PB to be one of the few, reliable resources
Yes for me, it definitely is longer lasting. Sometimes, not always I have mild dyskinesia. Not too bad. I take at 700 pm. If needed, often not, 1/2 25/100 IM , but again this is 4 me. My sleep pattern has changed for the better. Lately I sleep 6-7 hours a night. I used to take melatonin but presently do not. Smitty; I am hesitant to answer your questions as it may not be in your best interests. If you are uncomfortable with your Doc. Get a new one. That’s my advice.
Thanks I'm looking for another PCP AND MOVEMENT SPECIALIST. I like my neurologist but he defers to the move specialist who just pushes drugs. Good luck to you and thank you for the time and help. I'm just really struggling and appreciate your kindness.
How much c/l are you taking?
The Parkinson’s B1 protocol
Daphne Bryan’s book.
HwP is following her protocol as per Dr Constantini of Italy who discovered B1 therapy.
Ms. Bryan is donating all proceeds from her book, which she doesn't have to do.
One supplement that might be worth a try is Citicoline which has been shown to reduce tremor and other PD symptoms as well as allow a reduction in Sinemet dose by up to 50% :
pubmed.ncbi.nlm.nih.gov/332....
Here is a relevant quote from the systematic review :
' A total of 7 studies (2 crossover, 3 randomized controlled, and 2 open prospective studies) were included. Despite the varied outcome tools, this review found that patients with PD who were taking citicoline had significant improvement in rigidity, akinesia, tremor, handwriting, and speech. Citicoline allowed effective reduction of levodopa by up to 50%. Significant improvement in cognitive status evaluation was also noted with citicoline adjunctive therapy. '
Here is a link to multiple Citicoline products :
amazon.com/s?k=Citicoline&c...
Art
been taking citicholine for several years. Found benefit of increasing efficacy of C/L. Maybe some cognitive issues as well. But has never worked in tremor. However, I am tremor dominant for bout 6 years. I find reducing stress with C/L helps reduce tremor, at least in my case.
How much citicoline do you take?How much c/l do you take?How did you determine how much c/l you were able to cut back? Thanks
Re : Citicholine, I read Dr Mischley book and ran it by my Dr. Since (seems to me) we are all different ages, symptoms, illnesses, allergies , etc. so I take all advice with a grain of salt. I strongly recommend you do your research and discuss it with you DR. I do. I go to a very smart and knowledgeable MDS whom I totally respect. She was not trained in many supplements( as is common with many Dr’s) although she was with NIH for many years and has advised me certain supplements and vitamins.
. Re citicholine-,she was not familiar with it. She researched it and was appreciative of The introduction to Citicholine. She concluded it was safe and was fine for me to take. Supplements and drugs can and do interfere negatively (as well as positively) with other drugs and supplements regarding one’s biology and illness’s . One reason Iet my MDS be aware of everything I presently take or considering taken. My other advice is, if you are uncomfortable or do not trust or respect your DR, interview others.
How do you find a dr that uses supplements and alternative medicine and treatments? My neurologist, PCP and movement specialist say things like you don't need that. Or that won't be here for several years. I asked about DBS, BIOPHOTOMODULATION, FUS,B1 THERAPY. I am seeing an other movement specialist later this month. Hopefully I'll get a better response. Any suggestions? Thanks for your help.
I don’t think there are many. And also don’t think that is most important criteria. Too me, competence, experience, compassion and open mindedness top the list . Ask other local doctors for recommendations. I f your doc is unaware of DBS, FUS, etc. then he is living in a cage or perhaps he feels it’s not for you to think about at this time. I dunno. Ask him/her why he responded the way he did. I’ ve experienced quite similar with a different MDS and they are extremely competent and compassionate. Sometimes I think best if you are really interested in a particular supplement, research, not photos, video, testimonials but with papers from well respected medical institutions
I highly recommend a very bright and fantastic person (PD over 13 years) and her journey I highly recommend you watch this YouTube it may give you a very informed perspective IMHO May have already been recommended by another member
Https://youtu.be/6RFaBZyZ9pw
The skeptics guide for living with Parkinson’s
you’ll be glad you did.
Thank you I'll check it out. Appreciate your help.
Having trouble finding the youtube you recommended. Https://youtu.be/6RFaBZyZ9pw
Interesting YouTube. I found it. Thank you
I’ve personally experienced quite a bit of what she discusses and find it to be true. I thinks it’s important to be optimistic, and I feel we must be skeptical when extraordinary claims are made as Karen (Carl Sagan) stated. . I agree with her that exercise helps with symptoms I’m pretty sure on that as dx 6 years ago been a dedicated cyclist 3-4 times a week 20+ years at least once every week 50-100+ miles with a minimum of 5,000 ft ascent, steep. I live in SoCal. for past 6 months after 2 back fusions, disc replacement in neck I can’t exercise until ablation next wed Per surgeon. Symptoms have amplified, no doubt I hope to be exercising 6-7 days a week on Peloton as with a real bad back I’m restricted to stationary also 75 so I must be realistic about this
Lots of good and very nice people here Some with very good advice Some with bad advice Be skeptical, be smart
I think anyone reading this thread should view this YouTube I love the perspective
Https://youtu.be/6RFaBZyZ9pw
How can I get the information in English? How much did you take that helps to Eliminate the tremors?
How do you know how much to take?
This study used 1200 mg/day :
researchgate.net/publicatio...
A relevant study quote :
' Eighty-five patients with an established diagnosis of primary Parkinson's disease were randomly assigned to receive their usual dose of levodopa (mean, 381 mg daily) plus 1,200 mg of citicoline daily or half their usual dose of levodopa (mean, 196 mg daily) plus the citicoline. '
Citicoline is also beneficial for glaucoma and PwP have increased incidence of glaucoma as I wrote about here :
healthunlocked.com/cure-par...
Art
Thanks
thank you so much. Do you know how much of a dose to start on? It’s worth a try.
I’m not a dr. Dr Mischley (I believe) had recommended between 250-500mg per day. I recommend doing your own research and not listening to me. IMHO Art is correct though, I’ve been able to lower my C/L dosage by taking citicholine. Dr Mischley has written about it in her book Natural Therapies for Parkinson’s Disease.
Dr Mitchley may be right but she is doesn't make it particularly clear that she is not a medical doctor. I think she is a nutritionalist.
I believe you are correct about that with a doctorate. However,I found the book quite informative.
These are Dr Mischley's credentials "
michaeljfox.org/researcher/....
Here is a relevant quote from the article :
' Laurie K Mischley, ND, MPH, PhD(c), studied naturopathic medicine at Bastyr University, and epidemiology and nutritional sciences at the University of Washington. '
Art
naturalmedicinejournal.com/...
This study used 1200 mg/day :
researchgate.net/publicatio...
Talk with your doctor about it as a downward adjustment in levodopa may be needed and to also make sure it is compatible with every drug you are taking.
Art
Sinemet and Propanolol helps me!
My husband has been using the Vilim Ball for his hand tremor and it helps him a lot, he feels a lot more confident now. This is were we purchased it from, I know there are others in this forum that use it as well, that's how we found out about it. vilim.lt/en/vilim-ball/
thanks but i just found this 'copy' at Amazon for HUNDREDS of DOLLARS LESS!
Propranolol helps my tremors. It reduces it by 50-60%.
For how long have you been taking it. How much is the dose?
I take as required. I normally work from home. But if I have to go to work or attend a social event then I take Propranolol 20mg. It get me through for 3 hours. I take another 20mg if required.
Sounds like essential tremor. Propanolol is used for that.
I've had Botox injections into my wrist and elbow. It reduced the tremors significantly but each treatment lasts roughly 3 months. A little less grip strength is the only side effect.
WOW! great post! first i've ever heard of this treatment... How much of your tremors are reduced percentage wise?
I don't know. I could feel and see a difference but don't know how to quantify it. Before the botox, everyone could see my tremoring arm in constant motion. After the botox I still had motion but it was mostly internal, meaning I could feel a tremor but it was difficult to see.
thanks for the reply... and that's what i have now.... THOUSANDS of internal tremors daily -- mostly in both arms and hands, but literally ... everywhere in my body... my MDS neuro is a traditional western medicine type of guy... only 'pills and surgery' ... so i'm still looking for alternative solutions
B1 gave me nasty insomnia. I stopped immediately. Never again.
I feel like the shaking for my husband is worse if he is feeling anxious or is running late with his madopar.
I would ensure you don’t run late with medication. It might help to take it a lower dose more frequently.
For the anxiety try GABA. He uses sublingual KAL 25 mg. If that isn’t enough to calm nerves try a very low dose of clonazapam. He cuts a 0.5 mg one into 1/4 and takes that throughout the day on a regular basis. It takes a few days taking it regularly to calm the nerves.
And of course try and find anything that is causing increased anxiety and try and address that if it is possible.
Passion flower tincture is supposed to help
Non of the meds I tried improved my tremor so I finally decided on DBS procedure. I just had my programming for DBS device two days ago and haven't found the appropriate stimulation. It takes time so it helps tremor without other side-effects/ Basically, no common solution for everybody.
BTW, I exercise a lot everyday. Swim. hike, weights. ping-pong with intense HR.
Is there any medication with no side effects!! I don't think so!!.
I take a propranolol er. Does good for me.
could anyone clarify please about Propanolol.
My BWP was taking it before finally taking sinemet and was told NOT to continue with it. Still has hand shake though and would be useful if ok to combine.
I presume the people taking both have been prescribed by a medical person?
There are many different types of tremor. Parkinsons tremor is a resting tremor. Essential tremor happens when you do things, an action tremor. Propanolol works on action tremor not resting tremor. A person with pd could have an action as well as a resting tremor. It is the same drug that is used for 'stage nerves' by actors.
belladonna extract stops tremor
Care to give more details on Belladonna Extract stopping tremor?
Art
Before the discovery of Sinemet, Belladonna extract was the main treatment
It looks like they used a combination of very potent drugs to achieve benefit :
' Clinical Study of the Effect of Bulgarian Belladonna Root Extract
Modified by the Addition of Scopolamine, Benzedrine and
Phenobarbital in the Treatment of Psychosis with Post-
Encephalitic Parkinsonism '
It doesn't look like Belladonna was fully effective on its own.
Art
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