I swore i would not take prescription drugs..ive tried everything natural for my hand tremor but it seems to be worse..its driving me crazy.
Hand tremor: I swore i would not take... - Cure Parkinson's
Hand tremor
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Rosabellazita
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98 Replies
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why not take prescription drugs for your pd. Would you do the same if you had cancer.
They have sife effects over time. And stop working after a while anyway. Why take something that is going to stop working and leaves you with something else ?
Side effects are not for certain and stop when you stop meds. They are not permanent. In my 11 years with pd i have had all types of side effects all stopped when i stopped the meds. I take requip and carb/levo with no side effects. Just some down time. I do not have tremor which i believe to be the worse one of all. Please consider some meds if they don't work you can stop but if they do your life will improve.
I totally agree but sometimes we need alittle help. Just don't over do it or start taking more.
I felt the same way. I have settled for carb/levo. I am also trying now a thiamin treatment.
All along since first dx, my primary concern was tremor and how to stop it.
parkie13• in reply to
How long have you been taking your thiamine have you noticed any Improvement?
• in reply toparkie13
I feel confident and sure my vision has improved. I am optimistic and hopeful my tremor is somewhat reduced and that I am not imagining this due to my strong desire to see improvement. It needs more time and watching. Been only two weeks.
Starting Monday I am changing my B1 vitamin to "...oral allithiamine. It achieves the same concentrations (and cellular activity) through oral administration as IV or IM thiamine Hcl. So, oral allithiamine at a dose of just 100mg twice a week should be able to replicate the results of this study."
see my earlier posts on the subject of B1 therapy
Rosabellazita• in reply to
U are taking a drug now? How much carbo levo?
• in reply toRosabellazita
50/200 C/L, three x day
Boyce3600• in reply to
What part of the country do u live in? Is your thiamine treatment from ur neuro or on ur own?
• in reply toBoyce3600
On my own in New Mexico, USA.
B1 Thiamine therapy
Doctor Costantini remembers that helping his very first patient, afflicted by an acute ulcerative, set him on the path towards countering Parkinson’s disease. He advised her to inject herself with two mg of Thiamine per week. “In the first 15 days of the therapy the patient was relieved of exhaustion, irritability, pain in her feet and calves”– says doctor Costantini- “Why is this? Because there is no medicine or drug that is able to affect all of the organs, whereas all of the organs function thanks to Thiamine.An important detail”,adds doctor Costantini, “the Thiamine therapy brings no collateral damage with time”.
ultimaedizione.eu/costantin...
Oral Allithiamine
raypeatforum.com/community/...
Since most people would not have easy access to thiamine injections, an alternative is oral allithiamine. It achieves the same concentrations (and cellular activity) through oral administration as IV or IM thiamine Hcl. So, oral allithiamine at a dose of just 100mg twice a week should be able to replicate the results of this study.
ncbi.nlm.nih.gov/pubmed/978282
"...Oral administration of lipid-soluble allithiamines [thiamine propyl disulfide (TPD) and thiamine tetrahydrofurfuryl disulfide (TTHF)] rapidly increased thiamine activity in whole blood, red blood cells, cerebrospinal fluid, and urine in normal and thiamine-deficient subjects. These thiamine congeners also restored red blood cell transketolase to normal in alcoholics with thiamine deficiency. Such repletion equaled that produced by parenteral, water-soluble thiamine hydrochloride (THCl) or thiamine pyrophosphate (TPP). Oral administration of water-soluble thiamines (THCl, TPP) neither elevated thiamine activity in biological fluids nor restored transketolase activity to normal in alcoholics with thiamine deficiency presumably due to their rate-limited intestinal transport. Oral administration of TPD eliminated lateral rectus palsy in patients with Wernicke's encephalopathy. Orally administered allithiamine vitamers are therefore recommended for prophylaxis and treatment of thiamine deficits because while having essentially the same biological properties as parenterally administered water-soluble thiamines they have not produced any untoward effects after long-term administration and are far more efficiently utilized."
Boyce3600• in reply to
Wow. Fabulous info. Thank you. I am saddened that majority of neuros do not seem to want to or don't know to help with alternative therapies.
To the best of my knowledge there is no medication on the market that can slow down the progression of Pd and none that can overcome the tremors. Having said that, and here I am going to annoy a lot of people; Have you thought of doing some exercise? There are many forms of exercise that have had very positive effects on the progression of Pd.
I have been able to overcome many of my Pd symptoms and now live a normal life again. How many people in this world have done that by taking medication?
My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992 when my symptoms, most of which were being treated with medication, had slowly got worse and worse. Only when I started to shuffle was a neurologist able to diagnose the Pd.
Because of severe back problems, I had been going to the gym every day, six days of the week, since 1968 and until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I therefore decided to stop going to the gym.
Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now in 2016 and live a 'normal' life, full of purpose!
Many Pd patients think that they will not be able to do Fast Walking! I have found that many other patients, who had walking difficulties, even those who were wheelchair bound, have been able to walk normally, once I have shown them how to use their conscious brain to control the movement. I go all over the world successfully showing hundreds of Pd patients how to walk properly, with only three exceptions. One could not stand on his own legs and the other two were unable to understand how to use their conscious brain. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include you!
Many neurologists throughout the world, who have never examined me, have told their patients that I do not have Pd and should therefore not listen to anything I tell them. I have been examined by four different neurologists, the last of which was in 2015, and they all told me that I have Pd. The problem is that I look so well and because there is no cure for Pd, I obviously don’t have Pd. It is not my fault that this is happening to me, but I am determined to share my good fortune with every other Pd patient, at no cost to themselves
Obviously there is a lot at stake here, especially for the pharmaceutical industry, who have spent billions looking for a cure, and neurologists, because I have not needed to consult a neurologist since 2002, other than the one I asked to examine me in 2015.
View my website - reverseparkinsons.net and contact me from there.
Walking for my hand tremor? Its a bad one i hope the walking will help. I dont want to start meds.
I really believe in your philosophy John and think of u every evening when I walk / run around the park
I hope you are not doing what you say here. What I am about to tell you has not been proven in any scientific studies, but that is because no such studies are carried out because they don't have anything to do with medication. The reason is obvious!
I have found that I was doing 90 minutes of gym every day, six days of the week and my symptoms were continuing to get worse, at an increased speed. So I stopped going to the gym, because it took too much time and it wasn't getting anywhere. My late wife persuaded me to join an organisation called "RUN?WALK for LIFE", because so many people doing the walking were overcoming many problems, including obesity.
After 3 months of arguing this point, I could not see how 3 hours of fast walking every week can be better for me than 9 hours of running, step-climbing, rowing, cycling and weight lifting? That sounds reasonable to me, as a man. But I gave in, after 3 months, and joined, just to prove to her that she was wrong.
Guess what? After 4 months of walking as fast as I could, my times had IMPROVED from over 10 and a half minutes a kilometre to less than 9 minutes. An improvement of nearly 20%. How can that be? After 3 years, many of my symptoms had improved so much that it no longer looked as if I still had Pd.
A member of my erstwhile staff noticed this improvement, one morning in a shopping mall. He had not seen me for six years. My family had not noticed it because it happens so slowly. I still have Pd, but at such a low level that I can live a normal life again, as long as I keep on walking. I did a 5 kilometre walk this morning at nearly 7 kilometres an hour. I am taking it easy because I had atrial fibrillation a month ago and had to stop walking for a while. That was not caused by the walking but rather by the number of hours I still work every day on my computer, communication with Pd patients all over the world. I have been busy planning a 3-month tour speaking in England, Ireland and the USA. I had been working upwards or 12 to 14 hours a day, which at 82 years of age proved to be a bit too much. I wasn't sleeping very well because of the worries about all the organisational problems.
Getting back to the walking. If you are not walking as fast as you can, you do not appear to produce GDNF in the brain, and that is what I THINK has caused my brain to get better. GDNF, as its name implies, repairs the damaged brain cells. If we walk every day, we do not allow our muscles to recover and they start to eat themselves up and get smaller. Nit many people with Pd are able to run fast for an hour. Not many 'normal' people ae able to do that. But I ma able to walk fast for one hour, every second day, without even getting breathless. We have to SLOWLY BUILD UP TO THAT LEVEL!
I am getting back now to good health again and have cancelled most of the tour plans. In two months time I will be back to my previous level.
Hi John, when you say: "If you are not walking as fast as you can, you do not appear to produce GDNF in the brain, and that is what I THINK has caused my brain to get better". Can you prove this? What's the link?
Hi Bertilo. There have been no studies done on fast walking. If I had the money to do a study, it would have been done many years ago. I am trying to find someone or some organisation to do this, but because it does not involve taking medication and because I no longer need to take any Pd medication there are no drug companies interested in doing such a trial.
All I can tell you is that when I was doing 90 minutes a day in the gym, which included running on the treadmill for 20 minutes every day, my symptoms continued to get worse, at a faster rate. When I gave up the gym and started doing fast walking, my symptoms started getting better. This has happened to other people as well! So, I am sure that the reason why tis has happened to me is because of the production of GDNF. GDNF stands for Glial Derived Neurotrophic Factor. Glial cells are the worker cells and they have something to do with the cells that produce the GDNF. Neurotrophic means build or repair neurons. So these are natural proteins that help to repair the damaged brain cells. There have been studies done on this.
The same here 
I also was going to suggest exercise. Although I am on three Pd meds and have had DBS, every day exercise for an hour is bringing amazing results. In fact, it seem to help the rest of my symptoms that dbs and meds don't touch. Reality is that sometimes (often) it takes multiple approaches to manage this illness. I was diagnosed almost 9 years ago, and folks who don't know me often don't realize anything is wrong. I go to a movement disorders clinic for my medical care. Also, I've participated in several timed trials. My main advice? Exercise and a medical specialist!
Nice to hear this good news. Maybe you could have done that before having the DBS?
Excerise for hand tremor?
What excerise would help my hand tremor
Exercise will help your hand tremor. As you exercise your brain is stimulated to make it s own dopamine. Before exercising check your tremor then exercise for 40 min then check it. You'll notice a difference
The best type of exercising for your hand tremor and PD in energy is fast walking
What about cycling?
I've heard that Cycling is great
Rosabellazita
Have you tried Rock Steady Boxing? It's non-contact boxing strictly for PwP's (persons with PD). RSB was started by a former county prosecutor with PD. His friend encouraged him to exercise so they started boxing & found that it helped his symptoms so that's when they decided to help others & opened RSB. There are now over 350 affiliates & neurologists are encouraging patients to start RSB as soon as they are diagnosed. I've been with RSB over 10 yrs.& it helps slow the progression. I take very little meds & have not had to increase my meds in several years (8 yrs). I actually take 1 less C/L than I did 3 years ago. I was diagnosed 13 years ago. Go to the website & see if there is a RSB near you. Also watch some of the videos (especially the one with Leslie Stahl) & look up my testimonial under Debbie (purple shirt). If you have any questions, let me know. rocksteadyboxing.org
Try some red pepper, to me it impulse the L-dopa pills.
injest it?
I think alittle sinamet won't hurt you. Your Dr may prescribe 25/100 3 X day but if you just take half of a pill twice a day and exercise lots you'll feel alot better
Thx. I may try it. Just worried about how to stop it if i decide to stop
Alittle sinamet won't cause dyskinesia. I know how u feel as I was the same. Exercise is the key
what about over time?
What do u mean by overtime?
Long term use
What happens over time is a bit subtle, but I'll try to explain it clearly.
If you start taking c/l now, you should start to experience some symptomatic relief from now onwards, and you may start to experience some dyskinesia after, say, five years (i.e. 2022) or more.
If, instead, you start taking c/l in three years time, you will miss out on three years of symptomatic relief, and you will still start to experience dyskinesia in, say, five years (i.e. 2022) or more. So you will have missed out on three years of symptomatic relief, for no offsetting benefit!
Here is the link to the scientific study which demonstrated this. It compared some patients in Ghana (who started taking c/l roughly three years after diagnosis - due to financial constraints) with some patients from Italy (who started taking c/l immediately after diagnosis).
ncbi.nlm.nih.gov/pubmed/250...
If you continue to depend solely on medication you are on a one-way street to becoming unable to move.
If you start to do some energetic exercise as well as taking medication, you CAN reduce the need for medication, while you start to get better.
I agree, John.
I would be more specific regarding the type of exercise though. Rather than any type of "energetic exercise", I would recommend high-cadence exercise, especially high-cadence cycling or high-cadence walking.
What about excercise and NO meds?
That should be a goal, not an immediate action. When you exercise properly, you should start feeling better. When that happens, you can then start to slowly reduce your medication, but I would suggest that you consult your doctor. Don't let him/her put you off, just use your common sense. If you do want to reduce your meds then do it slowly. Reduce by half a tablet at a time. So if you are taking 8 pills a day, then for the 1st week take 7 and a half pills. If you find that you get an unwanted reaction, stick to the plan and see if that reaction goes away. If not then go back that half pill. Otherwise stick to the plan and when you get to the point where you cannot cope with the last reduction then go back one half pill and stick at that level for at least 3 months, then try another half pill.
I never started the meds. I was prescribed c/l 25-100.3x a day. I was thinking to try a half pill twice a day.
?
Try half a pill or even 1, twice a day and see what it does for you. If it does nothing then stop taking them. If they help you then keep on taking as few as possible. If you start the walking and as you get the speed and time up to the one hour mark then you can try to reduce them, half a pill at a time.
How long should it take to see a difference (if any) 2 weeks?
I am not a doctor, so don't just take my word for it. Logically, if a medication is designed to hide certain symptoms and has not shown that it actually does that within a few days, then it doesn't work for YOU!
I know your not a dr. but I like to hear from you. I stopped the sinemet called neuro now they want me to try amantadine. for tremor.
Ask the Neuro for a guarantee that it works and what the side effects are.
I started sinemet april 30.th 1/2 pill morning at 6am. 1/2 at nite at 7pm. Tremor 3x worse tonight which is wed may 3rd.can i just stop it after taking it for onky four days?
Get your doctor's opinion first.
I don't see why not! It isn't doing you any good.
So your saying either way one will still gave dyskina??
If you are one of those PwPs who will experience dyskinesia (and not all PwPs do) then you will get dyskinesia whether you start c/l now or start c/l sometime in the future. And you will start to get dyskinesia at the same time either way (i.e. delaying the start of c/l will not delay the start of dyskinesia). That's what the Ghana trial demonstrated.
The dyskinesia will stop happening (and the symptomatic relief will stop also) if you stop taking the c/l.
I recommend toast.
6 out of 10 Neurologist recommend toast for their patients who don't chew toast.
For?
For Parkinson's, there is no evidence that it works,but there's no evidence that it doesn't work either.
Who don't chew toast??
Ha ha real funny
try the ace bandage
Just curios, have you tried CBD or THC?
Cbd. Didn't see ant difference
But was it prescription CBD or something otc?
Otc
Exactly why U may not have had relief
The otc oils & vitamins are not regulated
U can not accurately measure how much ur getting
And they're usually much less concentrated
Where do u live ?
R u able to get medicinal marijuana ?
( or any marijuana )?
Not in va
Do u have access to any marijuana ?
A little hit here n there has helped
Take the edge off
So many ppl I know use it for a variety of things incl PD , ms, etc
it makes me paroiod
I felt as you did. No way was i taking meds! My concerns were unfounded, based on
opinions of others, not science.
I have been on madopar 150 mg 3 times a day since Oct '16. Best thing i ever did. No side effects.
A neuro told me its not the medication that stops working over years, its the progression of the PD.
All the best with your decision making.
Levodopa does not stop working and the study at the link below found that people that began taking levadopa did better than those who delayed taking levadopa.
Have u tried CBD oil ??
If ur in a legal marijuana state
You can get it in vap form
It has worked for many
I hope this helps
Best regards
C!
Va.
Some people are helped by straight cbds. When ever I through my back out the Dr.s would always give me muscle relaxers and pain med, you needed both. They work hand in hand. Also I have learned that even the light side of toast needs to be decarboxylated. I wonder how many do?
Fast walking causes the brain to produce a protein called GDNF, which repairs the damaged brain cells. As you repair more brain cells, the Pd is continuing to damage more brain cells. So yo have to create more GDNF and repair more cells than the Pd is damaging. As you repair more brain cells then all the symptoms slowly get better. Tremors are very difficult to get rid of. I don't tremor anymore, unless I am stressed. Then, everything goes wrong again, until I get rid of the stress.
I hope this helps you!
Im about to give in to 1/2 carbo/levo 25/100 twice a day. Cant take t his tremor any longer.
Ha!!! That's all???
I take c/l every 2 hours !!!
Plus Amantadine
Ask ur dr about Amantadine
It has helped with my dyskinesia
Be well
C!
should I try the sinemet I hate the thought of having to be weaned off of a med. it is 25-100 3x a day. maybe ill try half of one twice a day. isn't this what you use to take?
I take half a 25/100 sinamet twice a day. It works well but I have an hour in am before i take my pill when I'm feeling anxious and the same in afternoon. I exercise at 9pm and sleep from 11 to 7....off and on. I get about 7 hrs of sleep but wake every 2 hrs to go to the bathroom. I also take Chinese nutrients, LDN and Azilect. I never took a pill in my life til I was diagnosed with PD. So I find it hard to take any medicine or pill. I also find my stomach is very sensitive. But on the whole I'm doing very well and am thankful. I believe in John Peppers advice and try and follow his example. Good luck to everyone and laugh
Is it true i will have dykinsia if i take the carb/levo?
See my earlier comment (just above the toast clip).
Dyskinesia is not a certainty. It is a possibility.
If you take c/l, and continue to take it, there is a possibility that you will experience some c/l induced dyskinesia some time in the future.
The dyskinesia will stop (and the symptomatic relief will stop) when you stop taking the c/l.
In my opinion yes but it can be very slight depending on how much sinamet u take . Juseat take half a pill twice a day and exercise. Read John Pepper's book and Dr Norman Doidges book
Should read......just take
I cannot give you advice on medication. I can tell you what I did. In 1992 I was prescribed Sinemet and Simmetrel for the first two years. I cannot remember what the dose was. In 1994, the neurologist stopped both those medications and put me onto Eldepryl, which is similar to Azilect, saying that the manufacturers had claimed that it could slow down the progression of Pd. He asked me if I was prepared to try it, and I said yes. I was on the Eldepryl for 8 years, at which stage I decided to come off it and have been off any Pd medication ever since.
did the med cause dyskinesia? after 8 yrs
No! MAO-b inhibitors do not cause dyskinesias.
If i take sinemet will i have dykinsia for sure?
It's not for sure. See my two comments above.
I think it depends on the quantity of sinemet you take!
Have you tried toast, spread with cannabis infused coconut oil. Yeah, me neither.
Serenity you are nuts....good for a chuckle....but someday there will be a cure! In the meantime you eat toast.
Where do you do your fast walking? How long do you recommend for someone just starting? Would you do both walking and a stationary bike?
Rosabellazita
Rosabellazita
I've been reading all your posts about meds & can tell you are very fearful of meds as well as your possible diagnosis. We've all been there. I was diagnosed 13 years at the age of 46 & I was not taking any medication. It's a scary thing, but the best thing for you is to accept it & learn to deal with it the best you can, which is what you are doing by joining this website. My motto is "Accept it & take Action". Are you currently exercising? If not, start immediately, it's one of the most important things. Make sure your diet is filled with lots of antioxidants and also fiber for constipation. Drink lots of water! Research supplements. You may need to start on a low dose of meds to help you move a little easier. There are a lot of good exercise programs out there nowadays for PD. Try one one or more soon, like this week, 3 days a week. In a month or two you should start feeling better. Exercise programs to try: Pedaling for Parkinson's, Dancing, John Pepper's Fast Walking, Bailey's Crossfit, or my personal favorite, Rock Steady Boxing (RSB), it's a non- contact form of boxing that's a lot of fun, strictly for PwP's & a good support group. Check it out to see if there's one near you. rocksteadyboxing.org
you are right .
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