Hello, all! I was diagnosed in August of 2018. I developed a tremor in my left hand in January of 2018, which quickly progressed to many other PD symptoms (no left arm swing, left leg drag, debilitating fatigue, urinary urge incontinence, memory issues, left side dystonia). I had been experiencing mild but increasing bradykinesia in my left hand for probably close to two years prior to 2018 but didn't realize that's what it was.
Vitamin B1 (which I started in November of 2018) gradually eliminated all of my symptoms with the exception of:
1. Tremor, bradykinesia, and transient dystonia in my left hand/arm
2. Internal tremor that I feel in my head at times
3. An occasional very mild tremor in my left leg
I take other supplements besides B1 but nothing unusual or Parkinson's-specific yet.
I haven't gone back to see my neurologist in over a year because it was frustrating and seemed pointless, as she wanted to put me on medication that I didn't want to take. I'm 54 years old, and have *always* taken a natural approach to my health.
I'm hoping other PWP who take meds can give me some insight. I have some Zandopa, and I've tried it on a few occasions, but it didn't seem to do anything at all. Does it have to be taken regularly every day for a certain period of time in order to see results?
Most of the time I don't feel the need for any medication, but occasionally the tremor "gets to me" (I'm sure you all know what I mean), and I would love to have just a little bit of relief, but I really don't want to take something at certain times every single day unless/until I get to the point where I truly can't cope or function. Are PD meds basically all or nothing (i.e. either I must take something constantly or take nothing at all)? I've also heard many people say that tremor is the hardest symptom to treat, even with pharmaceuticals.
Thoughts?
BTW, this forum is so welcoming and helpful, and I'm thankful for all of you. 💜
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1LittleWillow
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The positives after B1: no bradykinesia, I cut my food with a knife, no button difficulties, brush my teeth now w/o needing elect brush, more strength. Getting in and out of bed, turning over is easier. No more constipation. Parkinson's progression stopped. Suppressed most motor and non-motor symptoms...
Entering my 8th year post diagnosis and have not fallen, not once, to the surprise of my neuro.
New schedule and new neurologist (as of December 2019), now I follow this regimen:
4x day, C/L 25-100mg. Bedtime 1- C/L 50-200mg ER.
2 x day (8 am 1g, and 2 pm 1g) vitamin B1 (as thiamine HCL) 500mg easy swallow capsules.
Pramipexole 0.5mg - some tremor relief, especially night restless leg.
Magnesium L-Threonate 2,010mg per week.
B1 Thiamine therapy reference / stop progression, suppress motor and non-motor symptoms:
(Thiamine HCL is oral substitute to injecting B1) 2 x day (morning 2g and at lunch 2g)
Doctor Costantini strategy that I find helpful "thiamine hcl stops the progression forever...".
Parky people say the first five years is your honeymoon stage with Parkinson's. After that, progression more rapid.
I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol. –
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”.
I am in my 14th year dealing with PD. I take only meds prescribed by my doctor and nothing else.
My meds are as follows.
3 25/100 C/L 5 times a day every four hours 4 am to 8 pm
1 25/100 C/L 4 times a day every four hours 6 am to 6 pm
1 5 mg Selegiline per day
1 300 mg Gabapentin 3 times a day for foot pain (neuropathy)
1 2 mg Ropinirole 3 times a day
I have went through hell and put my wife through hell over the past 14 years with side effects. But most were mostly caused by my first Doctors lack of experience. I change doctors 6 years ago and i am now doing better now than i was in my 6th year. These meds i take now are a result of trial and error over the last 6 years.
I get up at 4 am i am stiff and have pain in my hands and generally feel poorly. I take my meds do a little stretching and within 45 minutes i am ready for the day. I go all day working in my shop mowing and working around the house.
I am 66 old male.
I am blessed with good health i don't catch colds , no allergies , I have not been sick for a least 5 years. No pain at all except for PD.
Hi andrehypnotic, you can get vitamin b1 hcl 500mg from Amazon, (I am in the U.K.) I also get 100mg now as I don't seem to tolerate high doses, I have tried but had problems taking 2x 500mg per day I don't know why.
I don't know if it will do me any good but I take just 100mg at breakfast and 100mg at lunchtime.. (forgot to add the supplier is
G & G food supplies Ltd, East Grinstead, Sussex RH 19 1 RL )
I don't know if you were asking me andrehypnotic re ''what works for tremors'' but I am on sinemet. It's not perfect but helps. I Tremor when it wears off but I can't increase my dose as if I do I get very nauseous even sick so it's the lesser of the evils!
I have recently (last month) started on Pramipexole extended release. I have my first follow up with the neuro ( a video call, due to lockdown) next week. Mostly its been good. The side effects have been modest and diminushing. The benefits have been appreciated, although also diminishing or at least fluctuating. My left arm tremor had improved but is still the symptom that bothers me sometimes, so I will be discussing whether dose increases or other options can address that.
I am taking extended release - so just once a day. I have just titrated up to 0.78mg (0.26 for a week, then 0.52 for a week and now 3 weeks at .78). Much less rigid (didnt realise I was stiff, until I wasn't and can now bend at the waist to put the dog bowls down). Also, can and do lie on my back at night, where previously could only lie on my side. Tremor reduced, but not eliminated all the time. Mostly bradkynesia gone - quite fast touch typing. My wife says I'm a much nicer person - I say "thank you" all the time now.
But I seem to have started to adapt to it a bit - at least my tremor control is less good than I thought it was a couple of weeks ago
The situation is potentially confused by me now having missed 2 infusions of the trial drug in the SPARK trial
Hey 1LW. I’m down with the natural approach too but like you mentioned it doesn’t stop the tremor. For me and we’re all different with our approach to meds, less is more. I hate the side effects of C/L. I was taking 2 25/100 3X daily. Helped the tremor but I was a zombie. Now I take the lowest dose of Rytary once in the morning with 1 mg of Rasagaline. B1 1000 2 daily. If the tremor comes back one more Rytary. 23/95.
Here’s my mind set. The more drugs you take the more you need. They ALL have side effects.
The best drug of all is exercise. I do yoga for my brain and flexibility. Spin bike 5Xweekly for 45/50 minutes at 80 rpm.
You mentioned your symptoms coming on rather quickly. I’m wondering if you have an exercise regiment?
Join the club. I have some good news for you and some bad.
There is something you can do about most of your movement symptoms but it involves doing regular exercise. The bad news is that no medication gets rid of any of the symptoms, but some can hide the tremors for a while, but you have to take more and more pills to maintain that until your body gets used to the pills and you can't get any relief.
I have had Pd symptoms since 1963. I was only diagnosed with Pd in 1992, I was prescribed Sinemt and Symmetrel for two years and they did nothing for my walking. I changed to Selegiline, which effectively gives you more dopamine and you more or less go into a hold situation.
At the same time as I took the Selegiline, I started to do Fast Walking. And by 1998 I was almost back to normal with many of my more worrying symptoms. In 2002 I came off the Selegiline because it gave me very high blood pressure, 290/160. I have not been back on ANY Pd medication since then.
If you would like to learn more you can look me up on Google or you can go to my website reverseparkinsons.net and contact me. I will send you my videos and a whole lot of information for free. You can also buy my book from Amazon and look me up on Google.
All motor skills are capable of being controlled by with the subconscious or the conscious brain.
I don't know if all movements that are normally controlled by the subconscious brain, but I know that the control of walking can most certainly be taken over by the conscious brain, hence shuffling can be immediately overcome by consciously taking control of the walking.
My husband is almost 70, celebrating in Lockdown in London as much as we can! DX in 2015 by Neurologist and put on C/L. Although he had hardly ever been ill I think the diagnosis and told it was progressive led him to believe in a short time he would be incapacitated and in a wheel chair.
Fast forward til present, still on C/L 100/25 3 times a day plus a half dose.
B1 thiamine 2 x 500 mg twice a day, in June 2019
Only added in Rasigiline Dec 2019 which helped even out dopamine but increased face dyskinesia so Neuro added in Amantadine which have been brilliant!
Still exercising mostly walking now due to Lockdown, walking about 3 miles a day.
He’s added in other supplements but not Mucuna and doing Ok for the moment.
It’s such a personal decision with meds but if they don’t suit you are able to slowly come off them and you need to find a Neurologist who is happy to support you, if you can.
We changed to another Neuro last year and we really feel he listens well, knows my husband takes supplements and was happy for him to keep taking them.
Age 68. Diagnosed 1 year ago. Co-Careldopa 25/100 three times a day. Symptoms- left foot dragging and left hand tremor. Meds worked quickly and cleared these symptoms also energy restored. Flexible on timing based around activities. E.g. music performance. Improved quality of life and basically carrying on as did before diagnosed. Wish medication for other health problems worked as effectively.
I was diagnosed 5 years ago I have many of the same problems as you, I take 195mg Ratary 5 times a day, entapacone 200mg 4 times a day, mirapex .5mg 3 times a day. I run 5 car dealership and function normally daily. Don't be afraid of the drugs the drugs don't cause additional problems its the progression of the disease that renders the drugs ineffective then you have to up the dose to get the same result and eventually the side effects start. Your losing time that you could be feeling much better by waiting that you can never get it back.
I also take Sinemet as needed. I cut the 25/100 pills (smallest dosage) into halves and take it when I’m feeling like I need it, which is usually a couple times a day. I feel the effects kick in pretty quickly within 20 minutes. It helps me with bradykinesia, tremor, dragging leg. I recommend it take care
Hi, I was diagnosed at age 55 in 2015. I have similar symptoms to you. Because we have a degenerative disease and nobody knows how your body will progress or at what rate, I decided I wanted “this moment” to be as good as it could be. I found by reading and titrating the medications for my body myself that the combination that works for me is 1 rasagiline per day, 1.5 c/l 4 times per day, 2 300 mg gabapentin 3 times per day. I take other things for heart issues that are also Parkinson’s related. I try and exercise or walk (10000 steps) everyday. Golfing is fantastic because the distraction from symptoms is so great. Interesting fact, I live in Canada and once when had to replace my c/l down in California, I did not get relief from my symptoms? I was so relieved to get home and get back on the Canadian version. I have always been the picture of health and from the outside people may not see what I am dealing with. I did seem to have a 5 year honeymoon period and now, I wake with pain, tremor, stiffness, etc. I start my meds at 10am and finish at 11 pm, because this gives me a window of time where I feel pretty good, from about 10:30 am to about 7pm, not bad. The most dramatic difference in my over all health came from my acceptance of my diagnosis. Once I accepted it, I stopped stressing over everything (real bad for symptoms) and I even went back to sleeping better! Cheers, I hope you feel as good as you can for a long time!
I started with heart palpitations that I noticed myself at random times. It was diagnosed as tachycardia at first and then eventually, the doctors decided it was aFib. I tried many drugs from beta blockers to calcium channel blockers till one doctor prescribed Flecanide. That is the one that worked for me without terribly strange side effects and I feel better (plus one aspirin a day). I also had real bad hypotension before I was on this med. I am so relieved I am at the stage I spoke up when the medications didn’t work for me and the doctors kept working with me until we found something that helped. Cheers, hope things go well with you!
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take care 
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