My Motion Disorder Specialist indicated that activity consumes dopamine. I have read that one way to increase production of dopamine is exercise. It is not unreasonable to conclude exercise can cause a demand of dopamine higher than your body can produce.
I quit TTFD because of tremor (I was walking 3 to 7 miles a day and my tremor was mostly while walking). I believe a temporary insufficient supply of dopamine (due to increased demand) was the cause of the tremor. I also developed knee problems and had to stop walking. My knees have mostly recovered. I am walking again and some of the tremor is returning.
I would not recommend my current plan: 17.5 mg TTFD one day a week and 1000 mg B1 hcl oral the rest of the week. I am not sure what I will try next. All I can say is 4 hours after taking TTFD, I feel great. (It is raining today so no walking today.)
FYI—1) Why do I keep trying TTFD: TTFD gives me a mood enhancing effect that B1 hcl oral doesn’t. 2) My sweet spot with B1 hcl oral is 1000mg (five months period). 3) My last trial on TTFD was 17.5 mg (3-month period). 4) JohnPepper indicates Fast Walking can reverse Parkinson’s by creating more dopamine-producing cells. I am not saying this is right or wrong. Maybe if I kept walking, my dopamine production will increase and there will be no temporary lacking.
11/13/23 Revised, Added:
My plan was to take TTFD once a week, but the mood enhancing effect did not last the whole day, so the next day I took TTFD again and on the third day B1 hcl oral. I am not sure what I will do tomorrow.
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This is interesting. Do you take B2, methyl folate and methyl cobalamin or SAM-e?
“ in a previous piece, I discussed some of the problems that could occur when supplementing with a particularly potent form of thiamine called tetrahydrofurfuryl disulfide or TTFD. Specifically, we examined how TTFD can temporarily deplete glutathione (GSH) and increase the recycling requirements (using activated riboflavin and NADPH). I also provided some recommendations for how one might improve this initial processing of TTFD in cells. Following on from that, we will now look at the next phase of TTFD processing to help pinpoint some of the reasons why some people suffer negative reactions when beginning supplementation. In short, the clearance of TTFD breakdown products requires adequate methylation capacity and many individuals who are thiamine deficient have insufficient methylation.”
“ recently had a client who explained that supplementing TTFD initially produced great increases in mental clarity, energy, and almost euphoria. However, within a few days, this shifted towards feelings of “depletion”, flatness, depression, and cognitive impairment. The individual described the symptoms as remarkably similar to those produced by other supplements which are referred to as “methyl buffers” – capable of affecting methylation capacity. For this same individual, the remedy was to supplement with extra methylfolate and methylcobalamin (vitamin B12) to increase methylation.
And so, might this be one of the mechanisms by which TTFD therapy can go on to “unmask” an underlying folate/B12 deficiency in some people? Dr. Lonsdale has documented cases of folate deficiency being “unmasked” in some people after undertaking thiamine therapy. I have also seen this on several occasions, and I suspect in some cases, it might be somewhat related.
Secondly, a lack of SAM-e can then theoretically produce neurochemical changes which are potentially responsible for sudden feelings of anxiety or depression that some people tend to experience.
This would especially apply to those people who already have compromised methylation, or tend towards lower levels of SAM-e, folate, B12, or a combination of all three.”
I’m taking prescription drug ALINAMIN F that I ordered without a prescription from Japan (17.5mg is 1/2 of a 25mg and a 5mg). It is Fursultiamine (another name for TTFD) as fursultiamine hydrochloride. I have an email from the manufacture stating that the hydrochloride comes off during digestion leaving the active ingredient TTFD in the body. 50mg TTFD is way too much for me.
Dr. C also told me that by doing a job that kept me moving a lot I needed more dopamine because I used it up.
In my opinion when you exercise, there is an increase in brain activity and blood flow in the brain, which can influence the production and release of dopamine. This higher release could challenge a PWP's dopamine production system as it has impaired and disease-limited function.
in a YouTube video Dr. C says that B1 is synergistic with levodopa.
Thank you for bringing up this important topic. You might be interested in the following webinar notes.
Professor Bas Bloem comments that: “It is common for people with PD to feel worse immediately after exercise, having more tremor and slowness – this is normal! It is not a sign that you are exercising too much, rather, it is due to the temporary exhaustion of your dopamine, and will return to normal after some time has passed. If it bothers you, you could ask your prescribing physician if you can try taking an extra dose of medication right before exertion.”
Thanks Michel. The attachment has a lot of good information! I read the 5 take aways and found Rock Steady Boxing fits every one of them. There are just some people that won’t exercise no matter what. I wish there was a way I could get more PwP’s to try it for a month and see if they don’t feel better or improve. I know it’s not a cure but it does improve your mind, your body, your strength and your wellbeing. It’s non-contact and we do many other exercises. I asked my husband just yesterday if he thought my progression has been since I went on disability 10 yrs ago and he said, “you’ve progressed a little but not as much as I expected”. I’ve been doing Rock Steady for over 17 years.
Thank you LagLag. Totally agree with you. I can't help thinking that if someone was discovering a PD drug that was as effective as exercise, we would all be begging for it. I just wished more neurologists were prescribing it to their patients (mine mentioned it for the first time during his latest consultation!).
I attached a link to on-line classes at Rock Steady Boxing (RSB). It’s not quite the same as being there but it will help if you do it 3 times a week and work out as hard as you can! Good luck! 🥊
Interesting post. My husbands neurologist similarly say exercise produces 40% of his dopamine but after exercising he is frequently exhausted and ‘dips’ ……????? Never understood this
After my husband has 45 minutes of PT he is usually tired to the point of exhaustion. Sometimes, even needs to rest the next day. Yet, exercise is good for the brain, dopamine, muscles, helps with balance, and keeps up his strength. Sometimes, though after resting for an hour he has more energy. Depends on the day I guess.
Even people without PD can be exhausted and shaky after extreme exercise. Maybe it’s not just dopamine shortfall. There is possibly also shortfall of glucose to muscles?
“Physical activity can lower your blood glucose up to 24 hours or more after your workout by making your body more sensitive to insulin. Become familiar with how your blood glucose responds to exercise. Checking your blood glucose level more often before and after exercise can help you see the benefits of activity.”
That’s a good point. Also could have something to do with not getting enough protein. We lower our protein so the meds will work better but a lot of us don’t replace that protein for muscle building. 🥊
True. I’ve been subbing out rice for white quinoa slowly so no one notices. It is a complete protein. Apparently very good for you and it is perfectly acceptable as a rice replacement.
If you think about it, exercise causes lots of things to increase/get worse short term--heart rate, blood pressure, blood sugar...and these are all things that if you exercise regularly, over time, improve.
Also, normal (non-PWP) exercisers get shaky too after a workout. That temporary lowering of dopamine affects everyone.
My point is, it's not a bad thing--just an indication that you are working hard!
(Disclaimer: this information came from my trainer :o)
In this context, how should "exercise" be defined? Is it something like running which has a relatively simple motion, but uses up lots of energy? Or is it something like a tap test (repeatedly moving the thumb and index finger together) where little energy is used up, but the number of individual motions is similar? Just a guess, but the amount of dopamine used up could be a function of the number of neurons fired.
Exercise and dopamine. I have early onset akinetic Parkinson’s, which was diagnosed when I was 48. I am now 54. I’m incredibly lucky to not have resting tremor, but I also have freakishly good balance. The studies are pretty clear. Regular fairly intense cardio for 45min. about 3x per week is the only thing empirically proven to slow Parkinson’s progression. Does it use up dopamine and make my right side look like a victim of Medusa? Yes. However; if I push to finish my exercise and take a 15-20 minute nap I feel significantly better about everything. Besides other activities, I do Bikram yoga. Some days I do really well. Other days maintaining postures just ain’t happening, but you do your best. My take on it is that A: the exercise might help clean out errant waste in the brain and help it fend off the protein mutation B: The brain gets tired because it takes extra work to utilize levodopa. It’s like being used to communicating with text and then having to use snail mail. Exercise strengthens the brain as well as the body. Giving it the muscle to use levodopa more effectively. C: A tired brain tries to lighten its load by shutting off pathways to smaller, less necessary muscle groups. Eventually it forgets how to talk to them and the muscles themselves atrophy. Balancing requires micro adjustments of many of these less required muscle groups, as does coordination. A stronger brain will shut down these pathways more slowly. I find that yoga is extremely helpful in forcing the brain to maintain these smaller muscle groups and in generally improving the muscle tone of the brain to maintain pathways that preserve balance and coordination. Essentially, when you exercise you are utilizing a down payment of dopamine to get return in being able to maintain dopamine production, brain health, balance and coordination in the future. To build muscle mass you have to literally damage ie. Create microtears in your muscles. The body repairs these tears and grows more muscle to prevent more serious future injury. That is my take on exercise and Parkinson’s anyway.
Taking a picture with left hand, while balancing on left leg, of right hand hold leg up
My plan was to take TTFD once a week, but the mood enhancing effect did not last the whole day, so the next day I took TTFD again and on the third day B1 hcl oral. I am not sure what I will do tomorrow.
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