A question

[Parkie1]

I put this question to the B1 Facebook group. No one seems to have the answer, but a number of people are interested. Can anyone help! Dr Constantini wrote. "Off" days without thiamine may become more challenging as your body becomes acclimated to thiamine therapy." I've found that "off" times, which are several times per day, are becoming more severe. Almost unbearable..yet I have improvements, e. g. sense of smell, energy. What might account for this? Need for increased meds? I've had very little increase in 2 years

[crewmanwhite]

B1 is a symptom reduction strategy but does not address the causes of PD.

To improve and reduce off days, you need to find the causes of your symptoms then reverse those.

Lots of details in "Rethinking Parkinson's Disease".

[Parkie1 in reply to crewmanwhite]

Thank you. I have that book , and it's huge! A lot of reading, but I will make a point of searching through it .

[Dap1948]

I don’t know what you mean by “off” days without thiamine. Do you mean taking a break from thiamine? When I answered the question in the Facebook group, I thought you meant “off” times and pointed out that increased “off” times while on B1 can indicate that the dose is a little too high. However, I might not be answering the question!

[Parkie1 in reply to Dap1948]

Hello Daphne. I'm sorry to cause confusion here. I'm struggling to get the sweet spot, and getting frustrated, so I'm probably not making good sense, so I'll try to explain as best as I can: I've had motor fluctuations for several years and had difficulty in shortening "off times " due to not tolerating adjunctives, apart from Neupro, so, whilst B1 clearly gives me energy, and sense of smell has returned, my "off times" have become severe: rigidity ,slowness and pain have increased during the 18 months that I've taken B1 to the degree of unbearable at times. Cobeneldopa has been increased by only 1 50mg tab, so my question was " might I be short of levadopa, and need more meds?" (amantadine is suggested by my consultant) I wrote without noticing that Dr Constantini said" Off days ", not "Off times " when he said. " Off" days without thiamine may become more challenging as your body becomes acclimated to thiamine therapy" so I realise my mistake. I'm reluctant to take drugs to counter side effects of another and so was trying to avoid having to take amantadine. I was hoping that B1 would help me avoid going down that path, and desperately trying to get the dose right. Very difficult ,but I don't want to give up. I hope I've made some sense here 🫣. Any suggestions are appreciated.

[Dap1948 in reply to Parkie1]

You don’t say what B1dose you’ve been taking and whether you have had cause to change this over the 18 months you’ve been trying B1. You have mentioned improvements so obviously the B1 dose was correct at one time. .Have you checked whether the B1 dosage is now too high for you? Most of us have found that we need to decrease our B1 dosage over time. I’ve gone from 100 mg sublingual daily to 3 mg weekly over a seven years period. Increased off time is definitely a sign of B1 overdose. I would suggest that you try that first by taking a 1-2 week break and monitoring symptoms to see if they improve. I’d be inclined to test this theory first before increasing your levodopa meds. I hope I’ve helped!

[Parkie1 in reply to Dap1948]

Yes,thanks Daphne. I'm taking a break this week and will continue it next week., then reduce the dose from 121/2 mg to 6 mg again

[Dap1948 in reply to Parkie1]

Remember, only reduce the dose if your symptoms have improved during the break as that will be a sign that the B1 was causing the worsened symptoms. Good luck.

[Parkie1 in reply to Dap1948]

Thank you, Daphne . I really appreciate all the help

[pearlette]

Chances are more areas of your body and brain are waking up. Hence the energy rise.So during an off phase, more of your body is feeling the drought but it has not switched on enough extra neurons to produce more dopamine (yet ?)

Spelling this out at a biochemical cellular biology level is difficult for me right now but it is probably closely linked to the benefits seen by some pwp with regular exercise.

Interestingly most of those people report losing the effect when they stop the exercise or activity

[Parkie1 in reply to pearlette]

Thank you . I think I understand that. Although I have more energy, the " on times" are not long enough to the amount of exercise I think I should be doing.

[pearlette]

According to the science as i understand it so far it's some times will take a very long time. The levodopa that we take helps restore some muscle functionality but does not do a perfect job. Some of that is because a lot of peripheral nerve dysfunction is poorly understood.

When we are talking of muscles it is not just the voluntary muscles to think off.

Every little organ has involuntary muscles that are controlled by the autonomic nerves as well. So your gut,lungs etc all compete from the same pool.

To substitute enough for a defective quota of the right "juices" is a tall order .

[Parkie1]

That makes sense. I suppose only your brain knows how much dopamine it needs at any time. Can't expect any drug to match that. Thanks