I have been trying for years to find success with HDT but haven't. Currently I'm on levodopa and entacapone, taking meds at several intervals /day. As meds wear off before it is time for the next dose, I'm experiencing EXTREME fatigue. It's nearly impossible to stand or move. The fatigue comes on rapidly.
I have been doing HDT with oral thiamine HCL, 500mg per capsule. I am up to 1 g /day and trying to figure out if the fatigue is a consequence of the disease progression or perhaps the thiamine.
Trying to figure out thiamine is like trying to make sense of tea leaves or entrails. Can thiamine cause fatigue? Daphne said in her No Silver Bullet video that there is potential for improving fatigue with HDT. I don't know whether to go full speed ahead with thiamine or hit the brakes.
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Zardoz
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I’m on levodopa and Entacapone also but with nothing else. I have the same problem but some days the tiredness doesn’t come on and I transition smoothly. Other days it drops me in my tracks. Exhaustion and complete weakness like I’ve never experienced. I try to nap otherwise I’m on the mend in about an hour. So maybe you can rule out the thiamine. Levodopa will do it on it’s own. I do believe the Entacapone extends the c/l, but that can exasperate the fatigue also.
I experience a “down “ period after L/C wears off. It feels like swimming upstream in cold molasses and I can do little but nap until it passes. It is the L/C not the B1 that causes it. Once the down time passes, I can function better without taking another dose of L/C. You may be over medicated as B1 can reduce the need for as much medication. A high functioning period will be followed by a low one with the meds.
Finding the right dose can be tricky and we have all at one time or another asked ‘am I taking too much or too little?’! If you think too much B1 might be causing the fatigue then simply stopping B1 for 1-2 weeks and monitoring symptoms should answer the question. If unwanted symptoms reduce then your dose was too high. However fatigue is a very common symptom of Parkinson’s and is often one of the first that B1 at the right dose alleviates, so your dose could be too small. Your B1 hcl dosage is not a high dose and people, particularly if their gastrointestinal system is not in top working order, find they need to go a bit higher. You don’t mention any other worsening symptoms, which you would almost definitely see if the dose was too high, so I think I would assume your dose is still too low to have an effect and try 1,500mg and monitor what happens. Watch out for worse sleep, increased stiffness, feeling edgy etc as signs the dose is too high.
You might consider joining my Facebook page, where these sort of questions come up all the time!
Hi! Try to eat cereals (maybe gluten free), vegetables and fruits, white meats like chicken, eggs. Try also keratin. Maybe something in your diet can cause weakness.
The B1 Facebook group is really helpful. My husband has just started on B1 about a month ago. Oral first but over dosed on 500mg a day after 9 days. Came off for 10 days and started on sublingual. Half a tablet a day was working immediately but after a couple of weeks overdosed again. Started again on Monday taking half a tablet sublingual alternate days because he truly believes the B1 works. He is being patient to find the correct dose. His sleep has definitely improved even on the breaks from Thiamine and we are wondering if the magnesium is helping. I hope you are taking that with the B1 and B complex.
Yes, your dose is probably far too low. See Dap1948’s reply to you and perhaps join her Facebook site. I’ve ordered her book. We are up to 1500mg daily and are increasing it by 250 mg today to 1750 mg.
I feel your fatigue, & exhaustion. I'm taking the same two drugs that you are taking every 3 hours and some days I don't do much of anything and the instant fatigue just stops me in my tracks, I take a 1 hour nap and can generally function again. I've never found the sweet spot with B1, but I'm going to try again starting tomorrow.
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