I have been taking high dose Thiamine for a few years, now. I started with capsules, usually 4000mg per day. Then I switched to sublingual. First thing I noticed was my hypertension completely resolved and I was able to successfully eliminate the two blood pressure meds I was on. So thats great! However, when I take sublingual B1, I get really really shaky and jittery for the next two days. I started off with 100mg Sublingual Thiamine HCl twice per week, cut it down to 50mg twice per week, but I was still having trouble tolerating it. I took a few weeks off and started up again the other day with just 50mg, but felt very shaky and jittery until today. Its almost like a nervous feeling, sort of anxious, physically but not mentally. Fight or flight feeling. I take the B1 in the morning. I also take a good Magnesium supplement, but usually take that at night. I took it much earlier in the day yesterday to see if it would improve my symptoms, and it sort of did, but then I got sleepy and fell asleep on the couch for a little while. Later that evening I was jittery again anyway.
Would love to get some input if anybody has any. The benefits of Thiamine therapy are numerous, especially the halting of progression of Parkinsons and the improvements in fatigue and stamina. I guess I can try a 1/4 of a pill, that would be 25mg. Wondering if I stick with it, eventually it will get better. I know we're all different, but has anybody had similar issues?
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bassofspades
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Maybe now you are topped up to the max you could switch back to the original capsules as they seem to wash out quicker? Can you try juggling between the 2, using the sublingual occasionally if original symptoms seem to be returning to top up again? Hubby has been really well for months but has taken a recent dive again with jittery symptoms so you made me wonder if I should lower his dose. He only takes the capsules, 750mg per day. Any more make him worse.
Interesting. He has been on the same amount for ages. I’ll try cutting it out a few days and see what happens. Although his is possibly just anxiety. We’ve had a serious of issues lately. Just found a bathroom shower leak in wall meaning bathroom and bedroom next door need ripping apart. Only 6 years old😞. Stressful elections and of course anxiety provoking World Cup rugby 😅
Ok, thanks, I will give it a go. Not sure whether to do it without telling him to avoid placebo effect or let him know and hope the placebo effect helps.
Jittery, anxious and shakey is how I get 100 % of the time when I take too high a dose of the Thiamine HCL tablet. I'd guess too, that you have maxed out. Try stopping the sublingual for a day, or more, and pay careful attention to how your body feels.
I have not changed my levadopa dose. Funny, this didn't happen with capsules. Maybe since sublingual is better and faster at absorbtion than capsules I should cut down to 25mg
IMHO the symptoms described seem like a strong and accentuated off med. In my experience I solved it with additional prolonged release LDopa.( Madopar)
Something also might change in the gut biome with the b1 sub, that is thiamine mononitrate.
Hi Bass, in my experience it is almost impossible to find a sweet spot for sublingual B1. It took me few months of trial before switching back to capsules again.
I am experiencing identical result . This is the second round of trying to take B1. It is such a small amount 100 mg of sublingual (same source and type as Dapney takes) . Weird feeling of internal shaking, shaky and jittery and I do not feel strong and my arms and legs ache my balance is terrible very, very much so that I am using a cane in the house and I might bring in my wheeled walker. This all happened within a couple hours of taking one crummy little pill.
I had intended to take one 100 mg B1 sublingual a day and in a couple weeks if that was working then start again the multivitamin and if everything went well, consider a Vitamin B complex. I can not get past one B1 . Now I guess that I will take no Vitamin B for two days again and then try my old multy vitamin again that has only 2.25 mg of B1.
I have not expieriancd this before except with the B1 and I do not like it . It looks like the second try is going to end like the first. Such an extreme out of no where reaction to one tiny little sub lingual pill that children could take and it lasts 3 days. I am talking to myself trying to calm myself it is like an anxiety attack , I think but I have never had one before B1.
I came here to start a post to describe this but Base' s post was here so I thought I would just confirm. same situation less typing . i am wiped out and heading for bed
I started using sublingual B1 in early 2022 and assumed it helped. According to Daphne O'Brien who advocates it's usage but also recommends one takes regular break from it, it delays the progress of Parkinson's so I assumed it did. I must confess I had forgotten about taking a break for several months and during the last six months I have had what I described as fizzy feelings mainly in my lower legs but more recently into my whole body. and thereby having a generalised feeling of inadequacy (difficult to describe). During the last week I have stopped the B1 and I am slowly experiencing milder jittery feelings. It was a relief to read bassofspades experience because no one who has not had it can understand -even when I liken it to having champagne in my legs!
Hi Bass, as you know I have been using standard HDT for years with a slight, in my opinion, progression in the last few years with high ldopa doses from the beginning by Dr C. As I have heard attributing for better or worse the most disparate things to I don't contribute much to the discussion about the use of b1 in PD so as not to make things worse.
I'll tell you the essential things I've learned over the years of b1.
1.Standard HDT by Dr C is by means of intramuscular injections, all other routes, such as pills, are a second choice fallback, but they do their job.
B1 injections require a doctor's prescription and little supervison.
2. Levodopa is synergistic with b1 and when you use b1, it could have interactions with other drugs (like all things). If you are more alert and active physically and mentally you consume more levodopa, then this balance could be altered by the use of b1.
3. Syntoms of overdose are simple for me, tachycardia, restlessness and insomnia. I suspended the b1 for a few days and everything returned to normal in a short time.
4) if someone, PwPs or Caregiver thinks of beating the PD with a little pill or a hobbyist approach in his spare time, he hasn't understood which "tiger in the room " he is sleeping with.
I am not a doctor, I am writing this for information purposes and it is only personal experience and does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Bass I am going to print this post on paper and take it to my family doctor and ask if I can get a intramuscular shot and some follow up shots maybe once a week . Gio is right , but then he usually is.
Gio is the OG when it comes to B1 (original gangasta) ! Injections are the way to go if you don't mind the inconvenience. I'm thinking about going back to capsules but I'm going to start low and keep my eyes on my pressure. My last dose of sublingual was Monday and today is Thursday and I finally feel human again! Actually I feel really good today, no tremors at all, no jitters or anything.
I can not believe that I did not moniter my blood pressure through out this exercise. I have a blood pressure measuring device , but I do not even know what is normal for me. DUH
I should not be allowed to use sharp tools some days . I think I will stop writing and just read and listen for a while before somebody actually takes some of my advice . 🎃
I have mild PD - just the shakes in one hand and some balance problems, I use B1 sublingual every other day and that suits me well. I feel more together and so far no side effects. I get mi tablets from the source recommended by Daphne Bryan. (don't forget different tablet coatings, on the same basic drug, can affect different people differently)
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