Do you have a relief for your tremors with Thiamin treatment?

[texasL]

Hello. My dad has tremors which are getting worse. He was on Thiamin but gave up after few weeks. Wanted to find out if somebody here got some relief for their tremors. Would like for him to start taking Thiamin again. Thank you so much.

[Hidden]

I choose carbadopa/levadopa plus thiamine hcl.

Looking backward two years, before thiamine hcl and c/l , I have had occasion when tremor was so bad I had my wife take me to the hospital ER. Of course there was no movement specialist present nor doctor with any clue what to do for me.

[texasL in reply to Hidden]

Thank you.

[Rosabellazita in reply to Hidden]

So what did you do

[Hidden in reply to Rosabellazita]

I just had to "suck it up". Get back on the "horse".

[Hidden]

texasL,

Taking thiamine for a few weeks for PD is far too short of a test period to be of any use! It can take up to 6 months just to get the dosage adjusted to optimal, but most are able to find that magic dose within three months and a very select few are able to hit it right on with the very first attempt!

There are over 50 members on this forum currently taking thiamine and of those, 17 have reported varying degrees of tremor improvement as reported in the following thread:

healthunlocked.com/parkinso...

If you are going to make a more serious effort for your dad as far as thiamine goes, it might be helpful for you to read the following post in order to maximize your chances of getting all of the potential benefits that thiamine might be able to offer your dad!

healthunlocked.com/parkinso...

Best of luck going forward and please keep us posted on your dad's progress!

Art

[texasL in reply to Hidden]

Thank you.

[ParlePark]

I’m on thiamin as well. No help with tremors though. but I’m doing pretty good all considering. Dr C says tremors the hardest symptom to relieve and with me obviously so. He recently advised me to take C/L for tremors and will speak with my neuro next week. I agree with you, re staying with thiamin. Can’t hurt, cost is extremely reasonable and he should contact Dr C and provide his requested videos. Over the few years since I’ve been diagnosed I’ve learned not to quickly formulate opinions regarding symptoms. Because at least for me are affected by sleep, mood and a host of other external criteria. However read Art’s thread... there are quite a few who have benefited from thiamin re tremors. Just not me.

[texasL in reply to ParlePark]

Thank you.

[whatadrama in reply to ParlePark]

I see a lot of advice to contact Dr C.. I have written three emails but no response... do you translate into french or are u getting response writing in English.. what is a good free?..if possible app to use...

[Sane1 in reply to whatadrama]

I e-mailed Dr C last week. Included all pertinent information...name,age,ethnicity,weight, date, when diagnosed, all symptoms, meds, supplements,UPDRS score, had not sent videos at that time but described voice,facial, walking and pull back results...etc. I used the suggested translator in Italian. deepl.com/translator .

I received a reply from Dr C within a few hours.

[ParlePark in reply to whatadrama]

See Sane1’s response. Using requested translator and provided necessary info. The Dr. I’m sure is being bombarded with questions from all over the world. He had always gotten back to me. Sometimes in a few days sometimes asap. Send videos.

[ParlePark in reply to whatadrama]

Italian. Read Art’s thread

[Hidden in reply to whatadrama]

whatadrama,

If you do not send the correct and needed information in your email, Dr. Costantini can't give an informed and useful reply without it!

Please read the following post which will explain everything you need to know before you contact Dr. Costantini:

healthunlocked.com/parkinso...

Art

[Hidden in reply to whatadrama]

Do you have any success reaching the neurologist?

[Rosabellazita in reply to ParlePark]

Did you start the CL and if so is it working for tremor

[ParlePark in reply to Rosabellazita]

I have not started C/L yet. Been taking mucuna and that doesn’t seem to help yet. Will be meeting with neuro next week and will consider options at that time. I was on Amantadine for about 45 days. Twice a day. Stopped tremors approx 90% but side effects weren’t worth it. For me that is. Seems quite a few people don’t suffer the side effects I did. Worth a try. Can always stop.

[Rosabellazita in reply to ParlePark]

I take amantadine. No side effects. It does not stop the tremor. My neurologist wants me to take CL but I don't want you to because I'm afraid I will get dykensia.

[ParlePark in reply to Rosabellazita]

I understand your concern. I think it depends on a lot of factors. Age,stage, symptoms, etc. I experienced tremors daily. Also hand coordination as well. However my other symptoms appear quite erratically. I’m considering C/L low dose. Will discuss with my neuro next week. Very happy with him but getting a second opinion from another movement disorder specialist. Dr C has reviewed my videos and recommended this as well. You may wish to consider getting a second opinion as well. I think there are others in HU that are more qualified than me to provide a viable opinion.

[park_bear]

Took about 5 months to improve my tremors. A few weeks too short.

[texasL in reply to park_bear]

Thank you.

[Rosabellazita in reply to park_bear]

How much did you have to take each day to relieve your tremor

[park_bear in reply to Rosabellazita]

I took 2g 2x/day for 4 months then dropped back to 1.5 g AM only.

[Rosabellazita in reply to park_bear]

Are you referring to CL or b1?

[park_bear in reply to Rosabellazita]

B1

[ParlePark]

Nothing has stopped my tremors as of yet. I am tremor predominant for sure. I just started taking mucuna but so far no, maybe a little milder. I’m not sure as everyday so different. Nothing major.

Amantadine did stop my tremors but were accompanied with long headaches so I stopped. Dr C recommends a 1/2 of 100/25 CL. I’ve been in touch with him over 6 months providing updates and videos.

Meeting with neuro next week. Will update Art’s post in 4-6 weeks after

[Rosabellazita in reply to ParlePark]

How many times a day?

[ParlePark in reply to Rosabellazita]

Took Amantadine twice a day. Breakfast and lunch started slow and built up. I went off slowly as well.

[ryanJames1]

Hi

I am tremor dominant and on NAC, Mucuna, mannitol and thiamine

I recently added ginkgo biloba which while not curing has definitely improved tremors when at rest

[Rosabellazita in reply to ryanJames1]

mg of ginko biloba and name brand?

[ryanJames1 in reply to Rosabellazita]

I use I herb leaf extract I started with a half a teaspoon twice a day and after a month I have upped to 1 teaspoon two times a day I have definitely improved tremors but you do need to research the side effects

ncbi.nlm.nih.gov/pmc/articl...

[Hidden in reply to ryanJames1]

ryanJames1,

One thing about Ginkgo Biloba that some people may not be aware of is that it can act as a blood thinner, so caution and your doctor's supervision may be needed if you are also on blood thinners, take aspirin regularly or are already taking vitamin E which can also act as a blood thinner.

Art

[Despe in reply to Hidden]

You're right, Art, but necessary evil. My husband is taking Omega 3, Turmeric, and Vitamin E. He was taking a baby aspirin twice a week, but he stopped the aspirin.

[Hidden in reply to Despe]

Despe,

People often think , well, its just a vitamin, what can go wrong? Not realizing that some supplements can have blood thinning effects when you are already taking a blood thinner or two can be dangerous!

Art

[ryanJames1 in reply to Hidden]

Yes always important to research all side effects of any new supplements I'm not on any other blood thinners so good outweighed bad for me

[SufferingSocks in reply to Hidden]

You are exactly right about some supplements having a blood thinning effect Easilly. My GP questioned me recently about supplements I was taking and informed me that you can overdose as any vitamins or supplements are actually a drug! I discovered it myself when I took something to help me sleep, I woke up feeling drugged. Suffering Socks

[Tricia7912]

Hi my husband had tremors really bad and was put on stalevo which has taken for years now it was quite a low dose to begin with but has increased over the years hope this helps 😊

[Kwinholt]

Unfortunately it made all my symptoms worse. It’s seems to work amazingly for some , it just wasn’t for me. Good luck .