Back to high dose thiamine

[mariecoppola]

Happy New Year all. My husband John was diagnosed with cervical dystonia and PD ten years ago. He started high dose thiamine last November with the aide of Dr Constantini until the end of January when he no longer could speak with patients. We both saw improvements. We continued this protocol until mid July. He was getting extreme heartburn and wanted to stop the thiamine. He started to decline quickly after that and has been declining ever since. While on the thiamine he had no freezing and no falls. He still had insomnia and constipation, but he was so much better than he is today. My daughter suggested that we begin thiamine again. We began today. Has anyone done this and if so, how long before you saw improvement? Thank you.

[pvw2]

Does John have Parkinson's (PD)? Did the doctor mention was caused John's cervical dystonia? Is it related to PD medications?

[mariecoppola in reply to pvw2]

He had a fall ten years ago and within a week his dystonia started. His neck went back and he couldn't bring it forward. Shortly after that his tremors began. We've been to 17 doctors over the years and about five years ago began working with the head of movement disorders in NYC where he finally got some relief. Four bouts with Botox injections and it did nothing. He had a spinal fusion of two discs which gave him some relief but has had more PD symptoms over the years. it's been a long journey for him. We just started with a new neurologist last month who believes he may have x- related dystonia with parkinsonism which is genetic. He doesn't respond to carpidopa/levedopa...it makes his dystonia surface again.

We are in the process of genetic testing.. waiting for results.

[pvw2 in reply to mariecoppola]

A head injury, American football and boxing for example, can cause PD. Maybe John didn't injure his head during the fall. Anyway this should give others more information to see if they have experience related to this issue.

[mariecoppola in reply to pvw2]

Yes. That would be helpful. His case is very different than most,very frustrating for him.

[chartist]

mariecoppola,

The time range that people on this forum have found with HDT/B-1 varies from as quick as the first day of dosing to as long as 7 months until the first benefit is seen.

Since your husband has already found that he is a responder to HDT, it seems fairly likely that it will take a similar amount of time as when he first tested HDT. How long did it take him the first time he tested HDT to see benefit?

Regarding the heart burn issue, it is often caused by too much stomach acid or too little acid and your doctor should be able to determine which is the problem. I can't remember anyone else reporting heart burn as a side effect of HDT. You didn't mention what B-1 dose your husband is using and what he weighs?

Art

[mariecoppola in reply to chartist]

He responded within the first two weeks last year. He weighs 220 pounds and was/is taking 2g a day after breakfast.

[chartist in reply to mariecoppola]

mariecoppola,

Too much C/L can increase dystonia as reported by members on this forum. The addition of B-1 to CL or other levodopa products can have synergy and some members have reported being able to lower their C/L dose with the addition of B-1 so that is something to consider.

Dr. Costantini previously said that the right dose of B-1 should not cause a worsening of PD symptoms and the right dose of B-1 should result in symptom improvement.

How long after starting B-1 did the heartburn start? Is the heartburn possibly associated with something else he is taking?

Art

[mariecoppola in reply to chartist]

The heartburn started about three months into the program. Probably around the time Dr Constantini got sick. I sent him John 's video and he said he saw much improvement and to continue with the 2 g per day. We were on our own at that point. John does not take CL. He takes artane for the PD symptoms. I believe that the heartburn comes from his "addiction" to sweets and not drinking enough water because he had some urgency issues. We saw a urologist for that and all his tests were clear. They put him on a med for that which made his constipation and insomnia much worse. The new Dr put him on melatonin and tart cherry juice to help him sleep. Right now he is getting about three to four hours of uninterrupted sleep, which is amazing for him. I started giving him magnesium for about a week, and I think it's helping the insomnia as well.

[chartist in reply to mariecoppola]

mariecoppola,

The only way that melatonin seems to help me sleep effectively is when I use what I call melatonin 123. If I want to go to bed at eleven pm, I take 1/3rd dose of melatonin at 9:00 pm, one third dose at 10:00pm and 1/3rd dose at 11:00pm. This works very well to help me sleep. I am usually yawning by 10:45 pm. If I take it all at once, it doesn't work nearly as well as melatonin 123.

Art

[mariecoppola in reply to chartist]

I will definitely have him try that. Thanks for the tip!

[chartist in reply to mariecoppola]

Please let us know if it helps him to get better sleep as others may benefit. A few members have reported that it has helped them more than taking one single dose of melatonin. Some people can not tolerate melatonin, so your husband is fortunate in that respect.

Art

[mariecoppola in reply to chartist]

I will. Thank you.

[Jbhd01 in reply to chartist]

Good morning,

You folks seem very knowledgeable, perhaps I can ask a question? I've been trying HDT for a few months now and noticed something that I've not been able to find any answers for.

I began at a dose of 2 grams a day but have gradually worked back to 40 mg a day.

My question is that while I'm on the b1 I seem to have symptoms of b1 deficiency but I feel badly when I stop as well. I'm trying to make sense of this because I keep going lower in the dose and am running out of room to go much lower.

I am grateful for any ideas that anyone could offer, thank you.

John

[chartist in reply to Jbhd01]

John,

You don't really give enough information for the forum members to be able to give a reasonable answer. Thiamine deficiency is a broad subject all by itself and can be caused by various reasons such as high alcohol consumption, gastric bypass surgery, diabetes, dialysis, high usage of diuretics or diarrhea to name only a few causes. Some common symptoms of thiamine deficiency are :

1. Fatigue

2. Tingling in arms or legs

3. Blurry vision

4. Shortness of breath

5. Irritability

6. Fatigue

7. Reduced heart rate

8. Muscle weakness

It should be noted that thiamine deficiency is not very common in most parts of the world.

You don't say what if any benefit you feel you have gotten from B-1 at the various doses you have used. You don't say what your symptoms are. You don't say if your feeling of thiamine deficiency was already existing prior to starting on HDT. You don't say what exact dosages you have used and for how long at each dose. You don't say why you continued to decrease your B-1 dose.

As you can see, you would need to give more information before the forum members could make any suggestions. Here is a link to a page that will answer most questions regarding HDT/Thiamine/Vitamin B-1 :

healthunlocked.com/parkinso...

Art

[1LittleWillow]

Taking 1000 mg vitamin C and 200-300 mg. of magnesium at bedtime helped resolve my constipation. Low doses of THC (just 5-10 mg) in an edible at bedtime brings deep, restful sleep without side effects. If it's legal where you live, it's worth trying.

[mariecoppola in reply to 1LittleWillow]

In NJ it is legal. He has a card to purchase cannibus. So far it hasn't helped much.

[mariecoppola in reply to 1LittleWillow]

Maybe we should try an edible though.

[Donzim]

We used oral oil of lavender (Integrative Therapeutics) and valerian and melatonin for my husband who had both positional and neurological sleep apnea. Everyone needs testing for apnea... it should be tested for with ALL degenerative diseases. Easy test at home using a chest seal and finger monitor...the next day your dr can read the results and know your status. The c-pap machine helped loads.

[mariecoppola in reply to Donzim]

John has REM sleep disorder.