Beating back my first bad symptom. Thiamin(e)?

[sunvox]

For those who do not know me I am a regular poster here on HU, but I have SCA1 and not Parkinson's. SCA1 is similar to Parkinson's and the symptoms are almost identical, but SCA1 is caused by one known mutation in the DNA whereas Parkinson's seems to have many possible causes. However, I have been drawn to the posts on the Parkinson's forum because one current theory on what is common amongst all Parkinson's patients is a mutant protein (alpha-synuclein) that hangs out in the brain and causes damage. In my disease it is ATXN1 that hangs out in the brain and causes the symptoms. Anyways enough background and onto the point of this post . . . .

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I was asked to share this post on the Parkinson's forum so here it goes

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So, last August I was at work on a layover in Hartford, CT and went down to the fitness center in the hotel and hopped on the treadmill for my regular 30 minute run. Most of the hotels at which we stay for work have the LifeStyle brand of treadmill. These are narrower and slightly more bouncy than the treadmill I have at home. Anyways, I found that morning that I had to grab the handrail suddenly as my right hip became immensely stiff and I couldn't seem to get it to take a normal stride. I absolutely panicked. Luckily there was no one else in the gym to witness my strange behavior. I slowed the pace down, raised my legs higher in my stride, and I was able to continue albeit feeling slightly unbalanced the whole time. When I got home my run on my home treadmill was normal and I just decided that I had tried to run early in the morning whilst I normally run in the afternoon, and I probably shouldn't have had the 3rd glass of wine the night before. In any case time passed, and I didn't think anything more of it. Then two months ago it happened again. I powered through as there was another person in the gym, but it was agonizing with my right hip just incredibly tight. I had to slow the pace and really focus on lifting my right leg high on each step making a more rounded stride versus a shuffle stride. This time when I got home I had the same feeling on my home treadmill. Even worse I woke early one morning for work and all that day I found myself just ever so slightly off balance while walking normally which has never happened to me before. Plus I suddenly found myself needing a 1 hour nap every afternoon. I then decided no more treadmills at work because I didn't want anyone to see, but what to do? I can't have symptoms start now because I have 2 kids in college, and at the moment my wife is unemployed. I need at least 5 more years of work, and if I can't walk straight that will be a big problem. So now I'll "cut to the chase". The symptom is gone and I feel great. Do the symptoms come and go on there own? Is it psychosomatic? I don't know, but my gut tells me one of the changes I made helped ALOT. Here is what I did. First, I started walking longer and faster everyday. Second, I started taking Ubiquinol and PQQ. I felt slightly better. Third, I started snorting mannitol everyday instead of once per week. I felt a little better. Then a month later I realized that the symptoms started when I cut back my thiamine intake from 1 g to 500 mg per day so I re-upped my thiamine to 2 g per day. Overnight I felt better. I didn't need a nap, and my treadmill running felt normal, and that has lasted now for about 2 weeks so far. How long until I feel unbalanced and tired again? Who knows. I just wanted to share my story and put one more bit of anecdotal evidence out there for high dose thiamine. I'm not sure if it's just the thiamine or the combination of Ubiquinol, PQQ, snorting mannitol, AND thiamine. All I know is I feel 100% better.

Joe in NY

P.S. For those that don't know the whole story there is tons of discussion in the Parkinson's forum on high dose thiamine as a treatment for Parkinson's. It all comes from an Italian Dr. who claims to help many different illnesses with high dose thiamine including one report on SCA2. Unfortunately he has not been able to attract serious interest from researchers so the information to date is either from him or anecdotal like mine, and nothing scientific: ncbi.nlm.nih.gov/pmc/articl...

P.P.S I have recently learned that Dr C. has been very sick/injured and wish him all the best and a speedy recovery!

[ion_ion]

I solved all non-motors symptoms and improved the motors ones with HDT only.

[Bcarroll in reply to ion_ion]

What dose? Pills or shots? Any distonia or leg pain?

[ion_ion in reply to Bcarroll]

500 mg pills, adjusting according to the symptoms between 1-2g/day.

No dystonia or leg pain, at contrary, I feel a release.

[Grumpy77 in reply to ion_ion]

Do your motor symptoms include tremor?

[ion_ion in reply to Grumpy77]

RH tremor is my single motor symptom. Thiamine helped it but maybe 50%. Sinemet did not helped so I cut it down to 2x100/25 per day. Amantadine did not help tremor not at all so I stopped it.

[jimcaster]

Thanks for sharing this, Joe. Very encouraging!

[Bcarroll]

Can you tell more about snorting mannitol?

[sunvox in reply to Bcarroll]

I had to stop as of yesterday because my doctor found it was causing damage to my nasal cavity so I will be returning to using an over the counter product known as Xlear. The nose is an excellent route for delivering molecules to the brain though evidence that mannitol actually makes it to the human brain through the nose is essentially non-existant. (There was one study in rats that hints it might be possible.) Trehalose, mannitol, and xylitol are all molecules that have some evidence showing that they can cross the BBB and help clean out toxic proteins from the brain. Granted eating and sniffing them could only possibly get a teeny tiny amount to the brain, but it is my hope and belief that even a "teeny tiny" amount can be beneficial in slowing the progression of diseases like PD and SCA1 since it takes decades for the damage that is caused by alph-sy and in my case ATAXIN-1 to manifest.

[ConnieD in reply to sunvox]

Hi Joe Xlear nasal spray? How often? I stopped mannitol due to stomach upset but would like to use another option. Will you take mannitol orally again? thanks for any advice. Connie

[zaq11qaz]

Thanks for the post. At what point in time did you change your mind about HDT and Dr. C? I seem to recall that at one time you were skeptical to say the least. Unless I'm mistaking you for someone else.

[sunvox in reply to zaq11qaz]

Hi Zaq-

Count me still as skeptical in that I do not believe HDT is or can be effective over a multi-year period if taken alone. I believe HDT should be part of a total regimen that includes diet, exercise, good mental health habits including possibly yoga or meditation, supplements, and standard medications. I was taking 1 g per day of thiamine for almost 2 years until I recently cut back so I always did and still DO believe it has a role to play, but my most recent experience leads me to suspect that it is in fact high dosages that hold potential to be helpful versus lower dosages more often prescribed in general health discussions or found in multi-vitamins. Joe

[Despe]

Hi Joe! Visit next door post on NR. My husband is using Thealoz ophthalmologic drops in the morning and evening, YOUR DISCOVERY! He also takes oral Mannitol, 3 tsps., with his breakfast and tea, and B1 IM injections , although we have used different doses to find the right one--now 50mg X 2 week.

[st8farm]

1. Th e photo is of Thiamine in tablet form and not HCL (water soluble).

Dr. Constantini is VERY specific that you stay away from non-soluble B1.

2. Capsules are much more user friendly and slide down with water no problem.

3. Dr. always stipulated that you follow the course of treatment your Dr. prescribes and

B1 is ancillary and supplements the normal treatment to good effect. It also precludes the progression of the disease in most cases.

4. My trial and error has shown me that my level of dosage is 3-4 grams per day to good effect.

Larry

[Juliegrace in reply to st8farm]

Solgar tablets are HCl. It's on the back label.

[sunvox in reply to Juliegrace]

Thanks Julie You beat me to it.

[TL500]

Hi sunvox How much of Ubiquinol, PQQ, mannitol are you taking?

and do you take B complex to go with b1 as well? Thanks