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...
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sunvox
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I'm betting on the B1 because when it works..IT REALLY WORKS ! B1 is also the best for balance...I know Dr C said if we take too little, or too much, we won't feel that great, but if we get it right we should know it because we will feel better. I also think we need to constantly assess our B1 dose.
I have learned not to take it daily, as in my case it defeats the purpose.
Congratulations for figuring out what works for you! I was interested to see you snort mannitol. I've never heard of this vs. putting the powder in a beverage such as coffee, tea or juice. Did you try the liquid route first? Where did you get the idea to snort it? How do you calculate your dose? (My husband has had PD for 15 years and is still working at 82 but he has a very obvious tremor so his PD is not a secret. )
I also eat trehalose in an attempt to get some to my brain. If you click on my avatar or name you will see all my posts in which I have discussed the issue of delivery to the brain. Suffice to say I am a big believer in autophagy which is to say I believe that a toxic protein is responsible for many of the neurological diseases we see today, and science has taught us that if you can clean out those proteins you can reduce the damage they do. The question becomes how to get chemicals into the brain that can help the body remove those toxic proteins before they cause damage. In Parkinson's the protein is alpha-sy and in my disease the protein is ATXN1. Regardless research shows that mannitol and trehalose can help the body clear out those toxic proteins, but inorder to be effective you need to get mannitol or trehalose into the brain. BioBlast injected IV trehalose into patients and got favorable results. People ate mannitol and got favorable results. The nose is a better path to the brain than the gut. Think nicotine and cocaine. So . . . I snort mannitol because I think it gets to my brain. I can tell you I feel a "rush" every time I snort mannitol. I think it works.
Very interesting! Does the Mannitol effect the mucous membranes in your nasal passages? How much do you use? My husband is using 1/2 T. twice a day in herbal tea or grape juice based on his weight.
Yes, when I first sniff mannitol I sometimes get a tiny rush, but within minutes it causes mucous build up, but it is relatively short lived. I only sniff a tiny pinch that amounts to about .1 g per side.
Hi sunvox. I was particularly interested that it first happened after 3 glasses of wine the night before. We all know that excessive drinking affects the brain , well I wonder if people with ataxia are more sensitive it it’s effects? And therefore even a small amount would have an effect. It affects the cerebellum and causes effects which are similar to those of ataxia? And I have just read that alcoholics have 80% less vit b1 . I haven’t done any research but I do wonder if as we can have impaired cerebellums should we avoid all alcohol? As I know that even one glass of wine would exaggerate my symptoms so I personally don’t drink any alcohol at all. I would be interested in your thoughts
Couldn't agree more. I wish I could abstain from alcohol altogether, but so far I find I do not have the will power to give up my occasional glass of wine or beer. Perhaps if the symptom reappears again I will find the fortitude to abstain permanently.
Dr Costantini was researching Thiamine scientifically as a means of assisting PwP and he was giving free attention with great generosity of spirit. Unfortunately he was stricken with severe illness and was unable to continue.
Hi Joe. Thanks again for sharing your much appreciated research. I'm interested to learn and wonder if this is available in the same form in the UK... My mum has SCA2 so I wonder if we should give it a go. Do you suggest a smaller dose as she is quite small?
I suppose I have to better research your whole treatment experience and not just try the thiamine on its own?
Sorry I didn't reply earlier. As always I have to say first consult your mom's doctor, because I am not a doctor or a researcher, but I will say this. Thiamine is known to be very safe even at crazy high doses. One study examined people who ate 8 g a day for a year with no ill effect. So to me for anyone with ataxia, 2 g per day of thiamine hcl is a cheap and safe vitamin worth trying. A small percentage of people do have side effects but they are almost always minor, and yes thiamin is available in the vitamin section of your grocery store or pharmacy. Thiamine hcl is what Dr. Constantini recommends versus thiamine mononitrate. The hcl style of vitamin is water soluble the nitrate style is not.
Side effects of thiamine include:
warmth
skin discoloration
sweating
restlessness
rapid swelling of the skin
itching
hives
fluid in the lungs (pulmonary edema)
weakness
tightness of the throat
nausea
A very small number of people are allergic to thiamine and experience a severe allergic reaction (anaphylaxis)
Hi Shadee - I honestly always had doubts about the efficacy of HDT and thought more likely SOME thiamine was good, but HDT was unnecessary. Now I don't think that Joe
If you click on the link here - healthunlocked.com/parkinso... - I have a thorough discussion of PQQ. I stopped taking it for a while after talking to a doctor who said it couldn't reach the brain, but after further research I disagree and so started taking it again.
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Joe
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