Hi all,
A full detailed report will be posted if and when I achieve a month of improvement.
I've finally stabilized with sinemet cr 5x 200 and 10mg requip xl after 2 yr of drug adjustments and changes. I'm 10 yr post dx and would describe my symptoms as severe and poorly controlled.
I'm rigidity dominant and my main symptoms are pain, anxiety, rigidity, stooped posture and bradykinesia plus the usual suspects, insomnia, constipation etc, etc
The above has left me virtually housebound.
Male: 55y 6ft 101kg
B1 HDT TRIAL ------- solgar B1 hcl 100mg & 500mg
100 mg – 2 weeks = no improvement
500 mg - 3 weeks = no improvement
1 gm - 2 weeks = no improvement
1'5 gm – 1 week = mood/mental health transformed
At 1'5 gm there was a dramatic reduction in anxiety & elevation in mood, noticeable to others. Some easing of rigidity, drinking without a straw for example, but minor and brief. At this point I should've run with 1'5 gm for at least a month. But I wanted to know the upper limit, the 'overdose figure' thus narrowing down my likely therapeutic zone .
2 GM – Day 1 = no change
Day 2 = no change
Day 3 = suddenly for 1 hr 70% improvement in symptoms. This is largely a subjective guestimation, but based on the fact I felt amazing! For example, at my worst I sometimes need to be 'pulled' up from an easy chair. For that hour, I swear I could 'spring' yes spring from a seated position to standing without even using my own hands for assistance! + visited friends.
Day 4 = sadly a gradual worsening from 7.00 pm
Day 5 = worse still and inline with the protocol decided to cease B1 for 5 days
Day 6 = first day without 2 gm or any B1. Started poorly but by 11.00 am after my 2nd sinemet cr felt really good for the rest of the day? My theory is that I hadn't built up that much B1 in such a short time and therefore it faded quite quickly and that by mid-morning I was passing through the sweet spot of B1 levels for me.
Day 7 = Bad all day. But was fascinated by the experience so far. So in the interests of science started on B1 2 gm. Again I was feeling great! Notice how the effect is now immediate whereas it took 3 days before, clearly residual B1 was still effective.
Day 8 = This is where it gets very interesting. Took 1gm early a.m as before, for 1 hr felt good. But ! At 9.30 I suddenly felt dizzy, weak, rapid pulse, shaking (not like dyskinesia). I felt dreadful all day. I still took my 2nd 2 gm B1 dose at 12 pm. I was by now fully PD'd up and in a mess. But I was starting to wonder.
The experience felt to me, and believe me I've been through it many times, like
withdrawals! I've some low dose madopars to play with and wondered if they would make things worse or better. If the B1, when too much, is increasing the dopamine or drugs in my brain then a 'hit' of l.dopa should make me feel worse. If too much B1 in some way inhibits or drops the same then it should improve things. It improved the situation, and as the B1 waned over time my regular meds increasingly made me feel better. By day 9 I was back to norm.
Day 9 was yesterday, I stopped B1 and my day was a very similar repeat of day 6. Rough start until the afternoon and then a really good day, possibly as the B1waned again briefly passing the sweet spot (1750 mg?)
Day 10, today 17/03/19 Very PD, but easing as day goes on and meds build up.
It's worth noting that I am very sensitve to psycho-active drugs. I've never been able to tolerate ssri's, ropinirole was a 'shit' from day one and still is. Every titration, reduction causes me weeks and weeks of grief. They say 3 months to fully accept a new dosage. It was 12 mnths before 16 mg of ropinirole but me in hospital. My point is the above is 'my' experience and may well not be like anyone else's.
Below are some personal notes and observations. I seek neither to preach or teach, my only aim in posting is for a better understanding and if it helps someone, that would make me very happy.
I now have a supply of 500, 100, and 250 mg B1 hcl and am starting a months trial a 1500 mg with the ability to increase by smaller amounts.
B1 most definitely has symptom relieving properties.
The dose is critical and rather than some folk not responding it may be they're more sensitive and therefore will respond to a more precise dose ie 1200, 1750 etc
As it has helped those not yet on conventional treatment it would appear to act directly on the brain. However, my experience is that it definitely also affects DA's and L.Dopa. I experience the same temporary bio-markers with B1 as with normal meds. Slight temporary 'start of dose' dyskinesia, increase in urinary frequency, increase in libido as examples.
I normally have considerable fluctuations, and always have had, in my symptoms. It is very easy to blame B1 when it could just be coincidence you're going through a rough patch.
It acts as a diuretic in me. And dehydration is a constant problem. Not dehydrated in a clinical 'put him on a drip' sense but in a parky sense. Low hydration = drugs not as effective = constipation = drugs not a effective = drop in dopamine and trouble.
Please feel free to use or ignore as you see fit.
B1 trial
B1 experience so far!
Vitamin B1 dose for an early PD patient?
B1 Question ( nothing comes easy )
