B1 therapy

[gurdeep11]

I am trying everything in my capacity.. I tried B1 pill 100 mg, read the book too. I even emailed Dr. C in 2016.. but it does not seem to be doing much .. my condition is such i cannot experiment too much..i guess i will take out some time from my limited on-time window to write about my symptoms.. so that you guys can guide me better..

I know every PD patient is different but mine seems really weird one..I have extreme unbearable pain and nothing seems to help.. I tried CBD, THC, etc. but they increase my pain

[parkie13]

Look up. PDWarrior1900. His recent post with two YouTube videos. I think you will get your info on B1. Mary

[Juliegrace]

B1 is not the answer for everything. It doesn’t work for everyone. What kind of pain do you have? Is it dystonia? If adequate PD meds don’t help you then you could see a pain specialist. This is assuming you have resolved the issues with your wife and have become your own advocate. I am struggling with bouts of extremely painful dystonia and will try anything that might help, including things that might cause dependency. I frankly don’t care about dependency if it works and as far as I am concerned neither should a good doctor. It should be about improving your quality of life. If you are suffering as much as you have described you should take the benzodiazepines that have been prescribed for your anxiety and see if they help with sleep (which I assume is not good) or anything else. I have tried clonazepam for my dystonia and it didn’t help.I occasionally take Ativan for it, but it really doesn’t help much, but if it did I would be taking it every night.

[park_bear in reply to Juliegrace]

Something to be aware of - dystonia can result from too much levodopa as well as too little. A key indication is whether it is at its best or its worst first thing in the morning when your levodopa levels are at a minimum.

[Juliegrace in reply to park_bear]

It appears to be peak dystonia but it is happening with the smallest dose of c/l.

[park_bear in reply to Juliegrace]

I figured I was the only one who was so levodopa sensitive. If I take a full dose of C/L ER 25/100 my leg on the affected side tends to become stiff and unwalkable. I take a half dose at midday before my hike to avoid this problem. I used to take full doses morning and evening but now take a bit less to avoid dyskinesia.

[LAJ12345 in reply to park_bear]

no, you are far from alone. Why don’t you ask for the 50/12.5 madopar tablet then you can cut it up as small as you like.

(I don’t like the madopar capsules with all their blue colouring either . Not sure what sinemet have in them. Why would you eat fake blue? The white tablets look purer to me. )

[park_bear in reply to LAJ12345]

No madopar in the US but thanks for the thought!

[LAJ12345 in reply to park_bear]

oh, does sinemet come in a smaller tablet?

[park_bear in reply to LAJ12345]

I take a generic C/L ER which does come in a small tablet.

[LAJ12345 in reply to park_bear]

is that an extended release? It was when hubby changed from the IR to the ER madopar he had all the issues. Now he is back on the low dose instant release he is doing great again.

is that ER you take allowed to be cut?

[park_bear in reply to LAJ12345]

Yes and yes. Extended release is what works for me.

[LAJ12345 in reply to park_bear]

interesting. Hubby takes the half dose entacapone with the low dose madopar and I think this has the same slowing effect. I think the problem with the er for him was it only comes in the 100/25 and madopar isn’t allowed to be cut and so he was being overdosed.

[LAJ12345 in reply to Juliegrace]

what dose? Are you on the 100/25? Madopar comes in a 50/12.5 white tablet and that can be cut up as small as you need. I would try that.

Make a table and record your symptoms and dose eg

Time Dose How am I feeling now

9.00am 50/12.5 Shaky, frozen

10.00 am ——- Ok

11am ——- Rigid, pain

Etc.

That makes it much easier to see what is happening if you do this every hour for a few days. Try a smaller dose a little closer together. Try more and closer together in the morning then less and further apart in the late afternoon / evening.

If that is t helping also try taking entacapone 1/2 a tablet with each dose.

Try a low dose of clonazapam 0.5mg. 1 tablet cut into quarters and spread over the day.

These things seemed to help hubby.

[Juliegrace in reply to LAJ12345]

We don’t have madopar in the US, but I have done that several times, cutting up my 10/100 c/l into quarters. The problem is if the dose doesn’t result in dystonia it’s too small to be effective and I end up crashing through a vicious off period, without having any on time. I feel like my meds are trying to kill me. I saw my neurologist two weeks ago and he’s clueless. I’m seeing my PCP this morning but I don’t think he can help. I’m feeling pretty despondent at the moment.

[LAJ12345 in reply to Juliegrace]

have you tried taking a mucuna capsule with it. The mucuna peak is offset slightly with the levodopa peak so it gives a longer time that the peak is in the zone. Hubby takes one NOW mucuna with his, and the half entacapone which I think will help the mucuna be utilised more efficiently.

He was feeling despondent, actually completely miserable too, then it came right and he has been feeling good ever since it was stabilised. So don’t give up, you just haven’t got the right timing and dose yet.

[Juliegrace in reply to LAJ12345]

I have tried mucuna, every way, combination and strength available with no success. But I saw my new PCP today and he is trying very hard to help me.

[LAJ12345 in reply to Juliegrace]

did you try decreasing the levodopa and substituting with the mucuna rather than adding it? I think the entacapone helps too but never know what it was that made the difference.

[Juliegrace in reply to LAJ12345]

Yes, I have tried decreasing, increasing, substituting, you name it I have tried It. I couldn’t take entacapone because the pills were huge and I asked the pharmacist about cutting them but he said not to. Not that that would stop me, but the size of them cut scared me even more than whole. I actually have a prescription for ongentys, but haven’t taken it because of all the other issues I wasn’t ready to add it to the mix.up

I truly appreciate your thoughtfulness and willingness to share and help.

[LAJ12345 in reply to Juliegrace]

I didn’t ask, just cut. 😀oops. Seems to be fine but a bit scratchy on the edge.

What mucuna did you use? A standardised one or pure bean powder?

[Juliegrace in reply to LAJ12345]

I have the Now dopa mucuna have tried Barlowe’s, a 20% l-dopa organic one and the Nutrivita 100%.

[LAJ12345 in reply to Juliegrace]

ok, sounds like you’ve tried everything.

[LAJ12345 in reply to Juliegrace]

do you take a multinutrient with a high dose of vitamins in their natural form? And have they tested your bloods for any deficiencies?

[Juliegrace in reply to LAJ12345]

No to the multi nutrient and yes, I’ve tested for Vitamin d, b12 and b6. Did hair testing a while ago with my previous naturopath. I suffer from supplement fatigue and wonder how your husband manages to take all of his.

[LAJ12345 in reply to Juliegrace]

yes, it’s a lot but he has gone through a few times when he tried to stop for a while and felt worse so we carry on. He takes them a handful at a time washed down with b2 dissolved in water! He is now taking the weekends off the supplements and that seems ok. He is only on a small amount of medication so I guess he doesn’t have many of those pills to swallow,

When I think how he was before diagnosis he was always fatigued, anxious and depressed and now his mood is good and stable and his face beams with smiles and he finds jokes in anything and he has energy to walk for hours and he socialises at bridge. Before he just slept all day. His parky smell has gone, and his sense of smell has improved. I think if your mental health is good the other symptoms are easier to handle. We just treat the supplements as part of his meal as most of the things are vitamins and omega3 oils. So he has a bite of his dinner, takes the handful of capsules then a swig of b2 juice and finishes his meal.

Current unresolved issues are hands that don’t work well, need to pee, and erectile function, tremor when excited or anxious. Most other symptoms are not too bad.

[TL500 in reply to Juliegrace]

What is supplement fatigue?

[Juliegrace in reply to TL500]

When it’s just too much to swallow all the supplements.

[park_bear]

If your pain is from dystonia an increase in your levodopa intake may be in order. Do you get relief after taking a dose?

[Windermere1]

when you tried b1 therapy did you take 100mg sublingual (under the tongue) OR 100mg HCL Oral.

If sublingual dose should be 100mg Mon We’d Fri

If HCL Oral start dose should be 500mg daily.

Please try again and hopefully will help.

[ForViolet in reply to Windermere1]

I agree and I don't understand the idea that trying 100mg would be a good test. Maybe under certain circumstances of possible extreme sensitivity.

In that were the concern, I'd go the route of a very pure (without excipients) thiamine like Dr Clark's. Then, I'd advise starting with the basic 500mg for 2 weeks. Etc.

[Civic407]

I have found that massage therapy can help a lot on the days that I am having a lot of pain. May be worth a shot and you will know in an hour of starting if it is helpful for you.

[PDWarrior1900]

hi -- i posted within the last few days a 3 1/2 hour video for B1 instruction ... look for that and STAY STRONG!