Mannitol and B1: What’s going on?

[LeharLover62]

Last September, my hwp for 16 years, started mannitol. Over the next months, this gradually allowed him to reduce his dopamine meds, first eliminating the Neupro patch, then gradually eliminating Rytary. He has cognitive impairment and too much of those 2 meds would cause hallucinations. But dialing the dose in let him move pretty well. He was able to get pretty much equal motor improvement with mannitol (confirmed by his MDS). He also got much improved sleep at night, energy during the day, repaired eyelid function, and occasional sense of smell from mannitol.

Then in February, he started sleeping a lot, and having orthostatic hypotension, and his speech declined substantially, so we added back High dose thiamine (which he had stopped last fall when he started mannitol). 1 gram immediately caused hallucinations, so I reduced it to 500 mg every 3 days or so and that gave him his energy back and seemed to improve the fainting.

Fast forward to June, and now he can’t handle hardly any mannitol or B1 without hallucinating. I mean like 1/4 tsp a week! It’s been 2 weeks since he’s had any of either. But the fascinating thing is he’s still moving. We just moved from CA to TX and the first week (due to stress) he had hallucinations and huge amounts of energy for the entire week and took no B1 or mannitol or L Dopa (hasn’t had since Jan) Last week, he slept a lot all week , recovering, but again I gave him none of the meds that impact his dopamine (B1 and mannitol) and he’s still moving pretty well. If he would’ve stopped his meds a year ago, he wouldn’t have been able to move at all.

So I don’t know, we’re starting with a whole fresh slate of doctors now and will get their advice, but any thoughts? Did the mannitol repair his dopamine levels somehow but too much??! Or, his new internist thought maybe the antidepressant is causing trouble now that he’s not taking ldopa? Other thoughts?

Here’s what he’s taking daily:

Effexor

Numenda

5mg melatonin

Vitamin D

Coq10

Cranberry (for UTIs)

Biofilm defense (for UTIs)

4 probiotics (b. Subtalis, l. Reuteri, l. Casei, l. Rhamnosus gg) (for UTIs and PD)

Every few days as tolerated:

Mannitol

Thiamine

Magnesium l Theonate

B12

[Hidden]

Ubiquinol is more effective than Coq10 Turmeric is very easily tolerated and is helpful

(My Dad with PDD has improved with turmeric.).

And you should consider Citicoline.

I appreciate your sharing your list.

There are a few I need to look up for myself

[LeharLover62 in reply to Hidden]

Thanks! We’ve tried both turmeric and citicholine but they trigger hallucinations…I’m assuming they must raise dopamine levels also.

[Kia17]

My understanding is that your husband cannot break down the dopamine which might be because of genetics.

Normally people with this problem cannot handle green tea and when they drink green tea they become restless.

Does he take enough leafy green vegetables or any B vitamins?

[LeharLover62 in reply to Kia17]

He’s not much of a greens eater. For the B vitamins, Only high dose thiamine and occasional Sublingual B12. I think he does have trouble with matcha come to think of it. Is there a good test or thing to try?

[Kia17]

In my experience, like I said he probably isnot able to properly break down the dopamine and his brain gets flooded by the dopamine and that’s the reason for his hallucinations. That unbroken dopamine can also turns to dopamine quinone which is highly detrimental to a PD brain.

I would take some methylated B vitamins that has enough B9( active form ) or folate.

[LeharLover62 in reply to Kia17]

Certainly worth a try (at this point we’re getting pretty desperate) any idea on dose?

[LeharLover62 in reply to Kia17]

So we gave the folate supplementation a try a few weeks ago. Gently. I gave him two doses of 1Mg 2 days apart. After the second dose, he went on another weeklong binge of hallucinations every day. I suspect that folate also increased his dopamine levels, as he was in a ‘low dopamine’ state prior to taking where he was sleeping most of the day.

For now, we’re avoiding all changes and he’s doing fine again, until we get through his first appointment with his new movement disorder specialist. Though the dr at the MDS clinic in the initial consult recommended lithium orotate. Maybe after a few weeks of r and r.

[Kia17]

I would take 800mcg (micro grams) of Methylated folate for a few days an then 400mcg (micro grams) daily for some times with 10mg of B6 (p-5-p) which is active form of B6 daily and stop taking b12 for sometimes.

[LAJ12345]

Maybe some other nutrient is depleted. Try Hardys daily essential nutrients with extra vitamers.hardynutritionals.com/blog/...

[Hidden]

I was wondering whether he should more properly have a diagnoses of Lewy body Dementia. Has that been considered? mayoclinic.org/diseases-con...

[LeharLover62 in reply to Hidden]

Well, I always worry about LBD, but my understanding is that it usually progresses really fast. He’s had PD for 16 years, and is only dealing with the hallucinations about the last 4 years. I assume that’s why they think PDD.

[Hidden in reply to LeharLover62]

Hallucinations are more usually a symptom of Lewy Body Dementia and not PDD. I wonder if one can morph into the other. apdaparkinson.org/article/u...

[pdpatient]

Hi Leharlover, I am sorry about everything that you and your husband and family are going through. I won’t complicate the situation and conversation by introducing my suggestions for other supplements and medication. I can of course tell you to take immediate action and help yourself with official mainstream medical intervention before it becomes too late. I admire your husband’s resilience and yes, the human body is amazing in its ability to recover from the depths of hopelessness. However, I don’t see a point in having him go through this kind of suffering. I hope that you have medical insurance.

I am going to suggest that you take your husband to the nearest hospital with a good Movement Disorders Clinic. If you are in or near Houston, then Baylor university would be a great choice.

I pray for your family and your well being and I wish you all the best.

RKM

[Hidden]

To me it looks like there could be drug interaction problem with the Mannitol or B1, so quickly checked out a few med interactions - the Effexor and Mannitol interaction could be problematic, both can cause hallucinations by themselves, so combined who knows....would ask your neuro. That said, I'm not seeing the B1 interaction as a problem, but you should probably check that one as well.

iliveok.com/health/mannitol...

ehealthme.com/ds/effexor-xr...

As for what I take to reduce my dopamine meds, that would be primarily Ambroxol combined with a few other key supplements.

[LeharLover62 in reply to Hidden]

Interesting! What is the effect of Ambroxol?

[Hidden in reply to LeharLover62]

for me the #1 benefit is cognitive, keeps me clear headed with no PD brain fog (which I believe is critical in avoiding PDD down the road), but I have also had some motor benefits over time (have been taking it 17 months now), as well as PD shoulder nerve pain elimination and reduced PD meds ... for me all that translates into slowing my progression.

Here is a couple of trial links to get you started on your due diligence if interested:

Completed

jamanetwork.com/journals/ja...

Ongoing

bmcneurol.biomedcentral.com...

[Astra7]

No meds after 12 years is very unusual. It all sounds very odd.