change in meds, pd progression

[Jmellano]

diagnosed in 2015, My symptoms are:illegible handwriting,, bradykinesia, left foot cannot keep a clog on,Can't rollover in bed, balance issues, poor fine motor skills, can’t fold laundry, can’t put money into a wallet or items in a bag, swallowing issues, speech slurring, extreme fatigue, depression, lack of motivation and depression. I think I have most symptoms , although I don’t have sleep issues, constipation or tremor.

5/11 developed either akathisia or dyskinesia

Here are my current PD meds:

Carbidopa Levodopa (Started 5/11/24 try to eliminate dyskinesia/akathisia

25/100

1 tab 7am

Amantadine (started 5/27/24) try to eliminate dyskinesia

100mg

1 pill at 10am

Rytary

36.25 mg/145mg

7am (2)

10am (2)

2pm (2)

6pm (2)

8-9pm (2)

Rytary

Rytary 95 as of 6/3 taking this in place of a rytary 145 at 10am

I see doc this week to re eval my pd drugs. I am concerned he may prescribe more rytary or c/l as my bradyk , swallowing, speech and balance are worsening. Dyskinesia seems to have resolved due to amantadine, but other pd symptoms seem to be getting worse. I am worried about being over medicated with c/l , and especially after viewing the silver bullet presentation about that doctors perception of too much dopamine could be toxic.

Does anyone have any thoughts, options, recommendations for me?

[park_bear]

High-dose thiamine. Dosing instructions and other information at the links. Allow four months for full effect:

b1parkinsons.org/

healthunlocked.com/cure-par...

healthunlocked.com/cure-par...

facebook.com/groups/parkins...

A good source of thiamine HCl is here:

vitacost.com/vitacost-vitam...

[Jmellano in reply to park_bear]

Thanks park_bear, I have tried b1 but I struggled to find optimal dose . Any particular reason you think I may benefit from b1?

[park_bear in reply to Jmellano]

If you had trouble with it here is something else that has helped me and others - Cinnamon. Allow two months for full effect. My report healthunlocked.com/cure-par...

[Jmellano in reply to park_bear]

Thank you again park-bear. I love cinnamon! Your post that u referenced above has a lot of positive results reported with cinnamon. So I am thinking I should start with 6 grams , (approx 2 tsps )of Ceylon cinnamon powder preferably using a scale to determine 6 grams , Take 6 grams daily , mixed in my smoothie that has greens powder, collagen, protein powder, liquid vit c, almond milk , non dairy yogurt and frozen fruit. Hopefully, I might expect results in a few months. Does that sound right?

[park_bear in reply to Jmellano]

Sounds good! Let me know how it goes if you are so inclined!

[Jmellano]

will do. i willl order cinamon from amazon today. i am so weary of taking more drugs

[Thal]

I'm in my 77th year & 8th year since diagnosis and degenerating fairly progressively, I've been on madopar prescribed 3x100, 4x daily every 3 hrs.I've tried to usually take 2x100, 4x daily. I find that less is better for my over night and my mornings go a little smoother not needing meds til about 8 or 9 am. Able to prepare my minestrone breakfast with manageable tremors and feeling not too bad. I take extra doses of madopar when ever I'm involved in social situations that make me a little self conscious and nervous. I find when I do so the consequences and backlash is worsening tremors, fatigue , and awkwardness. I attribute all of this to overdosing on benserazide which if one were on sinemet or similar med would be carbidopa. It seems to me from general observation that carbidopa reaches a saturation point where it seems to over stimulate the effectiveness of levodopa. I've observed that in Europe the carbidopa ratio is available 10/100 not 25/100 . This i think is very beneficial once one reaches a total daily dose of 100 mg of carbidopa. So in my case if I take 12 doses a day I get 12x25 or 300 mg of carbidopa which I think is too much. In your case it also seems to be a lot of carbidopa. If I were on the 10/100 ratio I would gat a total of 120 of carbidopa. Also in your case I've observed that a slow release medication can have a stacking effect making it unpredictable. For that reason I've opted not to take a slow release medication recommended to me for overnight use.

I recently was assigned a new neurologist because my previous neuro was focused on DBS and so discharged me before I could work on lowering my carbidopa. Leaving me bewildered and lost.

Thankfully my new neuro has become a welcome, refreshing and very caring doctor who has introduced me to "entacapone" which she prescribed 200 mg 3 x daily. It has worked very well for me in that it has negated the need for me to go to a regular higher dosage of madopar which through trial and error I feel it to be counter productive.

Now in my third month of my trial I'm happy with it. It smooths out my day in that it makes the transition between doses less erractic. Thus reducing my off periods and made me a little more confident of the future where I hope to increase the entacapone dosage while reducing or at least keeping level my madopar and maybe reducing the carbidopa ratio to 10/100.

Entacapone other than inhibiting dopamine degradation has some other interesting properties. I recall from general reading that It inhibits ferroptosis, it's good for the kidneys, it is an inhibitor of melanoma and may have other healthy attributes for general well being and mental health.

Entacapone is available in a combination medication called "stalevo " which I look forward to cause it will make it more convenient and maybe more effective.

It can have some side effects depending on one s constitution. Such as diarrhea, constipation and mental health issues. So it's not for everyone. In my third month of trial I'm doing well and accomplishing my goal of reducing my dependance on madopar which from a layman's perspective I feel is necessary but can be detrimental.

Our desires for our health and wellness seem to be similar and I hope my limited experience will be good for us and all. Hope my thoughts, options and recommendations based on my limited experience and knowledge are helpful or at least a little food for thought. And that my enthusiasm for entacapone is not premature and not just another rabbit hole. Time will tell.

[Jmellano]

Thabk you Thal for sharing your experiences, I hope we all find our holy grail that will defeat this ugky beast of a disease.