[Robert]

Hi all

I used to suffer terribly with this problem and tried everything I came across as a potential “cure” but I never found one until I was introduced to Sean Casey RD, CSCS of caseperformance.com

He calls himself a Sports Nutritionist but he is so much more than that! He lives in the USA and I am in the UK so all our contact and consultations have been via email or Video Link. During my first consultation Sean took details of my life style, eating habits, supplements, medication and my Parkinson’s journey so far. His initial concern was to cross reference my medications with my supplements to ensure there was no conflict. At the same time he was looking at my diet. He followed up with a detailed eating plan and a complete review of my supplement regemenleaving almost nothing unchanged! Wow! Is he ever good at what he does, within a few months of sticking to his regimen my constipation was almost completely gone and, I don’t know if this is my imagination or not, my mind seems much clearer. I don’t know if I am allowed to do this on the forum but, if anyone wants to contact him his email is [email protected] or you can contact me and I will put you in touch with him. I suppose I should also tell you there is no business relationship between him and myself other than I trust him to advise me on diet, exercise and supplementation completely.

[Robert]

Hi Troy

I used to suffer really badly from this and was terrified that I would harm my wife during one of my “acting out” nightmares. My doctor prescribed half a 500mcg clonazepam 15 minutes before sleep and they have been wonderful! Not only have the terrifying nightmares stopped but also the “acting out”. One tiny warning though, if I take ANYTHING new (medication, supplement, alcohol) that changes my brain chemistry the nightmares and acting out often come back but much milder and only for a day or two. As you can imagine, I am very careful what I take and when but the clonazepam – brilliant!

Good luck

R

[Robert]

Hi Bob

Your finding illustrate my problem!  I accept that your findings are a perfectly reasonable assumption but then if you look at Margaret’s coments above then she is taking 800mg of Mucuna from  two capsules  which produce 120mg of L-Dopa (about 15% of the total) so, if that were correct, the British Supplements Mucuna that I take (two caps a day) are 240mg of Mucuna each which would produce 36mg per capsule of L-Dopa at 15% of the total.  This would be, I think, a significant reduction on my daily intake of Madopar if the 100/25mg Madopar is producing 100mg L-Dopa or is it producing 15% of 100gm which would be 15mg of L-Dopa significanty less that the supplement?  That’s also dependent on if the Levodopa in Madopar is the same as L-Dopa. It just becomes more confusing!

[Robert]

I suffered with constipation for many years before I was diagnosed with PD. Now I take two pouches of Macrogol (as Laxido) every morning and one pouch every other night together with two 7.5MG tablets of CenLax (calcium sennosides) every night. This has helped a little but what has really helped has been a lunch of mixed fruit every day and salad dressed with Extra Virgin Olive Oil and Balsamic Vinegar at night. I have also tried to up my fluid intake which I find surprisingly difficult.

[Robert]

I was having awful nightmares. Very physical, lots of “punching out” and violent movement. Now I take 250mcg every night just before sleep and the nightmares and violent movements have stopped. However, I have noticed that if I introduce any new medication or new supplements that work on the brain I will get one or two nights of mild nightmares. As far as helping with my poor sleeping pattern is concerned it doesn’t help at all.

[Robert]

I tried Mannitol for several months, originally the Israeli one then an organic one.  It had no effect at all so I guess it’s different for different people like so much with PD!  Very pleased for you though Thomas,  I hope it continues to work for you.

[Robert]

Hi Daniel
Yes, I’ve tried beta blockers. Unfortunately I have a very slow heart rate so they don’t suit me. Dropped me down from low to mid 50 bpm to low 40’s. definitely don’t recommend that ?. My tremor also gets worse with anxiety, hence the diazepam as I have had no luck with any other anti anxiety meds.

[Robert]

Hi Todd

Interestingly, no one has ever suggested that i might have Essential Tremor.  I have seen four different movement/Parkinson’s consultants and they all concur that i have PD.  From looking on the internet i don’t think i fit the Essential Tremor profile.  Many thanks for your thoughts though.

[Robert]

Hi James

Xanax isn’t generally available in the UK although I think it can be purchased on a Private Prescription if you can get one.  I find small doses of Diazepam (same general group of meds as Xanax) can be helpful on occasion but, I think, that is more dealing with Parkinson’s anxiety than the actual tremor.  I have noticed that the more anxious I become, the worse my tremor!  I gave up the gym when Covid-19 became a concern and now do limited exercise at home. I was hoping someone on the Forum had “discovered” a supplement that helps alongside of medication.

Anita/Andrew, I am on similar medication to you but it doesn’t help with my Tremor.  I think that all PD sufferers get almost a unique set of symptoms and mine can vary from day to day but Tremor stays consistent for me. It is a constant reminder of my PD and adds to my anxiety.  A vicious circle!

[Robert]

Hi Russ and Murray

I have started on the Butyrate but the recommended dosage is 2 capsules three times a day which equates to 6 capsules a day not the 12 you are taking.  Are the directions different on my Butyrate to yours or are you doubling up?  I am very keen to give Butyrate a realistic go.

 

[Robert]

Hi Russ

I also take Butyric Acid but much less than you do. I also take Shark Liver Oil.  I would be very interested in knowing what brand of Butyric Acid you take and also what type you take Sodium Butyrate or Calcium Butyrate? Please could you also tell me what Niacin you take?

[Robert]

Hi Margaret

you see, that’s exactly what I don’t understand! If your 2 capsules of Mucuna contain 800mg of Mucuna and 120mg of the 800mg total is L-dopa what is the rest (680mg)? On the face of it each of your capsules deliver 60mg of L-dopa but does that equate with 60% of one of the 100mg Madopar capsules prescribed to me? It’s a puzzle I can’t solve!

However, I will say this to you, I really regret stopping the Mucuna in favour of the Madopar but, at the same time, how can we ignore the expertise and advice of our Neurologists? Hopefully, someone on here will be able to shed some light on this issue.

[Robert]

Hi Karla

which one have you not heard of? Mucuna is derived from an Indian (Asian) herb (?) and, as I understand it, has been used extensively in Indian medicine for hundreds of years.

• Madopar is a form of co-levodopa a pharmaceutical medication similar, I believe, to Sinemet. I am fairly sure that Madopar isn’t used in the USA but I don’t know why not.