[Jorge O Mariscal]

Thanks for sharing, Kim. 160 BPM would scare anyone. glad medication is helping. I am sure you, like me, believe that Drs are missing something.

[Jorge O Mariscal]

Thank you all for sharing your “heart felt” experiences. Crowd sourcing is a wonderful thing about the internet. For those interested in autonomic disfunction of the heart, I recommend reading “Sympathetic innervation of the heart: important new insights” by J.H. Coote and R.A, Chauhan, Elsevier 2016. It is technical beyond my full reach, but its main ideas resonate with my symptoms, and the authors discuss promising therapies. In a study I am part of at NIH under Dr. David Goldstein, head of the Neurocardiology department there, several PET and CT scans confirmed denervation of my heart presumably caused by PD and present to varying degrees in the vast majority of PD patients, according to Dr Goldstein and his research. As PD progresses the heart gets partially disconnected from the brain. This leads to HR and BP variability, hypotension and possibly, though not frequently, to arrythmias and chest pain. That is the theory, but there isnt much in the way of effective therapy. I have tried several beta-blockers, though I havent tried Propanolol, anti-inflamatories and pain killers. I am currently on a low dose of Nadolol which is supposed to help with the arrhythmias and chest pain. I use Tylenol and Advil to diminish the pain.

Katherine: thanks for your concern. I have consulted with top cardiologists at the Mayo Clinic in Rochester, John Hopkins, the Cleveland Clinic, Mount Sinai, NYU Hospital (Dysautonomia Center), Columbia Presbyterian, Weill Cornell and NIH. I had an angiography at Mayo 6 years ago, numerous MRIs, CT scans, Echos, stress tests, and have worn many Holter monitors. I had sleep studies as well. They all conclude that my cardiovascular system is ok and that my arrhythmias are not life-threatening, and not frequent enough to be ablated or to justify the risks of taking anti-arrhythmic medication. They cannot explain why I feel the arrhythmias in the first place so strongly, or why I have the chest pain. But you are so right about the quality of life. I had to end a successful 30-year career in Wall Street, not because of motor or mental effects of PD, but because the issues with my heart.

Ted: It has been amazing to me how many cardiologists are ignorant about the connections with PD. Fortunately, there is a small but growing number of cardiologists and neurologists connecting the dots. Hopefully, they will come to a better understanding and more effective therapies. Exercise has been key for me. I exercise 4 times a week for 45 mins each with an individual trainer. Luckly, I dont typically experience chest pain or arrhythmias during exercise.

Richard: the “cocktail” that remains effective for me after almost 8 years with PD is Sinemet 25/100 X3/day (8am, 1pm, 7pm), Rasagiline 1g at 8am, Amantadine 100mg at 8am and N.A.C., an antioxidant that the folks at NIH believe can be a retardant. I don’t yet experience any dyskinesias and only slight tremor on my left arm. Rigidity in the off periods is my main challenge. Recently I am exploring Xadago to replace Rasagiline. Not yet suree if it is an improvement. Incidentally, my cardiac issues tend to increase when I am in the off periods from the PD meds.

Doug: I am glad you dont have the pain but seeing your heart race for hours must be disturbing and frustrating. Both my blood pressure and my heart rate are quite unstable though they rarely stay at extreme levels for very long.

William: I had a similar experience when years ago I tried a Neupro patch. I had heart skips for 12 hours. Since then, I have preferred Sinemet single action which I can control, rather than extended-release versions of it. I don’t know how much you exercise but regular exercise has helped me diminish my symptoms, including PVCs. Also, stopping alcohol and caffeine helps.

Marlene: it sounds like the pacemaker has improved things. As for the pain, I take x-strength Advil, which helps temporarily.

Toni: in my replay to you, I accidentally called you Tom, my apologies.

Thanks everybody for the great discussion.

Jorge

[Jorge O Mariscal]

Hi: I’ve taken Clonazapan 0.25.mg at night. I have found it very helpful to fall and stay asleep. I don’t experience fog in the morning at that dose. it can be helpful for anxiety. Occasionally used it for long flights.

Two drawbacks:

1. it can be addictive

2. it is a muscle relaxer so it can increase sleep apnea.

[Jorge O Mariscal]

Thank you for your note Tom. I am sorry that you have to suffer through daily pain. If you are interested, I Hebe been following research on the subject of dennervation of the heart which can be caused by Parkinson’s. Drs Coote and Chauhan from the Universities of Birgmington and Leicester in the UK have written some interesting pieces on these symptoms. I recently discovered that Dr Coote  died of old age a couple of years ago. But I have  been trying to contact Dr Chauhan, so far without success, though according to the University website she is a full time lecturer at Leicester.