PD and cardiac symptoms

[Toni Shapiro]

Hi Jorge,

I don’t know what is going on with the pain and pressure I feel in my chest almost daily. Until I read your post I hadn’t thought that it could be Parkinson’s related.  I don’t know why it didn’t occur to me since pretty much every thing else I have is related.  I am waiting for the results of a chest x ray and a dye scan but to date my doctors can’t tell me exactly what it is or what it isn’t so I wasn’t given a treatment.  I just live with it and take detailed notes as to where the pain is, degree of pain, time of day, what I was doing at the time and a description of the pain as my Doctor requested.  I also report my Blood Pressure and Heart Rate that I take numerous times a day. Hopefully the doctors will figure it out once they have the information I am collecting. Unfortunately I don’t have any information concerning treatments.   I can understand your frustration. All the best to you.

[Katherine]

Hi Jorge,

In the summer of 2021, I began having a creepy feeling in my chest (heart area) which felt like a fish “flip-flopping”.  I was 68 years old and had PD for 7 years at that time.  My  Internist ordered a 10-day holter monitor, and then said that it was “normal”.  I knew that something was wrong, and requested a referral to a Cardiologist who immediately made the correct diagnosis.  I was on a hypertensive medication called Lisinopril.  The Cardiologist added a second anti-HTN medication called Diltiazem 120 mg.  Initially I was started on the medication once a day, but by evening the symptoms were back, so the dose was increased to 120 mg twice a day.  NO symptoms since!  I wouldn’t expect a Neurologist to have much expertise in this area (mine didn’t), but you are correct to go to a Cardiologist.  You put it as “Cardiologists” — i.e., plural.  How many have you seen?  Are any of them practicing in a large “teaching hospital”?  WHAT TESTS have been done?  I am concerned about your symptoms.  Someone needs to get to the bottom of this.  There’s something called “enjoyment of life”.  It is not the same as “life threatening”.  My symptoms were not life threatening”, but boy!  Do I feel SO much better now that I’m being properly treated!  (P.S.  I am a doctor.  I had to retire at age 59 b/o disability.  I was a Psychiatrist, so Internal Medicine and Neurology were both in my past — although I did Internships in both.  Yes, really.  So I do have some sense of what I’m talking about.)

[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.

[William]

I had to stop Rytary because it caused me to have powerful PVCs. My heart was jumpong out of my chest. I am having trouble regulating my blood pressure recently. I have been on med for bp for years always 120 over 80 but now if I take my meds I’m running 90 over 60 with orthostatic hypotension. Taking bp several times a day and medicate only when high 130 over 90 or higher. Trying a lower daily dose now in an attempt to regulate better. Always something with this damned disease!

[Katherine]

Wow!  PVC’s can be deadly.  Thank God you survived them.

[Laura Mahony]

The first thing to do is to check to see if any medications you take can cause cardiac arrhythmia. Drinking soy milk caused me to have it as well as all of the eyedrops used to treat glaucoma. Good luck!

 

[Beth T Browne]

Hi. I had a mild heart attack end of July. Was only in the hospital 2 days. My heart doctor said my leaky heart valve was not the cause, but my primary, who was a heart doctor in Germany at one time, thought it was. I under went a procedure with the heart doctor so he could check some thing. Then a short time later, I was accepted at Cedar Sinai to be tested to see if I qualified for a new valve. It would be with a valve not yet approved by the FDA, but a lot of testing has been done. They decided I didn’t need it. I had two false alarm heart attacks before I went for this. I was wondering if PD had anything to do with that. I occasionally have had a chest pain but it didn’t last long. PD affects so many things. I thought I had a UTI a year ago. All the symptoms, but test showed negative.

[Katherine]

I’ve calculated 20 problems (mostly autonomic nervous system, but not all) which are rarely considered by laypeople– AND doctors — caused by Parkinson’s disease.  Sometime I will list them all here.  For now, I agree 100% with what you say about PD affecting virtually every  part of the body.  I hope that your cardiac problems can get straightened out to your satisfaction.

[Ted Almon]

I have had paroxysmal Atrial fibrillation for about 5 years before my PD diagnosis.  I take the blood thinner, Xarelto and a Beta Blocker, Propanolol as the only treatment, but the AFIB has been worsening and none of my providers at the Mayo clinic have suggested there is any connection between the two disorders, so I have been assuming they are unrelated.

My neurologist tells me that the most effective treatment for slowing the symptoms of PD is exercise and I have been diligent about my daily workouts, but the AFIB is making it harder to get through them.  I have an upcoming appointment with my Electrophysiologist so I will ask your questions and post his answer.  Interesting discussion.

[richard cooling]

Hi Jorge-
Just curious, how much sinemet do you take daily to feel well?
Thanks,
Richard

[Toni Shapiro]

Hi Katherine,

This is Toni.  Thank you for your post.  When you mentioned at least 20 symptoms and that one day you would list them all I found myself wishing you would have done that in your post. I am very interested.  I posted a new topic asking if participants would list all of their symptoms that are PD related.  I think we can learn a lot from each other.    Had  Jorge not posted this thread it might have taken me a much longer time to make the connection between cardio and PD.  Since seeing his post I have been reading research papers and other articles on the topic and and I am grateful for all the information that is out there.

[Doug Duane MaGee]

Jorge, I’ve had PD a number of years now. I’ve had a rising heart rate, and tachycardia episodes, some lasting up to 3 hours, at 122bpm! The Neurologist told me it was all PD related, that PD was attacking my autonomic system! So, he put me on Propanolol, which helps a lot, but, occasionally I still have tachycardia episodes. My heart was thoroughly checked out, about 8 years ago, and tests showed it was ok. Just recently one episode lasted nearly 4 hours. I took 2 Sinemet after 3hours, and took a Propanolol, a little early, 2 hours into the episode. It was a bit concerning that it lasted so long. I did not have shortness of breath, or pain! So, with you having the symptoms u have, that is different from mine, in a way! Good luck!

 

[Marlene Donnelly]

I was diagnosed with PD 12 years ago.  Three years ago I began feeling dizzy, this only happening when I was riding as a passenger in a car.  I didn’t think much of it for months, but since it seemed to be getting worse, I had it checked out by a cardiologist who did not find anything wrong.  He did ask me to keep a record of my blood pressure and pulse rate, and we found that my pulse at times dropped quite low.  I was hooked up to a monitor, which I was expected to wear for a month, but four days later my cardiologist called me and said to get to the closest hospital (I was in fact out of state on a trip) because my heart had stopped that morning for a short amount of time and he wanted me to get a pacemaker implanted ASAP.  The monitor also noted heart arrhythmias.  I mention all of this because I too believe that PD plays a part in this and probably many other heart conditions, even if nobody yet understands exactly why.  And yes, I also experience chest pain that nobody has been able to explain.

[Kim]

I have had SVT for several years and now that I know I have PD I am convinced they are related.  I get tightness in my chest when I increase exercise intensity even though I was a fitness instructor for almost 40 years. Not as often now that my PD is treated, but my heart occasionally still trips into a 160 beat rhythm and doesn’t stop until I am in the ER receiving a shot of adenosine. This actually briefly stops the heart so that it can resume its normal rhythm. It is NOT a good feeling! I still do yoga and walk, but intense exercise is no longer possible. And my doctor has also said it is not life threatening but it is still worrisome to me. Wanted to share. By the way I am 59 and diagnosed 2 years ago.

[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]

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.