enough is enough

67 Y.O. Male: I had chronic A-Fib for decades.  cardio version did nothing, all the meds we all have been prescribed to regain sinus rythym did nothing, after ablation and implanting(12 months ago) a St Jude ICD, the Dr's at Mt Sinai in Miami kept me on the pre implant A-fib medication regimine. Xeralto (rivaroxiban), carvedilol, and lisinopril. My hreart now beats at a consitent 60 BPM even after strenuous exercise, nothing seems to affect an increase, it is somewhat bizarre to me. My point is:

The Xeralto knocks the living daylights out of me! Fatique complete lack of energy! Dizziness, lightheaded, I can barely walk across a room. If I bend over and then straighten up,I begin to faint and grab for a wall. Dimentia, Shortness of breath, like waking apnea, I realize suddenly I am not breathing, I lye down and find myself gasping for breath as if I wasnt getting enough oxygin,  Exhaustion; I hit a wall at 2:00 pm every day, and will sleep for hours.  Numbness in extremities ie: legs, feet, finger tips. Sweat, like a race horse sweat..............

ENOUGH IS ENOUGH:

I stopped taking xeralto four days ago and instead a self administered 180 MG of enteric asperin. No physician will risk his reputation prescribing this. I have never had high blood pressure the Lisinopril is next. The beta blocker: I am still researching it is a primary cause for sudden sexual disfunction. All the preventative  meds are not allowing me to live a full life! The entire reason I opted for the ICD implant in the first place.. 

In conclusion: Xeralto is almost completely out of my blood stream and I feel alive again! I can breath normally, no more fatique, lightheaded dizziness, tingling fingers, toes & numb legs! I can walk normally. All the nasty side effect: gone! I realize I have gone against the best medical advice, but all these preventative medications are killing me! These expert cardiologists have to prescribe these meds because if the dont, and I have a stroke, or keel over, they wont be held accountable, they have no choice. However as an informed patient that scours the internet for intel..... I do have a choice. The question to be answered next: Was it the correct choice?....... time will tell...Lub Dub, Lub Dub, Lub Dub.........


5 Comments

get a new doctor

by Tracey_E - 2018-03-11 19:04:32

It sounds like you may be reacting to the xeralto and I can tell you with a high degree of certainty you are probably feeling the side effects of the beta blocker. However taking yourself off them is highly dangerous and not the answer. Not taking them is not the answer either, untreated afib is a recipe for a STROKE. 

Beta blockers can keep your rate down on exertion, however pacer settings can be adjusted to compensate. Don''t push it until your settings are adjusted.  Exercising when the rate is too low is hard on the body. 

Russian Roulette

by Tony Stark - 2018-03-12 01:56:43

I dont want to give the impression I am such a renigade or that I am playing Russian Roulette with my existance. My Dr's are actually world reknown. They are also bound by the risks of treating the public. Legal back lash. They wont risk not treating every potential ramification of A-Fib by not prescribing every single medication on the market engineered to manage every potentiality. Rythm, palpitations, blood pressure, beta blockers, adrenalyn, potassium, calcium. If a new drug comes out tomorrow, I expect to have it added to the daily handful of meds. According to my rythm specialist I most likely have had A-fib for decades.  At 65 1/2 I had 1st  Congestive heart failure with a 120 BPM non stop flutter. 1 1/2 years later, I have an ICD pacemaker & defribrilator, and a steady  60 BPM. I dont answer to insurance companies or medical boards so I feel empowered with the knowledge that my only concern is blood clotting and stroke, and therefore can medicate outside the confines of modern pharmacopia. The blood pressure meds, beta blockers, and especially the life crushing xeralto are  probably  overkill. It seems clear to me: the asperin regime I had myself on prior to the congerstive heart failure episode were responsible for  preventing the uncontrolled clotting and potential stroke, and now are all I need, now that my rythm is paced, and I am not in A-fib. As far as finding a new Dr. is concerned. 60 days after getting my St. Jude ICD pacemaker/defribrilator inplanted, after all the settings done; I moved to the Philippines.  I dont have medicare here, I am on my own. I will return to U.S. in 6 months for an annual check up. Until then I rely on the ICD to keep pace, the last ablation finally stopped the A-fib, and therein is my justification to titrate off the life crushing meds, and manage platlettes and potential clotting with enteric asperin. All the other meds......just to prevent a recurrence of a condition now managed by my ICD? 

 

Recall List?

by Grateful Heart - 2018-03-12 09:55:34

I posted a long response to you about 6 posts above this one, when the site wasn't working properly.  Not sure if you saw it so I am just reposting the main part here. 

If your HR is a steady 60bpm, check to see if your device is on the recall list due to battery depletion.  Here is the link:

https://www.sjm.com/en/patients/arrhythmias/resources-support/battery-advisory?clset=af584191-45c9-4201-8740-5409f4cf8bdd%3ab20716c1-c2a6-4e4c-844b-d0dd6899eb3a

Grateful Heart

Participating in our care

by Gotrhythm - 2018-03-12 16:11:54

It often useful to ask the doctor, could the medicine I'm on be causing me to feel the way I do, and is it possible another mediicine would work as well without the side effects.

I also think sometimes we need to ask, what will happen to me if I don't take this medicine?

Doctors are always choose a course of treatment that has the best chance of lengthening life. But where quality of life is the issue, sometimes we need to weigh the risks vs benefits and decide for ourselves whether or not to take a medicine or have a procedure.

Coulda, shoulda, woulda

by Tony Stark - 2019-01-08 16:29:18

In conclusion, as it turns out......... All I needed was to have my accelerator turned on!!! I was set at 60BPM and was sufering from oxygen deprivation due to too slow a heart rate. I max out at 110 now, and although I still think thtat s too low considering my lifelong hyperactivity, it solved the big mystery of why I couldnt walk across a room without feeling faint. Altering my meds was a critical mistake, but I was desperate and 9,000 miles from Mt. Sinai Hospital in Miami. 

p.s. It cost $27.00 for a Philippine Cardiologist to adjust my rates and check my P.M. setting & battery level............ here I was woried about no insurance and the costs of a check up!

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I, too, am feeling tons better since my implant.