Not sure what to think

Warrning long post but I need advice. I am a 41 y/o female who was sent to a cardiologist for abnormal EKG and elevated heart rate at resting. So echo cardiogram, stress test, holter monitor came back normal. King of hearts showed that I had a resting heart rate of 112. The cardiologist at the time decided to refer me over to an electrophysiologist. With that appointment the whole 5 seconds he spend in the room stated my blood pressure was to low and if I can get my blood pressure up then my heart problems would go away so I started midodrine. To follow up in two week. Two weeks came and BP was still low so he then started me on Florinief and to follow up in two weeks. Durring that two week in October I was at work and I passed out in a meeting. 911 called and off to the ED. Where I spent the night hooked up to monitors which showed normal. I was discharged home that next day to go straight to the cardiologist office where I was placed on another monitor for two weeks. That monitored showed that I was having 1.5 second heart pauses every third beat but he said it looked good and started my on Bystolic with my other two medications that I was currently taking. As the weeks went on I felt worse and worse. Every two weeks I would go see the cardiologist and he would say I was fine but possibly needed a pacemaker because my heart rate was now 55. Finaly in December I passed out again and cardiologist put in my Pacemaker single lead on December 28. Since then I have not had the energy to get off the couch. Seen my cardiologist several times and he finaly told me that he could not fix everything. This upset me becuase just last August I was a very healthy active 41 year old. Just a few weeks ago I felt like I was going to pass out again and My husband took me to the ED and found that I was very Hypotensive. Stayed in the hospital for two nights untill my BP returned to normal. They took my off the bystolic but kept me on midodrine. I went to follow up with the cardiologist and I told him that my pulse had been running 125-130 and he said to not start and new medication and to let the bystolic get out of my system and my heart rate would retrutn to normal. Over that weekend my pulse was in the 140-150 at rest so I deceided to start taking my bstolic again and look for a new cardiologist. I since have seen a new cardiologist, he has put me on a heart monitor for 7 days but now wants me to start corlanor. I am scaed to death to start a new medication but I know that if I stay on the Bystolic for long period of time my BP will drop again. This new cardiologist is not understanding why I have the pacemaker to begin with. I'm depressed, I'm in panic mode all the time. Does anyone have any advice or wisdom they can share. Is corlanor a good medication? I see that is can cause Afib and that scared me. I'm starting physical therapy next week to see if I can set goals and regain some strength back. Any other suggestions? Is there a safe medication out there that can control my heart rate but not drop my blood pressure. Any advise is appreciated. 


6 Comments

Corlanor was great!

by Pinkit94 - 2021-03-09 22:35:43

Corlanor was a great medication, in my opinion, way better than beta-blockers. Beta-blockers just made me more tired, and borderline depressed. Corlanor affects the heart rate but does not affect the blood pressure. I had a great response to it, and if I ever need heart rate lowering drugs, I will start back upon it. My only side effect was seeing "halos", certain objects just look brighter (this is a common side effect, but don't be alarmed), it does go away. As far as afib, patients with pacemakers have a greater yearly rate of afib than corlanor patients. I had a similar story, I started having a fast resting heart rate, then suddenly it got very low. My blood pressure dropped I was and still occasionally take midodrine. I ended up having a rare genetic heart condition, had an icd placed, and several high-risk ablations. I've been doing well ever since. I have walked in your shoes, I know how you feel,  I always warn other patients about the post-device "blues". My greatest advice is to acknowledge how you feel, then take a break from everything that is going on, and find something positive to look forward to(I signed up for a local painting class). Slowly life got better, and it will get better for you too!

Ivabradine

by Beattie - 2021-03-10 06:04:05

I have been on Coralan since 2011 quite a high daily dosage i find it somewhat helpful along with 2 other antiarrythmics , as per the above Comment it tends to have minimal side effects.

I also take Pyridgostimine(Mestinon) which a Neurologist put me on for Autonomic Dysfunction. Not sure how it works but it does help. 

I hope you feel better soon. 🙂

I hope my long message helps

by Gemita - 2021-03-10 08:48:15

TMCCOY16,

I am so sorry to hear of your experience.  It is very difficult to know how best to help you, but I will try.

Looking at your post, what stands out time and time again is that there seems great uncertainty about your diagnosis and what is really causing your symptoms?  That is why they are still monitoring.  

Do you know what was seen on your first abnormal EKG which led to a cardiology consultation or can you explain why you had an EKG requested in the first place?  In other words why did you seek help from a doctor - what were your symptoms - since you clearly seem to say that you were a healthy 41 year old female before this all started ? 

Was an arrhythmia ever seen by chance on your initial EKG because an underlying arrhythmia can really mess with both heart rate and blood pressure.  In my experience getting an arrhythmia under control can often get the heart rate and blood pressure under control.  And an intermittent arrhythmia can be notoriously difficult to detect without long term monitoring - up to a month or beyond.  Long term monitoring could pick up the reason for your palpitations but more importantly the reasons for your syncope.  

Syncope can have many causes though, not necessarily related to an arrhythmia or to your heart and I presume your doctors have carried out a full range of blood checks as well as the heart related checks, but have you had any nerurological checks?  Syncope can occur due to autonomic dysfunction which can also affect heart rate and blood pressure. It is therefore important to find out why you are getting these episodes.  Longer term monitoring would certainly help to arrive at a correct diagnosis and help with finding the right medication or treatment for you.   

The EP you saw pointed to your blood pressure as the problem but prior to your medication, did any doctor carry out tests to determine whether you really had consistently low blood pressure, because a one off reading wouldn’t necessarily be conclusive?  I have naturally low blood pressure but intermittently I get sudden, serious blood pressure drops associated with arrhythmia and autonomic dysfunction but these need to be ideally confirmed by longer term blood pressure monitoring (in addition to event monitoring for the heart rate/heart rhythm).

I note you have had numerous fainting episodes but no real diagnosis for these, following an event.  I hope your new Cardiologist is able to help you.  He seems to be asking all the right questions, although if you are still having fainting episodes, you may well benefit from your pacemaker since I note that he is questioning your need for one?

I see you have a single lead pacemaker (presumably to the right ventricle) to support you when you faint.  I am surprised they did not offer you a dual lead pacemaker since this would have given more natural pacing, but perhaps there was a reason for a single lead implant?  You could perhaps ask about the benefits of a dual lead pacemaker upgrade at some time in the future but you have more than enough on your hands at the moment. 

I had to press for permanent monitoring to see what causing my syncope - which turned out to be partly intermittent arrhythmia related and partly due to Reflex syncope.   A dual lead pacemaker was implanted for the bradycardia and sinus node problems and I am handling with some success the autonomic nervous system problems, by keeping well hydrated which can quickly improve blood pressure, and by having treatment for my swallow syncope.  I also do a range of tension exercises (leg/arm muscles) to try to prevent a fainting episode from occurring, especially if I get a warning beforehand.  I wonder whether a referral to a neurologist might be helpful for you?   They could quickly arrange a few autonomic tests to rule in or out neurogical problems. 

I am on a low dose beta blocker (Bisoprolol 1.25 mg) and at this dose it doesn't affect my blood pressure but still keeps my heart rate under some control. Anything higher and my blood pressure plummets.  For me it seems to be the best solution.  Bisoprolol is also very good at calming me and my arrhythmias when I get tense.  I note you are in panic mode - this won't be helping your heart rate which will be responding to your tension. 

In your shoes, I would ask for a referral to a neurologist for an opinion on your symptoms (blood pressure, heart rate and syncope) and I would also respectfully ask for longer term monitoring (one month or beyond) - 7 days is not enough - to look for an arrhythmia as a cause for blood pressure/heart rate changes and syncope.  Syncope is an indication for a Reveal Linq implant in any event, and it is one of the best ways of detecting an arrhythmia as a potential cause.  After years struggling for answers with short term monitoring, it gave me a firm diagnosis after a few months. 

I wish you all the very best and a proper diagnosis soon

 

Not sure what to think

by Selwyn - 2021-03-10 12:59:55

- nor are your doctors!

You need a good general medical opinion.

I don't know what your general medical work up has been before all this cardiological fiddling. I am unsure as to the original EKG changes.

Let's just let our imaginations run riot a little - have they excluded Addison Disease (Adrenal insufficiency), Thyroid disease, etc. etc .( include the neurological).

Ultimately, specialists  do what specialists  do ( A lot of knowledge about less and less). Find yourself a good general medical opinion and get a diagnosis! 

 

Not sure what to think

by Tmccoy16 - 2021-03-10 20:14:55

Thanks you guys for the information and the encouraging support. I have another appointment with cardiolgist tomorrow to talk medication. I just want to make sure that I am making the right deceision for me. 

Interesting

by Lacuna coil - 2021-03-13 04:20:28

You were smart to find a different cardiologist. The prescriptions I'm on are, entresto, metoprolol, furosemide,spironolactone..they really controlled my blood pressure. When I was first diagnosed with chf, my blood pressure at the hospital was 174/156 and I was 43yrs old, I'm now 47. 

 

You know you're wired when...

You make store alarms beep.

Member Quotes

I am no expert, but I believe that without the defibrillator that I have, I would be dead.