Gnawing Anxiety One Year Later Post PM..

Hello all,

So it is 16 months after my PM implant and I'm still riddled with anxiety. In January of 2019, I woke up feeling fine. Made coffee, answered an email. Suddenly it was like I came out of a fog and my left arm was shaking as if I was having a seizure. I had two more episodes (the third time I woke up on the floor bleeding from a minor cut). Believe it or not (and no sermons please, I've had a million since it happened) -- I drove myself to the hospital a half mile from my house and told the ER staff I thought I was having a stroke. That's because every time I would go into a "fog" my face would go numb. So they got me to the CT scanner.

As soon as they finished the CT scan, BAM, I went into asystole. I came to with them asking if I was okay, then they rushed me to the ER. 15 minutes later, I told them my face was going numb again and that's when I had a second episode of asystole, When I came to, the room was full of ER staff, a crash cart was at my feet and a cardiologist was giving orders. He told me I was in third degree heart block and had to have a pacemaker. After I stabilized, they rushed me to their main hospital campus 25 miles away with an ER nurse caring for me along with the EMT staff. Two hours later, I was implanted with a Medtronic two lead PM. I did so well, I went home the next morning and was out of work two weeks. By the way, I am not PM dependent. It only kicks in if I go below 60 BPM. 

Four months after the PM implant, I went for my first follow-up. My heart rate was a bit high so my EP put me on Toprol XL low dose (25 mg). A few months later, he increased it to 50 mg where I am now. It seemed to be sporadic episodes of sinus tachycardia. He asked if I ever felt my heart racing to which I said not that much. The doctor told me the ST was benign, just bothersome to some, and if it becomes an issue that won't respond to medicine, ablation may be the answer. He said if I ever feel like it is an emergency, go to the hospital immediately. Of course, Dr. Google only made things worse. I honestly left that doctor's visit more confused than I did going in.

So now, every time I feel a twinge or something odd, I seem to panic. First thought: it's my heart. I've been to the ER once this past year (in December) because I felt like I couldn't breathe and my heart rate was 100+ BPM and my blood pressure was something like 180 over 90. All tests including a ECG were perfect. My BP even went back to normal in the two hours I was there. The ER doc said he thought I probably panicked and not to fret, better safe than sorry. I've been to my family doc probably 6+ times (my thyroid is goofy at times - I have hypothyroidism) and we always discuss my heart. To make me feel better, he sent me to another EP at a major hospital/medical school for a second opinion. The second opinion EP even he agreed with the care plan of my primary EP. But to make me feel better, he put a Zio XT on and I'll know the results in a few weeks. I'm supposed to see my primary EP in July for my annual exam.

All of my remote interrogations are great. Not one episode indicated in my every-90-days interrogations. According to my EP's office, my PM hasn't had to work at all really. And my primary EP says I've not had any A-fib since the PM was implanted. And even though my heart flutters now and then, sometimes daily, sometimes once a week, I seem to be doing okay other than fretting about it. Even the second opinion EP said he thinks I'm doing well.

So why, even though I get good reports, can I not seem to move beyond the frame of mind that something more is wrong with me? Why is it that I seem to need constant reassurance that everything is fine? When people hear about my case, they always look at me as if the grim reaper is standing behind me. By now I don't even want to discuss it with people, even my own family. If they bring it up, I change the subject. I don't want to talk about it and relive it. Then when I get home, I brood over it all. The anxiety isn't good for me, I know that, but I cannot seem to get away from it. I'm 57-years-old but feel like the cardiac episode aged me by decades. 

Any help, tips, pointers -- I'm all eyes and ears. I know this is a long narrative and I appreciate you following along this far. And I appreciate whatever advice you can give me.

Mark 


8 Comments

Sinus Tachycardia and treatment

by Gemita - 2020-05-19 07:46:35

Hello Mark, two thoughts  

(1) You have been diagnosed with Sinus Tachycardia (ST) and told it is benign, but this will still presumably be happening periodically and if your heart rate goes over 100 bpm you may feel it and it could cause some unpleasant symptoms.  You have been prescribed Toprol (a beta blocker) presumably to help calm the ST when it occurs and the Toprol should help calm you too.  Your doctor has said that if the ST becomes an issue, ablation may be the answer.  ST may be becoming an issue, although I acknowledge that your remote interrogations have been good in your every 90 days interrogations.  However I also note that ER found your heart rate and blood pressure to be high last December, so your pacemaker may not be showing all your episodes of ST, particularly if they do not go above a certain set “high heart rate”.  I would ask your clinic if, say an ST episode of below X bpm (say lower than 120 bpm) would be automatically recorded by your pacemaker??  Sometimes they are only recorded above 130-150 bpm, so you may not be getting the true picture.

You are clearly feeling your intermittent episodes of ST and hopefully the Zio patch will give them info about frequency of ST and heart rate spikes and then you and your doctors can make a plan about how to proceed with any further treatment.   Any heart rhythm changes can be very unpleasant and cause some of us extreme symptoms and yes anxiety.  Some of us may not be so affected, but you are clearly very symptomatic to what is going on in your heart and this is not your fault, or a weakness on your part, so do not blame yourself.  What you are feeling is real and not imagined, so trust yourself.  I am the same, I am totally in tune with my heart and when it is out of normal sinus rhythm, I am very symptomatic.

(2) what to do about your fear, your anxiety that something bad is happening to you?  I would highly recommend cognitive behavioural therapy (CBT) if you haven’t already tried it as an effective therapy to help you discuss your fears on a one to one basis with a therapist.  Talking therapy is very helpful.  It takes time to address all your difficulties which go very deep but it is far far better than burying your anxiety and treating with medication.  Medication only suppresses your symptoms and fears and will never address them.  You may need help with medication occasionally if you become clinically depressed, but a therapist would rather you not take medication for anxiety while you are having treatment.  I had CBT many years ago when I had cancer and I am still using the therapy in my day to day life today.  I feel I am a better person for having had treatment, more aware of myself and my relationship with others and after having faced and survived cancer, there really is little more to fear.  I was offered CBT at my cancer centre and it was covered by our National Health Service in the UK.  I see you are in the States.  If your doctors are helpful, they may suggest CBT so hopefully this might be available under your current health plan?

You will get better Mark but you need time to work through your fears and they will go very deep.  Never stop believing in yourself.  That is the starting point here.  And never stop working with your doctors to get the pacemaker working right for you and getting the true picture of the extent of any rhythm disturbances that may be going on.

fear

by Tracey_E - 2020-05-19 09:56:31

You had a very traumatic time of it. I'm no doctor but it sounds like maybe you've got some PTSD going on? It can't hurt to talk to someone. Even one visit can give some useful tools for dealing. 

Anxiety

by Selwyn - 2020-05-19 13:27:55

A totally agree with Tracy_E.

Any normal individual having suffered what you have would have PTSD. As it is now 16 months on since the 'events', professional help is indicated.

More to the point, your anxiety can cause superventicular tachycardia episodes.

Anixety will also put up your blood pressure 

You could, 'Kill two birds with one stone'!  ( or is that 3 birds with one stone?)

Sometimes a change of beta-blocker will help anxiety as some pass into the brain better than others. These drugs also help lower blood pressure and reduce the chances of a superventricular tachycardia.

I know how you feel!

by arentas80 - 2020-05-19 14:46:26

Hello Mark!

I know EXACTLY how you're feeling. I was doing breathing exercises when I came across your post. I'm almost 5 months post PM but I still battle with anxiety daily. My world turned upside down last October and it hasn't been the same since. Just like you I'm passing all tests and nothing shows wrong however I know something still is so more tests are coming soon. At 39 I would never have seen a heart condition in my future let alone at my age now. I can only say take it day by day and try to do something which makes you feel like you're progressing and not getting stuck. I feel emotions played a bigger role in this than the actual surgery did. I know in time I'll make peace with this and I'm sure you will too. Just count your blessings and keep pushing for better days. All the best to you sir and may god bless you!

Alejandro

THANK YOU ALL!

by Mark.n.NC - 2020-05-20 00:00:26

I sincerely want to say THANKS to all of you for the wonderful words of encouragement! Especially Alejandro for sharing how you're feeling too. Although I wouldn't wish this anxiety on anyone whatsoever, it helps to know I'm not fighting the battle alone.  I wish you luck brother! So again, thank you all. It means a lot to hear from those in the same boat.

I'm pretty sure that I'm experiencing some PTSD from it all. The night I spent in the hospital post surgery, I didn't sleep at all. Groggy from the surgery and as tired as I was from it all, I was afraid to go to sleep, to even shut my eyes. Even though I wasn't supposed to get out of the bed, the head of nursing for the CCU allowed me to sit in a chair by the bed. Then when I came home the next day, I crashed and slept a few hours, but would wake up suddenly and wide awake. That went on for months. Months after my episode, my primary care physician prescribed some meds to help me sleep. That was the first time I could sleep for 6 to 8 hours straight. Dreams, nightmares, I had them all and I still do. 

My EP has told me that my thyroid could possibly be the cause of these episodes of my heart racing from out of nowhere. Then he added anxiety to the list. He has mentioned that several times. With all of the post-implant tests I've had done (including the 'anxiety' visit to the ER just before Christmas) which all show up as normal, it leads me to believe it may be PTSD. It's funny, this past weekend I noticed I only had one slight fluttering and it disappeared. I was occupied doing some shopping for things and my mind was occupied with things other than me. No issues. Even when I was busy exerting myself doing yard work, no problems. But as soon as I come in the house and it gets quiet, I start to feel it. I spend most of my time at home in the same room where the syncope began that day. When I sit in the same spot, I think about it. Not dwell on it, but it does cross my mind. So maybe there is PTSD involved. I truly don't want to admit it, but now that some of you mentioned it, that could very well be it.

I'm trying not to drive my EP crazy and push him away thinking I'm some 'case' because of every single thing I feel in my torso sets off mind alarms. But to me, the anxiety and the symptoms I feel are so very real. I was going to join a local cardiac support group that meets at the hospital once a month just for the fellowship, but because of work, that was impossible. But I know I need to reach out and try to deal with this in a better way. Obviously I'm spending a lot of time and money on something that isn't there when I could make better use of both. But honestly, I think I'll always feel a little bit of terror in the back of my mind. I'm pretty sure that even though the doctor may pat me on the back and say "great check-up and see you in a year" -- I'll still walk away with the feeling he missed something.

Plus I need an honest to goodness vacation. Believe it or not, I haven't been on vacation in three years. After some unpleasant life events including the deaths of my parents, separation after 22 years, then the death of our beloved dog, I threw myself into work to not dwell on my troubles. That all festered together in a relatively short amount of time and I just threw myself into my job to stay occupied. And I forgot about vacations. Then the cardiac episode happened and my vacation time was used as sick time. I've promised myself that I'm going to take my two weeks this year. My neighbor, a nurse practitioner for Hospice, truly believes that my cardiac event was brought on by the intense stress in such a short amount of time. True or not, I don't know. No one will truly ever know. But I do know I need to take better care of myself. I truly want to get it under control and enjoy life without the nagging feeling something is always wrong.  

So again, thanks to you all for weighing in and giving your insights. I plan to keep checking in here and letting everyone know how it is going. Plus work a lot harder to try to push beyond this rut I seem to be in. Wish me luck! 

Mark

Good luck

by Gemita - 2020-05-20 06:13:27

Thank you Mark.  The first step is always the hardest and you certainly seem to have taken that. Just to accept that you may have a problem is a huge step forward to getting better.  I wish you well and hope that you find the peace of mind you so deserve.

Therese

rough road

by Tracey_E - 2020-05-20 08:58:58

As the saying goes, when you hit rock bottom the only way to go is up. Trite, but true. I'm sorry you've had such a bad few years. You for sure need a vacation! Block out some dates and start making plans for something fun that's all about you. To echo Gemita, the first step is the hardest and you've taken it. You got this. 

Our pleasure!

by arentas80 - 2020-05-20 22:22:16

Hi Mark!

We're all here to help! I'm happy my words hit home and anything we can do to help by all means please reach out. Take good care and we wish you all the best!

Alejandro

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I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.