Really having a hard time

Sorry to bother you all yet again but yesterday I had to go back to ER for severe Palplations and feeling like my heart was just not beating right when I stood up and tried to walk, couldn't even do it.

Biotronik guy came in downloaded pacemaker and found everything to be working fine. I am so utterly shaken and find myself so anxious as to what is going on. The pacer is not picking up what I am feeling and that really bothers me.

I also have pots which is a blood pressure and heart issue which makes the heart beat fast and makes you pass out. My doctors came to the ER and told me they do not know what to do and asked me to go to the Mayo Clinic. I called for appt and the next appt is in 8 to 12 months.

I just don't know where to turn. Please help if you can. Thank you in advance.

Tina

4 Comments

pacing

by Tracey_E - 2013-02-06 01:02:06

All the pm will do is add beats when your heart is too slow or skips beats, so that's all the pm will pick up- pacing episodes. Unfortunately, POTS is much more complicated than that so the pm is only going to fix part of your problem. While Mayo is fantastic, there are other drs out there who have patients with POTS. If your dr can't help you, ask him to find someone closer who can see you sooner. 8-12 months is an awful long time to suffer!

Is there a waiting list for a sooner appt with Mayo?

I'm going to email a member here who doesn't check in often anymore but has POTS and lives a few hours away from you. I think she's been treated at UVA and Hopkins but not sure which one has been the most helpful with the POTS, will ask her

bad feeling

by Luq - 2013-02-06 01:02:07

Sorry to hear that. I have the same problem. Skipped beats, bad feeling, light headed and near fainting episodes. My pacemaker could not pick up anything. I was once interrogated for 3 consecutive days while with such a feeling. Many strong beats but the pm just recorded few pvcs. Its frustrating when u feel different but the findings make you look crayz.
May be sometimes our hearts just decide to misbehave..with n significant consequences. By the way, I hope u r not on medication. I was on amiadarone which made my feeling worse. I decided to stop it. Just with betaloc zoc now. Few episodes.
Luq

uva, hopkins

by TinaH - 2013-02-06 01:02:25

I had a ablation and now am being paced 100% of the time. I have went to Hopkins who could not help me and my doctor said the best was at Mayo, but I will look into UVA because 8 months is a very long time to wait.

Thank you for replying.

Tina

Mayo

by TalkinCardio - 2013-02-06 02:02:09

Hi Tina, when I needed to go to Mayo some years ago, my cardiologist made the appt for me and got me an appt 2 weeks out. Maybe if you talked to your doctor about the wait time, he or she could get you there sooner?? Just a thought. I sure feel for you.

Cathy

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