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Unexplained Tachycardia - Help!
I am a 45 year old female. I have had SVT episodes my whole life, but over the last year they have become increasingly worse. I went in to a cardiologist and they dismissed my symptoms as they were not “life threatening”. After that, I was in the ER twice and was finally approved for an ablation. I had the first ablation in February. It was fairly extensive and they called it successful. Shortly after, I was back in the ER twice with more SVT episodes, however they were labeled atrial tachacardia. I felt horrible and my heart rate would rise to 140 or more just getting off the couch. On one of the ER trips, they put me on Flecanide and metoprolol and it was recommended to get a second ablation. These two medications relieved the symptoms to a tolerable level. I stopped taking it about 3 days before the next ablation in March per the Dr.s instructions. I went through the second procedure and they were unable to induce it and could not perform the ablation. They told me to go back on the meds and try a third one. I didn’t take any meds at all thinking maybe they were still in my system and that is why they couldn’t induce it the second time. They schedule the third one on May 2nd. Went through the whole thing again and they were still unable to induce it. My doctor is very frustrated and basically said he has no idea why this is happening. He called it possible POTS or Dysautonomia. He recommended Mayo for a consult. In the meantime back to Metoprolol. I am beyond frustrated and have no idea what to do. I also get severe migraines about once a week in addition to extreme fatigue all the time (I had this prior to my first ablation). I’m afraid to exercise at all because I get so winded and it is so uncomfortable to really do anything. I am so sick of hearing it is “not life threatening”. Maybe not but it is “life altering”. I was not like this prior to my first ablation, it was just the occasional episodes and few ER trips. Anyone have any thoughts or suggestions or similar experiences? Any help would be appreciated!
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Boy, can I relate to this thread! I too experience SVT and PVCs a lot, resulting in many visits to the ER over the last 10 years. I've had echocardiograms and heart catheterizations, and I've worn heart monitors, which is misery for me, since I'm horribly allergic to the adhesive on the electrodes. Every time I have an EKG, it's the same thing: The tech doing the test pauses after looking at the reading, consults with the doctor, and then the doctor tells me it's normal, even though the test results say abnormal. When I ask the cardiologist about it, I'm told that the SVT and PVCs are normal and not something to worry about.
Turns out it's not that simple. Looking at the whole collection of symptoms and health problems I've experienced over the years, family history, test results, and medical studies, I believe that I may be suffering from POTS, Ehlers-Danlos, and/or dysautonomia (they're related). My niece has been diagnosed with POTS and EDS. I've been hyper-mobile ("double jointed") since I was a kid, but I didn't know it was a concern. I have tachycardia, as my mother did, but I've been told not to worry about it by various doctors. Dysautotomia could explain many of the other symptoms I've had over the years, all of which have been treated separately (ulcer, diarrhea, breathing problems, GERD, varying heart rate and BP, etc.).
Most doctors don't know a lot about these syndromes/diseases/disorders, which I think is why they've been looking for more common causes. The fact that I suffer from anxiety and depression (both symptoms common to POTS and EDS) has led doctors to see them as the cause rather than the effect. I'm trying to find a doctor who specializes in diagnosing these syndromes. I recently saw a neurologist at Johns Hopkins because of test results that show I have small fiber neuropathy, and I'm hoping he can refer me to someone who can do a tilt table test to see if it's POTS. I'm on so many medications that I'm at a point where I want to know what we're treating before I take on any more symptom-specific drugs.
Bottom line, I can really relate to the frustration everyone has expressed. What we are experiencing is real, and groups like this are so helpful to me when I sink into that pit of self-doubt that is inevitable when one is told over and over "You're fine" or "It's nothing to worry about." I get so tired of having to debate the reality of what's going on with my body, but I'm not going to give up. I'm stubborn that way!
Thanks to everyone for sharing your stories. It makes me feel less alone. Sending hugs and wishes for an accurate and helpful diagnosis for us all.
Here are some links that I have found helpful:
POTS:
https://www.ninds.nih.gov/health-information/disorders/postural-tachycardia-syndrome-pots
Ehlers-Danlos:
https://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/symptoms-causes/syc-20362125
Dysautonomia:
https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
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1 ReactionYour phrase about "not life threatening but life altering" brought me to tears! I have SVT 220-250 about twice a year. Two days ago I got another ambulance ride because I can't get the SVT to convert on my own. The days following my depression and anxiety is so intense that it's hard to function. I call my EP and they say "it's fine". I want to scream "I don't feel fine!" I have had SVT for 11 years about twice a year but treatment has been discouraged due to infrequency.
My experience with VT and my EP has been quite different from yours. I had 2 episodes of 180 beats per minute for 8 seconds each. I have a loop recorder implanted, so it’s not a guess. The doctor recommended a ICD (defibrillator) asap. They made space for me in the surgical calendar within 4 days with Memorial Day weekend during the wait. He said that had the episodes been 16 seconds, we wouldn’t be having the conversation. ( I’d be dead).
Since then, I have had 2 episodes of NSVT for 2 seconds at 140 beats per minute.
I have never fainted and am not aware of these episodes when they are occurring. I was told how lucky I am to have had these warnings so that the ICD can protect me. Many get no warning. It can and does happen, even to fit young athletes. There is no way to accurately predict what might happen. My heart is structurally sound with no blockages. After many tests to determine a reason with none found, they guess that scar tissue within the heart from a virus has changed the normal electrical pathway. Even a cold can do this, let alone COVID.
Please get a second opinion. I don’t understand why your doctor thinks all is well.
My doctor is Francis Marchlinski, very well known within his specialty at Hospital of the University of Pennsylvania. Lots of info on him online. Maybe you could send a copy of your records to him and his team for review. Call and ask. Stay with it; try not to worry. Help is available, with persistence.
Sounds like afib to me . Twice a year my research says you probably won’t get treatment if it that infrequent. Paroxysmal afib is most times not treated . If you have a good EP and cardiologist I assume you have had a complete cardiac work up Stress test maybe nuclear stress, echo Medication are the first line of treatment and new is ablation for first line treatment Be well Peace