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Does anyone live with NSVT? I just had two episodes ( one was 6 beats and one was 11 beats) yesterday caught on my loop recorder and I'm terrified. I'm having a hard time coping for some reason and I don't know what to do.
Yesterday afternoon I was watching tv and out of the blue my vision got blurry, my face got warm, I had this rush come over me and my heart went all irregular. The second time about 30 mins or so later just gave me blurry vision. I actually wasn't expecting it would be NSVT at all since I have issues with atrial tachycardia that have felt similar to this, although I didn't have the vision issues. Back in May of 2019 I did have a recorded episode of NSVT for 14 beats. Up until now that was the only other episode caught on my loop recorder. That May episode apparently looked completely different from these two which originally my EPs nurse thought may have been Afib. The complex's weren't as wide this time and came from a different spot on the apex? It was also missing the P waves. But once the EP saw it he confirmed it was in fact NSVT. Ugh.
So my EP said he wouldn't change my treatments as of now. I take 200mg of toprol xl brand and the doses broken up over the day. I know that's weird but it works for me. He said if I wanted to I could take flecinade but it's only an option as of now. If it gets worse than I won't have a choice. The medication scares me but so doesn't the NSVT. What I guess I don't get is why is this is happening to begin with and if they don't know why it's happening then how can they say oh it all should be ok. How is any type of arrhythmia from the ventricles ever ok!! It feels like I'm playing Russian roullete and they don't care. I had a cardiac mri in May of 2019 which was normal so I know that is helping guide his decision but in my head all I can think of is I have these angry cells and they could go off at any minute. I'm a ticking time **** that could go off.
I have also been dealing with hypothyroidism as of late. My TSH is extremely elevated it's 96.2 and I just started synthroid 25mg last Tuesday. I asked if this could have caused the NSVT but they said no. I have potassium issues as well, I take 20meg of RX potassium four times a day, but that's been stable. I also have other arrhythmias but they are all atrial and he said that didn't trigger them either. I'm just at a lost as to why I have this and why I was so symptomatic especially since they weren't exactly big runs. That's scary. I have spent a lot of years terrified of my heart and now that I have something that could potentially be dangerous I just feel broken. I spent four hours just crying so if this is all over the place I'm sorry. I'm just not in a good space right now.
AHAASAKatie, July 16, 2020 9:34am EST
Good morning, I am so sorry you are having to manage this. And, it is completely OK to not be in a good space right now. We are here to provide you with support, comfort, and information such as our Arrhythmia Tools and Resources. I would also suggest getting a second opinion about hypothyroidism, Synthroid, and medication interactions. Are you working an endocrinologist to treat the hypothyroidism? If not, you might ask your pharmacist, since they work with all of the drugs, and are well versed in medications and odd interactions.
Please know that we are here to help support you as needed. Even if it is just to lean an ear and provide a positive note.
Tiffw28, July 16, 2020 11:04am EST
I do have an endocrinologist she's the one managing the medication and thyroid while my EP is taking care of my heart stuff. Mentally this stuff is traumatic. It's hard to deal with something (the NSVT) that has the potential, even if they feel at the moment I'm low risk, to be so dangerous. I'm not sure mentally how to get around this. I've been crying since yesterday.
Arline3366, July 16, 2020 12:38pm EST
Hi Tiffw28: Since you mention hypothyroidism, I thought I'd write this note. (According to my doctors, hypothyroidism can affect AFib, heart rate, and pounding heart.) I was always very healthy and active, even though I was diagnosed with hypothyroidism when I was 19, and was put on thyroid medication. Years later, I had a partial thyroidectomy due to a cold nodule in my thyroid, but that part grew back, resulting in a later total thyroidectomy when I was 64. Then when I was 81, out of the blue, I had my first of three AFib episodes. It felt like my heart was pounding and I was frightened. The ER doc said my heart rate went to 172. I had two more AFib episodes that same year. On the third hospital stay, a hospitalist (not EP or cardio doc) ran another blood test and found my thyroid to be way out of whack and said he thought that caused my three AFib episodes. Over a period of 1-1/2 years, my thyroid was gradually reduced and now it's 5-1/2 years later and I haven't had another AFib episode; I am very, very thankful. And I am very thankful to the hositalist, also. (Just my experience with AFib and hypothyroidism.) Good luck to you and I hope you feel better very soon!! (By the way, because of slightly high blood pressure, I am on Cardizem 240 and Eliquis 5.)
AHAASAKatie, July 16, 2020 1:17pm EST
Arline3366, thank you so much for sharing your experiences with Afib. While they are different conditions your perspective as a patient is so valued.
Tiffw28 It might be worth a conversation with your pharmacist about your thyroid issues, NSVT, and the drugs. I had a complete thyroidectomy in 2014 and am on a combination of drugs including Synthroid. There have been a few times when the dosage was too high and I had a few issues with palpitations and discomfort. I have also had to manage the thyroid meds, narcotics, Levonox, and then Eliquis at the same time. My pharmacist was a huge help to me in terms of making sure there were no issues will all the medications I was having to take at the same time. It can be very hard to find the right balancing act with medications when you have multiple issues.
Learning to manage the anxiety that surrounds having a serious medical condition is hard, and the reason the Support Network exists. One of our longtime members Jeff Breece wrote this blog a few years ago and it is so very relevant to our conversation today. Jeff Breece – As FDR Said, “There Is Nothing To Fear Except Fear Itself"
Please know that we are always here for you! Best Katie
Tiffw28, July 16, 2020 4:12pm EST
Thank you Arline3366 and Katie for your responses. I nice speaking to others who understand. I have felt very alone and isolated.
Katie, so far all the medications I take can be taken together. Nothing seems to be causing an issue with the other at this point. But I did want to ask you if you were aware of any type of support group that may offer personal therapy for people who deal with Chronic health issues but specifically heart issues. I didn't know if there was maybe a hotline that could point someone in the right direction or an online group etc. I know locally from my own experience most therapists can of course help someone but I would love to find someone who specializes in the field. It's interesting that someone like that is so hard to find.
AHAASAKatie, July 16, 2020 4:43pm EST
We have a relationship with Happy App. You could investigate the app and see if you find it worthwhile. I have not been on it yet.
Happy the App is a platform with trained compassionate listeners who can offer support and encouragement to you, 24/7. For each caller referred by the American Heart Association through May 31, 2021, Happy will donate a free first-time call valued at $24 to the American Heart Association’s Support Network, for a minimum donation of $50,000.
Lots of our members use therapists to help manage these situations. If you want, post your zip code and I can see if the AHA has a relationship with one of the hospitals near you. If you prefer, you can email me at SupportNetwork@heart.org and we can do this offline as well. There might be a way to find a good therapist through that avenue as well.
depotdoug, July 16, 2020 11:13pm EST
Hello Tiffw28, I too had NSVT episodes way before my big smack in my heart, cardiac arrest May 12th 2011. I did not even know what NSVT was until about 3 years after my CA. That's when i really started investigating what and why it was caused, my NS Vtach that is. Yeh my electrolytes Potassium, Magnesium, calcium, sodium and i cant remmeber all of them right now were completely 'out of whack' and my body had been telling me or trying to for two(2) years before my big SCA. I just wasn't listening or did not care or both. I spent 4 days on a respirator intubation tubes of the 12 days total in CICU May 2011. 5 days post arrest i inherited my 1st ICD/pacmaker and I had no, absoutely no idea that i even went to the EP lab and back for ICD/pckmr #1. Now I'm on ICD/pcmkr # 2 tha is 18 months old already.
Tiffw28 Depotdoug(me) has been through three EP doctors, now with my 4th EP. #4 EP knows we quite well from my 9 year AFIB journey. He Dr V i call him just performed my RF Catheter ablation May 6th. Five hours alseep but so so successful, I've been in NSR now 71.5 days. Love every day of it. I seem to thrive on knowledge from this great super heart support network site. Everyone, yes everyone provides necessary understandable personal life struggles through their complicated bodies. Oh by the way my recent cardiologist NP follow-up visit was so fruitful. NP Melissa listened to me, really listened to me, and even knew my cardiac life's history quite well. She gave me my wish and connected my with a new cardiologist specialist that was super proficient in interventional cardiac procedures and Coagulation blood issues. It's amazing to actually ask for a new doctor and get what you want. Keep us updated please.
depotdoug, July 16, 2020 11:17pm EST
One more thing Tiffw28, I used to tag myself as "Fear of Failure" Doug. With this kind of support system here and my church family that has become a past remote thought. Fear of Failure Doug is now E.E.C. Doug. Stands for Excessive Exercise Compulsion. Have a good evening and keep us in you heart journey, I'd sure appreciate it.
Thumper2, July 17, 2020 8:32am EST
Tiffw28, I'd guess that the reason you're having trouble finding personal therapy for your many heart and thryoid issues is that that particular combination is somewhat unusual. OTOH, your EP and endocrinologist should probably be of more help to you in this regard. Like Doug said, he's on his 4th EP and has finally found one that met his needs. Don't be afraid to ask for "second opinions." It's good to do a lot of research on your issues, so you'll have a list of questions to ask your specialists when you see them. For instance, we say here that one does not die from AFib but from stroke that can go with it (which is why one takes blood-thinners). As for where AFib comes from, I don't know anyone on this forum who is sure of the answer to that - - my husband and I both have AFib, and neither of us has any family history of the problem. My husband is in sinus rhythm because he takes Tikosyn; Tikosyn didn't work for me, and I had an unusual procedure involving my heart's His Bundle, which really did work for me. Please keep us posted as to how things are going for you! All the best,
JeffB, July 17, 2020 3:34pm EST
Reaching out when you need it is nothing to be sorry about. It speaks to your own strength and courage, even when you think it failed you, above all else. While I don't have any of the same conditions you do, I do share the anxiety and fear aspects of living post-heart attack. And then even more so while living through a rather eventful year so far here. I find that what helps best is to focus on the immediate vicinity of a 12-hour window. Even if your brain is going haywire about something specific. Planning ahead just a short while can help divert our attention from the immediate problem. That and, over time, it has helped me to sort of recognizing when my anxiety goes into a tailspin while allowing me to react less in the process. Therapy really helped me with that. While I still have a lot of work to do there, I feel functional again.
Leaving you with my best wishes for a better outcome in your future. Be well. Find something to laugh about if you can.