For over half of my life I have been dealing with heart arrythmias that have caused me a great deal of discomfort, dysfunction and despair. As time has gone on more information has become available and different procedures and tests have been created but it seems there is still a lack of knowledge regarding some of the arrythmias that are out there. Not many people understand what it is myself, or someone else with one of these conditions goes through. My story has been told in bits and pieces to various people but I don't know that there is anyone out there that truly comprehends my struggle aside from those who have been there and are struggling as well.
When I hit puberty I had my first episode of supraventricular tachycardia (SVT). After climbing some stairs my heart shot up to a pounding and alarming rate. I got sweaty, shaky, panicked and nauseas. I had not a clue what was going on and of course, the school nurse had no clue either nor did she think to check my heart rate. This same episode occurred a couple more times while out with friends or during a period of playing sports. At this point in time I didn't have a doctor who knew much about this type of thing and there wasn't much information on it so it was brushed aside by my pediatrician. There was even a point where I was told I was having panic attacks and maybe an anti-depressant would help. Luckily I had competent parents who weren't about to put their child on such a strong medication when she obviously wasn't having depression or anxiety issues. I went on with life this way having an episode maybe every six months or so, lasting about an hour at a time before stopping. I went through college feeling pretty decent. I had minimal episodes and I attributed this to being in really good shape, being very busy and taking care of myself.
I graduated college as an engaged woman and began to see my future spreading out in front of me. My episodes were a constant worry in my mind but I had them so infrequently that I didn't let them control me too much. Shortly after I was married at the age of 23, my SVT occurrences began to pick up in frequency. Not only that but I was having a large degree of palpitations and my heart rate in general seemed to pound quickly all the time without exertion. Of course, emergency room doctors just looked ever so puzzled and I can't tell you how many times I was told I was having a panic attack and offered some form of anxiety medication. Mind you, I know anxiety, I know it's no joke but what I did know is that this wasn't a panic attack.
At this time I switched to a new primary care physician. I explained all these facts to him and after listening to my heart he said he heard something irregular. He got me in to see an electrophysiologist in the area who told me it sounded like my episodes were of the SVT nature. The only way to be sure would be to catch it in the ER which often proved difficult because I could never make it there in time. The other option was to do an Electrophysiology Study where I would be sedated at the electrical system in my heart would be mapped and it would be determined if I had an accessory pathway that was causing an arrhythmia. I was young and scared so I decided I wasn't ready for this yet due to the risks of the procedure (Stroke, clot, bleeding, death). I decided I wasn't going to let these episodes control me.
Shortly before our first wedding anniversary my husband and I decided to bring a baby into the mix. I had done my reading and knew my SVT could get better with pregnancy or it could get worse. I should have known with my luck it wasn't going to get better. I made it to week 18 of my pregnancy before becoming tired and scared of the episodes and it was at that point I went on a beta blocker (atenolol) to control my heart's activity. While I did manage to avoid any other SVT episodes for the rest of my pregnancy I wound up with pregnancy induced hypertension, bed rest for the last two months and then toxemia. My son was born beautiful and healthy and everything was worth it.
Unfortunately when my son was about one year old my heart issues began to flare up like never before. I was having palpitations constantly, SVT constantly despite still being on the beta blocker and my heart rate was always high. I spoke with my cardiologist again and we set the date for my first EP study and possible ablation. During the procedure it was determined I had AVNRT SVT as well as inappropriate sinus tachycardia. The SVT was ablated while the IST was here to stay as they no longer ablate the sinus node due to the great risk of pacemaker. For two years I was SVT free. I dealt with inappropriate sinus tachycardia in the form of high heart rate, shortness of breath and extreme adrenaline surges that caused me panic attacks. I chose to not be on medication at this point and dealt with my condition with almost obsessive working out at the gym, vitamin supplements, herbal products and a nutritional diet. The IST became manageable and I was blessed to be able to run around after my son and be a participant in all the play and craziness he brought to our lives. My heart rate never really shot up to a high level though the other symptoms were an issue.
After two years my SVT came back and I went in for another ablation. This one was also successful and I was told the IST was still an issue and I would have to go through some other tests to see if my thyroid was an issue. Everything else checked out. I stayed medication free for the next year, using a rigorous yoga and meditation practice to control my symptoms along with diet and supplements.
After just one year I had an episode of what seemed like a mild form of my SVT. I was completely crushed and discouraged. I went to see my cardiologist who either was having a bad day or just didn't care to help anymore and I walked out of the office with no game plan. Nothing. He refused to do an EP study on me and didn't care to humor the option of my SVT returning a third time (Which can indeed happen). After making a number of phone calls I found a new electrophysiologist and went to see him within a couple of weeks. For a total of six weeks I wore an event monitor that would take data of any episodes I had and would help my new doctor diagnose what was going on. Meanwhile I was scheduled for my third EP study, this time with my new doctor who assured me that he would ablate if he could but not at the risk of a pacemaker. He didn't feel that quality of life would outweigh SVT or IST.
I had been taking beta blockers for about a month and needed to go off of them for my procedure. That was hell. I wound up in the ER twice with a completely off the wall irregular heart rate, I couldn't breathe and I was in a complete panic over all of it. I made it to my EP study, only God knows how. My EP study determined my ablated pathway was still intact. The episodes I was feeling was very angry IST that had decided to flare up and start causing some new issues. I was having skipped beats, extra beats, surges of adrenaline and spikes in heart rate. My doctor also felt that while I was not experiencing traditional anxiety, my nervous system was malfunctioning with each abnormality of heart rate. That is where the breathing and other issues were coming in. I was put on my beta blocker to control my heart rate and was asked to go on clonazapam for four weeks to help stabilize my nervous system. I'm one week past my study and while my symptoms have improved some with the used of medication this is not a life I will accept right now.
My dose of clonazapam has lowered by one quarter so far. I refuse addiction or dependence at this point in my life. I take my beta blocker each morning and will do so until I can regain control to a certain degree and then I will attempt a taper. I will see my doctor in about 2 ½ more weeks and at that point he has told me he will be ready for me with some non-pharmacological options. God bless that man. Yesterday I went to the gym for the first time in three months- since this all reared it's ugly head. It was my goal to walk on the treadmill for ten minutes, no matter how slow I needed to go to do it. I hit ten minutes and I pushed myself to fifteen. I have had relapses before and luckily know very well how to pull back, start again and retrain my body and my heart to function better. I have begun to do very gentle ten minute yoga sessions at home and have been doing so for about 4 days now. I will begin a meditation challenge just a couple of days after my 30th birthday next week. This will be my third challenge and I know the positive benefits it will bring.
I appreciate and admire the positive outlook my cardiologist has. He has told me if I'm one of the lucky ones maybe my heart will rewire itself properly in a few years (It can happen) or it will go into a remission. He's told me I can run a marathon if I want to- it just takes some work to get there. I am thankful for this past year where I was able to learn the practice of yoga, the principles of yoga, develop my spirituality and understand the power of meditation. I wish I could say each day feels that positive to me right now. I have my moments where I say I won't let this define me and there's other times when all it does it sideline me and define me as I struggle to breathe and head to the medicine cabinet for an extra dose of medication. I know these up's and down's well. I am thankful for the son I have since I know if I decide to try for one more child it will be the battle of a lifetime. I am thankful I have a name for my conditions so I haven't had to be labeled with anxiety to this day. I am thankful I can wake up each day and though every single morning is a challenge and a test I will fight through it, clawing my way as close to the top as I can physically get.
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