Kristina: Incorrect diagnosis of PoTS
I am Kristina, I am 28 years old and this is my story of my struggle with PoTS. Going from my highest to my lowest within the space of a few months.
I worked as a manager of a ladies fitness boutique that turned into a fitness studio by night. Fashion and fitness; my two favourite things! My job kept me very busy, both physically and mentally, but I loved it.
I have always been interested in fitness, but with my wedding day looming I cranked it up a notch. I was running once a week, doing Zumba twice a week and doing a boot camp style class, plus squats and lunges between customers at the shop. More to the point, I was really enjoying it and was buzzing with endorphins and excitement for my upcoming wedding.
It was around this time that I had my first “funny turn”. I went dizzy, I had shortness of breath and my heart felt like it was fluttering. This lasted for a couple of minutes then it went away and I felt completely fine afterwards. I put this down to exhaustion and ignored it.
My wedding and honeymoon came and went and before I knew it I was back at work and started a gentler fitness regime. My “funny turns” continued to happen about once or twice per month, but again, I just put them down to exhaustion and ignored them.Married life was going great and my husband and I were making plans for our future. One of my plans was to train as a Zumba instructor. Zumba is something that I had been doing for about 2 years through my job and I absolutely loved it. I was so excited about this and had plans to go on the course as soon as the busy Christmas and New Year period passed.
Over Christmas the shop was so busy that my fitness took a back seat for a couple of weeks. My funny turns became more frequent and then they became daily. I thought this was strange given my decrease in exercise, but again, I ignored them until the 27th December. I had just finished a day in work and I was driving home on the motorway. Without warning my worst ever funny turn hit me. I was gasping for air, I went very dizzy, I could feel my heart thumping incredibly hard in my chest, I felt sick, I was trembling, my legs went to jelly and I got pins and needles in my cheeks and scalp. I felt like I was going to pass out. I managed to pull over onto the hard shoulder and wait for this thing to pass. This is what it took to wake me up and make me get my back side to the doctors.
My GP referred me for testing straight away starting with blood tests and an ECG. The ECG showed that my heart rate was abnormally fast but they did not know why. I was then referred to see a cardiologist. I continued to do my job but kept my exercise to a minimum (by my standards) while I waited for my first cardiologist appointment.
I woke up one Sunday morning in January. I was in a pool of sweat and was burning up despite it being a chilly morning, and I had a headache. I got out of bed and as soon as I stood upright I went deaf and I had a high pitched ringing sound in my ear. I slowly walked towards the bathroom and gradually I started struggling to breathe, my heart started pounding harder and harder to the point where it was painful and I got dizzier and dizzier. I just made it to the bathroom in time to look in the mirror and watch my vision grey out. I felt myself hit the bathroom floor. I couldn’t hear or see anything but I could feel. My chest was tight and painful, I could not breathe properly and I experienced the worst migraine pain in my life. Eventually I was sick and I instantly started to feel better after that, and my senses gradually came back.
I climbed back in bed to try and recover. About 10 minutes later exactly the same thing happened again. Then another 10 minutes and it happened again, and then again. By this point it was clear that something was seriously wrong and my husband called me an ambulance.
The same pattern continued while we waited for the paramedics, the journey to the hospital and in the hospital. This went on for hours and I had had a total of twelve ‘attacks’, one after the other. When they eventually stopped I felt as though I had been kicked in the chest and I was so exhausted and drained. I was kept in overnight, had numerous blood tests, ECG’s and was connected to a heart monitor all night. I was discharged the next day with a diagnosis of SVT and was told my condition can be fixed with a procedure called catheter ablation.
From that point I did not return to normal or semi normal. I could not stand for more than a few seconds without my heart rate shooting above 120 and feeling dizzy and breathless with severe chest pain. Walking is a huge challenge, so exercise felt impossible. If I do any walking at all I can suffer for hours after even when I am lying down. My recovery time can be as long as two days. Hours after minimal exertion I suffer from bradycardia attacks and episodes of irregular heartbeat. I feel a constant tight pain across my chest and I have periods of severe trembling (not from being cold).
I was off work from this point and I was relaxing at home waiting to have the catheter ablation done. Three weeks later I woke up in a pool of sweat and I just knew that as soon as I stand up the same thing is going to happen again. I was right. The same pattern continued over and over and resulted in another night in hospital, more bloods being taken and more ECG’s. The next day I was discharged and another doctor confirmed the SVT diagnosis.
More waiting……………… I went into the hospital for a check-up appointment with a cardiologist. He looked through my ECG recordings and heart monitoring and I explained in detail what I had been experiencing over the last few months. The cardiologist decided that he did not think I had SVT after all, but instead he thought I had a condition called PoTS. I found this very hard to hear because as far as I was aware I had a condition that is fairly easy to fix and was now being told I may have an incurable chronic illness. I started to panic about the prospect of not being able to go back to my old life style and the active job that I loved. My plans to become a Zumba teacher were in jeopardy, so this news hit me really hard.
A few weeks later my worst nightmare was confirmed with a tilt table test and I really did feel like I hit rock bottom. I was miserable! I spent the best part of a year indoors. I didn’t want to see anyone apart from my immediate family and I just felt ill every single day. What made matters worse, my body started to change. I lost muscle tone first and then I put on a few pounds. My worst nightmare.
A few months have now passed since my diagnosis and things are better in a number of ways. After trying numerous drugs I have found one that gives me some relief that I can tolerate. I am taking Ivabradine 7.5mg twice daily and they have taken the edge off my symptoms. I can walk (slowly) for a few minutes now before I need to sit down, and I have invested in a wheelchair which I use when a longer walk is required. This has really helped me get some of my freedom back and I feel happier as a result.
My husband and family have been a great support for me emotionally. They have really focused in arranging activities for me that I can do. My parents took me on a weekend boat trip so I was able to enjoy the scenery and catch some sun. My husband takes me out to the cinema a lot and out to nice dinners. I have enjoyed shopping trips with my sister and had visits from good friends.
I was able to come to terms with my condition and learn to live with it. I try to focus on the positives and focus on doing the few things I can do.
I have taken up some exercise again. I find cardio exercise impossible so no running or Zumba, but I can do things like crunches, leg lifts, weights, anything that can be done sat or lay down.
I continue to see my cardiologist monthly. I have become a human guinea pig experimenting with different drugs and dosage. I hope one day a cure will be found but until then I try to remain positive and focus on the things I can do. I have learned that I was making myself feel worse by letting things get to me. Your attitude can make a huge difference to how you feel, and with the help from my family and friends, I was able to accept my condition and continue living my life as best I can despite my PoTS.
Update: My health began to deteriorate further. My attacks were happening more frequently and more severely, with a new record of 35 attacks in one day. I was in agony everyday and looking more and more like a member of the Addams family. I was convinced there was more to my illness than my diagnosis. I did hours and hours of extra research on Pots and tried to figure out what was going on.
Months prior I read about Hyperadrenergic Pots and thought the symptoms were especially similar to mine. My doctor at the time did not see the point in testing my adrenaline levels upon my request, but I was sure it was important to investigate this. I decided to buy a blood pressure machine. I took my blood pressure at various times of the day; standing and sitting and made notes for each recording. It became clear quite soon that something was very wrong. I managed to take a number of blood pressure readings during an attack. The attacks I was having at least 5 times per day by this point.
My blood pressure was spiking to extremely high levels during these attacks. Over 200 Systolic every time. No wonder my head felt like it was going to explode!
After showing my findings to my doctor he immediately arranged for my adrenaline levels to be tested and he sent me for an MRI scan of my abdomen. It turned out that after all that time of trying different drugs that didn't help, it was because my Pots diagnosis was wrong. I had a large tumor of my adrenal gland called Phaeochromocytoma.
I was then referred to see an Endocrine surgeon and had an adrenalectomy to remove the tumor.
There were some complications and I spent 6 weeks in hospital with 5 days in intensive care but despite having an extremely rough, scary and painful few months I am now out the other side. I am feeling really well; no more attacks, no more black outs, dizziness, palpitations, shaking, pale complexion........ they have all gone. I am gradually building my strength up and putting my life back on track.
I thought it was important that I update you all on my health as it shows how important it is that doctors test you properly. My Pots diagnosis was confirmed after a tilt test but other problems can give the same result. Don't be afraid to push your doctors if you feel the need. It's your body so you know best!