Welcome back! Thank you all for reading my first two posts and providing comments, advice, encouragement, and more. You are all amazing and I’m thankful to have so many wonderful people interested in following my journey. For this post, I’ve decided to talk about postural orthostatic tachycardia syndrome (POTS) but I’m going to combine it with my post on gastroparesis (GP) as well. The medical field still isn’t exactly sure what causes either of these health issues but they do believe that there is a connection between POTS and GP. So I’ll explain what they both are and then I’ll personalize it by talking about my experience of living with both illnesses.
Postural orthostatic tachycardia syndrome or as I’ll be referring to it in this post POTS is a syndrome that occurs when the autonomic nervous system (ANS) malfunctions. Our ANS is responsible for all of the functions that occur naturally, things we don’t consciously have to think of such as: breathing, blood pressure, heart rate, digestion and so much more. So with POTS, the ANS does not regulate your heart rate with positional changes the way it should. “The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing, in the absence of orthostatic hypotension (low blood pressure). In children and adolescents, a revised standard of a 40 bpm or more increase has recently been adopted.”1 Along with tachycardia, there are many other symptoms of POTS that patients suffer from. Symptoms such as: “small fibre neuropathy that impacts sudomotor nerves, fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremities, chest pain and shortness of breath. Patients can develop a reddish purple colour in the legs upon standing, believed to be caused by blood pooling or poor circulation. The colour change subsides upon returning to a reclined position.”2
Now, what is my personal experience with POTS? Well, about a year and a half ago, I approached my PCP and explained that I was having issues with severe dizziness, shortness of breath, nausea, and pre-syncope (near fainting) episodes. I questioned if my blood pressure was maybe dropping so we decided to start having me keep track of my blood pressure at home for two weeks and then we would evaluate the results from there. Every morning when I woke up, I would check my blood pressure and heart rate while still laying in bed and it was always great. My average resting heart rate is around 55-60 bpm and my blood pressure was always within normal range. Next, I would stand up from bed and test again. Generally my blood pressure would remain around the same with a very tiny increase but my heart rate was anywhere from 120-170 bpm. So after about a week of doing this I knew something was up but I didn’t know what exactly. I completed my second week of monitoring and I scheduled a follow up with my PCP.
Before my appointment I scoured medical resources trying to find an explanation for such a dramatic increase in my heart rate (the average person’s heart rate should only increase by about 10 bpm upon standing). That’s when I came across so much information on this issue called POTS. I read everything I could and found as much research, data and studies as possible. When I went back to my PCP I showed her my blood pressure and heart rate data but I didn’t mention anything else at that point. She reviewed it, looked at me and said “well, Lyndsay I think you may have what we call postural orthostatic tachycardia syndrome.” Again, let me take this moment to say how awesome my PCP is, she recognized the issue within minutes and was aware of what it was, what diagnostic testing is needed and treatment options available! From there I was added to the wait list at Hamilton General for the tilt table test and an appointment with one of the few autonomic specialists in the country. Then I waited, and waited, and waited…and then waited some more. As it turns out, the wait list can actually mean a year or more before you receive an appointment. Now imagine having all of the above symptoms, being home alone a lot of the time and frequently having pre-syncopal episodes. I was getting scared!
Thankfully, a wonderful family member has some great contacts within the medical community due to the guys he plays hockey with and by February 2016, I had an appointment with a cardiologist downtown at St. Michael’s Hospital. The doctor that I saw there agreed that the specialist in Hamilton was definitely where I needed to go but in the meantime, he did what they call a “poor mans” tilt table (basically you just have your blood pressure taken lying down, sitting up and then standing up) from there the cardiologist confirmed the POTS and agreed to start treatment! What a relief, ok so what’s the treatment?? Of course, there is no standard treatment or a one size fits all treatment for POTS patients, it’s kind of a guessing game of what will work. First is fluid, lots of fluid, 3-4 L of fluid, the second is salt, lots of salt, 10-12 G of salt and the third is recumbent exercise. Then there are pharmaceutical options as well and I was started on Florinef, a medication that works by helping your body retain the salt and fluid. So, off I went feeling pretty damned pleased that at least I had some awesome doctors trying to help me.
Fast forward to May 2016, I am sick, so sick. I had been having gastrointestinal issues for months, I was not getting fluids in, I was dehydrated, and I was suffering with constant tachycardia so off to the ER I went on the Friday before the May long weekend. At the triage desk I did my best to describe what was happening and to explain my weird health problems to the triage nurse. She was pretty good at listening but what I said really didn’t matter anyways because when she did my vitals my blood pressure was 196/108 and my heart rate was 130. I was registered, put in a room, had blood work drawn, and an IV inserted within 15 minutes of my arrival. I was given IV fluids, IV medications and then I was admitted to the medicine unit. During my admission (which lasted for a full week) it was discovered that the Florinef was causing me to have severe hypertension (high blood pressure) so I was taken off of that medication. Then they consulted the GI specialist over the other issues so he scheduled me to the OR for an endoscopy and colonoscopy. Once those two tests were completed, it was found that I had inflammatory bowel disease (IBD) and a concern that the GI specialist brought up was that even though I had not been allowed anything to eat or drink prior to the scope, when the endoscopy was completed there was still a lot of fluid in my stomach that should not have been there. I was prescribed medication for the IBD and finally discharged home with instructions to follow up with my PCP.
At my follow up appointment, we discussed the POTS and not being on any medication at all. We decided to try for a few months to just manage it with fluid and salt, since I was seeing my cardiologist again by September. Spoiler Alert: it didn’t work, and I was a hot mess express for months. Finally once September rolled around my Mom and I made the drive to St. Michael’s again. I told the cardiologist all that had happened and that I had tried to forgo medication and it wasn’t working at all. So he agreed that we could move on and try beta blockers. He recommended that my new internist I was being followed by prescribe them for me as that way he could provide follow up care to me much closer to home. My cardiologist also told me that day that I was on the right track, I was exceptionally organized and well versed in my conditions and he told me to keep it up, it wouldn’t be much longer until I was off to see the specialist in Hamilton (or so we hoped). He promised that if I hadn’t gotten an appointment or at least a call by October 2016 he would step in for me.
So I came back home, saw my internist (the genius) and was prescribed a beta blocker. A quick overview, beta blockers actually block a hormone called epinephrine, also known as, adrenaline. So when you take beta blockers, your heart will beat slower, this will also help to reduce blood pressure. My beta blocker is called propranolol and let me tell you, it’s a miracle. I noticed the differences pretty early on; just the reduction in extreme fatigue from having such a high heart rate all the time was incredible.
About a month after my appointment with my cardiologist, I got the call, I had an appointment with the autonomic specialist in Hamilton and I was scheduled to have my official tilt table test (TTT) done! At the end of November 2016, my Mom and I drove down to Hamilton General. I was miserable because for three days prior to the TTT I had to stop my beta blocker so they could collect accurate results. I was averaging a heart rate of around 160-170 bpm when upright all three days. I was exhausted, dizzy, nauseous, nervous, etc. We arrived early, got registered, completed my ECG and headed to the autonomic lab. That’s when the Nurse comes to get you and you’re taken into a small room with a bunch of monitors and a flat table/bed. They insert an IV, strap you to the table, attach you to the monitors and blood pressure machines and get you warm and comfortable. The first part of the test is easy, you lay there and just let them watch your heart rate and take their measurements, blood work, etc. Then comes the hard part, the second half of the test, you are upright for 30-40 minutes unless you pass out or almost pass out (that’s what the straps are for, so the patient doesn’t pass out and hit the floor). So they give you the heads up (no pun intended) and they raise the table to about 800 and continue monitoring your heart rate and doing blood work at certain intervals. I lasted 15 minutes, the entire time I was raised up my heart rate never went below 130 bpm and by 15 minutes I told them that I was starting to get the pre-syncopal symptoms and felt like I was about to black out. They brought me back to the flat position, did a few more quick, tests (one that involved injecting a drug into my IV line that caused my heart to race) and then they started a fluid bolus (lots of IV fluid at a high drip rate). Once you’re feeling better, they get you back up and you are free to go home. They advise you to take it easy for a few days after the test, increase your fluids and resume taking your beta blocker as usual.
So even though back in February 2016 I was diagnosed and started treatment, it wasn’t until the end of November 2016 that they officially diagnosed my POTS. Nothing changed because my medications were working; the only difference was the autonomic specialist referred me for cardiac rehab. Exercise is extremely important for POTS patients, exercising in a sitting or lying position is extremely important for POTS patients but I will be talking more about cardiac rehab later on.
Alright, so now we have POTS but remember when I was in the hospital and was diagnosed with inflammatory bowel disease (IBD)? Well that was still an ongoing issue, as well as, the mystery of why my stomach was full of fluid during my endoscopy. That’s where all my gastrointestinal diagnoses start to come forward. I’m going to end this post here, as it was a lot more then I expected, I will still post the second part about gastroparesis this week (hopefully tomorrow). I will give all you awesome readers a break first!
Wishing You All Health & Happiness,
Dysautonomia International. Postural orthostatic tachycardia syndrome: diagnostic criteria. Retrieved from http://www.dysautonomiainternational.org/page.php?ID=30
Dysautonomia International. Postural orthostatic tachycardia syndrome: signs and symptoms. Retrieved from http://www.dysautonomiainternational.org/page.php?ID=30