Hi everyone. My name is Lisa. I am 26. I was diagnosed with POTS in September of 2013. Like many of you I am sure you have told your story so many times that it is literally exhausting when it's time to see the next new doctor because you have to go through all of it again but I have finally reached the point where I need support from my fellow potsies. So here's my story. In August of 2013, I went into an arrhythmia while at work. I am an ER nurse and based on my symptoms we all thought it was SVT. I had struggled with resting tachycardia before starting at 19 and since I went back into a normal rhythm on my own we didn't think much of it. Three days later I went into the arrhythmia while I was driving and had to pull over and call 911. My life has never been the same since that day. In what I call my acute phase I was very symptomatic: passing out, light headed, dizzy, tachycardic, hypoglycemic--I could barely stand. We didn't know what was going on or why this was happening. We thought it was from the meds they were trying to treat the SVT with--boy were we wrong. I had been hospitalized previously that March for mycoplasma pneumonia (most likely my pots cause) and had never really fully gained my stamina back so my established cardio doctor was trying to treat me for the "SVT". Luckily he referred me immediately to a cardio electrophysiologist who diagnosed me with POTS on my first visit. My symptoms were so significant a tilt test wasn't even needed. My cardio tells me I am the second worst case he has seen for autonomic dysfunction but I have learned I am very lucky as I have learned about the dysautonomia community. I know now how lucky I am to have been diagnosed so quickly--I've read how so many people wait years. But when I got POTS everything else was going wrong too. I also have hashimotos hypothyroidism (since 12)--I was in full flare and I went from an on the clock harmless cycle to erratic menstrual cycles and severe adult onset acne. Those first few months were so difficult as we searched out other possible exacerbating illnesses with continued failure to get answers from physicians who just had no clue and didn't want to listen. I had lost hope in the very community I served in. What happened to caring and compassionate doctors? My career revolved around serving others at their worst and I could barely find one physician to show me compassion. I am grateful that my cardioelectrophysiologist was up to date and after many medication fails I ended up on midodrine and mestinon and I was sent to PT for reconditioning. After thirty days of that I still wasn't getting better. It wasn't until my PT recommended I try following a paleo diet for 30 days. It finally worked in that with this diet, my medications and compression socks I was finally able to do basic daily functions. But it's been a vicious cycle. I will never forget the day my cardioelectrophysiologist walked out of the exam room when I started crying because he said there was nothing else he could do for me and this was my life and we would have to adapt. I don't remember what a good day is anymore or how to answer how are you feeling? It's either bad or less bad. My condition waxes and wanes like many of you and I've had to make adjustments. I took a management position in my ER because my body could not do 12 hour shifts anymore. We have been told recently that I will most likely not be able to carry a pregnancy safely. I got a new PCP recently who is a functional medicine doctor and her PA is great--we started new treatment for hormone imbalance. My husband is always saying he's willing to do whatever and go wherever for us to get answers. We don't know when we should accept that this is our new life or if there is hope that someone is missing something else or there is a physician out there who can help me. Most recently I started having the GI issues that some potsies have and had an EGD yesterday. As you can imagine I'm worn down from the sedation and frustrated that I can't just bounce back. My faith has been the only thing keeping me grounded and I try to focus on what I can do instead of what I can't and I know others have it much worse than me. I'm just frustrated and exhausted and I feel like my choices have been taken from me. I struggle in what purpose God has for my life--what can he do with me when I can barely get through the work day and make it to my sofa? I feel guilty that I won't be able to give my husband a biological child. It's just been hard and today is a hard day. I am grateful to have a great husband and Mom and I am grateful to this forum that I was able to get some direction from some people's posts who had EGDs done with POTS. If you've made it to the end of this thank you for taking the time to read my story.
POTS, hashimotos hypothyroid