Lissa1707

Hi everyone, It's been years since I have posted. I was diagnosed with POTS 5 years ago after a mycoplasma infection and was able to reach a place of function after the first year and a half with diet change (paleo) and midodrine and mestinon. The past year I have been in a flare with new symptoms after receiving the flu shot. It seems I'm having more general autonomic dysfunction than POTS. I passed out at home Saturday for the first time in a long time and I'm just at a loss of what to do anymore. Over the past year I have really struggled with GI symptoms. I've lost 8 pounds over the past month (down to 97 pounds) and can barely eat anything (I feel full, nauseated, bloated). I'm getting a gastric emptying study done today for possible gastroparesis. I feel like I have seen every specialist possible in the last 5 years. I am so scared that I won't be able to continue working and of what else this awful disease is going to take from me. Anything we try (med wise) just makes things worse. I switched from Luvox to lexapro about two months ago and I'm worried it may be contributing to this flare which is so disappointing because it has helped in so many other ways. I am just exhausted with doctors appointments, tests and treatments that don't work. I made an appointment with a naturopath next week in an attempt to come at things from a new approach. I also have autoimmune disease and hashimotos and questionable lyme. I'm 29 and married to a great husband. We don't have any children. I just feel so down. I have always had a plan or an idea of what's going on but I am just at a loss. Sorry if this post is negative--I just really need to vent to people who understand. My electrophysiologist wants me to try florinef but I really do not want to be on it. Thanks for reading, Lisa

Sam1, Can you tell me more about this device? I have an underlying arrhythmia and have done 30 day holters multiple times but haven't caught it on the monitor. We assume SVT based on symptoms but this seems like a great product especially to capture what the rhythm looks like she symptomatic. Do you have to wear electrodes? Also Spring--I too have the bounding heart rate without tachycardia sometimes. Mine worsens when I'm hypoglycemic or if I have just eaten but there's never a correlation to my BP or heart rate. Hormone cycle also affects mine very uncomfortable when it is occurring-I would rather be tachy -Lisa

Thank you all so much for the support and encouragement. I can't tell you how much it means to me to have found others who understand

Thank you both so much for the encouragement. I can't tell you how much I needed it Katie-the physician roller coaster has been the hardest on me. Getting my hopes up just to be let down again and again. If we decide to seek out another physician I think our next step would be Cleveland clinic or Vanderbilt. No one is impressive here in my state for knowledge base on POTS and I also have that gut feeling that someone is just missing something. Angie--I used to journal a long time ago and may need to revisit that. Nature brings me a lot of peace too! It's so hard down here because the heat is so bad but when I can sneak some time on a good weather day I try to at least sit outside.

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. -Lisa POTS, hashimotos hypothyroid