Hello everyone,
I hope that it's ok for me to post here. I do not have a diagnosis of POTS but I have one medical professional in my care team that has brought up the possibility. I would like to share my story and hopefully get some ideas on how to get my Doctors to consider the possibility and test for thos condition.
I had a baby last summer at the age of 34. For the most part I felt ok after having the baby. But 3 months postpartum I started to have issues with blood pressure rising. I also recall of having problems with periods of time of feeling so unwell that I would have extreme episodes of tremors like I was feverish. I cannot recall much more in terms of symptoms but I did seek help for the high blood pressure issues. Doctors seemed to think I was having high stress and that was the cause.
4 months later, I started to have issues with high heart rate (130's) followed by extreme dizziness, fatigue, and nausea. I thought I was having a heart attack, went to the ER and checked out fine. This first episode also happened a couple of weeks after having some sort of mystery viral illness that no one could figure out.
I started to have more frequent episodes of heart racing, extreme fatigue, nausea, shortness of breathe, blurry vision and many other symptoms that would last for hours. Since January of this year I have been to the ER 6 times, two of those by ambulance and hospitalized once. By the time I get there I have been dealing with the symptoms for 3 or 4 hours straight. Of course, when I get there and they have me lay down for about an hour, everything calms down and then they say its panic attacks or anxiety.
I am seeing a cardiologist now and so far they have down blood work and echocardiogram while I was in the hospital. I will be getting a stress test and MRI in June. Cardiologist says it can be a form of SVT. I am waiting on a 14 holter monitor to come back with the results in a week or two.
So, other the last few months, these episodes have been more frequent and seem to be triggered more consistently. Simply getting out of bed will make my heart rate go up to anywhere from 110 to 150. The reason I have been seriously wondering about POTS is because I have also noticed that my episodes will trigger after a large meal. I told my doctor this and he said that food and heart issues aren't related. Also, I am having internal tremors all the time now, especially when I'm sitting or lying down.
The more I research it, the more it matches up with these weird symptoms. All the doctors have said panic attacks and anxiety are the cause for it but the anxiety meds don't help and they definitely don't stop the heart racing.
The cardiologist has started me on a beta blocker and that has made some improvement. But I still feel fatigued no matter how much I sleep, dizzy when I stand, and constantly need to sit down and take a break and catch my breath.
Whatever this is, if it isn't POTS, it's something that is mimicking it I think... Or closely related. I know I have stumped the doctors so far, so anxiety is the go to diagnosis right now. How would I go about mentioning this condition in Hope's that they would at least explore it? I have a PCP and Cardiologist right now, is a neurologist a better choice? Can POTS start out mild and then get more pronounced as months go by?
I just ready to have an answer on what I've been dealing with for 6 months and not have people think I'm crazy. I have been told to seek treatment at a mental hospital because friends and family think it's all in my head.
Thanks for any insight. And I know that medical advice is not allowed. I fully intend on following through with all the doctors involved in my care. I'm just trying to educate myself on the condition.