POTS affects between 500,000 and 1,000,00 in the USA alone, according to Dysautonomia International, but isn’t very well known in the medical community. It is more common than Parkinson’s and Multiple Sclerosis- so why has no one heard of it? Some of this is due to that POTS was just recently given the name POTS in 1993. Lack of research and understanding is the largest problem. Research is finally starting to be done, but a lot more needs to happen. Often Veterinarian students will learn about Dysautonomia and medical students hardly gloss over it. A lot of POTS patients many different doctors before they diagnosed. Throughout this process we begin to lose support from your loved ones, support from the medical community, and are told our symptoms are all in my head.
My personal experience with getting diagnosed with POTS was an incredibly lucky one. While working as a receptionist at a hotel I fainted after I had been standing for a few hours. They took me to the hospital to make sure I didn’t have another Pulmonary Embolism and (of course) didn’t figure out what the cause was. They sent me home with a referral for a cardiologist. The cardiologist was useless but did do one great thing: he sent me for a tilt table test.
My first tilt table test was ridiculous. When I told them I was going to faint they ignored me. My heart rate went from up over 60 beats per minute and I passed out. Afterwards, I asked them what that meant and they told me it was normal.
If I had listened to my cardiologist and the technician it would have taken much longer to get a diagnosis. Not everyone faints from POTS, but it was lucky I did because I was able to figure out what I had as a result. I googled “fainting after standing” as one of the hundreds of things I looked into. Between that and looking up “increase in heart rate upon standing” I was able to find that I had POTS. I found a new cardiologist, who wasn’t much better, who was able to definitively diagnose me with POTS. My hyperPOTS diagnosis took a bit longer, but that was a few years later at Mayo Clinic.
I did have trouble with getting diagnosed with my gallbladder problems and Pseudotumor cerebri getting diagnosed. Any rare or complicated condition has the potential for diagnosis these problems.
Just How Long Are We Talking?
To best understand what POTS patients go through in obtaining diagnosis we must look at the length of time and the number of doctors seen before diagnosis. Most POTS patients see 3-5 doctors, but there a few who have had to see 36 or more! That is about a day and a half of doctor’s appointments total; which means a day and a half of doctors telling you nothing is wrong and it is in your head. The amount of money for 36 doctors and a lot of testings is incredibly expensive! It is also emotionally draining.
Source: Data from the patient survey on POTS this wonderful website it doing here.
As for how many years it takes to get diagnosed, for the vast majority of POTS patients it takes over five years! For some patients, it takes as long as 20 years. Twenty years of medical tests, doctors visits, and feeling terrible with no answers.
Based on a Facebook poll of 76 POTS patients.
The Emotional Toll
Often when we first get sick people are very understanding and supportive. They want to help and there is a lot of sympathy. However, after months with no answers that sympathy and understanding goes away. Parents demand you clean and do chores, after all doctors found nothing wrong with you. Friends get upset when you have to cancel due to your symptoms. People stop asking how you are and that support turns quickly into judgement. It is one of the most alienating things I have ever been through.
If your loved ones not being supportive isn’t enough, the medical community begins to “shun” you. Doctors are terrible at saying “I don’t know”. Instead, they blame the patient and insist it is all in their heads. Here is a notable list of things doctors may say:
1. “It is just anxiety” Or insist it is depression, hypochondria, or another mental health condition.
2. “You are doing this yourself.” They assume it is Munchhausen’s or Munchhausen’s by proxy.
3. “You need to stop doing drugs.”
4. “You are making things up to get drugs.”
5. “You just need more exercise.” Or they tell you to be more active, go back to work, get out more.
6. “You are making up all this to get attention.” Oh ya, I love how much attention I get for POTS.Most of it is negative! I hate being that sick girl- who would want this?
7. “That is normal.” Fainting is normal? POTS symptoms aren’t normal and are a huge threat to the quality of life!
Feeling terrible and hearing these things is incredibly draining. After hearing it is all in your head you begin to wonder if they are telling the truth. Friends and faily may even agree with the doctors and begin to say hurtful things when all you need is their support.
How Do We Fix This?
Advocate and Educate! It can be incredibly frustrating to have to educate a doctor, but it is the only way things are going to get better. The more doctors know about POTS, the fewer people will have to endure misdiagnosis. Those of us with a diagnosis need to help those who haven’t yet.