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Helping Someone Navigate a POTS Diagnosis

It can be overwhelming when a patient begins their search for help. We started out unprepared for sure. Our first doctor appointment was with an on-call general care physician because our regular doctor was on vacation. I naively thought a couple of visits would be enough to have it all figured out when the lightheadedness and dizziness started affecting swim practices. After a summer of eye doctors, ear doctors, cardiologists, and a not so helpful neurologist, I realized we were going to have to approach things differently and more actively push for finding answers.

I recently had lunch with a newly diagnosed relative - someone who is only 21. She is new to the dysautonomia diagnosis and the POTS world - although there have been symptoms for many years. She is someone different than the Mom's I have talked to that already have experience dealing with doctors in their own lives. Several months earlier I bombarded her with link after link to articles and blogs and "helpful" information. Something I once couldn't get enough of. But a place she isn't at yet. I tried to explain everything at once even though I know it is truly overwhelming! It dawned on me during our lunch after hearing some of her questions - that some patients, especially those who are young and inexperienced in dealing with doctors on their own - need help in knowing what questions to ask, how to follow up and, in effect, advocate for themselves in a way that doesn't allow them to slip through the cracks. It complicates things further when POTS is a complicated nervous system disorder that many MANY doctors know little to nothing about. This is true even though POTS is not rare!

I suggested she get a notebook where she can make notes of all of her symptoms. Start a history and add to it as she thinks of things. Write down all the questions she wants to ask and keep adding to the list. Have a place to take notes at each doctor visit labeled by doctor and date. I told her to get results of all of her blood tests, EKG's and any other tests. Keep them in a folder for reference. Write down all the medications she has tried and how each affected her. And read! Read patient blogs. Read articles. Learn about the typical symptoms - which I wrongly assumed she had already done. She has to be her own advocate. She has to take charge. Ask questions - lots of questions! Often young people, especially those who are quiet and polite, don't like to be a bother. And more importantly, when doctors you have already seen make you feel like it is all in your head and that there is nothing wrong with you except anxiety, you are left feeling helpless. They feel defeated and don't know where to turn.

In addition to a notebook, I also have a calendar where I write daily notes to myself. Even if it seems minimal, I write it down. Every appointment. The day we start a new prescription. Day we end a prescription. New symptoms. Someday I might need to go back a year and piece together clues that could be meaningful. I have used this more than once - it helped us figure out how important l-methylfolate (link to previous post) was to her body.

I think when a patient is first diagnosed there is this false sense of relief that washes over them and for a brief time they are elated - almost giddy with relief. But then reality hits. There is no cure and the medications available often only help minimally. And finding the right medication and dosage can seem like finding a needle in a haystack. Then the lost and hopeless feeling takes over again - maybe more than before. I have felt that feeling many times. Finding others to make up a good support system is so important. And reading about other patients with similar experiences can help - The Mighty is a source we sometimes use.

I remember the first time I saw the words POTS - actually I saw the word POTSIE. A cardiologist we saw suggested Meg drink more water and add salt tablets. I went to Amazon and began reading reviews of salt tablets. One woman had posted that they worked great for her POTSIE daughter who had a neurological syndrome. I remember thinking that's not us. Meg just needed more salt. But the more you read the more you learn (but not forgetting our post on Wild Goose Chases - and being mindful of who the source is).

Meg's symptoms started in 2013 - four years of finding our new normal. Our experience has been to seek out specialists from the beginning. Seeing local doctors who don't have a working knowledge of POTS is often going to be a frustrating experience. Most of the best specialists around the country have extremely long waiting lists. Get your name on the list immediately as you begin your search for other options. A year can easily go by without finding the right answers and you might be glad to now have the chance to see the doctor who seemed impossible to see. Our blog post Misdiagnosis & Patient Advocates can help you find doctors and other resources. Dysautonomia International is a great resource!

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