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There's No 'One-Size-Fits-All' Treatment for POTS

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Editor's Note

Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

When I was first diagnosed with postural orthostatic tachycardia syndrome (POTS), I was offered one treatment only. I was given the standard treatment for POTS in my country which is fludrocortisone and ivabradine. No other medications or exercise programs were discussed. I was told I would be able to go back to work full-time after a few months of this treatment. I was overjoyed, naïvely thinking that just two pills a day would be enough to cure the illness that had left me bedridden for 18 months.

Unfortunately, like many others with POTS, this wasn’t the case. The fludrocortisone made me so sick that I was unable to eat. The ivabradine lowered my heart rate slightly, but it was still over 100 bpm after standing for too long. There was no way I would be able to work full-time again. I was disheartened and angry that I had to take even more medication to combat the side effects of the first medications. I still wasn’t offered an alternative treatment for my POTS. My doctor even had the audacity to be surprised when my symptoms showed very little improvement.

There are several different kinds of POTS and each one has a different medication and treatment program. When I asked my doctor to do more tests to establish the underlying cause and type of my POTS,  he refused, stating that the tests were time-consuming and they wouldn’t affect his diagnosis or treatment program. He also repeated his party line of “you’ll be better by the time you’re 30” which is not something that you want to hear when you’re 23. In the months following that appointment, I was still bedridden and housebound most days. I was nowhere near ready to go back to work full-time as he’d promised.

As I disagreed with what he was saying, I did my own research into the subject. I found out that there were many different treatment options for POTS that I had not been offered or made aware of. Due to my sensitivity to medication, I believed that a combined treatment of IV saline and a graded exercise program would be the most suitable for me. I took my research to my next appointment and I was surprised when my doctor said that he would arrange that treatment for me.

I felt relief from my symptoms almost instantly after I’d started my new course of treatment. Because I’d been living a sedentary lifestyle for so long, my graded exercise program started off with muscle strengthening exercises only. After a few months of building my muscle strength, I was able to introduce some gentle cardio exercises into my program as well. After about six months on this course of treatment, I was able to return to university to study full-time as well as taking on a few extracurricular activities.

As with any illness, what works for someone else may not work for you, even if you have the same symptoms. It is wrong for doctors to persevere with a “one-size-fits-all” style of treatment for an illness that has many different underlying causes. For those with complex illnesses, like POTS, I would recommend doing extensive research into your symptoms/illness before any doctor appointment. Your doctor may not be an expert on your illness and, therefore, may not be aware of all the treatment options available.

Getty Image by megaflopp

Originally published: December 20, 2018
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