Dealing with not so well-known chronic illnesses in Japan

Last year I found out that I have POTS which is short for postural tachycardia syndrome. It’s a chronic illness that is mostly known for having a high heart rate when being upright but also comes with symptoms like dizziness, brain fog, headache, back pain, neck pain, feeling anxious, insomnia, fainting, random sweating, fatigue and many more.

I have had symptoms on and off ever since my early twenties and have mentioned these to several different doctors in Japan over the years. As I had not heard of POTS until last year I was not able to connect these symptoms and ask for POTS specifically. Unfortunately the same goes for all the doctors I went to. I went to several internists, several orthopedics, a pain clinic and a specialist clinic for blood vessels.

They all would do some standard tests and would find nothing. As according to doctors I was too young to have anything serious I was told to go and find myself a psychiatrist as all my symptoms are probably being caused by stress.

Feeling out of options I did actually go to a psychiatrist and they would just give me sleeping pills for my insomnia, without actually trying to find out why I can’t sleep at night. When the weaker drugs didn’t work anymore they would just give me stronger ones until I got prescribed drugs that are known to be abused as “date rape drugs” in the US.

Once they wanted to get me on SSNI (a type of antidepressant), which is a type of drug you should avoid with POTS as it makes the tachycardia worse. When I told the doctor that I experienced a high heart rate as a side effect, they dismissed me and said that such side effects would not occur.

I remember one time I fainted on the train. I probably should have talked to a doctor about it, but I was afraid of being dismissed again so I never mentioned it.

Testing for POTS is actually quite simple and can be done with an oximeter (device to measure heart rate and blood oxygen) and having the patient stand up from a seated position. Yet no doctor ever mentioned this syndrome to me.

Now that I finally have a doctor that is aware of the syndrome, I am getting treatment. There currently is no go-to treatment for POTS but several drugs are being used as off-label treatment. With the help of my doctor I tried several drugs until I found the ones that work best for me. My heart rate is still high when I stand up but, but dizziness, insomnia, anxiety and pain have improved quite a lot with treatment. I just wish I could have gotten this treatment several years earlier.

Japan is known for its good healthcare system, just that it doesn't seem to be working for young patients with chronic illnesses.