My Introduction

[momandmore]

Hi! I've recently joined and thought I should introduce myself. I'm 45 and was just diagnosed with "POTSy Dysautonomia" after thirteen years of tachycardia and dysautonomic symptoms, though looking back I probably had issues for longer than that. Over the years, I've had four echos, four holter monitors, and thick piles of blood work on numerous occasions to rule out every medical condition known to man. In the end, was always told it was anxiety, or due to pregnancy when I was pregnant.

I always thought if I could just get cardiovascularly conditioned, my heart rate would be normal, so I began exercise seriously, starting slowly and making myself sick at times. But after eight months, the tachycardia was still there. Frustrated, I went to a GP I knew to be very thorough with copies of an article on POTS by Dr. Satish Raj and said, "I've done everything I've could and I'm still tachy. The only time I haven't been tachy is after childbirth when I had extra blood volume and then when I was sick in the hospital on IV fluids and lying down for three days. I truly was anxious when I was in the hospital but my heart rate was sixty, so I know it's not anxiety that's causing my tachycardia. I want to figure this out." He read the article and said, "We'll have to start from scratch with testing, but I think you're right... I'm sorry I thought it was anxiety."

Then I went to a cardiologist to get the tilt-table test my GP wanted me to have, but the cardiologist only would order a treadmill stress test. He refused to believe I could have an orthostatic problem because I never fainted. Getting low to avoid a faint didn't count. When I went for the treadmill test he ordered, the nurse walked in and said, "I hear you have anxiety." When I heard that, it was like a dam broke inside me. I gritted my teeth and growled, "I don't have anxiety. I have had tachycardia for over twelve years! I know what anxiety is and I have not been anxious for twelve years!" I thought she would think I was crazy but at that point I didn't care. Unexpectedly, I could see respect in her eyes.

You know how when you get medical tests, the people performing the tests tend to be very stoic? Well, the tech who was there for my treadmill test said to the nurse, "Look at that!" as she watched what my heart did after they hooked me up and I got up and walked over to the tread mill and started walking. The nurse kept asking if I was okay and if I could keep going, but I am rather used to heart rate wonkiness and stayed on for quite a while. Seeing that, the nurse became very kind and told me I'd be wasting my time going back to the same cardiologist because he had "already made up his mind" about me. She reassured me that it wasn't in my head and I should get help for this. She told me I needed to see an electrophysiologist, someone who specialized in heart rhythm disorders, and gave me a recommendation.

The electrophysiologist was great. He reviewed all my cardiology records before he saw me. He came in and said, "This is what's going on," and he described POTS to me in baby terms. I wanted to be clear about what he meant so I asked, "Do you know what dysautonomia is?" And he said, "Yes, and you have POTSy dysautonomia." He double-checked my massive pile of bloodwork, and he said there was no question about it and I didn't need a tilt-table test.

It was so wonderful for someone, for the first time, to understand all the symptoms I had for so many years. He told me I should keep exercising (though he seemed genuinely surprised that I had been able to manage it) and keep up the fluids and salt, which I had already increased after problems over the summer. He wanted to see how I did over three cold months before seeing him again and trying any meds because he's worried about side effects. I felt somewhat impatient with that plan, but I think he decided I could wait after I told him that in the past I had gone years with hardly a day going by without feeling as though I could collapse but that these days I feel much more functional. Unfortunately, I got a letter in the mail that my appointment had to be rescheduled and my appointments has been pushed back another month. Ugh.

I'm really trying to consider what meds might be right for me. I don't exactly know what kind of POTS I have, and I can't easily travel to get specialized testing. All I can say for sure is that I know the tachycardia started seriously during third pregnancy but I had palpitations and periods of weakness before that. It can flare and become very troublesome during pregnancy, with viruses and other illness, and after dental surgery. My worst bout was after a bacterial infection and I felt woozy for over a year.

If I have to wait very long, I could discuss medication options with my GP, give him some recommendations based on research, and see if he would be willing to try something. I think he would be willing to help. Or I could try another cardiologist who specializes in autonomic dysfunction and was recommended but is somewhat farther away.

What I know has helped:

a very regular sleep-wake schedule

probiotics to maximize immunity (I hardly get sick anymore which has reduced flares)

gaining weight

exercise

Smartwater

increased salt

loratidine (reduced unexplained, vague pain--mast cell related?)

Next plan: finding better compression leggings!

Thank you for taking the time to read this if you made it this far, or even if you decided to skip parts. I just felt it was time to get it off my chest with people who might understand. I would welcome any ideas or suggestions.

[Katybug]

Welcome to the forum! It sounds like you are doing a lot of the right thing gs including finding a doc who has a clue. It's hard to say what may help I the way of meds because it seems we all react so differently. Mostly it has been trial and error for most of us to find the right combination of help with least side effects.

[sideofsalt]

Welcome momandmore! Congratulations on getting a diagnosis. For me, medication type has been a trial and error process, but the dosing has been even more so. I've been fairly stable on my prescribed regimen once I got the dosages right. I was lucky to see a doctor who specialized in dysautonomia.

[MomtoGiuliana]

Welcome to the forum! Your experience with diagnosis is so similar to many with this condition. Great you finally have a diagnosis. It can take some time to find the best treatment-each case seems to be a bit unique.