A Beginners Guide to Postural Orthostatic Tachycardia Syndrome

Last month marked the year anniversary of my last visit to the autonomic center at Stanford.
No I didn't have this date circled on the calendar, I just happened to make the mistake of trying to drive somewhere on the high schools graduation day this year, which reminded me of that same day last year when I was trying my hardest to hold in the desire to pass out, and or puke while stuck in miserable traffic.
That tilt table test was a doozy, you guys.
But it got me thinking about how far I've come in this last year. Not that I don't still feel like a ticking time bomb waiting to go off, but things are a lot brighter then they were last summer.

So I thought I'd spread a little of my P.O.T.S knowledge out into the universe because there is nothing I like doing better then telling people what to do.
I'm really pretty good at giving advice about life.
You wouldn't be able to tell this about me because my own life is a giant pile of doodoo, but I do follow my own advice most of the time so maybe I shouldn't start up a new career as a life coach.

Just call me CarinaMD, which is basically what my real life social media handles are, but thats because that's all I could get related to my actual name not because I think I'm a doctor.
Now we have that issue settled down.
(shameless plug: follow me @carinamdee on all the things)

I could go on for days about doctors, and medicine and proper diagnosis. But this is more about after diagnosis.
You've been given this life sentence, what now?
(also see my letter to a newly diagnosed personage, and this post from  a few months ago)

If you don't have Postural Orthostatic Tachycardia Syndrome, and don't care to learn about treatment options or you don't have an hour to read this post, don't click on.
It's very long and very medical.

from me to you

Dear personage recently diagnosed with Postural Orthostatic Tachycardia Syndrome,

twenty-fifteen

Ending up twenty-thirteen, I was sure that the next year was going to be my year. The year that only good things happened to me, the positive year to end a long row of lousy ones. Twenty-fourteen started out with a new niece, a great job with the best people, no debts with money in the bank, no major issues with thee old p.o.t.s, and the goal that this year I would finally make it Europe. Yes 2014 started out alright, I was positive and hopeful and sure that things were starting to turn around for me. After all, the last good new year I had had, before my body started turning against me, was back in two thousand and ten.

Down in the POTS

Postural Orthostatic Tachycardia Syndrome. That has been my life for the past three and a half years.

And here is an incredibly long and boring story of it all, to get it all out in the open before we continue on over here:

It started with a cold, a weekend trip to Disneyland, and going right back to work the following Monday despite it all. Then a quick upstairs to downstairs move the next weekend, where I moved all of my belongings myself up and down a flight of stairs. Fighting an illness, plus heavy lifting, plus lots of dust; not a great idea for a body.

No rest, no time to recoup and it let the germs take over. Just pushing through until the ill feelings passed. But they never really passed. For the next few weeks, I continued to feel weak and tired, along with a looming lightheadedness every time I changed positions.

Eventually, in early November it all came crashing down.
The first sign was when I passed out during a routine back X-ray as part of my chiropractic treatment, which resulted in a miserable trip to the ER where they (without running any tests to prove it) diagnosed me with dehydration and sent me on my way. I took the next day off of work, rested and drank my weight in liquids thinking all would be well. The following day, I returned to work and felt fine all day, and decided I must have just been dehydrated after all. The next day however, I was back to feeling faint all day, and at some point that morning passed out in the bathroom at work. Thankfully, no one witnessed that, or I would have died from humiliation right then and there. I went home, rested and tried to shake off all of the things I was feeling every time I got out of my bed. Dizziness, nausea, lightheadedness, and an increase in my heart rate which made me feel exhausted and left me drenched in sweat. All of that from simply walking ten feet from my bed to the bathroom. Forget about trying to make it all the way to the kitchen. That next Saturday however, enough was enough and I convinced myself to go to another hospital's ER.

Over the next several hours, they ran numerous tests to check my heart, lungs, head and anything else they thought of that could be causing my symptoms. When I mentioned to the Doctor that I felt like my body was running a marathon every time I stood up, He hooked me up to several machines, and made me stand up. For the next half hour or so, he took great interest in watching the numbers (and calling other Doctors over to watch as well) related to my heart rate and blood pressure rise and fall every time I stood, sat or layed down. It was determined that upon sitting upright, my heart rate would go up and my blood pressure would drop. When I stood, those vitals would continue to increase and decrease until my body would start to enter a vasovagal state to shut it down. Not until I laid back down, would my heart rate and blood pressure regulate itself.

As great as it was that they figured that out, he still had no idea what it meant or the cause behind it. None of the doctors in the ER had ever seen such a thing before. As luck would have it though, there was one intern that had heard of such a thing before. Postural Orthostatic Tachycardia Syndrome. A disorder that fit all my symptoms, and correlated well with my age and gender. (POTS is mostly found in females in their early twenties) I was admitted into the hospital for the night, and assigned to a lovely room with a loud epileptic drug addict, and a bed that would ring an alarm if I tried to get up without assistance. It was a very special night.

They continued to run medical tests and watch my vitals for the next 24 hours to secure their diagnosis, before they released me with a new medication and instructions to follow up with a cardiologist.The new medication did not help my symptoms, and additionally made me feel like my skin had been replaced with a giant icy-hot patch. Thankfully I was able to get in with a cardiologist within a couple of days, and he both confirmed the diagnosis and prescribed me a new medication to try, recommended that I wear compression stocking, and increase my salt intake.

The way I like to describe POTS to people, is that my blood is like a bottle of water.  If you flip a bottle over, all the water will fall to the bottom, and it cannot get back up without you turning it over again. If you lay it on its side however, the water equally lays across the bottle. This is like my veins. When I stand up, all my blood drops down and empties from my head making me lightheaded, and forces my heart to work overtime to make up for it. The blood then can't make it back up my body to circulate.  A normal nervous system circulates your blood up and down without issue. There are only a few medications proven to help with the effects of POTS, and in reality they are just there to equalize the symptoms, not cure it. The medications that they use have the job of restricting blood vessels, making the blood move slower. For example, the water in the bottle would move slower down if the bottle was being squeezed in the middle. Salt and compression stockings also have this effect.

The new medication he put me on worked well for a couple of weeks, before I started to have an increase of symptoms again. The dose was once again raised, and I stayed on that dose for a couple of weeks until it once again stopped helping. This went on for several weeks until I finally reached the highest medication dose permitted by the FDA, which thankfully worked for me, as my Doctor clearly stated he had no ideas for treatment after that point.

I lived on that dose for the next year and a half without issue. Yes, I often was fatigued, and I felt lightheaded if I stood up to fast, or stood in one position for too long, but I was able to get back into normal life activities such as grocery shopping, or taking the dog for a walk. I wasn't feeling back to how I was before,  but I was getting used to my new normal. After a year with no fainting spells, my doctor decided to try lowering my medication dose. While I did feel like I had to try a little but harder with less medication, I was feeling hopeful that I would be able to get off medication and be rid of this disorder.

Then, a couple months later- I came down with a cold. Which turned to pneumonia. Which started the whole cycle all over again.
My medication dose was raised again, with no improvement and new experimental treatments were tried to no avail. My vitals were actually worse then they had been the first time around, and I was having just as hard of a time sitting as standing.
Once again, my doctor was out of treatment options for this rare disorder and he referred me to a POTS specialist at Stanford Hospital.

So, for the last six or so months, the struggle has been real. I was trying to rest, work full time, and participate in as many normal activities as possible while I waited for my appointment at Stanford, and hoped for an instant cure. I don't go grocery shopping, I can't walk more then twenty feet or so at a time, and I cannot sit down without fidgeting or crossing my legs.

A few weeks ago, I finally was able to meet with the neurologist at Stanford, where he went over my complete medical history (literally from birth) and ran a series of tests on my nervous system.
And let me tell you, those "simple" tests were brutal on my body. They were simple functions, such as blowing into a tube or holding my breath, as well as a tilt table test where I had to be held in a standing position until I was about to literally lose consciousness. All tests that have proven to trigger the nervous systems, and thus make me feel incredibly ill.

The results were clear, I definitely have POTS. However, as the doctor explained, my POTS is a result of a nervous system failure that I already have. Not the POTS causing my nervous system to fail. Which really makes no difference in my treatment, or how I feel on a day to day basis, but it may mean that the POTS will go away if I can fix my nervous system.

A new medication had been added to my regimen, and has not made a dramatic difference so far. BUT, I have recently transitioned to a part-time working situation, and am getting serious about the things I can control; such as my food intake and physical activity. Already, I am feeling slightly less stressed and a little more relaxed knowing that I don't have to wake up every morning and fight through the day.

So what does all this mean for you, the faithful reader who may or may not have just read this whole boring tale?! It means, that I have time to blog again! WooHoo! I have a new little home office set up, and the time and energy to create!
My recipes may change a bit, as I am trying to limit my sugar and carb intake (they increase POTS symptoms) but, they will surely still be delicious!

Thanks for hanging in there guys while I have been going through all of this, and I promise to have some exciting things coming up to make up for it!

XOXO Carina