So…the blood doesn’t always go to my head. Explain a lot doesn’t it?
That is my self-deprecating joke that I use to help explain my rare condition, postural orthostatic tachycardia syndrome (POTS). The Cleveland Clinic defines POTS as a form of Dysautonomia. Dysautonomia is a disorder of the autonomic nervous system (ANS) function that generally involves failure of the sympathetic or parasympathetic components of the ANS. I was diagnosed in 2013 but I have been having symptoms all my life and I have been fainting since I was a freshman in high school.
As my Grams altered my homecoming dress for my ninth grade homecoming dance, I did not recall feeling weird or unsteady but, I just fainted. My Aunt and Grams thought I just gotten too hot or didn’t eat enough that day. They always thought I didn’t eat enough but that is another story for another day. BTW, I had eaten enough.
Thinking further back, I had other POTS episodes, but it all stemmed from me being awakened in a jolt from someone yelling or having to rush out of my bedroom for whatever reason. But the very first time I officially fainted was ninth grade (1994).
Then a few years later in 11th grade (1996), I don’t remember anything except that I was late for work. I got to work, started to drink a Dr. Pepper and then I woke up on the floor with my Uncle trying to wake me up. A co-worker said that I hit 4 wooden shelves on the way down to the floor. I don’t remember any of it. I was accused of being a drama queen because apparently drama queens make their heads hit 4 wooden shelves and then hit the cold hard floor. I don’t remember fainting or falling or any of it. Just waking up on the floor.
Surprisingly, I didn’t have an episode for a while. In 2002, I fainted when I accidentally cut myself, but I can’t stand the sight of my own blood so I can’t blame that on POTS. Although one time spontaneously I did faint later in 2002 and I finally went to the ER. They told me to eat salt, drink water, took EKG and EEGs and nothing, just nothing.
Fast forward to 2006 on Ash Wednesday and I woke up sick to my stomach. I laid my head on the vanity in my bathroom and I woke up on the floor across the room. Apparently, I fainted and had banged my head pretty badly on the vanity. My left eyebrow area was black and blue and green and every other color at that time and then the following weeks afterwards. I had the knot on my left eye for years. People thought my boyfriend, now my husband, had beaten me (he hadn’t, he was at work even). Still…. no doctor could tell me what was wrong or why I was fainting.
I didn’t worry about it too much because the fainting was so random and there was no rhyme or reason so it could always be attributed to either waking up the wrong way, dehydration, not enough sleep or anything in-between.
Years went by and almost no fainting episodes happened. I had a son in 2009, and I had no problems related to POTS.
Then, one time in 2010 my son darted towards our somewhat busy street at our home after a trip to the store. I yelled for him to come back and ran after him but blacked out. I woke up as I heard a car pass by with him by my side, my legs and feet were all cut up from falling and rolling to get to him. Apparently, I had fainted, tripped on multiple tree roots and destroyed my knees and left foot on the concrete sidewalk. My baby boy was safe and that is all that mattered. I attributed it to the severe stress at that moment in time and did not think that it was related to POTS because before this time, the previous times were not stress induced.
Fast forward to 2013. It was a snowy day in February in Nashville, and I was rushing around trying to get my son and daughter ready for her checkup. She was just a few days old. I had her in my arms, and I was coming down the stairs and then, black…… I fainted as I was coming down the stairs. I woke up at the bottom of the stairs. She was still sound asleep swaddled in my arms and I had instinctively slid straight down on my back. After I came to, I knew now was the time that I needed to inquire about my condition further.
Luckily, I was in Nashville. Vanderbilt is one of the only and best Autonomic Nervous Systems Centers in the country. I went to the doctor and of course she tried to give me the run around.
Have you drank enough water? Have you had enough sleep?
Yes, sure. Yes, as much as a newborn and a 3 year old will let me. Listen...I know people who survive off Red Bull and 4 hours at night of sleep and aren’t fainting randomly and without warning. But I answered all the questions required. They also took my heart rate laying down, sitting up and then standing up. There were significant jumps in the rates so, I had a tilt table test (TTT) ordered for me.
At the TTT, the nurse and maybe another nurse, strap you to this table and stand you up then tilt the table 30 degrees. So, I’m there strapped in and tilted back, and I can feel the blood pooling in my legs. The nurse is sitting in the chair just casually writing in her chart and right before I pass out, I say to the nurse “Here We Go.” I had passed out at the 5 minute and 46 second mark. I wake up in an extreme anxiety attack. The one where your hands are claws and you can’t calm down. Finally I calm down after a little while and go home.
Weeks later, I was ordered to take another test to figure out whatever the doctor needed to figure out. Same thing happened … They lay you down, strap you in and tilt the table 30 degrees. With the exception of the catch phrase, I passed out around 6.5 minutes. When I woke up, I was having the worst anxiety attack of my life. It literally took two people, 45 minutes, a Powerade and some cheez-its to finally calm me down. There was a male and female nurse in the room and the male nurse literally ran to get me a Powerade. He spent his money to get me some electrolytes. He’s was the real MVP of that day.
Months later, we were finally able to come back home to Slidell and left Nashville. I got to see my all-star Nurse Practitioner, Kerri. She prescribed me Metoprolol. It is a beta blocker and it kept my heart rate from skyrocketing. I remained on it daily for years. It did significantly decrease my heart rate and I did not have fainting episodes. I might have felt faintish, but never did I faint. I did however gain like 30-40 lbs. Normally I weigh 100-120 and was once accused of being anorexic/bulimic, etc… and I ended up weighing 155 and I was like…. hold on …something is wrong.
After 2 years, I got off the metoprolol. I lost all the weight. Well, almost all of it. But I feel like more of myself again.
Fast forward to last month when I caught the flu from hell. Fever, chills and an eventual 104.5 fever. I had to have my friend, Danielle, drive me to the doctor and she even watched my babies and fed them McD’s! Anyhoo…So, my nurse practitioner told me I tested negative for flu, but I begged for any sort of relief and the this nurse practitioner gave me a steroid shot. I fainted twice. Her method of wait and see didn’t work for me because my conditions weren’t improving, they were worsening. Two days later, I was back at the doctor’s office and I finally got to see Nurse Kerri and she prescribes me many medications that eventually made me feel better along with a new prescription for metoprolol to use as needed. I eventually got better but I learned that the flu can make my POTS flare up and make the flu 10X worse. Autoimmune syndrome + flu/virus/nasty cold = terrible recovery rate for Melissa.
I am in no way a medical doctor, nor do I have a medical degree, nor have I even taken a nursing class, I can only share my experiences in hopes that it may help you in any way possible. POTS is an uncommon autoimmune syndrome and some people have more severe symptoms of the syndrome and some can have less severe symptoms of the syndrome. Not everyone is going to have the same kind of symptoms or severity of symptoms.
What I have learned about this whole situation is that you do have to take care of yourself and listen to your body. Since I made the decision to stop taking my metoprolol regularly, I have had to pay more attention to my body. I have taken some over the counter medications and they have affected me badly.
I was having trouble sleeping so I decided to get some Ashwagandha. For the first three nights, it worked like a charm. I would take it and 30 minutes later, I was out like a light. It was awesome. Then, I started having POTS symptoms in the daytime hours. I listened to my body and I did a little bit of research and it turns out that it can affect my autoimmune syndrome. So, in the trash they go.
Ok, so I am a water snob. But I have a good reason to be. The whole flu/sickness/death warmed over situation I had in January, I could only barely drink water. Did you know that Spring water does not have naturally occurring electrolytes? I felt terrible and the water tasted terrible but spring water was the only kind I had when I got sick. I have always told people I love Evian and I love Fiji and I love this other water from Rouses’ because it just “tastes better.” Well, my body craves the electrolytes. Fiji, Evian and Rouses’ water have naturally occurring electrolytes so it tastes better to me. After I got to the store and I was able to get some electrolytes in my water, I began to feel better too. I suppose it is the little things!
Luckily my husband donates enough blood for the both of us because he is a universal donor. I have tried giving blood and it takes forever and I am wrecked afterwards. I am a big proponent of blood donation but I just physically am unable.
It is difficult. There are days that I just need sleep and rest and that is just what I do. I listen to my body and I respond accordingly. My condition is not as severe as others and there are others that would be shocked at the severity of my condition. I hope that by reading my autoimmune syndrome story can help just one person realize that they aren’t alone in their battle, cause you are not. There are literally 450,000 Americans or more living with POTS and for more information on POTS, click here for the National Institutes of Health information regarding POTS.
To cope, what do I do?
- Drink lots of water infused with naturally occurring electrolytes (Fiji, Evian, Rouses’ Artesian Water, if you live in Southeast Louisiana like me)
- Keep salt pills handy ( I use Thermotabs-ask your pharmacist)
- Keep my metoprolol prescription filled and on hand at all times
- Eat as much salt and salty things that I want and yes, you will have to explain this to everyone as you salt your food at their house that it is not a testament of their cooking but a condition that you have. As a kid I use to literally pour salt in my had and lick it off. And I use to eat rock salt like candy. Gross to some but to us POTSies, that sounds wonderful. Lol.
- Stand up slowly if you are sitting/laying/squatting down.
- Rest when needed. Naps are your friend.
- Keep Pedialyte in your refrigerator, purple (Grape) is the best tasting I can find.
- Drinking alcohol does make your condition worse. I am such a lightweight these days but, just don’t overindulge!
- Don’t try a high impact exercise class unless you are somewhat in shape already. I tried. I failed miserably. My intentions were good but, maybe a fairly low-impact workout regimen is where those of us who don’t work out regularly need to be.
For more information on your condition, please contact your doctor or nurse practitioner for further testing or treatment. I have also made a shirt through my shop that I thought all of us POTSies would appreciate! Click on the shirt below!
Teal is the color of Dysautonomia Awareness!