POTS and my journey

Let me first start off by introducing myself. My name is Criss (a good friend of my calls me Poppet) I am 25 and have been battling POTS since I was 22 but did not know the name of it until I was almost 23 years old. I was officially diagnosed about 9 months later. We first had to get my poor asthma under control! 

How about we start from the beginning?

I guess you could say I had a normal life like any other "average" girl. I had a job, was in college, had a boyfriend, friends, went to the gym, and had a very active life. I don't want to say out of nowhere but I gradually started to get sicker. I would always complain about my heart racing but always wrote it off as typical asthma drug reaction. I was getting sicker and weaker every day but we had no idea as to why. My allergist I had then said I more then likely just had a tumor on my heart and was causing my asthma like symptoms, making me feel like I was having an asthma attack. Yes my allergist really did tell me this!! Poor Momma once again had to calm me down, I got in with a great group in my area, they did several echocardiograms (almost like an ultrasound but of the heart), we couldn't find anything wrong! My heart was structurally sound just very rapid. Frustrated with no answers, and several tests later. My Momma asked a doctor for any suggestions as to how to help me cause I was constantly having asthma attacks and went from working, school, gym, to early being able to get out of bed. Having such bad chest pain I'd be rushed to the ER thinking I was having a heart attack! Which thankfully she has some great co workers because then superman came into the picture. He is my pulminologist. I call him superman cause he fixes everything and superman is one of my fave superhereo's. The first thing he noticed upon meeting me was my pupils do not constrict like an average persons do. When light shine's on your eyes they naturally constrict to decrease the amount of light that goes into them. He had a pulseox and saw my heart rate went up as I stood up, talked, moved, and anything else I did. I shut up and sat down my heart went back down to atleast 100. He looks at me and goes you have POTS! Postural Orthostatic Tachycardia Syndrome!! After he got my asthma under control which was a life saver all in itself. He sat me up with a tilt table test. They strap you to this table like Frankenstein stand you up from a laying position attach you to all these wires and machines and try to mimic what happens to you in real life. Yep, I passed out and got my official diagnosis! Relief and nerves all in one! What does this mean? What happens now? What do we do? 

I had a lot of miss-steps since then. Most people with POTS can have betablockers for their tachycardia to slow down their heart rate. Well I have really bad asthma so that was out of the picture. So we put me on an ever so popular drug for POTS patients called florinef, well about a year later that had me admitted to the hospital for about 13 days! Which is when they put me on 24 hour saline which has been a life saver! I also have 2 great specialist working together to keep me stable. Yes, I know I still have not really explained what POTS is. Well here ya go if you are still reading.

POTS is a form of dysatuonomia. This basically means dysfunction of that autonomic nervous system. What does that mean? Well the autonomic nervous system controls your heart rate, blood pressure, breathing, digestion, kidney function, and everything else we do not think about. Most people with POTS have a wide variety of complaints, passing out, rapid heart rate, anxiety attacks for no reason, light sensitive, noise sensitive, heat sensitive, some sweat to much, some sweat to little, some have problems with digestion, some can not retain water, and there's also motion sickness! We can't forget the heart palpitations, chest pain, skipping beats and hearing your crazy! Most doctor's will right you off as crazy or a psych patient when there really is a name for this disease its just very under researched and under studied! I deal with a lot of these symptoms on a daily basis. I have chest pain on and off, palpitations, shortness of breath from my asthma and POTS, my eyes do not constrict properly so I am always seen with sunglasses on. I can NOT retain an once of water. So when I have a mild asthma attack I become very dehydrated. There's is a lot more on this but I will get my research out so it is more accurate. 

I personally have come a long ways with my POTS. I went from not having a life, to getting a small fraction of it back. So I have saline going ALL the time? I can now go to the mall with Momma here and there! Which in itself is amazing! I will leave you all here for now, I know this is/was a lot to read and I hope you all enjoy myself and I can bring some awareness your way!! 

Love, Poppet :-D