Hello world! Welcome to the life of a POTS patient!
You may be wondering what is POTS. No it is not pot that people smoke. I was diagnosed recently with Postural Orthostatic Tachycardia Syndrome or POTS.
Now I really have you scratching your head! Let me explain a little for those of us that have no knowledge of the medical field… don’t worry, I had no idea what POTS was when I heard it for the first time!
First a little background information on my crazy past. For about 4 to 5 years now I have had these weird episodes where I passed out just randomly. I would get tingles in my arm and then be out. It all started when I went to my doctor because I was sick, couldn’t eat a full meal, was losing weight, and down right felt like crap. It all started with an ultra sound. My primary doctor said they saw something and needed to do a CT. The CT came back with not a lot of information so my doctor ordered an MRI and that’s when they found a mass on my adrenal gland.
My doctor sent me to a surgeon who then sent me to an endocrinologist. Long story short, after being poked at and told nothing was wrong with me yet the mass was growing and the passing out was getting worse, I finally made the decision to go to Cleveland Clinic. Within about 5 minutes of my appointment I was told the mass needed to come out because they feared it was cancer. Two weeks later I had surgery. Come to find out it was benign! Thank you Jesus!
After my surgery we were hoping and thinking the passing out would just stop and the problem was finally resolved. Easier said then done. I was still passing out and no one could tell me why. I went from doctor to doctor and no one could tell me what was wrong. I was getting tired and frustrated. I went and started to see a cardiologist who ran even more tests and one day just looked at me and said that there was nothing wrong. I was told it was all in my head and that there was absolutely nothing wrong with me. I was told that basically I was making it up for attention. Can you say OUCH!?
Here I was, in my early 20s and no one would listen to me. I was passing out at random times and having weird symptoms. I had bruises and bumps from all my falls yet no one believed me. I started getting this horrible problem with my right leg where it would turn purple and get icy cold and I would lose feeling to it. So then I started seeing two more doctors for this. They had no idea what was wrong and told me I had Chronic Regional Pain Syndrome… but yet I had no pain! This problem would only happen when I sat down and stood up. I had no pain at all, I was just losing feeling. The only pain I had was from spraining it because I lost feeling once. They tried injections in my back and physical therapy but nothing helped.
Then the back pain started. I had lower back pain for no reason. I went to a chiropractor in hopes that it would help my leg and back. Needless to say.. it didn’t. Go figure is all I could say at this point. But then I realized… the passing out had stopped some what. I hadn’t had an episode in quite some time. I was relieved and thought finally it was over!
Until recently… oh yes that is right I had another episode and this one was much worse! I had recently moved back down to GA and moved home to save some money. I started a new job and was loving it.. even though I was stressed at times. On Tuesday, December 3, 2013 I blacked out at work. I was sat in a chair which helped me from completely going down. I went home and tried to sleep it off like always and take some Advil and Tylenol. But something just didn’t feel right. Normally I could just sleep it off. The next morning I decided it was time to go to the hospital. The ER doctor tried to tell me it was vertigo and gave me some medicine for that. I was told if it didn’t help to come back. So home I went and started taking this medicine. Let me just tell you… it did NOTHING. So here I am in agony and so upset because I can’t stand or sit without feeling like I’m going to pass out again. So my mom and I decided it was time to go back to the hospital.
So now at visit number 2 the doctor walks in and says no way no how it is vertigo. I didn’t feel like the room was spinning I felt like I was on a boat and moving. They did a CT and nothing was found. I was told to go to a neurologist. I got home at about 3 in the morning and only had the strength to make it to the couch. The next morning I called 3 doctors for an appointment. The only appointment I could get was for the 17th. I was horrified that I was going to be dealing with this feeling for so long and have to wait till then and then it would just go away and I would be told it was all in my head again.
As I sat there and worried, because that is what humans do best, I got a call saying that there was an opening on Tuesday the 10th. I said I will take it and that was that. I was relieved that maybe I would get some relief in a few days. Oh but I was wrong. After spending an hour with the doctor and him listening to my heart and my heart rate and my blood pressure and all the hell I have been through for 5 years he looks at me and says “I believe you have POTS” I must have looked at him like he had 10 heads. I looked at him and said… please explain. So he said well I can’t give you a confirmed diagnosis because there is a lot I need to rule out first and there is a lot of blood work but I believe you have Postural Orthostatic Tachycardia Syndrome.
Of course I start looking it up… my first though was “LIGHTBULB” yes this makes sense. What happens is blood pools in the legs and hands and when you stand the blood doesn’t flow to the brain like it should which causes light-headed, dizziness and syncope (passing out). When people with POTS stand up their heart rate goes up and the blood pressure bottoms out. Then I continued to read the symptoms… this was me to a t! I was exhausted but so happy to have answers!
So the Sunday after my appointment I thought I was feeling a little better. I was to do all my blood work on Monday and was hoping to go back to work on Tuesday. But my body had other ideas and plans for me. I decided I wanted to attempt to go to church with my mom. I made it through mass and then we decided to go eat. When we were out to eat I started getting really hot and was starting to sweat. I was going in and out and fading quickly. My mom got a manager to help me get to the car but I never made it. I don’t remember much other than going to the hospital in an ambulance. The last thing I remember is some kids shoes.
When I got to the hospital the doctors called in some favors and sent me for an MRI which came back fine. So they decided to admit me into the hospital. No one wants that! I was so upset but it was the best place for me. The next morning the nurses were told to try and get my blood pressure and heart rate laying, sitting and standing. When I stood up my heart rate went up to 150 when it is normally between 60 and 70 and my bp completely bottomed out to where they couldn’t even get a reading it was so low. I had 3 nurses holding me up and I was in and out. The cardiologist came in the next day and said that yes it is POTS and started me on a beta blocker.
Wednesday I had another episode where my heart rate went up to 130 just from getting off the toilet. I was so tired of this! My neurologist started running all the blood work and some of it came back elevated.
I was told I had Lyme disease and started on medicine. Then had an MRI of my tummy to make sure nothing was wrong with my other adrenal gland because my cortisol was low. When it came back clean I was told I had adrenal insufficiency most likely and then later told I might have mastocytosis. I was drowning in all this new information and still am.
Lyme disease was finally ruled out but I was started on medicine for adrenal insufficiency. I was told I would probably need to go to Emory for mastocytosis because it is so rare. I was started on physical therapy in the hospital because I have had no strength and the dizziness still had not gone away.
On Christmas Eve I was finally released from the hospital. I would love to say all my symptoms have gone away but they haven’t. I have had 2 episodes of passing out since I have come home. I am tired and exhausted and at times want to give up.
But I won’t give up! I want to be a voice of awareness for POTS. I really encourage you to go read more on POTS if you do not know much about it. Many people are misdiagnosed and told it is anxiety when really it is not, it is POTS.
This blog will be all about my experiences of tests, appointments and struggles. I want people to be aware that this is REAL! I want people to realize the struggle of living with POTS how every day is different and how symptoms come and go.
If you have questions, ask. Please no negativity! POsiTivity is excepted!
If you made it to the end of this post.. Thank you for sticking it out to the end. I can’t promise that all my posts wont be this long, but I will try. I will try to update with positive thoughts, pictures and quotes as often as I can.
I want to thank a few people real quick before I sign off. First my parents, my mom stayed with me a lot during my hospital stay and they are helping me out with all the struggles I am going through. Next, my sister for visiting me in the hospital and even helping me take baths… never thought that would happen. Also, my brother and his girlfriend who have given me encouragement and even carried me to my bed after an episode. My boyfriend who hasn’t given up on me even though I have all these problems and is still by my side. My dear friend Mrs. Dixon for suggesting I start a blog to help gain awareness. All my friends for being so caring and loving and praying for me! My friend Megan for bringing me tears when I felt at my lowest reminding me that no matter the miles she is there to listen when I need someone. My family, especially my Grandma and soon to be cousin Amanda for checking on me and relaying messages. And for all my other supporters who have made sure I don’t give up.
My last shout out is to my AMAZING nurses. They helped me through some rough times and through lots of tears. I had many a pep talks but the last night was the best. Thank you to the wonderful care I was provided from my nurses and doctors. One day soon I hope to walk into that hospital.. go up to the second floor and walk in with no walker!
That is all for now my friends! Please remember no matter the struggles we face, we were given them for a reason. God believes we can handle the struggles he has given us. So stay strong my fellow friends!
Till my next post…