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How It Started:

As a younger child, I was fairly optimistic and that included any pain I had. I believed that if I just waited my pain would go away. After 2-3 years with consistent headaches, in March of 2011, I told my pediatrician, who believe the headaches may be caused by fluid in my ears, as I had a history of ear infections. Again, I let my optimism get the best of me and didn't bring anything up. In December of 2012, I was tested for anemia and passed out in the doctor's office. By distracting myself, I put the dizziness and headaches off until November of 2013, and soon was given Imitrex, a migraine medication that made me feel insanely dizzy. Soon, my mom decided to make an appointment with a neurologist, Dr. Wolf, whom she had mentored a few years back

Postural Orthostatic Tachycardia Syndrome

by Carys Obertone

Recently...

I have gotten a 504 Plan with the school, that allows me to not be penalized for the enormous amounts of school I miss due to my chronic illness.

Reflection Time!

What is POTS?

On February 2nd, I went to a elaborate pain clinic (that took 8 months to get an appointment to) and was seen by a nurse practitioner, a doctor/anesthesiologist, and a psychologist. They suggested myofascial release therapy in addition to physical therapy that would strengthen my upper back and neck. I am now going to physical therapy in addition to working out consistently.

He measured my heart beat laying down, sitting, and standing...

POTS is an illness related to how the body reacts to posture changes, like standing and lying down. Many symptoms include low blood pressure, low blood volume, headaches, dizziness, abnormal heart beat, general weakness, fatigue, and much more. In my case, I do not have enough blood in my body, so my heart works harder to get blood circulating. Due to my heart beating so fast, my body is tired almost all the time. Imagine this. If you ran all day while you were awake, would your body be tired? Of course it will. My body is working like I am running all day with a normal heart rate of 110 bpm. So most of the time, it is very hard for me to get out of bed if I haven't had at least 7-8 hours of sleep, which is very unrealistic for a high school student.

Unfortunately, my body doesn't like responding to medicines..

Oddly enough, my heart beat jumped over 30 bpm when I changed positions and my resting heart rate was extremely high.

Spoon Theory is the idea that your energy is limited and in this theory, your energy is represented by spoons. This idea makes it easier to explain to others without a chronic illness why we have such little energy. It also shows how much energy it takes for someone with a chronic illness to do a simple, daily task.

I enjoy this way of explaining things simply because there are SO MANY funny examples of spoon theory on the Internet and it makes a metaphor for what my life is like. Also, I kind of enjoy making fun of myself because I get tired after a shower.

Throughout the past few years, I have tried 12 different medicines, at different doses, and some even at the same time. However, my body seemed to either reject them or simply ignore them. I have tried blood pressure medications and various anti-depressants due to their ability to lessen headaches. Currently, I am back on the same medication I started with because I'm not sure what to take anymore. Honestly, I have no idea if anything is working because I'm too afraid to go off my medication to see.

Soon, he diagnosed me with postural orthostatic tachycardia syndrome or POTS for short. I did a lot of research to simply figure out what that meant, however the illness was rarely diagnosed.

I started taking amitrptiline (10 mg), a anti-depressant that was supposed to help headaches.

Taking Action:

Investigating:

Some days, I absolutely hate my life. Every week, I go to doctor's appointments , I miss 1-3 mornings of school, I have physical therapy, and I get frustrated. I can no longer have sleepovers with my friends or else I won't be able to function for the next few days. Some would say I have a right to be a little annoyed with these aspects of life, but I have recently changed my mindset. When I went to the pain clinic, they called me a miracle. Most people with my illness are not able to go to school or work at all. Fortunately for me, my legs are very strong, which helps circulate blood throughout my body, which in turn, keeps me upright. Additionally, my pain tolerance has gotten so high, I don't necessarily feel any pain until it reaches the worst level it can get. This high pain tolerance is due to the 6-7 years of constant headaches, normally registering a 7 out of 10, and also to getting IVs every week. Speaking of IVs, I have very hard to find veins and a lot of the time, people struggle to find them. Multiple times, I have gone home with 5-7 pokes without getting an IV, and then I have to come back the next day. I absolutely cannot be mean to these people who are just trying to help me, but I admit that deep down I am so frustrated that I want to scream. However, I have become more understanding and will just come back the next day, even though a day without an IV is terrible. Even with this, I am so grateful for the just the access to IVs every week for an affordable price. Also, even with my symptoms getting much worse as I started high school, I am in the top 0.5% of my class. Honestly, the symptoms have probably gotten worse due to stress and sleep deprivation, but I put so much pressure on myself to do well because I know I can. So I will definitely continue to push myself to do my best, but I will keep in mind the limits that I have. After explaining my illness, I don't want anyone to pity me. Instead, I want people to be able to realize that a chronic illness IS a thing. A chronic illness is an illness that persists for a long period off time, meaning it doesn't magically go away. Just because someone seemed fine yesterday, doesn't mean they are required to be fully functioning today. Let those dealing with chronic illnesses deal with them alone unless they ask for your help, because they probably have all the help they need. Some people will deal with their illnesses different, but please just them do what works for them.

Thank You!

I have essentially given in to the fact that I am living with a chronic illness, but now I want others to realize it doesn't necessarily debilitate you from doing what you want to do. Yes, you may have to do things differently than others, and maybe a little slower, but that shouldn't stop you. Your illness does not define you. Additionally, if someone is able to function with an invisible illness, please do NOT give them a hard time. Even though someone from the outside cannot see the pain a person is in, doesn't mean it doesn't exist. Overall, my goal is to get people to realize it isn't always clear to see if people are in pain and that either way, you need to respect people's actions and encourage them rather than question them.

In all honesty, this was not a project I needed to do a lot of investigating for because this is what I live with everyday. For the past three years, I have done extensive research in order to figure out what I can do to help myself get better. My mother follows many Dysautonomia Awareness Groups on Facebook and there are little communities that help people with POTS. Through these communities, others dealing with a similar chronic illness are able to sympathize with others, find new ideas for treatment, and realize they aren't alone. The Internet is amazing and is so useful to help bring people together. So while I didn't do much research specifically for this project, I have done it in the past, and now it's common knowledge to me.

What else have I done to try to fix this?

11/20/14: MRI to check for a brain tumor, came back negative. Unfortunately at this point, I honestly just wanted them to find something so that they could fix it.

5/1/15: Started getting IV fluids at Vida-Flo weekly. The best thing I have found to help my dizziness.

5/16/14: I went to a cardiologist, normally a common specialist to go to with my condition. However, she failed to listen to me, told me my heart was fine (which I knew), and had the audacity to tell me to lay down when I feel like I'm going to pass out. This was a huge waste of my day and I was rather annoyed.

3/13/15: Thyroid test that came back normal.

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