The first two years in Meghan's words...
If someone would have told me two years ago that I would have to put my life on hold because I was going to experience dizzy spells, nausea, and joint pain, I would have called them crazy. Nobody was expecting it. For me, life was great. Our family had recently gotten two Persian kitties and I was obsessed with swimming. I had gone to state, zones, and many other huge meets. It was my life. Two years ago I had never even heard the words “pots” and “syndrome," let alone the word “dysautonomia”.
Being bit by a deer tick is no big deal really, as long as you talk to your doctor and maybe take some antibiotics, which I had done. Three weeks later I had forgotten all about the tick bite, and during that first dizzy spell, not once did it cross my mind. I thought the dizziness was from not eating enough or dehydration, when in reality it was actually POTS. But in that stage in time, we were clueless. I continued to swim to the best of my ability at practice, but I just couldn’t do it. Everyone was telling me I just had to give it some time, take a break, but I wasn’t taking no for an answer. I continued to fight this dizziness all through the summer, until one practice where I was so dizzy that I knew I wasn’t going to be able to do it. We went home and I lied down on the couch, and that’s when the nausea showed up.
I have always had a sensitive stomach my whole life. No one really knew what it was before this whole POTS thing. We saw a couple doctors about it when I was little, and they all said my stomach was small, or I had a lactose problem, but no one really knew for sure. I remember sitting at the counter, not being able to get down until I drank all my milk. Everyday I would guzzle the milk as fast as I could, not just because I didn’t like the taste, but because it made me feel sick to my stomach. We tried lactose free milk, soy milk, almond milk, weird yogurt smoothies and much, much more, but in the end my mom just decided that I was being difficult. Before my symptoms first showed up I would get these annoying stomachaches when I would eat a lot of dairy products or when I ate too much. After my symptoms started, this was the feeling I would get all day, nonstop, from the minute I woke up in the morning, to the minute I fell asleep at night. Because of the nausea, every time after I ate I would feel sick, and because of that, it was hard for me to eat. We tried meals that didn’t have a lot of dairy, gluten, you name it, we already tried it, but nothing was helping, so I just dealt with it.
By this point in time, I had to take a break from swimming. I cried myself to sleep every night, knowing that once again I was missing another practice, which lead to another meet, which soon lead to me missing a whole season. I missed my friends, my coaches, and most of, just being in the water. I never realized how important swimming was to me until I could no longer do it anymore. It was awful, I was a wreck. Every night I would ask my mom to take me to the pool, and even tell her that if she didn’t drive me, I would walk.
Since we were getting nowhere with trying to solve the problem ourselves, we decided to see a cardiologist that could help us figure things out. We were told that I was most likely dehydrated and my blood volume needed to increase, which can be done by drinking water. He also put me on a medicine called Fludrocortisone, which helps you retain fluid that helps you build up your blood volume. He also briefly mentioned something called a tilt table test, which sounded to me like a death trap. After this appointment me and my mom were feeling really good about getting through this. I started drinking at least 100 to 125 ounces of water everyday. At school I was embarrassed because it was my first year of middle school and I was always the kid asking to go to the bathroom, and being asked all kinds of questions about why I drank so much water, and to be honest, I didn’t really know how to answer. Eventually I got into a good schedule of going to the bathroom in between my classes but I was still getting dizzy, even without the swimming. Throughout the fall it started to get progressively worse. I didn’t want to tell my mom that it was getting worse, so I pretended I was normal so that she would be convinced and take me to swim practice. But she wasn’t fooled, she could tell that I wasn’t getting better.
As things continued to get worse, we kept see all kinds of doctors, including cardiologists, neurologists, ear doctors, eye doctors, rheumatologists, many of which were all just a blur to me. One appointment that really stood out to me was an appoint we went to in November. I was extremely anxious for this appointment. Many doctors had told me it was all in my head, and I was starting to convince myself that maybe it was. This doctor again mentioned the tilt table test and described it in detail. She made it sound like I was being strapped to a giant table and flipping it. I was horrified. I immediately started crying, which caused the doctor to ask my mom to leave the room with her because she was making me anxious. I began to cry even more and refused to be separated from her. The doctor agreed to let her stay in the room, as long as I could calm down and relax. Then she started to make a list of therapists that I could see. She also mentioned I was probably anorexic and that if I didn’t gain weight soon social services may become involved. At this point I was balling and had no one clue what the word “anorexic” meant. She thought I was crazy. She thought we were crazy. I wanted to go home desperately, I didn’t want to be there, I didn’t want to deal with any of it, it wasn’t fair and I wanted it all to go away. The only reason I agreed to go to this appointment was because my mom promised me an ice cream on the way home. Nothing, not even ice cream would make this day worth it.
After that dreadful doctor’s appointment, I told myself I was never going back to a doctor’s office again for as long as I lived. But my mom, she had other ideas. She wanted me to get a tilt table test done. Unfortunately, at the time, there were only 3 places in Wisconsin that did tilt table tests, now there are about 5. My mom called all three and the soonest we could do one, was in three months! My mom thought it was unacceptable, and so did I, but she made the appointment anyways and we decided to wait.
About a week before Thanksgiving break we got a call from one of the hospitals that does tilt table tests in Milwaukee. They had a last minute cancelation – I was lucky because I wasn’t on any medication yet and qualified to take the test immediately. We were extremely lucky to get in at such short notice. I was not looking forward to going, but I wanted to get better. When we got to the doctor’s office, I was told that I was also going to have a sweat test done. I freaked out not knowing what I was in for. The nurse had to put on Christmas music to calm me down. We began the sweat test by getting hooked to a heart rate monitor and a weird machine that plugged into sensors wrapped around my wrists and ankles. Then I was shocked lightly by the machine to get my sweat glands working. It felt tingly. From the test, we learned that I didn’t sweat in some places, and that was definitely something wrong with my automatic functions. Then we started the tilt table test. In total it probably took about 3 hours to do the whole thing, which to me felt like days. I wasn’t able to watch TV because I was supposed to keep my heart rate steady and not have any stimulation. The test should have only taken about an hour at the most, but the doctor was late, and when he finally showed up, we had to do parts again. After laying for 2 hours and 40 minutes I was tilted upwards, and immediately my heart rate began to drop. It was the worst dizziness I have ever felt to this day. I have never actually fainted or passed out, but this is the closest I have come to it. By that point my vision was closing in, and I was crying and shaking not knowing what to do. I could barely hear or see anything, and I felt like I was in a dream. A tilt table test ends when the patient passes out or when they can’t take it anymore. Saying I couldn’t take it anymore would be an understatement. I was half conscious when they finally lowered me back down, and I started to feel a little more normal when I heard the doctor talking rudely to my mom about how I was anorexic and that she needed to make me eat. I couldn’t believe what he was saying.
Mid-december we had a follow up appointment with the doctor that had recommended a therapist. We were only going to this appointment because she had the results to the tilt table test and could tell us what was wrong. A couple appointments ago, with the same doctor, my mom had mentioned dysautonomia which she had read about, but the doctor said “No that can’t be right, she doesn’t have that.” Now here we were being told that I might in fact have a form of dysautonomia. As soon as the doctor left the room my mom yelled “I knew it!” Frightened by her excitement, I had no idea what dysautonomia even was and had only heard the word once or twice. Little did I know that my mom had been staying up late every night googling dysautonomia and trying to find out what was wrong. We were making progress, little by little, day by day.
Now that we knew I had dysautonomia we knew we had to find some way to treat it. There aren’t doctors that just specifically specialize in dysautonomia, so we knew we were going to have to think a little harder. A friend of my mom’s used to work at the Mayo Clinic so we thought we’d give it a try. We immediately scheduled a visit and got in early January. As January rolled around, we packed up and left for the Mayo clinic. The night we left I cried sad to leave my brother, sister, dad, and two kitties. At this point, I hardly understood what dysautonomia was. My mom tried to explain it to me as simple as possible, but there was so much information being thrown at me I couldn’t keep it all straight. We arrived in Minnesota that night, and when we got to the hotel I had a huge amount of anxiety. I was crying and worrying, thinking I was going to die. It was the first time I asked my mom if I was going to die and if these people were going to be able to help us. She replied with “You’re going to be ok”, but I could tell from the look on her face that she wasn’t completely sure what was going to happen. The next day we met with a doctor who gave us a schedule with the lists and times of what tests I was going to have done, appointments, and talks with different groups and doctors. We were immediately impressed with how organized and had high hopes. The next week was filled with all kinds of tests and more. I felt like I was a guinea pig in a lab, frightened and confused. I had multiple blood tests, another tilt table test, a weird test where I rode a bike with breathing tubes, an EKG, and many x-rays. In the end it was confirmed that I did indeed have dysautonomia and more specifically POTS. They said I was also deconditioned and I would grow out of the POTS as I got older. At the time, I had no clue what deconditioned meant, but I soon learned that it meant someone who had not been exercising or doing any activity really. Athlough this seemed like a logical explanation, I knew it wasn’t true. All my life I have been the kid who can’t sit still in class, and being a swimmer my whole life, it just wasn’t adding up. They said I would be able to fix these issues by exercising vigoriously for at least 30 minutes everyday. No big deal, unless you have POTS. They also wanted me to see a therapist for my anxiety. All in all, the Mayo Clinic was a large disappointment to both me and my mom. All we could do now was give exercising a try and add more salt to my diet.
Our goal for exercising was to start with 15 minutes and add a minute every other day until we reached 30 minutes. To be honest, I was kind of excited, we bought a stationary bike and I was pretty ready to start feeling better. The first two minutes of my exercising program went pretty well, but as the time went on I became extremely fatigued and exhausted. By the time I was done I felt like I had just ran a marathon. And most times I didn't last more than 10 minutes doing light exercise. We soon discovered that I was suffering from fatigue that is common with POTS. I was no longer energetic and spent a lot of time lying on the couch or resting - trying to get rid of my nausea that got worse with exercise. I got into a routine of barely crawling out of bed, going to school, coming home exhausted, and then becoming even more exhausted from trying to exercise, then I would quick do my homework and crawl back into bed. I had a lot of trouble falling asleep, because of POTS. Every day was like a new nightmare, I was afraid for what obstacles the next day had to offer. I started to question whether or not I would make it through the 7th grade. I started to always feel sad and tired. I went from the kid who could barely sit still to the one who could barely stay awake during the day. I faked smiles at school, and pretended to act normal. Nobody even knew what was going on with except for the fact that I drank a lot of water. I tried to explain it to some of my friends but they all responded with “Well you look fine to me.” To you I looked fine, but did anyone even know how I was feeling? This was when my mom thought it would be a good idea to start seeing a therapist. She pulled out one of the numbers a doctor had given us, and dialed the number.
For my first therapist appointment I was deathly scared. I didn’t want to go and my mom literally dragged me into to the car saying this was going to help. We arrived at what I thought was a creepy building surrounded by empty shops. This made my anxiety 100x worse. We then took an elevator up to a stuffy office with no windows, which continued to freak me out. I felt like I was crazy, I just wanted to be normal but here I was anxious as could be. We met with a therapist, and from first impression she seemed pretty nice. We started to see her once a week, and even though I knew she might be able to help us, I dreaded meeting with her. She would tell my mom I was acting out on purpose and that I was manipulating her. I was blown away that she would say something like that and felt betrayed. I immediately felt a disliking for her and refused to see her again. We continued to go for another couple of months, but every time after I saw her I felt awful, she made me feel like I was the cause of my mom’s and family’s stress. I felt more and more anxious, my tics got worse, and I eventually convinced my mom to take a break from seeing her. She was a nice lady, but just wasn’t the right fit for us.
After trying to find solutions to my other symptoms and not being successful, we decided to find a new doctor. We came across two doctors that worked together that could help my two biggest symptoms, dizziness and stomach issues. I was prescribed a migraine medicine that would help with stomach issues, migraines, and inflammation, all symptoms which I was experiencing. I was put on the medication right away . I started to eat better, but the medicine itself caused weight gain and drowsiness or fatigue. I ended up gaining about 10 pounds in two weeks. I was almost 30 pounds under weight, so it was good for me to gain a little, but I became self conscious and wanted to be taken off the medication as soon as possible. It also made me feel so fatigued, more than I had before, I could barely drag myself out of bed each morning and could no longer make it through the small gains I had made with exercise. After two weeks of trying it, and no return calls from the prescribing doctor when my Mom had questions, she said I could stop taking it. I was to the point of giving up, but my mom, well she had a different plan.
My mom started googling for more information about POTS. She came across a website called Dysautonomia International, and found out about the founder, Lauren Stiles. Lauren also has POTS and another type of dysautonomia called Sjogren’s. The website was so informational we learned that Sjogren’s was a type of dysautonomia and realized that my great grandma had Sjogren’s. We were so thankful to come across her website and even got a chance to talk to her. From the website we also learned there was a Dysautonomia International conference later that summer in Washington D.C.
In the middle of July we packed up our stuff and got ready to go. I was also very excited, not just for the conference, but for the fact that my dad was also tagging along, and that we were going to get to do some sightseeing in D.C. We arrived in D.C. and from the moment I got off the plane I started to feel sick. It was almost 100 degrees outside and my nausea started to kick in. People with dysautonomia and POTS have trouble regulating body tempurature and heat is not good. I didn’t want to let anyone else down so I kept my feelings to myself. As we got walking though, I started to feel dizzy and my joints also started to hurt. We got to see the Lincoln memorial, Washington monument, and the White House before I started to de-energize. We then got in the car and began our 45 minute drive to the conference. The conference lasted 3 days in total and had many different talks you could pick and choose to go to. We went to all kinds of informational talks and learned all kinds of new things. The conference was very helpful and I highly recommend it to anyone who has dysautonomia. We also got to meet Lauren in person, and on Saturday night there was a dinner with dancing, music, and an auction.
During the dysautonomia conference we learned a lot about something called Ehlers-Danlos Syndrome, and it was a high possibility that I had that, too. We had heard about it once or twice before the conference, but after the conference we decided to make an appointment to find out if I had it for sure. Fortunately I have the hypermobility type that is quite common to have with POTS. I just have to be careful with my joints and making sure I don’t hyper-extend them. Other than that I just think of it as a party trick. There are other types of Ehlers-Danlos that deal with your heart which are a lot more serious and even deadly. Now that we had figured out the Ehlers-Danlos piece of my dysautonomia, it was time to get back to the POTS part.
In October we planned a trip to meet with a doctor and talked about being part of a study we had learned about at the dysautonomia conference. I had all kinds of blood tests done and more, now all we could do was wait for the results. We also talked about something called an IVIG treatment, that Lauren also did and how that was what got her through her everyday life. IVIG is made by taking healthy antibodies out of people’s blood. It’s then mixed to make a bad antibody fighting serum.
While waiting for the results from my blood tests, we decided to think of a way to raise awareness for POTS and dysautonomia. October is Dysautonomia awareness month, and during school conferences, I got a bunch of my friends to help me raise awareness by selling popcorn for POTS. We ended up making over 150 dollars within a couple of hours and raised lots of awareness. Before this event, my mom and I also made a video explaining POTS and what it was like to have POTS. When we were selling popcorn, we told our customers about the video and it now has over 2,000 views. We also made awareness ribbon bracelets that I gave to my sister’s college swim team with another girl who has POTS on the team. After a lot of people saw my video, they started to understand what my condition was like and we also got many calls and emails about others having symptoms just like I did. It felt great helping others figure out what was wrong so they didn’t have to go through the stresses I did.
After my POTS for popcorn, we finally heard I could be a part of the study, so we took the next step to success, IVIG. We talked with the doctor in the study and scheduled my first IVIG for the beginning of December. Finally a year and a half into this nightmare we were beginning some effective treatment. I was so relieved to find out that this could fix everything and I could get my life back. I was also scared out of my mind after hearing the horror stories of IVIG including extreme migraines and nausea. But at this point I was willing to do whatever it takes to get my life back. The day of my IVIG I once again had to leave my family and cut Thanksgiving break short. I cried almost the whole plane ride there. My mom gave me a bunch of letters and gifts my friends had sent along with her. I also got a necklace that said guardian angel on it from my grandma; this was one of the big things that kept me going. I still wear it at each of my IVIG appointments. We went back to the researcher’s hospital and got ready to begin. I got all hooked up and everything was going smoothly until I was given Benadryl. I was given a rather high dose and had suddenly felt funny. I was so dizzy and light-headed I felt like I was in a dream. Then the nausea showed up. It came over me and I couldn’t take it anymore. I threw up and then felt knocked out. I don’t even remember anything after that. The next thing I knew I woke up around midnight (we started the IVIG around 7) with a cute stuffed animal dog with a dysautonomia shirt. My mom told me we had started the IVIG and that I was doing a lot better than before.
Exhausted, I drifted back to sleep, and at 7 the next morning we had finished my first ever IVIG treatment. I realized that this wasn’t that bad and that I was going to make it. I had high hopes and we got on the next flight back to Milwaukee, feeling confident - that was until my pain medicine wore off...