A New Start

     So, Tiffany sent the calendars for the Pre-Month workout programs. I started yesterday with cardio and it was much easier! BTW I'm starting on Pre-Month 2 rather than Pre-Month 1 because I was able to make it through the first week of the regular months, but then I couldn't go any farther. I'm so glad I got the Pre-Month program! I don't know what I would do without it!
     Even though it is easier, I still had a hard time. By the end of the 5 minute increments of the Base Pace, I was beginning to feel faint. So, thank God for those 2 minute recoveries in between!
     Today, I did my weight training like normal, but I've decided not to increase any of the weights on the machines until I see my orthopedist because I'm worried I'm doing damage to my cartilage. This morning I squatted down to pick something up, but I had to get my dad to help me up because I couldn't stand up because the pain in my knees was so bad! Hopefully my doctor can do something about that! 

Time for an Update

     So, pretty much the past week I haven't done any workouts. I know I'm supposed to feel worse during the first month, but I'm feeling REALLY worse. Worse to the point where if I do my workouts, I feel I'll pass out. But, Angie (a girl with POTS who has been e-mailing me) said that she is in a pre-month workout. I had no idea what that meant, so her mom e-mailed me and explained what it was. Apparently you use the pre-month workouts to gradually prepare you for the actual months of workouts. So, since we had no idea there was such a thing as a pre-month, my mom e-mailed Tiffany and we're waiting to hear back from her.
     I've decided to not do any workouts until I hear from Tiffany and my orthopedist, because 1) I'm worried I jumped into the harder workouts too fast and actually did damage, so I want some time for my body to recover and 2) I'm worried I'm doing damage to my joints by doing exercise and I want to make sure I'm not by seeing my orthopedist.
     I'm trying to keep a positive attitude though! I try to keep myself busy with watching youtube videos or doing schoolwork (but some days my brain is so foggy I can't do any school work at all...). 

So Stressful!

So, once again, today I tried to do my cardio workout, but I just couldn't make it through. I know I've mentioned before my Erlos Dahnlos Sydrome which affects the cartilage in my joints. I've noticed that every time I go to work out, my joints hurt worse and worse! The different machines at the gym hurt whichever joint is moving the machine, and when I do the recumbent bike, my knees hurt (they're my worst joints). So, we have scheduled an appointment with my orthopedist. I've been to him before because when I was younger, my back would hurt a lot. We went to him and he gave me x-rays and found that I had scoliosis, kyphosis, and spondelolisthesis. (I know those words probably don't make any sense...) Luckily, I've grown out of my scoliosis and kyphosis but, he says that I won't grow out of my spondelolisthesis (two of my lower vertebrae are misaligned, but it isn't too bad). Anyway, we're gonna go to him and see what we should do. My dad mentioned actually going to see Dr. Levine in Texas, but I'm not sure what's going to happen. I'm stressed that I won't be able to complete my workout program because of my Erlos Dahnlos....And if my doctor tells me I can't, I don't know what I'm going to do....Sorry, I just had to give a little bit of a rant there...

Day 26 of Exercise Study

     So, I've had a pretty bad week. Like I said, on Tuesday I couldn't do my weight training because I got like no sleep and couldn't eat because of my reflux. Then on Wednesday, I went to my doctor and heard some news that I didn't really want to hear, even though I knew it was coming. Plus, it was a rainy, dreary day and that made it worse. So, (on Wednesday) when I tried to do my cardio workout, I just couldn't do it. I tried though!
     Yesterday, I went to the gym to do my weight training and I actually made it through! But, I noticed that my Erlos Dahnlos Syndrome (means my cartilage is really flexible and easily damaged) was making my joints hurt on some of the machines. Like the legpress, that hurts my knees, and the calf extension hurts my ankles, and so on....
     Anyway, today. I got on the bike (we have a Recumbent Bike at home) and I was able to make it through, but I was extremely tired afterwards. Usually my fatigue doesn't hit me until about a half hour later, but I felt it immediately afterwards today. And, it hasn't really left. I'm really tired as I write this, and once I'm done, I'll probably go lie down to watch T.V. and rest.  

Day 23 of Exercise Study: Sort of...

     So, today I was supposed to go to the gym for weight training, but I just couldn't do it today. Last night I didn't fall asleep until 7:00. A.M. In the morning...I don't know what it was, but I just could not fall asleep! Even with my 15mg of Melatonin, 3 capsules of Valarian Root, and chamomile tea. So, by the time I did fall asleep, I was only able to sleep for about 5 hours (I woke up at 12:00). When I woke up I noticed that my acid reflux was acting up really bad and I couldn't make myself eat (if I did, I knew I would throw up). Even though I couldn't eat, and I didn't sleep much, I still really wanted to try to go to the gym. So, I got up, got dressed, and stretched to go to the gym. While we were in the car on our way, my stomach started hurting, I started having a hot flash, and I started to feel really fatigued. I just knew I couldn't do it, so we turned around and went home. (which actually turned out good, because a few minutes after we got home, my tutor showed up, and if I had been at the gym, we would've missed her...)
     I do plan to pick up with my cardio workout tomorrow though. I figured it wouldn't hurt to miss one day of weight training because I haven't missed one workout yet....
    

Day 22 of Exercise Study

     The other day, I had a lot of trouble completing my cardio workout. So, we called the office in Dallas, and they told me that I should back up to the first week and re-do my first 3 weeks. I'm doing this so that when my exercises become longer and harder, I will be strong enough to do them. Even though today is my 22 day of the program, I'm working on my first week (again).
     Today I did the Recumbent Bike. It wasn't super easy like it was a few days ago, but it definitely wan't as hard as the first day was. I had a few times where I would feel really sick for a minute or two, but then it would go away. My legs were also burning a little more than they were the other day even though I had the same amount of resistance on the bike.
     I definitely like weight training better than cardio. It's easier for me and it doesn't take as long. I almost kind of enjoy it (:
     

Dr. Levine's Exercise Study

     I am currently in a study for a supposed cure for POTS. It is being conducted out of the Institute for Exercise & Environmental Medicine in Dallas, Texas. If you are interested in becoming a part of the study you can e-mail Tiffany VanGundy, Senior Research Associate, at THRIEEMPOTSRegistry@TexasHealth.org.
     The exercise program was first used on astronauts when they came back from space, because their bodies would also have trouble re-adjusting to pumping their blood in gravity. The program was used to increase the muscle tone in their legs to help pump the blood to their brains more efficiently. And, the best part is, you won't have to take any medicine!
     Before becoming a part of the program, the hospital in Dallas will send the information to your doctor about a 10 minute standing test where he will measure your heart rate and blood pressure standing and lying down. Then your doctor can send in those results back to the hospital in Dallas and they will make sure you fit the criteria for the study. If you do, they will then send the information of the study to your doctor and you can begin the program! (p.s. you won't actually have to travel to Dallas to become a part of the program, you can do it all from where you live)
     It is a three month long program, and ,by the end of the program, most of the patients in the study can barely be classified as having POTS anymore. Becoming a part of the study is a big commitment, though, because you aren't just doing this for yourself, you are doing it for the research to help future POTS patients.
    The program consists of exercises done sitting down, but as you get stronger, you move to exercising standing up. Workouts consist of cardio about 3 days a week, and weight training about 2. Once you become a part of the program, they will tell you what machines to use at the gym and what exercises to do for cardio workouts. They will also tell you what your desired heart rate zones should be for when you do cardio. (You will have to buy a heart rate monitor for these workouts.)

Tips for Living with POTS

So, here, I will show you some tips for living with POTS. Some of these tips are from doctors and some are from my personal experience. A lot of these tips have to do with being at home, if your symptoms aren't bad enough to keep you at home, then some of these tips don't apply to you.

1. High Salt and Water Diet: It is important to be on a high salt diet. Try to get in 10,000 mg of sodium everyday. I know that 10,000 mg is a lot and it's hard to get in that much everyday. Just remember 10,000 mg is a goal, not a requirement. Just try to write down everything you eat and how much sodium is in it so you can keep track of how much salt you get in. Next you need to try and drink about 3 liters of water everyday. The high salt and water diet will help increase your blood volume. By doing this, it makes it easier for your body to pump the blood to your head when you stand up. 
2. Light Exercise: A little bit of exercise everyday is good, but always remember to begin with all of your exercises sitting down. (i.e. recumbent bike or swimming). Exercise will help to tone the muscles in your legs thus making it easier for them to pump the blood to your head. 
3. Lift the Head of your Bed: You should also try to tilt the head of your bed up by 6 inches. By doing this your body will be on a downward slope while you sleep giving your legs some "practice" at pumping your blood at an angle. This helps them get toned to pump blood when you stand up during the day. 
4. Natural Sleeping Supplements: When you have POTS, it is very common to have trouble sleeping. I (and my doctors) suggest that you should try some natural sleeping supplements. I really like Melatonin. Melatonin is actually a natural chemical that your brain makes to make you sleepy. You can get melatonin in a tablet or capsule form. Another supplement would be, Valarian Root. Valarian root helps to calm and relax you. You can find it in a capsule form. Also, you can open up the capsule and dump it into some tea if you would rather take it that way. I've also found it helpful to take a Valarian Root capsule if I'm having an anxiety attack to help calm my nerves. If you are having real problems sleeping, you can also take some Benadryl as needed. 
5. Do NOT use salt tablets: I know that it can be hard to get in a lot salt, but DON'T use salt tabs. Because they contain so much sodium in one place, it will draw the water in your body to your stomach when you take them. When it draws the water to your stomach, it dehydrates your body which is the complete opposite of what we want!
6. Give yourself a schedule: I know that if you are bedridden (like me), it can be very hard just to get up in the morning. But, you should try to give yourself a schedule. Try waking up at a certain time every day, and going to bed at a certain time. When you give yourself a schedule it can help keep you from lying around in bed all day (which we definitely don't want!). 
7. ALWAYS stay positive! I know that when your bedridden and you have a syndrome that not many people understand, it can kind of get you down in the dumps. Just remember that you're not crazy and that one day you'll grow out of this! Also know that you're not alone! It may seem like you're the only one with this syndrome, but there are thousands of people just like you, fighting your same battles!

My Journey with POTS

      So right now, I'm going to tell you about my journey through the discovery of my POTS. I will tell the long version first, but you can scroll to the bottom for a summarized version.
     Before I get started, let me tell you a little bit of useful background info. For years before I discovered I had POTS, I would have lots of trouble eating solid foods in the morning. I felt like if I did, I would throw up, so we learned that I could drink protein shakes in the morning to at least get a little bit of substance into my body. I'm also very tall. (FYI)
     It all started at Band Camp. (I know, you're probably thinking, "One time, at band camp...") And before your start making assumptions about band camp, let me tell you a little bit about it. It lasts 8 hours a day for 2 weeks. We do push-ups, sit-ups, laps, and plenty of other exercises/punishments. Band camp is no joke. It's way harder than Cheer camp or Dance camp (I've been to both and if you've been you know what I'm talking about). Plus, I was on color guard (you know, the flag twirlers), so we worked like 3 times harder than the other band students.(we we're also out in the sun while the other band students were under a giant covered area with HUMONGOUS fans blowing on them..)
     Now into the good part. The first day of band camp, I woke up and drank my protein shake like usual. But, it didn't settle well with my stomach and I threw up. I sort up brushed it off, and went ahead to band camp. I also noticed I was more nervous than I should've been, but once again, I brushed it off. Once at camp, I almost passed out for no explained reason. My teachers told me that I probably was just nervous and I should just get through the day. This scenario played out for the rest of the 2 weeks. During this time, I also went to see my normal doctor and she told me that I was dehydrated and I just needed to drink lots of water. I barely made it through band camp, but I pushed through the nausea, dizziness, and anxiety.
    After band camp, there was about 2 weeks left until school. During those 2 weeks I seemed to get better, but on the first day of school, everything came back. I got sick and had to go home. For the next few weeks I woke up every morning and tried to go to school, but I never felt good enough to go. By this time, we started to get really worried, so we got appointments with every type of doctor we could think of. First off, was a GI doctor. She gave me an upper GI scope and found that I had acid reflux, which explained the throwing up in the mornings. For this, she gave me some Prevacid which helped a lot!
    Next up, was the Neurologist. He suspected I had POTS and put me on a high salt and water diet. He also put me on Florinef (which helps your body retain more salt) and Mestinon (which helps the blood vessels in your legs constrict when you stand). The Florinef didn't really seem to help, but I had a really bad reaction to the Mestinon. Every time I would take it, I would get really bad stomach cramps and nausea. So, eventually I stopped taking it.
     Because my Neurologist never actually gave us a firm diagnosis of POTS, we scheduled appointments with an Endocrinologist and a Geneticist. They both gave me some blood tests that came back normal. By this time I began to think I was crazy because none of the medicines were working and all the tests came up negative.
    We then began to wonder why my Neurologist never gave me a tilt table test. (a test that confirms whether or not you have POTS). After that we began having some problems with this doctor, so we switched neurologists. This time we got the tilt table test and a confirmation of POTS. Which was good, because now we had a diagnosis, but bad because there really isn't a known cure (plus all of that running around to a geneticist and endocrinologist was for nothing).
     By now, I had missed a lot of school, so my doctor wrote a letter to my school requesting me to be labeled as Home Bound. This means that the school knows I am missing for medical reasons and I won't be penalized for my absences. The school also began to send a teacher over to my house a few days a week to bring me new work and take back my completed work. The home bound program is good for me because I am on the exact same curriculum as my classmates, so if I can go back to school, I will be on the same page as them.
    So while I was trying to catch up with my schoolwork, my mom was doing some research on the internet for information on POTS. She came across a blog (which I will link here) about a woman with POTS who is in a study for an exercise program. There should be another tab at the top of the page where you can go to learn more about the study, or you can go to the blog I mentioned earlier. My mom did some more research and ended up getting me into the study.
     Which, brings us to now, be working on the exercise program and trying to get caught up in my schoolwork (still!). You can follow this blog to receive updates on my progress!

SUMMARIZED VERSION  

     I began having symptoms of nausea, dizziness, and anxiety at band camp. I struggled through band camp, but by the time school started, I couldn't take it anymore. My doctor wrote a letter to my school getting me into the Home Bound program so I could get caught up with my schoolwork without being penalized for my absences. Then, we got an appointment with a GI doctor and she gave me an upper GI scope and found that I had acid reflux. Next we went to see a Neurologist and he suspected I had POTS, but it wasn't confirmed until a few months later when he issued a tilt table test for me.
        Once I was diagnosed with POTS we were kind of at a loss for what to do since none of the medicines that my doctor gave me were making much of a difference. My mom was doing some research on the internet and found a study for an exercise program on this blog. She did a little more research and got me into the study.
     That brings us to today. Me, working on the exercise program and trying to catch up with my school work (still!). So, follow my blog for regular updates on how I'm progressing with my exercise program!
  

What is P.O.T.S.?

P.O.T.S. stands for Postural Orthostatic Tachycardia Syndrome. What this means is that, when you stand up, the blood vessels in your legs don't constrict properly resulting in lack of required blood flow to your brain. Your heart will also begin to race ,upon standing, in order to compensate for the vessels in your legs not constricting. This can make you feel dizzy, light headed, or you might even pass out (which I personally have never done).


Symptoms of P.O.T.S. include:

• Fainting
• Dizzyness upon standing
• Light headedness
• Extreme fatigue
• Lack of concentration
• Brain fog
• Anxiety
• Hot flashes 
• Weakness
• Problems Sleeping
• Exercise Intolerance 
• Chest Pain
• Cold Extremities
• Fatigue after eating
• Many Gastrointestinal issues such as: acid reflux, vomiting, nausea, constipation, etc.....
• Depression 

     If you have POTS, you may not have all of the symptoms listed above, but you may have symptoms not mentioned in this list as well. Every POTS case is different from another. POTS is a dysautonomia. Your dysautonomic nervous system controls everything that you don't have to think about, like breathing, blood pressure, digestion, etc. Because POTS is a dysautonomia and your dysautonomic nervous system controls many functions of you body, each POTS patient will have different symptoms.