Hey everyone! I have some really exciting news — I got to try on wedding dresses today!!!! It killed me and right now I feel the worst I have felt in about a month, but I must say, it was worth it. If you want to see the top 2 contenders right now and put in your vote, text me and I will send you a picture!
On to the medical stuff… Today was a pretty awesome day because I got to hear some results.
I got a motor chair today!! They rent them out for $20.00 a day. I got yelled at by the old lady who mans the medical supply/convenience store for going too fast. She stood over me, refusing to walk away until I turned down the speed. You see, we already weren’t friends because she refused to take compression stockings out of the wrapping despite no seals or packaging needing broken for her to do so. Before forking over upwards of one hundred dollars, it seemed reasonable to want know how opaque or sheer they are. We found her refusal a little ridiculous and a debate ensued between her and my mother. That was the other day. Back to today. After scolding me, she moved on to scolding dad about how he is liable for anything that happens to the scooter. It clearly comes apart for transport, but she said he can do this at his own risk because he is LIABLE. We can put it in a car, but know, you are LIABLE. You can leave it outside the door of your appointment or restaurant, but you are LIABLE if it gets stolen. I wanted to be like “Hey, lady, are we liable for this scooter? I want to run you over and I am worried about repair costs.”
This wasn’t related to POTS, but was because I have tiny little nodules on my thyroid. This was all good news. He actually said I probably don’t have nodules, I probably have normal pits. He said women’s thyroids enlarge, stretch, and get pits with every menstrual cycle and pregnancy due to hormones. A lot of doctors think these pits are nodules, especially women with a familal history such as myself. They are actually normal and could be found on pretty much any woman you picked off the street. They are ultrasounding my thyroid tomorrow to be safe.
This guy knew so much about POTS, it was so uplifting!
He briefly went over all of my tests with me, and went more specifically into stuff to do with my heart. I am just going to tell you about the stuff I have details about today, and will give you the rest of the results tomorrow when I have more information. My EKG, echocardiogram, and holter monitor were perfect! This was great news because it means structurally and functionally, my heart is doing wonderful. The wiring is correct, just the “software” or how my body uses the wiring is messed up.
My pulse, as you all probably know, is VERY high. Today, just sitting there, it was 130 and when the doctor had me lie flat, it went down to 80. This is higher than it was on during the Tilt Table Test yesterday! This is part of what makes POTS so tiring. It is like your heart is constantly beating as fast as most people’s beat when they are running! It kind of gives you a panicy feeling, like you are running from something, and just is plain uncomfortable to experience all of the time. They can give me medicine to lower my heart rate. This might help me feel a little less tired all of the time. They doctor really emphasized the exercise regimen is one of the most important things for feeling less tired (more on this to come).
My blood pressure tends to be in the 90s on top and in the upper 50s/lower 60s on the bottom. He said this is detrimental to someone like me who nearly faints all of the time. You start feeling dizzy, nasueous, and lightheaded when your blood pressure gets in the 70s or 80s on top. I get something I call “flashes”. When I get one of these, the world temporarily goes black and my hearing is gone for a split second. This will happen dozens of times in a rapid succession. The technical term for this is near-syncope (sync-oh-pee).With such low blood pressure, I only have about 10 points to play with before the “flashes” start. They can give me medicine to raise my blood pressure. This will help because then my top number with be something like 120 or 130. This means I could drop 40 points, and still not become faint. Sounds good to me! The medicine will also keep the other medicine that slows down my heart from slowing down my heart to the point that it stops when I lye flat. This is just a treatment of the symptom, not the cause. They have no idea what causes people’s body to do this, so there is no treatment.
My sodium was low. This amazed me (it was about 1/3 of what it should have been) because I eat spoonfuls of salt everyday to increase my blood pressure! I just need to eat even more salt and this will be fixed.
The main point of this guy was to talk to me about what exercises I can do that won’t exaberate my symptoms, but will help me feel better. The stronger my muscles are, the more constricted my blood vessels will become. The more constricted my blood vessels are, the less blood can settle in my legs. Makes sense, right?
I could tell this guy dealt with POTS patients all of the time because he was very knowledgeable. My only constructive criticism is it felt like he gave this same speech to every patient. He was telling us things we already knew, which is to be expected, but did not change his presentation based on our previous experience, knowledge, or us showing understanding. He went into a 3 minute explanation of Pavlov’s dog and learning. At a break, I lightly mentioned I have my bachelor degree in Psychology and am familiar with learning theories. He kept right on going and finished his story of Pavlov’s experiment. Oh well though; we weren’t there to be entertained. Even considering all of the uncomfortable, tortuous tests I’ve had, I have to say this was the most major test of tolerance (next to that damn blood pressure cuff!!!).
On to more interesting stuff than my complaining…
He said doing traditional exercise would make me very sick. Not only is it stressful on my body due to the exercising itself, but my body is working against gravity to keep my blood from pooling. This makes exercising exhausting and dangerous.
So what exercise regimen did the doctor tell me to do? Basically, a horizontal exercise plan. He said anything I would normally do standing up, try and modify it to do it standing up. So instead of doing curls standing, do them lying down or at least sitting. Instead of going on a treadmill, go on a bicycle with my legs as level to the ground as possible. I ultimately will need a gym membership in order to be able to do this exercise plan.
I am going to now explain the exact regimen he told me to do so that anyone else with POTS can see what he recommended.
Aerobic Exercises: 2-3 times per week
- recumbent (level to the ground) cycle
- rowing machine
- phase in upright exercise, such as walking, once 30 minutes of this type of exercise is tolerated
The target heart rate range will be 128-133. Please make sure you consult your doctor if you are going to start exercising because your target heart rate range will be different based on your baseline rate. The good news is, he said your heart rate can go up to 220 and nothing bad will happen! On a scale of 1-20, the percieved exertion goal is 12-14. This is called the “somewhat hard” range and falls between “fairly light” and “hard”.
Strength Training: 2-3 times per week
- On a leg press machinedo leg presses, toe presses, leg curls, and leg extensions
- do 8-15 repitions (whatever in this range is best tolerated)
He said you can modify these to do them with resistance tubing and bands, but it won’t have the same impact as a machine does. The doctor recommended using a physical activity monitor in order to be aware of my activity level.
- Warm up 5 minutes at an easy pace.
- Starting out, exercise 5-10 minutes, whatever is tolerable. You don’t want to overdo it starting out because this will make you VERY sick.
- Your goal is to get up to 45 minutes of working out.
- Cool down for 5 minutes at an easy pace. You must do this. It is healthy for everyone to cool down, but especially crucial for people with POTS. Your blood pressure will rapidly drop (as it would for anyone), and this can make you more suspecptible to feeling symptomatic and even fainting.
This was the conclusion of my appointment. Even though I felt inpatient at times as a result of his in depth explanation of EVERYTHING, he was helpful. I had been wanting to exercise, but every time I would try, it would make me sick. Now I know exactly what to do and how to avoid becoming super sick. It is no P90X, but it’ll do!
After this, I decided to go crazy with exerting myself since I had the motor chair. We went out to eat and then to try on wedding dresses. I am now nauseous, dizzy, headache, and all kinds of other fun stuff.
Thanks for reading. I love reading everyone’s comments. I read them while I am waiting for appointments or when I get down in the dumps about all the negative results. I know that having tests show something is good because they can help me, but still is a little sad because I know they aren’t going to magically know what causes POTS!