Life with POTS… Isn’t Fun.

First, this is not a post about marijuana… this is about a chronic illness. I hate drugs, and they are pretty stupid to get involved in, anyway. So if you’re on it, do yourself and your family a favor, and get clean. But don’t get involved with it. T’will be easier.

So I figured I’d write a new post giving an update on how my life has been recently with the illness that I was diagnosed with in August, Postural Orthostatic Tachycardia Syndrome, or POTS for short, for my friends. Hopefully this will help them understand a bit better what it’s like right now and hopefully also encourage anybody else who comes across this who has this illness as well. 🙂

So, let me start with what exactly POTS is. Medical terminology explanation time!!! 😀

“Postural orthostatic” means my blood pressure changes when I go from a sitting-to-standing position, or any other change in position. This could cause me to black out, or possibly pass out (I have blacked out about four times, but I have not passed out… yet).
“Postural orthostatic tachycardia” means that not only does my blood pressure change, but my heart rate drastically speeds up as well. My normal heart rate for my age, weight, gender, etc. should be about 75-77bpm. However, folks who have POTS normally see their heart rate jump about 30+ beats, so now my normal heart rate is about 115-125bpm, the equivalent of my body running, except I’m not. I’m sitting down, or just standing up. You can see the problem with that…
“Postural Orthostatic Tachycardia Syndrome:” it’s a syndrome because it is a collection of lots of annoying things all thrown in together. Fun, eh?

So basically, my heart rate jumps and my blood pressure drops when I change positions. However, that isn’t all there is to it! Yay… (sarcasm completely intended). This is all caused because my ANS, the autonomic nervous system, is messed up. Everything controlled by it, from body temperature, to blood pressure, is now really wacky. It is called Dysautonomia, a dysfunction of the autonomic nervous system. Many things can be classified as a dysautonomia, and POTS is one of them.

Anyway, as you can imagine, my heart trying to run a non-existent race all the time is pretty tiring. And it is. But what about when it jumps to 199bpm when I go from sitting-to-standing? Yeah, scary.

Starting in November, peaking in December, and lasting into mid-January, my heart rate went wild. As a resting heart rate, it was anywhere from 150-180bpm. Then, when I stood up, it would jump up to 199bpm, several times. It’s actually a blessing because the doctor said that if it ever hit 200 exactly that I would need to be seen at the hospital. They said I was actually in danger of a heart attack! My blood pressure was also jumping from 130/85 to 160/100+, for example, which put me in danger of a stroke. I also was having a really bad dizziness. It was pretty much debilitating. The room just kept spinning, like when you come off of a ride at the state fair, except it wouldn’t stop. It made me very unstable on my feet. It was driving me insane…

The doctor was able to see me at the end of December, when I was taken off of the meds I was on, and again in January, when I was put on the meds I am on now. They think that one of the medicines I was on was actually causing the very high heart rate and the high blood pressure. Now, it was supposed to bring my blood pressure up some, so I guess it worked too well, and I also think it was also supposed to bring my heart rate down, when didn’t work at all.

So now I am on a beta-blocker and an anti-anxiety medicine, which both are helping to bring my heart rate back down. Laying down last night in bed, my heart rate was 85. Still high to be half-asleep, but hey, it’s a lot better than it has been! Of course, that was due to an accidental overdose on my anti-anxiety med, which I stress, was my fault.

My mother had given me the beta blocker, which I take twice a day, and I for some reason then went and grabbed the anti-anxiety med, which I take once a day, too… that is an example of the confusion folks with POTS have. We simply forget things, and sometimes sadly, as they’re happening. Yep. Not fun. I just gotta remember not to poke the sleeping black bear…

Which brings me to confusion and “brain fog.” Well, confusion speaks for itself. However, what is brain fog and what causes these things to happen? Well, it is when I am pretty much out of it. I go to Noah-land, and am not in touch with reality very good. It’s almost like I’ve been put on anesthetics, but not enough to make me go to sleep, just really loopy and drowsy. It’s like my mental realm isn’t working as it’s supposed to.

So why does it happen? Well, it happens for the same reason that I get really weak and can’t stand up sometimes. My blood vessels don’t work like they are supposed to anymore. Explanation time (again)!!!

Our blood vessels contract and expand when needed, and this is controlled by the ANS as well. Well, this contraction/expansion of my blood vessels doesn’t work like it used to anymore. Instead, when I stand up or change a position, my blood vessels will not expand as they are supposed to, in order to allow more blood to the muscles. Thus, the muscles in my legs become oxygen starved and tend to go out from under me. This has happened several times. Also, my arms will become very tingly, very weird feeling, such as the pins and needles feeling that you get in your feet when they fall asleep.

Some doctors think the brain fog is caused by the same thing, just that it is happening to the brain, and not the muscles. Which would make sense, because as the brain becomes slightly more starved for oxygen, then the brain function would slow down.

And as you can imagine, this does cause a lot of trouble with concentrating in school, remembering things, etc. It really is probably the biggest bother. To be honest, I’ve been so freakin’ tired and unable to concentrate on my homework that I will probably repeat this year in school. Which really throws a wrench in every single one of my plans. Bah, I’m getting mad just thinking about it, so I’m going to move on to a happier talking point…

Actually, come to think of it, there’s nothing “happy” about this. Oh well…

ANYWAYS… so my life recently has obviously changed. I went from running 1.25 miles a day, in normally under 15mins., to not really being able to walk a lot of the time without a cane. I sometimes end up in a wheelchair that we were graciously allowed to borrow from FBC. We’re looking for one to buy however, so we can return that one to let somebody else use it. 🙂

For those of you who saw me at the youth group Christmas party, yeah, well that was partly a good day, and partly me pushing myself. Trust me, I paid for it later that week. I was beyond tired by the time I left, and I immediately knew I shouldn’t have pushed myself like that. However, I take comfort in the fact that I now know that I can’t afford to do that. I have to listen to my body. When I’m tired, I need to sit down. And I need to be okay letting my friends see me like this.

I mean, on Chick-fil-a day, August 1, I was in a wheelchair, and some of my friends from a family I actually really respect saw me in it and came over to talk with me. I am grateful for that, but I still have other hurdles to get through. Ugh, I really need to get over my pride. It’s just hard! I was as physically active as I probably could get without getting officially registered into a sport or whatnot. And now I can’t get down my 20ft. hallway without a cane. My life went from an 8 to a 0. Fun, right?

But I digress. I need to get over myself. Stop feeling sorry for myself. There are a lot of other people in a lot worse situations than me. I mean, Noah Bacon almost died for heaven sakes, Noah!

Anyway, God is teaching me, and is breaking me into whatever that person is that He desires me to be. It hurts, but I need it. I know I do. I also know He is faithful, and He is holy. I have been trusting Him for His plan, to know whatever He is doing is for my ultimate good. But, it is hard.

However, I am really thankful for the friends who have stood by me in this. Thank you guys. I am thankful for you guys being awesome, and your encouraging words in all of this. Please, continue to pray for me. And since I have not much else to do, let me know how I can pray for you! Most of you have my email, and comment here and let me know if you don’t, and I’ll shoot you an email. 🙂 So let me know!

I hope this encouraged you somehow, and also gave you an insight to how my life has been recently. God bless. By the way, this stuff going on is why I haven’t really been posting recently. I’ll try to remedy that soon. 🙂

noah

2 thoughts on “Life with POTS… Isn’t Fun.

  1. Aww! Poor Noah! *pity pat*
    Anyway, pity party over. Noah, I have an important question: can I borrow your wheelchair?!? ;p
    *cue puppy eyes!*

  2. Noah, thank you for sharing your story. It has given me a much better understanding of what you and your family are dealing with. It has also given me a better perspective on my life. God bless!

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