Salt, socks, and heart beats

I know I promised a post about the new treatment I tried…be patient, I have another appointment this weekend and maybe I will write after that. One session just isn’t a very good gauge of how it helps.

For now, however, I have big news…I have (another) new diagnosis. Ready for this one? 

Brady Tachy Syndrome. 

Weird name, I know. 

Anyway, it means that the electrical system that tells my heart when to beat is fried, and therefore my heart is just doing all kinds of weird things. It speeds up, it sloooooows way down, it skips beats, and the top half likes to be impatient and beat before the bottom half is ready. 

I told you it was weird. 

 

So I got a crash course in how to read an EKG from the doctor today, so I’ll pass on to you the bits of info that stuck…just because I think seeing the EKGs really makes it evident what I am talking about. 

 Image

 

Where that arrow is is where my heart SHOULD have had a beat, but didn’t. 

 

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See up at the top left there? It says “bradycardia: 40 BPM, duration 12.4 seconds”…that means that my heart was only beating 40 beats per minute, that’s badI was sleeping, so it should be lower than normal, but not THAT low. Much lower than 40 and you’re talking about not waking up in the morning! 

Now check out this one!…

 

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That says that my heart rate got up to 156 at one point! And look at the difference between these lines and the last ones! (Now, it is NORMAL that the lines go up and down like hills, the doctor said that is because something pulled on the EKG lead stuck to me…but how squiggly and irregular those lines are is NOT normal!) Not to mention 156 BPM is not normal either! 

 

 

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THAT arrow shows a “ventricular ectopy”…which is defined as Ectopic heartbeats are small changes in an otherwise normal heartbeat that lead to extra or skipped heartbeats…

  • Premature ventricular contractions (PVC)
  • Premature atrial contractions (PAC)”

That’s what I meant when I said that the top part of my heart likes to get impatient and beat before the bottom half is ready.

 

So what all of that means is that 

a) I am developing A-fib (atrial fibrillation- a type of arrhythmia that leads to the heart “quivering” as opposed to beating”). This does not surprise me, since my dad has been diagnosed with a-fib.

b) It most likely explains some of my fatigue because it is very stressful to the body to have the heart doing all of these crazy things.

c) It is very possible that this is keeping me from getting restful sleep, because my heart rate drops so low while I’m sleeping, and then the body over compensates and raises it again…preventing me from staying in REM sleep (when you really get rested).

d) I need a beta blocker (blood pressure medication) to lower my heart rate, but I can’t take one because then my heart rate will go TOO low! Like it could go SO low that it would stop in my sleep! (During this test there were a couple of times where my heart did stop beating, once for 3.4 seconds and once for 4.5 seconds…and I wasn’t on any blood pressure medication!).

So what IS there to do about it?

A pacemaker. Yep, at age 25. 

 

That freaked me out at first, like a lot, but I’m coming to terms with it. The doctor said I do not have to rush, I can chose to have the surgery now or try to wait a few months…but when it comes down to it I will inevitably need it done.

The fact is that I believe that my body will not be able to heal from the Lyme and everything else I have going on while it is working overtime to deal with my heart acting up. Plus, I feel like crap, and this has the potential to really help me feel better. The doctor also said that this will inevitably get worse, and there could be seriously negative outcomes when that happens. 

My LLMD feels that it will get better once I treat the lyme disease, but I disagree, as so does my cardiologist. The cardiologist insists that I would have developed these issues regardless of whether or not I had lyme disease, that just may have sped up the process (since I am a little young to have this condition). So the question is then, do I wait and see if it gets better with lyme treatment, feeling shitty the entire time? Or do I go ahead and have the surgery, to hopefully give my body (and myself) a break from all this nonsense so I can get better?

I did find as I was researching a little that it is possible to have the pacemaker removed later on if I no longer need it…so that makes me feel a lot better about the whole thing. 

Still, it’s such a dilemma. 

I will say this…right now I am definitely leaning towards surgery sooner rather than later. 

 

The other info that came out of this appointment is that the large, essential veins in my legs are “stretched out”…meaning that my blood likes to go down to my feet and not be able to come back up. This makes my legs hurt and feel heavy, my feet turn all shades of blue/purple, and is probably the reason I passed out during my tilt table test. So because of this, I am now doomed to the infamous compression stockings every day for eternity…since there is nothing that can be done to repair the veins or relieve this problem. Yet another thing that makes me feel like shit, and will continue to get worse and worse as my life goes on with no hope of relief. My sole hope lies in some really tight pantyhose and being able to consume as much salt and water as is humanly possible.

I’m doomed

13 Comments

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13 responses to “Salt, socks, and heart beats

  1. Heck !! At least you now have something to work on ! You are becoming quite a collector of medical conditions Addie Marie ! It must be scary for you ! I’m scared for you my friend ! Big hug. Ralph xox ❤

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  2. lymeandtherealworld

    Have you ever heard of Postural Orthostatic Tachycardia Syndrome? It sounds very similar to what you have. It’s when your heart is all out of whack along with your blood pressure. It causes your blood to “pool” in different areas of your body (i.e. your legs & stomach). It was discovered around 1993 so many doctors aren’t up to date with it, however it is a direct cause from Lyme Disease and most LLMD’s know about it. I have POTS and my heart beats in all sorts of funny ways as well, of course not as bad as yours, but it is still bothersome because I am younger than you are. I think it’s worth giving a look at though… Here’s a link, I hope it helps a little!

    http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome

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    • Yes! I have read a lot about that and my LLMD diagnosed me with it…but my cardiologist feels that this is a separate issue, especially given my family history. Thanks for the tip though 🙂

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      • Lyme & The Real World

        Anytime! Just figured I would share some knowledge lol. Good luck with everything!

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      • Yeah POTS both intrigues and confuses me lol. I will have to read that link later, not sure if it’s one I’ve read before or not. I definitely meet the criteria for diagnosis.

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      • Lyme & The Real World

        Same! Coincidentally I have a friend I went to high school with who has it as well. Her blood pools to her legs and they turn a dark purple. It’s crazy what it can do to your body. It confuses me as well. I just wish they had better treatment for it besides beta blockers.

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      • Me too 😦 I expected that that was why I have blood pooling, and it probably is…but most peoples blood pooling happens I’m the superficial veins, but since mine is in the big deep veins there’s nothing they can do about it. :(.

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      • Lyme & The Real World

        Ugh that’s terrible :/ I feel bad for anyone who has to go through that. I hope it gets better and I hope they find some type of alternative for you. In the meantime just try and stay positive.

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      • Thanks 🙂 I’m ok. It freaks me out a little…but it would scare me if it didn’t! But I’ll be ok, I always am! 🙂

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  3. Pingback: My poor “broken” heart | Chronically Me

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