The diagnosis that took 21 years....

Sick Sinus Syndrome.

Ok guys, it's finally occured. I have a difinitive diagnosis for one of my heart problems, that causes a huge trickle effect on the rest of my cardiovascular function.

I had a follow up with my Electrophysiologist (EP) today. She formally gave me a diagnosis of Sick Sinus Syndrome (SSS). It has a multitude of symptoms, and I have all of them, plus a few more.

My first event major event signaling a rhythm issue (I can't dance either) was in my freshman year of high school. I collapsed and fainted during gym class.

After years and years of frustration, a bit of angst, and hundreds of thousands of dollars in testing (these tests were invasive), my EP made a diagnosis and action plan, a pacemaker.....she is like Santa Claus to me.

I feel much better with my pacemaker. Yesterday I didn't feel as well, and I needed some reprogramming done and I feel better.

My heart is controlled by programs and algorithms now. I'll need a new pacer about every 5 years or so give or take. This doesn't solve all my heart problems, but helps with a significant problem.

Here's a quick reference to what SSS is.

Sick Sinus Syndrome

I had tons and tons of tests. Went through probably 50-60 docs from all over the spectrum including the best hospital systems in the U.S.--their names aren't even worth mentioning. Even had some boneheads try and call me nuts (well, I may be nuts, but I have scientific data that my heart's electrical system is wonky).

So, persistance does pay off if you don't die in the process. You can't select your jeans, I mean genes, so sometimes what you get handed isn't the best.

How SSS interacts with my central nervous system is still complicated, but its linked. My heart rate drops. The timing in between beats changes. The beats are not co-ordinated as well as they should. All of which causes blood flow problems. High vagal tone, Chrontropic Intollerance, Vasodepressor Syncope, Autonomic Dysfunction all are part, or contributing issues to this diagnosis.

And yes, I can most certainly link at least vascular headaches to SSS.

It's been about a month since the pacemaker has been placed. It moved a bit early on, but it is solidly in place. I have to be careful, but I don't have quite as much to worry about. I still have the other 3 heart problems to be concerned about, but at least one is looking to be (cross my fingers) treated at the moment.

21 years.....the mystery diagnoses shows on TV make me chuckle. Please don't take this as a brag--I'm not. There's a kind soul on this forum that's suffering horribly from syncope that I hope gets some relief like me. I don't know how long this will last--I guess until my body changes or something malfunctions.

After fighting so long, and having some results it is a very, very strange feeling that I'm not quite sure how to deal with yet.

Just my .02 cents. Thanks.

Marc, it was so interesting reading your post and I'm glad you are getting some relief now that you have a pacemaker. It's made me even more determined to figure out why I'm so bothered with my heart skipping, pounding, racing etc. I wore one of those holter monitors for two days a couple of weeks ago, saw my doctor yesterday and was told it was normal (of course my heart behaved while I was wearing it, typical!). My doctor said that because I am obviously very distressed about what's going on with my heart, he is going to refer me to a Cardiologist. It may take a year, the waiting is so long here in Canada. I have been put on a low dose of blood pressure medication as he said it was a little high (although when I check it at home, it's normal, go figure!).

I can hardly wait to see the Cardiologist. I'm still wondering if having Pulmonary Embolism (which I have) has something to do with my heart rythmns.

Take care Marc.

Wow, finally some answers Marc! I understand where you are not even sure how to feel. We are so accustomed to feeling horrible with no answers.

Glad the pace maker is working out for you. My moms is working great. No problems. I hope you find some relief both mentally and physically with this new find.

Blessings to you!

kimsmom

So glad you finally got some answers for at least one of your problems, Marc. Even feeling somewhat better has to be a great relief for you.

Wow.

That's a good news Marc.
At least a one solid piece of evidence to sink your teeth into, finally.
I truly hope this finding and resulting pacemaker will reduce the headaches.

Good for you for not giving in to the boneheads!

Risa

Wow. Really? After 21years of suffering you have Sick Sinus Syndrome? They couldn't come up with a more dramatic, sympathy inducing name than that? Someone got lazy.

Porsche, you now have Infirmus Cavus Causa. That sounds much more befitting your stature and the misery this has caused. You can thank me later. It has been a pleasure to correct this for you.


(P.S. I am SO happy you finally have answers and that the pacemaker is working so well. Brava!)

LOL Para, ICC sounds much more interesting. When I talk to someone about sick sinus syndrome, they ask how can a problem with my sinuses cause heart problems.....(smacks head).

I don't think it's going to play a major role in migraines. I've had it in for a month, and have just about the same amounts. As long as I take my other meds, my migraines are kept down to a bit of an annoying brain ache. If I don't take the other stuff, it's bad for my heart, and bad for the rest of my body.

The one thing the pacemaker helps is with heart rhythm. Since the programming adjustment, I feel a bit better. I'm feeling just a little dizzy if I stand up fast, but I don't pass out. So I think we might have it optimised.

I don't think there can be any reduction in the other heart meds. I need them for the other heart problems. But nevertheless we've made tremendous progress.

I had a ton of testing, a lot of risk, a ton of contrast dye, and a ton of radiation to actually rule out problems, when the obvious, a rhythm problem was at hand.

What's a big goofy is that I'm totally reliant of meds to stay alive and my battery powered wunder machine to keep things working right. that's not a comfortable feeling.

But hey, can't look a gift-horse in the mouth.

Cheers!

I can fix that too. Infirmus Commotio Cordus. I agree, let's get the cavus outta there.

How do you like that?

However, that does rather sound like a magic spell to be shouted as you wave your magic wand. Hmmm...you decide.


Hermione Granger aka Charlotte

para, LOL

i'm thinking more like UTC....

Up The Creek.

i took a nap this afternoon and woke up with my heart running about 100 beats per minute. the programming is sensing rate drop enough to kick it into high gear. i don't have rhythm.

But can you jump?