Me, MS, heart block, pacemakers and the autonomic connection

[twopack]

Subtitled: Where I’ve been and what I’ve been doing.

I've been getting reacquainted with Winnie the Pooh and his friends lately and was reminded that, like Pooh Bear, most of my adventures are unplanned.

Pooh (a bear of very little brain)
Sometimes sailed toward an adventure
Or drifted safely away from one
By attaching himself to a colorful balloon
Capable of lifting him safely into prevailing air currents.
  
Pooh’s Grand Adventure
Brought him moments of trembling, trepidation and triumph.
I’ve been on a similar adventure of late.
Sadly, I had no balloon.
And that's why I decided to fly with one here.


A few months back I started having erratic heart rate and BP patterns - a repeat of similar events two years ago. My heart rate was dipping into the low 40s with minimal activity (sometimes even as I sat still) and when it did, all energy and strength drained from my body.  

I called a cardiologist I had seen just once (in 2010) and asked for a ‘follow-up’ appointment.  His first available was 6 weeks away.  I booked it and dragged myself through a second week of life with a heart rate stuck in the low 40s.  When it dipped into the 30s -and then 29 beats a minute - I headed to the ER and was propelled through triage straight into CCU with a diagnosis of second degree (Mobitz II) heart block.  

The electrical signal from the top of the heart wasn’t always getting through to the bottom part.  In fact, the two halves were sometimes orchestrating independent (less than effective) rhythms.  I had apparently been flirting with cardiac disaster for weeks.

When 48 hours of constant monitoring showed no improvement an EP cardiologist was consulted and the decision was made to implant a permanent dual chamber pacemaker.  It was done within hours.

**On to the question we always end up asking here.**
Is this connected to the MS?  IN MY CASE there is apparently A GOOD CHANCE MS CONTRIBUTED to this newest diagnosis.  

I’ve had a significant brain stem lesion on MRI and many of my symptoms over the years have involved organ functions heavily influenced by the autonomic nervous system via CNX (the Vagus).  My cardiologist noted (in writing even!), “One of the simplest explanations is that since multiple sclerosis involves the nervous system and can affect autonomic function, which has been well described, it is certainly possible that she has increased parasympathetic outflow, which may cause AV block.”  

I’ll tell you, I think that’s about as close as it gets to a direct affirmation and it isn’t very satisfying in the end.  It just means we need much more than the brake pedal we have to fight against MS.  We need a cure if we hope to stop the destruction.

It has taken many weeks for my body to adapt to this paced rate and to find drugs to manage additional rhythm and blood pressure problems.  My heart relies on the pacemaker to keep it in sync 78% of the time but I’m finally starting to see my energy and mental concentration return to MS normal - starting to.  I was evidently out of whack for quite a while and made incremental downward activity accommodations all along the way.  Regaining strength is so much harder than losing it.

I’m hoping cardiology will FINALLY release me back to work in the next week or two so I can get back to earning money instead of earning nothing while I pay out of pocket to keep benefits.

I know I left some of you in the lurch with questions unanswered and promises unfulfilled when I disappeared without explanation.  I sincerely apologize.  I’ll try to remedy what I can, as I can.  Please don’t hesitate to remind me by message or topic ‘bump’ if it seems I’ve forgotten you.  My time and energy remain limited but I’ll give it my best as I work to re-establish healthy rhythms in several areas of my life.

Thanks to all of you for doing such a great job helping each other and for stepping it up a little when life events render any member of the CL team less visible than usual.  We are PwMS too and sometimes our vulnerabilities refuse to be denied.  Each of us truly does need everyone else.

Having written this I'm only now remembering a piece of wise Pooh advice.  He said, “Thinking of Things, you find sometimes that a Thing which seemed very Thingish inside you is quite different when it gets out into the open and has other people looking at it.”

We shall see.

Thanks again.
Mary

[teenyturner]

I can't believe the coincidence of you writing about your experience just when I thought I was going mad!

I too have been having a severe bradycardia.  I've been coming into daycare every day this week and the nurses have been monitoring my pulse and BP.  My pulse has been hovering between 40 and 49.  I saw my doctor yesterday and told him about it and he just dismissed it as if it was trivial.

I have just weaned off Florinef for autonomic hypotension and now this crops up.

I have no intention of ignoring this and after hearing your story, I will pursue this through a hospital ED.

thanks sooo much for posting about your experience.  It's made me adamant that I will have this investigated.

Regards

Chirley

[rendean]

As always beautifully written and chock full of information!
Thank you for sharing your experience with us. I, too, have dips into the 40s and rates racing to 200...need to discuss this with my cardiologist next visit.

In the meantime, behave yourself, even though you're bored, no marathons or other activities  to test out your new ticker.

I hope you get your release to return to work soon.

Hugs,
Ren

[sllowe]

Mary!

You have such a way of describing some tale of woe with such humor, and joyful reading, but yet I learn so much too! How the heck you do that? Indeed sweet lady, you have not lost so much of what makes you  - you.

I hope your body begins to get in sync w/it's new equipment, and that you can feel well while you do what you do best :)  We learn so much from your posts. Your so right too when you say we here need each other.

Thank you for giving us a peek of what's been going on. Big cyber hugs to you!
-shell

[supermum_ms]

Hi Mary, i still love Winnie, i thought you were going to talk about falling down that darn rabbit hole, which you sorta did, again.

I always find it facinating how hard it is to know for sure if a pwMS is having heart issues because of autonomatic dysfunction or if its a seperate issue, but your guy called a spade a spade so now we know! Just a thought, have we ever done a poll on this, cant recall anything on heart rate but think there was something lol can't remember but it might be interesting to see just how many 'dx MSers' we have here that also have this issue too.

lol DH is looking over my shoulder and next thing i know he's sticking his iphone on my finger errr apparently sitting here i'm 71, DH's goes down to 45 but he's really fit. DH did it again whilst we were having dinner, i always say eating is tiring and i was up to 97, which he didn't like but it was my hand that never stops moving so could of been a faulty reading, the other hand came out at 87. (now i've totally fogotten what i was going to ask lol)

I so dont get how you functioned with only 29 beats, mind boggling but i am pleased you were on the ball, again!

Hugs.............JJ

[michelleric]

(((Mary))),

Goodness girl...so much happening in your world.  I am so sorry you have had to deal with all this, and so quickly.  I am so glad you didn't wait any longer than you did to get to the ER.  Very scary stuff!

I am thinking of you, take care of yourself and keep your wonderful sense of humor and eloquent way of speaking!

Much love and hugs,
Michelle

[SarahL2491]

Mary, Welcome to the pacer club!
I've had mine since  05 and as you, was admitted via ER (night with pacer pads on, spitting out reams of paper to keep the 'tele' people busy pasting it on sheets for my file and finally admitted to ICCU.  It was a roller coaster trip.  I enjoyed your conversation, having missed using all those big words all the time!

So hope you are back to normal soon and happy with your "ever ready bunny"

I have to have my battery replaced next winter, am down to having a pacer check every month now.

Take your time, we'll all be here waiting for you!