No diagnosis...but still getting a pacemaker

Hi all,

Firstly, I'd like to say how nice it is to have found this website and how supportive everyone is...it's a great comfort!

I have a history of dizzy spells since I was 13 and am now 27. A few weeks ago during a test to see if my spells were caused by Epilepsy, a single heart rate monitor that was placed on my chest picked up that my heart stopped for 8 seconds during a mild spell. I have had many 24hr holter monitors before, and it was sheer luck that I had a spell whilst doing these tests, as my other holter tests always came back normal. I found myself at the cardiologist the next day being told I need a pacemaker.

I saw the surgeon today and will be going in on Monday to have a dual lead pm implanted. My cardiologist suspects Sinus Arrest or AV Block, he said either way, the treatment is the same, and my surgeon today agreed. What I am wondering is has anyone else out there been in the same situation? My spells happen every 4 - 8 weeks, sometimes longer than that and I get a feeling of a hot flush that rises up from chest to my face. I have only passed out once when I was 16, but have come close a few times. In the last two weeks since I have discovered all this, I have to say I have been quite anxious and have noticed that I am getting breathless a fair bit and have slight pain in the left side my chest. Is this just stress, (I've never had any kind of surgery before) or could it be part of my condition?

I would appreciate any feedback!

Thanks.

6 Comments

me too!!!

by Hot Heart - 2009-11-24 01:11:31

I used to faint when I was a teenager, often went dizzy in queues etc.

Had 2 babies, c sections because they were breach, was fine.

All through my 20's and 30's used to get buzzing in head, was always told it was tinnitis, didnt challenge this because I used to go to loads of clubs with loud music (still do even now sometimes! lol).

Was told I'd got low blood pressure and that was what caused the dizziness, ok accepted that as well.

Felt tired a lot but ive always been a person who burned the candle at both ends, 2 jobs, 2 kids, socialising, gym, dogs, hiking, dancing, ohhhh and a younger husband, so I just accepted that feeling tired was due to my lifestyle.

Always felt cold, never seemed to have the capacity to warm my body up, needed hot water bottle if I went to bed on my own.

Was told at the gym I was really healthy, heart rate always dropped quickly after exercise, but I did have a problem raising it over 100.

Then.....................wham bam, the penny dropped and the docs realised that I had total heart block, most probably from birth, it only took 55 years to find it!!! lol

Now I'm fine, back to my old self!!

Me too!

by dw5281 - 2009-11-24 03:11:06

Your story sounded a lot like mine too! i have passed out since I was 7 (I clearly remember the first time!) & went through tests for everything - oh its just what happens when you feel unwell (?) oh you might have epilepsy etc. Then I had a loop recorder fitted which finally found out about sinus arrest (hallelujah!) & I had my pacemaker fitted in FEb last year when I was 27! I'm not saying that I love my pacemaker all the time but god I feel so much better! Not passed out in nearly 2years a HUGE record!! I have so much more energy than before & I feel almost normal - whilst realising that I was not feeling normal before I had it put in - weird!!

What a Miserable Feeling

by Bionic Man - 2009-11-24 04:11:27

I had the same problem with dizziness and the feeling of passing out. I never passed out but I would have these horrible episodes where I would start to black out. I would usually lay on the floor when I felt one coming on. The dizziness and fainting were new to me but I always had pain in my chest and occasional heaviness along with irregular beats. I haven't had any pain or any episodes since my pacer. That was a feeling I wouldn't wish on anyone.
This is what makes this website so great. Everyone has been through a lot of the same things.
Bob

Wow!

by pmgirl - 2009-11-24 05:11:36

Thank you all for your responses, it's nice to know that I'm not alone! A lot of people have been shocked that it took 14 years to get an answer, but I now know that you have be lucky to have an episode whilst having a test, and I guess I'm greatful to finally have an answer.

To answer your question Cabg Patch, I do mean light headded, not dizzy. I have passed out only once when I was 16. The rest of the time, I start to blackout but recover before I completely loose conciousness.

I can't believe how many of my symptoms are the same as all of you! I am ALWAYS cold (everybody thinks I'm crazy sometimes for always having the heat on), I get breathless easily and always thought I was just unfit... despite being trim, and ever since I can remember I have an annoying ringing in my right ear which is worse when I lay on my right side, I can actually feel a drumming / tapping sensation. Again, dr's never knew what it was, but perhaps it has something to do with my condition?

Thank you everybody, I'll give you an update post-op!

Similar Story

by Micah - 2009-11-24 11:11:39

Your story sounds a lot like mine. Infrequent dizzy spells for a decade, but I didn't have them looked into. When they suddenly increased and left me breathless, I went to the doc. Inside of a week I had a PM. And now no more dizzy spells! The anxiety is probably what you are feeling. I still get that, five months out, and probably always will pay too much attention to any little pain or tightness in my chest. Better than passing out in the car or the shower or just keeling over dead in Wal-Mart.
Good luck!

OMG!

by SianXx - 2009-11-24 11:11:54

When I read your story I got all emotional because it is pretty much EXACTLY the same as my story. I am 15, a female and have had the same kind of dizzy spells as you.

I have fainted since i was a baby, under circumstances such as hot weather, stress, shock, or pain related. When I was 12/13 (ish) i had one faint in which I had a seizure-like faint (arms and legs jerking, gurgling and eyes twitching) I went to hospital and over the next few weeks had lots of tests, similar to you as they first thought it might be epilepsy.

I had a few positive tilt-table tests (Where they lay you down for 15 minuts and then tilt the table so that you are at an angle at roughly 80 degrees. Naturally, all the blood rushed to my feet and i fainted. The worrying thing was though that my heart stopped for nearly 2 minutes. The second time was 1 and a half minutes and another was almost 3 minutes. These are good tests, although slightly uncomfortable if they are positive and you do black out, but worth a shot?!

This brought alarm, and at first they tried treating me with blood pressure tablets (midodrine) to try and stop me fainting in the first place. This worked, for over a year until i began fainting again, more and more regularly until it was nearly once a week. And so i had a pacemaker implanted in february of thi year aged 14. So far so good,, no faints! I occasionally feel slightly dizzy but theres nothing they can do about that.

I felt the same pre-op as you do... it should be nothing to worry about... all I can say is im sure it will be fine and good luck!

Sorry about the long comment I think i got slightly carried away! If you want to know anything more I am more than happy to help and give you advice, so please dont hesitate to send me messages.
Good luck
SianXx

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I have had my pacer since 2005. At first it ruled my life. It took some time to calm down and make the mental adjustment. I had trouble sleeping and I worried a lot about pulling wires. Now I just live my life as I wish.