24 yrs old and tired of being tired!

Hello,
I'm brand new to this site and this is my first post. My short story is that I'm going in on June 5th to consult about/get instructions/and schedule pacemaker implant. I am 24, married with 2 elementary school aged children.

Here's the longer story: I have what my dr. calls a severe case of NCS or VVS (neurocardiogenic syncope or vaso-vagal syncope) with the extra kicker of >5 seconds asystole (heart stops when I faint), and thus he has been pushing the pacemaker for awhile now. I have been symptomatic off and on since I was about 13 years old. Two summers ago I passed out cold and flat-lined during a tile-table test, with no drugs to induce it or anything, just me and the tilting and having to hold still for a few minutes. That was the scariest day of my life. They told me my heart stopped and they had to bring me back and I woke up with oxygen up my nose and about 10 more people in the room then I remembered from before the fainting spell. Asystole... Isn't that basically like dying???? They finally figured out my diagnosis that day though, so I guess it was important to do the test. I had my moments of being unappreciative though :-) I had fought this idea of the pacemaker because I was 22 at the time and didn't want to feel "disabled" and so tried a couple of meds instead over the last 2 years since diagnosis, but quality of life has been really bad, it's like they don't work and they make me feel worse and weird and cold and out of it sometimes, so I basically wish I didn't take them at all. I cry at night sometimes I feel so bad, because of this latest med. which is called Midodrine. It is for low blood pressure. I follow the directions and make sure I don't take it too close to bedtime, but STILL I am so miserable at night it is hard to sleep. I also don't like my husband or children touching me because my skin is constantly cold and goosebumpy and it like hurts to be touched. Which is really sad. I feel like I'm tired all the time and not being a good mother and wife. So I hope I am making the right decision, I called my nurse and dr. a couple times last week and we scheduled the consult, I said I am finally psyched-myself-up to go through with it. I want to wean off of the meds. Period.

The med I tried prior to the Midodrine was Toprol XL (metropolol), which was supposed to block the nerve signal which tells my heart to slow down at the same time my BP is dropping. My body got immune to that too quickly and it stopped being effective. My pulse rate at night both before and after meds still drops to like 40 unfortunately, making mornings very difficult for me, or anytime I have to get up in the middle of the night for my children. I am very out of it and disoriented and can barely get up and walk when I wake up. I am told that the pacemaker can keep me above the 40 and maybe more like 60 at night so I can maybe feel normal again???

Prior to both meds (and during too) I have tried all of the following: increasing salt in diet, staying hydrated with water and sports drinks, wearing compression stockings, watching my pre-fainting symptoms so I know when to sit or lay down and raise my legs above my heart, etc. Everything helps but of course doesn't cure. And if I have a sudden pain or fatigue there's no stopping it. I was in a car wreck (not my fault) at one time which nearly dibilitated me because the soreness in my neck would make me dizzy and faint if the pain would shoot up into my head. Work was nearly impossible. Thankfully physical therapy got my neck back in alignment and the pain is gone now. But I still have drops in pulse and blood pressure that affect me. From my understanding the pacemaker will at least keep the pulse up even if my blood pressure drops. I am still willing to do all the blood-volumizing tricks in my diet to work on the blood pressure issues, if I can just get off the dang Midodrine!!!

Day to day, I have to get up slow and move slow. It's getting pretty old! I want to be able to run after my daughter after soccer practice and play and not have to worry about my pulse being at a good rate but then as soon as I STOP running it drops too low right away again. I want to be able to exercise again for the same reason.

It is hard to explain to family and friends that I believe the pacemaker is truly the best idea for me now finally. I was so opposed to it before that I'm afraid I may have convinced them too well!! Lol. But I feel I am finally making the right decision and I will probably kick myself for not doing it sooner. I am on this website looking for a little support in that my doctor and I are doing the right thing even though I so young. For me the pacemaker is probably a lifetime decision. Thanks to anybody in advance who can lend some encouraging words.

Sincerely,
Constance


7 Comments

What a story!

by CathrynB - 2007-05-21 01:05:34

Hey Constance,
Welcome to PM Club! You've come to the right place for support, understanding and answers to many of your questions.
Yikes, you have really been through a lot in the last 11 years! Only you and your doctor can decide whether a pacemaker is the answer to your problems, but I'd be willing to bet if you get it you'll wish you'd done it sooner. There are MANY young people in their teens and twenties, and parents of babies and children with pacemakers, on this site. Other than initially feeling "odd" about having a PM at such a young age, they seem to adjust very well and go on to lead normal lives. Except for dear 21-year-old Valerie who keeps us all crying tears of laughter most days, many of the other young people don't post all that often because they are so busy getting on with their lives.
On this site, you mostly read about the problems people have because the site is for support and answers, but many, many folks would tell you they do all the activities they used to do before the PM, have more energy, are less tired, etc. If what you need is a faster heartbeat, a PM should do the trick.
I got my first PM 1-24-07 and it solved my fainting and dizzy spells completely. Previously my heartrate was generally in the 40s and I was having "pauses" in my heartbeat of 4-5 seconds daily too. Now my PM is set for 55 beats per minute generally, and my sleep mode is turned on at 45 beats per minute midnight - 6am as I don't really need more while I'm sleeping. If you get the PM, your doctor might set it higher unless you're a very active athlete who would normally have a low rate.
You know, just hearing that you can't let your children and husband touch you, can't run with your kids, can't sleep, are so cold -- that sounds like a much worse quality of life than almost anything you must have read about on this site.
If you get the PM, be sure it's an Electrophysiologist who performs the surgery and that he/she has done many of them. And tell them you won't accept any PMs that are on a manufacturers recall list (believe it or not, doctors still occasionally implant recalled devices).
Please let us know what you decide after the June 5 appointment with your doctor -- we care how you're doing! Take care, Cathryn

Welcome!

by tcrabtree85 - 2007-05-21 02:05:27

Hi,
I am 21 and understand exactly where you are coming from not wanting to have to experience stuff so young. I think that everybody else has given you good info and has answered your questions.
If you need somebody to talk to or anything please just let me know you can send me a private message anytime. I wish you luck things will work out for you.
Along with Cathryn I am going to also agree with her Valerie is amazing and will always find a way to get you to laugh while facing all this stuff. She has helped me every step of the way with my pm.
Please keep us updated on how you are doing and ask as many questions as you need to somebody will always be able to answer them.
My prayers go out to you and also to your family.

Tammy

Welcome

by bionic_laura - 2007-05-21 04:05:14

Hi there,

Welcome to the pacemaker club. As Cathryn said you're in the right place for support and information. I'm one of those young women with a pacemaker. I was 25 when it was put in. I have heart block and low heart rate, it was at about 30-40bpm when I used to pass out. I can honestly say the pacemaker changed my life for the better. I feel so much better now. The surgery and recovery are difficult but they were worth it in my opinion. If your heart has an electrical problem then I think the best way of curing it is with an electrical device!
Anyway best of luck and I really hope it all works out for you and that you start feeling better.

Bionic Laura

It should help.

by bowlrbob - 2007-05-21 05:05:39

finally a subject I know something about. I also have VVS. I didn't know it till I blacked out for 3 and 1/2 hours. I was on vacation. Went to the emergency room and after waking up for about 10 minutes after the long event. I flatlined for 30 seconds. Needless to say I had a bunch of people in the room when I came back. They gave epinephrine to help me recouver. But that's when they found out my problem. I had a pacemaker put in the following day. They set it for 70 beats a minute and turned on the drop rate response. This kicks in when the heart rate slows down by 25 points. The pm then kicks the heart rate to 100bpm for 2 minutes. Since this was done i have had no blackouts or dizzyness. I am currently only on 25mg. of atenolol for some slightly high blood pressure. Also 1 aspirin a day no other medicine. I think you will love getting off the medicine. I am older than you but they have to give pm's to babies some times. So you arn't old because of the pm. It's just one of those things that works. Bowlrbob

young pacer

by valerie - 2007-05-21 05:05:57

Hey, wait a minute! I get on with life; it’s called “multi-tasking”. LOL!! Jk.
Well, young Constance, you’ve probably already deduced that this site has a healthy combination of support, educational resources, personal stories by your fellow pacers (which helps many other pacers), and every now and then, a little bantering and laughter between wonderful members (where appropriate of course).
And look, already you have 6 wonderful responses (well, 8. My reply counts as 2, lol jk) and you haven’t even got your pacemaker yet! Why all the support you may ask? B/c many of us have been where you are right now: tired of being tired. Some pacers were even tired of saying that they’re tired of being tired.
To make my rambling short (or is it too late for that..) you have this whole diverse group of people here ready to support you in whatever your decision may be.
With that said, I hope everything goes well on June 5th and please keep us posted on your decision. You’re in my prayers.
Take care,
~valerie

WoW!!!

by Helen - 2007-05-21 07:05:08

Hello,
I am fairly new to this site too! I couldn't believe the first half of your story because it was a "dead ringer" for mine!
I had been fainting for years ( since I was about 9 years old)and had a tilt table test at the age 27. I fainted for the doctors without the administration of drugs and tilting too! I woke with the whole "carry ons" and was sent home with the advice that a pacemaker might help or I might grown out of this vaso-vagal syncope thing. I took the second option because I was too scared to have the pacer put in. I am now 37 and could very well have died had I not had emergency surgery to place my pacemaker. In hind sight I would have had the pacer surgery long before now and would have avoided the stress and concern not only to my loved ones but to myself. Go for it! The surgical procedure doesn't take long and this is the best site for advice and support. Recovery can be a bit slow but it can't be worse than you are currently experiencing. Good luck!
Happy beating,
Helen

Me too

by sboissonnas - 2007-05-21 10:05:00

Hi Constance,

I'm a VVS too - I went asystole for 23 seconds during my tilt table test (no drugs needed for mine either!). They just woke me up, though, no commotion or extra docs... but I did leave the hospital a couple days later with a pacemaker.

I'm only 32, been a fainter my whole life (thank you VVS), and when they told me I needed a pacemaker I figured "hey, I've been fine up to now, I don't -really- need a pacemaker, right?" Except, well, after I thought about it for a little longer I realized that I probably could have *died* any of those other times I fainted, too, and I just got really lucky that I didn't. That was a very scary thought for me to comprehend - how many times did my heart stop before? And for how long? (They told me in the hospital "Sure, your heart will eventually start back up. It just might not be in time.")

For me, even though I may never need my pacemaker (and hope I don't), it's an insurance policy. I can't guarantee I'll never faint again, but at least now I CAN guarantee my heart won't stop if I do.

(I'm also on Toprol XL, to try to keep me from fainting at all.)

I hope you're able to get the relief you need from your symptoms. We're all here for you, and let us know how it goes!

Take care,
Stephanie

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