24 yrs old and tired of being tired!
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.