Decision-making to have a PM or to not have a PM

Hello everyone, I stumbled upon this website through a Google search engine on pacemakers. My cardiologist, neurologist and now electro-physiologist have all recommended and enforced that I am a very strong candidate to receive a pacemaker since September 2005, (more so now than before). I'm currently taking midodrine hCl and zoloft to control my episodes of fainting (very severe). I am going into my third full year of taking medication, and even though my symptoms have improved, they are not good.
When I have syncopal episodes, they are severe, meaning, my heart slows way, way down and on the second of many tilt table tests I'm participated in, after 9 minutes (first one I lasted 3 minutes), my blood pressure went down to 83/76, and my heart completely stopped.
Now, whenever I go out and do something, I'm always thinking, what if I get sick. What if I pass out and no one can help me? Also, my husband is worried about me constantly and he has been gone since last May (Army Reserves) and in Iraq deployed (for the 3rd time). Being in the Army myself once for almost 13 years, I am not stressed about this, but at the same time, I cannot help but think what I would do, if something happened to him, and me too, while he's away.
My husband is scared about my getting a PM, and I am a little nervous too. I'm still so young (33 as I said). I guess I would like to know if anyone here as heard about these symptoms from anywhere, and, do a lot of young adults have pacemakers?
Please talk to me about what you know about these symptoms and PM's. It is coming down to not "if" I have a PM, but "when" I receive a PM.
Thanks... "Littletrinh" 05/02/2008

11 Comments

PM nothing to be scared about.

by bowlrbob - 2008-05-02 08:05:10

We have many members here as young or younger than you. I am older but my symtoms were the same. I have had a pm for almost 3 years now and for the last 2 after some adjustments were made I have had 0 that is nada episodes. I only take 25 m of atenolol and 1 aspirin a day. Not having to take meds is great. I hope you will get an answer from Ela-Girl she is in your age bracket and has had these symtoms too. I am sure she will tell you get it done you will be much better off in the long run. Bowlrbob

And Bob was right...

by ela-girl - 2008-05-02 08:05:21

...I would say go ahead with it! Thanks for the props, Bob! :)

ela-girl

Dont worry it is not that bad!

by allanrogers - 2008-05-02 08:05:42

Hi Little rinth

My name is Allan if you want to put a picture to my face you will find me inthe gallery.I am 41 and had my pacemaker put in last October and believe me the operation is very quick under 60 minutes and you are usually awake if you take a valium it flys by.

If we are all honest on here no one is happy about having a pacemaker because i guess it confirms for definite that your heart needs help-but turning that around it helps your heart and helps you get your physical life back on track.
You will find this site the best source of information and the only way to find out the truth about the whole picture as everyone on here will tell you that doctors and technicians play down the psychological effect of having a pacemaker but eventually after you get your settings right and you adjust to your new friend you go from thinking about it every ten minutes to every hour to eventually forgetting about it all day.

Dont be scared as it will help you and your heart needs the help so that is good the incision site is sore for about three weeks and you cannot lift your left arm above elbow level for the first month to give your cables a chance to set in.
I wont lie to you is a very sureal situation and still think how did this happen to me and it makes me angry but what is the use in fighting it what will be will be and if I can live another month or twenty years with a pacemakers help it is worth it.

Go for it trust me it is not as bad as it all seems and there is light at the end of your tunnel you are at the scariest part now

Welcome!

by ela-girl - 2008-05-02 08:05:46

Hi, Littletrinh.

First, let me say welcome! This a great place with wonderful people willing to share experiences and help you along the way. There have been a lot of questions about syncope and pm recently, and there are a number of us here on the site who have your similar symptoms/condition so...you've come to the right place! Please know that there is a "search" feature in the upper right hand corner of this site in the gray. You can look for previous posts and replies on syncope and related topics there.

I am 30 years old (almost 31) and have had my dual chamber pacemaker for almost two years now. I have severe bradycardia and neurocardiogenic syncope and heart block. During my blackouts, I would have no warning sign one was coming and my heart rate would be under 10 beats per minute for minutes on end and my blood pressure would be 60/40 at its highest. I have done quite a number on myself from blacking out and hitting various hard objects. My old cardio in another state didn't know what to do with me as he couldn't figure out what was wrong. He also didn't believe me about what was happening since tests never caught anything on tape (my blackouts would be many in a day, or a week, or a month--kinda consistently inconsistent). It would take my body days to find homeostasis again. I was always exhausted and sleeping my life away. I did have a positive tilt table but Holter monitors and echo's and EKG's and a sleep type of neuro test showed all was ok. My old cardio just drugged me with Toprol XL 50mg daily and that was about it. He said a pacemaker was a last resort option but that he wouldn't ever even consider putting one in me because of my age--I was too young. The Toprol was awful--I felt it wasn't doing anything but making me more sluggish than I already was and keeping my extremities cold. I also used to get a night rash with it.

Then I moved states and had an episode while teaching at school. I was really scared because it was the first time when I came to that I didn't know who I was, where I was, what time of day it was etc. I was rushed to the ER where I blacked out again and almost didn't make it back to this side of the heavens! I had been dealing with all this for almost 5 years at this point. Anyways, I was whisked away to a local cardio hospital and had my pm implanted the next morning.

For me, the pacemaker has been THE biggest blessing. I finally have a life. The pm has controlled all my symptoms and my condition. I even got off the Toprol because it wasn't needed. I now have a wonderful EP who I credit with saving my life. And we've actually become realy good friends! I can drive now and hike and go places without worry of blacking out or dying or hurting myself or others. For me, compression stockings, a higher diet in salt, and sports drinks to keep up the electrolytes didn't help with my syncope issues. Only the pm. With that said, though, the pm can only do so much and people with syncope issues can still have their symptoms even after the pm is implanted. My doctor has called me "a walking billboard for pacemaker therapy."

While it's not as common for younger people to have pm's, there are more of us out there than you would expect. Especially on this site! So take heart.

I can understand your frustrations and even your nervousness about a pacemaker. I was glad to have had my pm implanted via emergency surgery--it didn't give me any time to think about it! But really, it's not such a big deal after awhile and you should feel safer having it because you have a battery backup in case things go wrong. The recovery period can be a bit hectic because you tend to be hyper-focused on the pm and learning to trust it do it's job. And you have some restrictions for 6+ weeks that you have to deal with like no lifting your arm past your shoulders or using you arm (on the pm implant side) to pull open doors or stretching it behind your back. You can't lift anything over 5 lbs. But in my opinion, it's all worth it. I don't even recognize that I have my pm most of the time. And the scar isn't much of an issue either. I can still wear a two piece and tanks with no scar showing.

Sorry this message is so long...I didn't even realize! Please feel free to private me with any questions (that feature is in the "member menu" in the upper right hand corner of the site). I'm sure others will be along to help, too!

Again, welcome! And hang in there!
ela-girl

decision

by pmredhead - 2008-05-02 08:05:51

hi littletrinh,

i really think you should get a pacemaker. from reading your story it seems that you should get one definetly!

well, here's why!!

from what the doctors have told you and all the symptoms that you've having.
i'm 23 years old i have a pacemaker. I got mine in january 08. i have complete heart block from birth. i've been to the cardiologists all of my life and let me tell you the last time i was there before my pacemaker it was scarry from what the doctor told me. He put me on a heart monitor 24 hours, when i went back the next day he told me that my heart stopped for 3 seconds during the night. So he recommended that i get a pacemaker.
I must tell you that it was a life saver!! before the pacemaker i was feeling horrible, shortness of breath, dizzy spells, fainting spells, low energy. but now that i have the pacemaker i feel so better and i'm living a better life!!
The surgery is not that bad believe me!! i was feeling the same way and now i'm thankful everyday for this device that's inside me. honestly it feels wierd sometimes but you get used to it. just let me know what you decide!!
constance

Ok here is my 2 cents worth....

by maryanne - 2008-05-02 09:05:14

I have had my PM for 23 years.....half my life.....I most probably should have had one sooner but I never said anything....it wasn't until my brother had a cardiac arrest at 26 and then my sister had heart problems...when they both ended up with PM/s, that was when I decided I needed to get checked out. In doing so it was determined that I too required a PM....was I happy about it....NO...I was only 23 ....I thought I would be disfigured...I really hesitated about it....but once it was in and I realized how much better I felt...it was amazing....best thing I ever did....I have lead a very active life...had three children .....I run, cycle, sky dive, parasail...you name it....nothing holds me back other than myself.

Was I scared at first ....you bet.....but now I know that with out it my life would have been a whole lot different.

It does take time to adjust to the PM...and it might even take a little time to determine which settings are best for you....we are all different...what might work for me might not work for you....but in the end....I would choose to have a PM rather than the alternative....

Just my humble (positive) opinion...

by ela-girl - 2008-05-02 09:05:26

To be honest, I was never angry about the pacemaker or unhappy to have one. I quite like it actually! No lie. It has been nothing but a blessing for me. Now it did take time to get used to, but I wouldn't equate that with being upset about it. At least for me. I was dealing more with the issue of dying without the pacemaker!!!!

It seems to me that many people in the UK tend to be 'awake' during the procedure with a numbing of the area and some sedative type med. And in the US you tend to be 'asleep' for the procedure. I know it varies for every person and doctor and what you might want and where you are located...but for me, I was out. No worries there! And all I used for 'pain' was icing the incision site for a couple of days after. I didn't need to take ANY pain meds. And yeah, the surgery is about 1-2 hours depending...

While it's true some people have psychological issues after a pacemaker--like depression--it doesn't mean you will have those issues. I think sometimes it's just maybe the kind of person you are or how you deal with life. Ya know?

And yes...be aware that you will come out of surgery with factory settings on your pm to ensure that the pm is functioning properly. It will take a few months for you to get your settings tweaked. It can be a bit of trial and error of finding what works for you. But it will happen!

OK. Enough of my babbling...!
ela-girl

Wow, thank you!!!!

by littletrinh - 2008-05-02 11:05:53

You have no idea what a relief it is to hear everyone's comments. I still remember my very first time that I fainted and it was when I was about 7-ish. From then, it was like ela-girl had said previously...consistently inconsistent. I even was sick when I was in the Army, very active, healthy, etc. The medics that treated me at that time claimed I was dehydrated, and because it was a 1/2 day, being that is was Christmas Eve day, they sent me back to my barracks at around lunch and told me to drink more water.

I am scared about have the procedure, but I am happy to say that everyone's comments have really laid to rest a lot of my frustrations. I feel that finally, I have answers as to why I'm tired all of the time, why I pass out without warning, my symptoms are so severe, that no matter what I do, I cannot physically control them.

I've also been reading a lot on different nerves in the body and about the vagus nerve. Does anyone know anything about this? Well, ultimately, I will be getting the procedure done after my husband returns home June 4th!!!! (He's been gone since last May, with a short visit home in January). It will surely be nice to have him back home.

Most likely, I will have the dual lead PM. This is the recommendation of my cardiologist, and probably of my EP and Neurologist.

Thank you so much for the support. Since getting "sick" more frequently, I've been extremely frustrated about my health, or lack thereof. It's mostly the not knowing what is going on with me. But, there is light at the end of the tunnel. I see it now, and feel there are answers out there for me.
Thank you again everyone for your responses, and I will be back and keep you posted on when I'm getting my PM.
Littletrinh

All for the better

by Miker - 2008-05-03 10:05:48

Another story for you. At 37 I was having the same problems. I seemed to always fall head first, after the third time in ER getting stitches the serious testing started.

When my EP doc told me I needed a pacemaker I did not take it well. Thought I was to young, healthy and the like. I remember him saying “in six months you won’t even know you have one” He was right!!!

I am now 52 and on my second pacer and have not had a single episode of syncope or needing any more stitches on my forehead.
Life is good.
Mike

Vagus Nerve

by ela-girl - 2008-05-03 12:05:30

Yes...the vagus nerve is the biggie! Neurocardiogenic syncope (also known by other names like dysautonomia, POTS, vasovagal syncope etc.--they're all basically the same...) deals with the vagus nerve. I'm sure you've been diagnosed with one of these 'phrases', yeah? "Activation" of this nerve usually leads to low blood pressure and/or a slower heart rate hence the syncope. Stress can over-activate the vagus nerve (along with other things).

I'm not sure what specifics you want to know...so, I leave it there!

ela-girl

PS: I'm excited for you that your hubby is coming home! Gives you something to keep your spirits up and look forward to...

Welcome!

by Swedeheart - 2008-05-03 12:05:49

Yikes, I wrote a nice long post and it "disappeared"... sorry. I will try again but not be so wordy...

I am one of those (like you) who had to decide when to get my pacemaker (not necessarily if...) I did struggle with my decision a great deal, but mostly because I didn't feel I had enough information or knowledge about the whole thing.

I am now on day 68 since implant. It took me a couple of months before I really felt "better"... and I had expected to feel better right away... With that said, I can now drive again (I was on restriction and couldn't drive because they were afraid I would pass out...) and feel like I can make plans for the future.

You have received lots of good advice and input here, and I am sure once you receive your PM and the healing time passes you will be glad. You can then actually live your life again!

I might suggest you use the search feature and search for threads on placement, as well as look at some of the medical sites. There are options for placement of your pacemaker and you should discuss them with your EP. You might also ask what brand he/she anticipates using. All the manufacturers have active websites that provide information. I have a dual lead Medtronic and they have lots of information at their site. They have also been great to answer questions I have had when I email them.

I would also suggest you think about a medic alert bracelet or necklace. It is something you can do now so if you have a problem when you are by yourself out in public, it can speak for you when you can't. There are different groups out there, but my personal preference is medicalert.org They are world wide and keep your medical information and will provide it to medical personnel, and notify your family if need be. The cost is not too great. There website is: www.medicalert.org

Good luck. Ask any and all questions ~ big or small! The folks here are great.

Swedeheart

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