What do you think?

I have had fainting episodes for a few years now. Before I pass out I can feel my heart slow down quite dramatically. These episodes are becoming more frequent and I'm not sure if its because the condition is worsening or if my freaking out about it is making it more severe.

Anyway, my doctor signed me up for the tilt table test, and after the nitroglycerin spray I passed out quite quickly. The test showed that my heart rate and blood pressure dropped at exactly the same time. My heart rate dropped to 20 bpm, my blood pressure was 45/0.

My doctor has told me that as I am only 25 years old he doesn't want to give me a pacemaker, and he also doesn't want to give me drugs that constantly increase my heart rate or blood pressure. So his advice was basically make 'life changes'. Im 25, 168cm tall, I weight 65kg, I'm quite fit, exercise regularly, have good fluid intake and the only change I needed to make was to increase my salt intake. I have done this. It is not helping. In your opinion should I have a pacemaker? I am sick of passing out, and freaking out about whether or not I'm going to pass out is just making the situation worse (please don't tell me to just stop worrying about passing out because honestly its not that simple).

I know that the majority of you are not doctors. Where I live there are only 2 cardiologists. I work for the hospital so I know that these 2 doctors would be extremely hesitant to contradict each other. Without forking out heaps to go private I can't really do much.

12 Comments

Agree.....

by Sue H. - 2013-02-20 05:02:12

I think Smitty is right on. Many cardiologists don't have the experience with pacemakers.

I was told by my original cardiologist that he is the "plumber" but I need an "electrician" for my heart rhythm problems.

As hard as it might be for you to get a second opinion, you must! Don't want to be dramatic but your life depends on it.

Pacemakers are amazing little pieces of medical technology and nothing to fear.

Best to you

Sue

I Say You Need A PM

by SMITTY - 2013-02-20 05:02:37

Like you said, I'm not a dr, but my uneducated opinion is you are a prime candidate for a pacemaker. Could it be that your dr's. lack of knowledge about pacemakers is influencing his decision.

I say it is better to get a PM at age 25 than to die at age 26 by passing out and driving head on into another vehicle or bridge, or tree. Anyway, a PM is not the equivalent of a death sentence. Get one, get it programmed correctly for your needs and watch your world look brighter. I'll repeat, a PM is not something to be dreaded. but a heart assisting device to be thankful we have. Also, so far as I know there are very few medicines that can continuously increase the heart rate without serious side effects.

I say get you another dr while you still have the opportunity.

Good luck,

Smitty

Difficult

by SaraTB - 2013-02-20 05:02:52

I certainly feed I'd want to sit down with your cardiologist and ask exactly why he doesn't think you'd benefit from a pacemaker. "Because you're young" isn't an adequate answer.
Lots and lots of people (members here, in some cases) have pacemakers at young ages.

If you are passing out, then it's affecting your lifestyle: should you be driving? Can people safely leave you alone with their child? Could passing out result in a head injury? All of these things need to be evaluated and simply "being young" isn't good enough. Does he expect that something will change as you age? That you'll grow out of it? If not, then now is as good a time as any, so you can get on with your life.

I'd also want much more information about why he won't try you with medication: you have an otherwise healthy lifestyle, and he doesn't want to give you a pacemaker? Is he suggesting you live your life cocooned in a padded box, in case you pass out? Why NOT try medication? Make him explain in detail.

Don't be afraid to push for answers to these questions: you may be 'young' but you're an adult, and deserve to be treated as one. You have a life to make, and your doctor needs to be a partner with you in that. How else are you supposed to plan your future?

I'm frustrated on your behalf. Make another appointment, and a list of questions, mostly beginning with "Why?"

Hang in there!

doctors

by Alma Annie - 2013-02-20 06:02:28

I find it hard to believe what your Dr. has told you. A pm can give such a good quality of life. Many babies have them. You need another opinion asap. Even if it does cost you it could save your life as all of the above people have said. Don't wait.
As for the pm, a while after insertion you will hardly know it is there.
Please let us all know how you go, and please don't wait before having another opinion.
Alma Annie

One question

by Zia - 2013-02-20 07:02:48

Why the salt increase? Did he do a blood test for electrolytes i.e. sodium, potassium, chloride, etc? If not, how can he say you need more salt?
I agree with all of the folks above. You need a second opinion preferably from an EP (electrophysiologist) the electrician of the heart. If new babies can have a pacemaker, you are definitely NOT too young.

So get a move on while you still can!!

Push for the PM

by Tracey_E - 2013-02-20 08:02:44

Zia, increasing salt is a typical prescription when bp drops too low.

You hit on one of my pet peeves, and it seems I rant about it here at least once a week!!! Age is a STUPID reason to put off getting a pm, to suffer when there is a simple solution. I, too, was told to wait because I was too young. I slept 2 years of my life away when I could have been feeling good, and I almost died the day I ended up in emergency surgery to get the pm. I was afraid of the surgery so I didn't push when my dr said let's wait. I really resent him for that now. I might have been young (27) but that was too young to feel so old and disabled, esp when I didn't have to.

That said, the pm may only help with the hr, not the bp. But a hr of 20 is not even close to borderline, it's dangerous, it's making your life hell, and it's hard on your body. Either way, my non-medical but been there, done that opinion, is politely but firmly push for the pm. If that doesn't work, be pushy about it and don't take no for an answer.

Good luck to you

Thank you

by ECrawford - 2013-02-21 03:02:23

Thank you all for your advice and giving me the confidence to go back to my doctor and demand better treatment. I've made an appointment for Friday next week and if my doctor can't give me what I need then I will go and stay with some family in a bigger city for a little while and make an appointment for an EP there. (never knew there was such a thing as an EP until you all told me either).

I will definitely keep you all updated on my progress. Thank you,

Elaine

They are all correct..............

by Tattoo Man - 2013-02-21 06:02:53


.........................you deserve better treatment than you are currently getting.

" I am sick of passing out".............

This says it all. You, rightly know that few of us will be Doctors....now forgive my sarcasm but I am wondering if the people treating you really are Doctors either.

Let PM Club know whereabout you live and I'm sure that someone will come up with a recomendation for a decent Cardiac specialist. If you live in the UK I can give you a list of them.

Do keep PMC informed, you can see from the response that members of PMC are really concerned for you. Best wishes.

Tattoo Man

recovery

by LeeT - 2013-02-21 10:02:37

you may pass out and not wake up. The cardiologist of your choice will advice you follow it before it's to late. I waited 20 days not a good idea after seeing a Electropphysiologist he reiterated what my first cardiologist said " to E R and surgery NOW. The heart truly a sensitive issue follow your cardio's advice not the GP..

I agree with all of the above

by ElectricFrank - 2013-02-21 12:02:56

Your condition is exactly what a pacemaker is for. It doesn't matter if you are 25 or 83 like I am. The issue is the same. The electrical conduction in your heart is intermittent so the output suddenly drops. A sudden drop to 20 is almost a certain passing out.

I hope you aren't driving. While the passing out may no be fatal, hitting a tree or worse yet someone else could be.

If you have any choice find another cardiologist or EP. You could probably push the issue with with the current one, but his heart (LOL) won't be into dealing with you.

By the way, the pacer is no problem to have. I have had mine for 9 years., I hike, Jeep in the desert, and do whatever I like. My only problem is that the rest of my body is wearing out.

good luck,

frank

Low pulse, low BP and PM

by jenny97 - 2013-02-22 10:02:24

Your story sounds familiar. I was in my early 20s when I was taken to the hospital 3 times in two weeks for fainting. The first ER dr told me it was a panic attack and sent me home. The second sent me to an electrophysiologist (EP), who ran a tilt table test which showed drop in BP and heart rate at the same time. My tilt table results indicated Vasovagal syncope (VVS) aka neurocardiogenic syncope and postural orthostatic tachycardia syndrome (POTS). Was there a diagnosis associated with your tilt table results?

My EP recommended a PM right away, but I was young and didn't like the idea of a PM. I fought it for about a year, trying out various medications (and not driving, of course), until the passing out became so inconvenient and worrisome that it was clear I needed to take a different approach.

As the others mentioned, if your condition is simple bradycardia, a PM is probably the best option. However, if the low BP is the greater issue (which it sounds like your doctor thinks it is based on his advice to increase salt intake), the efficacy of a PM is a little less clear. For the fortunate, like me, it is lifechanging. But for others, it makes little or no difference. Aside from one PM that is approved for the treatment of VVS (the biotronik evia), using a PM for VVS is not generally the first line of defense. Medications like midodrine can be used to try to increase BP. Increased sodium (6-8 grams per day) can help. Increased fluids (water and low sugar sports drinks primarily) can make a difference.

All that said, it's a very personal decision. While the condition of VVS or NCS is not considered life threatening because once you pass out, you become horizontal and your BP and heart rate typically return to normal, it can be life altering and life destroying. And you have to take precautions (like not driving) to ensure that you do not risk hurting someone else. Other conditions with which you may have been diagnosed might be considered life threatening, so that is a factor that you should take into consideration.

For myself, I fought the PM for a long time and ultimately, I was glad I did. I never wonder now if I should have gotten it because I know I tried every other alternative available at the time. For me, this has given me a great deal of peace.

That said, I felt better upon waking up from the PM surgery than I had in years. It was an immediate and clear contrast. There is a year of my life that I could have lived feeling better, rather than going through the discomfort, embarrassment, and fear that I put myself through. So again, it's a personal decision.

Now on my second PM and in my mid-30s, my heart is going strong, my BP has improved, and I am training for my first half marathon.

Good luck to you in your decision-making process. And may you find the right doctor who can help guide you to the plan that will be most effective for you.

All the best,

Jenny

I agree with the many!

by Jewelrymkr1 - 2013-02-23 03:02:18

I believe the people here that've said "it doesnt matter haw old you are,"! My dr ,who s the best neuro-Cardiologist in the USA, puts pacemakers in young infants and children! If you need one ..,you need one! No matter your age ! It will give you quality of life! If i were you, i would find an EPS OR "Electrophysiologist/Cardiologist" who specializes in rhythm disorders, bradycardia ( or low heart rates)..,etc...then & only then you'll get the care that you need! Even my own general Cardiologist says he's a "fish out of water" when it comes to even reading my printout from the pacemaker!
My advice is go to an Electrophysiologist/EPS Cardiologist and get the correct help from the correct kind of Dr......you cannot go to a regular Dentist for braces and get it done right! You need to see an Orthodontist! Do you see what I am saying? Good luck!

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Member Quotes

It may be the first time we've felt a normal heart rhythm in a long time, so of course it seems too fast and too strong.