Oh so nervous

Hello all I am a 23 year old mother, with POTS syndrome and apparently now tachy brady syndrome. For 2 1/2 years I have had runs of SVT, A tach, etc. They have tried lots of medications but it lowers my already low resting heart rate of around 40. I did not have the low heart rate before 2 1/2 years ago. Every doctor I have seen, including my ER doctor, my cardio, and my EP says my heart is too naturally to take the medications at the dosage I need to control my fast. So i am scheduled Monday the 15th for a pacemaker. I guess I am just posting because I am nervous after reading all the complications people have, the settings that need adjusted alot, and do you all have any recommendations on settings? I am a 23 year not active unless you count chasing a 3 year old and when I can yoga. I am however physically in good shape.

7 Comments

settingss

by Alma Annie - 2013-04-09 03:04:08

I had my pm 2 years ago after an ablation. Settings were never changed until I needed another ablation to stop afib and other things. I had that in April 2012 and have not needed settings changed at all. No complications and everything ticking as it should be. I think complications are the exception rather than the rule, so please don't worry. I am sure your EP will get things right for you.
This is a wonderful site and I have learnt much from it. I read it most mornings although I don't always log in.
All the very best, and please let us know how you go.
Alma Annie.
ps. Yes you can be quite active chasing a 3 year old, and also chasing an 18 month old as well as a 3 year old. I remember doing!!!

Why the pacemaker?

by golden_snitch - 2013-04-09 03:04:25

Hi!

Are you getting the pacemaker, so that they can give you more medications to control your fast heart rates? The pacemaker itself will not control those, pacemakers can only treat bradycardia. You said that your doctors don't think you should be taking medications at such high dosages to control the fast rates, and so now you'll get a pacemaker. That doesn't make sense. It only makes sense if they plan to put you on more drugs to treat the SVT.

Have they ever tried a catheter ablation to treat the SVTs? Some atrial tachycardias can be ablated with success rates of more than 90%.

As for the settings, to prevent your heart rate from dropping below a certain rate no fine tuning will be needed. And when you go into tachycardia, the pacemaker won't be able to do anything, it just watches, so no settings to be programmed for that. If you have a fully functioning AV-node, not even an upper rate limit will make any difference.

I'd suggest that you make sure that you really understood why you are getting the pacemaker, and what will be done about the SVT afterwards.

Best wishes
Inga

More information:)

by Ryaleigh - 2013-04-09 03:04:46

Hello, I guess I should of added additional information. I have had a previous ablation that was successful for Wolff Parkinson White. I have also had 4 EP studies looking for the fast rate to ablate, but they cannot find it. They say its above the Av node and hard to find. I have been to Mayo Clinic Rochester, and just got off the phone with my cardios nurse. They have to agree with my doctors here, I need a pacemaker as I have too low of a resting heart rate to take the medication I need to control the fast rate. My doctor does not specialize in POTS, but I did see a neuro and cardio at Mayo, who do. I have not got the chance to try things like Verapamil, because needless to say watching tv my heart goes down to 48 and sometimes down into mid thirties. So.. that is when they got the idea of a pacemaker so I could take the Meds and get my life back. I appreciate all of your comments that are really reassuring. They will not tell me where Im getting it inserted.. But I imagine in the same place my loop monitor is inserted, so above the collar bone:(
Tiffany I have to ask- did the pacemaker surgery cause you to have worse Pot Symptoms?

In good company

by Selwyn - 2013-04-09 07:04:48

The USA has almost 1/2 million people with pacemakers- you are in good company! Even the last Pope had one. For the cardiologists doing the insertion it is no different to you and I driving our cars. They do this every day, often more than once daily. Settings are standardised and then if you want something extra, can be fine tuned to suit your life style.

Sorry to hear about the POTS. Makes giving betablockers to control the tachycardia rather difficult, and if you couple this with a bradycardic problem, I would suggest that is why the PM is considered, especially given that the vast majority of those with PMs are symptom free. You can hope then that the top rate can be controlled by rate limiting drugs, and the bottom rate by the PM. Hopefully, this is the road to a better future.

Wishing you well.

pacing

by Tracey_E - 2013-04-09 10:04:06

First of all, read and reread Inga's advice then have a talk with your dr first. I, too, would probably prefer to at least try an ablation first before upping the meds and getting the pm. You may end up with the pm, but it's worth a try. POTS is complicated. Does your dr specialize in it? If not, that might be where I'd go next.

Second, if you decide to go with it keep in mind that for every person who posts here with a complication, there are hundreds, probably thousands, out there who got it and got on with their lives. They don't have a reason to come here, so it makes the ratio of complications look vastly out of proportion. In reality, complication happen less than 1% of the time, and most of those are minor. I've had 4 pm surgeries now, got my first one 19 years go, no complications either with the surgeries or in between. I think my experience is the rule, not the exception.

Good luck to you.

Pot Syndrome after PM

by Tiffanym78 - 2013-04-09 10:04:52

So far, it seems to be better. My cardiologist had me on blood pressure meds to up my low blood pressure, which was to help with the pot syndrome. After the PM, the BP meds cause my BP to shoot really high. Now, I carry the BP meds in my purse and only take them of I'm going to be standing for long periods of time. I've also upped my salt intake, but so far, it seems like its gotten better since the PM. :-)

35 with Pots syndrom and Brady/Tachy

by Tiffanym78 - 2013-04-09 12:04:06

Hello,

I just had my PM inserted on Feb 1st, of this year. I too have Pots Syndrome, along with Bradycardia and Tachycardia & a second degree AV block. I was also put on a beta blocker to control the fast beats, but unfortunately, it lowered my low beats too low, and well...down, I'd go. =) I fought the PM idea for a while. My EP explained it to me. He said the PM controls the low beats, but not the fast. The medicine controls the fast beats, but makes the lower beats to low. He said the PM and medication will need to work together. He has my PM set to not go any lower than 69 BPM. I am now on a beta blocker that will control my rapid heart rate, without the danger of my low rate dropping too low. You will still experience heart palpitations once in a while. I wasn't told that, so I thought something was wrong. See, our condition is different, because we aren't just too slow or too fast, but we are both.

Where are you having the PM inserted? Are you going with the collar bone, or under the breast? I chose under the breast, for more protection and cosmetic reasons. I have a 4 year old, and he is quite rambunctious. I have been tackled in the chest a few times since the surgery, so, I'm glad the PM has more protection. =)

I only took a week and 2 days off of work. I was still sore, but I work in an office with no physical labor. My son stayed with his father for 10 days after my surgery. I really missed him, but I know I wouldn't have gotten the rest that I needed if he had stayed home. I didn't realize how bad I felt, until I started feeling better after the PM.

I haven't had to have my PM adjust yet, only my meds have been adjusted.

Good luck and I wish you the best,
Tiffany

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