Dr Thinks It's Time For Pacemaker

[goodnuff77]

My Dr decided that it's time to think about a pacemaker and he sent in the referal to the cardio. The cardio wanted to put one in 3 years ago. So I have until wednesday to come up with questions. I was wondering if those of you that have pace makers does it help with any of the other pots related symptoms or just level off the heart rate. I ask because I have hypotension and pooling in hands and feet. Stomach problems, migrains, daily head aches. Brain fog etc... I've been told I cant take antiarythmia drugs because of the neuro side and it can cause heart failure. So does the pacemaker function right with the neuro side of things? Confused and having trouble waiting till wednesday to find out anything.

[Brye]

I'm typing one handed, sick child in the other ,,, pardon errors please. I had one placed about a month ago. It's really too soon to kno if it's going to make a big difference. I developed a blood clot in my leg and have been on bedrest so really haven't had a chance to be active with it. I did notice the resting chest pain i had has resolved. I also noticed my ankles have never been skinnier. I normally have swollen ankles. 'i figure that has to be a good sign.. My Hr was dropping into yhe 30's durung some of my most light headed moments. It was a decision i had been putting off for years hopin med adjustments would help.

Brye

[goodnuff77]

Brye :I forgot to mention my biggest question and that was the syncope. I dont know if it's from the hypotension or the heart rate. The other thing that confuses me is they set a high and low for the rate and some have the exersise setting. Does your heart rate go high or is it always brady and do you faint? Wondering if the pace make can tell the difference between exercise and pots.

[tinkerbella]

My doc suggested one back in the beginning....after reading how people needed pacing after pacing and ablation after ablation and still needed meds. We decided together not to do it. Then I went to my neuro pots spec. and she said no, none of my pots patients have them. She said for the same reasons also.... SO, when in doubt, check it all out. Gather all your data and talk with your doc. Once in they can't go back. Good Luck with your decision.

Everyone's situation is different, and there are some people with them on here. For me, now having mito surgery is not a good option for me at all. Glad we chose not to go that route. I'll say a prayer for you goodnuff77.

Bellamia xxxx's

[Brye]

Bella Mia is so right. Everyones situation is different. My pacemaker was placed to control my bradycardia. My low rate is set at 60. I got the MRI compatible one. I don't have a high rate setting. My high rates are pretty well controlled with my atenolol. My problem was without my atenolol my heart would race, with my atenolol it would drop in the 30's. My syncope was from the tachycardia but now I think is more from the hypotension. The pacemaker won't necesarily help that unfortunately. My hope is it may help with my lightheaded moments and give me a little more energy. It will make adjusting my atenolol doses easier as well. Such a tough decision. I agonized over this one for a long time. I had 3 cardiologists recommend a pacemaker at various times.

Hopefully it will help. I figure if there's any chance at all of it helping it's worth a try. I have 4 kids to keep up with. Good luck with your decision! Hope your cardiologist can give you some good advice. I was thankful to have a very thorough cardiologist who agonized over the decision as much as I did.

Brye

[goldicedance1]

I have written about this numerous times. I have had POTS since 1994. I am pacer dependent. Some on this forum speak about older pacers and not the latest on the market;

Goodnuff--Perhaps you should to ask your EP doctor about the Biotronik Evia Closed Loop Pacing System. It can make adjustments that no other pacers can make. It can make adjustments due to changes in the autonomic nervous system. Dr. Grubb has been implanting this type of pacer in patients with POTS,

If your doctor is not familiar with the Biotronik, it may benefit you to find an EP specialist who is.

This is my 5th pacer. I would never get a pacer that cannot be adjusted for changes in exercise levels.

My pacer is actually set with a minimum pace of 80 due to bradycardia coupled with tachycadia. It also has a maximum HR of 130 (possible 120). I just got this pacemaker on Halloween at the Mayo Clinic. Dr. Grubb wanted me to get this pacer last year when I saw him but Dr. Kusumoto preferred for me to wait until my St. Jude wore down. given the risk of surgery, infection, blood clots, etc.

The Biotronik is noted for its ability to help with sycope!

As far as ablation/pacer/ablation/ pacer goes, I noticed in the POTS newsletter, that there was a research study that noted that in some cases this might be the best route for intractable POTS cases.

Good luck with your discussions with your doctor. I can't strongly encourage you to find out about the Biotronik.

I did initially have some difficulty getting it adjusted. It took two trips back to the EP clinic to get the settings right but now it is ok.

I wouldn't settle for second best.

Many doctors/hospitals prefer to use one pacer over another because they can get it cheaper or it is easier to adjust, etc.

If you would like more information, you could google Biotronik and Evia Closed Loop and Dr. Grubb.

The Biotronik Evia also has another feature. I have a device on my nightstand. Every night, without me knowing it, it monitors my pacer to be sure it is functioning properly. If it detects something, it sends a notice to the Mayo Clinic. Every week, it sends a report saying all was clear.

If you are going to get a pacer, be sure it is the right one. A pacer is not the end of the world. Many doctors shy away the from the Biotronik pacer because of its sensitivity in terms of adjustment. There are doctors who are knowledgeable about this pacer, though.

I know that Dr. K had to get in touchj with Dr. Grubb about the right settings. My settings were more of a challenge because of the ablations.

Let me know how it goes.

[goodnuff77]

Bella and Brye like I said the pacemaker was talked about in the begining but we decided to go with the med route. I've become very sensitive to the meds and the one's I'm on now aren't working. I'm torn because life is becoming very tough to keep going like this and even harder as my kids get older. I get short of breath very easy with severe chest pai with my tachycardia along with syncope. But on the othe side theres days I cant function due to the hypotension. Since 2008 I have over 300 pages worth of dr notes and test results stating my condition is getting worse. (That was a big help for SSDI) I think I'm just feeling hopeless and ready to try anything that might give any kind of relief. But as I found with my Port A Cath surgery Dr's dont always tell you all the facts. They told me the port was good for 5000 needle insertions. But I found out the hard way when it's in use 24/7 I was lucky to make it a year before it needed to be replaced. So I'm just looking for people like you guy's that have more realistic experienses than the dr's seem to have.

[goodnuff77]

Goldice my dr and I where talking about the biotronic. I just dont understand how the exercise feature works. Do you still have to take beta blockers or anything with it or does it controll the heart rate completely?

[Lemons2lemonade]

Hey goodnuff, I am sorry that your condition has gotten so out of hand and that you are suffering. Whichever you decide, just make sure that you have realistic expectations of what the results are going to be by putting the pacer in. I think in modern days, we expect surgery to be this magical procedure that makes everything better. If I were you I would talk to your doc and those with pacers about what will and will not be resolved by an implantation.

[goodnuff77]

I am hoping that some people here with pacemakers could give me info. I cant seem to find any answers to my questions online.

Lemonsin's

I had to edit this.....I'm not sure if I'm being sensitive, stressed or just tired ( very anxious about all this) but I know surgery isn't a MAGICAL PROCEDURE. Look up and you'll see I'm asking qeustions about some of my concerns with people that have pacemakers. Like I said before Dr's dont always give you all the needed info about procedure's. I just know I'm at a loss. meds aren't working and what little lifestyle I have is suffering. Need to try something.

[Lemons2lemonade]

Awwww sorry wasn't trying to be rude. I just want you to have what's best for you. I was talking more about myself with the whole magical thing. I had knee surgery in high school and expected the pain to go away. It got worse for me, and I just don't want to see that happen to you. Another time earlier this year, they found lesions in my brain, thought that I had ms, and gave me a steroid dose consistent with that of an ms patient in a full blown flare. I thought it would cure me. The next 3 months were the worst I have ever had in my entire life. It made the anxiety and tachycardia worse. And I started to hallucinate from it. And they couldn't do anything for me because it was already in me. I had to be sedated and that sedation made it worse.

[ramakentesh]

Do you have POTS or NMH/NCS?

The general consensus among POTS doctors is that pacers often dont improve symptoms of POTS. Remember in most cases tachycardia is compensatory rather than the primary problem in POTS. Im curious that the same doctor that suggested that you not try licorice now wants to place a pacer in you despite there being pretty compelling evidence that it rarely helps in POTS.

I know one patient that had a pacer and it helped her. The proband with Net deficiency had some improvement for a while but her symptoms came back.

Without wanting to be negative, some find that they feel worse after pacer.

Most likely it might stop you fainting.

[goodnuff77]

Ramakentesh

It's acutally my primary dr that wont let me try the licorice because of the side effects. But it's him the cardio and someone from the clevland clinic that he's been talking that are recomending the pacemaker. They want to try to bring the heart rate under control. I dont know about the pots or NMH/NCS. I dont know all the med terms and dont understand most of what the Dr's say to me. All I know is when all the symptoms started the did a cath ablation and the tach has been out of control since then. As I'm feeling more helpless with the Dr's I'm trying to do more of the research on my own. I can honestly say I have no idea what 99% of your posts are about. Just trying too gather as much as I can, And hopefully something gets figured out.

[issie]

goodnuf,

I so feel your frustration and desperation. I'm like you a good bit of the time with my understanding - sometimes, my brain will work well and I'll get it and come up with ideas myself. But, other times I might as well be reading greek. But, one thing I've learned is the more I read, the more I understand. The only problem with you in regards to that - is you have to make a decision in a few days. Just focus on the main things and don't try to understand it all. Talk to your doctors and tell them of your concerns and ask percentage questions about sucess vs. percentages of those that don't get relief. I know there are a few who do have pace makers. You might try PMing them and ask question directly to them. If you want to PM me - I can remember at least 2 people that I remember have them. Of course, I think it would be okay for me to say their names. Just not sure. If you found it to be not effective would there be any problems in removing it?

I feel for you, it's a big decision and I hope that whatever you decide - it turns out to be a good decision and helps you to get your life back.

Issie

[ramakentesh]

I think the doc at Cleveland clinic seem pretty good value from what ive been told and read. So I guess you would have to trust their judgment.

[goldicedance1]

No offense to you all....but your cardio is best able to answer your question about the exercise feature.

I am so glad that your doctor was talking about the Biotronik. He knows what he is talking about.

A temporary pacemaker;...they only use that in the hospital in an emergency situation when they cannot impant a pacer fast enough as in you might be having a heart attack an need one implanted bedside. Or you are having a procedure done in the ep suite an need a temporary pacemaker.

Goodnuff-- I agree with the advice your doctor is providing.

In the old days of pacers, they were fixed to mimic the rate of an old person shuffling down the street, perhaps using a cane. They did not accelerate. Later generations did begin to accelerate when it could detect changes in heart rate.

The Biotronik is the Rolls Royce of pacers. It is the latest generation. It has specific advantages for people with autonomic problems and helps deal with syncope. I do not represent Biotronik. I have a Biotronik.

Let me know Goodnuff how it goes.

Dr. Grubb has published an article about specific settings for people with autonomic problems, like POTS. Your doctor probably has it or can get it from Dr. Grubb's office. I had a copy of it but I am not sure I can find it. It might have been in the Journal of Pacing.

[goodnuff77]

Goldice I was looking up the biotronic this mourning. Not alot of info but my Dr is familer with them and likes the fact of the weekly print outs to his office. I did see about the high and low range settings. Also the positive study Dr. Grubb did on them. Still have alot of questions to prepare for for wednesday I just wish I could find more anwsers before then so the Dr wont try to push me in any certain direction that may not be right for me.

[goldicedance1]

I know I felt much better after my pacer. If he was talking about an ablation, that's a different story. A pacer can always be turned off. There are many adjustments.

Sometimes it's a good idea to trust your doctor.

I am so glad that your doctor was talking about the Biotronik. If he wasn't, then I, too, would be having some doubts. The Biotronik is being using in many cases of orthostatic hypotension with syncope.

Sometimes it's a good idea to trust your doctor. It sounds like your doctor is an EP specialist. If he is comfortable with the Biotronik, that says alot.

I used to have a St. Jude. While that was an advanced model, it did not have all the advanced features of a Biotronik. I am100% paced. The Biotronik for me should last about 8-9 years. For someone not 100% paced, the pacer might go for 15+ years. The pacer is very small--about the size of a quarter.

Please know that all of us on the forum wish you best and willingly share our opinions, but your doctor knows you best!

[Brye]

Sorry, I understand your frustration. It's so hard with kids to keep up. I also understand the guilt when you can't make their games or play in the yard with them. My oldest 2 are 9 and 8 and it's so hard to explain to them why!! I was approved for disability several years ago. That extra money has been so helpful with medical bills. That money however also goes toward my house cleaner who comes every other week and extra child care/programs for my kids so they can get out some of their energy and socialize with other kids.

I feel like I did get the pacemaker that was best for me. I'm not pacer dependant and don't really need it to slow down my rates since the meds have been working. If my pacemaker does stop working fortunately my heart will take over until I can get in to see a doctor so not sure all those daily checks would be necessary for me. Hope you find something that helps soon! Hang in there. I feel your frustration. I'm the eternal optomist and really try to remind myself all I have to be thankful for. That tends to get me through some of my rougher times!! Take care, happy to answer any questions you may have best I can but I think I've shared it all now!

Brye

[mully2014]

Ummm I'm now in the same boat you are/were in not exactly sure what you decided but if they haven't done the pacemaker yet have them have you wear an event monitor. We are currently discussing if a pacemaker is an option but we will decide this after i get the results from a 30 day heart rate event monitor.

I have much of the same problems you are having too and just found out yesterday about this being an option again. Have a couple of days to come up with questions. I understand what you had/having to go through.

Hope it all went well for you whatever you decided

[tinkerbella]

I WILL SAY a prayer right now that the right decision will come to all of you ~ Like Mully's hand says, have H O P E everyone. (((((HUGS))))) love, Bellamia ~

[mully2014]

Thanks so much BellaMia!!! Definetly need the guidance right now!

[tinkerbella]

Wish I had an answer for you...but I can pray again now Mully ~ I struggled when I had to finally had to have a portacath after 4 1/2 years that runs 24/7 ~

Hang in there ~

BellaMia ~ x's

[Brye]

So tough. I had an implanted loop recorder for almost 3 years before deciding on the pacemaker. Good to do the 30 day event monitor for sure. Hopefully those results will make it more clear for you. I have had mine in 3 months and I have noticed so far my ankle swelling has almost resolved and I dont' have any CP sitting around the house anymore. Still too early to tell if it's going to help with other symptoms yet. I had a stretch of bedrest due to a blood clot after surgery and I'm still trying to recover from that. I know POTS isn't caused by deconditioning but for me I regress quickly if I don't get up and move each day. Hope you find a clear answer soon!

Brye

[ddschool]

I received a pacemaker almost 2 years ago. I got it b/c my bp meds would kick in my vagal nerve & lower my hr even lower than it already was (40-50s). At first, I had a hard time sleeping b/c my body wasn't used to the higher hr. The pm has helped my hr, but not my bp, fatigue/weakness, etc. I thought getting a pm would drastically improve my condition, & it didn't. I'm not saying I wish I didn't get it, but I don' t feel like I thought I would.