Anyone Have Heart Problems???

[APierpoint]

I was diagnosed with POTS in February of this year. Prior to being diagnosed with POTS, I was diagnosed with Inappropriate Sinus Tachycardia in 2006. After 3 Ablations and A pacemaker implanted they discovered there was more to the story. My doctors at Duke sent me to Dr. Blair Grubb in Ohio in February and that's when he told me that I have POTS along with the IST. After the last ablation which I still have my pacemaker, he completely damaged my SA node. I am still having problems with a fast heart beat, however it is coming from my AV node (Junctional Rhythm). They have tried multiple medication but no matter what I try the problem has not completely gone away. The next step if this medication doesn't work (which at this point it isn't) is to have a complete ablation.

I was wondering if you or someone you know might have the same problems. I am looking for someone who might have had the complete ablation and did it work for you? I'm 26 years old and I want to know that this is the right thing to do. I just want to know if I should have the complete ablation (AV node ablation) and will it help me in the long run. Once I have to surgery there is no going back and I am completely dependant on a pacemaker for the rest of my life and the damage is done. If anyone can help me before I have to come to a decision. Thanks- Apierpoint

[Angelika_23]

Sorry I can't help with your decision, but I too have IST and POTS. I have not had any ablations, my rapid heartrate is pretty controlled with a beta blocker. At least, enough so I can walk around and function some. Any stress, like illness, my period or being tired will make me tachy though.

I wish you luck, and hope you find some answers.

Angela

[Heiferly]

I can't give you any advice on the ablation, but just wanted to say I'm sorry you've been through all this and are still having problems.

[Poohbear]

I don't normally make these types of specific recommendations but in your case I feel strongly about this.....

Is there ANY way you can get to Mayo Clinic in Rochester, MN and get your physicians to specifically request Dr. Win-Kuang Shen (there are several Dr. Shen's at Mayo so make sure the request is specific to this Dr).

Dr. Shen is GREAT and he truly knows when and where IST crosses with POTS, when Ablation is truly needed and when it would make things worse. He has cautioned me several times (since I have POTS in addition to other idiopathic cardiac issues) not to let anyone else touch me in terms of ablation. He specializes in neuro-cardiac components of the heart and knows POTS very well. They have been great with my pacemaker settings as well.

I've had mixed experiences at Mayo clinic but Dr. Shen quite honestly has been the BEST Dr I've ever seen there (I personally think he's better and has much better bedside manner than any of the autonomic team in MN (Dr. Shen is in Cardiology obviously and not in the neuro dept but obviously works closely with the autonomic team when needed).

It may take a couple of months to get in but push your Dr.'s to get an appointment with this specific specialist if at all possible.

Please please please consider seeing Dr. Shen before having any further ablations done. You could get worse instead of better if you proceed with another ablation done by someone who doesn't truly understand the complexities of a case like yours!

P.S. I understand what you are saying about your situation but speaking in general terms, everyone on this site with POTS has IST----meaning, POTS, by it's nature, is sinus tachycardia and the rate is inappropriate for the activity level of the person thus almost always inappropriate sinus tachycardia for everyone. I just don't want the terminology to confuse some folks on here.

[valliali]

hi, yes, i have IST and also a PSVT. beta blockers also work really well for me, so i can't offer much on ablations. good luck and please let us know what ends up helping you.

[Angelika_23]

P.S. I understand what you are saying about your situation but speaking in general terms, everyone on this site with POTS has IST----meaning, POTS, by it's nature, is sinus tachycardia and the rate is inappropriate for the activity level of the person thus almost always inappropriate sinus tachycardia for everyone. I just don't want the terminology to confuse some folks on here.

Poohbear,

My heartrate is tachycardic even at rest, which is why I have the diagnosis of inappropriate sinus tachycardia. Take out the postural component, and it isn't POTS anymore.

Angela

[Poohbear]

Angela,

Many POTS patients have high resting heart rates. My resting heart rate is seldom less than 100.

BUT, IST is Not just a high resting heart rate; IST also includes any heart rate that is "inappropriate" given the activity level (which often includes POTS patients)

Either way, Ablation is not necessarily appropriate for either condition

[APierpoint]

My first Diagnosis was IST. My was to the extreme. My Resting heart rate was no less than 130 bpm. Only when I was sleeping it would get around 100 bpm. Any type of movement, walking, lifting, etc.... I was getting to a point where I could not get my heart rate down on my own. I would get over 200 bpm at times and would stay there for a while. I took beta blockers, calcium channel blockers, and ace inhibitors, none of which I tolerated well. Beta blockers made me depressed, lose weight, etc. Ace inhibitors helped my blood pressure but not my heart. One calcium channel blocker I was allergic too. I'm taking one now that isn't working very well. I didn't know when I had the first, second, or third ablation, that I also had POTS. The first thing that Dr. Grubb said was that I should have never had the first ablation. I was worse off in the situation I was in before the ablations. I work as a paramedic and it was getting to a point that I could not care for my patients in the state that I was in.

Does anyone else have recommendations for other Doctors who maybe able to help me???

Thanks

[MightyMouse]

Is doctor Grubb the one recommending the AV ablation? He quite literally has written books on the EP cardiology issues with POTS and ablations... could never hurt to get another opinion, but one would certainly want to know what the risk is of making things even worse for you than they are now.

Nina

[ajw4790]

Welcome!

I wanted to say hi! and that I am very sorry about the position you are currently in. I can't believe it (at the same time I can believe it ) that some drs actually put you in this position. FIRST, I would say please do not go back to the doctors that did this to you if at all possible. I do tend to believe that the ablations were the wrong route to go, and that the drs. should have been much more cautious and knowledgeable before doing this. Then, the fact you require a pacemaker, and things still are not any better... That is crazy! I am glad you got to see Dr. Grubb. I hope that he was of some help for you.

I would say that dr at Mayo sounds like a REALLY good idea. I have also heard that Vanderbilt is pretty good with this type of thing, but I do not know a dr. The also have the ANS Clinic down there that maybe if you were able to work with someone there and in cardio. that they may be of assistance.

I guess I would say give all the meds a good try, and don't jump into the ablation. Try to find the most knowledgeable dr you can find to help sort this out.

You are much too young to have had this all done. I am 25 and can't imagine...

[APierpoint]

Is doctor Grubb the one recommending the AV ablation? He quite literally has written books on the EP cardiology issues with POTS and ablations... could never hurt to get another opinion, but one would certainly want to know what the risk is of making things even worse for you than they are now.

Nina

MightyMouse

Dr. Grubb did suggest that if I continued to have the Junctional Tachycardia and medication wasn't helping, then AV node ablation was an option. From my understanding he hasn't had many pts who have had the ablations done. He did however state that he had one lady in PA that he had to do the AV node ablation and she was doing well. I have called his office in search of this individual and once he remembers her name, his office said they would contact her and give her my name and number. He said she did better after it but I would rather hear it from her myself. I just don't know what I should do. I wish things could be simple.

Thanks

Apierpoint

[APierpoint]

Thank you for listening. Yes this has been very hard for me and my family. I have had a hard time figuring out where to go from here. I want to feel better and live as much of a normal life as I can. I want to have children one day and do things I use to do. It will get better at some point but I having had this problem going on two years after all the ablations and I'm just ready to figure out the right thing to do. I say to my friends "things could always be worse". I think the reason I am a paramedic is to help others that I can really make a difference in their lives, when I can't in mine right now. Thank you again for your concern because I have the same ones.

Apierpoint

[MightyMouse]

We, collectively, have lots of people here in the "helping" professions. Our group appears to have a disproportionately large representation of nurses & other medical professionals like you, teachers, psychologists, etc... Myself, I'm a Behavior Analyst, and I specialize in autism. This group of disorders can be exceptionally hard to cope with--if you read some of the research articles, POTS has in impact on quality of life that is equal to or greater than being in congestive heart failure.

Keep seeking the right options for you. As for Dr. Grubb, if you had been dx'd with POTS, he would never have let you have an ablation as a early line of treatment which perhaps explains why he has few patients in your position.

Nina

[fire_lupine06]

I have PVCs at times

[Lizzegrl]

I am sort of in the same position. I had an ablation a decade ago that worked for a while on the worst of the symptoms, but when it started to get worse again, i started seeing EPs again to get an answer. Dr. Grubb was who I was referred to as the closest and the best in the area. perhaps I could have tried Cleveland Clinic or Mayo which are both difficult to get into, but in all my research and in the opinion of two of the best EPs in Michigan (both EP professors) recommended Dr. Grubb.

When I first saw him, he also said that perhaps if I had been diagnosed wiht POTS before the first ablation, it might not have been done. but now that doesn't matter, it was done. My arrhythmia issues are back and getting worse. Now, the primary goal is to get my rate down and quit the funky rhythms if at all possible. The first line courses of meds don't work on me either, so we are back to the do we ablate again or not? stage

I really trust Dr. Grubb, after having experienced several other EPs, and their approach to patients and diagnosis. He is miles ahead of them. My current EP in Detroit (Dr. Randy Leiberman) would do the ablation if they decide, but he and Dr. Grubb are still deciding if that is a risk worth taking or not. He sent me to Dr. Grubb because he said he was really the best on this subject in the country.

Do you have a local EP that can collaborate with Dr. Grubb to sort of get a second opinion or at least reassure you that you are making the right choices/

[APierpoint]

My EP is at Duke. He has been really helpful and understanding of my situation. He feels like the ablation should be the last option. I feel the same, however I get to a point were I just want it to go away. I have been battling this irregular rhythm for two years after the last ablation. The medication I have tried does work for some people but for some reason they do not help me. I trust my doctor at Duke because he could see that I had another problem and suspected an Autonomic Problem and that's why he sent me to Dr. Grubb. I have mixed feeling of course with making this decision. I don't want to jump the gun to soon and I don't want to continue to be miserable. I just think there are answers out there and I feel deep down that the complete ablation at this point is my only option.

I have other symptoms from POTS which are probably the norm for most people with POTS. I am tired, dizzy when standing or bending down for periods of time (No syncopal episodes yet), Shortness of breath, heat intolerance, etc. I feel that I can handle all of these symptoms with the exception of the irregular heart problem. When I first got my pacemaker it was like night and day. I felt great. Had energy again, felt like myself again. But then the fast rate came back and I have been fighting it ever since. I just think about when the pacemaker was running my heart all the time and how good I felt. My pacemaker is suppose to be running my heart 100% but instead it cuts off and this fast beat from my AV node kicks in and that happens multiple times a day and can last for an hour or more. It makes me weaker and sick to my stomach. I feel that if my heart could be completely ran by a pacemaker that I would not have to suffer like this anymore.

I have always been very positive and my friends are very supportive. Even though they don't know how I feel, they have seen me through this whole process. My husband is also supportive. He wants me to do what I feel like I should do but he is scared of what could happen too. All I think about these days, is whether I will feel better one day. I wake up thinking is this the day that it could get worse or how many times will my pacemaker cut off.

I hate that you are going through the same situation as me. I would not wish this on anyone. I never thought that I would have heart problems at 26. It is so hard to explain the way you feel to people who don't have the same problem. I really feel that if I had not had the first ablation, I would not be able to work, live somewhat a normal life, and be where I am today. Yes I still have the irregular heart beat but I know that it won't keep me from what I love doing. It has not crippled me yet. I really hope that everything works out in your situation and I know that it will work out for me. I just can't rush myself.

thank you

April

[Poohbear]

April,

The potential problem with ablating again is that you may end up back in the very spot you are currently in only worse. They can completely destroy sections of the heart but the heart also has cells that can regenerate and other parts of the heart that can take over and do the job of the former part. It's complicated to explain but think of it like stroke victims or any brain injury---a part of the brain can be destroyed and sometimes it will regenerate and/or sometimes another part of the brain will take over the function of the destroyed part.

You can only destroy so many pieces of the heart before you start having other problems that will be worse than what you have now. Plus, I think 3 ablations is the limit in terms of how many times they will ablate so you may not want to exhaust that option as young as you are.

Hopefully Dr. Grubb can help you but personally, I feel Dr. Wen Shen at Mayo is much better trained in this particular area you are struggling with. Vanderbilt would also be a good option for another opinion but having seen them, I still believe Dr. Shen is the best for this piece of what you are dealing with right now.

I was like you....the pacemaker initially was a life saver for me and got me back on my feet but over time it became less effective as the heart learned ways "around" the pacer.

I do understand how miserable it can be and I feel for you. I started having problems with my heart in high school and have been dealing with these issues for 20+ years.

[APierpoint]

How did you end up with your pacemaker? Was it because of an Ablation? Did you have a junctional rhythm after the ablation? And what treatments have you done or are doing that is helping you by your doctor at Mayo?

It is a decision I do not want to make and I need to know what will work and what won't.

[Poohbear]

I have not had an ablation. I have my pacemaker for other reasons and had it prior to ablation even being a potential option.

I have had lots of Dr's recommend ablation but I've also seen the 'experts' who are trained and cross-trained in this area who were able to explain the in's and out's of my case. I too many be looking at ablation down the road but as miserable as I am sometimes, the risks (for my case) do not outweigh my current situation. It would be great if it worked but statistically speaking, people in my shoes who have had ablations tend to get worse after ablation....not better.

It's a long story that I do not feel up to typing out fully (I am currently recovering from surgery now) but the short version is that ablation was initially offered and I declined because I was still able to work. When things got worse and I changed my mind and decided to have the ablation the surgeon changed his mind. Over the last 6 or 7 years new data had been learned about the potential negative impacts of ablation for many patients with dysautonomia.

You may truly need an ablation but all I'm telling you is that there are very few physicians who are truly trained enough in both dysautonomia and cardiology combined to be able to give you a well educated opinion. The last I heard, there were literally only a few cardiologists who were neuro-cardiologists and most of them were at Mayo in MN.

You have a huge decision in front of you that could greatly alter your life (for the better or the worse)--this is the time when you have to go to the 'top' and get all the explanations and facts FOR YOUR OWN CASE (because everyone's is different) so that you can make the best informed choice.

Being pacemaker dependent is not complication free either. There are problems and arrhythmias that the pacemaker can cause that are not always easy to correct. Again....things can start out great but over the years changes take place especially in the population of folks dealing with dysautonomia on top of other cardiac problems.

Hang in there. Arm yourself with the best knowledge you can get, go to medical libraries and do your own research if possible and weigh all the pro's and con's. Listen to your gut once you've done those things--it will lead you right!

[Lizzegrl]

"I really feel that if I had not had the first ablation, I would not be able to work, live somewhat a normal life, and be where I am today. Yes I still have the irregular heart beat but I know that it won't keep me from what I love doing. It has not crippled me yet"

April, that is exactly how I feel! I have really no regrets about the first ablation because I lived a normal life for several years. I had really good times, did things I needed to be able to do in my life. I also know that back then, things were really not advanced enough to say an ablation was not wise. It is what it is and I'm ok with that part of the process. Now, there is another part that has to be addressed. It is scary as heck and frustrating now, however.

I do agree with Poohbear that it is such a big decision you should go for another opinion, if only to feel that you considered all of your options and made the most informed decision. I had a similar conversation with Dr. Leiberman regarding my desire to get a pacemaker and just get it over with. He said exactly what Poohbear has said. I wanted them to blast away and he refused. ;o) It sometimes doesn't work out in the long run when you just start blasting away all the nodes, so every other option should be thought about first. It really has to be a last resort, and that is why he sent me to Dr. Grubb. I'm not quite at the point that you are yet, so your decision must be more difficult. I feel for you. Having a support network is so important and that is something to be very thankful for. I'm glad you have such a strong one.

[APierpoint]

Thank you Lizzegrl. It's is nice to know that I am not alone (not to say I would want this for anyone else).

In Dr. Grubb dictation notes he suggested "If her junctional Tachycardia persists, it maybe necessary to perform an AV nodal Modification using radiofrequency energy. Should this have to happen, she will probably need a dual-chamber pacemaker and what we have found as of lately is that the biotronic Cylos pacemaker is capable of measuring blood pressure and is much more physiologic in these settings."

You have seen Dr. Grubb and sounds like he is treating your problems. Do you feel confident in his knowledge and his ability as a POTS specialist? When I went there in February, I was hopeful and grateful that I had my diagnosis. He made me feel like I wasn't an idiot like so many Doctors made me feel. He knew everything I was going to ask as if he were in my head already.

My Doctor has informed me today that the medication isn't working and that the ablation is the next step. He can't guarantee it will help me and not harm me. That's is why it is important for me to think and find out if this is right. My doctor at Duke is going to contact Dr. Grubb and discuss other options and determine if this is the right course of treatment. But ultimately it is my final decision.

I am young and I think that is what makes it the hardest. There is so much I still want to do and see. I know medicine is not a perfect science and we aren't the prefect patients. My mom tells me all the time that she would give me her heart if she could and she blamed herself that this happened. Of course she knows that it wasn't her and it wasn't my fault either. We all go through hard times in our lives and this is one of my times. I have a lot to think about and many answers that I still don't know.

I just hope that in the end I make the right decision.

[Sophia3]

Apierpoint

for the record, you do not need to QUOTE EVERYBODY in their entirety. It makes for tedious reading and all you have to do is mention the name of whom you are addressing. Also uses up more space on this site. and some of us get very tired reading more text than we have to to make a point.

THAT said, i have heard of more lives RUINED with ablations in the last 11 years than helped when ANS problems are the underlying issue. I would also see that doc at Mayo as Poohbear has indeed, been dealing with this stuff a long time.

Angelika

i also can have high resting HR but when I change positions, it zooms higher, kind of like your TTT showed you did.

AP

This is all so complicated so please do your homework and do not just take the word of one ANS specialist.

you only have ONE BODY and do not jump into something that can NOT be undone.

Good luck.

[Heiferly]

(To reply without quoting, hit the "add reply" button at the very bottom of the page instead of the "reply" button that has the picture of the quotation marks on it. I'm not sure everyone is always aware of the difference, or is purposely putting the quote in their replies.)

[It'sMyLife]

I am sorry if I missed it in your previous posts. But, would you mind elaborating on what your experiences have been with beta-blockers? I am just now seeing a doc who seems to know what he's talking about. He thinks I have POTS, but if not, at least IST. He said the only way he does ablations for this is if they are severely hindered by the condition and no meds will work. I was on beta-blockers for years and my bp kept slowly getting lower until a month ago I was nearly passing out every time I stood up. I was so glad I had my appt with with CardiacElectro scheduled. So, I'm off my beta-blocker now and on salt tabs and florinef. I seem to have more energy already (could be placebo effect or just the new tachy from no beta-blocker) but I am not liking that I have arrhythmias again and tachy a lot of the time. Not a severe tachy episode but almost always over 100. I am pulling for you that you get some good answers. My new doc did say that the reason he doesn't like to do the ablations is because by the time they get all the affecting node ablated then, there is a high risk of future need for a pacemaker for the rest of your life. I'm thinking I may go back on a low dose of beta-blockers along with the florinef/salt an see what that does. I was always tired on the Toprol but that was before the florinef and salt.

[APierpoint]

Darcy

Give a little background I was in college when I started having high blood pressure and tachycardia's. I was told of course that it was stress cause I was in college. They then put me on beta blocker to control both problems. From then to now I have taken: Toprol XL, Atenolol, Coreg, Labetalol, Inderal, and Bisoprolol. I have also taken Ace inhibitors and Calcium Channel blockers. When I was on beta blocker at first I was really weak no energy and having a hard time controlling my heart and blood pressure. It would drop both of them down too much even on low doses. After the ablations, I was placed on them again for irregular heart rhythm. They made me depressed, lost my appetite and lost weight, no energy, sleeping all the time, nausea with vomiting at times and dizziness when standing (more than normal). Beta blockers slow everything down and that is how I felt all the time. Now not all people have the side effects or very sensitive to these drugs. For some reason I can't function normally with them. I would much rather feel the irregular heart beat sometimes then feel like that on the medication.

It sounds like the treatment you are getting is working for you and that's great. I would stick with it as long as you feel great.

I do not regret getting the previous ablation that I have had. I know how I felt before and I know how I feel now. Yes the heart problem hasn't gone away, just changed nodes but I am a lot better off than I was before. I think we all have to do what is in our hearts. I have read other peoples blogs and how there life is affected by POTS and other disorders. Each person is different. I am lucky to only have IST and POTS. Others have multiple problems. I hope that adding the beta blocker again works for you and you know how you feel and don't let anyone tell you different.