Ablation Versus Tachycardia - Some Ramblings

[goldicedance]

As many of you know, I got a sinus node ablation back in 1996 before there was evidence that such an ablation was not a panacea for POTS and in fact can make things worse. After the SA ablation, I developed bradycardia. So, I needed a pacemaker.

With the pacemaker and the ablation, my heart rate did not soar (i.e., previously, 160 brushing my teeth). I still had other POTS symptoms--blood pressure drops, lightheadedness, bad temperature regulation, migraines, and the list goes on. However I then began to get junctional tchycardia...as my heart really wanted to beat fast because of POTS but couldn't because of the SA node ablation. I really felt terrible. It felt like my heart was thumping and made me extremely short of breath.

I gave in and got an AV node ablation to eliminate the junctional tachycardia. I am pacer dependent. I am paced at 85 bpm (a rate set by trial and error) and my hr very rarely goes over 110.

The cons of this technique so far to me have been: (1) pacer dependency; (2) no MRIs, and (3) problems when I needed radiation. I have difficulty exercising (which I rarely do) because of the pretty constant heart rate even though my pacer has capacities for increasing the hr when needed.

After reading so many posts about bad tachycardia, I am beginning to think that the ablations and pacer route might not be so bad after all. While this route did not eliminate the POTS, it has eliminated really high swings in hrs.

I am wondering now whether the doctors who came up with the finding that ablations were not the right way to go really understood/understand how awful we feel with bouts of tachycardia that land us in the hospital, the ER, or unable to really function.

After being diagnosed with POTS in 1994, I have had numerous hospitalizations due to exacerrbations in POTS. I am thinking that I would have been in a worse situation had I not had the ablations and pacer given the difficulties many of you here are going through.

Nevertheless, I managed to work until 2005 when I stopped because of POTS problems, gall bladder problems, and GI problems. My job involved substantial international travel. I managed to keep up although I did have many absences and extended leave. My employer was very kind to me in allowing me to work at home 3 days per week. That enabled me to be able to start work much later when I was able to function. As we know, mornings are a bear. I was also able to put my feet up or even stretch out in a recliner when I felt the need and yet continue to work on a laptop or read.

I also have continued to push myself to carry on during the day. There are many days when I would feel better in bed. Paradoxically, I know that if I stayed in bed I would get more deconditioned and the POTS would get worse.

These are just some thoughts.

[AJVDK]

I kind of understand where you are coming from. Now more then ever, I have had two abltions, and a pacemaker placed. I am starting to have tacky stuff again, and my doctors, keep saying now that they know Ihave pots they don't want to do another abltion, I think I would do better as now I get the heart racing, and then it slows down and the pacer kicks in. I can feel when the bottom chamber of my heart kick in ( the pacer), I am sure it's a setting on the pacer, but you know thats been a bad deal for me. They have already said when this pacemaker goes they are doing to put a better one in with more settings, ( not sure what all that means)

Anyways, with that said, now my b/p has become more of in issue since the ablitons, I somtimes think was is there all along, and it was just the heart rate that I notice more? I guess I will never know.

They one thing I do now is when I was at Mayo, and Cleveland both doctors said I should had never had the ablitons since I had POTS. I am not sure to this day the hole reason behind there thoughts, I do now I have not felt good since my pacer was placed, but would I have felt good if it wasn't there (pacer) I am not sure. I does make you sit and think!

Good Topic!

[gdomaracki]

The tachy is your bodies way of trying to raise your blood pressure, when it begins to drop.

It means that your body is compensating for something and you need this.

[mom4cem]

I just had a tachy attack. Not to high but according to the readings I varied from the 70's to the 105's. I took my bp and only really the systolic was high...129/131 the diastolic did not change much,,around 81.. I spend most of the day either normal or low like 110/70 or 105/65...I sent over my reading and they said it was sinus rhythm and o.k.. Certainly does not feel o.k.!!

I don't think mine has anything to do with blood pressure though since it seems to be o.k.,,unless it really drops prior to an attack and I just cannot tell. I can just feel the uneasiness before the attack comes on.

Ablation scares me but reading what you both had gone through, it comes down to the lesser of two evils...

[goldicedance]

That is true regarding the cause for the tachycardia. However, in my situation, mestinon works very well to stabilize my blood pressure. Midodrine worked ok as well though I didn't like the creepy crawlies I would feel and my tendancy to have high blood pressure.

Just some thinking going on...

Honestly, before I had the AV node ablation, I felt terrible as my HR really wanted to accelerate. My sinus node still has some residual "power."

The problem going with the ablation route is: It is permanent.

Quite frankly I do not know what I would feel like had I not had the lst ablation followed by bradycardia followed by junctional tachycardia followed by AV node ablation.

I do know that the bradycardia was a result of the SA ablation because my heart still wanted to beat really fast as a result of the drops in blood pressure.

I would be interested to read about how the doctors came up with their conclusion.

I had my first ablation in 1996 when POTs was not known in the general medical community. It was the only way to slow down my runaway heart rate. Right after I had the ablation, I developed bradycardia. My internist hospitalized me because she wanted to see once again if rocephin would help (thinking I may have Lyme) before I got the pacer. While hospitalized, I was doing even worse. She began doing a lot of research on my symptoms as her office was closed due a water main break. It was at that time that she discovered a doctor at Georgetown who understood my symptoms and was doing clinical trials with midodrine. I tranferred from one hospital to another and, as they say, the rest is history.

[Guest sonotech]

I have tachycardia EVERYDAY and it drives me crazy. My POTS doctor told me (when I first saw him) that ablations were not recommended for POTS patients, and that it can be quite traumatic.

Well, here I am (no ablation) and have tachy everyday with hrt rates reaching 170's (sometimes higher, but not too often). I have been taken OFF of ALL BB meds due to hypotension and there are many nights that I can't go to sleep cuz of the tachy.

It is really hard to sleep when your heart is racing. So, I have to live with this....can't take meds to slow it down, I get exhausted from the tachy, chest pain, shortness of breath, etc. It is frustrating because I always wonder if it is possible to "wear your heart out", I mean.....how long can your heart race without causing problems.

So, I, being in the position I am in would TRY an ablation just because I can't stand living with these heart rates. When I ask my doc "what can I do about the tachy, because it drives me crazy?", he just says...."thats just part of the disease. THAT frustrates me.

[labas_2u@shaw.ca]

I am really glad this topic came up...

My cardio wants to set me up for EP studies and ablation....

Don't know what to do

I take 50 mg Atenolol for the tachy but it does always work. although it has helped with my resting tachy which was 110 before the Atenolol. However, my BP is all over the place usually very high (highest 210/134)

Would I be a 'better' candidate for ablation?? Really would like to know because my cardio is pushing it.

Maggs

[Guest Julia59]

Dr. Grubb wanted to do an EP study way at the beginning of my POTS diagnosis. I was too scared to have it done, so it was never done.

I wonder---do any of you experience tachycardia on the beta blockers often? I still have it---and I take 60 mgs of Propranolol a day---20mg---three times a day. Not a huge dose, but with BPs running so low lately---I don't think I could take more then that. I was also given a prescription for clonodine---but I'm afraid to take it because of the low BP.

I have a implantable cardiac loop recorder, and whenever I get it downloaded, it says I have tachycardia---even in my sleep. I know when I'm having a spell because I feel very uneasy/shaky/and on the verge of panic. I never measure the HR---why?---because it would make me more anxious.

One of my old PCPs said tachycardia and ADHD don't mix----because of the ADHD----the tachycarida seems more magnified, and much harder to manage..................

If I would continue to get worse on the beta blockers---I may consider other options like the ablation route......... Julie :0)

[Laura]

Lois, I've often wondered about this as well. I've not responded to any of the meds tried over the last two years and so am not medicated and have nothing that helps me through. I often wonder if things would be more managable with an ablation/pacer.

Maggs, it wouldn't hurt to have the EP study done to make sure that you don't have any accessory pathways happening that could be contributing to your condition. It would give you more info about your situation at any rate, and you don't have to agree to have the ablation done. If an ablation is performed to eliminate an accessory pathway, that should not have any negative effects on your POTS. It will just eliminate that particular pathway which shouldn't be present. Try and do some online research, and have a look through some of the old posts on this topic for more info.

Laura.

[mom4cem]

Julie,

I still get tachy even on the beta blockers. I think it can only keep so much to keep the adrenaline at bay. I feel the uneasiness also and know my rate is going up though they say it is always in sinus rhythm and just sinus tachycardia..still is difficult to deal with.

[dizzygirl]

yeah julie i still get tachy on bb's (but you allready know that!! lol)

Um I went in for an ep study in november.. cant say that i'd want to have another done.. for over3 years.. once i was even prepped for an ep study w/ possible ablation and was in the room.. and the doc changed his mind after seeing me on a ttt...that i had done right ebfore i was suppose to have the ep.. my bp dropped to the low 60's/like 40 something i think...

also lois, i had to chuckle when i read tht your Hr got to 160 just brushing your teeth... not b/c it is funny.. but b/c it insane how fast our rates go just doing simple tasks. during a aprticular hospit admission my that watched my rate shoot to over 175.. in under a minute .. and you know waht i was doing?? brushing my teeth.. just standing and brushing my teeth.. its obserd...

several docs have talked to me about a pacemaker... and that if I had an abaltion done that it could infat make me alot worse.. and for that reason..

I've opted to not go the ablation route.. I'm terrified of ending up with my pots being any more worse then it allready is.. but i sure would like to get rid of my 200+ heart rates...

but i can see how getting rid of the tachy would be a priority.. as it really is rough and hard on the body... and bb's just dont always work well either!!

my dear friend.. she has pots too, and she had an ablation in 2004?? i think .. and she no longer has the really high tachycardia.. but the poor dear faints daily.. and she is now getting tachycardia upon standing all the time now.. i mean more then she was getting.. her body is fighting hard to keep her conscious if she is upright.. its very sad..

good topic lois!

[Sophia3]

better tachycardia than hitting the floor daily with concussion!! Just my two cents!

I know many ruined by them. One got an ablation and never went back to work after that. Also as some become pacer dependent, the get low BP and STILL faint and risk bodily harm.

This is a good subject indeed. Need to do homework on this one.

[Jacquie802]

Hi,

I still get tachy even though I am on BB.

I also had 3 EP Study's and 2 Ablations. I had SVT/PSVT...I don't have nearly as many episodes as I did before, but I do get a few every once in a great while, but my HR doesn't get as high as it was before. I know that one pathway was left intact because it was too close to my heart's natural pacemaker to ablate ( I didn't want a pacemaker) so my doctor got rid of the other ones and left that one.

Jacquie

[yogini]

I agree with Sophia. I wouldn't get an ablation without getting several opinions - and checking with one of the leading drs such as Dr. Low or Grubb.

[labas_2u@shaw.ca]

Maggs, it wouldn't hurt to have the EP study done to make sure that you don't have any accessory pathways happening that could be contributing to your condition. It would give you more info about your situation at any rate, and you don't have to agree to have the ablation done. If an ablation is performed to eliminate an accessory pathway, that should not have any negative effects on your POTS. It will just eliminate that particular pathway which shouldn't be present. Try and do some online research, and have a look through some of the old posts on this topic for more info.

Thanks Laura;

I never thought in terms of separating the two procedures. I was just thinking of EP/Ablation as one.

I see my cardio tomorrow. For sure I'll do the research ASAP and be ready with more (better) questions.

Any websites recomended??

Thanks

[Laura]

https://www.healthatoz.com/healthatoz/Atoz/...f_the_heart.jsp

http://www.hrspatients.org/patients/heart_...ology_study.asp

http://www.hrspatients.org/patients/treatm...ac_ablation.asp

http://www.londoncardiac.ca/pages/ep.htm

Maggs, I don't have a terrific site to direct you to, maybe someone else has something better? (hopefully these links work.) These are basic intro to what it is and what they do. Hope it helps. I hope you have a very good appointment tomorrow and be sure to voice all of your concerns. Laura.

(if it is not ok to post these links, please delete as needed! I'm not sure how that works. thanks!)

[CDJ]

I just had a sinus node ablation 2/28/06.For the first 45 days i felt FABULOUS!! My color was better,my thoughts were sharper(even though my doc insists she didn't go near my brain) prior to the ablation my hr was 160-180 ALLLthe time.After the ablation It went down to between 80-130. Near the end of the second month my hr would drop to between 40-50. My fainting spells would come on much faster and more often.While the idea is that my hr did not need to exceed 100 to bring up my bp,I now believe it does for a reason. Now my hr has come back up to my original 160-180. I am back to feeling just as I have for many years. The doc said she would need to do a second ablation. This time being more aggressive and putting in a pacer. She is contacting Vanderbilt this week t have me seen down there before she would do the second ablation,her thinking is that this should be a last resort because of how it affected my fainting spells. There is comfort in having a slower faint as oppposed to a low hr and less fatigue. I also seemed to have more fainting spells after the ablation. I also exprienced a "Pause" in heartbeats,which is very bizarre.The pause scared me more that anything because it felt like my world was on hold for a few seconds and I had no idea when or where or for how long.This decision is a very personal one and obviously a crap shoot. It just totally stinks that we are faced with these types of decisions when there doens't seem to be a standard for how our bodies will react.If I could get back the first 45 days after the ablation I would be the happiest person in the world,But in the doctoors opinion there is no explation for why I felt so much better and it turned so bad,other than my fatigue was reduced for that period.The one question i would ask myself and did was,how many success stories are out there for ablations that are not responding to this post because they are back to living their lives and no longer looking to this site for answers.I have talked to docs that say that ablations are a 50/50 shot for people with pots. What I wonder is where are the 50% that did get relief from their procedures??????My doc has [atients that were as severe as I am, in their 40's that went back to work and are maanaging their symptoms but have basically gotten their lives back. I don't know if this helps because I am still not sure how I feel about ablations even after having one.I think it comes down to what we are used to following,our gut. Sorry if this confused you but isn't that one of our common symptoms,CONFUSION!!LOL!!Good Luck to you,and all of us that are faced with this decision.Great Topic!

take care,Cindy

[goldicedance]

I should clarify...the sinus node ablation I had botched up my heart rate. I did not get plain tachycardia. I got tachycardia with big pauses...Hence, the pacemaker. The doc that did the sinus node ablation did not ablate the sinus node fully (whatever that means); I was left with some natural rhythm which included pauses because of the damage to the sinus node. The pacer helped with the bradycardia. I was still left with junctional tachycardia (caused by the POTS wanting my heart rate to go higher). Then I got the AV node ablated. Then I began to feel somewhat better although still get the POTS symptoms.

For those out there with the sinus node ablation...perhaps you are now dealing with bradycardia (a pacer would help) or junctional tachycardia. The Junc. tachy. was worse than regular sinus tachycardia. Before I had the junctional node ablated, I had an EP study done to see whether it would be beneficial. It was. I waited several weeks to think about whether I wanted to get the AV node ablated and be fully pacer dependent. I decided to go ahead with it because of the terrible junctional tachycardia.

More ramblings...I certainly did not intend my post to be a recommendation for an ablation(s). In fact, my POTS specialist (once I found one) said I would have been easier to treat had I not had the first ablation. Perhaps or perhaps not. I remain a complex case because of the ablations and POTS combined. I am indeed a "case of interest."

[BEE]

Just wanted to pipe in that I also had an ablation and was told I never should have had it..I had the AV node ablation for AVNRT(or what they thought was wrong) and Many docs have said it was probrably POTS back then.

Belinda

[Jacquie802]

I think the docs should be completely positive that POTS isnt the culprit of the tachy, before they do an ablation. I wore a heart monitor for 6 months total through out and based on what I was doing and the EKG results as well as heart monitor results they concluded that I did indeed have an arrhythmia.

[Sophia3]

Years ago, when I first found NDRF and discovered my illness...the number of folks that WRONGLY had ablations that I heard about on the boards and some on the phone who were messed up for life, were STAGGERING.

It's a drag trying to deal with what nature gave us but I would rather put up with the tachycardia then to put up with faintiing. I have terrible presyncope and often non stop some days and am bedridden..... but at LEAST I GET A WARNING I need to lie down or squat down with knees to chest. I know so many who are BANG down and awaken wondering what the **** happend and cracked bones, concussions. It's very sad.

Dysautonomia alone is NOT FIXED with ablations. If you have a separate cardiac issue that is a whole nuther story, well that's fine. but it's still a risk if ANS testing hasn't been ruiled out. Interpretation to testing being everything.

While it may ease the tachy it ofen leads then to pacers and pacer dependency. AND faintiing. THEN from low BP. Also many docs jump the gun with a PACER when often a crashing BP is the issue for fainting. But I do not know why I am adding to this thread again. It's kind of redundant.

I would not do an ablation for a million dollars. Pacers are good, IF and ONLY IF you can guarantee the pts, after many detailed testing that docs often SKIP, will not faint. So, again, you have to do scads of homework on this subject.

Sadly, many are often hurriedly put on pacemakers as well. Docs can make easy money at the expense of pts. PLUS unless they are astute on dysautonomia, they try to play God. Just my two cents.