Pots And Ist. I Can't Take Beta Blockers Anymore And I'm Considering An Ablation.

[london]

Bisoprolol has been keeping my resting heart rate down to about 70, but I discovered I have a severe allergy and need an epi pen and cannot take beta blockers anymore. I'm on the highest dose of a calcium channel blocker (Cardizem) and my resting heart rate is still about 110 and shoots to about 160 if I stand or walk longer than 5-10 minutes. I have pretty bad inappropriate sinus tachycardia with mild POTS that is worsened by the extent of the IST. I'm nervous about the ablation and the posibility of needing a pacemaker after, but if it helps the tachycardia I'm willing to take that risk. Has anyone here had an ablation?

[Kellysavedbygrace]

I have not but from what I understand ablations are no longer regularly recommended as a protocol for treating POTS. I would suggest you get a second opinion from an Electrophysiologist at a major autonomic dysfunction center (if u haven't already) such as Vanderbilt, Mayo, MN or Cleveland Clinic.

As a side note, I have POTS, IST and cannot tolerate beta blockers. This allergy/sensitivity is common for patients with Systemic Mast Cell disease.

[peregrine]

The electrophysiologist and I talked about an ablation when it was thought to be atrial tachycardia with some weird ANS symptoms (she and I now agree that it's just POTS - not in the minor sense but in the "no conduction issues in the heart" sense) and she agrees I was right to refuse it in favor of medications. In my case an ablation would have been tricky, since the abnormal p-wave forms were only present during POTS symptoms (figures! she now says that it's just POTS) and they might not have been able to get them to trigger during the electrophysiology study, at which point they wouldn't have been able to do anything (they have to localize the site of the electrical conduction issue to ablate, which is a problem if the issue is intermittent, only triggered by exercise, etc). Yet another reason for me to refuse, personally, though with IST I think it's easier to find the problematic site, since the SA node is pretty well defined.

If I recall correctly, the main reason the literature suggests avoiding ablations in POTS is that the tachycardia is nearly always secondary to something else - secondary to blood pooling, secondary to a hyperadrenergic state, etc - and that doing the ablation may not stop the tachycardia (because there isn't an underlying electrical issue) and may make you worse if the tachycardia is actually a response to a need for additional cardiac output (e.g. in pooling). I don't know how that would work out given IST and mild POTS, though. I'm with Kelly - you might consider getting a second opinion. Is the cardiac electrophysiologist you work with (if you have one) familiar with autonomic nervous system issues at all? Can they/would they partner with a neurologist, especially one who works with autonomic nervous system issues?

I don't think ivabradine is available in the USA, but I'm not sure, and I have no familiarity with it; the only reason I mention it is that it may work in folks who can't tolerate betas.

Good luck!

[london]

I have two doctors on my "team", my general cardiologist and an electrophysiologist. They both threw the option of an ablation around but only as a last resort when I was first diagnosed, so there was never a serious discussion other than "well there is an ablation but thats only for if the medication doesn't work out." For me, my POTS is either mild or non-existant and the diagnosis was an and/or with POTS and IST, but now it seems to be more IST since my heart rate is high all the time no matter what. I haven't had a serious discussion with either doctor yet (my appointment is in a few days.) I'm sure more testing will be ordered to get a more difinitive diagnosis to find out if it is only IST or IST and POTS.

Might I ask how the doctors can dstinguish between POTS and IST? I had a tilt table where my pulse went from 110 to 150 and by BP dropped from about 120/80 to 100/60 and a 24 hr holter showed my average heart rate was 101 where 95 was the marker for IST. Other than that I have had no other tests. I live far away from the POTS specialists you mentioned, but I go to Pikeville Medical Center in Kentucky and their cardiology department is teamed up with Cleveland Clinic.

I don't think ivabradine is available in the USA, but I'm not sure, and I have no familiarity with it; the only reason I mention it is that it may work in folks who can't tolerate betas.

What is ivabradine? How does it work and could it interfere with an epipen?

[Kellysavedbygrace]

Pots is generally defined by an increase in HR by 30 bpm or more upon assuming an upright position.

IST has no diagnostic criteria and is considered a diagnosis of exclusion when tachycardia is not explained by something else.

Actually you are only about a 5 hour drive from Vanderbilt. I'd look into going there before following local docs down the ablation road. If cost is an issue you can look into being a patient in their research center where they pay for the medical costs. As Peregrine mentioned ablation works well if they can find the specific electrical abnormality. Some patients w A-fib and other electrical cardiac issues can benefit from ablation and most local docs have lots of experience w that especially in treating cardiac patients. I'd make sure to get a recommendation from a doc experienced in treating Dysautonomia.

Another thought is to do your own research on ablation in patients w autonomic dysfunction and bring that w you to your appt. Since variable hemodynamics are classic signs of autonomic dysfunction I'd still lean in the direction of Dysautonomia even if you no longer have a clinical presentation of POTS. Of course a doc who specializes in this would be the one to say for sure.

[derekliz]

I have been on Ivabradine since May 2012 and it really has helped me. It is npt available in the US. I order it from a Canadian pharmacy with a RX from my POTS specialist who is a cardiologist and electrophysiologist. He is in Auburn Alabama and I drive 2 hours to see him. He suggested Ivabradine as I was not doing well with beta blockers. I do not have IST...just plain ole POTS.

I met a girl at the gym who had an ablation and she is worse now than she was before. It was only a temporary fix. I would definately recommend a second opinion.

Good luck!

Liz

[london]

I met a girl at the gym who had an ablation and she is worse now than she was before

How exactly is she worse? Is the tachycardia worse or what symptoms does she have?

[cma]

Hi.

I had an ablation done two years ago. I had it for a different reason, so I don't really know, if my post will be helpful to you. I used to suffer from SVT's. My heart would start raising out of nowhere to upto 170bpm and I had to go to ER to stop those episodes. I was terrified to have an ablation done, because I've read that for some it doesn't work or might make POTS symptoms worse. I asked my EP to stay away from my sinus node. It might not be possible in your case, because I think that sinus node has to be partially ablated in IST to stop it. I might be wrong though. From everything I've read ablation might make POTS patients worse, because if sinus node is ablated patients might start fainting, because the compensatory mechanism isn't working anymore.

Calcium blockers did nothing for my heart rate as well and I've started taking a tiny dose of bisoprolol again, because I was tired of fast standing heart rate. My standing HR without beta blockers is around 120bpm and with a dose of 1.25mg it's around 90bpm. The only downside is that I'm feeling more tired even with this small dose.

Is you EP familiar with POTS, did he/she have any POTS patients before?

I have to tell you I was freaked out to have an ablation done, but so far it's been worth it and I would do it again. I had no effect on my POTS symptoms, even though I was hoping that it might be the solution for two things.

[Kellysavedbygrace]

Cma, out of curiosity did they identify a regular pathway or an accessory pathway in the heart (also known as a concealed pathway - not visible on normal EKG) which caused your SVTs? Or something else?

My cardiologist and I have been trying to rule out an accessory pathway for me which from what I understand is rare and hard to spot. Sometimes I'd get high tachs (180s-190s) but never went into SVTs.

[cma]

Cma, out of curiosity did they identify a regular pathway or an accessory pathway in the heart (also known as a concealed pathway - not visible on normal EKG) which caused your SVTs? Or something else?

My cardiologist and I have been trying to rule out an accessory pathway for me which from what I understand is rare and hard to spot. Sometimes I'd get high tachs (180s-190s) but never went into SVTs.

It was an accessory pathway. I was told that I most likely had it from birth, but it's very strange, because until 3 years ago, I never had an indication that it existed. No extra beats, palpitations or tachycardia. My resting ECG's were always normal, but when I went into SVT's they could see something on them, and told me from the very first time it happened that it's probably an extra pathway. It was very scary every time it happened and I hated the feeling of the drugs administered to stop my heart from pounding.

A few weeks ago I had more than a few extra beats and totally freaked out. I though that the same **** was going to start again. I started beta blockers the very next day.

I think that the only way to know, if you have an extra pathway is to have an EP study done.

[yogini]

Have you looked into other medical treatments to hepl your symptoms?. Even though beta blockers are the most logical, other POTS medications help with my HR. For example boosting BP through florinef, midodrine, SSRIs, etc. help may people with high HR.

My understanding is that an ablation usually doesn't help POTS, but it can help other kinds of tachycardia. There are some people here who have done OK with an ablation for a specific kind of tachycardia (though usually not POTS tachycardia). There are also a number of people that had ablations before being diagnosed with POTS, whose POTS got worse after the ablation. I would get a few medical opinions before proceeding with an ablation, preferably from at least one dr specializing in POTS, so that you can make the most informed decision.

[london]

For example boosting BP through florinef, midodrine, SSRIs, etc. help may people with high HR.

I do take midodrine and it helps with the low BP caused by the high dose of beta blockers/ calcium channel blockers, but it didn't help the tackycardia at all. My BP only mildly drops upon standing and I take it really only to compensate for the high dose of beta blockers/ calcium channel blockers, it's the heart rate that is my problem. SSRI's are out of the question for me personally as my family has a very bad history with them (suicidal thoughts with them, my cousin took his life because of it.) I couldn't take birth control hormones because they ALL gave me severe depression, so I would rather not risk any med with a high chance of messing with my moods. For me, emotional pain is much worse than physical pain! The more I experiment with meds the more I see BP/ heart rate increase from posture fluctuation isn't my problem, it's the constant high heart rate. I beginning to think I don't have POTS, only IST. I will mention an EP study at my next appointment and go from there!

[flyingsquirrel]

Who told you that you had to stop taking the beta blockers? As long as the allergic reaction wasn't to the beta-blockers themselves, there is no reason that you can't keep taking them, even with an epi-pen perscription.

I have severe allergies, carry multiple epi pens, and am on beta blockers.

A couple of things you should know in general...

Because of the beta-blockers, you MIGHT need more frequent dosing of the epi-pen should you have an allergic reaction. (This is why I carry more than the recommended two doses.)

If the epinephrine is not effective, glucagon can be given in addition. (Glucagon is a hormone produced in the pancreas that is usually given in diabetic emergencies to raise blood sugar. It also works on a pathway that is independent of beta receptors to increase heart rate and blood pressure.)

Of course you need benadryl and steroids too, but those can wait a few minutes.

It might also be helpful to have a medical alert bracelet and/or a wallet card stating that you have BOTH severe allergies and that you take a beta blocker. The wallet card can outline the exact treatment that you should receive. Feel free to PM me for the text that is on mine (and then clear it with your doc).

I also have IST, beta blockers are the only thing that work for me, calcium channel blockers didn't really do much (although verapamil was better than cardizem), and now I take pyridostigmine along with a beta blocker so that I can get away with a slightly lower dose. An ablation is really the last ditch option for me. They have ok (75%) success rates, but more than half of those recur within a year, and a significant portion of those that do have long term 'success' need pacemakers. From what I've read, if IST and POTS occur together, an ablation is not recommended at all.

[london]

Who told you that you had to stop taking the beta blockers? As long as the allergic reaction wasn't to the beta-blockers themselves, there is no reason that you can't keep taking them, even with an epi-pen perscription.

I have severe allergies, carry multiple epi pens, and am on beta blockers.

A couple of things you should know in general...

Because of the beta-blockers, you MIGHT need more frequent dosing of the epi-pen should you have an allergic reaction. (This is why I carry more than the recommended two doses.)

If the epinephrine is not effective, glucagon can be given in addition. (Glucagon is a hormone produced in the pancreas that is usually given in diabetic emergencies to raise blood sugar. It also works on a pathway that is independent of beta receptors to increase heart rate and blood pressure.)

Of course you need benadryl and steroids too, but those can wait a few minutes.

It might also be helpful to have a medical alert bracelet and/or a wallet card stating that you have BOTH severe allergies and that you take a beta blocker. The wallet card can outline the exact treatment that you should receive. Feel free to PM me for the text that is on mine (and then clear it with your doc).

I also have IST, beta blockers are the only thing that work for me, calcium channel blockers didn't really do much (although verapamil was better than cardizem), and now I take pyridostigmine along with a beta blocker so that I can get away with a slightly lower dose. An ablation is really the last ditch option for me. They have ok (75%) success rates, but more than half of those recur within a year, and a significant portion of those that do have long term 'success' need pacemakers. From what I've read, if IST and POTS occur together, an ablation is not recommended at all.

I was told by my allergist, my pharmacist, and both my cardiologists that beta blockers were a direct contradiction to the epipen and the allergy was a higher priority than the IST (IST isn't lethal, but anaphylaxis without the epipens working and being far from a hospital is.) They lower your pulse and BP, increasing the risk of anaphylatic shock and prevent the epipens from working as well as they should. I live about 20 minutes from the nearest hospital so I can't take any chances with the epipen not working. I already wear a medical alert bracelet and carry a wallet card with all my info on it, though!

What is pyridostigmine? I may bring that up as an option. My doc said we will try verapamil next then wait and see how that plays out first.