POTS and Ablation?!

[sarah0683]

Hi! I have a few questions and I am hoping some can shed some light on this for me. I was having fainting and dizzy spells and had frequent tachycardia. Was admitted to the hospital feb/09 for a week. I was told by a cardiologist it was his clinical diagnosis I had pots. I had a follow up appointment with my cardiologist. He said he thinks its POTS but I also have atrial tachycardia. He informed me I would be having a tilt table test and he thought I may need an ablation. He stressed the fact that if I had POTS they would not do an ablation until at least my POTS symptoms have subsided a bit and were under control. I began asking him questions on how to cope with my symptoms. He replied "your too nervous about this, you cannot die from it. Just forget about it and just ignore it we will see after your tilt table test" . . . So I waited until it was scheduled. . . During the medication part of the begining of the test while laying, they injected a medicine to test how my blood pressure reacted to it. I had no drop in blood pressure (I cannot remember what it was called I think it started with an "F") I did however have a large increase in heart rate. My hr was in the 90's and jumped to 130. They took blood every so often to do tests on. When I was back down to a lower hr (90's) they tilted me upright and my heart rate went to 145 and stayed there for the remainder of the tilt the cardiologist would not give me isuprel when I was tilted up for some reason and brought me back down. They explained how atropine worked and told me I was going to feel a jump in my heartrate. But I seemed to max out at 150beats so I should not go any higher than that. I was already feeling horrible from being tilted up for 45 min. . . I figured how much worse can this get this should be a piece of cake! They started pushing the medication and she had not even gotten 1/4 of the medication they were planning on giving me and my heartrate started climbing REALLY fast (scared the crap out of me) the cardiologist looked at me and said "sorry, I did not think you would do that. . . If you were standing right now you would not be for long" my heart rate was 195 (they did not mention my bp). Soooo at the end of the tilt I was told I have POTS and its confirmed. . . Then about 2 weeks later I get a call. It was the hospital calling to let me know I am to have an ablation on july 2nd??? Now here are my questions: if atrial tachycardia is not dangerous why are they ablating if my atenolol is controlling the tachy? Is ablation not a bad idea if you have pots? The doctor said this was a last resort. . . Is it possible that they found a more serious arrhythmia when they gave me the atropine? It took me 6 mos to book my ablation previously (was supposed to be last feb but was cancelled due to the doctor having an emerg surgery) this time it was booked and I only have to wait 3 weeks. . . I am quite confused. I have a pre EP/study and ablation appointment tomorrow. Hopefully the nurse can answer some questions.        

[globalhiking]

Hi Sarah,

There are still a few things that are not clear to me -

If your POTS diagnosis has been confirmed, does your cardiologist means to say that on top of POTS you have an arrythmia that needs an ablation?
What kind of problems those 'unruly' cardiac cells are giving you, according to him, and what good will it do to you to have them ablated?

Those are the arrythmias for which an ablation can be beneficial -

AV Nodal re-entry tachycardia (AVNRT)
Accessory pathways
Ventricular tachycardia
Atrial fibrillation and atrial flutter
IST

If you do not suffer from any of those, I think that you should ask for a second opinion. As stated in earlier posts, there are real chance that an ablation will make your POTS worse or will be a waste of time.

Don't feel pressurized to go ahead, it is better to delay the ablation and acertain that it is the right treatment for you than to go ahead and regret it.

[Kavbear]

I know that the Mayo in Minnesota treats international patients, I would assume Vanderbilt University Autonomic Disorders Clinic and Cleveland Clinic would too. I understand traveling (especially to a different country) is hard so I would start with calls. Maybe ask if they have any research material you could access.
I would at least speak to a Neurologist being that POTS involves your brain and ask their input before you have anything done.

[sarah0683]

Hello everyone! Thank you very much for your prompt response! I went for my pre ep study and ablation. It was explained to me that they will be ablating for unifocal atrial tachycardia. Now, with them ablating for this arrhythmia. 1) do you still suggest I get a second opinion prior to ablation? 2)The cardiologist told me he would steer clear of my SA node and AV node. . . If the arrythmia focus is too close to these nodes he will not ablate. Is it safe to have this type of ablation with a POTS diagnosis? . . . My procedure is coming up soon (July 2nd) I am scared to have this procedure done, I almost feel they are grasping at strings trying to get my hour down. I live in canada so I am not sure vanderbilt or the cleveland clinic is an option for me. The only doctors I have within traveling distance to me that are familiar with dysautonomia; more specifically POTS are the doctors that are at the Arrhythmia Clinic I am a patient of. I want to say "thank you" to everyone who has supported me throughout this! I have not posted very much but you all have been wonderful help answering my questions!

[maha4321]

Hi Sarah just saw ur post and i hope ur operation went really well
and i hope ur orthostatic tachcardia improved as well

[Heiferly]

If you need the contact information for the dysautonomia clinics that Kav mentioned above, you can find those on our health page here:

http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

[Kavbear]

I am sorry I do not have the links but wanted to post right away. In addition to the information above I would call Vanderbilt, they are doing large amounts of research to treat autonomic disorders, including POTS.
I am sure they tried doing ablation early on (years ago) and had to install pacemakers in the patients after.

Just as anyone has said get a second and third opinion.
If it were me I would call Vanderbilt and speak with someone, I would at least see if they have done research in this area.
If they can't or won't help I would call the Main Mayo and the Cleveland Clinic

Good luck!

[Heiferly]

You need to get a second opinion BEFORE going forward with this ablation!!!!  Generally speaking, ablation is *contraindicated* in POTS and can actually worsen POTS *permanently*.  This is documented by highly-respected experts in this field in peer-reviewed medical journal articles such as these:

http://www.springerlink.com/content/hn915h7875u72206/
(Win-Kuang Shen, Division of Cardiovascular Diseases and Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA)

"Sinus node modification could be considered in patients with inappropriate sinus tachycardia with persistently increased heart rate IN THE ABSENCE OF ANY AUTONOMIC ABNORMALITIES. Autonomic laboratory testing should be performed to exclude any evidence of autonomic dysregulation." [emphasis added]

(POTS falls under the umbrella of "autonomic abnormality" they describe" and though I'm not looking at the full article at the moment, if I recall correctly this article does specifically mention that ablation outcomes are not positive for POTS.)  This quote is just from the abstract; to get the full article you will need access to medical journals through a hospital or university library, through interlibrary loan (interlibrary loan of journal articles through public library systems involves photocopying and typically involves a fee for the copies, which will nonetheless typically be smaller than the fee for buying the article outright from the publisher), or you can buy the article outright through the publisher (can be rather costly, often roughly $30-40/article).  


http://www3.interscience.wiley.com/journal/119932455/abstract

Pacing Clin Electrophysiol. 2000 Mar;23(3):344-51.
The postural orthostatic tachycardia syndrome: a potentially treatable cause of chronic fatigue, exercise intolerance, and cognitive impairment in adolescents.

Karas B, Grubb BP, Boehm K, Kip K.

Department of Medicine, Medical College of Ohio, Toledo, USA.


This one very directly addresses detrimental outcomes of ablation in cases of POTS; I can't get access to the full article on such short notice but I wanted to respond ASAP to warn you that I would STRONGLY advise you to get a second opinion before going forward with this ablation.  The effects are permanent and the experts in this field have documented that ablation can cause worsening in POTS, rather than improvement.  At the very least, please get access to these articles and ask that your doctor read them and take them under advisement before making the final decision about the ablation.

Best,
-Heiferly.

[maha4321]

Hi Hefirrly
could you pls forward the link to my e mail
***@****
my husband got 4 episods of Atrial fib but he developed postural tachycardia syndrom
he is doing well on bisoprolol 2.5 but we are just worried he may have another episod of A fib
2 if them responded to prprafenon within 3 hrs and last 2 were mild didnt need anything other than bisoprolol 2.5
but we went to EP physiologist today and he gave us an appt for ablation next Wed but when i asked him about potc he didnt give me an answer

[globalhiking]

Hi Sarah,
I'm not surprise that you are confused; I would be too!

What I find most startling about what your Dr said is when you write: "He stressed the fact that if I had POTS they would not do an ablation until at least my POTS symptoms have subsided a bit and were under control."

If your POTS diagnosis has been confirmed, then I think you are right to think that an ablation is not a good idea.
To my knowledge (other people hopefully will correct me if I'm wrong :-) ), ablation is only indicated for Innapropriate Sinus Tachycardia (IST), not POTS.
But the two conditions can be difficult to tell apart.

I got this from one of Dr Grubb article -

✴ SIMILARITIES
Both conditions have the same presenting symptoms, and both afflict women predominantly. In both conditions, individuals will display an exaggerated response to Isoproperenol infusion.

✴ DIFFERENCES
In POTS  - The variations in heart rate on change of position is more pronounced.
               - At rest, the heart rate rarely goes beyond 100 beats/minute

In IST      - At rest, the resting heart rate is often greater than 100 beats/minute  
               - The change in the serum norepinephrine levels is not as marked on change of
                    position as it is for the hyperadrenergic type of POTS.

He goes on saying that -

It is extremely important to differentiate between these two conditions, as the treatment options are quite different.
In particular, ‘radiofrequency catheter ablation’ of the sinus node can make individuals with partial dysautonomia type of POTS much worse, and does not seem to help individuals with the hyperadrenergic type of POTS.

I hope this help.

Keep us posted :-)