Dual Diagnoses (Arrythmia And Dysautonomia)?

[peregrine]

1

Saw the new cardiologist (an electrophysiologist, specifically) two weeks ago. She diagnosed me with some type of supraventricular tachycardia (most likely atrial tachycardia, she thinks unifocal) based on the p wave morphology of my Holter monitor. She also said that the symptoms I've been having are more closely linked with some type of dysautonomia (separate from the atrial tach and not due to an electrical pathway malfunction). Hilariously I almost fainted during our appointment when she started discussing catheterization.

She said she could refer me to a neurologist to talk about the dysautonomia (she thinks it's probably POTS), but that they wouldn't be able to figure much out because of the atrial tachycardia, so it might not be worthwhile. She did put me on diltiazem (120mg nightly) which is helping with the tachycardia, but the spacey feelings I get when walking/standing (which are my worst symptom) aren't getting any better. Seeing my primary care doctor tomorrow; I might ask her about a referral to Neurology. She's been really helpful and very supportive this entire time, so I think she's got my back.

So... is it possible to have both a dysautonomic condition *and* an arrythmia? And, if so, how do you treat them? I'm nervous to get catheterized because of the info on dinet about it not helping with POTS (and leading to dysautonomia at times).

Thanks a ton!

[Katybug]

Hi Peregrine. As far as I know, the tachycardia caused by POTS is an arrythmia (I think any abnormal heart rhythm is considered an arrythmia.) I'm pretty sure that they can still do a tilt table test and verify if you have POTS even if there are other heart arrythmias going on (assuming it would not be unsafe to do the test) as the POTS diagnosis is made based on the change in the number of beats from a supine to upright position. It is not specific to other irregularities in the beats. If there is a chance that you have some form of dysautonomia, including POTS, it will be well worth finding a doctor (a cardio or a neuro) that truly specializes in dysautonomia. Good luck and feel better!

[peregrine]

Thanks for the info! She was pretty specific about it being another arrhythmia as well ("... the Holter is quite suggestive of possible atrial tachycardia and not simply IST"). Going back and rereading her clinic notes (I love docs that send you clinic notes!), she noted specifically that "it may be hard to sort through a clear diagnosis if autonomic testing, such as a tilt table test, produces an actual supraventricular tachycardia [aka the atrial tachycardia she mentions earlier] as opposed to simply IST."

Still, I can live without a fully firm diagnosis as long as I can start doing something about it.

[Darlene]

arrythmia is a symptom of dysautonomia (POTS).

[Chaos]

I'm certainly not a cardiologist, but from what I've learned SVT is more serious than IST or POTS. It's my understanding that most POTS patients have a normal EKG and when we have tachycardia, it's usually in a normal sinus rhythm- just at a faster pace than our activity would account for. Arrythmias can potentially be more serious, depending on the type. That said, ablations have been noted to cause more problems for POTS patients. I'm not sure if the ablations were done to try to cure the POTS or if they were done for a different arrythmia problem that occurred along with the POTS. I need to go back and find those studies.

Hopefully some of the nurses and cardiac techs who are on here can chime in with more info.

[jackiemxoxo]

When I first got sick they noticed an atrial tachycardia just when I stood up. I also had arrhythmia's and was referred to an electrophysiologist. He really wanted to do an ablation and thought it would help me. Luckily I did not have the procedure done because it can make POTS worse and he did not know much about dysautonomia. I think you have to be careful about some cardiologists cause although they can be the most helpful about treating dysautonomia's heart symptoms they can also be unfamiliar about it. Also, because the heart is working so hard and beating so fast it can cause irregular heart beats. Hopefully your neurologist or as I went to a neuro-endocrinologist can help you figure out something. My only recommendation after getting sick is be careful what surgeries you get because I ended up with no gallbladder and almost an ablation before they started realizing it is all connected.

[peregrine]

Thanks for the info! In my case the atrial tachycardia is definitely present (as Chaos notes), but unlike someone with just standard atrial tachycardia I have an orthostatic component as well (hence the lightheaded while walking stuff and other things the rest of you folks talk about). So it seems like both a general electrical system issue (I think of it as an independent city state of cells in my heart that have decided that also being a pacemaker is fun) as well as something with dysautonomia.

Got a referral today for Neurology from my primary care; she says I "keep her on her toes" and agrees that ablation is not the right idea at this moment.

[peregrine]

Also, Chaos, if you find citations or studies on ablation in POTS/arrythmia folks, I would be much obliged. (I don't need pdfs, since I'm at a university, but anything would be quite helpful!)

Also also, if anyone knows of a dysautonomia specialist in the Pacific Northwest (I'm in WA), that would be wonderful; the NDRF site doesn't have anyone within the region.

[andersondebra]

HI,

I was dx with SVT the atrial type after wearing a 30 day event monitor. I was also dx with hyper dysautonomia and there is a difference. My cardio doc showed me on the ticker tape the difference. When you are having SVT you will see the heart rate go from beating at 80 bpm (or whatever your normal rate is) and then the next beats jump right up to 165 or higher and they can stay there for seconds to minutes to hours and then just like flipping a light switch you will see the heart rate go right back to the 80 bpm. On a ticker tape is looks like someone is turning on and off a light switch. Now when looking at the ticker tape with dysautonomia you will see the heart rate go from 80bpm and gradually climb as the adrenaline in your body begins to amp up and you will see within a minute or two or three the heart rate will build up to the 165 bpm or higher and when the adrenaline surge is over (for most of us it is when we stop and sit back down) you will see the heart rate slowly drop back down within minutes back to the 80bpm. That is how they tell the difference between dysautonomia arythmia and having a true seperate arythmia. If I could show you a graph of heart beats it would show for SVT this nice little up and down of the heart beats usually going no higher than your normal rate around 80bpm and then you will see the next little spike up go straight up to 165 bpm and stay up there until it is over and when it is over you will see the spike just drop right back to 80 bpm. but with dysautonomia or POTS you will see the the up and down heart beat around 80 bpm and then you slowly see the next beat go up to 90bpm and then the next beat goes up to 105bpm and then the next up to 120bpm and so on until the heart rate gets up to 165 bpm or higher so it looks like this hill is building, and then when it is over you will see this decline happen where the heart rate goes from 165 or whatever it is up to and then it drops to 150 bpm and then the next is at 143 bpm and so on until it gets back down to the 80bpm. So there is this slow build up and then a slow come down as opposed to a straight shot up to the 165 and then a straight shot down to 80bpm. I hope this makes sense to you.

Now my cardio thought the same thing at first, he wanted to go in and do an ablation, but before doing it he consulted Vanderbilt who told him that this would not be beneficial for me and could actually make things worse. We decided to not do it and instead we try to treat me with drugs. I know that Vanderbilt has done extensive studies on ablations and dysautonomia and with all of their studies it has shown to be a detriment and has caused more severe reactions in the dysautonomia and in many cases been shown that more than one ablation will be needed to even attempt to control the SVT, so it is highly not recommended in people with dysautonomia or POTS.

One last thing, you can have a TTT when you have both SVT and dysautnomia and they will be able to diferentiate the two. This is because as you are on the table they will see as I explained above this building adrenaline reaction which is definetely POTS or dysautonomia, but if they see a spike from 80bpm right to 160bpm or higher than they know that it is being caused by your SVT. If it builds up then it is dysautonomia or POTS.

You will eventually learn the difference between the two by the feeling in time as well. If you are totally feeling normal and then just feel your heart take off like a bat out of you know where, and you begin to feel breathless and then for no appearant reason it just stops, that is your SVT, and it can happen when you are sitting doing nothing like watching tv or talking to someone or it can even wake you out of your sleep. It can also happen while you are up doing something as well but you will know the difference because with dysautonomia or POTS it is a build up to that point of feeling. So, you are walking and begin to feel your heart getting faster and slowly you are becoming shorter of breath, but then you sit down and within seconds you begin to feel your heart slowing down and you can catch your breath again, that is dysautonomia or POTS, so you will become aware of the difference. Now just because you can catch your breath and you no longer feel your heart racing it does not mean that you will still not be left with dysautonomia symptoms like a headache or blurred vision or feeling foggy, etc... this is your dysautonomia or POTS symptoms that can be left after an event with either the SVT or the dysautonomia, and that is b/c SVT will spark off your dysautonomia symptoms, so what I am saying is that you can not just rely on your symptoms to say whether you just experienced a SVT or a dysautonomia event. You have to pay attention to the heart rate and the feeling of breathing and how fast it came on and whether you were able to head it off by stopping what you were doing or by sitting down or lying down. With SVT none of that kind of stuff will work it will end when it wants to but with dysautonomia that will work, at least for the heart rate and breathing but not for the other dysatuonomia symptoms. I hope this all makes sense if not PM me and I will try to explain it better.

Your doctor should also be able to tell the difference between the two by just asking you some simple questions, such as "did sitting down, or lying or stopping what you were doing resolve the situation within minutes?" or "asking you "what were you doing at the time when it started and was it all of a sudden or did it take a minute or two for you to get to that feeling?" These kinds of questions can indicate to your doc which one of the problems you were dealing with and whether the drugs they are using for that problem are working.

I hope this helps you to understand and you may want to ask your doc to show you the ticker tape of the monitor so that you can see the difference in the two. But I would be very careful about any types of procedures to fix the SVT.

Debra

[sj75]

hi,

I have arrhythmia (atrial tachy, a.f, ectopics atrial flutter) and pots so yes definitely possible to have the 2 but does complicate things especially as my ectopics and af can be triggered by a high heart rate (which i get with pots).

Makes treatment very challenging at times as the drugs and doses can be contradictory but i went to a great conference lately which was a real eye opener and m,ade me realise that with the right specialist (one that understands the mechanism of both conditions) treatment can be tailored to work.xx

[E246]

Hi,

Just wanted to say thank you to dizzyizzy for the clarity about SVT's etc. i have been gradually working this out and it has taken some effort to get my doctor to understand what i am experiencing. i have gradual HR build which are really fightening and often peak afew times and also have sudden jumps which bring on the pots symptoms and chest pain and lay me low for hours. They are both really different experiences. I was going to have a loop fitted so that it could be seen what i was experiencing as the sudden jumps have never been caught on a tape.

Can you tell me should you take medication for these sudden jumps. At the moment i am not on any medication as have not found anything to suit me. I tend to get very slow heart rate so bb not great.

Any advise from anyone suffering similar symptoms would be really interesting - meds etc.

Thanks

[sj75]

If it's svt bb's are the usual drug of choice as treatment is aimed at slowing the pulse. There aren't really any other options for Svt. If it was an arrhythmia ( irregular pulse) then anti arrhythmics can be used. It depends how low your pulse gets? I have a reveal ( ilr) and was told the lower limit is set to only record a drop below 40 bpm as it can be normal for a drop this low especially at night in some people, in those cases you wouldn't want bb's I guess but they are often used with people with a normal resting pulse rate in the 60's/70's. X

[E246]

Hi, this is really interesting. Have been struggling to understand this for a while.

I was told there were 2 types of ablation - one is not recommended for POTs but the other on a slightly different part of the heart is ok. I presume if it's SVT then the ablation would not be advised but if it is an arrhythmia then that is generated from a different area. However - personally i don't want anyone to mess around with my heart at the moment.

The other thing that i found useful was a cardiologist prescribed Visken or Pindolol - a beta blocker that will reduce the effect of adrenaline on the heart when there is too much but increase it when there is too little.So this could help with a slow HR. i have not tried it yet and have not found much on this site about it.

Thanks

[sj75]

the location of the ablation depends on the type of arrhythmia you have, eg if you have af, you have a lot of burning around the pulmonary vein whereas for for svt it can be on other 'hot spots' of the atrium, cryo ablation is favourable to radio frequency now but ablations can definitely affect the autonomic nervous system ( as was confirmed to me recently at a heart rhythm conference).

Its also important to understand that in order for an ablation to be successful (currently meaning 5 years arrhythmia free) it may need to be repeated multiple times. I had an ablation in 06 which was unsuccessful and triggered my pots symptoms. For that reason i have been advised that i should only consider one in the future as a very last resort.x

[peregrine]

Thanks so much, dizzyizzy - that's incredibly helpful!

Just to make sure I know what you're saying (and to try to put it into an image) - basically, SVT is like a square wave where you go up from normal to high immediately and then down back to normal from high at some point later, again immediately? And POTS/dysautonomia arrhythmia is more like a sine wave - it goes up and down with a slope rather than immediately?

If I'm understanding that right, then what I seem to have all the time is POTS-type stuff. If it weren't for the weird p-wave morphology, I wouldn't even suspect an SVT (in my case the atrial tach) at all. I don't get random jumps in heart rate - or at least, if I do, they're not symptomatic. So I could have had that my whole life and not noticed, maybe, and noticing the development of POTS is what led to the diagnosis of the atrial tachycardia as well? What you describe as sudden, unprovoked rapid heart rate is something I've never felt; I always have that slow build-up, and it's almost always after doing something like standing up or doing exercise. And yeah, afterwards I'm always wiped, but it's easy to stop it by just sitting/lying down; it never just fails to stop.

Thanks for the extra info on the ablation. Will definitely skip that. In my case (with atrial tachycardia) the doctor said that they wouldn't necessarily be able to find the extra pacemaker cells to ablate if they couldn't trigger the abnormal p-wave morphology, so it might not even work, which made me even more hesitant to consider it. I'm glad that I had read stuff on dinet before so I knew to refuse initially!

re: medication - the electrophysiologist said that we're trying calcium channel blockers because of my mood episodes - apparently beta blockers can trigger/worsen depression - but that if those don't work we can switch to an anti-arrythmia drug. But I hear those come with a very low (but it's there) risk of sudden cardiac arrythmia/death, and I'm not so keen on that. So far the calcium channel blocker doesn't seem to do anything for the dysautonomia stuff other than perhaps slowing the tachycardia a little bit. My resting heart rate is usually around 60 (although the Holter got down to the upper 40s overnight), so they weren't worried about that.

[sj75]

What is it with the p wave ? Is it absent? If so this I believe indicates AF ( irregular rhythm) rather then Svt ( regular rhythm.

Calcium channel blockers are the second line of treatment and work really well for most people.

I would be really interested to hear how things go. Let us know??xx

[peregrine]

She didn't specify exactly what was wrong (and now I regret not asking!). The p wave is definitely there in the strips, but is often jagged or square, and steeper than the t wave (rather than a smooth wave like you see on examples), and ~always smaller than the t wave. Other than that I'm not sure exactly what to look for, unfortunately. She definitely said some type of SVT, though.

Neurology next Monday (in a week); I'll report back in as to whether they're useful or not. Thanks for all the help!