Hmmmm....

[cardiactec]

So.....I started taking a med called baclofen to see if it helps my stomach problems out any......Over the past two years, VERY intermittently, I have felt what seems like flutter sensation in my neck for a good two minutes straight or so....Lately, it seems that they have been more frequent. I dont know if it is coincidence that being put on different meds (ie: florinef, now this med) is just increasing my suceptability to whatever this rhythm disturbance is or what......but last night, after brushing my teeth, I started to feel woozy, so strapped my BP cuff on while standing and it read 86/50 BP and HR 178. I put my hand over my chest to feel if it was really going that fast and it definitely was -- but it felt regular to me. I went a laid down and it immediately felt like my HR plummeted out in my chest and was beating very forcefully and slow. I put my finger on my radial to check my pulse and left it there for four minutes. during those four minutes I felt a very slow but regular pulse and then abruptly go into this 6 or 7 beat fast irregular rhythm........it then would go down to this slow regular rhythm. it did this back and forth for four minutes and then it ended..........I wished to God I had been on a monitor at that point because I KNOW this is some messed up rhythm.

I called the neuro and told him all about it - he said it didnt sound autonomic related at all, but sounded more like a cardiac problem and to call my cardio. I have done so, just wondering what the cardio will say......

I ALMOST got up to drive myself to the ER at midnight last night to see if this could be caught on a monitor, but as murphys law is, when I was about to get up to go, it stopped. EEERRRRRGGGG. I just dont want to go through the hassle of putting on an event monitor and then them not being able to catch anything! It'll frustrate me even more!

-cardiactec.

[Tammy]

I know what you mean about murphy's law. I get the same very irregular pattern and for the life of me,, each time I've done a monitor or ekg, I'm not having the problem at the time. My cardia thinks it must just be plain old sinus tachycardia, but they have never caught it on a monitor, so I don't know how he can be sure of that.

[JenniferInOhio]

I get a run of 16 SVT's in a row every once in a while. I had an event monitor and a holter and it was caught. It just feels like my heart is absolutely racing for a few seconds and then it switches back to normal as quickly as it came on.

[cardiactec]

Jeninohio, how do they or you differentiate your symptoms from your true SVT and POTS (the sinus tach)? Is it clear to you which (the sinus tachy or the runs of SVT) causes you to be symptomatic more? one over the other? So I am guessing they caught both sinus tachy from the pots AND these runs of some form of atrial tachy with you?

It would be interesting to see if your problem is more cardiac related or autonomic since you have BOTH pots and true SVT. they are both definitely highly connected to each other, as cardiac system is innervated by the autonomic nervous system - but i'm curious just how much is causing one or the other to occur....

tammy, have you ever been on an event monitor for 3-4 weeks or does this sensation you are getting happen more infrequently so that they probably would have a hard time catching it in a 3-4 week time?

[flop]

Angela,

I also have both POTS related sinus tachycardia and a completely separate atrial tachycardia. I can tell them appart quite easily from the symptoms. The atrial tach is a run of very fast regular palpitations with sudden onset and termination and it lasts for about 30 seconds, associated with chest pain. The sinus tachy I am completely unaware of unless I count my pulse. After my original tilt test I was really shocked when the told me I had run a sinus tachy of 170/min for most of the test.

I'm quite lucky that the tiny dose of bisoprolol that I take for the POTS also seems to suppress the atrial tachy. It was diagnosed on a 48 hr holter (I did have the reveal in at the time but have been told only to activate it after a syncopal episode). I had full EP studies but nothing abnormal showed up despite provocation.

Flop

[JenniferInOhio]

I have no idea if the svt and POTS are related. I'm thinking they are separate. Like Flop said, I can tell the 2 apart for sure. Like Flop said, the SVT is a run of very fast regular palpitations with sudden onset and termination and it lasts for about 10 seconds for me, but mine is not associated with chest pain. The sinus tachy I am completely unaware of unless I count my pulse or unless I'm doing something laborous it is more obvious.

[cardiactec]

both you two describe ME to a T. I cannot even tell when I'm in a sinus tachy at 190 from the POTS, I NEVER KNOW and I always think it's the weirdest thing because you'd think with you heart racing so fast, YOU'D FEEL IT .....however, I DO FEEL this other thing that is occuring, whether it happens sitting, standing, lying down -- it happens in all positions and it's very abrupt onset and offest -- I know beyond a shadow of a doubt it is not from a sino-atrial origin because of how it feels -- quick onset and offset, VERY abrupt...

my cardiologist is having me get an event monitor put on this friday, for two weeks. I hope during this two week time period that i'll be able to catch whatever this rhythm is -- i'm suspecting a non-sustained multifocal atrial tachy or intermittent rapid a-fib because the rhythm, when it does happen, usually 7 or 8 beat "Runs", feels quite irregular and fast.....dont know though until morphologically it can be evaluated on a strip........

keep your fingers crossed that I can catch this thing! it's ANNOYING me!

[Rachel]

Hey Angela,

I'm glad you're able to get an event monitor. I hope you can figure out exactly what is going on.

Rachel

[flop]

This will be one of those rare occasions where you actually want to have your symptoms. Fingers crossed that you manage to "catch" one!

Flop

[JenniferInOhio]

Hope you are able to catch it! FYI, when I was on a low dose beta blocker, the svt almost disappeared.

[cardiactec]

well that is why i am wondering if i should go off the high dose of beta i'm currently on -- so it cant be "masked" or covered up as much....maybe this is something i should ask my cardio?

you and flop said that once you went on beta for the svt and/or POTS, that the true SVT went away .....well i am on 80 mg's of beta, and though they are happening infrequently, i am still getting runs of something while i'm on the beta.....?

[JenniferInOhio]

Cardiac - I did occasionally get the SVTs with the beta blocker, but they diminished quite a bit. They definitely weren't gone completely. I was having them sometimes several times a day or maybe every few days before the beta blocker. With the beta blocker I would experience them maybe 3-4 times per month.

[flop]

My SVT has also diminished on my tiny dose of beta-blocker (Bisoprolol 1.25mg bd). Prior to the beta I would get palpitations maybe every 6-8 weeks but often several episodes on that day. Since going on the beta I tend to only get episodes every 6 months.

Flop

[cardiactec]

so I wonder what the point is to catch it if I'm already doing the things (treatments) that they'd utilize to inhibit the rhythm (beta blocker)? just for mere documentation (dont get me wrong, I DEFINITELY, want to catch whatever it is)? I have been telling the docs for years that I suspect something other than pots going on, because i present differently, i think, than general pots patients - so for this, if they WERE to catch a true SVT or heaven forbid (which i doubt it is) v-tach, than i'd want them to do an EP study..........I wonder if they would even bother to do one if they found a true SVT since i have underlying pots?

flop, why did they pursue an EP study with you after they diagnosed your atrial tach via monitor if they werent going to ablate/target the ectopic site causing the rhythm disturbance?

jeninohio, how come they didnt do an EP study on you after they confirmed you had another rhythm occuring other than sinus tachy, because you were/are symptomatic with it, right? is it just personal preference that you choose not to have an EP study?

[JenniferInOhio]

I don't know why no EP study. Before I was diagnosed with POTS, my cardio suggested an EP study...however he also MISdiagnosed me with Inappropriate sinus tachy. I knew I didn't have Inappropriate sinus tachy so I switched doctors. Once I was diagnosed with POTS, no one every mentioned the EP study again.

I don't think I would have one if it was suggested. I'm a chicken.

[flop]

Hi Angela,

I had my EP study back in Feb 2004 (no arrhythmias induced despite isoprenaline provocation). It was done because I was complaining of regular episodes of palpitations. 7 day holter had not caught any episodes, echo showed borderline thickened IV septal diameter, we have a family history of HOCM with sudden cardiac death and I have late potentials on my signal averaged ECG. Really they were looking for inducible VT.

All this lot happened before the viral infection in Nov 2004 that started off my recurrent syncope. So my tilt and POTS diagnosis was after the EP.

Flop

[mom4cem]

Just had to add that it is so frustrating to differentiate what is autonomic cause and what is cardiac cause of tachycardia, unless you are lucky enough to have it caught on a monitor. Mine are not abrupt onset/offset. Mine start slowly, and I guess I just feel something is not right and I notice then that my rate is higher and going higher and takes just as long to go back down. My readings have shown sinus tachy, so I'm told though I've not been told POTS.

I had one episode years ago where a pac threw me into a svt for about a 1/2 hr or so, and I was pregnant at the time so I just took a small dose of beta to get it back to normal, but for me even the beta takes about 45mins to kick in.

It may not sound right, but I do hope you get that run "caught" on tape so they can see what is going on and work from there.

What about a 30 loop monitor or longer?

[cardiactec]

Just got the monitor put on today -- it is a loop event -- so you hit the button when you have an event and it records 45 seconds before you actually hit the button and 15 seconds AFTER you hit it.....the nurse said that I could keep it for a full month if by two weeks I havent had an "event"....I really want to catch this thing to look at what the rhythm is myself ! lol. when the nurse grabbed a baseline today, she came back in the room after like 20 minutes of being gone and said "well, we got a baseline, your heart rate is 130, you must not want to be here or something" ...lol, if ONLY that were the case, how THAT MUCH easier life would be!! lol. I brielfy just told her i have pots and that is actually a good hr for me! lol.

[Rachel]

Hey Angela,

Good luck catching events!!

Rachel

[cardiactec]

Thanks Rachel! I'll let you know what happens!

[cardiactec]

Do you, or DID you guys notice a pattern to when the SVT would come on? I see some pattern to mine -- it seems to come on after a bad pots spell --- when I'm standing up and my rates are cranking out at 180's -- and then I go and lay down to drop out my HR and help me feel better and my rates plummit out in my chest to the 40's and then I start going into a normal slow regular rhythm and then BOOM -- instantaneously I get these 7-10 beat runs that are very fast and then it comes out of it - it's not gradual onset and offset -- it is abrupt. so it seems to be aggravated or triggered by a bad POTS day.

[flop]

Hi Angela,

I wonder whether your palpitations could be triggered by the bradycardia you describe on lying down rather than the POTS flare?

Flop

[cardiactec]

YES flop -- I thought this to be the case too -- though, it seems that the brady (high 40's) tends to be triggered when I go from extreme tachy from the pots (go from standing position with high tachy to supine position and then brady out). ....If i'm not having a bad day with the pots and dont have a very high tachy while standing and am just having a "regular" kind of day, at night I can be lying down with rates in the 50's and never tend to have this strange rhythm that comes on.

It seems to always be when there's a bad flareup of tachy from the POTS, then I go to lay down and have this immediate drop in HR to high 40's and then BOOM, from that go into this rhythm. It definitely happens when I am more brady, but the brady is precipitated by high high tachy while standing.........

LOL, this sounds bad I know, but I am trying to TRIGGER this thing to come on so I can catch it on the monitor -- I have been standing still to crank my rate up and then immediately go supine to see if the rhythm will "kick in". this is what happened a few nights ago before I had the monitor put on. I was standing, HR was 178, I immediately laid down on my bed and the HR dropped out to probably 45 or so and then it started -- very slow regular rhythm and then 7-9 beats that were very fast that would just drop off and the very slow regular rhythm followed again by 7-9 beats that were very fast........went on for three or four minutes and then stopped. I thought maybe respiratory variation but it seemed a little too "extreme" a rhythm to be that -- but just to test it out, I held my breath to see if the rhythm would continue on the way it had -- with varying slow regular rhythm to immediate fast 7-9 beat runs........and it did continue on this way when holding my breath -- slow slow and regular to fast fast and boom, slow again...

[flop]

My cardiologist has previously suggested that whenI had holters etc on that I SHOULD try to precipitate my symptoms. This is in my pre-POTS days but he used to encourage me to go to the gym and do proper cardiac workouts and stand up for as long as possible - even in those days I had a sinus tachy of 120/min when standing upright and a resting HR of 50 (probably did have POTS but with only mild symptoms then).

Hope you manage to catch something worth recording over the next few weeks.

Flop