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Forum Name: Arrhythmias

Question: Try Ablation for Poss. Arrh. That Occurs Only While Asleep?


 amyhappens - Fri Jan 09, 2009 2:38 am

Thanks very much for the chance to ask my questions.

First, the history. In February of 2008 at the ripe old of age of 37, I experienced a kind of fainting spell in which I did not faint but went to the ER with very low blood pressure, shaking, and then diarrhea began.

For three months, I had the diarrhea, but often, these episodes occurred at night, while asleep, waking me to rush to the bathroom, feeling like I was going to faint, racing heart, sometimes palpitations, followed by a BM, then some relief, slowing about an hour later.

My doc referred me to a cardiologist who specializes in the electrical aspect (sorry, don't know the technical terms), who diagnosed me with Neurocardiogenic Syncope after a tilt table test.

However, I didn't take the medicine and began to feel better over the course of the summer (I'm a teacher, so spent much of the time resting). This recent fall semester, everything started up again with a little switch. I began waking up with a racing heart, faster than before, but no fainting really, except once in awhile.

The cardio doc put me on a halter monitor for a month in November(or something akin through CardioNet) because now she suspects an arrhythmia. I have also been seeing a GI since my BMs oscillated between normal and some diarrhea now and then. He concluded, today actually, that he thinks the GI symptoms are a reaction to something else and recommended an allergist, who also will test for more in-depth hormonal issues. Anyway, my cardiologist met with me yesterday and noted that all of my racing heart episodes occur after I've fallen asleep (according to me and the monitor results). She said that arrhythmias that only happen lying down are very rare and didn't seem to be leaning towards that. However, she now wants to do an EP to determine if I have an arrhythmia and then ablation if so.

My questions are:

1. Does anyone hear have experience or knowledge of arrhythmias that happen only when you are lying down and asleep? If so, do you know why they manifest only then? Why not while I'm conscious?

2. Do arrhythmias make one feel strange in the chest? During the day, I often feel alternately a strange "weakness" or an odd pressure or something that causes me to need to stretch my arms and chest for relief. My heart is not racing when this happens.

3. I had some coffee today but not that much, though I haven't had it for a week since I cut it out while dealing with a cold. When I laid down just now to go to sleep, I began to have the strange feeling in my chest, began to feel jittery/shaky, then suddenly had to have a BM. Does an arrhythmia have such an effect on the body? And can it be brought on just by lying down?

4. Is an EP and possible ablation risky? Problematic afterward? Etc.

5. Finally, can arrhythmias simply appear this late in life? I've been fine until this last year.

I'm very frustrated because this all has been going on for nearly a year and still no real diagnosis. Could something else be happening? They did a sonogram of my heart with normal results. My thyroid is fine. All sorts of GI tests came back fine. No parasites. The one thing that seemed to make me feel a little better has been about six days of taking GSE (Grapefruit Seed Extract) at 125 mgs/day. This seems to have at least put my intestines in order and made me feel better during the day, yay!

Thank you in advance for any advice, speculative, certain or otherwise!

Best,

Amy
 John Kenyon, CNA - Fri Jan 09, 2009 9:35 pm

User avatar Hi Amy,

First, yes, arrhythmias can start at any time in life, and your age group is one of the more popular ones, statistically. You may have neurocardiogenic syncope (or plain vasovagal faint) syndrome, but I believe there is something else going on as well. I strongly suspect the GI symptoms are related also, since the vagus nerve, which controls peristatic action in the stomach and intestines, also controls the slowing of the heart. If the vagus nerve isn't behaving appropriately the sympathetic side of the control system can allow the heart to speed up. Further, there are known arrhythmic syndromes which are triggered by position. While your particular problem, if it truly is happening (and the event monitor seems to bear this out), is rather unusual, it's not unheard of at all.

There are some other distinctive things about this that you've mentioned, such as the "odd" feeling in your chest even when not having an actual arrhythmic episode. This could be due to anything from anxiety to a nerve acting improperly to a space in the septum between the atria (the upper chamers of the heart). This is usually called an atrial septal aneurysm, even though it's not an aneurysm as usually understood and is not dangerous. These often are the cause of positional arrhythmias.

As for the electrophysiology (EP) study, I think this makes by far the most sense, since the sort of problem you're having, at best, is disruptive to your life and activities. At worst it could result in you passing out and being injured. Generally that's the biggest concern with these things. Perhaps you can learn the name of the specific type of arrhythmia that was detected by the event monitor and let me know? It would be helpful in sorting this out. Even if you're unable to do that, I'd strongly recommend going through with the EP study. Now to answer your concerns about that:

1) I have both experience and knowlege of EP studies, cardioversion and radio frequency ablations. I'm a huge fan, in fact. :)

2) Arrhythmias usually do make people feel "strange" in the chest. Sometimes, if there is an anatomical anomaly associated with them, this can happen even when there's no actual arrhythmia going on, as you've described.

3) We've covered this one in the body of my response, but to save words, yes to everything you asked under this one.

4) While all invasive procedures carry some risk, the relative risk posed by EP study with or without ablation is statistically very low and the success rate very high. It would be comparable to something like having a tooth extracted, risk-wise, but a lot less uncomfortable.

5) This one got answered up top. Yes, they can.

I hope this helps ease your concerns about the procedure, which, again ,I'd strongly advise you to go through with. This may be a lot less complex than it sounds, and you may just be extremely somatically sensitive; on the other hand, the strange sensations you experience and the unusual presentation of the arrhythmias certainly make this something I personally would want corrected if at all possible. If it were to turn out to carry some additional risk discovered only during the procedure, this would either have been discussed in advance or the procedure would be stopped and you'd be informed afterward what was found and what would be needed. In some very rare instances there's some anatomical anomaly that just won't allow the thing to be corrected via ablation, and then usually it is just handled medically. In the long run, the EP study is definitely worthwhile, though, because these cases are so rare, and so often the thing can be corrected in one visit, no medication is needed afterward, and the whole thing can be forgotten. This is by far the most common outcome of these studies.

Again, I hope this is helpful. If you have any further questions please don't hesitate to bring them to us here. Best of luck to you, and keep us updated, please.
 amyhappens - Sat Jan 10, 2009 10:28 pm

Hi John,

Wow, thanks so much for your thorough and enlightening response! I’m heartened by your informative explanation and advice – and am feeling much better about the prospects of the EP study. Even if it proves no arrhythmia, at least it won’t be harmful, but rather, will provide some insight, fingers crossed.

I can’t recall what kind of arrhythmia my electrophysiologist speculated it may be; I only remember her saying something about determining if it’s a normal sinus rhythm or a __________. In fact, she seemed to question the notion that it only occurs at night as she reviewed the strips from my thirty-day monitor. She said, “An arrhythmia that occurs only after you’ve gone to sleep is rare.”

Maybe a bit more history and a few more of the persistent symptoms will enlighten? I’ll throw it out there; if it sounds like more of the same, no problem. I’m very grateful for the information you’ve already provided.

The “episodes” began last February 2008 after an especially strenuous semester of teaching, compounded by a move at the end of the year and holiday pressures to boot. By the time school began in late January, I was fairly exhausted and had undergone a lot of stress. In retrospect, it appears fitting that the first manifestation of whatever this is happened in February.

The first episode took place after I came home from teaching a long weekend class, ate lunch, and then proceeded to have diarrhea and collapse. I didn’t pass out, but I ended up shaking a lot, feeling like I would faint, and just generally, feeling terrible.

The episodes that followed were much the same, except they primarily took place at night. I would go to sleep, awaken with a weird feeling, suddenly my heart would race and I would feel like passing out. During these first few months, I ended up crawling around on the floor to fight the fainting and the low blood pressure, which would end after anywhere from fifteen minutes to an hour with a bout of diarrhea and some relief/extreme exhaustion after that. I also experienced about three months of diarrhea, which, as earlier noted, the GI has now said was a symptom of something unrelated to GI. The times I went to the ER during this period were mostly because I couldn’t get my blood pressure up. After a few bags of saline and normal CBC results, I would be sent home to recuperate for the entire day.

That period of culminated in a week-long hospital stay of many tests in April: a head and neck MRI, sonograms of assorted varieties (chest, abdomen, etc), endoscopy/colonoscopy, and general rest. I left with no diagnosis, though I had stayed in the cardiac wing, with nothing terribly noteworthy except ongoing bradycardia.

During the summer, I rested as I was off from school. I felt generally okay during the summer, with very few episodes. My cardiologist diagnosed Neurocardiogenic Syncope during this period of feeling better.

Once the fall semester began again, I lasted until the second month of school until the episodes began again. This time, they did not revolve around me shaking and nearly passing out, but rather, now I fall asleep, awaken suddenly and my heart either begins to race or I feel palpitations. Sometimes, my stomach feels like it’s pulsing.

As you noted, position actually seems to have an effect sometimes. I can feel weird pressure/muted pain on my left side now and then, just on the side and on my back behind my breast. If I lie on that side during sleep, I can feel my heart begin to speed up and am awakened. Shifting off the side alleviates. My doc said it’s just because we can feel the heart beat more on our left side, but I think there’s something to the actual positioning that brings on whatever is happening. Otherwise, the previously accompanying shaking has mostly subsided, though I did have one recent episode when I was sick with bronchitis at the end of December that involved very low blood pressure and shaking upon waking. Mostly though, I check my blood pressure when I get up to pace, and it’s fine. It is my heart that is sometimes racing, above 100 bpm, around 120 or so. Normally, I’m around 70 bpm. Everything calms after I pace and often have a b.m., which has improved, as earlier noted too.

Writing this, it seems like a lot of the earlier symptoms were related to exhaustion, though the sleep-sudden-awakening episodes continue. Stress does appear to exacerbate the episodes; I had a stressful day recently and couldn’t even lie down without starting to shake a little. When I finally did get to sleep, I awoke several times with smaller versions of a lurching/palpitating heart. While uncomfortable, I was finally able to get to sleep by 4 a.m.

I assume stress can bring the arrhythmia out, assuming that is what I have. I guess we’ll find out once the EP study is done. I’m also planning on seeing an endocrinologist shortly as the GI recommended me too. He wasn’t sure if I had a food allergy or something hormonal. My gyn also recommended an endocrinologist; he wonders if the episodes increase due to hormonal changes. I’m not sure, but I’m covering all of my bases, so will follow through that way too.

I guess I should mention, especially as I’m feeling it right now, that sometimes sitting a certain way (right now, leaning back on the sofa against some pillows in a slouch position with a computer on my lap) that I do feel some ‘fluttering’, mostly in the back behind my heart. Add this to the already-mentioned weird pressure you addressed, and I guess that just proves I’m trying to listen to my body and keep track of all of the symptoms, at risk of inundating you and my docs, with apologies!

Okay, this tome may not have illuminated what kind of arrhythmia, but maybe it will help someone with a similar array of symptoms. The good news is that while everything was scary earlier on, I realized through it all that I would ultimately be okay and that it will take endurance and patience to press on and find out what needs to be done. I feel better overall, after this many months, and am optimistic about the final determinations.

Finally, thank you once again for your response. It is one of the most thorough and professional responses I’ve received in person and online. Kudos to you for your kindness and the sharing of your expertise! Much appreciated~ I will be in touch about changes and further updates!

Warm regards,

Amy
 John Kenyon, CNA - Sun Jan 11, 2009 4:16 pm

User avatar Hi Amy, and you are very welcome.

All this is very interesting, and while I supposed we can always overthink things if we really get into them, it also doesn't hurt for the patient to be aware and paying attention and also to be as well informed as possible. Some doctors find that annoying, but it definitely is the wave of the future, and it's a good and positive thing for the most part.

Much of what you add here fits in with the earlier picture, especially the times when stress (emotional and/or physical) has been involved. Stress will definitely aggravate arrhythmias, whether they are the completely "normal" ones like an increase in premature heartbeats (PVCs, PACs, etc.) or if there is an underlying paroxysmal arrhythmia that is to some degree problematic. Stress will exacerbate just about anything.

I have a funny feeling what your doctor said (to fill in that blank) was "junctional" rhythm. I could be wrong, but because of the context and wording I kind of think that may have been the word. Junctional rhythms, while not dangerous, can be really annoying, mainly when accellerated or rapid. (You can also have junctional rhythms at a normal rate, and these we don't notice as a rule -- they just kind of fit in). When junctional rhythms perisist and are accellerated (around 100-120 BPM) or rapid (around 120-140 BPM) they are more noticeable for sure. This would fit your description as well, and these could show up on a Holter tracing during 24 hours without all of them (or any, even) having been noticed. It all depends on the rate.

Nocturnal arrhythmias are rather unusual, except -- and this is a big exception -- when they are triggered by position. Now many doctors will automatically respond to the suggestion that this is happening (especially to people who say it happens when they lay on their left side) with "You can feel your heartbeat more acutely in that position." And that's true! But -- it also puts the the apex of the heart of many a person up against the chest wall, and -- surprise -- the heart does not like to be "touched." So lots of times not only do we feel our hearts beating in this position, and not only are premature heartbeats far more common as we start to doze off or just get sleepy (or after a meal, etc.), but that position, in many people, is also enough to make the heart kick back against the "touch" of the chest wall. It's just an anatomical "thing." It happens. Not everyone recognizes this, but enough do that it's a safe statement to make. One's doctor can always say "Does not!" If that happens, well, there's no real point and going back and forth over it. It's normal for those who have it happen, but not worth arguing over.

You also have mentioned in this update that sometimes your rate gets up to 100 - 120 (and while this is a range that can be felt by many and be annoying as well, it's usually not enough to get a doctor excited), it drops back to normal after "pacing" and/or a BM takes place. This latter is important, because even when one has diarrhea and the movement seems effortless, there is some degree of straining involved, if only involuntary, and this sort of maneuver is often also called a Valsalva maneuver. Any sort of straining -- at stool, by stretching certain ways, anything that causes tensing, momentary taking in and holding of the breath, then release, is a Valsalva maneuver, meaning it stimulates the sinus of Valsalva, which is located in the aorta (there are other, related, cardiac sinuses in other places), and this causes vagal stimulation which slows the heart rate. So that fits perfectly.

The business about lying back against some pillows and feeling a fluttering in the back of your heart (a subjective analysis, as it's really difficult for us to locate these sensations, so we say what it feels like, even though it may be coming from somewhere else), fits with the earlier observation that there could be an anatomical abnormality (such as an atrial septal aneurysm) and sometimes these are also very much affected by position. Again, interesting.

While this may not have clarified what sort of arrhythmia you've been having (and it could be more than one kind, as we all have random little bursts of this or that in odd moments from time to time -- but you have something consistent going on), it also may have. I keep visualizing "junctional" in that blank space. It would certainly make a good fit. So would "accellerated idioventricular" (AIVR) except that's so long and awkward and is actually fairly unusual outside the hospital setting -- though it can happen and is bothersome to those who have it.

So we may not know more than before, but I feel as though I have a better feel for this and apparently you do as well, especially the emotional effect of it, and that's a very good thing. Your realization that this is likely very innocent-but-annoying is a big help to you in your day-to-day functioning, and the attitude that it will either be a nothing or will be fixed some way or another is very important, because it's true.

Again, you are very welcome, and I very much appreciate the kind words. I do what I can. I'll be looking forward to interesting updates. :)

My best to you.
 Sherie - Mon Mar 02, 2009 2:31 am

Amy, yes I have only nocturnal AFib. I have had this since 2004. I can tell you a great deal about it when I come back on the site. It is late and I have to be up early for a test. It can be very frightening and it disturbs the sleep pattern. I am on an event monitor now for a month. I have been on it 3 times and I have some A Fib, Atrial runs, and sincus tach. However, it is only while I am asleep. Nothing happens during the day. I have been to three electophysiologist who say I am not ready for ablation at the moment.

The reason I am responding to this at the moment, it your frequent BM...they got along with the rapid pulse I have found. It was worse in the begining than now. MAY I ASK IF YOU HAVE HAD A THYROID PANEL DONE???

Warmest Regards
Sherie
 amyhappens - Wed Mar 04, 2009 4:39 pm

Thank you for your note, Sheri! I had postponed the EP study because I thought all might be due to a recently diagnosed, though longterm, case of H Pylori infection. Though I'm still experiencing some palpitations, the episodes have abated. Of course, it's only been two weeks since I began my alternative treatments (details on my blog noted below), and I fully expected, until yesterday, that everything would return to normal.

Anyway, here's a synopsis & update since my last post, with apologies, because I'm addressing a doctor here, and John Kenyon!, and would love to send the ECG to someone via email to take a look:

I have been experiencing strange episodes for nearly a year now that have had all sorts of accompanying symptoms (described in detail below); the end result recently was that I had gone undiagnosed with H Pylori for the year. Since that diagnosis, I have been addressing the bacterial infection with a number of "alternative" medicines (under my primary physician's supervision - such things as Manuka Honey, Monolaurin, etc) and have become increasingly better by the day. I no longer awaken in the middle of the night with the "episodes", though I still have some palpitations now and then. At worst, I get up in the middle of the night feeling a bit uncomfortable, but then after a bowel movement five minutes later, am able to return to bed. Overall, I'm feeling much like my former, "normal" self.

Which brings me to you. As a precaution, I saw a new GI, who wanted to do an endoscopy (finished today -- result: mild gastritis & reflux). She did a standard ECG beforehand the other day, which registered as "abnormal." I sent this to my cardiologist, who is also an electrophysiologist, who had me come in for another ECG, which turned out to be normal. In fact, all of my ECGs with her (Dr. Ibrahim) have been normal. During the worst of my symptoms early last summer, she had diagnosed me with Neurocardiogenic Syncope, though I stopped the medicine for that after a week, and then a few months later the episodes changed to racing heart. Anyway, Dr. Ibrahim still determined that I may have Brugada Syndrome based on the ECG (attached) that came from my GI's office. I asked her if she felt strongly about it; she faxed it to another colleague, who replied immediately that he was "underwhelmed" and didn't think it necessarily indicated Brugada syndrome.

So my question to is, Does my one ECG, out of many over the last year, indicative or classic Brugada (I'm happy to send it along via email to anyone with some knowledge about ECG readings)? I'm concerned because while I don't mind having the ECHO and the stress test, I am also scheduled for an EP study, which seems invasive and unnecessary if a) I'm getting better and b) my symptoms were caused by H Pylori, which is currently being eradicated. Are there any other methods for discovering if I have this syndrome?

HISTORY (written on my blog, February 20th) --

* I originally had a racing heart, three months of diarrhea, and would nearly pass out, especially in the middle of the night. I also could not lie down for hours after each episode. Yes, I would leap up from sleep in the middle of the night to crawl around, trying not to faint, and then have many nasty visits to the toilet. Follow that with the topper of being utterly spent and not being able to lie down due to weird chest/stomach pressure, and you’ve got a nice recipe for exhaustion, missed work, and a social life put on major hold.

* Next, I moved on to leaping up from sleep to pace for hours while my heart raced and I shook. A few times, my heart raced to the point I thought I was having a heart attack (I once wished I could just go unconscious to avoid the experience,which was painful and frightening), and then I would projectile vomit. Yum. I ended up in many ERs, to no avail.

* I have since graduated to heart palpitations and many bouts of bowel movements that are solid but frequent. And am gaining weight back.

Okay, so day and night symptoms have included: weight loss, shaking, vomiting, nausea, diarrhea alternating with constipation, loss of appetite, racing heart, syncope, shortness of breath, palpitations, weakness/fatigue, night sweats/hot flashes, and anxiety.

http://amyking.wordpress.com/2009/02/20 ... -h-pylori/

Any advice on this scary possibility (Brugada) is most warmly welcome.

Thanks,

Amy
 Sherie - Wed Mar 04, 2009 7:10 pm

John, This is to ask you about the EP study or ablation for someone that has a platelet disorder. I have VonWillobrand and I was told by an EP I would need to be on a blood thinner 6 weeks before and 6 weeks after. Being that I have this bleeding disorder I am quite concerned about it. I like Amy have nocturnal A Fib, A Runs, A couplets. I have lived with this since 2004 and to add, yes, stress, caffeine, chocolate, alcohol, bring it on. Also, an important thing to suggest to AMY is "has she had a thyroid panel done for hyper thyroidism and or Graves disease? I was misdiagnosed for 3 years and almost went into thyroid storm. I believe this is what started my heart arrhythmia's. The EP doctors I went to said that it was to early to think of ablation. They are all reputable EP doctors. I do not take meds as I am very sensitive. There are many opinions about Lone Paroxysmal A Fib and chronic needing to be on blood thinners due to stroke risk. I have been told repeatedly by Cardios that one is in danger if they are in A Fib 24 hours straight, and then they are put on blood thinners. There is controversy about that at the moment. I am on an event monitor at the moment and that is quite enlightening as it picks up exactly what arrhythmia's one has. Anyway, thank you for your kindness in ready this...

Sherie


John Kenyon, CNA wrote:Hi Amy,

First, yes, arrhythmias can start at any time in life, and your age group is one of the more popular ones, statistically. You may have neurocardiogenic syncope (or plain vasovagal faint) syndrome, but I believe there is something else going on as well. I strongly suspect the GI symptoms are related also, since the vagus nerve, which controls peristatic action in the stomach and intestines, also controls the slowing of the heart. If the vagus nerve isn't behaving appropriately the sympathetic side of the control system can allow the heart to speed up. Further, there are known arrhythmic syndromes which are triggered by position. While your particular problem, if it truly is happening (and the event monitor seems to bear this out), is rather unusual, it's not unheard of at all.

There are some other distinctive things about this that you've mentioned, such as the "odd" feeling in your chest even when not having an actual arrhythmic episode. This could be due to anything from anxiety to a nerve acting improperly to a space in the septum between the atria (the upper chamers of the heart). This is usually called an atrial septal aneurysm, even though it's not an aneurysm as usually understood and is not dangerous. These often are the cause of positional arrhythmias.

As for the electrophysiology (EP) study, I think this makes by far the most sense, since the sort of problem you're having, at best, is disruptive to your life and activities. At worst it could result in you passing out and being injured. Generally that's the biggest concern with these things. Perhaps you can learn the name of the specific type of arrhythmia that was detected by the event monitor and let me know? It would be helpful in sorting this out. Even if you're unable to do that, I'd strongly recommend going through with the EP study. Now to answer your concerns about that:

1) I have both experience and knowlege of EP studies, cardioversion and radio frequency ablations. I'm a huge fan, in fact. :)

2) Arrhythmias usually do make people feel "strange" in the chest. Sometimes, if there is an anatomical anomaly associated with them, this can happen even when there's no actual arrhythmia going on, as you've described.

3) We've covered this one in the body of my response, but to save words, yes to everything you asked under this one.

4) While all invasive procedures carry some risk, the relative risk posed by EP study with or without ablation is statistically very low and the success rate very high. It would be comparable to something like having a tooth extracted, risk-wise, but a lot less uncomfortable.

5) This one got answered up top. Yes, they can.

I hope this helps ease your concerns about the procedure, which, again ,I'd strongly advise you to go through with. This may be a lot less complex than it sounds, and you may just be extremely somatically sensitive; on the other hand, the strange sensations you experience and the unusual presentation of the arrhythmias certainly make this something I personally would want corrected if at all possible. If it were to turn out to carry some additional risk discovered only during the procedure, this would either have been discussed in advance or the procedure would be stopped and you'd be informed afterward what was found and what would be needed. In some very rare instances there's some anatomical anomaly that just won't allow the thing to be corrected via ablation, and then usually it is just handled medically. In the long run, the EP study is definitely worthwhile, though, because these cases are so rare, and so often the thing can be corrected in one visit, no medication is needed afterward, and the whole thing can be forgotten. This is by far the most common outcome of these studies.

Again, I hope this is helpful. If you have any further questions please don't hesitate to bring them to us here. Best of luck to you, and keep us updated, please.

 Sherie - Thu Mar 05, 2009 2:42 pm

Amy, has anyone suggested a 30 day event monitor? I am wearing one now, and it registers Atrial runs, Atrial fib, that was never picked up on a 24 hour halter. My heart is sound, clear arteries, (had a CT angio) no valve problems, and I had the same (more or less) symptoms you did with the diarrhea as well. It is no problem to wear, does not show, and has really enlightened my current Cardio and I know what my options are more or less at this time. It would settle your heart rhythm problem if you wore one for even a few weeks. If you have any heart arrhythmia's it would show, and then you would settle that issue. Everything I had done with the heart was normal, until I insisted on an event monitor. I was suffering terribly, with frequent nocturnal awakening, running to the bathroom as well, and knew there was something more going on. I changed cardios and the new one was quite amenable to my wearing the event monitor. I thought I was going crazy with the symptoms and being told there was nothing wrong. The event monitor showed the arrhythmia's and identified what they were. I almost have them just at rest while asleep, but now I know what I am dealing with. I have been to two EPs and am quite shy of an EP study right now, as I would have to go on anticoagulants for 6 weeks before and six weeks after the procedure. I have a platelet disorder so it is even more of a decision to make. Again, just a reminder "have you had a simple thyroid panel?" That would be to see if it equates to some of the problems you are having. It could cause many of them. Many times we have multiple symptoms and we neglect to check out the simple things. Anyway, keep me informed.

Warmest regards
Sherie
 John Kenyon, CNA - Fri Mar 06, 2009 11:50 am

User avatar For Amy:

I'd be happy to look at your EKG if you can send it via email. We can arrange this via a very slightly convoluted process. Check your Private Messages for more details. Hopefully we can make some sense out of this.
 John Kenyon, CNA - Fri Mar 06, 2009 12:18 pm

User avatar For Sherie --

FIrst, I'm puzzled as to the reasoning of the EP specialist who a) feels (along with others you've seen) it's too soon to consider ablation; and b) feels prior and post EP study you'd need to be on a blood thinner (or more likely an anticoagulant). While sustained, intractable A-fib can certainly justify treatment with warfarin to prevent clots from forming, there are some considerations here that just don't seem to add up, at least in my experience. First, most EP studies are done with an eye always toward possible ablation, and are carried out with this possibility (and even hope) in mind. Second, if you're not experiencing sustained or frequent episodes of A-fib of 72 hours or more, most doctors I know would not ordinarily prescribe an anticoagulant therapy, although you might be placed on aspirin therapy. However, all this is made somewhat moot because of Von Willobrand's, which makes unwanted clotting rather unlikely. We don't generally look forward to doing any sort of cath on someone on anticoagulants anyway, and certainly don't try and get people on them prior and post cath unless they've already been diagnosed as being in chronic A-fib. Since your experience with this problem seems to be in intermittent and often triggered one, it hardly seems appropriate to have you on anticoagulants pre-and-post procedure unless the doctor is fairly certain A-fib will be triggered in the course of the procedure, and if this is so (and VWD already duly noted), anyone I know would want to ablate an induceable A-fib site.

So I'm perplexed by this.

Since you've been diagnosed with Graves' disease, magagement of this should keep your A-fib interludes at the intermittent to only occasional level anyway, and while it may account for the arrhythmia (and often does, in fact), if this is the case, why even consider an EP study? Is it because the A-fib continues despite management of hyperthyroidism? If so, why do the study, again, without the contingency of an ablation? And all through this, with VWD, why the fairly long-term anticoagulant therapy? Am I missing something?

Since more than one EP doctor has told you the same thing, I'm not so much arguing the issue as looking to learn what on earth could be the reasoning behind all this. I'm sure they have their reasons, but I just don't see it. If any or all of them believe there may be a residual irritable site causing the episodes of A-fib (and other, random, less noxious atrial blips), then why do an EP study without hoping to ablate the spot? And the anticoagulant business just stumps me completely.

Sorry to go in circles like that, but it seems a fairly straightforward situation, yet for some reason you've been told a lot of things that just don't seem logical to me. Then again, I am no doctor. I've just been party to so many of these procedures I feel fairly comfortable predicting how they'd be handled.

I'd like to say I hope this is helpful, but it probably hasn't been. If it at least raises some useful questions that might be some small value to you.

Best of luck to you. Please keep in touch with us here.
 amyhappens - Fri Mar 06, 2009 1:28 pm

First, let me just say how kind and enouraging it is to be in touch with John Kenyon. His generosity is consistent on this site -- he deserves some flowers and applause, if I may be sentimental. Not too many sites on heart issues where someone with experience, real experience, shares fully his speculations and questions regarding a situation. Kudos to John Kenyon.

Next, Sherri, thanks very much for your advice. My doc checked for Graves last year, so I'm good on that end.

Oddly, it really does seem as though much of the heart issues was a response to the H Pylori infection. This kind of heart response is not typical of an infection, but I guess when you're dealing with an ongoing infection in the central nervous system and, more than likely, nutritional deficiencies, all sorts of things can go awry. I mean, I've been having palpitations beyond the episodes (which don't happen anymore), and the solution to stop the palpitations has been to take a good calcium/magnesium supplement and to alternate that with a good magnesium/potassium supplement. It's working. I do eat lots of veggies, chicken, fish, etc., but these still don't seem to supply enough of those ingredients, though my blood work has been sufficient in those areas. Anyway, that's where we're at.

And as I noted to John Kenyon via email, I contacted Dr. Brugada through the Brugada syndrome website. He read my ECG and replied that he saw no evidence of Brugada syndrome. So I'm relieved. I am still going for a second opinion to be sure, but overall, I'm less anxious and more relaxed, which certainly does have a considerable effect on the body and one's health. Throughout all of this, I've had to learn to address anxiety in a way I never considered before because I was not an anxious person in the past. Fine. But now that medical issues have been raised, voila! Yoga, a cognitive behavioral specialist, and lots of other magic later, I'm much more equipped for coping with bad news, though I prefer not to get any for awhile!

Anyway, good luck Sherri. I hope John's advice will give you some better ground to proceed on.

Best,
Amy

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