I get to see the cardiologist next week. But in the meantime, I managed to get a hold of the tracings for the tilt-table-test. The results don't look very nice!
http://img.photobucket.com/albums/v600/bluewind95/TTT6-SMALL1.png <--- I believe that's when I fainted.
I'd never seen an ekg like that. Does it look worrying? Other than "WTH is this!?" what should I ask my doctor? Do you guys think that this is indeed the mildest type of NCS available? Should I freak out? Could this be what's causing the problems (crazy-bad fatigue, palpitations, tachycardia, pre-syncope, you know... all the stuff that comes with NCS) I feel?
I'm scared. I've been looking desperately for answers and can't find any really concrete ones. I knew one thing, then the doctor took it back when he saw the (wrong) test results and didn't believe me. Now I see the tracings and... I may just be alarmed, but that doesn't look like "the mildest case of NCS possible". Help? Please?
Thanks for the repyl. All I know of that EKG is that it's from when my heart stopped for juuust over 4 seconds (less than 5), and that all those lines represent what my heart was doing at that time.
I tried emailing my cardiologist, but he didn't reply, I dunno if he never got the email.
And yeah... I am rather upset. This illness, whatever it is, has affected me since I was a child. But its effects were always attributed to me being "lazy" or "apathetic" or "not putting in enough effort". Until I came to believe that must be it. Everyone was going through the same stuff, only I was unable to get over it. Then they said it was anxiety, and I came to believe I must be a bundle of nerves, for no treatment ever helped the "anxiety". I was pretty sure it was cardiac, but no one believed me.
Then a doctor said it was cardiac but treatable/controllable/curable/maybe/progressive/stable. (Yes, all those adjectives were uttered, and I'm not entirely usre what he meant now. All I recall clearly is "rarest type of NCS")
The current doctor said cardiac too. Then he looked at the tilt-table-test results* and said "nope, not cardiac. I dunno what's wrong with you. This is the mildest version of NCS ever. Probably fibromyalgia." But I believe fibro can't be there if you don't have constant pain all over? I have all sorts of tender spots (my entire body is one big tender spot), but I have no persistent pain ther than a back pain that's been there for years and years.
And I look at that EKG and that doesn't look like it's "the mildest version of NCS ever". And I can't grab a hold of the doctor and....
.... Yes. I'm very upset...
*= They wrote down in the test results that they had given me some vasodilator medicine and immediately after, they had lied me down and I didn't faint for 30 minutes. They did NOT. They gave me it in a pill, and I fainted within a minute of it dissolving. But the doctor doesn't want to believe that... cos the table says they laid me down. THey didn't. Those measurements are probably from *after* I fainted. They did lie me down then! And still took measurements! But since the table is printed *before* the table with the measuremetns of when I fainted, the doctor won't believe me...
It's difficult for me to comment on all of this. First, as for the asystole (your heart stopping for several seconds when you fainted), at the very least I can hopefully offer at least a little reassurance. It is not at all unheard of for a person to experience asystole during syncope. In fact, there are several other members here on our forum who experience this same thing. Patients who have this will have their heart briefly stop beating and restart again spontaneously on its own when they faint. Some patients with this type of syncope are fitted with pacemakers, but others live their entire lives without a pacemaker; that's something you may wish to discuss with an EP-cardiologist (electrophysiologist-cardiologist) if you have any interest in it.
As for the misinterpretation of your tilt table test, your options seem to be looking for a second opinion from a doctor who will believe your version of the events or having the test repeated entirely by a more reliable physician and making sure you discuss and agree upon the protocol for the test beforehand. I would certainly be upset as well if I were under the impression that my test were being misinterpreted but it seems as though at this point you're beating your head against a wall.
Have you ever done a "poor man's tilt?" What results do you get from that? Could you ask your doctor to do that to verify your diagnosis? (The instructions for that are linked from the article on this health page which we've labeled as such:)
Because you have asystole, you really should only do the "poor man's tilt" in your doctor's office, under your doctor's supervision. Please note that it is vital to the procedure that you do not fidget or shift your weight around on your legs as this will skew the results. Some people also find that talking during the test messes up their results, so remain as still and as silent as possible throughout. Your doctor should have an extra person (like a nurse) in the room to help "spot" you in case you do start to faint so they can catch you, and measurements should continue being taken until the symptoms become overwhelming or the diagnosis is so obvious that the test need no longer persist. (Or 30-40 minutes have passed and no change whatsoever is occurring.)
I'm sorry you're in this frustrating situation. I hope you can get this resolved soon.
I know one thing, I will never take nitro again after them giving it to me for my TTT in 2009. I was one of the ones who fainted and had no palpable pulse - and was also told it was rare (<1%) but also was told mine was due to my heart/ans connection.
If I were you, I would ask for it to be repeated, because if you do have the "rare" form of NCS you definitely want to know and ask for a 2nd person to be there by your side and tell them why.
I still question WHY this happens - my bp stayed normal during the 20 min test, but my HR went up 32 pts, then they gave me the nitro spray and bam I was gone and the explanation was cardiac/ans combo - I just don't get it? I've fainted since I was 9 and had pvc's/cp/sob off & on since then - I was told it was probably my heart stopping briefly like what you would have in sustained vt's and then the heart starts again.
If you do have a rare form and they tell you you need an ICD, please look into that option - I had a pm/icd implanted when my Vt was sustained and didn't correct itself.
I'm still trying to find my answers and figure out what's going on; so I'll be interested to see if you get any new answers from your cardiologist or follow up testing
I'm not allowed to interpret EKG's here (I'm not a MD) but no, this EKG is not showing cardiac arrest.
Hard to say what this is, because the prints are poor and there are lots of disturbance on the readings (no baseline), but from what I can see, you have a heart rhythm, but the QRS complexes are really wide. It's possibly some P waves there, and the reasons MAY be some bundle branch block or hyperkalemia. If the P waves aren't there, you may have gone into some kind of AV block with ventricular escape rhythm. This is possibly the most likely explaination, but the EKG is kind of useless.
Had you ever fainted prior to the vaso-dilator induced faint on the tilt table test, or just felt close to fainting? Have you fainted since? You talked of pre-syncope, fatigue, palpitations and tachycardia.
I fainted after they gave me nitro-glycerine on the tilt table test, but had never fainted before or since, though my vision has greyed a number of times and I also have had my vision practically whited out. I was diagnosed with POTS. They said the syncope was induced on my report but my problem was POTS. I think people are typically diagnosed with NCS (neurocardiogenic syncope) when they faint apart from the tilt table in addition to the tilt table test... syncope being the medical term for fainting.
Thank you guys for the replies. I've read them, but fatigue, chores and work have been preventing a proper answering them...
I see! It is a relief to know it's not completely unheard of. I wonder what's the main difference between those who are fitted with pacemakers and those who aren't. I think my main question in that department now is whether or not fainting almost immediately after being given the vasodilator changes the diagnosis much. As for a pacemaker, if it would stop me feeling so unwell, I'd take it in a heartbeat. If it's only going to make sure I don't completely faint... I dunno. It's not even the fainting that's so debilitating, so much as the fatigue.
It is extremely annoying to see such a thing on an official test result, definitely. The test was not cheap! I know that the doctor was pretty sure it was NCS before the test (said that the irregularities found on my Holter test were indicative of that), so maybe that's why he wasn't very rigurous on the protocol. But it still angers me SO much that the results would be rendered useless to another doctor this way. I'm not looking forward to a second tilt-table test for a few reasons. One is that since I'm on beta-blockers (long-release metoprolol) I don't know how long I'd have to go off the meds for an unskewed result. And I do know from experience that a single day of going off my meds won't have my heart go as fast as it does on its own *but* it *will* cause me to feel way, way worse than normal (I forgot the meds the other day. Ow.). The second reason is... it's uncomfortable. Even knowing what I'm expecting, the whole fainting issue is... horirble. And the third reason is financial. It's not a cheap test, and I'd rather not pay for it again. So I'd really, really like to exhaust all options before going back to that option. I sought out chat archives from when I told a few people about the test result. You can blame faulty memory after 2 years, but not on the very same day! In all cases, I mention that I fainted right after the vasodilator pill was given. So that means my memory is correct. It should be... I have good memory and that test was very, very important to me, so I made sure to remember every detail as well as possible.
I've done tests relating to how my pulse and BP are affected by sitting/standing, but I don't think I ever have done a proper poor man's tilt. Sadly, the link on the health page does not open for me, neither at work nor at home. What I did was lie down 10 minutes and take my blood pressure and pulse. Then I stood up for 10 minutes and took the blood pressure and pulse again (on the day I forgot my meds). I didn't faint. My blood pressure was pretty constant (actually raised a bit), and my pulse went up by about 25. However, I felt absolutely awful. I didn't even manage to stand the 10 minutes standing (only barely made it to like 8). I felt a lot of pressure on my chest, had at least one PVC (I THINK that's when you feel your heart pause and then a very strong and painful beat?) and my heart just felt odd, like it was shaky or something. I had issues breathing and I decided that siting down was a much better idea. I'm not sure what happened there, as my pulse was not *that* high (From the tilt-table-test and experience, I know that I seem to only go into full-blown presyncope (as in... I'm about to drop unconscious if I don't lie down within 5-10 seconds or so) when my pulse goes above 130).
... Yes, I think that it wasn't a great idea to do that alone at home, lol. I didn't fidget this time, and definitely as soon as my muscles were completely still, the symptoms would worsen quite a bit. I wonder if the doctor would charge extra for a test like that to be performed... I'd need to ask. Unless the faint tracings (I wish that they'd actually taken copies, they're SO degraded you can barely see anything anymore...) are enough, as my home version of the test was already unpleasant enough...
Thanks. I hope that it all gets resolved soon. I see the cardiologist next Monday, in just 6 days. I can't wait. In the meantime, he's also asked me to see a rheumatologist, to rule out chronic fatigue syndrome and fibromyalgia.
I don't blame you! Fainting is horrid. It's one of those things that lasts so little and you're like "It wasn't THAT bad, in retrospect... but I don't EVER want to feel that again!". I was also told that having no pulse is very rare (I wasn't given percentages, though, just told it was the rarest occurrence) but in my case I was told I had no cardiac problems (aside from NCS), as my heart is structurally sound and about as efficient as it can be, physically (70%).
I may very well have to get the test again... but I hope not, and I think I really should be exhausting all possibilities first.
Yeah, same here... I only had a minor drop in blood pressure (I thought it'd been a bit more than that? But numbers I'm not good at recalling, so that I don't really know). They gave me a little pill. And it took a bit to dissolve under my tongue, but as soon as it did... a minute later, I was out. They didn't even have time to lie me down again, I was gone at the start of the table moving back to lying-down position, and only woke up when it was nearly fully back to that position. I've had PVCs (at least I THINK that's what they are!) for a long time, and several times some kind of arrythmia that felt like my heart was shaking (like when someone's electrocuted in a cartoon!) and if I didn't gasp/cough/doSOMETHING, I'd immediately start to get very very lightheaded. I've also had all these since before I was 9, but it was much much more mild back then. What you were told is probably right... your heart was probably stopping for a little bit and then starting back up.
I shall keep you updated, then, and will update with whatever the cardiologist tells me when I see him. I hope you find your answers soon!
I didn't even know that I'd had an asystole until the first doctor said so. He's the one that said I'd had a cardiac arrest, and from the prints, this is the only one that seems like it could be the point where that happened. The others are... well the first is normal-ish looking. The later ones are a bit more irregular-looking. Then the ones after this are veritable roller-coasters. I don't really know how the asystole happened, though. I can see it lasted about 4 seconds... and that's all I know. I'm hoping the cardiologist will answer that question when I see him next.
Yes. Once, when I was little, after seeing a drop of blood. I've always been an information nut and a reading nut, and when I finished all my school books, my aunt lent me "older people school books" to read. One of them was a health book, which I devoured. In this book, I read about fainting and what to do when someone fainted (the person should be laid down and feet should be raised). I don't recall *why* that was interesting for me, maybe because I felt it could be useful and practical. That first time that I fainted was all it took for me to apply that knowledge to myself and, whenever I got the warning signs of imminent syncope, I'd lie down and manage to avoid full syncope. There were times when this wasn't possible, but I had already been diagnosed as having chronic low blood pressure, so I always carried the medicine (a vasoconstrictor) with me. And once I took off running when I was about to faint (I was in a stairway. BAD idea to faint there!) and only managed to keep myself up for a few seconds longer before I got to where the medicine was and just *barely* managed to keep from fainting (that trick never worked again, I simply wouldn't be able to take off running). So most of the time, I have fatigue, pre-syncope and tachycardia. And if I didn't throw myself to the ground or something, I'm sure my syncope count would be much, much higher!
I had a pacemaker/icd implanted due to my bradycardia and polymorphic vt episodes.
It took almost a year for them to get settings right for me not to faint frequently...I fainted 3 times in the dr's office one day and they were doing that "hummm" thing they all do and said you shouldn't be fainting [really?]...lol
I have my lower HR set to 57 now I think; maybe 60 from the last visit since I was fainting in the 50's HR. I've only fainted once in the past few months thankfully and that wasn't a full faint; I saw black went out but felt the tugging in my chest from the device (some feel it others don't) I can always tell though.
I've fainted since I was 9...so about 35 years; I just got used to it and it really hasn't bothered me unless it's been when I fell into something and hurt myself - like moving boxes into our new house - I fell into the wall and onto tile banging my leg up pretty bad. It still scares me to think all these years my heart may have been stopping and all i got from doctors was a 'don't worry about it" or fainting is fine! ugh
I'm still trying to figure the whole ANS/NCS thing out myself...I thought it had to be a certain point drop in bp/hr also. If you have pvc's that could explain some of the problems and could contribute to the ANS/NCS issue.
Are you saying then that aside from the tilt table faint, there was only one other time you fainted (at the sight of blood), but you feel that is due to lying down and putting your feet up or taking vasoconstrictor medication before it could happen again?
Considering that if I do that I can retain consciousness (though not by much), yes. I failed to get down that one time. But after that, I've always managed to. That's resulted in being up to an hour unable to get up with a very, very low blood pressure and a fairly irregular heartbeat. Last time I was knocked to the floor like that, it was about an hour where I could barely breathe, could not even scream (and I was trying to scream for help) and just had to stay on the floor with my feet on the bed. It is true that I manage to not faint if I do that, but I do not really recover fast.
Sorry I haven't been on in such a long while. November was... a hellish month. And that's an understatement. Last weekend, I was forced into a TWENTY hour workday on Saturday, followed by a 17-hour Monday, a 13-hour Friday(not even a food break in that one. My stomach is still killing me) and a 7-hour Saturday (same. No food break) today.
Plus several other long days and weekends. Plus stress of being blamed and told off for many of the project problems, some of which aren't even my fault to begin with. And to try to lessen the stress, I participated in NaNoWriMo (they sometimes did have me at work for hours without realling giving me anything to do) and yeah... my schedule has been hellish.
Anyways, I promised an update and thus here it is before I go and collapse in bed after feeding the fishes...
He says that it's, for syncope, not as bad as others he's seen. That my heart stays in sinus rythm despite the tachycardia, then gets the asystole, and then goes back directly to sinus rythm. He also says that NCS is suppsoed to be episodic and that he can't really explain why I am so horrifically exhausted all the time.
He's asked me to see a rheumatologist (which I will see next weekend) and asked me to get some blood tests done (of course, I got pre-syncope and was saved from syncope by complaining about the symptoms with enough anticipation to get taken to a bed to recover for the next almost two hours :P). I got more done than he asked for because I read they might e useful. And called the rheumatologist so she'd tell me what others she needs. I have 3 more or so blood tests to do, then. And then... well, we're going to see if, apart from the NCS (because there's no denying I have it, and have it significantly enoguh to cause me trouble), I could have either chronic faigue syndrome or fibromyalgia or some other auto-immune disease. We don't really know more than that yet. I shall update more when information becomes available to me.
Research the Vagus nerve which is directly responsible for Vasovagal Syncope (VVS) or NCS... The malfunction of this nerve causes all of these symptoms, I have them also. I have presyncope and have only passed out once (thankfully). It can happen at any age but typically women approaching middle age... In my case, I had symptoms off and on for many years (written off as hypoglycemia) but not severe until my 40's and then it was unbearable and completely debilitating. In my case, Celexa has helped immensely but I understand that some people have issues with the drug - I did for the first couple of weeks but then adjusted and my VVS symptoms are almost completely gone. I know how frustrating it is to try to find answers when your body is in distress. I don['t kinow if any of this will help you but I hope you will be ok soon...
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