Back to Square One... (update, I guess)

[bluewind95]

Well, yesterday, I went to the cardiologist. He's... stumped. He says he can't explain how it is that I can feel so ill given how relatively mild my NCS is. He says it HAS to be something else in addition making me so ill. So he's suggested fibromyalgia or chronic fatigue syndrome. But I dunno. I mean, I'm tired all the time, yeah. But I'm not in pain all the time. Sure, my skin is very tender (I have at least 8 tender spots, he says), but isn't that kind of normal? And at the same time, my pulse IS high enough to bug me. Not enough to be bad and dangerous, perhaps, but then why is it that I feel so unwell? Is it that it's varying too much, or...? The medicines also don't seem to have the effect they should be having. I dunno... And if it's neither of those... then what is it?

Sorry I didn't reply to more of you on my last topic. I've had a seriously hectic past two weeks or so. I'll try to get to it as soon as I can.

[bluewind95]

I'd like to see if I can keep this cardiologist. Aside from his disbelief in the whole thing with protocols not being observed properly in the test, he has been amazing. He isn't the one who performed the tilt-table-test. I will be scanning these and sending them to him and we'll see what he says...

Anyways... the results are thus:
First page says it's at rest. And it shows a kind of fast, but steady pulse from what I see. Next page doesn't look so stable. Then a few pages later, there's beats that look like it's hardly beating at all, then it flatlines for like half a page (how long is that...?) then a really irregular-looking trace and it restarts and simply isn't as nice and regular as the first page from then on, the trace looking more like a rollercoaster than it did before. I don't really know what this means, save for flatlining meaning cardioinhibitory.

And yeah... it IS like a bad dream where you scream and no one hears you. My mom thinks I'm being obsessed, but I really just want to know what's wrong once and for all... I've dealt with this for FAR too long.

[LaLa4]

Yeah please go see another doctor. This one clearly isn't going to treat you properly and it's just going to waste your time and time that you could be making actual progress in testing, diagnosis, treatment, etc.  In my experience, I come from a family where we all love each other and care about each other a ton, but it's been a constant struggle (major stress) to get them to really understand what I go through.  And as much as they would try they didn't really even start to grasp it until they saw some results and numbers and figures from "experts". It stinks that that's what it takes, and they still don't totally get it and probably never will, but some validation is unbelievable theraputic and I think helps put your mind in the right place to get better.  
Go somewhere else, and keep trying until you find someone to take you seriously.
I hear you and I'm so sorry you are dealing with this, it's like a bad dream where you are screaming but no one hears you.

[vbc2000]

It really sounds like you might need to start looking for another doctor if this one isn't taking you seriously or helping.  Again, exhausting, but we deserve good docs.
Stephanie

[bluewind95]

It was about 90. Maybe a few beats less when I relaxed(which is odd as my resting heart rate had been much higher than that, including the time I couldn't breathe after it stayed close to 120 all day long without a single break, I know it was about 90 because I distinctly remembered being disappointed that it wasn't as high as it had been). It went to 110-120 when they tilted the table. BP just fell 10 or so points. I'm not sure how long I was tilted, but I was feeling short of breath long efore I fainted. THey wrote "none" on the symptoms column, but I was "same", that is, short of breath. I fainted only a few minutes (the pre-syncope started in like 3 minutes) after being given the little pill. And my pulse jumped to 136 and flatlined in about a minute. Then it re-started with some pauses that had me kind of worried until I noticed they were at the same time as I got an odd palpitation. It's been almost two years since then, as the test was done on February 2009.

[Heiferly]

What was your starting HR before they put the table upright for the tilt?  What was your max HR during the tilt, before they gave you the medication?  How long did they wait after putting you upright before giving you the medication?  How long ago was your tilt table test (i.e. has it been under a year or over since then)?

Do you have a cuff at home now?  Have you done a "poor man's tilt" at home?  (Please, if you're going to do a "poor man's tilt," be safe and have someone "spot" you in case you faint so you don't fall and hurt yourself!)  You can find the article with the description of the poor man's tilt on one of our health pages—it's like the 8th article down:

http://www.medhelp.org/health_pages/Neurological-Disorders/Further-Reading-on-Dysautonomia/show/696?cid=196

[bluewind95]

ParrotPal:

I think what frustrates me the most is my doctor's disbelief and now I'm back to square 1 on both, a diagnosis AND the acceptance of my family. I do not know how useful/useless the test results are NOW that I realize they didn't follow protocol and still managed to write the results as though they had. The doctor won't believe my problem is at all strong enough to cause me issues and while this may very well lead us to finding out wht else came with it, it does me no good to not be believed and there are few doctors that even deal in NCS. So I dunno now. I just want to not feel ill nd if that is not possible, then to have the official right to accommodations that will at least minimize the impact of this(these?) illness(es?). But without knowing how different the diagnosis would be if the doctor counted that I fainted 3 minutes after the pill rather than over 30, I'm not sure where to start.

[ParrotPal]

Hi Bluewind.  I hear your frustration and you have a right to feel that way.  Know that!  First, practice compassion and loving kindness - toward yourself.  That is first and foremost.  Yes, and take a break, even if it is a one day break from thinking about your illness or researching it.  I understand the feeling of wanting to know and knowing there is something wrong, but no one is helping, or not helping enough.  I have read so many posts on this site, then I think about how many more people don't post here and are in our situation too, and how many people feel physically and emotionally tortured but get no help or answers, zero.  It makes me sad.  But we do not to take a vacation from thinking about the illnesses and related.  

From what I have read thus far on AD, it sounds like just about anything can happen to a person with AD.  So what is normal now is not later.  Maybe that is what is happening.  It's like a moving target, never the same I guess.  

[bluewind95]

Heiferly: That's the funny thing... I'm pretty sure I've presented POTS symptoms before. I'm a curious person and I HAVE been using a blood pressure cuff for a long time. So since I felt ill when standing up, I took matters into my own hands, measured my pulse and bp, then stood up, took my blood pressure again when I started feeling ill and there WAS a difference. A pretty marked one, too. I don't remember the exact numbers anymore, but it was marked enough. Doesn't quite happen anymore if I take my meds, but still... The strange thing is that seeing the results of the test... it seems that I recalled EVERYTHING wrong. Which I find kind of strange. I don't recall being laid down and given the little medicine. I recall being upright and I recall this because I was playing my DS and I remember VERY clearly looking around as I tend to do when I have somethnig in my hand that needs putting down. There was nothing to put down my DS on. If I'd been laying down, I would not have needed to look around, I'd have popped the DS on my belly. AND since I have smething in my throat that is too big (tonsils? Dunno), I choke VERY easily. The litle pill they gave me would have been  serious concern for swallowing if I'd had to lie down with it face-up. And it took only a few moments after I took it before I fainted anyways, there is NO way I would have mis-remembered that... I was desperate for answers, I commited each detail to memory, reviewed it, commited it again... They did NOT lay me down after I took the medicine. They laid me down ONLY after I fainted. But the table on the test results that they gave me says they did... but that is not the case... I don't know how much this can skew the test results, as the cardilogist says the NCS is too mild BECAUSE he thinks (he doesn't believe me) that I fainted waaaay long after I took the medicine. But I didn't, I am VERY sure I didn't... how much can this affect the diagnosis?

vbc: Yeah, I wouldn't be surprised if I have more going on... I mean, the doctor said I have 8 out of the 11 tender points for fibromyalgia, but other than odd, ocassional joint pain and an old back pain, I don't have any rael pain. I've been referred to a rheumatologist, but... I dunno. I, too, hope to have all (the relevant) answers someday. And yes... I agree. I'm already exhausted, this is just too much. And work is... horrific. I mean, I had to put in an extra day yesterday... and it wasn't just a day, it was a 17-hour workday. I can't eexplain how tired I feel.

LaLa: Aye... I don't want to settle for those either. I mean... chronic fatigue, yes. But I think it's secondary to something else. Fibromyalgia? I... dunno, I don't think so. No wide-spread pain...

I wonder, though, about that test. I did NOT faint 30 minutes after the little pill. But the doctor won't believe me because that's what they wrote down in my test results.(along with "positive for neurocardiogenic syncope, predominantly cardioinhibitory).. And yet, I KNOW my heart is in pretty good shape. THere's this... I dunno, this measurement that they take in an echocardiogram. It's. expulsion rate or something. He says the normal is 50%, and it's bad if it goes below that. Mine is 70%. I wonder if this, too, hides the problem somewhat and that's why I don't faint as often as I do (even though I get pre-syncope far more often than I'd like). I duno... this cardiologist appontment gave me more questions than answers...

[LaLa4]

Hi,
I'm in the exact same spot as vbc, as far as the search for answers.  never give up, but a break here and there is necessary since the search is SO exhausting and frustrating. I think a lot of our illnesses, diagnosed or not, are secondary to something else, or at least intertwined with one or several other illnesses that all relate to each other.  So if you are told you have POTS or NCS and those don't seem to cover everything, then chances are there's something else going on and no one's found it yet. Don't settle for Chronic Fatigue or Fibromyalgia, largely because there aren't really any effective treatments for those, and it probably isn't the only thing going on.  Like maybe you do have Chronic Fatigue but it's probably explained by something else.
Anyway good luck, and come back here with any questions at all.

[vbc2000]

Hi There,
I can hear your dissapointment and I can definitely relate since I haven't gotten all the answers I need either.  I don't think you're at square one though.  Look at it this way - the way I do.  At least we have SOME diagnosis so I think that helps docs take us seriously.  I read here, and so many other places, that some poor people go from doc to doc for years not being taken seriously and being told it's all in thier heads.  At least we're past that point...thank God!

It does sound like you have more going on.  I think I do too, so I'm not done searching to make sure no other diagnosis applies.  I've been convinced for years that I have CFS and it seems to make sense now that it is under the AD umbrella.  Some of my symptoms, like being extremely fatigued all the time, don't make total sense with the NCS, but if the CFS is going on too...it makes perfect sense.

I know getting help and being your own advocate is exhausting - and this is when we're already exhausted to begin with!  I've decided that if I need a little rest or break from seeking answers/help, I'll have to take it, but for sure I'm not giving up trying to figure it all out and trying to get more help.  I feel like I'm starting to finally get answers to things that have been going on for years and years, and there's no way I'm going to stop now.
At least we're here for each other :)
Stephanie

[Heiferly]

(Sorry, I should have phrased that better ... you could have both ... what I meant to say is that have you made sure that POTS wasn't missed on your tilt interpretation.)

[Heiferly]

Sorry, I may be asking something that I should already know the answer to (I have severe memory issues).  Have you made 100% sure already that your tilt was correctly interpreted and that you have NCS and not POTS?