Tilt Table Results?

[KittyMama]

Hi everyone,

I had a TTT last february and wondered if anyone could help me with my results. The doctor said I did NOT qualify for a POTS diagnosis even though I "technically fit the criteria". (?) He diagnosed me with NCS. I guess I just wanted to know what you guys thought about it. Here are my numbers:

Initial supine: bp 111/74. HR 70 bpm.

tilting:

1 minute after tilt: bp 106/77, HR 102

3 minutes after tilt: bp 107/76, HR 92

5 minutes after tilt: bp 116/78, HR 104

7 minutes after tilt: bp 126/93, HR 128

9 minutes after tilt: bp 66/45, HR 45 (I fainted at this point)

I really wish they had tested me at 8 minutes to see how high my HR got before I fainted. But anyway, I think I have POTS too, since my HR went up by almost 60 in 7 minutes. Why would he not give me that diagnosis?

Thanks in advance!

[Krissy21]

I had results very similar to yours and they diagnosed me with both POTS and NCS. I'm not sure why he didn't diagnose you with POTS since your heart rate increased so much.

[Guest Alex]

KittyMama,

I agree with Krissy above. An increase in your HR of 30 bpm should be the only criteria needed for a POTS diagnosis.

Any chance you can get a second opinion? Also, your HR and BP should have been monitored constantly (beat by beat) during the TTT.

You can browse the forum or the research section of the website and you'll find lots of articles that list the criteria for POTS (an increase of 30+ bpm in HR when assuming the supine position or a sustained HR of 120+ bpm when standing).

Let me know if you need help locating those articles and I'll post/repost links to them so you can have them for further reference.

Best,

Alex

[Guest Alex]

http://crm.cardiosource.org/Learn-from-the-Experts/2013/02/POTS-Diagnosis-and-Treatment.aspx

http://circ.ahajournals.org/content/127/23/2336.full

Here you have 2 articles that list the diagnosing criteria for POTS.

Alex

[KittyMama]

Hi Krissy and Alex,

thanks! yes, I thought that was how it worked... HR going up more than 30bpm or to greater than 120, and since mine did both, there's not much ambiguity.

I heard the doctor say something to the nurse during the test (I think he thought I couldn't hear him)... "this isn't the pattern we expect to see with POTS. With POTS the blood pressure would be going up. She technically fits the definition of POTS, but she also fits NCS, and I don't want to give her both diagnoses." (As I type this it's striking me as really weird because I think he said I fit the criteria for NCS before I fainted! what?!) I don't know if I can get a 2nd opinion, especially since I'm moving away in a month... might not be worth it. But I've had enough bad experiences with this office that I at least don't think I'll be going back to them.

Thanks again for your help!

[Guest Hanice]

Hi Krissy and Alex,

thanks! yes, I thought that was how it worked... HR going up more than 30bpm or to greater than 120, and since mine did both, there's not much ambiguity.

I heard the doctor say something to the nurse during the test (I think he thought I couldn't hear him)... "this isn't the pattern we expect to see with POTS. With POTS the blood pressure would be going up. She technically fits the definition of POTS, but she also fits NCS, and I don't want to give her both diagnoses." (As I type this it's striking me as really weird because I think he said I fit the criteria for NCS before I fainted! what?!) I don't know if I can get a 2nd opinion, especially since I'm moving away in a month... might not be worth it. But I've had enough bad experiences with this office that I at least don't think I'll be going back to them.

Thanks again for your help!

OMG am I aloud to curse, yell and talk in disgust of this !!!! right now!? I'm so sorry that that doctor doesn't know how to practice medicine. Why would he not want to diagnose you with both if he knows you have both. I just dont get it. If it was me I would go to every reviewing sites and give him the juiciest review that he deserves! I can't believe that man. By your results it's obvious.

[Guest Hanice]

What is NCS? is it nerve conduction study is all I find :-(

[Guest Alex]

I forgot to mention that I was diagnosed with both and then the NCS dx was dropped because I don't normally faint but I fainted during my TTT. (NCS- neurocardiogenic syncope or vasovagal syncope) ...so I see no reason why someone can't have both a POTS and a NCS diagnosis.

Sorry you have to deal with this dr for the time being, but hopefully your moving will allow you to find someone to properly diagnose and treat you.

Hang in there and keep us posted.

Alex

[KittyMama]

Hanice -- your response made me LOL, thanks =D It's nice to get validation and respect in a medical context... I've almost never gotten it from an actual doctor! =/ And Alex is right about NCS... my doc calls it vasovagal but it seems like people use NCS more often on these boards.

Alex -- that's kind of interesting... I don't normally faint either. But if I'm standing still for a while I will feel like I'm going to faint and need to sit down. In real life I've only actually passed out twice, and once was when I was a toddler right after a vaccination. I sometimes wear a heart rate monitor around the house and I frequently see it in the 130s and 140s without feeling faint... I just feel bad and want to sit down, but it's not the same.

[Guest Hanice]

Yeah you guys don't "normally" faint but because you prevent it (I'm guessing). Gosh! If you were standing and walking for a while I'm sure you would, since you fainted in your ttt. My goodness. I think it's so wrong that they wait until you faint to get a diagnosis (which is wrong in it's self) and they get what they want and they still don't think it's enough! It seems so callous, so cruel!

[Guest Alex]

Hanice,

I actually don't faint. As you know not all POTSies faint. Throughout this ordeal, my BP has actually been behaving. I admit to having some weird fluctuations, but they were all die to meds that I have tried - particularly SSRIs, florinef and midodrine. Once I stopped taking these I'm back to my normal as far as my BP is concerned.

As far as standing - I can stand/walk around for hours without fainting, but I feel miserable lots of times as my HR can go pretty high - in rare occasions as high as 170-180 bpm. Still I have days when despite a standing HR of 120-130 I am as functional as can be (I do pay the price though if I over do things ). I have my own little theory as to why I fainted during my first TTT, but that's a pretty long story.

Unfortunately, the TTT is a modern form of torture (that's how I think of it anyway), but I also think it is an invaluable tool in diagnosing and treating people with dysautonomias. It can provide valuable information about what works well, but mostly on what malfunctions in one's ANS (and not only). The sad, cruel and unfair part (as you said) is when the dr in charge chooses to dismiss the results or doesn't interpret them correctly, but that is beyond our control I guess .

Alex

[Racer]

I agree with your doctor (dont shoot me yet, let me explain)

I had very similar tilt table results, and the same diagnoses. Since, I have talked to many doctors, cardiologist, and have spent endless hours researching this all. From this, my understanding is that in order to fit the criteria for pots, the blood pressure must not drastically fall. Pots criteria is a raise in hr of X number of beats per minute, that causes symptoms, without the blood pressure crash. NCS and the various other terminology for this, is defined by a crash in blood pressure that is causing the symptoms. When the blood pressure crashes, the heart rate rises in order to try to compensate. Since the pressure is dropping, the heart beats faster to try to get blood to the brain. Once the pressure gets so low, the heart cant maintain the heart rate, so it drops and you faint. Once a person hits that point, if they were to keep the tilt table up, the heart would most likely eventually stop beating. Once you fall to the ground, blood pressure equalizes quickly. In many people who dont totally faint, the body natural mechanisms are working enough to prevent the faint. The tilt table prevents those mechanisms from working, so many people who dont normally faint, might faint for the first time.

At the end of the day, my understanding is that NCS or pots can both be caused by dysautonomia. I received the autonomic dysfunction diagnosis because my cardiologist thinks that my NCS is caused by the autonomic nervous system. In many people with NCS, medications that raise the blood pressure, like midodrine or florinef, can prevent symptoms. People with pots benefit from a totally different set of medications, like beta blockers that prevent the high heart rates.

[Guest Hanice]

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[Chaos]

I had a similar situation locally with my cardiologist who refused to give me a POTS diagnosis and said I "just had orthostatic hypotension". It was very frustrating as I've had that for the past 30 years and never had all the problems I was having at the time I went to him for the TTT. Then I went to Cleveland Clinic and had similar test results and they gave me both the POTS and NCS diagnoses along with a couple of other ones. Ironically when I came back home and showed the CC results to my doc he said he didn't understand how they could say that, so my local chart still just says I have OH.

So now both Mayo and CC say I have POTS and NCS (or NMH since I've never fainted even with BPs in the 30's/20's) but my local doc still says I have OH. Whatever.....

It's actually not uncommon to have both since POTS is diagnosed in the first 10 minutes and it may take much longer to get the vasodepressor and vaso-vagal reactions that lead you drop your pressures and/or faint.

[KittyMama]

Racer - do you mean that my heart is beating faster to keeo my blood pressure from dropping, and then at some point it can't keep doing it and both crash? That is definitely how I understood what was happening during my test... but the blood pressure crash didn't actually happen until the very end when I fainted. During the test, I definitely had symptoms before my blood pressure fell.

Alex -- yes, it is torture! Right as I was about to faint, I was thinking "WHY did I sign up for this? What made me think this was a good idea? How could I have been so stupid?" I was saying "muh meh meh enhh" (non-linguistic expressions of extreme misery). This is not a test I ever want to do again!

chaos -- that's confusing! you would think an "ordinary doctor" would listen to what the CC and Mayo are saying. I can't imagine a bp of 30/20, that must feel terrible.

The thing that annoys me about the NCS but not POTS diagnosis is that from reading about NCS, it seems to be a response rather than an illness. Meaning that if someone who is normally healthy faints once in their life, that person has NCS. But with me... it's obviously related to standing, my heart rate is elevated while I'm feeling faint, and I sometimes have symptoms between episodes. And I run into these problems all the time. It would be different if they called it "postural NCS syndrome"... then I feel like it would capture more of what I experience. Because to me, a diagnosis of NCS sounds like a diagnosis of "I fainted at least once in my life."

[AshleyPooh]

This is all very interesting. I have my tilt table test tomorrow, so I'm expecting some interesting results. My bp drops and heart rate goes up, so I'm assuming I'll probably get the NCS diagnosis as well. I experience at least some degree of NCS symptoms at all times whenever I am standing, so I totally agree to call it a 'reaction' rather than an illness seems wrong somehow. Also, after whatever diagnosis I get, I am making sure they rule out any other possible cause, like adrenal dysfunction among other things. don't want to treat the symptoms if i can treat a condition. But we'll see! I'll report back tomorrow to let you know how it goes. Thanks for this post, it really helped!

[KittyMama]

Ashley -- good luck! The experience will probably not be the most fun you've ever had, but hopefully the data will be worth it! =)

[Racer]

Racer - do you mean that my heart is beating faster to keeo my blood pressure from dropping, and then at some point it can't keep doing it and both crash? That is definitely how I understood what was happening during my test... but the blood pressure crash didn't actually happen until the very end when I fainted. During the test, I definitely had symptoms before my blood pressure fell.

My understanding is that heart rate increases to keep blood pressure from falling. It is the crash that confirms something like NCS over pots. I blackout sometimes within seconds of changing positions, but it is without the high heart rate increase seen in pots.

The thing that annoys me about the NCS but not POTS diagnosis is that from reading about NCS, it seems to be a response rather than an illness. Meaning that if someone who is normally healthy faints once in their life, that person has NCS. But with me... it's obviously related to standing, my heart rate is elevated while I'm feeling faint, and I sometimes have symptoms between episodes. And I run into these problems all the time. It would be different if they called it "postural NCS syndrome"... then I feel like it would capture more of what I experience. Because to me, a diagnosis of NCS sounds like a diagnosis of "I fainted at least once in my life."

I think your getting to hung up on wording. They might call NCS a "response" because it have a underlying cause. For instance, my doctor thinks my NCS/orthostatic intolerance is caused by dysautonomia (what has brought me to dinet), so the autonomic nervous system is not functioning properly, and not sending the message to equalize my blood pressure when changing positions. So a person with NCS can have the same underlying cause as a person with pots. It is my assumption that people dont get a dysautonomia diagnoses (or even a TTT) for simply fainting once in there life.

For me, I dont care what they call it, or what people might think. What is most important to me is that I get the proper treatment for the correct disorder!

[KittyMama]

Racer-- yes, I am hung up on the wording! I hate so much that my diagnosis is basically "fainting". It feels to me like I'm getting diagnosed with a symptom rather than an underlying disorder.

I'm curious, how do you understand POTS? I mean... if someone has POTS and not NCS, what happens to them when they stand and why? (obvously the heart rate goes up, but is it for some other reason, rather than trying to keep the blood pressure up?) this is really interesting!

[Guest Alex]

KittyMama,

this is straight from the horse's mouth - two articles on NCS by Dr Blair Grubb

http://circ.ahajournals.org/content/111/22/2997.full.pdf+html

http://www.sjhg.org/wp-content/uploads/2012/10/neurocardiogenic_syncope_3_05.pdf

And then there is this other article that deals with coexisting NCS and POTS

http://www.dynainc.org/docs/ncs-pots-combined.pdf

Hopefully these will help with the terminology and more.

Alex

[KittyMama]

Alex,

thanks! this will give me some good stuff to read while I travel this weekend. =D

[pink1975]

"Unfortunately, the TTT is a modern form of torture"

Absolutely agreed! That was one of the worst experiences of my life, but I finally failed a medical test, lol. I am not a fainter (other than a couple of times, both in the middle of the night when I got up to check on kids). I almost fainted during my tilt table test, but they laid me flat right in time to stop it. During my TTT, my heart rate shot up to 170 and my blood pressure was elevated (not sure what though, I got pretty confused) all in less than 60 seconds. The Dr. told me he would have lowered my sooner than 60 seconds, but the blood pressure machine took that long. During this very LONG 60 seconds, it felt like all of my blood was trying to exit through my feet.