Tilt test done

[POTSMama]

Hi all,

Well, I had my tilt test this morning and to my dismay/frustration, it did not elicit my symptoms of episodic extreme blood pressure drop (followed by a transient extreme rise then return to normal levels) and near-fainting spells I've had several times since being off the betablockers for the past 3 weeks (the doc wanted to test me without meds and also the betablockers had been driving my blood pressure down too much and suppressing my cardiac output to much). Now I haven't talked to my doctor yet, but the nurses who gave the test told me my results were negative because I did not pass out. Well, my doctor is to call me tomorrow with the results of that test and a 24 hour urinalysis I did over the weekend to look for excess catecholamines, and I want to be prepared to discuss this with him - - so I have a couple questions for you.

I have read that the "sensitivity" (or essentially how often it gives a positive diagnosis when there should be one) and the "specificity" (essentially how often it gives a negative diagnosis when that is really the case) of this test isn't perfect - - I think I read it's more sensitive than specific, but still only like 70% accurate in detecting NCS/POTs. My understanding is that a positive finding is the gold standard of diagnosing NCS but that a negative finding doesn't mean you don't have NCS or POTS. So my first question is can anyone address this - - have any of you had a negative tilt test but still been diagnosed with NCS or POTS and if so, was your physician just basing it on your symptoms or other tests?

The other thing is I wonder how well this test was administered. They tilted me to 70 degrees for 30 minutes, but told me I could move around, stretch my legs and arms, talk, and that I didn't need to close my eyes - - shouldn't one be pretty still for this or does that not matter? And they also only took a blood pressure reading every 5 minutes, but when I've had my "episodes", the blood pressure drop and then rise and then normalizing sometimes all happens pretty quickly by my blood pressure cuff readings so I wondered if they could just miss it with 5 minute readings (Granted, though, I didn't feel any symptoms during the test except numb and tingling hands and feet and vague light-headedness, but then again I don't always have an episode after standing awhile - - they're more sporadic). Also, they didn't give me any kind of pharmaceutical to stimulate an adrenalin-like rush, which I had read online was sometimes used with this test and I thought would be useful since I also think I am a bit hyperadrenergic - - is the test then usually done without any medications administered?

The other issue is that they told me it's a negative result if "you don't pass out". But my doctor knows I have never actually passed out during an episode, but that I just feel like I'm going to, so why would he order this test if that was the only "positive" finding? That would make little sense. Also, I think POTs fits me more than NCS as a diagnosis, although I guess it's possible I have both - - so if it's POTs wouldn't they see an increased pulse (I can jump 40 bpm when standing up and walking across a room after sitting awhile) when I'm first tilted up and that would be a "positive" sign of POTs? I just want to know that my doc knows how to evaluate this test before I talk to him tomorrow, so if anyone has insight/info, I'd appreciate that.

OK, so those were the questions, and here's the complaint, which I know many of you will understand! - - The test was given by an RN and an LPN and they were nice enough, but when the test came out "negative" as they put it (in the sense that I didn't pass out, although I haven't heard from the doctor yet to see if his review of the results notes anything else), one of the nurses asks me if I'm maybe not just an "overanxious" person and that this could be causing these episodes! I was utterly astonished, especially since my doctor believes it is this physiological condition, and she passed such a snap judgment! But I was also severely annoyed to be dealing with that again since for years I had some doctors pass off my symptoms as panic disorder even though that really didn't fit (I wanted it too! That's more treatable, but it just isn't that). Yes, I admit I was probably acting a bit anxious before and during the testing, but only because I hate these episodes and was anticipating I might have one. I am proud to say, though, that I kept my cool and just looked at her and said something like "Realize that I'm a Ph.D medical researcher and I'm well aware that this test is not entirely sensitive or specific, despite being the gold standard with a positive result - - a negative result does not rule out a dysautonomia diagnosis and place the patient in the category of anxiety disorder. You might want to do a little more research on this since you are giving these tests". Then I left before she even had a chance to respond. But boy did I feel steamed on the drive home, the more I thought about it! Oh well.

Anyway, thanks for any input - - I know this forum is for laymen not M.D.s but I'm guessing many on here have done a lot of research and know more than your average medical practitioner about this disorder anyway (certainly more than the nurses who gave me the tilt test today!).

Sincerely, Carol

[nantynannie]

Carol,

I do not know much about this stuff, but I can tell you for certain that you should not have been allowed to move around during the test. The whole point is to remain immobile because most of us compensate for the BP and high HR by moving our legs and arms around and bending over which can releive/diminish symptoms and help with circulation. The whole point of the test is to have your movement restricted so that you cannot compensate. I had an even more severe reaction than normal during tilt because of this.

Did the nurses mention that your heartrate went up? Did it that you know of?

Also, the BP every 5 minutes is not adequate. Mine was every two minutes and they did not catch my immediate drop in BP upon standing because it then rises considerably so they assumed that I was immediately hypertensive rather that hypo then hyper. They caught it at the end after 30 minutes when it dropped again. I know there are some places that have continuous BP, but these are few and far between because it is a new technology.

I am curious as to your excess catacholamine test because mine was negative despite "excess catacholamine response" during my tilt and my cardio's insistance that I have a pheo tumor.

I am sorry that you did not get your typical response during tilt. I was fearful of the same happening to me. I think to some extent we are so afraid of not being believed that we NEED to have these tests come out positive for our own peace of mind and well being. I would explain to the doc that you did not feel as you usually do during the test and ask him to redo it. Also let him know about the moving around.

Sorry I couldn't help, maybe someone else will have some advice.

Ann

[POTSMama]

Ann,

Thanks for that support - - I'll mention these things to the doctor when he calls. I did wonder if it was done incorrectly. In fact, when I started to get dizzy and feel tingling in my feet and told them so, the LPN told me to flex and stretch my legs and arms to compensate. So perhaps I compensated right out of an episode! Aarrggghh. Did you then get a pharmaceutical IV injected during your tilt test to stimulate your system?

A note re: pheos - - several cardiologists and endocrinologists I saw in the past thought I might have a pheochromocytoma, but my 24 hour urinalysis kept coming out negative so they assumed it was not (also I did not have any problems during my pregnancy and I was told that all "heck" will break loose with your body if you have an undiagnosed pheo during pregnancy). But really the definitive test if he thinks you have a pheo -is a CT or MRI imaging study, I believe. They usually only do those if you show high catecholamines on 24 hour urinalysis or blood results, but still it doesn't make sense to me that he'd insist you have a pheo but not go looking for one if so since pheos can be life-threatening but you can be "cured" with their removal. And of course POTS symptoms can mimic a pheo, but the difference as I understand it is that pheos don't cause blood pressure drops but only rises and usually very high blood pressure consistently. Just some thoughts (I'm not an M.D. of course, so take this as second hand info).

Carol

[nantynannie]

Carol,

Thanks for the info! I am getting a CT on Thursday for the supposed pheo. I do not think that I have one, especially after talking to so many on this board who have similiar excess adrenaline type symptoms. I just can't figure out why my urine test was negative because I have many symptoms that point to excess adrenaline. What do you think?

I CANNOT BELIEVE THAT THOSE NURSES TOLD YOU TO MOVE WHEN YOU WERE HAVING SYMPTOMS!!! I am no doc, but I am quite certain that it effected/affected your test. You should insist on a new test, possibly at a different facility if feasible. They obviously do not know what they are doing. Printout some stuff from the website so that you have something to refer to when you talk to your doc. Maybe he will understand right away that it was not done properly. Also, you should not have to pay for a new test. It should be free. I know this is all easier said than done, but it is worth a try because they definately messed it up.

As for the isuprel, my heart rate was too high so they did not give it to me. I guess it is used to induce a high heartrate in the event that you don't have one during the test. Did they give it to you? Sorry if you already answered that one.

Ann

[BuddyLeesWife]

My husband was diagnosed with NCS even though he did not pass out during his tilt table test. Approximately 9 months later we consulted with Dr. Grubb and he confirmed the diagnosis. He performed the "poor man's tilt" in the office, taking his blood pressure after he was sitting for a while and then having him stand and taking it again - his BP dropped 30 points. We have never been able to reproduce these results at home. Stress and anxiety are definately triggers for my husband's syncope and as I understand it, the same neurotransmitters (serotonin, norepinepherine & adrenaline) that control the fight or flight response also play a part in regulating BP. The good news is that my husband has not passed out in over 2 1/2 years, unfortunately he still has periodic episodes of pre-syncope and excessive fatigue.

[POTSMama]

Ann,

No, they didn't give that medication to me during the tilt test, yet I don't think my heartrate was that high during the test (from their comments). In fact, I had asked them before the test if they were going to inject my IV line with something if the test without was negative, and they looked at me like they had no idea what I was talking about! They said there were no injections in this test; that the IV line was only for cardiac emergencies during the test. And yes, now I'm realizing that my movement may have stopped the symptoms from fully developing. OK, I am convinced that my test wasn't a good one and will definitely talk to my doctor!

On the other thing, I've been told for years that I have a "hyperactive adrenal gland" and that this can occur without being a pheo or other tumor fo the gland. To some extent it was just a catch-all diagnosis because they thought it had to be that or panic disorder and the doctors who believed I wasn't prone to panic attacks said it was that. Of course, POTS has only been a name given to this disorder since like 1996 as I understand it. Now that I know I probably have POTS/NCS I have found some references (sorry, I've done so much reading, I don't know where I saw it) to the fact that some people with this are "hyperadrenergic". I think that when your autonomic nervous system isn't working well, it can cause responses similar to those with a pheo (like adrenaline surges) but still not be anything wrong with the adrenal gland. I definitely get episodes that feel just like the tachycardia and the blood pressure swings when I get an adrenaline surge (like if someone cuts out in front of me in traffic causing a near-accident, or when my almost 20 month old accidently fell head first into the bathtub full of water I was running for big sister last week - - fortunately, I never leave her around water and fished her out immediately!). I honestly don't yet have a real grasp on the physiology of this thing, but I think it makes sense to appear to be hyperadrenergic, not have excess catecholamines, and not have a pheo. I have read that there is some research showing TRANSIENT surges in serum catecholamines with POTS that then don't show up other times or on a 24 hour urinalysis.

But good luck on your test! And thanks again for supporting my feeling that my test was badly done by a couple of nurses who really didn't know what they were doing...

Carol

[blackwolf]

Dear Carol, you should NEVER move during a TTT!! I was strapped down in 6 places to prevent it. Even at Mayo, I was told not to move as it would alter the test results. As to a "positive or negative" result does not mean you must black out.

I never completely blacked out(either in Sioux Falls or Mayo) and was told my test results were positive. I was started on ProAmatine(Midodrine) that very day. I was even given a pair of TEDS hose from the hospital for the trip home to help with any problems!

They aparently didn't know what they were doing!!

My Bp bounced around for about 10 minutes before it took a big plunge. My heart rate dropped and then shot up like crazy. THEY stopped the test when I got close to blacking out but didn't.

TELL your DOC what happened..

Good Luck, Blackwolf

[Merrill]

I just thought I'd add this: Dr. Robertson, leading dysautonomia research physician at Vanderbilt, told me that 25% of completely normal healthy people pass out when they are on a 70 degree tilt table test. Clearly some people with POTS and/or NCS will also pass out on a tilt table ... but others with these conditions will not. Whether you do or don't pass out is not diagnostic! Those nurses should not have said your test was Negative!!! Ridiculous! (Nor should they have said passing out = a postive result for NCS or pots, especially since 1 in 4 healthy people pass out. Sheesh!)

I was tilted for 10 minutes (the length of time I've read is appropriate for diagnosing pots--I'm confused about why you had to stand/tilt there for so long!) and during that time, heart rate and bp were recorded every minute or 2. I agree that 5 minutes sound way too long. I've also read in medical journal articles that to diagnose pots, the heart rate must go up 30 beats per minute or more. It's more about the hr than the bp, because many people with pots do not have blood pressure swings--even though they have blood pooling in the legs and tachycardia and other symptoms of autonomic nervous system malfunction. Also, I was completely strapped in as well; I don't recall that I could have moved anything, including my arms. I struggled to shift my feet a little because I was so uncomfortable...I didn't pass out, but I was lightheaded and woozy and frankly, never felt so strange in my entire life. (My hr went up 40 beats.)

Also, if your 24-hour urine tests have been coming back normal, then I don't think you can have the adrenal tumor described.

Were you taking beta blockers along with any other meds like midodrine? Or just the blockers? It sounds like they may want to make some adjustments to your medications... Anyway, good luck--I hope you get some answers soon and that your doctor is sympathetic to your frustrating test experience.

[purplefocus]

I agree with the others, I can't believe they let you move during the tilt table test. I also was strapped down in several areas. I had and IV but I also had an aterial line that was internally monitoring my blood pressure. Did they do this? It sounds like the nurses didn't know what they were doing. I had nurses doing mine but before they could start they had to wait for the doctor to come in to do something then they started, then after we did the test (and I crashed quickly) the doctor returned. These nurses had set up on a table the injection if I didn't respond to the tilt table test so they could make me go into my passing out stage. I really think you should ask for another. Apparently these people did not know what they were doing.

Paige

[Ernie]

Hi Carol,

I am sorry that your TTT was such a mess. There are 2 reasons we are strapped on the TTT. 1- So that we don't fall on the floor and hurt ourselves when we faint, 2- so that we don't move around to compensate for the symptoms. It seems that the nurses were not qualified to do this test.

No fainting does not mean negative TTT. Many POTS don't faint and you may be having a good day. Also, the fact that the nurse told you to move around when you started to become symptomatic changed the data.

I have read that the normal lenght of TTT is 45 minutes. Some do 30 minutes and then inject the isoproterenol to trigger an episode. Some doctors wait until you faint and other doctors bring you down when they see the BP and HR going down enough.

Taking vitals every 5 minutes is way too long. BP can crash in seconds and they will never see it. Also, they will miss the fluctuations. I don't know what they were looking for but it seems that they don't know much about dysautonomia.

I would certainly ask for another TTT in a different hospital and check their credential before going.

I understand how upset and frustrated you are. I am proud of the way you answered the nurse just before you left.

Ernie

[POTSMama]

Thanks so much to everyone who responded here to me! I can't tell you how frustrated I feel about this, but at the same time it's wonderful I have found this forum to confirm what I was thinking - - I had a totally crappy test that is probably meaningless! Now there is a chance that the doctor will look at the results and see something and know more than the nurses, but I'm not holding my breath. And now I will have to find a way to tell my doctor what happened (that I believe the test was completely improperly done) so that he isn't insulted (he referred me there, after all) and so that he'll believe me. Of course, I may also still need to educate him on POTS - - he has said he thinks I have NCS but I really think, based on my symptoms, that I more likely have POTS or even symptoms of both. I will give him the benefit of the doubt and see how he responds and what he tells me his diagnosis is when I talk to him. Now if he chooses to decide I don't have a dysautonomia after all based on that defective test, then I will have to figure what to do next.

What is most annoying is that I went through all that anxiety and time and money this morning (hospital insurance co-pay), plus my husband had to take off work to babysit as our 4 year old is ill today so we couldn't leave her with the sitter. I wonder if my insurance will even pay for a re-test since they'll say I had one test already that was "negative" - - somehow I doubt the doctor will say it was incompetently done and argue with the insurance people for me. This makes me ready to fly to Vandy or Grubb or somewhere they know what they are doing, which I will consider if I can't get better care here in Denver than this. But I am fairly convinced I have POTS/NCS one or the other or both (and no, I don't think I have a pheo but the doc wanted to do one more urinalysis to be sure) and since they're treated largely the same way with pharmaceutical drugs, maybe it doesn't matter for the moment. My symptoms were largely under control until I had to go off the betablockers a few weeks back. I was taking 25-50 mg of atenolol a day and it was just too much for my system apparently, so I'm thinking that maybe if he puts me on a different beta blocker like metoprolol at a very low dose it may do the trick without making my BP and cardiac output too low. Well, I'll let you-all know what happens.

But thank you, thank you, thank you, thank you, everyone, again, for all your info and support!

Carol

[briarrose]

Carol

Sorry I didn't read what everyone else wrote tonight, so I might be duplicating. But when I had my tilt table, they absolutely would not let me move, talk or anything else. They said that talking could cause a false positive because of stimulation.

Futhermore, after 30 minutes if the test is negative they are supposed to give you medication to stimulate your heart.

I would demand a retest by someone who knows what they are doing. I might also write a complaint about your experience, professionals need to start being held accountable for their poor judgement and behavior.

You should always ask for a copy of whatever tests you have done. For you as well as whatever other doctors that you see. I was VERY suprised at some of the things that I found out from reading my own test results. They told me that my heart rate increased 30 bpm, giving them the positive result. What they neglected to tell me was that my HR actually rose nearly 90 bpm at one point and my blood pressure was all over the place.

I didn't know they had detected VT until I got my king of heart readings. I didn't know many other things until I started to do my own follow up.

Here is a pretty good website to answer your questions.

http://cpmcnet.columbia.edu/dept/syncope/tiltfaq.html

[KarenLorrel]

I was told that 10-13% of the POTs patients do not pass out on the tilt table.

[Kristen]

Hi,

I had a tilt table test that I do not think was done very well either. I was up for 45 minutes, they never gave me an injection and although I was strapped in, I was never told not to move. I was light headed and uncomfortable and my heart rate jumped up 50 beats, but they said the test was negative. They remarked that it was "funny" my heart rate went up so much, but that it must be because I was dehydrated - they said not to eat or drink anything before the test.

It was only three years later, recently, that a new doctor looked back at the test and said the results showed I have POTS. I don't know about your doctor, but do make sure he or she knows about POTS - everything would have been so much easier for me if they had realized what my increased heart rate meant at the time, rather than just thinking it was "funny."

Kristen

[Jersey Girl]

I also had an abnormal tilt test the first time ( I have failed 3 of them) but wasn't given the diagnosis of POTS until 1 1/2 years later. You should be off all medications for a few days before your test, not drink or eat anything the day of your test, and have a physician present. You should not be given anything to help you faint. ( as I was) You don't have to faint to have POTS.

[Guest Julia59]

I had a TTT today....................

Very normal.....................My HR went from 70 lying down to 80-90 at the 70 degree tilt and stayed that way the whole test!

I'm diagnosed with POTS by Dr. Grubb-----three years ago. This was based on another test that I PASSED.

I realize it's important to be off the meds before the test. I have been on my meds both times. The propranolol controls the hight HR/tachycarida. My blood pressure on today's test went from 138/76 to 100/63 27 minutes into the test while HR stayed in the 80/90 range. This is on 20 mg of propranolol a day. I know if I went of the drugs I would have tachycardia spells all the time---with severe shaking.

The test was done for me to take to New York/Dr. Milhorat. Basically it was used to check on virtigo issues which I don't really have. It's more of a lost balance issue---always with exertion.

I never really had big OI issues------but I do have all the other crappy POTS symptoms.

Julie :0)

[Ernie]

Hi Julia,

I don't understand why they tilted you with your medication. Is that a usual procedure or is it because they wanted to know how your body behaves with proper medication?

Ernie