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Tilt Table Test Results


southbel
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So, I just came home from the TTT. Not fun but definitely wasn't as bad as I thought it would be. They hooked me up to everything and I laid on the rather uncomfortable table for over an hour before it began. My baseline HR was 66 and my baseline blood pressure was 100/68. On the tilt, I immediately felt dizzy and could tell my heart rate went up. During the test, I did not pass out but did start sweating and my vision got really difficult to focus. I became a bit short of breath, had a bit of a tremor issue and just felt overall poor. My feet really started to hurt and burn a bit the longer it went on. I didn't mean to but I know that I kept bending my knees and slightly fidgeting to stave off worse symptoms. It was really hard to not do this as it has become the way I keep the symptoms from progressing.

The doctor said he wasn't going to do the second part of the test with the medicine they inject because I was too young (I'm 39) for it to be of any use. He said that I had a perfectly normal TTT. My heart rate went up to around 110 in the first minute of standing and stayed there minutes. My blood pressure went up to 120/80-130/90 and stayed there for the entire 30 minutes. The doctor told me because I didn't pass out and I didn't have a drop in blood pressure that I was perfectly fine and suggested I see an ENT.

I am a little confused because he seemed to be confident on my problem yesterday and even though I gave him my symptoms and how my heart rate, etc reacted. I am starting to feel a bit like a crazy person because I figured I met the criteria for POTS but the doctor said my blood pressure didn't decrease and thus I do not have anything wrong. Any words of wisdom on this? In all fairness, he never said I have POTS just that he 'knew' what was wrong with me and that the TTT would show the problem. The nurse did tell me that they rarely do tilt tests and this was the first that doctor had done in over a year. Does that have an impact? Am I really just barking up the wrong tree? I would really like to get my life back now!!

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That doesn't sound right... From what I understand, a jump in heart rate over 20 points OR an increase to 120 is positive, regardless of bp drop. It is NOT normal for your heart rate to jump that much just from standing up! Many of us have seen multiple physicians and had many poor diagnoses before someone finally gets it right. Don't give up, and don't settle with the opinion of one doctor.

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Yes, I think that's where I'm confused. When I read the criteria for POTS, it seems like I meet it pretty well. The only oddity for me is that my blood pressure rises quite a bit and I notice a lot of people that post on the board have blood pressure that drops and causes them to pass out. Don't know why I pass out on occasion. Do not know why my blood pressure seems to have different reactions and is not predictable. I am used to a really low blood pressure but this bit where it rises quite a bit while standing is new. I was further confused when the doctor said that my increased heart rate was completely normal because everything I have read seems to disagree with this position. Is POTS really that rare that my doctor would not know about it? Because I found out about it pretty easily with just a google search of my symptoms.

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I would try seeing a neuro that performs other ans testing and is more familiar with pots? have you ever done a heart holter 24 hr? That is what first clued my doctors in. Also, when I stand my bp goes up as well as my hr, not down and I have been dx with hyperpots. Not everyone's bp drops, some of us our bp goes up. I never did the tilt table test as both my cardio and neuro said that not all pots patients pass out and when I called to schedule the ttt I specifically asked the nurse who performs the test what the criteria to get dx for pots via ttt.....she said to get dx I had to pass out. Since, like I said I have never passed out I decided to forego that test........waste of time and money.

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I would try seeing a neuro that performs other ans testing and is more familiar with pots? have you ever done a heart holter 24 hr? That is what first clued my doctors in. Also, when I stand my bp goes up as well as my hr, not down and I have been dx with hyperpots. Not everyone's bp drops, some of us our bp goes up. I never did the tilt table test as both my cardio and neuro said that not all pots patients pass out and when I called to schedule the ttt I specifically asked the nurse who performs the test what the criteria to get dx for pots via ttt.....she said to get dx I had to pass out. Since, like I said I have never passed out I decided to forego that test........waste of time and money.

The 24 hour holter monitor is one of the things that led to this test. Well that and my passing out a few times. My PCP had done that and referred me to the Cardio (which got me to this EP) because my 24 hour holter showed drastic changes and one she said was concerning of 49 to 126 heart rate but that my heart rhythm was normal. Every other test shows my heart to be very healthy and function fine (stress test, echo, scan). The only thing that was slightly abnormal was on my stress test. My test was about 4 minutes long because I got such a fast heart rate so quickly. The Cardio said that it was perfectly normal heart but it was just very fast.

I like my new PCP. I have an appointment with her next week. I think I will ask her opinion on this and specifically ask about POTS. Thus far, the doctors are all very nice and seem to take my symptoms seriously. It does help they have actually seen some of them in action and the ER got to see one of the passing out episodes. So, it's pretty well documented and perhaps that helps. My only issue is that I'm just not getting any answers as all of my tests keep coming back 'normal'.

From what I'm seeing, perhaps my TTT wasn't normal after all. Interesting.

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My daughter's blood pressure was normal during her TTT and she didn't pass out, but her heart rate did go up 40 points upon standing. Her cardiologist said this was a positive TTT for POTS. You might want to make an appointment with a specialist who deals specifically with POTS to see what they say.

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Thank you all so much for this information. I guess I am disappointed because the doctor seemed so sure before I took this test and now I feel like I am back at square one.

Some questions though. First, I feel absolutely awful right now; so shaky and tired. Is that normal after the TTT? Second, I was reading about other people's TTT and one thing I wanted to ask on that. They gave me a bag of IV fluid before the test and then hung another during the test. Would that make any difference in my results?

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You are not at square 1! It sounds like you have a Cardiologist who really doesn't understand pots and that unfortunately is a very common thing. Spend much time on the forum and you will see that over and over. I don't know what part of the country you are in but consider going to one of the more well known Drs. at least to get a diagnosis and started on a treatment plan. If your primary is willing she may even be able to monitor you with the help of one of those Drs.

I am surprised he gave you fluids before? I haven't heard of anyone getting fluids before the test, but maybe it's done and no one has said. When getting a second opinion be sure to mention that. Yes, it is normal to feel bad after a TTT for even several days, but it depends on who you are. My son felt bad but didn't totally crash.

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An increase in HR such as yours during my TTT was what helped getting a diagnosis in my case.

it's only my opinion, but the bag of saline ( i presume) they gave you before the test sounds strange - a lot of POTS patients (particularly the hypovolemic ones - those with low(er) blood volume see an improvement in their symptoms after a bag of saline), so i am not sure what your dr's rationale was but it might be worth a question.

it is normal to feel pretty awful after the test. I know i did after my first test... not so bad after the 2nd one - practice makes perfect :).

My tests were slightly different than yours though - I guess each hospital has a slightly different procedure - i had my catecholamine levels checked (blood work) during the test lying down and standing, then, after the tilting part, again while lying down and monitoring my hr and bp they gave me 2 different substances by IV - isoproterenol (or so) something similar to adrenaline to speed up my heart in a controlled environment, then something to counteract that, and then atropine (i cannot remember what for) and finally propranolol to counteract the atropine. The worst part for me was the aftermath of the atropine.

I would push for some answers and a second opinion if possible. Also, as it was suggested by others, find an article from a reliable source - one written by Dr Grubb, Dr Raj, etc that mentions the diagnosis criteria for POTS (an increase of 30 bpm or a HR of at least 120 bpm upon tilting) and take it with you to your dr appointments.

Sorry you're a bit confused and maybe frustrated right now. I hope you'll find a good team of doctors to help you get some answers and get better. Plus you'll always have this forum.

Best,

Alex

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Sorry you had such a frustrating experience today! Yes, it does seem like you met POTS criteria from your results.

In a normal person, if their BP drops when they stand up, their HR should increase to try to compensate and keep blood getting to the brain. POTS is unique because these patients were found to have that compensatory increase in HR and DIDN'T usually have that drop in BP to account for it. I know there are a lot of us who have both POTS and NMH/NCS, and so we do eventually have a drop in BP with standing but POTS by definition should NOT have a BP drop associated with it. There are also people who are diagnosed by some doctors as "hyper-pots" and they will have an increase in BP, along with an increased HR when they stand.

It seems very odd to me that they gave you fluids before your TTT. As others have mentioned, that's actually a treatment that some docs are using now to help POTS patients. I had 4 TTTs done at nationally known centers, as well as locally, and while they did place an IV needle, they did not run any fluids until after the test when I had a bad reaction.

You might want to get a second opinion with a doctor that knows dysautonomia better. It's very frustrating to work with a doc who doesn't have a good understanding of the condition. I had a similar situation with my local cardio after my TTT, so had to travel cross-country but found it was such a relief to get a "real" diagnosis with docs that understood it better.

I was wiped out quite awhile after my TTTS, so I think that's not abnormal for a lot of us.

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Once again, I want to thank all of you for your replies. After the test was read normal, I really was starting to think I'm a crazy woman! My husband keeps trying to convince me that I am not and he was the one that encouraged I post my results to all of you. As to the bag of IV fluids, I thought that was odd too. However, I think there's actually a bit of a snafu that caused it. They had me arrive an hour and a half early to do the AM Cortisol blood work. That, of course, only took a few minutes. The nurse went ahead and hooked me all up, strapped me to the table, etc because she thought the doctor could get there early and go ahead and get my test done. Well, I ended up staying on that table for an hour and a half because he couldn't get there early. I figure that's one reason that I got the two bags of IV fluids instead of just the one during the test. Although, it sounds like I shouldn't have had any from the responses here.

The other thing my husband and I were thinking is that the doctor said after the test that I am likely dehydrated and unconsciously not drinking enough. I have to say that I pretty much reject this theory because I drink ALL the time. I am always so darn thirsty that I must drink my weight in water and gatorade. If dehydration is the cause of my fainting episodes, then frankly I don't know how I can get more fluid in me.

Although, I do want to stress that while the fainting is an issue, it's actually not my primary complaint. It's the dizziness, nausea, headaches, and just plain sick feeling I get just from standing. I had been so puzzled and frustrated until I found the definition and people's stories about POTS. I felt like I was reading my own symptoms! I am supposed to see the doctor again in a week. I think I will ask him specifically about POTS. Shoot, I want to see if he's ever even heard of it because that could be a rationale for how he performed the TTT and why he read it as 'normal'. Then again, perhaps I am just trying to rationalize everything but I do want to see his thoughts on POTS and if it has been excluded as a cause for my issues.

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Sorry to throw more confusion into the mix... but I'm wondering why your doc felt it was unnecessary to do the second part of the test? In my limited experience, that's when they inject (via the IV) a synthetic adrenaline and then continue the tilt procedure.

I had two TTTs. In the first, like you, I was told the results were "perfectly normal" (despite the fact that my initial supine BP was something like 79/45). They didn't do the adrenaline portion of the test. However, during a subsequent TTT at Johns Hopkins they did do the adrenaline administration. My BP and HR plummeted - I don't think I completely passed out but was pretty close. Based on that, I was told I don't have POTS, but I do have neurally mediated hypotension (NMH), which you also see referred to as neurocardiogenic syncope. It's another form of dysautonomia. My HR never increases significantly (as it would in POTS); instead, in response to certain stressors, my HR and BP drop inappropriately. I'm not sure why they felt your age meant you shouldn't be tested for this - the doctor at Johns Hopkins who was the expert on NMH is actually a pediatric cardiologist - Dr. Peter Rowe.

It doesn't provide me with a huge number of answers, but I do find it helpful to at least have a starting point, instead of the frustration of yet another test that says I'm "perfectly normal!" I hope you can find some answers.

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This whole experience can be so frustrating sometimes! I did the tilt table test at the Mayo clinic under Dr Goodman. Up until that point I had experienced both fluctuations in BP... when I was first in the hospital, my BP would go sky high along with my heart rate upon standing. Later, when I finally got diagnosed by a cardio specialist at Stanford my BP was dropping significantly upon standing. At the time I did the TTT at the beginning of this year, it was back to going very high. Dr. Goodman told me it is because I have the hyperadrenergic form of POTS. (Up until I went to see him and had a bunch of tests performed, I didn't realize that there were so many forms/factors of POTS!)

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Sorry to throw more confusion into the mix... but I'm wondering why your doc felt it was unnecessary to do the second part of the test? In my limited experience, that's when they inject (via the IV) a synthetic adrenaline and then continue the tilt procedure.

I had two TTTs. In the first, like you, I was told the results were "perfectly normal" (despite the fact that my initial supine BP was something like 79/45). They didn't do the adrenaline portion of the test. However, during a subsequent TTT at Johns Hopkins they did do the adrenaline administration. My BP and HR plummeted - I don't think I completely passed out but was pretty close. Based on that, I was told I don't have POTS, but I do have neurally mediated hypotension (NMH), which you also see referred to as neurocardiogenic syncope. It's another form of dysautonomia. My HR never increases significantly (as it would in POTS); instead, in response to certain stressors, my HR and BP drop inappropriately. I'm not sure why they felt your age meant you shouldn't be tested for this - the doctor at Johns Hopkins who was the expert on NMH is actually a pediatric cardiologist - Dr. Peter Rowe.

It doesn't provide me with a huge number of answers, but I do find it helpful to at least have a starting point, instead of the frustration of yet another test that says I'm "perfectly normal!" I hope you can find some answers.

I thought that was odd too. He said that only really old people need the second part. I've tried to find anything about this on the internet and never saw that as a criteria. I know that lately I've been developing bad reactions to medicines so maybe he just didn't want to deal with it if I had a reaction? We've decided to specifically ask him about possible POTS at our next appointment. My husband and I found an neurologist that specializes in autonomic disorders at MUSC down here but you can only get in to see her with a doctor referral. Maybe I'll just ask for the referral.

I know that I really don't want to do a TTT again anytime soon! I have been suffering some major nausea and vomiting since then. The day after was particularly bad.

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