I Had My Ttt Today...everything Looked Normal. :\

[mama_destiny]

Today I had my TTT with a local Cardo. They got me all hooked up and had me lay down, took my initial readings within 20secs of laying down and raised me up( I mentioned after the test, that I thought they were supposed to get my "resting" HR laying down, she said that wasn't how the POTS TTT was done, I guess I was confused about how it was done?) My starting HR was 108, which is much higher than it normally is when I am "resting", at home I get 64-75 BPM laying for about 3 mins. My heart rate was about 124 BPM the entire time I was tilted up. I don't know what my BP was, as they never said, they just said everything looked normal for my age(27), and that my blood pressure was keeping up with my HR as needed. I couldn't help but tear up once I was told it was "normal". I wanted to know what was causing my symptoms. I am just back to the starting point basically now, ugh.

I go back for a follow up in 2wks, but I'm not even sure it's worth it. He's going to tell me what the nurse and Dr.'s assistant already told me - everything looked normal. They did tell me that he may want to do it again, or try something else? I feel pretty hopeless about all that though.

I was also told by the RN that a couple of my symptoms were not POTS symptoms(brain fog, and dizziness/feeling like I just got off a merry go round basically, or like I had drank too much alcohol), but possibly inner ear/neurological. I have already had a Brain MRI, all was normal.

[anna]

Not sure where you had your TTT but the official HUTT should be done as shows below, plus one of mine and my children's most annoying symptoms is brain fog.

What happens during the test?

First you will lie flat on your back. Your initial (baseline) blood pressure and EKG data will be recorded as you lie quietly before the test begins. After resting for 15 minutes, the test will be started.

Your blood pressure and heart rate will be constantly monitored throughout the test. Your blood pressure is measured on a minute-by-minute basis, and your heart rate is displayed continuously on the monitor and recorded every minute. The data is recorded and stored in a computer.

The motorized table is controlled by a nurse or technician and will be tilted to different angles during the test. The table will be tilted at several angles in sequence (30 degrees for 2 minutes, then 45 degrees for 2 minutes, then 70 degrees for up to 45 minutes). You will always be tilted upright so your head is above your feet; you will never be tilted upside-down.

When the table is titled at 30 and 45 degrees, you will feel as if you are lying on a steep hill. When it is tilted at 70 degrees, you will be in an upright position and your feet will be supported by the footboard at the end of the table.

Qualified medical personnel will be present during the entire test.

http://my.clevelandclinic.org/heart/services/tests/electrocard/hut.aspx

[issie]

Isn't any pulse rate above 120 (standing and no exercise) considered to put you in the POTS catagory?

Issie

[bellgirl]

Insist that they repeat the test!! All those symptoms they said was NOT POTS, were what I had at my worst, the dizziness, vertigo, brain fog, etc....I'm sorry, but that nurse only has to look up POTS on the internet and find that out...how frustrating!! It's the resting, lying down verses tilting, and there should be at least a 30 beat difference in the heart rate. Did they do a stress test, echo, EKG or anything else?

[mama_destiny]

II thought for SURE I wold get diagnosed today, especially when I seen my BPM range. At one point the Dr.'s assistant came and checked my pupils, is that a routine thing done during a TTT?

My husband was sympathetic about it all (for once when it comes to "POTS") when I came home and bursted into tears about it. He said the same thing, I should go back and demand that they redo the test. BUT I don't know that a big-headed Cardio is going to want to listen to little ol' me, ya know? I heard about a good cardio to go to an hr and a half away from a member here. I think I may go ahead and just cancel my appt. with this Dr. and go to the one in another City, where they know what they are doing. I don't want to waste any more times with this one, if I apparently know more about POTS than they do!

Man I am super bummed about this, but I guess I have to keep pushing for answers, like the rest of you have! I'm glad to have found this place.

[HopeSprings]

Isn't any pulse rate above 120 (standing and no exercise) considered to put you in the POTS catagory?

My thoughts exactly. Plus, it doesn't sound like your heart had a chance to recover from being upright if they took your resting heartrate only 20 seconds after laying down. I don't think you can rely on these results. From what I've read POTS is either a 30 beat increase or anything over 120.

[issie]

Thing is, will your insurance pay for another TTT this soon. I'd have them re-do it too and insist on the lying down part of it.

Issie

[Christy_D]

Ditto to the above, they should have kept you lying down for much longer to get an accurate resting heart rate. My son's pediatrician does the 'Poor mans ttt' and never has him lie down for more than a minute or two before she begins. Then she tells me his hr/bp were good and not much variation. Well, Duh..she does it wrong. Since she is not his treating physcian for POTS I don't step on her toes about it.

Christy

[sarahm]

How frustrating. That certainly doesn't sound normal to me. It might be worth giving the Dr. a chance though. You only got to hear the nurse and Dr. assistant opinion. I have had multiple TTT's and one was kind of boarderline and the Dr. assistant was very hesitant to call it POTS. But when I talked to the Dr. he said it was POTS right away. I have never had them check my pupils during the test by the way. But they have checked them when I am off the test.

[issie]

I looked up to see why they maybe checked your pupils. It seems the sympathetic system causes dilation and parasymptathtic constirction of the pupils. Here'a an article on some of the findings and symptoms of POTS. (The link didn't work - it is under Dynakids. org on POTS Physical Therapy Article.)

Issie

[HopeSprings]

I was also told by the RN that a couple of my symptoms were not POTS symptoms(brain fog, and dizziness/feeling like I just got off a merry go round basically, or like I had drank too much alcohol), but possibly inner ear/neurological.

Just noticed this portion of your post. This is how I feel too - slightly drunk. I think I spent more time with ear Dr's than any other type. I've had extensive ear/inner ear testing and really got no conclusive answers. Doesn't seem like it should be a POTS symptom, but then so many of us with POTS have this symptom - it ties in somehow.

[tachyfor50years]

Next time, take a print out from that link that anna posted on here! so that way, they will do it the right way.

Do you remember when I told you that I have given up on all the doctors in our city? (we both live in the same city).

The other day, I gave that doctor whom you are talking about, a call and they told me that he had gone through some (POTS) training but they don't have any equipment or special labs to run the tests related to Dysautonomia.

I am just like you, so desprate for a good doctor.

Today, I called Dr. Safwan Jaradeh's office which is in Stanford, California (I don't live there), his nurse was so nice and honest, she told me that he is knowlegable about POTS but he is still working on establishing the lab and all the other equipments. I think he will be my future POTS Dr since my insurance does not cover for Mayo or Vanderbilt.

Good luck.

[Anoj]

is it possible for you to go somewhere else? i know that would be a PITA, but it sounds like you might need a second opinion? i don't know what's available in your area health-care wise or if your insurance would cover it, but sometimes fooling with people who aren't knowledgeable is a waste of time. whatever you end up doing, good luck!

[mama_destiny]

I called them and left a message letting them know what the HUTT site says, they called back told me that it was done under THEIR standards, and they can assure it was done correctly. She said everyone does TTT's slightly differently, some do 15mins. laying flat, however they do not. She said there is no certain way it has to be done. She told me to ask the Dr. more about it at my next appt.

It is time for me to move on from them, already. I just need to figure out how it is done at the Dr. I am thinking of going to, first.

Unfortunately, traveling to another state isn't an option for me, with having 4 kiddos to care for.

[Chaos]

It says in every publication that I've read that the diagnostic criteria for POTS is a 30 BPM increase OR A HR OVER 120 at ANY time in the first 10 minutes of HUTT that qualifies as POTS. So seems they missed that right there.

I would really move on. If there is ANY way to go to a different city to a specialist who really knows the condition it will save you time, money and a lot of emotional distress in the long run. I finally gave up on seeing any local docs and now my husband drives me 7 hours each way every three months to a specialist who manages my care. I spent way too much money and tears over the local docs who didn't know how to treat me.

I have 4 kids myself so I understand what a challenge it is, but if you aren't in the best health you can be, then you're not going to be as much help to them as you'd like either. If there is any way to farm them out to family or friends for a little while it might be worth it to go to one of the autonomic centers for testing.

Sorry you're having such a rough time with this. There is nothing more frustrating than dealing with docs who won't listen to you. Save your money and your sanity and move on!

Good luck!

[CarrieJessica]

go see him again with a print out of POTS info, see what he says. you can always get a second opinion. I am no doc but it sounds like you meet the diagnostic criteria. My cardio said he knew all about autonomic dysfunction... he doesn't...

[LindaJoy]

"There is no certain way it has to be done"??? Well, only the right way, I guess.

I've had tilts done at several different institutions over the years. I've only failed one. Some of them were jokes how they did them. Yes, there are ways to do tilts that are the "right way," and there are ways that are not right and can give mixed results.

Just my two cents, but brain fog is a major symptom for me. I feel drunk sometimes, and yes, very dizzy. I don't know about the eye thing, but Issie gave a site that addresses that.

I know it's a bother, but going a bit of a distance to get diagnosed correctly seems like what you may have to do. I'm so sorry you had to experience this. Have you talked with the doctor yet? A long shot, but maybe he will come back with something different from what you're being told so far. If not, then yes, you'll need to go elsewhere.

I've passed every tilt I've ever had done, like I said, except one, and I'm currently wearing a Clonidine patch to try and regulate my nervous systems because they don't work together very well. I have Dysautonomia, and I pass tilts. Don't think that a passed tilt doesn't mean you're okay, hon. You obviously have things going on. Sometimes, we have to look a bit to find the answers. Don't get discouraged. Just move forward.

Let us know how it goes.

Lindajoy

[mama_destiny]

So the nurse who was actually in the room doing the test with the Dr. Assistant, called me as well! She was very nice, and talked to me for a good 15mins. She said that although I didn't meet the 30 BPM increase, I did (obviously) meet the 120 BPM in the first 10 mins., and it was that way the entire test. She said if it were up to her, she would definitely give me the diagnosis for POTS, and has no doubt that's what going on with me, since I also have the symptoms. She said that the Dr. just might go ahead a diagnose POTS from what was shown during the TTT, and she thinks I should go ahead and keep that appt. to see what he says. Of course she would say that, but she did seem personal at the same time.

I think I will keep that appt, just to see what happens, and I will also make an appt. with another Dr. in Denver, if I get "lucky" with the local, I can always cancel the other, since it will be scheduled pretty far out anyhow.

[sue1234]

Even if they don't want to give the POTS label, it's crazy how doctors might think us standing up with a heart rate of 120 is even remotely "normal".

[AmberK]

mama_destiny I am so sorry for what you're going through but at the same time it's comforting to know that someone else is going through the same, so I hope that you get comfort from my situation too, and that it makes you feel less alone with it. I had my TTT a couple of weeks ago and am facing exactly the same situation (I wrote about it on the forum here: http://forums.dinet.org/index.php?/topic/20414-tilt-table-test/ The only difference, is that I haven't been told any of my readings, just been told that my HR was high throughout. Like you, I didn't have a resting heart rate taken. I'm still deciding what to do about mine, but whatever else I do I'm pretty sure I will voice my concerns to my doctor. I have the same reluctance as you that why would they listen to me when they are the 'experts'.

Much of the information about POTS and the tilt table procedures online seem to be American sites, as does this forum. I live in the UK and feel that if I take in any information from American sites I will simply be told that it's different in the UK. I know this would be rubbish though, as surely if they are diagnosing people with the same illness, the test should be the same?!

I'm very reluctant to go through the awful experience of the TTT again, but just don't think that I can let this go, when their incompetence seems glaringly obvious.

Thinking of you, and I hope that my situation helps you feel less alone with this.

[Anoj]

So the nurse who was actually in the room doing the test with the Dr. Assistant, called me as well! She was very nice, and talked to me for a good 15mins. She said that although I didn't meet the 30 BPM increase, I did (obviously) meet the 120 BPM in the first 10 mins., and it was that way the entire test. She said if it were up to her, she would definitely give me the diagnosis for POTS, and has no doubt that's what going on with me, since I also have the symptoms. She said that the Dr. just might go ahead a diagnose POTS from what was shown during the TTT, and she thinks I should go ahead and keep that appt. to see what he says. Of course she would say that, but she did seem personal at the same time.

I think I will keep that appt, just to see what happens, and I will also make an appt. with another Dr. in Denver, if I get "lucky" with the local, I can always cancel the other, since it will be scheduled pretty far out anyhow.

sounds like you have a good plan in place. sometimes it takes that to help us relax. one of the biggest challenges to me during this whole process has been determining my next move. it's not as easy as it seems, and 1 million variables can go through your head. if this, then that. if that, then this. on and on.

i feel like you need to be very kind to yourself! just remember that you're doing the best you can. in my personal experience, this journey can be long. it took me almost 2 years to get the answers i needed, and even those still are not complete. i still wonder if i will end up at a place like vanderbilt one of these days, but until then i'm just working with what i got.

i remember people telling me to just go to vandy & get it over with (with good intention). i wasn't ready for the upheaval then. still not. you'll do what you need to do when the time is right. you might get sick and tired of being sick and tired at some point and go somewhere else eventually. or, maybe your symptoms will improve and you won't need it. wouldn't that be nice!

hang in there!

[hholmes13]

Even if they don't want to give the POTS label, it's crazy how doctors might think us standing up with a heart rate of 120 is even remotely "normal".

My thoughts exactly Sue1234!! I'd like to see how they would feel if their bodies did that!

[CharmedLinz]

TTT's are the Pits. I've had 1 and they will have to pay me big bucks to get on another.

However it did cost me the POTS diagnosis for a year and a half.

My Local cardio doesn't really believe in POTS unless you always have a heart rate over 80 or 90 and always an increase of over 30 bpm instantly.

Literally his poor man's tilt at every appointment is a joke.

Sit, take it

stand and instantly take it

then sit and do it again.

never lie down.

my bp is always normal or high at the doctors......... gee i wonder why, because they make me a nervous wreck.

His staff put an EKG on me at every appt for 10 seconds after 5 minutes of attachig all the wires. 10 seconds will show what exactly??

My TTT lying down for 15 mintues my HR was 66

At 13 minutes in I started having major symptoms, they started at 7 minutes.

At 15 minutes they had to lay me down just as I started to black totally out.

My HR was only 115 from 66 but my BP had dropped to 40/17

as soon as they dropped me my HR plumeted to 50

That got me a dx of NCS and some type of autonomic dysfuction. Traveled out of state to a specialist who agreed.

A year later I did a month long halter monitor, got results saying things were normal.

Before going back out of state for a follow up I requested all the readings from the company that recorded the monitor.

HR was anywhere from 40-135 with brady and tachy and arrythmias.

My local cardio said this was normal.

My Specialist took one look said he didn't care what my local beleives, I had POTS, not typical POTS but pots. I go Brady almost every night and sometimes during the day and 135 for nothing more than a stroll here and there is NOT normal.

My PCP does great orthostatics at every appt and has recorded my HR as low as 32 and at home its been as high as 167

I finally have a small fiber neuropathy diagnosis which seems to have gotten my local cardio off my back for the time being. now he's on the bandwagon of, well that's whats causing all the problems.

Honestly I like him and he's the best one here, though he could be better. But I zip it because if I ever have a heart attack I would trust him more than some others around here.

Hang in there. sorry for the bad grammar and typos i'm beat.