Ugh, Had Ttt Today

[Angelika_23]

Hello All,

I had my tilt table test today. My results were negative. The doctor only held my afternoon meds today, so he says that my prior medication may have skewed the results.

The odd thing is, AFTER the test, I was walking out of the testing room and I fainted and hit my head and shoulder on the wall. What is up with that? Negative test results, then I faint AFTER the test?

They sent me to the ER. I did not want to go, but felt so bad I didn't argue too much. I sat in the ER for six hours. I got a head CT, a finger stick and an EKG. They did not give me fluids. (I hadn't had anything to eat or drink since dinner the night before, so I was pretty dehydrated). They released me and told me that I needed to call the neurologist in the morning.

My husband thinks they sent me to the ER because I hit my head on the wall and they were covering themselves, not because of the actual fainting.

I don't understand what is going on with me.

Angela

[Sophia3]

Gosh that STINKS!!!

You need to have meds out of your system from a couple days to a couple of weeks, DEPENDING on the meds. CRIMENY if they are going to put you thru that, they should NOT WANT TO SKEW the tests.

I am sorry you fainted afterwards with no monitoring to tell you what is going on.

SUCH frustration must be making you crazy.

I hope you see a doctor soon that understands what is going on.

MADDENING when TTT are done WITHOUT PROPER preparation.

[MightyMouse]

Angela, i looked at the meds you had listed--if you only skipped florinef for one dose, your test results would definitely not be accurate. Florinef takes a rather long time to leave your system. I was told by my doc to stop my florinef at least TWO WEEKS before my ttt.

Sorry you took a nose dive after the test. That couldn't have been fun.

Nina

[Ernie]

Hi,

I had a similar situation. I did a TTT for 12 minutes and my HR was 160. They layed me down and said that the TTT was negative. I fainted in the elevator going out of the hospital. They called a code blue and brought me to the ER. I got two bags of IVs.

[Angelika_23]

I am so frustrated! Just got my follow up call from the neuro's office, they wanted to know why I had the TTT. I told them because the EP Cardiologist ordered it. They also didn't understand why I am seeing an EP Cardiologist. I told them that the EP sent me to see them, that they were "sharing" me for a while. I had spoken with the neuro about this, she was fine with it, but she's out of town right now and I guess she didn't write it down. She had also known I was having the TTT yesterday. Guess she didn't write that down either.

I am shaky and slightly tachycardic still today. I asked the neuro people about work tomorrow. They said to talk to the ER. I told them the ER told me to talk to neuro. Then they tell me the neuro is out of the office... If I am feeling poorly tomorrow, and I'm sure I won't be back to what I was pre-tilt, then I have to have a note for my boss if I miss work.

I am starting to feel like we are never going to get this sorted out.

Angela

[pat57]

the sorting out is difficult to endure paitently- but you'll get there!

I share the others sentiment, what a shame that you had an "event" after the the test was finished.

[doctorguest]

I am not entirely certain that your tilt table test results were negative. Some cardiologists still believe that if you don't faint, you don't have a problem. I suggest you ask your cardiologist details about your heart rate and blood pressure measurements while supine and tilted, including immediately before the test was discontinued. The fact that you fainted right after the test and that you are symptomatic now suggest a disturbance of the autonomic nervous system.

[Angelika_23]

doctorguest,

I was told that my bp did not really fluctuate at all, and my HR stayed at about 120 most of the time while I was tilted. It went to 152 for a few seconds, but didn't stay there.

That's all the details I know.

The odd thing about me is, I have never fainted or collapsed unless I have been walking or climbing stairs. I told them that if they added a stairstepper to the test, I would give them the faint, and probably within seconds.

The neuro's office called back, they have ordered a sleep deprived EEG, an MRI of my brain, lots of labs, including a 3 hour fasting glucose test? and some x-rays. Sounds fun, huh?

Thanks everyone,

Angela

[doctorguest]

What was your heart rate before and after you were tilted? If it was 30 points less, this would qualify as POTS, if you also had symptoms during the tilt.

[Maxine]

I was on my meds when I had the test taken. I felt bad that I couldn't get off them, but my symptoms have been so bad due to all the OTHER stress I've been dealing with----and multiple health problems, I just couldn't do it.

My HR went up to 30bpm, but it took longer-----and they told me it was negative because the HR didn't go right back down when I was tilted back. When we got back to the hotel my heart rate would race just from moving after I had the test, and this was all on my beta blocker.

I never fainted, but was light headed. MY BP drops real low a lot----like 70s over something, but my heart rate doesn't compensate like it used to. Now I'm limited on how far I can walk----and sitting up is harder.

I'm thinking doctors have different opinions on tilt table results ----it sure sounds like you have ANS dysfunction to me.

Did they do any other ANS testing?

I had a sweat test also. But this test scared the you know what out of me. They guy doing the ANS testing said he never saw this happen to anyone. It's just a simple test where they attach these suction cups with wires, and acetylcholine is added, and they turn a current on-----(sorry, not explaining this well)---hopefully some of you know what I mean.

Anyway, I started twitching very badly inside my torso. I thought it was my heart, and the man doing the test said he was looking at the monitor, and it wasn't that. I felt like my insides were twitching all over the place----really strong. Never did get an answer on what that was all about.

Here's a link I added on ANS testing---and function----Kind of old, but what the heck. 1998

http://www.iasp-pain.org/AM/Template.cfm?S...;ContentID=2188

I'm sorry your getting the run around-----THIS IS BULL ROAR. How frustrating for you. I hope you get some help getting this sorted out, so your more functional. Keep on them, and don't give up. I'm still struggling to get the right medical care, but I'm getting some headway......

I have to get an MRI Monday, and I was telling the MRI techs about some of my health issues, and they said "do you have pots"----I said WOW, you know what POTS is?! Then they said, DO you see Dr. Grubb?" Hey, there's a little hope.......

Maxine :0)

[P SUDIK]

Angela, sorry for your bad experience!!!!!! I was dx with POTS 4yrs ago,after testing positive to 2 TTT,I did not faint either time,I have many near syncope episodes,but have never fainted. I don't beleive you have to faint to be dx with POTS.???????? Also my blood pressure does not go down but my heart rate goes way up. Take care Pat

[Angelika_23]

doctorguest,

I will have to get that information, I do not have it. I already put in a call to them, I wanted to let them know how I am feeling today, but they did not call me back. Seeing as it's 7:00 now, I doubt they will call me back today.

When/If they do call me back, I will get that information.

Thanks for the information, Maxine. I hope you get yours figured out, too.

Thanks,

Angela

[Sophia3]

Angelika

Ask for a copy of the detailed PRINT OUT of your TTT.

It will give minute by minute Bp and HR.

my HR leaped 55 within one minute and stayed there or fluctuated a bit...my Bp did not do much but when the tilted me back down, my HR DROPPED and I don't remember what my BP did.

When I saw Dr. Grubb years ago, even though my local doc is s godsend about autonomic problems, Grubb agreed I was a no brainer POTS just from one glance at my TTT results.

Hang in there. Also as others have said, some docs said TTT NEGATIVE or "inconclusive" unless you FAINT.

Even the bonehead doc who ATTENDED my TTT at CHRIST said it was 'inconclusive'. The cardio I saw in the office could not be there for it...so I went a WEEK thinking my TTT was "normal" and when I saw the cardio he said the test CONFIRMED ANS PROBLEMS. So even within the Cardiac group, there is IGNORANCE!

BE patient...no easy feat but you WILL FIND A DOC.

I can email you one name of endocrinologist and the cardiac doc I saw since you are in my area. PM me if interested. Endo is in Cherry Grove on Beechmont and the cardio doc is at Good Sam.

[Angelika_23]

Sophia3,

I have finally gotten hold of the nurse practitioner for the cardio and asked her for a copy of my results. She was rather reluctant to agree to it. (???) I also told her I am very symptomatic again. She says no one can do anything for me until the neuro tests are done. (sigh) I feel like an orphan caught between neuro and cardio. No one wants to take resonsibility for my care. Both of them actually stated that if I am feeling poorly, I should go to the ER. No way am I going to the ER. I am not feeling that poorly. It's not an emergency.

BTW, I had two veins give up while they were trying to take blood from me. They are spectacular in their bruising. One is actually a very dark purple, almost black. How long does it take the bruises to go away? I have one on each arm, and it probably looks like my husband abuses me.

Thanks,

Angela

[Tessa]

Hi Angelika_23

I just read about your TTT. Oh, my God. I am so sorry that you had such a bad experience.

I agree with others that you do not need to faint to confirm a kind of Dysautonomia. Furthermore, you fainted, although after the test thus unable to check your heart and bp reaction to it...

Of course, medication can alter the results.

I felt bad for the whole day of the TTT and had to increase drinking fluids... (You can read my experience by looking it up on the forum. I will try to find it for you)

I have not been able to get a full copy of the test, but just a summery of it, not minute by minute. Maybe I should, because this way you can always show it later to another specialist... I am glad that you asked for it. Do not be surprised for them to be reluctant, I think that it happens everywhere. They were extremely reluctant too when I asked for it.

Doctorguest?s comments have been most helpful, as always.

Take care,

I hope that you are feeling better now

Love,

Tessa

[Angelika_23]

Okay, here is the rundown on my TTT. My pcp gave me the results when I saw him today.

Baseline Bp: 145/90 Baseline HR: 101

"At start of tilt table, BP ranged between 145/91 - 172/78 to the recovery BP of 159/86." (what is a recovery BP?)

"HR ranged between 101 and 125, with an occasional increase to 154 that was just transient, associated with nausea and retching. Immediately after, symptoms ceased."

They concluded that this was a negative test for POTS, not sure if it was because of my meds, or if I don't have POTS at all. They are sending me to neurology for a lot of tests, then possibly I might have to "repeat card unit"(what is that?) "or have a life watch monitor" (what's that?) and possibly stop the Florinef and Midodrine if I appear to have a neurological component. (???)

If anyone understands any of this, please let me know.

Thanks,

Angela

[cardiactec]

hi there,

baseline HR and BP are what was recorded before they tilted you upright and your "recovery" BP generally is the BP post tilt (after they put you supine).......they use the term "recovery" to indicate how well tolerated your BP was to a simple stress of just standing....

generally if we see a transient HR response that increases and then tapers off, it usually happens within the first minute or so when someone first stands up -- this is a normal response for anyone when they stand, but not to a rate of 154. 154 BPM is a pretty fast HR, even if just transient...........blair grubb defines pots as an increase in HR to more than 30 BPM within the first 10 minutes of upright tilt OR to a HR of 120 - since you hit 125, this would be a POSITIVE tilt for POTS.............AND, since you were on meds, this may have altered the test, meaning that your HR response probably would have been higher if you had not been on meds....

i dont know what a "repeat card unit" is. I have never heard of it. as for "life watch monitor", life watch is a corporation with services that include holter monitoring, event monitoring, and pacer monitoring .....sounds like they want you on a monitor to see what your heart does when not on a tilt table, but just in "normal" daily life activity .........

how much florinef and midodrine were you on when you had your tilt? how come the doc didnt inform you to stop taking these meds since they can skew the results?

sounds like your test was positive to me, not sure why they are all it negative.;......defining pots, according to blair grubb and many many other docs is a rise in HR response from supine to stand of 30 BPM or more within the first ten minutes of standing OR a HR that reaches or exceeds 120 BPM accompanied with symptoms......

hope you get some answers,

Angela.