Pots On Ttt But Do Not Understand Results???

[louloutinks]

Hi all. I finally got my results of 60 degree tilt and have pits and vasodepressor variant syncope.

I was very surprised at the low responses of my heart rate on the TTT and it only went up to 126. There was no orthostatic intolerance which I was also surprised at because at home I either get very high or very low readings. They did note BP of 131/87 on standing after 3 mins which they said could be an alarm response but this also happens regularly at home and the readings are often higher than that. My BP dropped to 51/31 just as I felt faint which was a few minutes after they did venupuncture.

The valsalva BP profile was normal , HR resting 71, phase2 105, phase4 67bpm ......surely how can i have pots esp when the catecholamines which were taken as soon as I got off the TTT were normal. Noradrenaline sup 228, stand 317. Adrenaline sup 27, stand 41.

There was not much of a change (approx 10mg>) during cutaneous cold, hyperventilation etc tests.

The 24 BP monitor showed higher HR's which are more like what usually happens with me on a day to day basis. Tachycardia in am on standing 135 and 173 after stairs. 159 after getting in car etc. BP was 79/46 whilst asleep.

I have been given florinef 0.15 daily but they would not give me beta blockers to lower my heart rate even though they know how high it goes. I have chiari malformation and for the 5 days I have had flirinef my head is killing me .

Why does the TTT give different readings to real life situations. I have so many high bps on standing but they said its an alarm response even after standing for 9 mins so that does not make sense either.

Anyone that can enlighten me would be great x

[Lethargic Smiles]

From what I understand, for a healthy person, the tilt table would hardly effect their pulse/blood pressure for long at all because the body is laying at an angle and supported by the table. So, in short, it's less stressful on the body than standing in "real" life. I have more dramatic heart rate changes doing a poor mans TTT than I do on the real deal. Someone correct me if I'm wrong. I just wanted to answer with what I've read since no one has responded.

That is a VERY low blood pressure you got when you feel faint. This may be why they don't want to give beta blockers. Beta blockers drop blood pressure. I couldn't take them if it weren't from Midodrine, but my blood pressure doesn't tend to go below the 80s on top when I am experiencing hypotension, so my case isn't nearly as severe.

[Guest maia]

Maybe because they only went to 60 degrees and when we stand, we stand at 90 degrees? My tilts were all done to 90 degrees and on the way down I start to feel better. I agree about the blood pressure and beta blockers and I dont take them for that reason. My normal bp is low enough.

[AshleyPooh]

My tilt table test is on monday, so reading this is certainly educational. I know on some days, my symptoms are worse, and some days almost nonexistent. I'm afraid my symptoms will not be dramatic on monday, but we'll see I suppose. I know if they inject me with adrenaline we'll get to see fireworks, but besides that Im not too sure how I'll react. My bp readings at home tend to be pretty low, although I have days in a row where my bp seems to go up to an almost normal level.

I wish i could invite them over to check my blood pressure/ HR when I'm standing outside watching my dogs play. My pulse goes up to at least 120 ( i only ever check after I go inside, so the cool air might lower it to that and it's higher outside).

I don't think I'm getting a valsalva bp profile, unless that just comes standard with the TTT? I don't know much about what things they will check, just that I'll be moved around on the board and hope to get a response!

[Lethargic Smiles]

I've heard of the tilt being anywhere from 60 to 90 degrees depending on the center.

[AshleyPooh]

Has anyone with POTS ever failed a tilt test? I mean, have they ever had a test where their blood pressure was just fine that day? I just ask b/c some days I don't feel so bad, so I don't know if a negative tilt will be ' the end' of inquiry in this area for me. I still pretty much think it'll be positive though.

[Guest Alex]

Tinks,

as it was mentioned before, during the TTT you don't assume vertical position on your own as you are strapped to the table. You don't use your leg muscles in the same way you would "naturally" so to say. This may account for the differences you noticed between the TTT and say a normal POTS day at home.

Also, the florinef headaches are pretty nasty (I am hoping your dr knows about your Chiari). If you feel like florinef is making you worse, perhaps you can ask your dr for some alternative treatment or consider looking into licorice (the natural version of florinef)?!

Ashley,

I had a negative TTT - one that didn't show POTS anymore a day after a really bad tachy episode (220 bpm). So, POTS tends to be unpredictable and it is entirely possible not to have your usual BP fluctuations during the test. Still, the criteria for POTS is an increase in HR of 30 + bpm or a sustained HR of 120+ bpm regardless of what your BP is. The fact that your BP drops when standing may have to do with a condition associated with POTS called neurocardiogenic syncope NCS. POTS in itself though can present with all sorts of BP variations or with no BP variations when going from lying down to standing.

Fwiw I fainted during my first TTT and I don't normally faint. I was diagnosed with POTS and NCS back then but since I don't fit the criteria for NCS, my diagnosis has been changed to just POTS.

Best of luck with your test on Monday and keep us posted.

Alex

[AshleyPooh]

I'm sure if i react to the TTT tomorrow the way i am today, I have no worries. Went from 90/66 sitting to 120/94 standing

lately, my heartbeat has been resting at 90+. it's driving me crazy because normally isn't that high.

This past week, the sonogram guy said that he could tell my bp was normally low b/c my heart walls looked thin, the only thing he could see on the sonogram that was wrong with my heart. He says the TTT will help determine that though and help me get treatment. Hope so! I desperately need to live again!