Another Ttt Question

[jump]

Hey all,

I have a question about the isuprel injections given as part of the TTT. If a person without POTS gets the injection during a TTT, does their heart rate stay the same? Why do they give the injection? What are they looking for?

Thanks,

jump

[Ernie]

Hi,

The quantity of isuprel they give generally does not affect a normal person. With us it causes vasodilation and our body cannot compensate. So it accentuates your symptoms and may make you faint.

It can sometimes give a false positive so some doctors do not use it and prefer to do a TTT that will last 45 to 60 minutes.

[EarthMother]

I've refused the injection on both my TTTs. It didn't make anyone happy ... but I told them "Look, I'm symptomatic. Just prop me up there and you'll see what you need to see." I really didn't want to go through anything worse than I had to in order for them to gain whatever it is they needed to see to confirm the diagnosis. And in both cases they saw what they whatever it was they wanted and said it wasn't necessary to use the meds.

[flop]

I had Isoprenaline given to me during my electrophysiology study, the reason it was used in the EP study was to make my heart beat faster and more forcefully than normal to try to unmask any arrhythmias (made me feel pretty rough but didn't show any rhythm problems).

I've never been given (or suggested) isoprenaline during a TTT. In the UK if they want to lower your BP during a TTT they usually give 2 sprays of GTN under your tongue to cause vasodilatation (had this in my first TTT but only after 45 mins of head-up-tilt, had already met the criteria for POTS easily before GTN spray).

Flop

[jump]

Thanks!!!

In my TTT, my pulse went from 60 lying down to 90 tilted up, before the isuprel injection (this took about two minutes). Then they gave me the injection and my hr went to 140, and they stopped the test because they said my heart rate was too high. But they also said the test was negative and that I do not have POTS; I asked if a hr of 140 was typical for the test and they said "well, that was just because we gave you the isuprel." But, the initial jump from 6 to 90 would have been cause for diagnosis anyway, right? And the jump from 90 to 140 is maybe indicative of abnormality too?

I had this particular TTT almost a year ago when I was much less symptomatic; all the cardiologists say it was negative (that I do not have POTS and my primary care says it was positive. To clear things up, she wanted me to be tested again (now that my symptoms are worse); but the test is REALLY expensive for me to have ($600 out of pocket), plus it made me feel like ****. So if I can explain to her that the test really was abnormal even though I didn't faint (they're very fixated on the fainting aspect of the test -- but I was only tilted up for about 8 minutes, and I don't faint nearly as often or as quickly as others with this disorder do) then I would save a good bit of cash....

Thanks for the info, now that I know the isuprel isn't supposed to cause much of a change in normal people I may be able to make my argument stronger...

jump

[EarthMother]

Sometimes I've read the definition as 30 beats or more AND over 100 BPM or even 120 BPM for a POTS diagnosis. However they also say within 10 minutes of standing. Its ludicrous to pop you up and say ... look its only X and then bring you back down without keeping you up for a while. The nurses did recline and standing BP/Pulse on me while I was in the hospital last June a few times this way -- the pop-tart method LOL-- and concluded I didn't have POTS after all. Now had they taken my pulse when the phys-ed guy tried to walk me down the hall they would have seen a completely different picture. But of course they never did. Nor could they understand why I didn't want to get up and cart my IV trolly across the room to go to the bathroom. Some people just don't get it.

Personally I wouldn't pay for another TTT unless you can see at home with your BP or stop watch that you are going 30 or more beats higher AND over 110 or so on a regular basis.

[Tessa]

I read somewhere that according to Dr. Grubb there is another kind of POTS that happens gradually over the time of being standing...Bp lowers and heart rate increases... But not within 10 minutes after being tilted... The time can be longer...does not necessarily to be 10 minutes or when tilted.

I would surf the net and investigate about all the possible POTS

Love,

Tessa

[mkoven]

I had my ttt at Cleveland and am glad I did. In Champaign, they are also fixated on fainting, not heart rate. My results were positive for pots, but less that they might normally be, as I was still on midodrine and florinef. I thik I went from 65 to 110 within ten minutes, and my bp gradually droppped 25 points. Off meds, who knows. and at home, it's usually my bp that's the first to drop, before my pulse goes up. I think some docs are also reluctant to understand how variable we are day-to-day-- that one's ttt is a snapshot into how you are doing that day. My guess is that I was more pots than oh at the ttt because I had enough adrenaline to slow down the bp drop, and my hr had to compensate.

Even when I explain to docs that I'm usually more hypotensive that tachycardic, they still want to go by the ttt result. and then I ask them to do the poor man's tilt in their office, and they see what I mean.

People fixate excessively on the tests. I've heard that the american college of Cardiology has complained that ttt's are not standardized.

[jump]

So true!!!!

I could kind of tell right away that the people giving me my TTT didn't really know exactly what they were doing. It's not a procedure that's done very often here I guess.

I do have plenty of recorded tachycardias in the 120-200 range (from about 60 sitting) from my holter monitor test and from other various tests. And I've had countless positive "poor man's" TTTs. It just seems like the cardio department feels like if I didn't faint on the actual table on that particular afternoon then I can't have dysautonomia. Siigh.

At least my PCP believes POTS is a clinical diagnosis. She is 100% sure I have POTS and other dysaut problems, and she's the one I'm going to be working with the most, so it doesn't really matter I guess.

[flop]

Jump, the important thing is that your PCP believes you have POTS and is treating you for POTS.

TTT were invented / discovered as a way of inducing fainting in patients who were susceptible to fainting. When trying to diagnose the cause for fainting a "positive TTT" means that the patient fainted (they are looking for sudden low BP, severe bradycardia or even the heart pausing for several seconds). POTS was described as "an unusual but reproducible response to TTT". Only 30% of people with POTS ever faint so we can't possibly all faint during our TTTs!! Sounds like the people doing your TTT only normally do them to trigger fainting and not to look for other abnormalities of the autonomic system like POTS.

To be diagnosed with POTS your HR should increase by 30/min or to more than 120/min within 10mins of tilt. But some drs recognise that a few people have a variation of POTS that takes more than 10 mins for the HR to go up.

I have definite POTS (agreed by 2 cardiologists and a neurologist) HR 65 to 170 on my first TTT. I have fainted way over 500 times in normal everyday life. I have had 5 or 6 TTT but I have never fainted during a TTT.

Flop

[juliegee]

My son fainted at 35 mins, and his HR didn't go crazy high- 150 until right before he fainted. At Johns Hopkins, he ws DXed with NMH (used interchangeably with NCS) not POTS.

Jump, your TTT clearly showed POTS- a 30 bpm rise in 2 minutes, plus a huge clinical history and a myriad of symptoms. Don't put yourself through this again with nothing to gain.

Julie

[valliali]

i feel like the black sheep of the POTS family. my heart rate did not increase, and my blood pressure did not drop, during my TTT. sometimes it does, probably like one day every couple of weeks i'll have a day where my heart rate increases upon standing, or i'll feel really really dizzy upon standing.

the reason i was diagnosed with pots was because after the isuprel injection, after i had been upright for 20 minutes, and after i was lowered, my heart rate suddenly went from 110bpm (where they were keeping it at on the isuprel) to 180bpm. again, this was after the whole test, and i was lowered down. my cardio came over to tell me that i was all done and negative for everything and wham!

this episode happens fairly often to me. my cardio told me it was a sinus tachycardia, which he said was incredibly unusual because he had never seen it happen. it seems that it happens to me after my heart rate has been up (like from the isuprel) and is lowering. then it just shoots up and becomes really really foreceful.

so i was told that i have POTS. but it seems that most people on these forums had an increase in heart rate during the ttt. did anyone here not, and then later find out they have pots? did anyone else have this reaction on the ttt? i wonder if it wasn't an svt that i had, which i know many pots patients have, so would this reaction to the isuprel be something that could induce a svt?

thanks all!

[jump]

valliali,

For years I only had isolated incidents of POTS symptoms. One day I might be perfectly fine and the next my hr might shoot up from 50 to 150 while standing in line or something. I think if I had been tested during those years I could have easily had the TTT on a "fine" day and not had any reaction. Especially since my hospital only does TTT's in the afternoons, which tends to be when my symptoms are the least.

Now I think pretty much every single time you stand me up I have at least a 30 bmp increase; on beta-blockers, the tachys aren't always true tachys because my starting hr is typically very low. (For example, I might go from 50 bpm sitting to 90 standing; 90 isn't tachycardia, but it is a 40 bmp jump). But, this consistency in symptoms took a long time to reach... probably about three years of gradually getting worse.

Is it possible that your resting hr is quite low? 110 could be considered pretty high if you're starting out at 50, and you might not notice. Also, do you find your symptoms changing at all? Have you had any tests besides the TTT that might shed some light on a *pattern* of symptoms, instead of just that one particular day?

[valliali]

thanks, jump. what's interesting to me though, is that i don't really feel like my pots symptoms on a whole are ever not that bad or i'm in a "good" stage. when i took the ttt, i had about 100 really nasty symptoms. just not the heart rate upon standing. it's one thing if i'm having a day where i just overall feel okay. but when i feel like all kinds of autonomic dysfunction symptoms are acting up but not the number one typical "pots" reaction, i do have doubts.

and my heart rate is definitely not low. at rest, it's around 100. well, now, i take 50mg of toprol and it's around 85-90. when i exert myself even a little, it shoots up to about 130. when i try to exercise, even lightly, easily in the 200s. and no, i was not on the toprol when i had the ttt. i was prescribed it because of the wierd reaction i had. and i never had the heart rate increase upon standing before the beta blockers. the few times it has happened have been after them.

it just seems strange to me. i read all these studies and other people's stories, and it seems unusual to have all the other symptoms of POTS except for the heart rate increase upon standing! i am going to see a POTS specialist in a couple of weeks, finally!! so hopefully i'll get some answers!

[Heiferly]

When you say you don't have the rise in heart rate upon standing, are you comparing only to sitting? I ask because when I first got sick I had a normal resting heart rate when sitting. But I have gotten progressively worse over the past two years, and now I rarely have a resting heart rate when sitting up. My heart rate is normal when I lie down (about 65) but sitting up bumps it up to about 90 and I start getting some orthostatic symptoms like nausea and a little dizziness. Standing bumps my heart rate instantly to 110, and it just goes up from there depending on how long I stand and if I try to do something active. So, the short of it is that I don't consider my sitting heart rate as my "resting heart rate" these days because I know I'm having orthostatic intolerance symptoms and have already had an increase of 25 bpm by the time I'm sitting fully upright. Do you take your heart rate lying down compared to standing to see if the difference is between those two?

[valliali]

hi heifefly -

i really don't have a change in heart rate upon postural changes from any position, hardly ever at all. from lying to sitting, sitting to standing or from lying to standing. really not much of a change. like i said, some days i will. maybe once a month or two my heart will race upon standing from lying down or sitting, occasionally. when this happens, i also have a huge surge of anxiety. but it is honestly the least of my symptoms. my most concerning is the racing heart i experience upon minimal exertion. and sudden surges where my heart races to high end, pounds the hardest i could imagine it being able to pound without breaking my ribcage, and creates huge huge huge surges of panic. my doc diagnosed me with pots because one of these episodes happened at the end of my ttt, and he said it was sinus tachycardia. he said he has never seen or heard of that reaction before. these episodes do tend to happen when my heart rate was high for a period of time, like with exertion or excitement, and is coming down. my doc suggested that my parasympathetic nervous system wasn't working properly, but whooooo knows. i do find it a bit odd however that postural changes do hardly ever affect my heart rate. my tilt table test showed pretty much no change in hr or bp. i took the ttt around the time i was at my worst, about a year ago. i have come a long way since then, but never really had the postural changes.

[Heiferly]

Is there any chance you could get evaluated by one of the big-time autonomic experts--Mayo or Grubb or something? It just seems like something autonomic but something different than POTS is going on . . . might take a real autonomic "guru" to pin it down?

[valliali]

i am going to see a doctor who is educated about pots at stanford in two weeks. i have been waiting forever, so hopefully this provides some clues. i am not sure she sees a lot of pots patients though, and i have heard that she typically sends them right over to mayo. i cannot afford that now, or probably any time soon, so my hope is that she either says, yes you seem to have pots, or no and we need to figure out what it is.

i know that there are a lot of things that can cause ANS problems. i have no doubt i have an autonomic dysfunction, but i don't seem to fit into any of the "types." i was also worried about my pots diagnoses because i didn't have the heart rate upon standing. my diagnosis was from a cardio who has never had a pots patient who wrote, "the patient has some kind of autonomic dysfunction, probably some kind of POTS since it is the most common." yea, that is a really confident diagnosis.

but i just can't really find any other explanation for autonomic dysfunction. if it's not pots, then what? i don't really fit into any of the other categories. so i just feel like i have no idea what is going on.