Is it possible to pass TTT with POTS?

[Gena]

I know for certain that when I was first started having severe POTS symptoms in July, (lasted for about 6-8 weeks), there is no way I could have passed a TTT. I know my blood pressure was dropping when I stood, was gettting extreme tachycardia, etc.

However, about two months later when i went to a clinic in Birmingham that specializes in dysautnomia, they did a TTT and the doctor said the results were mostly normal and she saw something only slightly out of whack (can't remember what she said it was now).

HOwever, she did dx me with POTS based on all of my other symptoms. When I went there I was really anxious so my heart rate pretty much stayed in the 80s (which is high for me, mine is normally low 50s). And because I was so anxious my bp, which normally runs really low, was up there as well. (By the time I went to the clinic I had already started taking licorice root, increased fluids and salt, for a couple of weeks before the appt. so my POTs symptoms had already begun to decrease by that time)

Also, I recently went to Mayo clinic and again was extremely anxious which kept my heart rate in the 80s and bp in high normal range all day. Again, I passed the TTT and other autonomic tests.

HOwever, I still continue to have POTS symptoms. The neurologist (Dr. Cheshire) at Mayo doesn't think I have POTS he says "because my tachycardia doesn't go away when I sit down"?? What I actually told him is that once the tachycardia starts from standing up after lying in bed all night that it may take up to several hours for my heart to slow down and find its own rhytm again. I was not impressed with his knowledge of POTS. I know there are so many nuances to POTS symptoms that don't exactly fit the medical textbook description, but I dont' think he understands those. I know we all get tachycardia at other times too, not just changing from sitting to standing. So I 'm not sure whether to believe this guy or not. He wanted to chalk it up to maybe hypvolemia. Anyway I will vent more about this experience later. wanted some input on whether you can have POTS but pass a TTT if you're in a "good phase" of POTS and your symptoms are less? Thanks.

[Star382000]

I don't know much but am learning more. I know that most of the tests the cardiologist did for me came up mostly normal, including a 24 hour halter moniter. They haven't done a TTT but I've heard them talk lots about it. Basically what I'm trying to get at, is with my limited knowledge, I think there is definatly possibilty for you to still have POTS. I would maybe see about trying to find another proffessional more experienced and knowledgable about POTS. I would mention my doc, but I go to Children's so I don't know what all the differences would be because of that I know I've totally lost and confused myself, I hope I've at least helped a little

[KarenLorrel]

Hi Gena,

I didn't 'pass' a tilt table test and that was my question to Dr. Grubb and Dr. Abdallah. Both said that it was possible to show a negative Tilt Table Test.

Dr. Grubb explain that it was important to watch how the BP changes DURING the tilted table test. (He explained it in much more detail but it was over my head).

I spoke with Dr. Abdallah after his 'talk' at the DYNAKIDS summer camp and asked him about the TTT and he said..."10-13% of the patients with POTS do not pass the Tilt Table Test."

Have you been checked for Ehlers-Danlos Syndrome, in addition, to the POTS?

Take care!!

Karen

[Ernie]

It can be possible to be diagnosed with POTS or NCS even if you have a negative TTT because you can be having a good day. Doctors rely on the medical history for diagnosing.

Ernie

[briarrose]

Gena

My own experience has been this

My POTS symptoms have evolved a lot over the past 3 years. In the beginning I would have tachycardia up to 160 bpm laying down, trying to sleep. I blew off my cardiologist the first time he told me that he thought I had POTS, I told him that it wasn't just tachycardia standing up (that's what I thought POTS was.)

I TOO experienced the slow decrease of tachycardia, meaning that once I was up to 160 bpm, it would take me hours to get back down to 60-80.

When they did your tilt table test did you get a copy of the results (I have found that they often don't tell you the whole story.)

Did they use Isoproternol during your TTT? That could induce your symptoms too.

I have also heard that some doctors don't know how to interpret the test.

OK that was my 2 cents.

steph

[Gena]

Kate - thanks for your input, my halter monitor results were normal too except for the tachycardia, but no abnormal sinus rhythms. Dr. Cheshire, the neuro at Mayo Clinic is listed in their guide as specialzing in auntonomic nervous system disorders, but I didn't get a good feeling that he REALLY understood the nuances of POTS>

Karen - I mentioned getting tested for Ehlers-Danlos Syndrome to Dr. Cheshire but he didn't seem to think it was worth investigating. He just pressed my fingers back to see how flexible they were. He said I'm flexible than most, but I was not "hyperflexible". Are there any blood or urine tests to specifically test for Ehlers-Danlos? They

Ernie - I kind of thought that was the case, that we could not show symptoms on a TTT if we were having a good day. I would love to take the doctors word for it and believe I dont' have POTS, but my heart and intuition tell me otherwise.

Biarrose - They did not give me Isoproternol for the TTT. Here are the results of my test

Supine reading - 112/95, pulse 62

after 1 minute at 70 degree tilt - 100/60, pulse 88

after 5 minutes - 99/59, pulse 77

after 3 minutes - 98/60 pulse 74

after 4 minutes - 98/65 pule 75

after 5 minutes - 100/68 pulse 77

At the bottom of the report it reads...Orthostatic hypotension was not detected. Heart rate response was normal. Patient complained of shortness of breath. Beat-tobeat blood pressure responses to the Vlaslava maneuver were normal.

I also had another autonomic test that measures sweat output and they had me blow into a tube several times really hard. Again, the report says all normal responses. Urine was tested for metaneprhine and catecholamine levels to rule out pheochromocytoma, and those levels were normal as well. Urine sodium was low normal and ANA was elevated (which I've known) and had low levels of protein in urine. EVERYTHING else was normal, but I don't feel normal? How is that possible?

[briarrose]

Hmmm

You had 5 minutes of your TTT but it should have went on for 30-60 minutes total. They normally tilt you for 30 minutes and if that is negative then they inject you with the Isoproternol and re-tilt you for an additional 30 minutes.

Didn't you say that you had started meds? That would be another reason to definitely give Isoproternol if you were being medicated and nothing happened. Especially if they didn't have you stop meds at least 3 days before test.

[Ernie]

I agree with Briarose. Your TTT should have been between 30-60 minutes. Only severe cases react within 5 minutes.

I guess that is why you were diagnosed with POTS anyways. He relied on your medical history.

Ernie

[Guest tearose]

Dear Gena,

My first TTT was in 1998 at Columbia Prs. Hosp. and it was not as "positive" as one done in 2003 at Mayo, MN however the 1998 test took about 40 minutes and they did not inject any drug. The Mayo dr. stopped the 2003 TTT after only about 10 minutes but that was because I started crashing, again I needed no drug.

There are so many variations of POTS and we ourselves can experience/show different symptoms over the course of a day that I am not surprised that the test results can vary. Also, when I first came down with my symptoms they were very different than they are now. The swings of high and low came less frequently at first. I am suggesting that you may want to wait six months and see if you have a pattern that you can report to the "best pots doctor" you have on your team and then repeat the tt test. That doesn't mean you shouldn't wait to treat you symptoms though. take care, tearose

[Gena]

Uggggh! I'm so frustrated. I went to Mayo Clinic because I thought they would be on top of things and know what tests to do and how to do them properly!! I wonder if they know theyre supposed to do a TTT for 30-60 mins? I wasn't on any meds so that wouldn't have affected the results. I had been doing licorice root, plenty of fluids and salt, so my symptoms were somewhat stabilized by the time I got to Mayo.

On a brighter note...The cardiologist at Mayo was wonderful. He was very in tune with what I was going through, had some good advice and very knowledgable about POTS. His name was Dr. Kusumoto and has treated several POTs patients in his practice in the Southwest before recently moving to Florida and joining Mayo clinic. However, since I had seen the neuro first, the cardiologist deferred the testing, results, evaluation etc. to Dr. Cheshire. Oh well, a lot of money spent for no good reason. I guess i"ll just continue to do what I'm doing. Dr. Kusomoto said as long as I was managing the symptoms naturally that I didn't need to be on meds. That's fine with me. If I get worse, I'll go back to Dr. Kusomot I guess.

[Merrill]

My tilt was 10 minutes total, and my hr went up 40 bpm in the first minute--and went up from there. (This was done in one of the the top cardiology offices in Chicago.) No injections were necessary (or done). Every article I've read in medical journals says diagnostic for POTS is 30 bpm in the first 10 minutes. BP sometimes changes on a tilt; sometimes it doesn't. (Mine bp went from 104/62 to 119/68; hr during the test went from 85 to 125 in first minute with high of 132. My valsalva test showed I was over 60 yrs old (I was only 42 at time of test). I don't think I knew a good day from a bad at the time I went through testing--I was just me ... who always had different capabilities/limits from others and whose heart was speeding along during waking hours.

I guess different offices/doctors practice differently. Just thought I'd add my story. Do they want to try you on any meds like florinef or midodrine anyway? Or heavy salt/fluids/compression hose? I guess bottom line, with or without a postive TTT, is that we all have to do what we have to do to take good care of ourselves and feel well! (There isn't a "cure" for this per se.) I wish managing this were easier... and I hope you find what works for you!

[KarenLorrel]

Gena...answer to your question. Dr. Grubb didn't do the genetic testing for EDS with me. He did an extensive examination...using the Breighton 9 point scale.

He also left me sitting with my legs handing off the exam table for a long time. When he came back he asked if my legs always turned blue...or mottled and I said yes..thinking it was 'normal.'

He then took my blood pressure sitting and then standing. (He had taken it before while sitting and my legs support by the floor)

After this he diagnosis Hyperjoint Mobility Syndrome, although he alternates using the terms EDS and Hyperjoint Mobility Syndrome, he believes all the EDS categories should be called Hyperjoint Mobility Syndrome. He explained that is a genetic connective tissue conditon and that is causes my POTS which causes the chronic fatigue.

This is not true in every person with POTS...it is what is causing mine.

Hope this answered your question.

Karen:)

[yogini]

Gena,

On my first TTT in March of this year, my heart rate went to 150 in 10 min and I vomited. Since then I have had a few other TTTs (because I have gone to other doctors who wanted to retest me). I was on medication during these tests and have "passed" all of them, even though I am nowhere close to normal on a daily basis. I am grateful to have the first TTT, because it is helpful "proof" that I ever had POTS. The doctors still see the tachycardia and BP drops, but they tell my condition is under control b/c of the meds. But I have the same question as you - why do I feel so awful if my condition is "under control"?

I also went to Mayo in Sept. and my autonomic tests (sweat, valsalva, etc.) were normal. When Dr. Low told me my autonomic nervous system was fine, I pulled up my pant leg and showed him my bright red feet and asked why they were red! He confessed that the tests only measure autonomic neuropathies if they reach a certain level, and that the level of my problem may be too small to show up on the test. Since my POTS was probably caused by a virus several months ago, he thinks that my body is healing itself. If yours was caused by a virus, this may be why your test came back normal.

-Rita

[Star382000]

Seem in a way 'lucky' that yours was caused by a virus and not something out of the blue per se and it's wonderful that your body is healing itself, really wonderful

best of wishes and luck to all of you

[briarrose]

I took this from heartcenteronline.com

This explains how TTT is performed and why

TILT TABLE TEST

( Upright Tilt Table Test )

Summary

A tilt table test is a diagnostic test used to help a physician determine why a patient has been having sudden drops in blood pressure, causing, for example, fainting spells (syncope). There are a number of reasons why a patient might faint, including low blood sugar (hypoglycemia), abnormal heart rhythms (e.g., tachycardia or bradycardia) or low blood pressure (hypotension). The tilt table test assesses whether the patient is fainting as a result of a sudden drop in blood pressure, due to a hyperactive reflex that causes the blood vessels to suddenly widen (dilate). It may be caused by dehydration, emotional stress or standing upright for a prolonged period of time. This type of fainting is now known as neurocardiogenic syncope, although many physicians and patients still refer to it as "vasovagal syncope".

The tilt table test is conducted on a pivoting table. By securing the patient on his or her back to the tilt table, and then tilting the table upright (head up and feet down), the factors leading to neurocardiogenic syncope may be simulated. Medications may also be given to the patient while he or she is upright to try to re-create the abnormal reflex. The patient's heart rate and blood pressure are monitored carefully throughout the test. Results from the test are available immediately, and a specific course of treatment can be prescribed at that time. Treatment may include medications.

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About tilt table tests

A tilt table test is a diagnostic test used to help a physician determine why a patient has been having fainting spells (syncope). There are a number of different factors that may cause fainting spells, and the tilt table test is used to assess one in particular ? a sudden drop in blood pressure (due to a widening of the blood vessels), often with a drop in heart rate as well. Fainting that results from this change in blood pressure and blood vessels is now called neurocardiogenic syncope, although many people still refer to the syndrome as vasovagal syncope.

Neurocardiogenic syncope often occurs after an event that causes emotional stress. It may also be provoked by dehydration or by standing upright for a prolonged period of time. Normally, stress increases the amount of adrenaline released by the body and causes the heart rate to speed up. However, stress may trigger a reflex in certain people that causes a sudden slowing of the heartbeat and a dangerous drop in blood pressure, leading to fainting.

Fainting may also result from other causes of low blood pressure, such as orthostatic hypotension or neurogenic orthostatic hypotension. These conditions are characterized by the body's inability to quickly regulate blood pressure especially when standing up quickly or after other abrupt changes in position. As a result, people feel temporarily light-headed after standing up too quickly or after standing in one position for a long period of time.

A tilt table test may also be recommended to individuals who do not experience fainting, but who have the need to lie down as a result of feeling lightheaded.

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Before and during tilt table tests

Before the test

To prepare for the tilt table test, patients will be asked to stop eating and drinking for at least six hours prior to the test. By completing the test on an empty stomach, patients are at less risk of side effects, such as nausea and vomiting. Most medications can be taken with only a sip of water, but the physician may ask a patient to suspend beta blockers, vasodilators and/or diuretics shortly before testing. However, you should always consult your physician before changing your medication schedule.

At the test site, the procedure will be explained, and the patient will have the opportunity to ask questions. There may be some paperwork to complete, including a medical history and/or a test consent form. The patient may be required to change into a hospital gown.

During the test

An intravenous (I.V.) line is started in the patient's arm, and blood pressure and heart rate monitoring begins. The patient lies down on the tilt table and is secured to the table by safety straps. Starting from a position where the patient is lying down flat on his or her back, the table is quickly moved into an almost upright position ? a tilt of about 60 to 80 degrees. There may be observable signs of fainting (syncope), and monitors may indicate a decrease in blood pressure. A medication that mimics the effect of adrenaline may be given and the test performed again. The medication is designed to provoke fainting in susceptible patients during the test, which will help the physician diagnose the cause of the fainting.

Patients who do not feel well at any point during the test should tell a medical professional immediately. Depending on the protocol, the test usually takes 30 to 45 minutes but may take more than an hour in some cases.

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After the tilt table test

After the test, the intravenous (I.V.) line and monitoring equipment are removed. Patients may feel some dizziness or fatigue. For this reason, driving is not recommended and a friend or relative should accompany the patient to and from the testing location. In most cases, there should be no reason why people cannot go back to their routine activities shortly after the test is completed. However, if the patient loses consciousness during the test, he or she may need to undergo extended hospital observation and further testing.

The test results will likely be provided on the same day and, depending on the diagnosis, appropriate medications may be prescribed at that time. If an abnormally slow heartbeat (bradycardia) was revealed, then a pacemaker may be necessary.