Found A Local Doctor! Scared Of Tests ...

[Anoj]

I am still trying to wrap my brain around my appointment yesterday. I have spent the past 16 months seeing a well-intended cardiologist and am taking Midodrine, Florinef and Zoloft. Long story short, he recommended I see an electrophysicist who in turn recommended a guy about an hour away. Said he was involved in fainting studies in the 1990s. Turns out the guy makes weekly visits to my town. I was able to see him yesterday, and I am floored!

Apparently, this guy started a lot of the research/testing that is currently being used now in Cleveland. ! He knows Dr. Grubb. AND HE'S LOCAL. OMG! I have done extensive research and have never seen this guy's name. I think he, like many cardiologists, don't go into the field to treat fainting, however he is willing to work with me. (He called this "public service" - in other words, this is not what he would prefer to be doing.)

I am now going to have what I assume to be a proper workup. Here's what's on the form:

• Head up tilt
  
• Head up tilt with Isoproterenol
  
• Head up tilt with NTG stimulation
  

He writes under patient's diagnosis:

• Syncope (fainting)
  
• Near-syncope (severe dizziness)
  
• Chronic fatigue (?? do not like)
  
• Autonomic Dysfunction
  
• Apparent Seizure Disorders (???)
  

Risks:

• Syncope (fainting)
  
• Seizure (convulsions) SERIOUSLY?
  
• Hypertension/hypertension
  
• arrhythmia and conduction disturbances
  

Part of me is like - do I really need this? It sounds horrible! Other part of me is very excied to find out exactly what kind of dysautonomia I have. I know I have it, just not the details.

I am really scared about the tests! I don't have frequent fainting, but when I do, it takes at least 2 months to recover. The past year I would say I've been functional maybe 50% of the time, if I'm lucky. I realize that my case could be worse, but it's still life-altering to say the least.

No meds a week before the tests? TERRIFYING.

Recovery time? TERRIFYING.

One-hour ride to the hospital - with no meds? TERRIFYING. (I have terrible near-syncope during long car rides.)

Please tell me what I can expect from all of this. Please please please, I need some words from someone who has been through this. I have so many mixed emotions - excited, scared, etc.

Meanwhile I will do some research on TTT. I had one done before, but not to this degree.

Thank you!

[Anoj]

oh - also he said he thinks my problem is related to the vagus nerve and said i may need a "vagus suppressor." what is he talking about? a beta blocker? i thought vagal supressor = fainting, so i'm confused.

[sue1234]

First off--YAY, someone close to you that gets it!! I have no clue what a vagus suppressor might be. As you find out, please let us know.

I've gone through the TTT four times, only once with a medication given to me. It did not make me faint, but did begin doing something different, maybe lowered my b/p. What does your b/p normally do? When you are up, does it go up or down?

[Anoj]

when i had the original TTT done, they didn't monitor any chemicals (dopamine, etc.?) i still have no idea how that works. my heart rate and blood pressure went down after being administered nitroglycerine. i almost fainted and "made" the nurse put me down. :/ they said my TTT was "positive." no other details.

[martiz]

what area of the country? I have not found someone to help me. Any info would be great.

[Guest Alex]

Anoj,

when I had my TTT aside from the tilting at 70 degrees when my heart jumped from 90's to 140's followed by my fainting approx 6 min into the test, I also had 3 substances injected into my blood while my heart was monitored and also blood samples were drawn.

It sounds scarier than it is - and believe me when I say I am horrible as a patient - scared of needles, procedures, hospitals and doctors in general etc.

one of the substances they injected was atropine - i believe to increase my heart rate while monitoring it, another one was isoproterenol - to increase my heart rate again while monitoring it, and then, there was a third one but by that time I was too tired and I cannot recall what it was. During the whole test I tried to keep telling myself that I am safe in the hospital/testing room, that those people have tons of experience administering those meds, that they are aware of what may posiibly go wrong and ready to intervene just in case.

I don't know what a vagus suppressor might be, but I bet if you ask the dr or the nurses before the procedure they will be able to explain things to you.

I also had go stop all my meds couple of days before the test - I was on bisoprolol at the time and my heart rate was constantly over 100 even when laying down - I even did my cardiac stress test the day before the TTT with a beginning resting heart rate of over 120 ( I recall the nurse looking at me like i was a basket case and asking me whether i am sure i want to do that... As if I had a choice). Also, my ride to the hospital was 2 hours long - not pleasant, but I managed to hold myself together despite being bed-bound for a few months before all this testing.

Please feel free to pm me if you consider that I could give you any more info.

I know how you feel as I went into this completely "unprepared" - I knew almost nothing about the tilt test. The nurses and the dr in the autonomic lab tried their best to explain things to me, but my brain was not willing to function properly at that point. To be honest I might have freaked out had I known more details about the test itself. It's all behind me know, and I realize that I had no other option in order to get a proper diagnosis.

I hope this helps, and believe me when i say that it's less scarier than it sounds. You can do this!

I'll keep my fingers crossed for you.

Take care.

Alex

[Guest Alex]

come to think of it, i believe atropine is the vagus suppressor, as it blocks the action of the vagus nerve. also, i think (not 100% sure) that the 3rd substance used was nitroglycerine, or anyway something that lowers ones heart rate (but again I wouldn't bet on it).

Alex

[arizona girl]

Some one is driving you right? If you can recline in the car and put your feet up on the dash that helps me. Also wear shoes with cushioned bottoms. I only wore socks and it was painful. I'd also where shorts or cropped pants so they can see what color your legs turn. Make sure that they have you layed down long enough that you get to your resting heart rate and blood pressure before they start the test. No talking either as that can elevated bp/hr as well. Quiet meditative before start.

I didn't faint until the nitro under the tongue during the second phase. My inital bp/hr where really high and keep going up the longer I stood. When the syncope acually happened I dropped like a rock fast and was actual still standing when my bp/hr were unmeasureable watching them. I then felt all my presyncope symptoms and said it is happening this is what happens in real life, please put me down and then I guess I fainted and almost went into asystoli. At first I didn't think I fainted because I came around as soon as the table went down, but it said pass out on the test and the doc said I did. I was at about 30 minutes when the faint happened.

It ain't a fun test but necessary to have it done by someone who knows what they are doing.

Good luck.

[Anoj]

Anoj,

when I had my TTT aside from the tilting at 70 degrees when my heart jumped from 90's to 140's followed by my fainting approx 6 min into the test, I also had 3 substances injected into my blood while my heart was monitored and also blood samples were drawn.

It sounds scarier than it is - and believe me when I say I am horrible as a patient - scared of needles, procedures, hospitals and doctors in general etc.

one of the substances they injected was atropine - i believe to increase my heart rate while monitoring it, another one was isoproterenol - to increase my heart rate again while monitoring it, and then, there was a third one but by that time I was too tired and I cannot recall what it was. During the whole test I tried to keep telling myself that I am safe in the hospital/testing room, that those people have tons of experience administering those meds, that they are aware of what may posiibly go wrong and ready to intervene just in case.

I don't know what a vagus suppressor might be, but I bet if you ask the dr or the nurses before the procedure they will be able to explain things to you.

I also had go stop all my meds couple of days before the test - I was on bisoprolol at the time and my heart rate was constantly over 100 even when laying down - I even did my cardiac stress test the day before the TTT with a beginning resting heart rate of over 120 ( I recall the nurse looking at me like i was a basket case and asking me whether i am sure i want to do that... As if I had a choice). Also, my ride to the hospital was 2 hours long - not pleasant, but I managed to hold myself together despite being bed-bound for a few months before all this testing.

Please feel free to pm me if you consider that I could give you any more info.

I know how you feel as I went into this completely "unprepared" - I knew almost nothing about the tilt test. The nurses and the dr in the autonomic lab tried their best to explain things to me, but my brain was not willing to function properly at that point. To be honest I might have freaked out had I known more details about the test itself. It's all behind me know, and I realize that I had no other option in order to get a proper diagnosis.

I hope this helps, and believe me when i say that it's less scarier than it sounds. You can do this!

I'll keep my fingers crossed for you.

Take care.

Alex

ok, this is all very, very good info. thank you so much!

does anyone know exactly WHAT they are monitoring, besides heart rate and blood pressure? aren't there dopamines or something like that, too?

he mentioned the vagus suppressor as a form of treatment if the tilt table showed his suspicions were correct - that i have an overactive vagus response. this wasn't in reference to during the TTT. i think what he was saying was to get my vagus nerve to stop freaking out all the time. i rarely get tachy, although i have sometimes, so i'm pretty sure i don't have POTS.

[Anoj]

Some one is driving you right? If you can recline in the car and put your feet up on the dash that helps me. Also wear shoes with cushioned bottoms. I only wore socks and it was painful. I'd also where shorts or cropped pants so they can see what color your legs turn. Make sure that they have you layed down long enough that you get to your resting heart rate and blood pressure before they start the test. No talking either as that can elevated bp/hr as well. Quiet meditative before start.

I didn't faint until the nitro under the tongue during the second phase. My inital bp/hr where really high and keep going up the longer I stood. When the syncope acually happened I dropped like a rock fast and was actual still standing when my bp/hr were unmeasureable watching them. I then felt all my presyncope symptoms and said it is happening this is what happens in real life, please put me down and then I guess I fainted and almost went into asystoli. At first I didn't think I fainted because I came around as soon as the table went down, but it said pass out on the test and the doc said I did. I was at about 30 minutes when the faint happened.

It ain't a fun test but necessary to have it done by someone who knows what they are doing.

Good luck.

oh yes, someone is definitely driving me! in my case, my sickness related to the car ride is more from motion, not positioning. for some reason the faster i go, the worse my symptoms get. the only way i can survive a long car ride is to have someone drive me as slow as possible on the interstate. 70 mph is too much. at 55 i feel better. i also fixate on one object, by say reading a magazine. i think it tricks my brain into thinking it's still.

i guess his theory is that all of the stimulation is causing a vagus response?

thanks for your reply!

[Anoj]

I guess I fainted and almost went into asystoli.

wait - i googled this. scary! your heart can stop? how do they fix that?

[Guest Alex]

if i remember correctly they measure the adrenaline in the blood samples taken before and during the test. Also the oxygen saturation in your blood, and they recorded several ecg's throughout the procedure.

Arizona girl has an excellent point about your trip. I'd add - have someone with you to drive you back home, unless they keep you in the hospital after the procedure. They definitely did not rush me through the procedure and tried their best to make me as relaxed and comfortable as possible - given the circumstances.

Glad to hear I was able to help.

best of luck, and let us know how it goes.

Alex

[arizona girl]

The testers should be aware that can happen, you can ask them. Your in controlled environment and once the table is down you usually stablize, they know what to do if that doesn't work. You can ask them that too, what do you do if my heart should stop. Many docs stop right before syncope, so it doesn't happen.

[Anoj]

i don't think this guy is gonna stop before syncope. he called it the "torture chamber" and said they wouldn't stop. i know that sounds bad, but in the context of the conversation it was kinda funny.

[Anoj]

if i remember correctly they measure the adrenaline in the blood samples taken before and during the test. Also the oxygen saturation in your blood, and they recorded several ecg's throughout the procedure.

is there any place on this website that explains what they're testing and what they're looking for in specifics? also the possible diagnoses? idk much about hyper vs. hypoadrenic issues, etc.

[arizona girl]

It depends on the autonomic center what other tests they do during your tilt. Mine they only were measuring heart rate and BP and an ekg was hooked up to. Some center's look at the other stuff like the hormones. What did your doctor tell you there were going to measure.

A positive test will show an number of abnormalities. Hypotension, syncope, 30 points or greater in HR from supine, it can also show orthostatice hypertension.

That is what I had, I went up up and was still standing, then nitro still went up then a sudden drop and syncope. Later I had supine and standing catechcolamines. My norepi went from 400 to 1300. A positive test so I guess I have the hyper kind, but that is only because my body is still compensating by producing excess norepi to keep oxygen in the brain. I pretty sure if I couldn't do that I would be hypotensive on standing.

[Guest Alex]

not sure about a place on this site where you might have the procedure explained - I'm fairly new here and still learning, sorry.

Maybe you want to try a google search, but to be honest you might get scared after reading what you're going to find online.

If I were you I'd try to get as much info from the dr before the test. Plus, explaining to the dr and nurses about your fears might put your mind at ease.

Also, to the best of my knowledge, if at any time during the test you feel uncomfortable and let them know about it, and ask them to stop the procedure, they have to listen to you. Don't quote me on this, but I believe no dr can do any procedure against your will.

Good luck! It sounds scarier than you think.

Alex

[Guest Alex]

http://www.nymc.edu/fhp/centers/syncope/POTS.htm

Anoj,

if you browse through the info on the website above you may be able to find more answers to your questions.

best of luck

Alex

[Anoj]

hello all. here's an update and questions.

so far i have had the following tests done:

1. vestibular testing - normal
   
2. blood volume
   
3. 48-hour holter (where he would look for "different" things than usual - don't know what those things are)
   
4. sweat test - put hands and feet on a scanner type machine
   
5. TTT - blood was drawn for baseline & post-syncope - measured for aldoesterone, catecholemines and renin
   
6. isoproterenol injection - he let me do this supine instead of repeating head up tilt
   

i'm impressed that i've gotten all of these tests locally. i thought i'd have to travel to vandy, etc., for this type of thing. what i'm wondering is how this testing measures up to what's at larger, specialized facilities? what do you guys think? this sounds pretty thorough, eh?

i don't have any test results yet.

now, for my questions.

when i first came down with all of this, my BP was low. after a major crash and hospitalization it was 80/50. during my first "simple" TTT, BP and heart rate dropped drastically. i had pre-syncope after being given NTG but didn't faint. this was in 2010.

fast forward to 2012. yesterday, during the TTT, my BP actually went UP. this is something i started to notice during car rides when i would get that sick fainty feeling - measured my BP during one of these spells and it was high. CONFUSED. i thought your BP was supposed to DROP when you felt faint, not rise? so yesterday, after they tilted me up, my BP went up to 140/something. i did not faint during the test but got bad pre-syncope. at that point when i almost fainted, she said it had a sudden drop down to 90/something. for some reason my body seemed to recover, because they did not put me down, and i continued to remain upright without fainting - although felt like death.

there were no drugs administered at this time. however, after the tilt, the doc did give me isoproterenol. i was allowed to remain supine, and my heart rate & BP were measured. is this weird? has anyone ever heard of this? i thought they were supposed to raise me up again. maybe he felt he had the info he needed. anyway, i felt like my heart was going to race out of my throat during this injection. i'm not sure what they're looking for there.

i am not sure what my heart rate did during the TTT. i have never thought i had true POTS because my heart did not tend to race. HOWEVER, now that i am off all meds, i have noticed that the slightest activity causes my heart to beat faster, and i get short of breath. i guess that's what they call "exercise intolerance." my heart rate doesn't rise just from standing, however, so i never thought of this as being POTS. i am not sure that i meet the true criteria for POTS. can you have POTS if your heart rate doesn't jump upon standing? what about with simple exertion? for example, if i take a bath, just the activity of drying myself off or getting dressed causes my heart to beat fast. is this a symptom of POTS?

i am starting to think that maybe i have the hyperadrenergic form of POTS - although i seldom get tachy - but i do have frequent heart palps.

can anyone shed any light on this? i am really confused.

i cannot wait to get these results!

[Anoj]

OH - by the way! it took them 1.5 hours each time (blood volume & TTT) to stick a vein. does this point to low blood volume? i would think so.

[Anoj]

Bumping this up in case anyone has feedback.

Also, unfortunately the TTT has taken me out pretty bad. I'm very fatigued and dizzy now. I have no follow up appt. and having to miss work. I hope I get some news soon.