How to get tested for Dysautonomia/POTS?

[WarpedTrekker]

I am a 46yo male living in Austin, Texas. I've been experiencing symptoms that seem related to Dysautonomia for years. It started years ago with Sinus Tachycardia. During the day, if I worked out at the gym or exerted myself a lot, my heart rate would get "stuck" at a faster rate, and it would take hours to return to normal resting heart rate. I had issues with sleep apnea which caused me to have AFIB one night last year. Since then, I got put on Multaq (for AFIB), Bystolic (beta blocker), and Xarelto for history of blood clots (DVT/PE). The Multaq and Bystolic seemed to be controlling my HR just fine for a year. But I started having issues with Bradycardia, low 40-50's one day, then the next day my resting HR was up again to 60-80's.

I also started having some type of "unwell" feeling which caused respiratory depression on random days. I would feel unwell during the day, and then at night when I went to sleep, I was short of breath.  I use a BIPAP machine, and that was showing me having a lot of Central Apnea's, where I would quit breathing. I purchased a 24hr oximeter to wear at night, and that showed my oxygen dropping to low 80% or lower. On nights like this, I couldnt get sleep, and had to stay up all night long. What seemed to aggravate this condition, is if I ate a lot during the day, but I'm not 100% sure. This respiratory depression has been going on for the last three months or longer, and I'm not sure what is causing it. My sleep doctor says I DON'T have central apena issues. But these symptoms sure do happen occassionally, at least once or twice a month.

I'd also be at work, start feeling bad, walking around with brain fog, and feel dizzy. When I stand from a seated position, my heart races, and goes from 60 to 110+. Last week, I had this happen at home. I was on the couch for 30min, got up fairly fast, and my HR shot up to 110+, and I started having this shaking feeling all over. I had to call 911, and they said my blood pressure was a little elevated 140/100.

I'd like to get tested for Dysautonomia or POTS, but my cardiologist doesn't do any tilt table tests. I'm not sure what type of doctor I should look into seeing.

 

 

 

 

[StayAtHomeMom]

A cardiologist is who diagnosed me then from a recommendation from an EP cardiologist he sent me to a POTS specialist who was a neurologist. Both ordered a tilt table test for me. The first was at a local hospital the second was at his office. My specialist is 3 hours away though so I don't like driving there if I can avoid it. So he will order tests for me to get done locally and then receive the results.

I would try talking to you PCP and see if they can order it. If not they can send you to someone else who can. Even specialists will specialize within their field. 

Good luck and I hope you get tested soon. 

[Pistol]

You can ask your doc to refer you for the TTT to a hospital where they perform it. Or you can check with some larger hospitals and make an appointment with an EP, he can order the TTT and usually EP's treat dysautonomia. 

[WinterSown]

The TTT is not the POTS Machine. There is no pass or fail, no win or lose. It is meant to detect Orthostatic Intolerance. Your doctor can do a 'Poor Man's TTT' in their office to determine your degree of intolerance. That, along with a documented history of symptoms, will put you on the path to a diagnosis. 

 

[WarpedTrekker]

1 hour ago, WinterSown said:

The TTT is not the POTS Machine. There is no pass or fail, no win or lose. It is meant to detect Orthostatic Intolerance. Your doctor can do a 'Poor Man's TTT' in their office to determine your degree of intolerance. That, along with a documented history of symptoms, will put you on the path to a diagnosis. 

 

Thank you all for the responses. For a long time, I've felt so alone and vulnerable with these symptoms. My doctors basically gave up and said it was "anxiety" and referred me to the Mayo Clinic. But the thing is, I don't feel anxious when I go from a seated to standing position. I just feel my HR increase a lot and have palpitations. I know anxiety can fuel symptoms, but the symptoms came first, then the anxiety. Also before I started Multaq and the beta-blocker, my HR would go past 130bpm+. So it is lower now, but that is just because I'm on the heart-rate control medicine for AFIB.

You mentioned the "poor man's TTT". The last time I was in the E.R., they took my blood pressure and HR laying down, standing up,  and seated. But between each, they waited several minutes before taking the readings, "per their protocol". So my HR and BP stabilized by then. The problem is my HR shoots up immediately upon standing, and goes back down, so they didnt catch it. I also get quite dizzy when laying down in doctor's office, to sitting up. The room spins.

I'm going to my PCP (primary care doctor) today and going to see if he can offer any suggestions.

[Pistol]

@WarpedTrekker - it is actually correct to wait before taking your BP when changing positions. A change is normal in everyone immediately after sitting or standing up. In orthostatic intolerance the compensatory mechanisms are failing, therefore the HR and/or BP stay up. That is why they wait a few minutes after changing positions. 

[WinterSown]

2 hours ago, WarpedTrekker said:

Thank you all for the responses. For a long time, I've felt so alone and vulnerable with these symptoms. My doctors basically gave up and said it was "anxiety" and referred me to the Mayo Clinic. But the thing is, I don't feel anxious when I go from a seated to standing position. I just feel my HR increase a lot and have palpitations. I know anxiety can fuel symptoms, but the symptoms came first, then the anxiety. Also before I started Multaq and the beta-blocker, my HR would go past 130bpm+. So it is lower now, but that is just because I'm on the heart-rate control medicine for AFIB.

You mentioned the "poor man's TTT". The last time I was in the E.R., they took my blood pressure and HR laying down, standing up,  and seated. But between each, they waited several minutes before taking the readings, "per their protocol". So my HR and BP stabilized by then. The problem is my HR shoots up immediately upon standing, and goes back down, so they didnt catch it. I also get quite dizzy when laying down in doctor's office, to sitting up. The room spins.

I'm going to my PCP (primary care doctor) today and going to see if he can offer any suggestions.

I think talking to your primary is a great start. Ask him how to right now start minimizing these symptoms before you get tested again for anything. You need to get back to living your life ASAP; any advice the primary gives you will help. Good luck.

 

[paona]

I believe the anxiety thing is a copout go-to-response for some doctors.    My daughter's doctor brought it up in response to hearing about her heart racing, which was documented in a holter monitor test and the poor man's tilt table response test but she wasn't diagnosed at the time.  When she was 16 she was diagnosed at the Mayo Clinic with POTS and this doctor when presented with the same information from me, said within 5 minutes I think this is POTS.  He then ordered further testing which confirmed it.  My daughter did not have any anxiety at the time.  I was in the hospital over a year ago with the flu, blood pressure in the 200's especially when upright, and issues being upright with feeling like passing out.  The doctor thought a referral to a psychiatrist was in order.  I actually laughed and said, um, why?  She felt these symptoms were anxiety.  I said I would pass on the referral since I wasn't anxious.  I said I think my increased symptoms were related to having the flu.  The nurses did not feel I was anxious.  Actually I was and remain extremely ill and do very well mentally  at remaining focussed to push through my symptoms, and breathe mindfully through them.  I was diagnosed at the Rochester Mayo this past November with hyperadregenic issues and autonomic storms.  My norepinephrine levels were somewhat elevated when resting and significantly rose when upright.  So I have autonomic issues but not POTS.    Also keep a diary.  My daughter is in her early 20's now and chose to not use medication anymore for her POTS.  Unfortunately that wasn't a great decision and finally things got out of hand.  When she went back to her primary doctor he would not consider reinstating meds for POTS because she wasn't presenting in his office, the poor man's tilt table test didn't show it.    I had her keep a diary and find a new doctor.  He believed her and put her back on betablockers and she is making good progress again. Also my daughter had extremely low blood pressure as a teen but now doesn't have the low blood pressure as much but still the tachycardia when upright.  I think the picture of what is going on can change around.  Austin or Houston should have doctors or centers that specialize in dysautonomia.  You might just need some tweaking of your meds.  I'm still in that process and like you I have bradycardia in my sleep or when lying flat.  I find that if my heart rate makes this plunge I stand holding something and march my legs to increase my heart rate a little until I can safely attempt some other form of exercise to raise my heart rate.  For me 15 minutes on my stationary bike gets my heart rate back into the 60's or higher and then it remains for several hours.  I also take my blood pressure before doing meds and if my heart rate is too suppressed I have it set up with my doctor to take a partial dose to keep the blood pressure down some but not suppress my heart rate too much.  Beta blockers can certainly suppress heart rate to a point of bradycardia.    I am on a beta blocker but also another blood pressure med to suppress the norepinephrine.  You really need a specialist that deals with dysautonomia to help you sort this out since you are already on meds.  Going to the Mayo might be worth it to get things sorted out. 

[WarpedTrekker]

22 hours ago, Pistol said:

@WarpedTrekker - it is actually correct to wait before taking your BP when changing positions. A change is normal in everyone immediately after sitting or standing up. In orthostatic intolerance the compensatory mechanisms are failing, therefore the HR and/or BP stay up. That is why they wait a few minutes after changing positions. 

What about the temporary change in heart rate, that goes up when standing, from 70 to 110bpm+? Is it also correct to wait a couple minutes before taking pulse?

Usually my pulse will jump to 110bpm or so immediately upon standing, then level out at around 80-95bpm after a minute.

I'm just trying to determine if this increase from 70 to 110 immediately upon standing, is "normal". My PCP said it shouldnt increase that much. My cardiologist doesnt seem concerned but is referring me back to my EP. I'm currently waiting to hear from my EP to see if he runs tests for dysautonomia.

[dizzytizzy]

@WarpedTrekker: I take orthostatics every day. My EP has me lay down for at least 5 minutes, take BP and HR. Then stand and wait two minutes, then take BP and HR. I take BP and HR one last time after standing for 5 minutes.

I think a jump immediately upon standing is "normal" and an increase of up to 10 bpm or so after standing for two minutes is within normal limits. A more exaggerated response could indicate dehydration or blood pooling as the heart works harder to oxygenate the peripheral areas of the body. It has to be a sustained increase of 30+ bpm in HR to qualify as POTS though I believe. So while your immediate jump may be exaggerated, the body seems to correct itself and the results are normal. 

1. Did the ER give you fluids before taking those vitals? That could skew results.

2. Have you been checked for inner ear issues by an ENT? That could explain dizzy symptoms you get from positional changes. 

3. Doesn't AFIB cause wacky HR too? Not saying you can't have both AFIB and dysautonomia, but I thought the former caused widely-varying bpm that bring about a slew of symptoms. Is the AFIB well-controlled?  

[Pistol]

I have POTS and aflutter - I am aware of every beat of my heart when tachycardic but have no clue when I have atrial flutter - it gets caught on monitors even in the hospital and when they come in to check on me I have no clue anything is wrong. But when my HR jumps suddenly I can totally feel it, as well as any PVC's or PAC's.  Atrial flutter and Atrial fibrillation can cause a totally regular heart beat without any noticeable symptoms as in cardiac awareness but may cause dizziness, lightheadedness and other issues. 

[WarpedTrekker]

You mention dehydration and blood pooling.  My doctor mentioned that too, and said to drink a lot of liquid, but not just water, but electrolyte liquids. I have tried drinking 3 64oz bottles in a day, and still have the issue.  I also wear compression stockings due to previous DVT's, so blood shouldn't be pooling in my legs at all.

1. I don't recall when they started fluids, but at some point they did.
2. I had a couple of ENT visits just recently, and although it wasn't for this reason, he never said anything was wrong with inner ear.
3. Yes AFIB can cause abnormal beats, but I have not heard of it causing issues like this. I guess it could cause tachycardia if something is wrong with your pacemaker? My AFIB is well controlled with the Multaq. I use a Kardia Mobile EKG device , and have taken my EKG during these episodes, and it always showed normal rhythm. 

I just picked up a 24hr Holter Monitor from my EP. I did a couple of tests. I sat reclined in my recliner for 30min.  I immediately went to a standing position, my heart started palpitating, and I pressed the button on the monitor. I also took my pulse with my EKG device, and it showed it went from sitting 87bpm, to standing 118bpm. I remained standing and within two minutes, it did go down to 100bpm and started going lower. So it doesn't stay high very long, but I'm still concerned why it jumps so high at the beginning?

In the past, my resting HR would be 52-65bpm almost always, even when standing up at my desk at work. But now, it seems to take forever to drop down to even 80bpm while sitting quietly. Ever since last week when I had that major panic attack when I stood up, my resting HR has been more elevated.

When I was in the hospital last week for gallbladder surgery, they kept me overnight. My HR actually went into 40's sleeping, and was in 50's most of the time. Maybe because of some painkiller and medicine they gave me? Anyway, it was bizarre that it was low during that time, because that used to be my norm every day. But now since I'm home from the hospital, it is higher again.

 

9 hours ago, dizzytizzy said:

 

6 hours ago, Pistol said:

 

[Pistol]

@WarpedTrekker - surgery is a total trigger for autonomic dysfunction. Whenever I have even minor procedures done I get unstable with tachycardia, hypertension/hypotension and the whole shebang of POTS. After hernia surgery 2 years ago I was unstable for many weeks ( 4-6 ) and needed a long time to recondition my self to be able to stand and exercise without the tachycardia. It might be your problem too. If that is the case the best thing to do is to start slowly to "train" your body to adjust to position changes. Stand up slowly and increase the time upright slowly every time. That way your circulatory system will re-learn to adjust. When I can stand up without any big jumps in HR or BP I start slow and mild exercises to tolerance and increase them over time. In my case it can take a good month to recondition ONCE I CAN STAND without problems. 

[Peter Charlton]

It took me from January last year when I first got the breathlessness, brain fog dizzy, drunk zombie feeling, to December before I got my cardiologist to listen to my logic.

He, like the rest of them, said its anxiety, from am abused childhood back in the 60s.

So I said "I have never had a days sick in my life from childhood anxiety, why would I suddenly get it the day you put me on beta blockers?, whats the connection?", I then said" what makes more sense, is that beta blockers disrupt the Autonomic Nervous System by blocking adrenaline receptors, every single one of my symptoms, is a symptom of a disrupted autonomic nervous system, surely that warrants at least investigation"?

He said, "I think you are right", apologised for the anxiety fob off, and got my GP to refer me, so far to a diagnosis of "Autonomic Instability".

Last time I saw him he told me he now has another patient who has had the same permanent reaction to the same beta blocker, (I was only on a minimum dose for a couple of months, Jan and Feb 2017.)

 

[WarpedTrekker]

I finally got two doctor's names. One in Houston, Aziz Shaibani, and Dallas , Dr. Levine. I also found the UT Dysautonomia Center in Houston, which I'm going to contact Monday.

I'm still having some issues with palpitations when standing fast, and also when I was at the doctors office recently, I laid on the table. Then sat up, and was really dizzy. Room was spinning. Doctor and nurse just wrote it off, and said at my age (46), to just get up slower. 

I need to be careful when I get palpitations and racing heart, because it could mean I have another blood clot, DVT/PE. As long as I don't feel out of breath majorly, or have trouble breathing, then it shouldn't be clots. I'm on blood thinners, for previous DVT/PE, but still could get clots, although chance is low.

Last two days at work, I was going up one flight of stairs slowly, and I had some major palpitations, and heart raced. When I got to the top, I took my pulse and it was 120-130bpm. That is high for me, especially just walking up one flight of stairs. At one point I thought I was getting a little out of breath, but it wasn't as bad as in May 2018, when I had my most recent clots.

All of this is just giving me anxiety. I have Mayo Clinic scheduled for end of this month, but now think I could just go to Houston/Dallas first.

[yogini]

If you stand up slowly and walk around does your HR stay up 30 bpm or more?  Or is it only because you are getting up too fast?  For dysautonomia it would be a sustained increase, not caused by standing rapidly but just by standing.  You should also consider any symptoms of your blod clotting condition as well as side effects of the meds you are taking, which could be contributing to your symptoms.

 

[Echo]

Hi @WarpedTrekker, where I live I think only one hospital has the equipment for a TTT and I was told very frankly by one cardiologist I would not be getting referred for it because it was for extreme cases only. I went to another cardiologist and he had me do a full ECG (laying, standing, running) and what happened was that when I stood up from the laying down portion of the test, the T-waves turned upside down. It is normal for a couple of the T-waves to turn upside down upon standing, however mine was "widespread". Almost all the leads turned upside down. He actually had a puzzled look at the monitor, said "Ummm...I'll be back shortly." and then came back and said that he did some researching and apparently this is associated with autonomic dysfunction. My heart rate didn't go up by 30 (I think it was like 29 or 27), so I was diagnosed with a generic, non-POTS dysautonomia. 

[firewatcher]

I have no input other than to highly recommend Dr. Levine. He's got a bit of a "bad" reputation among POTSy's from his "Grinch Syndrome" comments and pushing for exercise as a treatment for POTS....BUT...I found him to be highly compassionate, incredibly smart and truly interested in his patients getting better.

I have consistently performed his exercise protocol for over two years and have improved. It hurts, it is hard and it is time consuming, but it is effective for me. I still have POTS symptoms and autonomic issues, but I am very functional now compared to where I was when I started.

POTS diagnosis and treatment is still very much a "point of view" thing with many doctors, so you will have to find a doctor that you mesh with and can treat you effectively.

[WarpedTrekker]

Well I got referred to Dr. Aziz Shaibani at Nerve & Muscle Center of Texas. Got an appointment scheduled.  Same distance from me as Dallas Dr. Levine, but I have family in Houston area, and can stop there to visit. Plus I know houston better then dallas area driving.

He seems to have some good reviews as well. I just hope the tests are genuine and not some crack-pot tests. I need to know what is going on with my heart rate.

They said I would need to stop my Beta Blocker medicine two days before testing. I'm on a low dose, so that shouldn't be a problem.

 

[Alan-pots-IST]

I was tested by him for your own good unless it's a safety issue don't be on the beta blockers are there going to affect the results of the test and it's going to be a waste of your time

[Pistol]

I had several autonomic tests done by different facilities and had to stop meds before all tests. Sometimes that was difficult. If you do not rely on meds to keep you functioning I would stop them before the test - according to your doctors instructions - to assure accurate results.