Confused About Tilt Table Results

[Jeng5158]

So I had my tilt table test done last Friday and I'm a bit confused. It was done by an electrophysiologist so I feel like I can't really challenge what he says because I'm not the one with years of training in this field. My normal resting heart rate is around 85-95 but it was going at 115 before the test and no matter how much slow breathing I did I couldn't get it to go down so they just started the test. I didn't mentally feel nervous but I just couldn't get my body to calm down.

About 15 minutes into the tilt table I felt dizzy and was sweating. He came up to me and said that my heart rate had increased quite a bit but my blood pressure was holding steady, so he didn't feel it was POTS but that they would keep going with the test. First - isn't the diagnosis of POTS based on increase in HR WITHOUT hypotension??? They kept going and after 25 or so minutes, they administered nitroglycerin. I felt more palpitations and was sweating even more but never fainted. He then came up and said he still felt it wasn't POTS but they would wait 5-10 more minutes. Right when he said over the intercom to the nurse that it was time to stop the test, I felt a huge surge of lightheadedness. The nurse said my blood pressure had dropped suddenly from 125ish systolic to 87ish. I never fully passed out because they lowered the table right away.

The EP came over and said again that he didn't think it was POTS. My heart rate apparently got up to 170 though (don't know if that was before or after nitroglycerin) and was high throughout the whole thing, but that I had already started high. He said he feels it's inappropriate sinus tachycardia, possibly from dehydration. Again, isn't the diagnosis of inappropriate sinus tachycardia based on increased resting HR WITHOUT any other explainable cause (like dehydration)? And he knew by looking at past PCP visits that my resting is normally below 100.

So not sure what to think. I guess it doesn't matter that much because no matter what the diagnosis, I don't want medication unless my symptoms are intolerable. I just feel like POTS would be the diagnosis based on what I heard my vitals were during the test and I'm confused about how the EP made his conclusions. During the active standing test, my resting is 85-95 and goes up to 140ish when standing, I also get red/purple feet. They had me keep my shoes on during the test and didn't look at all for the pooling of blood.

Has anyone had a similar experience or any insight?

[Katybug]

Hi Jengs,

First, I'm sorry that this seems like it's going to be difficult, and, that you are sick at all.

That being said, whether they like to admit it or not, doctors work for us. You could take information on the diagnostic criteria in to this doctor and question his interpretation. If you are not comfortable doing that, I would encourage you to find another doctor, preferably one that is a dysautonomia specialist, and ask that the raw data, not just the report, from this tilt test be sent to the new doctor for a second opinion. In the meantime, I would also request a copy of both this doctor's report as well as the raw data from the test for your records. (I have had raw data mysteriously disappear when I have asked it to be sent to other doctors.)

You are correct that the accepted criteria for POTS diagnosis is based on HR, not bp. Also, that sudden drop in your bp at the end should not be discounted, either. We can have more that one type of dysautonomia, for example POTS and orthostatic hypotension. Was the test conducted for a full 45 minutes?

Just so you don't feel alone, the on call cardiologist who was supervising my first tilt test acknowledged to me on that day that there was a problem. Then, he wrote a report to my cardiologist saying the test was normal. I had to tell her what went on during the test and ask her to interpret the raw data herself. When she did that, I got my POTS diagnosis. My HR had doubled from resting to upright during the test and I knew it so I was very frustrated when she read original report to me. Then, a week later, she expressed her own frustration that the report didn't accurately diagnose my POTS and that I had to even ask for a second opinion.

Take care,

Katie

[Jeng5158]

Thanks for your reply. I believe the test was 35 minutes total. It just stinks because I'm just exhausted. I'm sick of tests, I'm sick of doctor's visits, I'm sick of paying for bills for tests, etc. I'm so tired and at the point where I want to be done searching. This whole thing started with stomach issues and losing 30 lbs - I had dizziness and palpitations but thought it was just because I wasn't eating much - so I've already had a gastric emptying study, EGD, colonoscopy. Then when I looked into it further and had the aha moment where I realized the nausea/cramps were from something like POTS and dizziness was the main symptom, not the other way around, I had an EKG and echocardiogram. I feel like I'm wasting exorbitant amounts of money going on a wild goose chase that isn't going to change my outcome. I'm just tired of being told that I'm fine, but then that I might have something, but then I might have something else, etc.

There is an autonomic specialist at Froedtert in Milwaukee, but you have to have full autonomic testing for him to see you and I'm sure he's booking out for months. I just don't know if I have the energy to keep pursuing this or if I should just deal with the symptoms. :/

[srb]

I can really empathize with your thoughts and feelings, Jeng5158. I had to get a second opinion before I got help. And I have moments when I'm proud I didn't give up and moments when I feel so guilty for all the time and money spent on this horrible disorder. I just received a bill of over $3,000.00 for lab work - just lab work - because I decided to finally pursue the hypermobility/EDS possiblity for the cause of my POTS. Ugh. So I don't have answers for you, but I do understand that unbelievably frustrating place you are in...

For me, I felt that I needed medication to meet my responsibilities so that was the main reason I persisted I guess.

[Jeng5158]

Yes, I am actually wondering about hypermobility/EDS because I fit the Breighton criteria/other EDS criteria and I remember getting worked up for a connective tissue disorder when I was a kid but my mom has no clue if they diagnosed me with anything - she has a lot of various psychiatric illnesses and tends to be more focused on herself..... - so I requested my records from the Children's hospital. My husband and I are planning on starting to try to have kids next year or so, and I know there are some issues during pregnancy related to EDS that I want to be aware of if I do in fact have it. I'm afraid to bring it up to my PCP because I feel like he's just going to think I'm just grasping at straws to be diagnosed with something or that I'm just anxious. Plus, I don't think he really knows much about it because when I told him that I am hypermobile when I told him my concern that I might have POTS, he said "hmmm....I don't really think that's related" - EDS/hypermobility and POTS have a huge correlation, so I think he's just uneducated about all of it.

Thanks for your responses, I really appreciate it! I don't like talking about this stuff with my husband because I don't want to annoy him or feel like I've taken on the "sick role" and it's nice hearing other's experiences so I don't feel crazy

[TCP]

I have EDS and POTS

[Jeng5158]

Update! My PCP emailed me with results and said "Dr. So and so (the EP) didn't think it was POTS. just drink more fluids and if we need to we can try medication in the future. if you have any questions let me know." I replied back saying I was confused about the results and what happened during the test, so he reread the criteria and talked to the EP, who then said that I DO have POTS. Nothing like having to educate an electrophysiologist about the diagnostic criteria! lol

Also got a referral to a rheumatologist to evalute for Ehlers-Danlos - while I'm beyond sick of seeing doctors and having tests, I figure if my husband and I are planning to start having kids next year, it's probably good to know if there is a genetic disorder or if pregnancy would be affected

It's such a relief having an actual, confirmed diagnosis!

[Katybug]

Good for you for standing up for yoursellf! And, better, that it resulted in a diagnosis!

[SarahA33]

Jen, we have to be our biggest advocates. This was the perfect example. I second Katie -- good for you for standing up for yourself and following your intuition!

[Jeng5158]

Even crazier now, the EP called me this morning to apologize. He did say "you have a good doctor (my family doctor), since he caught it so I could change the report" and I sooooooo wanted to say no, I actually was the one to catch it, but I was so shocked that he had called I decided not to say anything and just accept the apology

[TCP]

Confusion does abound over tilt table results.

The first one I had I was told that I had POTS and Vasovagal Syncope/NCS after the test, but the consultant who reviewed the results said that I hadn't got either!
The second one I was told I definitely had POTS as a rise of 37 bpm. The same consultant didn't seem totally convinced as there was no NCS, but luckily MY cardiologist said he had no doubt that I had. He is a well trained Cardio and Electrophysiologist.

It's down to training and doctors having faith and confidence in diagnoses.

[Bigskyfam]

Ahhh everyday we are educating. I found my voice with this illness. I've always been a type a but I second guessed myself. Not so much anymore. I've walked into rheum for my eds type 3 dx... Based on clinical not lab. They've left the room before and have come back stating the same thing I just said to them. Patience perseverance and planning,... Start your folder of knowledge. Share when you need to.

Welcome to camp wanna new nervous system.

[Bigskyfam]

I still left the rheum office with the dx of hypermobility with possibility of eds type 3

With hypermobile joints except back, swelling and joint pain, mild slips of joints, easy bruising, pots and aortic root dilation

[TCP]

Yes, I was diagnosed years ago with ME/CFS and in recent years I started to wonder if there was more to it. I believed that I had POTS and EDS III after much research and my GP referred me to a cardiologist and rheumatologist. The rheumatologist said after an hour long examination and looking into my health background decided that I had 'Ehlers-Danlos Syndrome Hypermobility Type'. I was very happy about this as I'd had knee dislocations in years gone by, loose joints, IBS and autonomic issues. It obviously took longer for the POTS diagnosis to come.

Doctors generally want test results and won't look into symptom history. They should listen to their patients and not rely solely on one test after another.