Newest Tilt Test Results From Cleveland Clinic

[Birdlady]

As some of you know, I went to Cleveland Clinic on Thursday to get another tilt test done and to schedule further testing. My local doctor even though he is supposedly this "POTS expert" failed to do any more testing on me and I'm looking for the underlying cause of my POTS rather than simply treating symptoms. He's not interested in underlying causes whatsoever. Apparently Dr. J at CC knows my doctor and was shocked to hear of this too. I swear some of these doctors look good on paper, but when it comes to actually dealing with patients, they aren't good at all.

These are the results of my TTT. They did not use any meds during the test and I came off of my beta blocker to get a better baseline. My catecholamine levels were taken, but Dr. F said those would take at least a week to come back.

Stage----BP-----HR

C-01----101/61 74

C-02----105/56 72

C-03----105/61 74

C-Mean-104/59 73

30-01---114/66 89

30-02---109/61 88

45-01---106/61 103

45-02---108/68 106

70-01---115/71 119

70-02---114/64 123

70-03---114/67 126

70-04---106/63 125

70-05---108/59 133

70-06---104/60 133

70-07----99/64 135

70-08---107/63 125

70-09---108/64 135

70-10---107/60 133

70-11---104/68 135

70-12---101/66 133

70-13---107/62 140

70-14---103/63 140

70-15---121/74 145

70-16---106/61 145

70-17---109/66 142

70-18---127/81 150

70-19---107/74 148

70-20---116/71 145

70-21---121/68 140

70-22---101/61 140

70-23---103/67 148

70-24---114/54 153

70-25---107/66 148

70-26---121/49 142

70-27---108/63 140

70-28---101/46 140

70-29----88/65 148

70-30----98/53 145

70-31---102/69 145

70-32----90/65 140

70-33----99/50 148

70-34---101/69 148

70-35---100/57 150

70-36---100/55 150

70-37---101/66 148

70-38----95/67 145

70-39----94/57 150

70-40----88/64 148

70-41----96/48 148

70-42----93/48 153

70-43----92/69 150

70-44---103/55 150

70-45----95/51 150

Rec-01--126/62 77 I was having major heart palps. PVC's with couplets

Rec-02--114/59 75 1' Marked sinus arrhythmia was noted

Rec-03--110/57 84 More palps

Rec-04--107/55 83

Rec-05--107/53 83

What do you guys think? Obviously if my catecholamines are elevated, they can't be that high since my BP's aren't going up. Is it possible to have high catecholamines and low BP's? During the test I was getting butterflies in my stomach like what you get if someone jumps out in front of you and scares you. I also started to get very very hot, sweaty, flush and thirsty. They also had to take the sheet off of me. It was freezing in this room beforehand, so something was happening there.

Do any of you have suggestions on what other tests I should have done with these results? I think they want me to do the QSART, valsalva testing and some type of heart mapping.

I was treated pretty miserably at first because they didn't believe me. I was in the autonomic department and they thought I was making it up?! Why would I be making up my HR upon standing? The one nurse was very rude to me, second guessing every single thing I would say. I told her that my HR's can easily reach 160 when I stand up and she had the nerve to say "Well you walked the whole way back to the exam room, you got weighed and you seemed fine". I told her that if she had taken my pulse when I first got in the room, that it was probably 140+. I was really mad that a nurse in the autonomic department would even say something as rude as that to a patient! After my TTT results came back, they weren't second guessing me any longer. Their jerky attitudes had completely disappeared. It's a shame really that they didn't believe me.../sigh Overall, even with all of that, I give them a 7/10. The TTT was done very well. The nurses were very friendly, paid attention to every little detail and followed all of the procedures.

[nunntrio]

Thanks for posting about your experience. I am on the same path as you. I am trying to find the cause of my POTS. I have had the QSART to rule out small fiber neurpathy. It is a very easy test to have done. If this comes back posotive you know there is a problem is with your nerves. I think a skin bioposy is more sensitive but not sure. The Valsalva and several other tests are to rule out pure autonomic failure. These are also fairly easy. At Vanderbilt the had me keep my hand in ice water for what seems like forever. That was the worst part. Unfortunately these tests have yet to yeild any answers for me but if they come back positive for you they will give you some answers. I would recommend them. I am currently persuing a skin bioposy to definitely rule out SFN. I do not know anything about heart mapping but it sounds interesting.

Keep us posted on your continued experience with the CC. It sounds like after your TT they started to take you seriously. I would love to find a place to go if I run into a dead end with my skin biopsy. I do not want to go somwhere if they are only going to tell me I have POTS and give me yet another BB.

[Birdlady]

No problem at all. I love to see other people's tilt test results for comparison and I hope others are the same as me! I completely hear you on the "I do not want to go somwhere if they are only going to tell me I have POTS and give me yet another BB". Exactly!!! My local EP is worthless and that's about all he is good for, which is depressing to me. If CC can help me to rule out or rule in potential underlying causes, then that will make me a lot happier. Ultimately if I need to go on a BB, then I won't be quite so aggitated by it. As it stands now, my EP put me on a beta blocker and basically said "see you in 6 months..." Uh...that's not acceptable to me!

I know the doctor I saw at CC isn't really good with prolonged care, but I'm okay with that. If she can send me in the right direction, then that's more than what my local EP has done for me and I've been seeing him for about a year now.

I am very interested to see how these other tests go for me. I'll be sure to post back my results and experiences. Maybe this time they won't be quite so rude to me! Ugh...

[Notgivinup]

"Well you walked the whole way back to the exam room, you got weighed and you seemed fine".

How horribly rude, presumptuous, unprofessional,and just downright WRONG. I've had the same experience, when I asked a nurse to do my vitals standing up. I overheard her in the hallway talking to another nurse, she said in a whispering tone....." She made me take her B/P standing. It doesn't matter if they're sitting or standing".

This was at a cardiologists office. I was sooo angry I wanted to scream at her. But I said nothing. That was early on in my dx. I'll NEVER keep quiet again. I'm sick of it.

[sandymbme]

I had my testing done at Cleveland Clinic as well. As far as follow up care I was totally underwhelmed, it seemed like the only thing they cared about at all was the number of syncopal episodes I had experienced since my last visit. Since I am not one who faints often, if ever, my syncopes have very little to do with how I am feeling on a day to day basis. I get lots of near-syncopes, dizziness, and crash into walls and dressers on a pretty much daily basis. But my primary symptoms have always been migraines, weakness, fatigue, and GI complaints. So looking strictly at syncope does nada to resolve any of the issues that totally rule my life on a daily basis. So I see Dr. Grubb in Toledo now for my POTS management.

That being said, they were vital at Cleveland Clinic in determining an accurate diagnosis. I live a few hours away (in Columbus) and doctors around here were absolutely useless in determining a cause for my crippling and unceasing migraines. I had one neurologist tell me to my face the only thing I needed was a good anti-depressant. GRRRRRR!!!!! But Dr. Stillman at the Cleveland Clinic called it on my very first visit to him. He noticed my elevated heart rate and low blood pressure and suggested a tilt table test on my very first consultation with him. Which I stupidly put off for several more months because my local neurologist insisted that there was no way I could have POTS. (He didn't really have any reason for thinking this, just said the test would be a huge waste of my time. I now kick myself for ever having listened as I bombed my tilt with flying colors!)

I have had a lot of testing at the Cleveland Clinic, and they have been unable to ever come up with a clear cause for my POTS. Just lucky, I guess!

Sandy

[Birdlady]

Well if CC goes off of the number of syncopes, then I'm in trouble because I've never fainted.

I'm certainly not expecting any sort of miracles. After all if there was a simple cure, then we all wouldn't be here suffering so much. I am really interested to see what my catecholamine levels were and then I'll go from there. I live fairly close (about 2 hours away).

I'd love to hear opinions on the QSART and valsalva testing. Do any of you think it is worth the effort? Will it give me any further information about what might be causing the problem? Obviously testing is good, but only up to a certain point.

I'm getting some nutrient testing done this week and I really hope something shows up on it. If this is just a rare nutrient deficiency, then I might get better.

[sandymbme]

I has the qsart and the skin biopsy done, which in my case only ruled out small fiber neuropathy. While I am glad I at least don't have to contend with that, I would have appreciated at least have a clear answer, and perhaps something to treat.

Sandy

[DEBRAA99]

How you were treated at CC does not surprise me at all. Was treated the same way. I did the TTT there, had to stop about 5 minutes in due to chest pain. Results were read by Dr. F. She stated severe positive result. Yet Doctor J, "overruled" her and said it was the Coreg I was on. Funny, I wasn't on Coreg then. I had stopped it about 2 weeks prior. Unfortunately, I have to go back there this coming week. Most definitely will not go back to Dr. J if I can avoid it. The fact that he was promoted to director has clearly gone to his head. I have asked repeatedly for written tests results, and got nothing. You are right, many Doctors look good on paper and that is it.

[Birdlady]

I didn't really talk to Dr. J that long. Maybe like 6 minutes? He seemed pleasant and ironically knew my EP, which made for an interesting conversation ...He told me other testing that could be done etc.

It sounds like they have an attitude if something goes wrong and you can't complete the TTT? I felt like I had to prove myself to everyone there, which is really weird. If my TTT results hadn't been so conclusive, I'd probably given them 2/10 for their attitude problems. No one is caring there except for the nurses/techs doing the TTT.

If anyone is going there, don't expect to be treated very nicely... Let them do the tests and then decide if you want to do follow up care with them.

[nunntrio]

The fact that they mentioned doing these further tests for you is encouragiing. It sounds like they maybe willing to dig a little deeper in your case. I definitely think these tests are worth it. They are not that invasive and they hold at least the possibility of an end diagnosis. I lean towards the belief the POTS is a symptom not a diagnosis. If the QSART comes back positive there maybe somethings you can try. I believe there are people on this board doing IVIG and plasmatherisi(sp?) experamentally for this. Either way it would be nice to rule things out or in.

Anyway Good Luck!!!

[Maxine]

Fortunately Dr. Grubb is right near my house, so I only trevel 1/2 mile to see him. However, I still wait just like everyone else....about a year between visits.

I've been to the Cleveland Clinic several times though. Some good expereinces, and some bad. The Bad is mostly related to my spine instability, and the good is related to going to their gastroenterology dept.

Autonomic Nervous System (ANS) Dysfunction is much more complicated then weather you faint or not. Fainting is just a small part of it, and many of us don't faint at all, but are still very disabled by our symptoms. A lot of us have many heart related symptoms also, and reach near syncope all the time. It almost seems like they have a certain agenda, and if we don't fit, then the interest isn't there unless they have something to gain by it also. they need to understand that the tilt table testing is just one of the tests that help determine ANS dysfunction.

The ANS isn't an easy thing to figure out, and the follow up care is pretty sparse. I guess we're not big enough cash cows to generate the revenue the medical profession is looking for. Hmmmmmmm........

Maxine :0)