SeattleRain Posted January 15, 2013 Report Share Posted January 15, 2013 Hi Everyone,I saw an arrhythmia specialist today that I was referred to by my new cardiologist (He's his partner that handles the TTT's) and have a TTT scheduled for Wednesday. Unfortunately, he was extremely skeptical about my symptoms and if I fit into the "POTS" diagnosis. It didn't help that he implied POTS doctors and POTS centers around the country exist to treat patients for the sake of making money/having a practice. He told me my symptoms have an autonomic dysfunction "flavor" but that POTS patients experience fainting. Since I don't faint, I can't really have POTS. I disagreed with him and referenced the Grubbs article defining POTS as an increase of 30bpm after 10 minutes (sustained) or 130bpm or more increase. He kind of disregarded it. He told me that he thinks the TTT will probably come back normal and when that happens he's going to have to say I'm fine. I'm crossing my fingers and eating a lot of carrot cake hoping he's wrong.How many people here have had a QSART test? He didn't know what that was. Luckily, he does the TTT for 45+ minutes (heard some do it for only 5). I don't think they'll be pulling adrenaline/cortisone levels though. Any advice is appreciated. Thanks for listening to my rant! Quote Link to comment Share on other sites More sharing options...
Chaos Posted January 15, 2013 Report Share Posted January 15, 2013 I've had the Qsart done twice. Abnormal both times. My local cardiologist didn't know what it was either. Even though I went to Cleveland Clinic and was diagnosed with POTS/NMH/autonomic neuropathy/low blood volume/low red cell mass, my local doc disregarded it all because he didn't like the way the reports came back. ("too disorganized", "don't know what all this means") My local cardiology chart STILL says that my work up at Cleveland Clinic was normal even though I gave him all the records saying that it wasn't. Then I went to Mayo and had the exact same diagnoses come back. My cardio has noted that Mayo came up with these diagnoses. I guess he could understand the results the way they presented them. Sorry you're having to go in with this kind of pressure. It's nerve wracking enough to do the test when we are worried about it ourselves, without an arrogant doctor making it worse! Quote Link to comment Share on other sites More sharing options...
FarmerAmy Posted January 15, 2013 Report Share Posted January 15, 2013 I have learned not to fight unhelpful doctors--just fire them! I think you will absolutely find doctors who are unable/unwilling to work with POTS patients. I think the best thing to do is to move on and try to find a more helpful doctor. There's no point in wasting your time and money on a doctor who doesn't believe you.Good luck!Amy Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 15, 2013 Report Share Posted January 15, 2013 Hi Seattle,wow, that's quite a lot to 'digest' there.I thought Dr Grubb is one of the most respected authorities in POTS, yet your cardiologist chose to disregard his article...hmm can you maybe find yourself another dr?I never had a QSART test. I did get diagnosed with POTS via TTT, and I did have my catecholamines checked laying down and standing during the test. I don't faint, and I'm sure you'll hear from a bunch of other POTS-ies that they don't faint either. To the best of my knowledge, the 30+ bpm increase in HR or a sustained HR of 120+ bpm are THE criteria for POTS. The fainting is either a neurocardiogenic or a vasovagal syncope and (I hope I'm not wrong here) that is a separate condition. Some people can have both POTS and fainting, but you can have one without the other, they are not inseparable.There are a few things I dare suggest for the test - make sure you have someone to drive you back home after the test (particularly if you expect you're going to be symptomatic), also make sure you hydrate properly after the test (the atropine I was given during the test - dried me out - my eyes, my throat, my mouth felt so dry afterwards - you might get a different version of the test though). Also, you might want to request that they provide you with a detailed copy of the results for your records.Keeping my fingers crossed for you on Wed. It's not a 'fun' test, but I hope you get the much needed confirmation of your symptoms and a treatment plan that will help you get better.Best of luck,Alex Quote Link to comment Share on other sites More sharing options...
Altruism Posted January 15, 2013 Report Share Posted January 15, 2013 What are the odds!SeattleRain, I'm having a TTT on Wednesday and I live in Seattle too. Might see you at the EEG lab lolI had the other autonomic tests done in December, but they were "inconclusive", because I was unable to do the TTT due to the severity of my symptoms. Now I was told by my neuro that I HAVE to do the TTT and I dread it. Am I going to necessarily faint? Do they keep you up until you pass out, can I say ""Stop it now"? What does it feel like to go from supine to standing position while being all strapped up? I'm terrified, but it's the only way to get a final diagnosis.Good luck, SeattleRain! Quote Link to comment Share on other sites More sharing options...
corina Posted January 15, 2013 Report Share Posted January 15, 2013 Best of luck to both of you Seattle and Altruism! Quote Link to comment Share on other sites More sharing options...
badhbt Posted January 15, 2013 Report Share Posted January 15, 2013 Seattle Rain and Altruism,Can I ask which lab you are doing the TTT at? I also am in Seattle. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 15, 2013 Report Share Posted January 15, 2013 Altruism,no, you don't have to faint, but if it happens, I suggest you let the technicians/drs with you know how you feel and try not to 'fight it'. I was kept up for 10 min - 1st time around I fainted (even though I don't normally faint) after a couple of min, the 2nd time around, 6 mo later, I didn't even show signs of POTS anymore, let alone faint ...go figure, but I was on a bunch of meds.To be honest I didn't really feel anything special when being tilted while strapped to the table. It was quite similar to getting out of bed first thing in the morning, but everyone is different.Also, to the best of my knowledge a neuro TTT is different than a cardio one (sort of speaking), but I may be wrong here. One thing I do know though, the protocol for the test varies slightly depending on the facility where you have it done. And, yes Altruism, it is quite scary, but keep in mind that you have all those people around you that are trained and know what to do in case things 'go south'. Plus, you need the test in order to be properly diagnosed....unfortunately. Best of luck to all 3 of you and let us know how it went. If I could do it, then you guys most definitely can.Alex Quote Link to comment Share on other sites More sharing options...
Altruism Posted January 15, 2013 Report Share Posted January 15, 2013 Alex, thanks for your support and all the detailed explanations! I'm a little less nervous about it now, plus, I keep myself busy today with a stand up cervical spine MRI :S what a fun week!SeattleRain, at UW Neurology clinic you can have QSART, controlled breathing, Valsalva and TTT. I had all but the TTT in December. QSART rules out or confirms authonomic neuropathy. Controlled breathing is ok, Valsalva was quite difficult for me as I have an exaggerted BP response in phase 4 - BP was 190/120. Let me know if you need more details about the locaton of the lab, the procedures, etc!badhbt, dr Thyerlei is sending me back for a TTT to the UW neurology clinic. She wants to rule out pregnancy deconditioning, anxiety and wants to know what the heck is going on with my BP, as It cannot be detected when standing, even with professional blood pressure cuffs. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted January 18, 2013 Report Share Posted January 18, 2013 I see a lot of people in this post are from Seattle. How weird, ill be moving there In six months to see doctors at the university of washingtons dysautonomic testing center. They do the qsart test and help refer you to other specialist. its why I'm moving to seattle. Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted January 18, 2013 Report Share Posted January 18, 2013 And seattle rain, that's bogus about the fainting part because Ive never fainted but I definitely have pots. I cannot stand when doctors do that. try going to the university of Washington. We should all start a support group and we can lay down during it Quote Link to comment Share on other sites More sharing options...
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