New Study On Prognosis

[firewatcher]

Mayo Clin Proc. 2012 Jul 13. [Epub ahead of print]

A Prospective, 1-Year Follow-up Study of Postural Tachycardia Syndrome.

Kimpinski K, Figueroa JJ, Singer W, Sletten DM, Iodice V, Sandroni P, Fischer PR, Opfer-Gehrking TL, Gehrking JA, Low PA.

Source

Department of Clinical Neurological Sciences, University Hospital, University of Western Ontario, London, Ontario, Canada.

Abstract

OBJECTIVE:

To prospectively evaluate patients who met standard criteria for postural tachycardia syndrome (POTS), at baseline and 1-year follow-up, using standard clinical and laboratory methods to assess autonomic function.

METHODS:

Fifty-eight patients met the study criteria (orthostatic symptoms and a heart rate increment of ≥30 beats/min on head-up tilt) and completed 12 months of follow-up. All patients were enrolled and completed the study from January 16, 2006, through April 15, 2009. Patients underwent standardized autonomic testing, including head-up tilt, clinical assessment, and validated questionnaires designed to determine the severity of autonomic symptoms.

RESULTS:

Patients were predominantly young females (n=49, 84%), with 20 patients (34%) reporting an antecedent viral infection before onset of symptoms. More than one-third (37%) no longer fulfilled tilt criteria for POTS on follow-up, although heart rate increment on head-up tilt did not differ significantly at 1 year (33.8±15.1 beats/min) compared with baseline (37.8±14.6 beats/min) for the entire cohort. Orthostatic symptoms improved in most patients. Autonomic dysfunction was mild as defined by a Composite Autonomic Severity Score of 3 or less in 55 patients (95%) at baseline and 48 patients (92%) at 1 year.

CONCLUSION:

To our knowledge, this is the first prospective study of the clinical outcomes of patients with POTS. Orthostatic symptoms improved in our patients, with more than one-third of patients no longer fulfilling tilt criteria for POTS, although the overall group change in heart rate increment was modest. Our data are in keeping with a relatively favorable prognosis in most patients with POTS.

Copyright © 2012 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved. PMID: 22795533 [PubMed - as supplied by publisher]

[Guest headhunter030]

Wow---sounds a little too good to be true. They key may be the virus cause; I think alot of us on here were destined for it.

[HopeSprings]

I don't know whether to be happy or to cry. So many of us have not improved, many of us feel our illness is progressing. Also, were these patients on medication at follow up? - they didn't say. And what about this - "heart rate increment on head-up tilt did not differ significantly at 1 year (33.8±15.1 beats/min) compared with baseline (37.8±14.6 beats/min) for the entire cohort." That doesn't sound like improvement. However, these are real POTS patients and if they say they're doing better, I certainly believe them. I do worry when a study like this comes out that Doctors will read it and think POTS is no big deal and will just go away in time.

[hippychic258]

My question is: How severe where the patients symptoms when they started the study? If I would of been in the study when I was diagnosed 3 years ago my results would of been the same as the patients in the study, I thought it was gone, but I am now bedridden and have been for 5 months. That is a very vague study, but at least its a study.

[jangle]

Ok, well this doesn't really help me much, I'm 7 years into this. In fact this hurts me because it indirectly affects funding impressions for future research when an illness is thought to go away on its own.

[roxie]

I don't know how I feel about this one.

I want to be encouraged by it becaue it is wonderful people get better. However, doesn't it seem like they are blanketing POTS?.

They don't say anything about meds or lifestyle changes used, if they improved on their own, or if they had any other things that comes along/can cause POTS.

Does anyone feel like they should have a better diagnostic criteria for POTS? I know my hr can go up over 100 points in the 10 mins & that's a pretty significant difference than 30. Like if they could score it grade one - 30bpm, grade two- 50 bmp. Or something like that.

[brethor9]

They didn't say anything about age either; it is known that younger patients diagnosed with POTS fare better then patients who are older and have a more gradual onset. Also my autonomic dysfunction and orthostatic intolerance are far more severe than my POTS. Are these patients just diagnosed with POTS or any secondary issues? its very vague......

[sue1234]

This is another study that leaves alot of us here saying, "what???". We talk to each other day in and day out, and we see very few on here that actually say, "hey, I'm alot better and can now function!". What we mostly do is find a med that helps us get through the day, but I don't see many people here getting "well" with time. Yep, these kinds of studies will surely diminish the importance of figuring out how to help us.

[Guest Alex]

Here is the link to the full text article.

http://download.journals.elsevierhealth.com/pdfs/journals/0025-6196/PIIS0025619612004697.pdf

It does give lots of details about the patients gender, age, symptoms, medications etc at baseline and after 1 year.

"Most patients were female and young (27.4+/-10.9 years of age). Patients were symptomatic with the disorder for a mean of 3.4 years, 14 (24%) of patients had a history of remote orthostatic intolerance or syncope before the onset of persistent symptoms, and 4 (7%) of patients had a family history of orthostatic intolerance. The onset of symptoms was acute (maximal in _1 month), subacute (maximal in 1-3 months), and insidious (maximal in _3 months) in 20 (34%), 14 (24%), and 29 (34%) of patients, respectively. A total of 20 (35%) of patients reported an antecedent viral infection before symptoms.

Twenty (35%) patients were taking beta-blockers at baseline (metoprolol was used most, followed by propranolol, atenolol, and nadolol) and 28 (54%) at 1 year. Ten (17%) patients took midodrine at baseline and 11 (21%) at 1 year. Fourteen (24%) took fludrocortisone at baseline and 8 (15%) at 1 year. One (2%) took pyridostigmine at baseline and 8 (15%) at 1 year. The dosages were not significantly different at 1 year when compared with those at baseline."

The numbers look quite interesting. I wonder if they truly reflect the "overall" reality, as there are so many on this forum that have been plagued with this for so many years who are still searching for answers. Plus who knows exactly how many undiagnosed POTS/dysautonomia patients are there in countries where the doctors have never heard of POTS... or even here in the States.

On a side note I recently had (6 months after being diagnosed with POTS) a repeat tilt table test. Surprise, surprise, I no longer fit the criteria for POTS. It so happened that the day of my TTT was a "good day" for me. The thing is - I am heavily medicated (in my opinion) and I don't exactly feel like I've made a lot of progress. I admit, I am no longer bedridden, but I still find myself to be housebound because I can feel fine for now, and 5 minutes later I can be a wreck. I can not exercise as exercise makes my heart rate go through the roof, I still need a lot of rest, and so on ...but I can at least enjoy some "normalcy" every now and then.

I guess the truth is out there.

Alex

[Relax86]

I also no longer fit the criterial for POTS at 7 months out. My symptoms are less without a doubt but also my ability to tolerate them is also so much better. I push through a lot. But the bottom line is I rarely ever feel like me. So yeah, I say I'm better at month 7 but am I really that much better or did I beat the anxiety component to be able to push through a day? I still have low BP which I successfully medicate. R ear pain, facial pain, and neck pain...sometimes my R facial muscles are weak, some days my veins pop out in my right hand and the hand feels like it's burning or weak, occasionally the left. I have R or L headaches, somedays I'm too cold, can't digest my food, have blurred vision and less often tachy. But systems are NOT working and I have no plan but to keep on keeping on. But yeah, at 7 months I've resumed a more functional life despite dysautonomia.

[roxie]

Relax86, I was telling my mom that the other day. Its one thing to get through activites and another thing to get through them well and feel well before, druring, and after.

Ppl seem quick to say just bc you do one thing you"re better when they never see the aftermath

[Relax86]

@Bananas -Very true. I went to the Zac Brown Band concert this weekend. I am very grateful that I am well enough at this point to even schedule and attempt to go. I would never have dared to think I could accomplish it 5 or 6 months ago. But going to a concert entails these details: will I tolerate the heat? the noise? the possible smell of folks getting high? will I be able to walk from the parking lot? sit in my chair, get myself to the bathroom if/when needed? My husband drove me when our friends took a party bus because I wasn't sure that I can last for a late night at this point. I know there are easily 100 people on this forum who would love to feel well enough to even attempt to enjoy a concert and I did have fun. But there's a certain amount of fun that's spoiled by having to be affected by these elements all the while pretending you're not affected and being told by friends you haven't seen in a while the classic line of " you don't look sick at all ". My point being I am better, but I just wonder if I'm accepting most of the symptoms. Thanks to all on here who understand each others frustrations with our limitations. Thanks Bananas.

[Birdlady]

Thanks for posting the link to the full article.

Ugh studies like this make me sad only because I know I'm so far past this.

[Mytwogirlsrox]

Relax-- did you love Zac BB? I saw him a couple months ago in San Diego!! They were amazing

[ramakentesh]

I would have satisfied the improved criteria a year after every one of my relapses except the third one (which took 14 months to get over) but unfortunately it comes back in my case

[issie]

At least some have a break between flares. Some of us never get a break and it's chronic.

Issie

[brethor9]

yeah I hear you on that one Issie a remission for me is a couple of hours but honestly I am never symptom free

Bren

[HyperPOTS8]

Perhaps this is why I was told by Mayo neuro I have "presumed brainstem dysregulation causing a hyperadrenergic state" and "disorder of the autonomic nervous syndrome" rather than "POTS" even though my TTT is c/w POTS. I know that is also true for another forum member who recently saw one of the Mayo neurologists.

[Mytwogirlsrox]

I want to be one of the 30%