Poorer Prognosis? Really, Wikipedia, Really?!

[Altruism]

According to Wikipedia:

Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis

and

Adults who develop POTS, especially women during or after pregnancy, usually see milder improvement and can be plagued with their condition for life[citation needed].

I really need to know where the research comes from? Is it true that pregnancy and postpartum POTS has poor prognosis? Why is that? Isn't childbirth considered a trauma? And I think trauma-onset aka sudden onset POTS has a good recovery prognosis (can't find the link now)?

Are there women with pregnancy and postpartum -induced POTS who saw improvement, completely or partially recovered? Could you please chime in? I need more examples and hope!

Are there women on Dinet who developed POTS and have EDS too? If yes, have they seen any improvement?

If I find enough examples I'll go ahead and try to change the wiki page. Let's prove them wrong, we all need hope and accurate information!

If someone has seen a case study, research or article that proves Wikipedia is right, please do share it with us. Thanks!

[Katybug]

I don't have a case study for you. I do have POTS and EDS and MCAD and I have had only marginal improvement. But what I think is important to keep in mind is that most people who have had significant improvement aren't using this site anymore...they're out living their life.

[UnderwaterThing]

It's funny that you posted this because I have always wondered about that statement on Wikipedia as well. My symptoms began when I got off of birth control after being on it for 12 years, which is as much of a hormonal change as a preganancy. I had other factors as well (neck injuries, genetics) but the hormone change was the catalyst. I have asked the specialists at Stanford about hormomes and dysautonomia. Dr. Friday agreed that hormones can definitely be a factor with POTS and dysautonomia. I would also love to see the research Wikipedia used.

[Mytwogirlsrox]

I was diagnosed after two horrible pregnancies last year. I no longer fit pots criteria, so I would say yes, I have improved. I still have some symptoms -- mild OH and a bit of anxiety though

[corina]

As I'm sure you know Wikipedia isn't necessarily based upon scientifically proved articles. If I were you I'd start searching through what is proven to be fact first! or ask here, I think there are more members who (partially) improved!

[Monstrosity]

I've learned to take what I read about our conditions with a grain of salt. The medical world dosent have a good grasp on our "syndrome" in my eyes. Dysautonomia can be caused by a lot of things. Finding what caused it and treating that is key. Not to mention Wiki can have some unreliable info on it. You never know who's writing that stuff. Like I said I'd take that with a grain of salt....

[SeattleRain]

As I'm sure you know Wikipedia isn't necessarily based upon scientifically proved articles. If I were you I'd start searching through what is proven to be fact first! or ask here, I think there are more members who (partially) improved!

Right. Anyone on the internet can click on the "edit" link and add something into the page. It says "citation needed" because it's not referencing any article. Wikipedia can be a great source of information but this would be a good example of it not being the best source of information.

[MomtoGiuliana]

I've see that before on Wikipedia--in fact I think someone has brought it to the attention of the forum in the past too. I would definitely not put faith in statements not backed by peer-reviewed research (eg medical journal articles). I am not aware of studies that found that women who developed POTS during pregnancy or post partum have a poorer prognosis. Anyway I am living proof this is not always the case. From all the people I have seen come and go over the years on the forum I have not seen this trend, either. What I have seen is some women who feel best when either pregnant or breastfeeding seem to have worsened symptoms when they are not.

[lillybits]

I have eds, mcad and multiple other things I didn't get as bad as I am now until my youngest was 2 . I feel a little better since we moved back to Arizona from Wisconsin. But still nothing like I was before. I miss being able to tire out my kids. Now I tire out walking across the house

[Altruism]

I knew it! Thanks for confirming what I thought, guys. It's really discouraging to read something like this and the worst part is that many pages copy-paste info from Wikipedia, so we end up having a chain of wrong statements creeping up online and scaring us - the patients.

SeattleRain, I know everyone can make a change. I am considering doing it myself. Or I'll mark the article as lacking objectivity.

[Relax86]

I got better....I think I'm calling my improvement 90-90% these days. I occasionally have an off day where I'm aware of symptoms but nothing that stops me in my tracks (like this time last January). Last night I was in bed by 8pm I do require rest when my body says so, I have made some changes in diet, hydration etc....things that I figured out in this last year that my body needed. I mentally get susceptible to worrying about POTs returning and that puts a damper on my recovery. But don't give up ~ it can happen.

[peregrine]

I think part of it is that they are comparing to kids who have POTS, many (but not all!) of whom seem to recover once they become adults. So - if you put it that way - us adult POTSies do have a poorer prognosis, since we don't tend to recover the way the younger set do. I personally don't feel that "poorer prognosis" is the right term - it's not like most folks' POTS is progressive or anything - more "tend to continue having POTS rather than recovering as many adolescents do" or somesuch would be better.

edited - I do believe the scientific literature discusses the kids-vs-adults difference in POTS duration/recovery, but too tired right now to dig up citations :^)