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Bluebonnet08

"Outgrowing" Pots?

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I saw a cardiologist today who said that I might 'outgrow' Pots.  I haven't heard this before.  I am currently 34 & have had it for 12 years.  She said she rarely saw it in people over 40 or that it typically improved a lot by then?  Has anyone else found this to be true?

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My doctor said the same but I didn't quite understand his explanation of it. I'm 28 and have had it for 12 years (only newly diagnosed with a hyper form of dysautonomia) and he said sometimes people can 'grow out' of that because as we age, things slow down? I'm not putting much stock or hope in that theory though... 

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Sorry - I got the worst symptoms at 42 and am now 51 with no end in sight. My mother and sisters also have it ( thankfully not as severe ) and they all got it during menopause. I have however met people who would get it bad during pregnancy and then improved after. I hope the latter is the case for you 

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I developed it at 52 and have been disabled ever since.  My neurologist said they see patients from 8-90 with peak diagnosis around puberty and menopause.  Obviously hormones, including during pregnancy are involved somehow.  She said sometimes people that develop it early in life do get better but those that develop it older tend Not to improve as much. I have heard that it can improve after pregnancy but I suspect until they find a cause it never really goes away.

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Your cardiologist is discussing mythology. Supposedly teens could outgrow POTS, but they can't and none of us can. However, remission is possible. For your whole life you can swing in and out of symptoms.

Please refer your cardiologist to DINET's survey where it shows, out of over 200 respondents, that less than 2% get better.  You can also print out the survey and use a highlighter throughout to show anything similar to your experiences and bring that to your doctor. You are not alone!

The survey is in PDF form. 

 

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My symptoms were worst with pregnancy and post partum.  For about 7 yrs following that I would have relapses that were sometimes quite severe and disabling but the severe symptoms only would last about a week.  I would not say POTS went away after that, however.  I still have elevated hr on standing some days (maybe not meeting the POTS definition but IMO not a normal response).  I still have intolerance to exercise, dizziness and other mild symptoms that tend to crop up most obviously around my period.

My specialist told me that the typical patient takes 4 years to "recover" from severe POTS.  But this does not mean to entirely normal function--from what I understand--just no longer disabled.  There are complicated cases of course and it is really hard to generalize.  Still not enough is understood unfortunately. 

I have heard that very young patients (eg teens) can experience a full recovery.  The younger a patient the more likely a full recovery from what I have read.

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I had autonomic dysfunction after EBV in 1984, but the POTS symptoms appeared in 2007. I think some people can manage the symptoms through diet, exercise, relaxation and lifestyle changes but I haven't heard of anyone being fully cured without making the changes and maintaining them. Even then they still get flare-ups. 

My cardiologist says younger people respond better to meds, exercise, compressions stocking, raising the head of the bed, lots of fluids and salt etc. He said he finds less success with people with EDS and if you are older.

I have heard of the hormone link and now that I have a pituitary tumour, I am more aware of what hormones can do to the body. I get the idea of POTS coming on when hormones are raging during pregnancy and adolescence. Years ago when I was diagnosed with ME/CFS (now I know it is autonomic dysfunction/POTS, EDS and Mast Cell) I had heard of many women who had developed ME/CFS after pregnancy while others found they were well during pregnancy and it flared again after the birth of their child. Personally, for me, my hormones went haywire after the Epstein Barr Virus and I had all sorts of hormone-related issues. Now with the tumour I have three hormone-related meds to make up for deficiencies or excesses. 

I would certainly look into Ehlers-Danlos type 3 and Mast Cell Activation/Histamine Intolerance as there is a link and it's taken me over 50 years to find out the link. 

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This forum would tend to have people who are still sick, so I'm not sure it's an accurate representation of everyone with dysautonomia.  The studies show people who develop it in childhood do improve.  If you got it in your 20s that doesn't count as childhood.  I've had POTS for 14 years and became much better after 3-4 years.  I still get symptoms, am not climbing any mountains but can live a full life.  Many people get better enough to function and leave the forum.

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11 hours ago, yogini said:

This forum would tend to have people who are still sick, so I'm not sure it's an accurate representation of everyone with dysautonomia.  The studies show people who develop it in childhood do improve.  If you got it in your 20s that doesn't count as childhood.  I've had POTS for 14 years and became much better after 3-4 years.  I still get symptoms, am not climbing any mountains but can live a full life.  Many people get better enough to function and leave the forum.

I am pleased to hear that you have had some good improvement, but I've yet to hear of any adult being completely cured of POTS, even ones who are living very full lives. I have noted that Deliciously Ella (Ella Woodward (Mills)), who has worked hard on her lifestyle enough to run a successful company in the UK, still has relapses when she gets stressed, tired and hasn't had time to exercise. I think for most people it is down to good management. 

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Thanks for all of your replies!  I had never heard of people "outgrowing" it, except in some cases where it developed in childhood.  I wish it was the case, but sadly, I feel like it is dismissive of doctors to say that.  I would like to see some research or proof of that.  I guess it would depend on the "root cause" of the POTS.  I know there are many.  Maybe in some cases the root cause can be treated and "recovery" or "remission" can be achieved.  I do think hormones play a role as well.  Maybe one day we will unravel more about this disease.  Thanks for your input. 

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On 4/10/2018 at 4:56 PM, Bluebonnet08 said:

I saw a cardiologist today who said that I might 'outgrow' Pots.  I haven't heard this before.  I am currently 34 & have had it for 12 years.  She said she rarely saw it in people over 40 or that it typically improved a lot by then?  Has anyone else found this to be true?

Well, I was told that also.   Currently 42,  I have seen improvement in some symptoms.   I also have some new issues.   Can't win.    Now, instead of Tachycardia issues all the time, I'm Bradycardic also.   It's up and down all day.   How do you fix this?   Afraid to take my meds because I don't want my heart rate lower.

 

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8 hours ago, Bluebonnet08 said:

Thanks for all of your replies!  I had never heard of people "outgrowing" it, except in some cases where it developed in childhood.  I wish it was the case, but sadly, I feel like it is dismissive of doctors to say that.  I would like to see some research or proof of that.  I guess it would depend on the "root cause" of the POTS.  I know there are many.  Maybe in some cases the root cause can be treated and "recovery" or "remission" can be achieved.  I do think hormones play a role as well.  Maybe one day we will unravel more about this disease.  Thanks for your input. 

There is research showing recovery which you can find on google.

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I've heard this too. The way it was explained to me was that POTS often has a big component of low blood pressure, hence the salt as a main treatment. And as people age they tend to get higher blood pressure. So for some POTsies it can even things out. Certainly not the case for everyone, but not impossible or even implausible for some. I don't think there's any harm in saying it's possible, so long as the symptoms you have now are still being treated and taken seriously and research is not halted. 

I certainly know people who, when I describe POTS, will say something along the lines of "oh, that used to happen to me when I was a kid." And maybe a lot of the people who grow out of it never get officially diagnosed. I know I didn't get a diagnosis until I was 25, and hear similar stories from many others. 

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I think adolescents who develop it during a growth spurt do tend to get better, but can't see myself "growing out" of it given I developed it at 34. In real life from what I have read and learned I don't think it is common for adults to recover fully, although if a successful treatment combination is found I believe quality of life can be improved. I think a lot depends on underlying pathology. People whose main problem tends to be low blood pressure may find they improve with age though as blood pressure tends to rise with age.  I have a diagnosis of HEDS but I would never have been diagnosed with this if not for POTS as for me the musculoskeletal and surgical complications are mild and by no means disabling, and I don't personally believe in my case EDS is the cause as poor collagen is congenital yet I developed POTS extremely suddenly. I believe my cause is volume depletion of endocrine origin as I produce no renin, aldosterone or ADH. 

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@bombsh3ll- I agree that alot depends on underlying pathology in terms of treatment and even potential "recovery".  I had some features of HEDS as well, but was not diagnosed with it.  Like you, I was fine for 22 years and then developed POTS suddenly.  The EDS specialist that I saw said that people with EDS will have symptoms for their entire life.  How did you develop POTS suddenly if you don't mind me asking?  For me, it started after I started a birth control pill and got a horrible case of food poisoning.  I wish it would stop just as suddenly, but it doesn't seem to be the case.  

Thanks for all the input.. so maybe some people can improve depending on etiology of the condition?  It is my biggest hope that I will at least have improvements over time.  

 

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Sorry to hijack!

 

Ah! You have EDS, too. I was healthy until Epstein Barr gave me glandular fever. I then got ill with autonomic problems and fatigue. Then I seemed to improve a lot, but 20 years later developed POTS and Small Fibre Neuropathy. I have Mast Cell issues, too. 

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I was diagnosed in my mid 40s and the dr traced my medical history to conclude I had my first symptoms aged 7.  My son was diagnosed yesterday, aged 14 and has has symptoms since he was 11.  We have HSD (one point off the new criteria for HEDS) and have been told it will be a case of management, rather than ‘cure’ for us, because of the underlying cause.

I have been on Ivabradine for a couple of years now and it has helped a lot, but loses efficacy if I am ill or have a massive amount of stress to deal with.  Over the years, the best times for me, symptomatically, have been when I was able to get and stay fit for a while, as obviously increase in muscle mass and skeletal pump effectiveness is always going to help people with an HCTD.  Unfortunately, as you will probably know, it’s not that easy to stay fit all the time when your connective tissue has other ideas or you are too symptomatic to even begin building your fitness effectively (like my son at the moment).  

 

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On 4/16/2018 at 5:50 PM, Bluebonnet08 said:

How did you develop POTS suddenly if you don't mind me asking?

This sounds ridiculous but it was a very forceful valsalva that triggered my POTS. I have two children & one day my dad came in with one balloon. I knew they wouldn't share so went and got what I thought was another balloon from the drawer and tried to blow it up. I blew SO HARD as my kids were screaming and fighting, I just wanted a balloon for each of them to keep the peace. Blowing so hard I passed out. At first I wasn't too worried, it is common for people to faint after straining hard. I lay on the floor, waiting to come around properly and the lightheadedness to go.  It didn't so we called an ambulance. It never has gone away, and I haven't been able to stand for more than a couple of minutes since. It was 5pm on Monday, 4th August 2014. I remember the time on the oven clock as I lay on the floor. My life was taken away from me that day. It turned out what I thought was a balloon was actually a water bomb and I would never have been able to blow it up. I was a completely healthy 34 year old before that day. How I wish I hadn't tried to blow that thing up. I will never know if I would have developed POTS gradually or some other way had that not happened, but that's my story. 

I found POTS googling my symptoms in the few days after becoming unwell. My HR did the same thing standing. It took me 3.5 years after that to get a formal diagnosis though, and after that I saw a genetecist as I and other family members have some features of HEDS, so that was where I got that diagnosis. The musculoskeletal and previous surgical complications of HEDS are trivial for me though and I would never have sought a diagnosis of this if I didn't have POTS. I mostly pursued the EDS diagnosis in order to support my disability claim as POTS in this context doesn't go away, and although deep down I do not believe my POTS is secondary to this, it means I am recognized as having a permanent condition rather than something that might go away which is what people can be told if they have no other diagnosis, even though the evidence for it going away is scant. 

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On 4/12/2018 at 12:11 PM, Bluebonnet08 said:

Thanks for all of your replies!  I had never heard of people "outgrowing" it, except in some cases where it developed in childhood.  I wish it was the case, but sadly, I feel like it is dismissive of doctors to say that.  I would like to see some research or proof of that.  I guess it would depend on the "root cause" of the POTS.  I know there are many.  Maybe in some cases the root cause can be treated and "recovery" or "remission" can be achieved.  I do think hormones play a role as well.  Maybe one day we will unravel more about this disease.  Thanks for your input. 

Hormonal? hmmm. I developed symptoms well past my child-bearing ages. Many of us did. It's not a disease found only in women of child bearing age. Over 30% are diagnosed post menopausal. Doctors need to look at a wider spectrum of women, not just a wider spectrum of symptoms. 

 

 

 

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I have a friend who is about 65 and she had a terrible time in her teens with passing out.  She would be in class, at a restaurant, you name it, no place was safe.  As she's gotten older she doesn't have that problem.  She has been diagnosed with fibromyalgia, and has survived breast cancer.  I would bet a lot of money that she has EDS as well, although she's never been diagnosed.  Her daughter has a lot of GI issues and would highly suspect EDS in her, a sister has fibromyalgia and POTS, as well as a niece who has POTS (would suspect EDS in her also).  That being said, she didn't do anything in particular to make it go away it just went away.  I don't think, however, that you "outgrow" it.  Like someone earlier said, maybe it just goes into remission. 

As for my daughters, their POTS is being controlled, but I don't think they will ever "outgrow" it.  Doctors who say that usually don't have that much experience with POTS, they are just going by what they've read in textbooks or articles.  We are all far from textbooks!

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