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maggie

Opinion On How Many Actually Get Better

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I was just on another site in regards to pots and that person wrote they believe most people with pots get better. To my knowledge there hasn't been any study done on this question. What are your thoughts in regards to this topic. Do you believe most patients who get pots have a complete recovery or just improve?

Maggie

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Guest tearose

We don't have exact numbers but I believe we learn to become masters at managing and making the best of a difficult syndrome/dysfunction.

I think of the one hundred active members I have known here over six years, maybe 25% improved, 25% worsened and 50% are able to find a management/treatment plan that has given them some level of function back.

Mine has been more like a relapsing and remitting progression. I am worse than I was when I first started having symptoms. I am unable to work. I think it all depends on what was the original first cause and how quickly you were able to treat and find a management plan.

Also, we have to remember that some people have other body systems that may have challenges so this changes the whole statistics I suppose as well.

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It seems to be the prevailing medical opinion that the vast majority of people with this condition improve--at least to the point that they are no longer disabled. My specialist told me the "average time to recovery" (did not define recovery tho) is 4 years. He said I recovered faster than average. However, I still have relapses, I am not over this condition. I am greatly, greatly improved however.

I don't believe there are yet any long term studies on POTS so I think the answer is still somewhat unknown. However, there are doctors with a good bit of experience now treating patients and they have a sense of how the condition tends to progress.

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I can't even tell where I am at because my anxiety is so bad.

Part of me thinks if I could get over it maybe some of my problems would be solved but I am just a mess right now and I think 3/4 of it is nerves.

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I first got sick with POTS in 10/06, so I guess I'm officially at 4 years now! My symptoms slowly worsened over the first 2 and 1/2 years, but have stabilized with treatment. Earlier this summer, I thought that I was improving a bit but I've flared up again since then. I guess I'm not getting worse, but I'm still not getting better and am unable to work. Mayo said my POTS was probably triggered by having mono in 6/06 at the age of 32. My main symptoms are burning skin pain, body aches, fatigue, BP/HR issues, chest pain, fatigue, and abdominal pain/nausea.

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My opinion is that there probably isn't a 100% recovery (though I definitely wish there was). I have to agree with Tearose that there are remissions and relapses. I myself have experienced this. I wasn't dx until this year, but all of my symptoms have been the same for almost 10 years now. I had symptoms everyday for 5 years, then nothing but maybe 15-20 "episodes" that just lasted a day or two for almost 4 years, and now this year I am pretty much back to where I began.

I definitely believe that everyone is different, and what works for one probably won't work for another. I have personally only met, in person, one other girl with this and she is a few years older than me. And she told me that even though something may work for you now, doesn't mean it will work 2 years down the road. She explained that she has been switching meds recently because what they found to work for her a few years ago is no longer working.

I am optimistic though that one day all of these dysautonomia specialists will come together and figure something out for all of us :) Wouldn't that be awesome?! :)

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Dr. Grubb documents that for developmental POTS (which usually starts in girls at age 14), that the recovery rate is 80% by the time they are in their mid 20's.

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I did more research on this topic and on Mayo's sight it states that 90% of pots patients recover. On Vanderbuilt's sight it also suggests that most pots patients also recover. While reading these two sights they stated that they estimate there are 500,000 cases of some type of dysautonomia. I think the count of users on this site is around 14,000 total. Are most of us on this site the 10% that don't recover? Just some thoughts I would ad to this forum.

Maggie

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I don't see how Mayo and Vandy can make claims about 90% recovery. First of all, there are many varying reasons why people have dysautonomia. We are learning that some here came down with it after a virus, some have come down with it possibly due to mechanical or metabolic reasons, and some have gotten it due to genetics. The ONLY category that has a shot at spontaneous recovery is the one that got it due to a virus or illness. If you've had it all your life due to genetics, then you most likely will have it the rest of your life, and manage its symptoms as best you can with what meds are available. Then there are the rest of us with unknown causes, but can be mechanical or metabolic, and as soon as some knowledgable research team wants to take that group on, then maybe we will really have more dysautonomia people recover.

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I did more research on this topic and on Mayo's sight it states that 90% of pots patients recover. On Vanderbuilt's sight it also suggests that most pots patients also recover. While reading these two sights they stated that they estimate there are 500,000 cases of some type of dysautonomia. I think the count of users on this site is around 14,000 total. Are most of us on this site the 10% that don't recover? Just some thoughts I would ad to this forum.

Maggie

90 percent..Wouldn't that be lovely? I have improved since my diagnosis. But I think there's an important factor in getting better. And that is getting the right help. I feel I could be much better if if only I could find a doctor to treat me. Even though I have a diagnosis, I can not find a doctor who will treat me specifically for POTS. In fact that fight me when I try to get help. They dont' believe what I have to say or information I bring in. I bring in printed info from this site, that I know is never read.

I think the 90 percent improvement rate depends upon, first getting a doctor to diagnose you, and then getting a doctor to treat you. Most of the doctors I've seen never even heard of POTS. It's been impossible for me to find a doctor who will treat me for POTS with the insurance I have. Not really fair when you consider if I had diabetes or another disease I'd have no trouble being treated for that disease. The only reason I was able to get diagnosed was because at that time I was able to put out a few hundred dollars to see a specialist. I can no longer afford to do this. So I can no longer get treated specifically for POTS. And of course that's gong to affect how well I do at getting better.

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Not to bring the topic down, but honestly I'm not that hopeful. I think this illness will be with me my entire life and I first had symptoms at the age of 16. It has been 10 years and I am only getting worse. Those doctors who say recovery, I wonder what's their criteria? If I can't live a normal life, then I would not consider a person recovered. You have to watch out for their definitions of "recovery" because it likely means something totally different than what we would think.

I think we are on our own. The researchers haven't been doing a whole lot in my opinion to get to the bottom of this. All of my POTS doctors are quite honestly useless. If a SSRI, beta blocker, florinef, midodrine and increased salt intake doesn't work they really have no idea what to do with you. You are stuck dealing with symptoms, so I just don't see how Mayo can say a 90% recovery rate. That's pretty unbelievable to me.

I'm sorry I'm not more optimistic, but I see no new approaches coming out of these research facilities.

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Did Mayo list the studies to support this? Were they talking about teenage cases or adult cases or all cases? The only studies I've seen have been on teenagers and 90% is way higher than any recovery number I've seen. If they have studies on cure rates they should have some life span numbers for those of us that don't get better, haven't seen those numbers either.

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I'd love to know now Mayo and Vanderbuilt came to those conclusions. As someone already said, they haven't been studying it that long. 4 years ago when first diagnosed with pots at age 50 - despite having signs and symptoms of it all my life that started to get radically worse about a decade ago - my pots doc said he expected me to have a 'full recovery.' Now, his opinion is 'we just don't know. We don't know enough about it." I think his latest opinion, which he's held for a couple of years, is the right one.

Are the Mayo/vanderbuilt reports stating 'total recovery' up to date or are they more than a few years old? Just wondering.

blue.

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I'm with Todd and Blue on this one - I would need to see published studies on this issue, and to know which sub-groups of people with dysautonomia have been studied, across which ages, for how long and with which treatment options.

I would also want to know how 'recovery' is being defined - as a patient, I might not agree with the definition used. 'Recovery' does not necessarily mean 'cure', and it does not necessarily mean that full functioning has returned.

Dianne

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Long-Term Outlook for Patients

The majority of patients with OI have a relatively mild disorder which improves over succeeding weeks and months. Most patients will eventually be free of symptoms. However, in some patients, the symptoms are more severe, the duration of the illness may be longer, and the expected recovery may not occur. Overall, on follow-up, the majority of patients with OI have improved. More than half of the patients remained on treatment. Those patients with antecedent events, such as a viral infection, appeared to do better overall than those who developed the condition spontaneously. I finally was able to copy and paste the article from the Vanderbuilt site. I'll try and find the one I read from Mayo's and add that one as well.

Maggie

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Stay active to speed recovery:

Get regular physical activity to treat postural orthostatic tachycardia syndrome. The symptoms of POTS make exercising difficult, but it is critical to an effective recovery. A limited amount of moderate exercise, usually in bouts of 15 to 20 minutes per day for two or three days per week, can help to develop greater tolerance to daily activity and promote long-term condition management. Children with POTS usually outgrow the condition when they reach adulthood and staying active can increase the odds of a full recovery and make it happen quicker.

Read more: How to Treat Postural Orthostatic Tachycardia Syndrome (POTS) | eHow.com http://www.ehow.com/how_5590821_treat-orthostatic-tachycardia-syndrome-pots.html#ixzz12ACTaKUY

This is not from Mayo's site but from another stating exercise is the key to a quicker recovery. I'm tired now I'll look for Mayo's later.

Maggie

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I think a big part of this is definition. How is recovery defined? I was told by disability insurance that I was recovered b/c of several bp and hr readings in the doctor's office. We all know that a few vitals readings really tells us very little. I did not feel "recovered" until months after that date. B/c doctors don't live in our bodies they may define recovered as --able to walk, do normal, daily activities, etc. the other confusing element is the relapses. I definitely "recovered" but I do also have relapses. They do not last long, but they can still be rather severe, making me homebound for a day or more.

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Actually, increasing activity was the main treatment advocated by my neurologist at Mayo. Of course, not everyone will respond positively to this treatment! But it certainly did help me. However, whenever I experience anything that flares my symptoms enough to necessitate some bedrest (a virus, heat, stress, etc), my POTS symptoms overall get worse as a result of the rest. But if I do too much activity they worsen as well. I think that I've reached my peak as far as symptom improvement, but my functional ability is still too variable to work even part-time(during the past couple warm months, I pretty much went from chair to bed all day.). My POTS is supposedly post-viral onset, and I've been sick for over 4 years.

I do believe that activity can be a key treatment for many POTS patients, and has been helpful for me but not a cure.

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Six and a half years for me now and have not improved but have deteriorated!! Is there a progressive form of POTs does anyone know?

JanetM x

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I found the Mayo site where it gives the recovery rate of pots. Although it may be debilitating in some cases, POTS often can be managed so the person affected can return to an active lifestyle. For most, POTS is a disorder that will eventually go away. Optimism is appropriate! It's hard to believe that I found three sites all saying this, yet five years later I still have pots even with exercise.

Maggie

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Activity definitely is key, but from what I understand, there are meds that are for some people essential for them to even be active to begin with. I did get more active as I improved in my case. But I was not in a state to be exercising significantly until my ANS regulated. In my case ,I believe an SSRI was key to this.

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My experience is similar to that of Dana and JanetM. Onset for me was at 16, after a virus, and I've been getting progressively worse since then for 15yrs now, to the point where I havent been able to work or drive for 2 yrs. I was just diagnosed this year, but inadvertently had tried some treatments for POTS over the years. Like Dana mentioned, the "POTS" doctors I have now don't seem to have many suggestions other than the typical meds, salt, etc.. and if that doesn't work they have no other ideas. It's even harder to find other "non-pots" doctors to help, as you guys know, and of course they know even less. I've also tried exercise, especially in the past year and a half, was extremely consistent with it, despite feeling worse from it. I used the recumbent bike, also added more strength training with weights, etc... and never got better. Actually I'm probably getting worse. So it's frustrating when I hear teens and post viral POTS people have these amazing recoveries supposedly, cause I haven't found it to be true, and I've tried soooooo much! I wonder why I haven't been so lucky?

I'm facing serious financial issues/ability to continue to support myself, keep insurance etc, and despite desperate pleas to doctors, they have no ideas and aren't helpful. In fact, many say what I have is very hard to treat, and basically say there's not much I can do. I keep seeing dr after dr hoping to stumble on something to help me, but if it was so treatable,and so many people improved, i dont know why so many of us still seem so sick and have so much trouble finding drs to help us. Maybe it's cause of other unknown related conditions.. who knows.. I've read the articles too that say many improve.. and I was so hopeful at first.. but I'm struggling so much and getting nowhere.. so I dont know... ha, maybe that means I'm just in the smaller percentage that doesn't recover? I think I remember reading somewhere 20 or 25% stay disabled??? Maybe the people that recover are those who get diagnosed/treated right away??? Maybe it depends on how their POTS presents? like the specific symptoms they have?? It doesn't say... Anyway, I still have to have hope, but it's hard, I havent found a treatment to work yet, or found that a majority of people get better when talking to my doctors or others online. Hope for someone's sake the articles are true though:-)

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I think I've had POTS 3 years now - I do know I need to increase my activity and am trying to work on that despite setbacks. I've found a medicine plan (as long as Midodrine stays available for now!) that helps me. I am probably 50% better on my medications.

I do hope I have a big recovery in the next year or two. You always hear the 4 or so years. So I'll try to stay hopeful.

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I want to add my two cents to this and I am saying in advance that what I say will be controversial, but it's my own opinion and I want to share it.

I have had symptoms since Dec'06 that were improving until I had my molars extracted under full anesthesia in Dec'09. Since then it's been pretty bad. For a year the official diagnosis was POTS and my TTTs were showing stable BP and about 30-40 bpm increase in HR. This past month on another TTT I blacked out with a BP of 50/25 on the 15th minute and my Dx was changed to "autonomic dysfunction", which to me is a step back, since it's a more generic diagnosis than POTS. For the past months I have been undergoing an array of tests both in Europe and in the US to find out if there is anything underlying my POTS with mitochondrial disease and EDS being the last ones evaluated right now.

Now, on the question on recovery. I do believe that there are not enough studies done to have an accurate number. Additionally, autonomic dysfunction (that includes POTS) is considered a condition, rather than a disease. Asking about statistics on it, to me, is like asking what percentage of leg pain gets better. Leg pain due to what? So, here is my opinion from my research and doctor's visits in itemized form.

1. Yes, most people with autonomic dysfunction get better. It very much depends what is the underlying and/or original cause of the dysfunction.

2. Yes, the people on this site, for the most part, represent the 10% who get worse or don't improve. Why I think so? For two reasons. Because when I feel better, I go living my life, and do dwell in dysautonomia forums. And I think most people do, too. And secondly, because I've noticed most people on the forum that have been here for a long time have either Hashimotos, EDS, or Mitochondrial disease listed in their additional diagnosis. If someone has Mito, POTS is secondary to it, and that someone should not be comparing their prognosis and progression with someone who doesn't have Mito. Yes, discuss how you deal with the autonomic part of it, but for pete's sake, don't go telling people "The doctors are wrong when they tell you you'll get better, because I got worse and I haven't seen people getting better on this site". Because I've seen posts like that.

3. Activity is KEY to improving your autonomic dysfunction, regardless of the underlying cause (even Mito studies have shown to help patients). I have had periods where I couldn't walk around the block. And I have had periods where I climbed a 10,000 mount, in record time, in the middle of a bad spell. So whenever whatever I have sends me into a relapse and I find myself bedridden, I start small - 1-5 minutes on the elliptical as many times as I can, a walk around the block, etc. and over time I build it up to a few hours of cardio a day if I have the time and desire to do it....until the next relapse, but that is the only sure thing that has consistently gotten me out of relapses. And when I have a surgery or procedure where I am instructed to rest (read not able to do my mandatory 30 minutes of cardio per day) I always, ALWAYS relapse.

Thanks for reading my opinion and I apologize if I offended anyone with it, it was not my intention.

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When I spoke with a specialist at Vandy about recovery he didn't give numbers but stated many get to the point that they no longer require medication...while I don't consider that recovery if there are symptoms it's still encouraging.

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