Does A Teenager Really Outgrow Pots?

[looneymom]

I have read articles that state this is possible. My son really gets discouraged and wants POTS to go away. As his mom, I keep encouraging him and remind him that he is doing so much better than a year ago. If someone has a son or daughter that has outgrown POTS, my son and I would love to hear your story of encouragement.

[imapumpkin]

I was told by my neurologist that it is possible to get better from POTS and only have occasional minor flare ups. She is a specialist in dysautonomia so she knows her stuff. I can't give you any personal examples but if the DR says its possible that is a good sign. I hope your son feels better soon. We all get discouraged and from what I understand, teenage onset POTS is much more likely to go away within a few years than later onset. Hope this helps!

[SeattleRain]

Read a lot about that - as well as those who develop pots after a viral infection seem to be great candidates for the best prognosis:

Prognosis

Many POTS patients will see symptom improvement over the course of several years. Those who develop POTS in their early to mid teens during a period of rapid growth will most likely see complete symptom resolution by their mid twenties^{[citation needed]}. Patients with post-viral POTS will sometimes improve greatly or even see a full symptom resolution. 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]}. Rarely, a teenager who develops POTS will gradually worsen over time and have lifelong symptoms. Patients with secondary POTS as a consequence of Ehlers-Danlos Syndrome will also usually struggle with symptoms for life. In some patients the only cure for POTS is time.^[30]

Many adult patients report a relapsing/remitting course characterised by periods of partial remission and occasional 'flare-ups' or exacerbations.

Recovered individuals do complain of occasional, non-debilitating recurrence of symptoms associated with autonomic dysfunction including dizzy spells, lightheadedness, flushing, and transient syncope, as well as symptoms of irritable bowel syndrome^{[citation needed]}. These symptoms are consistent with B12 deficiency in absence of anemia, which should always be ruled out directly by checking B12, homocysteine and methylmalonic acid.^[31]

Source: http://en.wikipedia....drome#Prognosis (It's Wikipedia, so you know it's legit )

I just wish it went away as fast as it comes on.

[puppylove]

I'm 16 and every cardiologist I have been to says that they are confident I will grow out of it by the time I'm in my 20s because that's what happens with most teens who get POTS. I really hope I will and that you're son will too.

[Christy_D]

I wonder what the prognosis is when you throw MCAS in with the POTS. My son only continues to get worse year after year, now 17. We were hopeful he would outgrow the POTS, but now that we have added MCAS in I'm not sure this is going to just go away. His POTS was not post viral, it was just a slow progression of symptoms and severity.

[looneymom]

Christy, could you explain to me what MCAS is. I have seen this term mentioned on this site before and have wondered what this condition is.

[Christy_D]

MCAS is mast cell activation syndrome. The mast cells are 'behaving badly'. My son's heparin and PGD2 levels are too high and his histamine is on the high end of normal(which would probably have shone to be higher if not on doxepin). The mast cell can dump or degranulate too quickly. Dr Afrin, a mast cell specialist, told me POTS is a symptoms of MCAS.

The symptom that led me to look into MCAS was itching. My son would get itchy when he was too hot or warm. When I would scratch his back, it left red welts. Many of they symptoms from MCAS and POTS overlap. I am horrible at explaining this, maybe Issie can chime in. We spent 3 years trying to treat POTS before we got the MCAS diagnosis. It could take awhile to find the right medication or mix of medications to help, the list is very lengthy.

This is not the best article, but it does list the symptoms:

http://www.ehow.com/...n-syndrome.html

[jangle]

This is an interesting discussion to have. I think in the preliminary years of POTS research there was this huge rush towards optimism. I recall reading in several reviews that 90% of POTS patients respond to therapy. Now the articles coming out are starting to ask questions as to why we're not getting better, why we're difficult to treat etc. etc.

It was the same thing with beta blockers, some early studies were boasting near 100% treatment response, and now other studies are saying actually few POTS patients tolerate beta blockers in appreciable dosages.

There has been a long term follow up study which I posted (somewhere?) that showed that about 33% of POTS patients after 6 years considered themselves remitted, and something like 60% (including the remitters) considered themselves improved.

The old study on soldier's heart (probably POTS) patients showed that about 20% improved over the years with the remaining 80% being symptomatic.

So yes it does seem possible to "outgrow" or I guess have a remission from POTS, and you'll find stories of that here. However, I don't know how accurate it is to think that everyone will outgrow POTS.

I developed POTS when I was 17, I'm now 24 and still symptomatic. What has changed since then? Well admittedly my gastrointestional symptoms such as early morning vomiting and vomiting in general has relented. My adrenal surges have calmed and my presyncope is not as intense as it used to be. So I would rate myself as improved.

I suspect an average exists, some people will have better results than me, some worse.

The research however is starting to suggest that POTS is immune mediated which has circumstantial as well as biomarker evidence for it. Autoimmune disorders are difficult to predict, some are chronic, a lot are relapse/remitting, and still others can disappear after time.

The prognosis depends heavily on the underlying cause of the POTS and probably is the best deterministic variable as to whether one will improve or not by itself.

[looneymom]

Thanks for your response Jangle. It has almost been a year since my son's diagnosis and he is improving. But it's just not fast enough for him. As parent, it seems to me that POTS is robbing him of his childhood. Its too bad, doctors can't find a quicker or instant cure. I know alot more people on this site would be jumping up and down for joy.

[kayjay]

The only teenager I know who was diagnosed with POTS as a teen IS better. She is now a doctor herself and is doing great! Be hopeful! She managed quite well to finish her schooling, get married, and work crazy hospital hours.

[Lenna]

I don't know if my son will ever completely be rid of all his POTS symptoms, but he is much better. He developed POTS when he was 15 and he was too sick to attend high school except for an occasional class. It was a nightmare. Eventually he got his GED. I don't have to explain how heartbreaking this was. Well, at the age of 20, he is now at a prestigious university, living in a dorm and doing great. He still has fatigue and other POTS related symptoms but they're now manageable. I don't know if he's actually outgrowing POTS or if we just finally have him on a medication regimen that's working for him, but in either case, there is hope for the future and I wanted to share that with you.

[looneymom]

Thank you so much for sharing this Lenna. POTS is a nightmare. I am glad your son is doing much better and has been able to get back to a much more functional life style. You have given me hope for the future. Thank you

[kclynn]

My son had symptoms starting before age 14, diagnosed at 15 when he became home bound for a year, the next year he attended school part-time, this year at 17 he is full time school, also has a job (4 hours a week) and also some activities such as trap shooting and bowling. He got his Drivers license last spring which I think had a huge influence on him, letting him know that not all his dreams were smashed. Turns out he also has Tourettes which gets worse when he has pots symptoms or if he has Tourettes tics the pots symptoms get worse - very hard to tell what makes what worse. The Tourettes came on exactly when he got so bad he became home bound at 15 and I remain convinced there is a strong connection since there is no genetics we can determine in the family. Anyway, my son became severely depressed during that home bound year. We were happy to have a diagnosis that he would eventually recover, he only heard life as he had planned was not going to happen, no carefree teen years for him. That was the most horrible, terrible year. Sometime during the following year he found himself, he now has a positive outlook on his future and is beginning to think about college. POTS doesn't travel a straight road and we realize there can be relapses, but he has found a balance. He can not over do it, or he has a rough few days. Evenings can be tough, he did his math laying on the floor tonight because he was dizzy and couldn't get up. He does get down of course, but there is hope. He recently told me he is willing to reach out to other kids, so if your boy would like that, message me. Hope this helps, I know as a mom how heart breaking it is to watch our kids struggle and hurt so much.

[corina]

This is why I love this forum so much: reaching out to help others. Thanks SO much everyone!!!!

[Guest Alex]

bump

[imre]

Every story of recovery or improvement I've heard has included symptom improvement over time, finding a proper regimen of exercise and medicine and basically fighting hard against pots everyday.

[Lethargic Smiles]

My older sister developed POTS as a teenager and outgrew it in her early twenties. At that time they did not know what we know now about POTS, so she was told she had severe depression and a major anxiety disorder. When she was diagnosed with POTS (late 90s) they said it wasn't a big deal and just to eat extra salt. Looking back it is pretty clear she had a bad case of POTS. She couldn't stand to quickly or she would faint, she hardly got out of bed... She was only treating what she thought was depression/anxiety, not POTS, and still got better. So her improvement story did not include exercise, beta blockers, blood pressure medication, or any of that... Just a young woman trying to overcome what she believed to be anxiety. She now works 1.5 jobs, both on her feet without a problem.