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Has Anyone Gone Into Remission?


DIXZELAND
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I've had my POTS for 18 months now. I may feel better without issues for 3 days at a time but then it all hits me again. Just wonderfin if anyone with POTS truly goes into remission for months or years at a time with no flare ups. I'd like to know the secret if so. I know by now there is no magical pill to take, but somethings gotta give :rolleyes:

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Compared to most of the people here, you could say that I am in remission. I still have symptoms, but they don't interfere greatly with the daily grind of raising two kids and working from home.

I can go shopping and push the grocery cart, I can go out on dates with my husband, I can work (when my kids let me) from home.

I cannot hold an outside full time job, I cannot spend all day in the yard doing yardwork, I cannot be "on the go" all day without symptoms.

I can't do what most women do, all day long, and not suffer for it.

I can't take my kids to Disney World, or Six Flags, or biking or hiking at the park.

I have worked hard to get here: regular, painful exercise...proper meds...adequate fluid intake. It isn't "normal," but it IS getting better...if that helps. ;)

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I guess it depends on what has caused POTS and whether there is any scope for that to go into remission.

I think that finding the right medication and making lifestyle changes can really help and bring about stability in symptoms and severity, but in my case it did not result in remission.

Although I have EDS as the probable cause, my POTS significantly worsened in adolescence. I am hopeful that menopause may bring remission, though I am not sure there is any evidence to support this hope!

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In strictest terms- not me. Remission denotes an absence of the disease state, right?

I am incredibly improved with my med/lifestyle regimen. That being said, I'm still quite limited compared to my healthy peers. I have problems even clothes shopping. Going into one or two stores exhausts me. Too much standing around... I'm much with better grocery shopping. I can push my cart & race around the store as I pretty much know where the items I'm purchasing are kept. Moving helps. No matter what I've done (or not done) on any given day, I'm still completely exhausted by mid afternoon- going out at night is VERY hard.

My illness is managed and controlled- not cured. I'm very grateful for the health I have re-gained :)

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That is very true what lina said. I was in remission for a year. I was able to walk around the mall, travel, and even go tanning. I always had to have my afternoon nap, but my life was pretty great compared to what it was before. Unfortunately the pregnancy sent me in a full blown realapse. Hopefully I will get back to where I was.

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I was diagnosed with dysautonomia and various other illnesses that are usually associated with POTS (chronic fatigue, small fiber neuropathy - diagnosed just last winter - vulvodynia, etc). I also have heart issues, so I may not be your average POTS bear. I have kept up on exercise as much as possible, but nowhere near where I was before I became ill, and try to eat right. I nap in the afternoon, and am asleep by 7-8 pm at night. Then it's up at 4:30-5:30 am and the cycle starts all over again.

There have been times when I feel not as sick, but I've never felt like I've been in remission. I've had POTS for four years now, and am just turning 49 in two days. As someone else wrote, perhaps menopause will help....Sure hope so. I know that others have had periods of remission, though, so don't give up. I also know people who have had the illness for 20 or more years. It's just different for everyone, so don't give up hope!

Here's wishing you strength and peace,

Cheers,

Jana

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Hi

I was dx in Sept. 2006. Took me 2 years to slowly come back. Eventually I was off all my meds. (mestinon, midodrine, venlafexine) and doing okay. It was not that I had no symptoms, but with continued loads of water, salt and exercise I was doing alright. I was able to keep up with my kids,walk, ride my bike, cross-country ski... and finally return to work (part-time by choice). Felt great,really great... so I guess it could be called a remission. I thanked God... everyday.

Now after almost 2 1/2 years of "remission" all symptoms have come roaring back for an unknown reason. I'm back on meds. and trying to start my way back AGAIN. I hope I can. It's scary. I feel that I did it once before. Why not again? (This is what I tell myself to keep fighting!)

Like lina said, I do believe that there are people in remission who we don't see on the forum because they are back to living their lives!!! I haven't been on the forum until now... until my return to the world of POTS. Now I ask God for help... everyday.

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Is this just for POTS? or is ME/CFS with POTS included. I just wonder if you have EDS OR CFS if it works the same way.

I have read somewhere that with ME/CFS and POTS that exercise can actually make it worse in some people. I would LOVE to do this and i generally keep up as much as i can, but i dont want to go back into another huge relapse. I seemed to encounter one when i pushed myself too hard.

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I just finished watching this video and didn't hear her say what tests she had other than the one standing test that her cardiologist said indicated that she had POTS ...

So many of us have other autoimmune problems and she didn't mention any of these .. No low bloood glucose, allergies, nothing ...

I was thinking that she had POTS but ... she also said that she was vomitting when she first came down with POTS but never said why that stopped either ... That could've been an indication that she had a stomach virus or parasite and needed to work her way through it. Or maybe she changed her diet which stopped her vomitting and she didn't realize it impacted her POTS.

For some people their illnesses are short term but they are confused with those who have chronic problems ... Big difference ... think "flu" versus POTS ... ;)

For instance ... I had a freind who got a virus that causes a heart problem for him but as soon as his heart was surgically repaired, he went back to being completely normal ... He never had a chronic heart problem ..

FWIW ... I just went through an intensive exercise program from Oct 2010 till Feb 2011 and while I gained muscle strength, it didn't help my OI or CFS. In fact, I felt as if I had chronic post exertional malaise all the time.

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I have not found anything really as far as lifestyle thus far that's helped my OI or dysautonomia issues. That being said I am not really very compliant with what's been told me to do.... Drinking a ton of water is absolutely NOT my forte' and I suffer from that probably. I hate anything 'on' me so the hose and binders --- aren't on. My meds require very frequent adjustments - and it's crazy making where the vitals go from one extreme one week to another extreme the very next week. With a high baseline b/p - the normal drugs are not given me ... but other one's are. The tiredness and fatigue mid-day are unrelenting - but for me are relieved by laying down flat for a half hour or so...the old lay down or fall down routine. So I pretty much 'pretend' I don't have EDS, dysautonomia or anything at all. I take pain meds and push through a day as best I can. For me it's a mental battle overall - my worst fear is slipping into a clinical depression or some such thing... So I keep trying part time jobs .. finding them too much, quitting, and beginning again...until maybe one day I'll either die or perhaps find something suitable. For me sitting at home would make me insaner than I already am - and I get more and more deconditioned as pain is a reasonable reason for me to not exercise - at all. It hurts not while I do it - only after - and I have no guage as to when I'm hurting myself...unless I near faint. BUT ... if I force myself to work in a job - then I am made to think of someone other than myself and ignore my pain and issues & I have a minimal amount of activity this way. I don't recommend this 'way' though - 'don't try this at home' kind of thing lol... I'm just enough Irish to have it work against me.... I wish I could take some kind of Zen pill - something to have me not freak out about all of this - but anxiety is part of the whole ball of wax as well...

So I keep trying...good days, harder days, trying to find my nitch in the world...and as we all know it could be worse! So I guess I 'pretend' a remission - but thus far it ain't happening - but then again in the 5th decade of life - with sweats, flushing, neuropathy - dunno how much better it ever will get... I get more and more like Gumby in my hypermobility - counter to those that print - we stiffen as we age... not I - so the degeneration is in overdrive it seems......

My fix? Chocolate. Laying down. A rare glass of wine. Laughing. Baking cookies for others even if I have to take a break 6 times. Pacing housework. Petting my cat. Yes it certainly could be worse!

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Guest tearose

Remission to me is not being "all better" but being at a better place with daily function. It means that I can leave my seat cane in the car,or not carry a change of clothes, or eat solid food more, or not wear a heating vest or need a cooling garment...

I have had long periods of managing better but I must always "sense" my environment and adjust.

Over the years I have noticed that when my relapses happen, they are longer and usually environmental or immuno-triggered. Like a cold, virus, mold, fatigue...

I am good at living like I am all better and this does help!! It makes me push my personal envelope and also listen to my inner wisdom when I am to pull back.

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I have - twice. The first time I got "hit", I was doing foreign study in London, and had just flown back to the US. I was 19, and I went down hard. It took me about 2 years to recover. Back then, (I am 36 now), they did not have such a thing as POTS, so I went undiagnosed. I made it through most of my twenties just fine, until 28. Then I went completely down again. It took me another two years to climb out, but this time I got diagnosed at Mayo Rochester, and I only came back about 80% of the way.

I think the key the second time around was knowing what "it" was. I also have really worked hard to find out what works for me, and what doesn't. I work a full time job, I have to travel for work, so I fly a lot. But I have learned little tricks to keep me going. Funny - I used to ask people on this forum how I would be able to fly, and now it's a big part of what I do for a living, so I have come a long way.

Will it hit me a third time? I don't know. I pray not, but in the meantime - I'll keep going.

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  • 2 weeks later...

I have never spoken to or been in contact with anyone with POTS that has experienced a complete remission of POTS.

That being said most people do improve over time, but many relapse and tend to wax and wane. My doctor said that in his experience generally patients wax and wane. He also said that spontaneous remission is possible.

I fluctuate between being quite ill with POTS to being nearly completely well where POTS is only a minor inconvenience for me - I can run 5kms quite easily, work full time (is more challenging due to its sedentory nature), etc.

So to answer your question I have had POTS sine 2003 and Id say that 75% of that time Ive been able to function ok in life - cant deal with stress as well as I used to, tend to be tired a lot in the mornings and stuff, but I go to concerts, drink with friends, go fishing, shopping (although too long and I start getting dizzy) and I used to play sports.

Things that I have done that MAY have helped are exercise intensely - put myself through a bit of payback and pushed through a lot. try to eat healthily and that seems to help, and I tend to take valarian now when i get stressed as my stress responses with POTS are over the top even when im relatively well. Medications have never been overly helpful for me thus far other than betas.

I also have ankylosing spondylitis and in the last two years while POTS has improved, this has pretty much gone into arrest for me and Ive been in chronic pain pretty much daily to varying extents. That being said Id take arthritis over POTS any day of the week.

Relapse triggers for me are certain foods but only sometimes, stress, airtravel and sometimes more often just randomly.

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Id agree with the above in that with my relapses Ive tended to notice that the third one i never recovered as well from as the others. But its hard to say for me because I developed AS at the same time as I lucked out with POTS out of the blue.

Have you tried eliminating glutten, dairy and sugar? I've done some research on autoimmune illness and these are the first things suggested for autoimmune issues. Also, using beta glucans and colostrum. I have low IGG levels and have been attempting the elimination of these things from my diet and can tell that they have been having an impact on my health. I didn't realize how much until I went off of them and occasionally mess up. Whoa! how they affect you then.

Issie

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Sorry for not replying sooner BellaJulz - been traveling for work :)

I find that with POTS, you really need to take control of your treatment plan yourself, and find what works for you individually. POTS hits each of us differently, so it makes sense that treatment will vary between all of us. But I am more than willing to share what I do if it can help anybody else. Here are the main categories:

1) Research - read, read, and read some more. I read about the following:

1. POTS, Dysautonomia, Autonomic Nervous System, Renin-Angiotension-Aldosterone cycle, citric acid (Kreb's) cycle, metabolic disorders, Nicotine receptors, baroreceptors, and the list goes on...When I found articles that resonated with me, and I had questions, I took them to my doctors and asked them to explain it to me. Any doctor that could not satisfactorily explain it to me, or who didn't understand the articles (and I hate to say it - but there were many who had no clue), or did not offer to find out and get back to me, were instantly fired by me. Sorry - but I need docs who are going to bring their A-game, those that can't, get canned.

2) Dealing with Doctors - Build your own care team!

I found I had to look nationwide for good ones. And I screen them like I was interviewing a job candidate, because my health IS their job. I have found 4 very spectacular physicians, and I hang onto them dearly. I also have a very good primary care physician, that is aware that my "case" is above his level of expertise, but he was willing to learn, and has since exchanged correspondence with my team of specialists. The 5 work in tandem with each other, and it works quite nicely.

3) Family and Friend Support - Build your own team!

This part is really crucial. I explained to my family and friends what I learned about my condition. I have also shared with them what my limitations are, and that those can change on me any time. Not all were able to deal with it, and that is okay. But likewise, my energy is limited, and very important to me. I spend my time and energy on the relationships that are positive, and I let the others go. I don't mean this to be flippant, that is just the way things are for me, and I am okay with that.

4) Meds - I take 5 mg of Lexapro every day. I take .5mg Klonopin before I fly. That's it. Beta Blockers did not work for me, they dropped my blood pressure even lower, and my heart actually sped up to counteract it. Really freaked the Mayo people out, not to mention I almost passed out/vomited. But hey - you don't learn what works if you don't try. :lol: Which brings me to 5. Whenever I have to take OTC meds - I always try it in Childrens dosages first, and SLOWLY work my way up. Vitamins: I do take Super B-Complex, C, and E. It works for me, don't know why, but it does.

5) Try stuff out! I know it can be scary, but how can you know if you don't? Consult your "team", have them with you when you try, and give it a whirl. COLD AIR/COLD WATER/COLD ANYTHING - my body likes, but would have not known about it if I hadn't tried it.

6) Give yourself some breathing room (no pun intended). I avoid emotional stressors, as for me, they activate my central nervous system, and then there goes the autonomic system, and I'm agitated - and whoops - there goes the heart rate, and I fall down the hill. I practice Yoga, Meditate, and am a huge John Kabat-Zinn follower on practicing mindfulness. It is true to some extent - what your mind thinks and feels, the body will follow. The reverse is also true. I try to find balance somewhere in between, It takes a lot of practice, but I am pretty good at this now.

For me, my symptoms usually require a "trigger". The problem is, that even when I calm down mentally and emotionally, my nervous system has already decided to snowball itself - all the way down the hill! That is when I have to resort to Klonopin, because my system will not calm down without medical intervention once it has gone beyond a "breaking" point. It took me a few years to know when that point was, but I did finally find it.

7) Routine, routine, routine. My body does NOT appreciate surprises! :P I get up at the same time every day, I exercise at the same time every day, I eat at the same time every day, etc. After a few months, my body got used to running this way. I can now throw it a few curve balls, and it will be okay, but I can't stray from my routine for too long. It makes sense for me - if I change my sleep patterns daily - my ANS gets upset. If I change my eating patterns everyday, my ANS gets upsets, and picks a fight with my GI system, and things turn ugly :lol: . I try not to "poke" my ANS too much, it is sensitive enough already, so I try to do it some favors by creating as much of a "static" system for it as I can.

8) Diet/Exercise - like most here, I do my best to eat healthy. I tend to avoid sugar, my system doesn't tolerate it well. I do exercise every day - but I am no mountain climber. I cannot do anything that involves stairs, they activate me somehow. I can climb normal flights of them, but avoid them. I speed walk, and do light hiking. My husband calls it running without my feet leaving the ground, because I can walk at an amazing clip. I keep my calf muscles VERY toned - helps the blood/pump system. I do not do large hills though. They activate me like stairs. Besides, we get enough of an uphill battle with POTS right? :P

9) Hot weather - I do NOT tolerate heat well at all. If I plan to go outside, I go outside in the morning, or evening. I try to avoid the hot part of the day. If I am going to be outside in hot weather all day, I wear a cooling vest, drink LOTS of water and eat a lot of salty things BEFORE I drink my water. Gatorade is godsend. If it's just too darn hot - I alternate air conditioning for 30 mins - outside for 30 mins. Bar hopping was fun this way, but I don't drink alcohol in hot weather - I learned the hard way.

10) Alcohol - for the longest time I couldn't drink it. Then, as long as it was extremely cold, I could tolerate it. I can now drink it without incident, but I don't go overboard. Dehydrated = problems.

MOST IMPORTANT - HAVE FUN EVERYWHERE AND WHEN YOU POSSIBLY CAN. DO NOT EVER, EVER, GIVE UP.

Sorry this is so long, but due to my travels, I don't get out here often. Good luck to you, and keep going, no matter what. It may seem sometimes like you are alone, but then just look at all of us out here - you are not alone.

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The past few years have been a roller coaster for me. I've gone from being mildly affected, to being severely affected (to the point I was afraid of losing my job) to being almost completely well again.

Last summer I was at my worst. I was dizzy nearly every day for several months, my HR and BP were all over the place, and I was taking 15 pills a day just to manage to haul myself into work for a few hours every day.

Somehow, over the winter it got better.

Now, I am to the point where I don't take my midodrine or florinef at all, and I am going to the gym almost every day and participating in sports like I used to. I transitioned to a standing desk at work (!!!) and almost never have to think about my heart or bp.

I don't know that I would say I'm in remission, but I'm as close as I can imagine to being there. I do realize that tomorrow could change everything, so I definitely appreciate this point while I can.

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