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IceSkate

Does Adult Pots Go Away Permanently Or Will It Come Back?

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Does adults POTS tend to go away permanently?

I am wondering because I got sick around a year ago. It got worse last summer to the point it was difficult to do anything. From September through October I could not taste ANY food and I had a slight numbness throughout my body. In early November my taste came back, the numbness went away, and I no longer felt ill when standing. All my POTS symptoms are gone.

Do you think my POTS could be gone for good? I am concerned that it will come back. Has anyone read any studies or had any experiences relating to it going away completely or coming back?

In October, I made an appointment to see a neurologist for the numbness and inability to taste. The appointment is for January, but since I can taste completely and have no numbness, I am thinking about not going.

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Some doctors say it does in most cases, others say it does only for high flow autoimmune patients, others say that it waxs and wanes, others say that it tends to stay. It definately seems to vary with each patient. My POTs doc said that he has seen spontaneous remissions in rare cases. Literature by Stewart and Medows suggests that one type is self-limiting and resolves within 1 to 2 years.

Ive had POTs ten years - waxes and wanes with three major episodes and feeling fairly well the majority of the time.

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It's been 24 years for me, with two remissions lasting about 6 months each. For me it's been a slow and steady increase with each year worse than the last.

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I agree that views are mixed but with my experience it seems to wax and wane. My current symptoms are not nearly as bebilitating from summer yet the VS jump up and down and I have the exhaustion/shortness of breath with trying to do certain things when initially I felt I might be able to attempt a task. I thought that I'd remebered reading research that mentioned POTS could be as debilitating as CHF. The younger you are when developing (perhaps like childhood asthma), the better your chances for improvement, but the older you get, the more likelihood of 'chronic' with incidents that can be very debilitating. Mine has been a gradual (? 3 year) progression (although I had a few minor symptoms as a child that I never realized stemmed from this). Now I have Orthostatic Hypotension and was told my autonomic nervous system was failing. I retain fluid (although the kidney function is normal and I am sodium restricted), so have added Bumex for that. I was told I would have fewer warnings of faints and that I could anticipate a pacer down the road. With autonomic nervous system failing, I suppose that is a way to say things are chronic, and if chronic, not likely to dissipate. It is cold here now and I haven't had near the experiences that put me in the place of triggers. But my legs hurt so bad when standing or getting out of bed in the morning, and I am on Rx. But I know since I've always run low BP, this is here to stay unless the Rx's can help reduce symptoms/episodes. (I'm in 5th decade of life). This being the case, I still take precautions as best I can.

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I'm scared of it coming back. I know most people on this forum are those that have very hard cases of POTS. I'm hoping mine was not too bad. I think my biggest worry isn't only the illness itself coming back, but that I don't have any doctors on my side. And now that I feel completely better, I really wouldn't have any doctors on my side. Even though my tilt table test revealed an increase in bpm of 60, they said I didn't have POTS, but they wouldn't say why they thought that. They just told me I had anxiety.

I admit I am scared of the summer because of the heat. It is cold here now. I really, really was hoping that I would be OK. I'm only 28.

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What I'm most scared of is that I can't find a doctor who will even believe I have POTS. I saw an endrocrinologist (because last spring I was diagnosed with hypothyroidism - but it's OK), and he brought up POTS because he remembered hearing about it maybe 15 years ago, but he said he didn't understand it and couldn't diagnose it. He wanted me to see an internist. The internist allowed me to see a cardiologist for a tilt table test, which came back as my heart rate increasing 60 beats over the 40 minute period, and dropping back to where it was (around 60-70) when I was horizontal. The cardiologist noted this in the test results, and then said he didn't think I had POTS. The internist agreed with him, but neither would talk any further about it. They just thought I had an anxiety disorder.

It just makes me feel crazy. But my biggest fear is that I have no doctor to back me up... I would feel 1,000x better if I did.

I live near La Crosse, Wisconsin right now. Anyone know of anyone here who at least is willing to learn about POTS? I applied for an appointment at Mayo, but it will take forever and since I'm feeling 100% better now I doubt I would go.

I am worried about summer, though... summer of 2010 I started getting horrible stomach aches 20 minutes after eating/drinking anyything (even a sip of water), and my eyes dried out to the point I had to be constantly putting drops in them.... then in fall the eye pain went away.

In summer of 2011, I would walk the laundry up the stairs and be so winded I couldn't do anything for hours. It was like I had run a marathon... I felt such fatigue... and it went away went the weather got cold.

I really wish a doctor would help me. I might be started a new job soon and I'm worried it will come back. I hope it doesn't.

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My cardiac specialist who I saw in October that this has been the worst summer for his patients because of all the days of temps above 90 and high humidity. But I would hate to think about never having another summer. I have learned not to bend at waist to pull weeds from flower bed or to take walks when it's hot/humid outside. I carry my laundry in my arms rather than added weight of basket but DH does have to retrieve things from the bottom of the hamper or the back of the washer sometimes. Some of the faints were due to things that I had done (yet didn't no were 'no nos' yet. And I'm stubbornly independent--so after the spells, I get the lectures from DH and DS. I try not to dwell on what may be as much as try to live today. The future is scarey but tomorrow is promised to no one. I read a post that said something like 'yesterday' is the past. 'Tomorrow' is the future. 'Today' is a gift and is why it is the present.

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See thats an interesting comment. Because Im worse in the cold and feel better on hot days. My doctor looks at me incredulously when I say that because the prevailing wisdom is heat equals vasodilation equals worse POTS.

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See thats an interesting comment. Because Im worse in the cold and feel better on hot days. My doctor looks at me incredulously when I say that because the prevailing wisdom is heat equals vasodilation equals worse POTS.

Me too. Neuro doc looked at me like I was crazy when I told him I was worse in Oct than I was when I saw him in July. He said "that's odd because ALL of my other patients are better now that it's cooler." Glad to know I'm not alone.

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See thats an interesting comment. Because Im worse in the cold and feel better on hot days. My doctor looks at me incredulously when I say that because the prevailing wisdom is heat equals vasodilation equals worse POTS.

Me too... I feel terrible in the winter..I am in a huge flair right now just as temps in AZ went cold. I wont feel better until March when it warms up. I have no clue why this happens, but my dizziness, fatigue, and brain fog are terrible right now.

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I think I'll keep my neuro appointment for now. My fear really is just having the neurologist look at me like my internist, cardiologist, and endrocinologist did... like I was crazy and my symptoms were in my head. It's a terrible feeling.

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I think that this is such a complicated condition that docs really don't know anything much. My experience is that the symptoms come and go. Especially if you don't know what your triggers are. For me, I am in agreement with the others who said that cold is worse. In the summer I have low energy and if I don't sit down I have trouble breathing but in the winter I CAN NOT get warm, the brain fog is worse and I have episodes of severe pain.

The best thing to do is to keep the appointment at Mayo and with anybody else who will seriously listen to you no matter how you are feeling. You need to learn as much about YOUR POTS as you can. Knowledge is the key to understanding how to function properly. I am just learning to build my life around what I have to do and not what I want to do. But I sincerely believe that this can be managed so that we can live a fulfilling life. . . .It may just be a different kind of life than I am use to.

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See thats an interesting comment. Because Im worse in the cold and feel better on hot days. My doctor looks at me incredulously when I say that because the prevailing wisdom is heat equals vasodilation equals worse POTS.

i'm the same way - i've been keeping the house super warm because my Raynauds acts up and my feet and face go nuts in the cold. i think i have hyperpots, so this would make sense.

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I think I'll keep my neuro appointment for now. My fear really is just having the neurologist look at me like my internist, cardiologist, and endrocinologist did... like I was crazy and my symptoms were in my head. It's a terrible feeling.

I think you should print out a bunch of journal articles - not stuff off wikipedia or google (there are links found on dinet for research papers) and bring them to all your docs. That's what I did almost 10 years ago, and especially in 2006 when I had a major flare. I also printed all the symptoms of POTS, showed them to my doc. and he said, "yup! looks like you have POTS" :)

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I think you should print out a bunch of journal articles - not stuff off wikipedia or google (there are links found on dinet for research papers) and bring them to all your docs. That's what I did almost 10 years ago, and especially in 2006 when I had a major flare. I also printed all the symptoms of POTS, showed them to my doc. and he said, "yup! looks like you have POTS" :)

Thanks for the tip. However, this didn't work out with my internist (I won't be seeing her again, though) and my cardiologist. I brought her an article from pubmed published by Vanderbilt University and sponsored by the national institute for health. She didn't even look at it. She just said, "We have licensed cardiologists here who say you do not have POTS, and you have some article from who knows where"... even though I told her exactly where it was from, who wrote it, and who supported it...

Kind of traumatizing... I just feel like I've been branded crazy by these doctors and if any unexplained symptom comes up they won't believe me.

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Thanks for the tip. However, this didn't work out with my internist (I won't be seeing her again, though) and my cardiologist. I brought her an article from pubmed published by Vanderbilt University and sponsored by the national institute for health. She didn't even look at it. She just said, "We have licensed cardiologists here who say you do not have POTS, and you have some article from who knows where"... even though I told her exactly where it was from, who wrote it, and who supported it...

Kind of traumatizing... I just feel like I've been branded crazy by these doctors and if any unexplained symptom comes up they won't believe me.

Wow, such a smart Dr who knows it all and doesn't need to respect the most respected Drs!

Being in LaCrosse my opinion is that you should make the Mayo appt. At this point an appt. that takes forever is a good thing since you have no symptoms right now. When the appt comes around if you still have now symptoms, reschedule it and then after that perhaps you may want to cancel it if you still have no symptoms. Keep it like an insurance policy since these appts. do take so long to get. I would also do the same with your January appt. Keep it untill much closer to the appt time and then weigh whether you want to see them at that time.

I think there are many, many people who have shorter episodes of pots and then recover. As some here have said, they aren't here, they are off getting on with their lives. Praying you are one of them :)

I love this quote - 'yesterday' is the past. 'Tomorrow' is the future. 'Today' is a gift and is why it is the present

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Thanks for your advice kcmom.

I did make an appointment with Mayo, knowing it would take a long time, so I think I'll keep that and see. I know I just have to live like the POTS is gone completely and not worry about it coming back.

Thank you!

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Ice Skate,

I am happy to hear that your symptoms are better and you feel like your P.O.T.S is gone. I am sure that you live your life with a completely different perspective, now. How we take our health for granted until we don't have it. At least I did.

I also live in La Crosse, WI and I am glad you were able to get into Mayo. My insurance denied my referral for me to go Mayo so I have to go to UW-Madison instead. Actually have my appt. tomorrow morning so we will see how that goes. I was, however, diagnosed with P.O.T.S. in La Crosse. Not sure where you receive your care, but I go to Gundersen Lutheran. They do not a lot of doctors who specialists or know a lot about P.O.T.S but the doctors have heard of it and eventually I did get my diagnosis. I had to see my GP, then a cardiologist, endocrinologist, neurologist, another cardio (electrophysiologist- who is fantastic by the way and now is the only cardio I see there) and an hemotologist. I am sure there were more, not to mention multiple CTs, MRIs, stress test, tilt table, labs,labs, and more labs, thyroid tests and scans, every heart test you can think of and so many more tests that I can't even mention them. I also wore a Holter Monitor for a month which diagnosed my tachycardia. I have a real problem with very low blood pressure and tachy which causes lots of syncope (which has led to multiple head injuries and concussions) and when I am upright on a normal day will have at 15 or episodes of syncope with no warning so there is kind of a safety issue with me because I don't seem to just "crumble" down like some people who faint but I will fall straight back onto anything which is why I have hit my head and cracked it open so many times.

I really hope you stay well but I would keep your Mayo appt. just in case. If you have any specific questions about care I have seen in La Crosse you can send me a private message and I can give you more details. I can tell you it took about 4 months to get the P.O.T.S diagnosis which isn't too long compared to a lot of others that I have heard about. Prayers that you stay healthy and symptom free!!!!

Jen

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if its any help i tend to find that my POTS goes away for such a long time that I tend to forget what its like and then it comes back LOL. So perhaps by worrying about it coming back you may not do what ever it is I do that tends to bring it back LOL

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I have had episodes over the past 20 years where my POTS went away for long periods and I convinced myself it was gone. But it always came back, and lately worse than ever. I have heard that some people do completely recover, however, depending on the cause of the POTS.

Re: temperatures - - I can't handle too hot OR too cold (my husband says I have a 5 degree comfort zone), although lately cold is more of an issue as my hands/feet/face go ice cold (but I'm hyperPOTS and someone here mentioned that could be a factor?).

Carol

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After seeing all the posts about remissions, it makes me more hopeful! :). I started having acute symptoms about 3.5 years ago (I now know it had been happening for a long time before that, but chalked it up to CFS), and I have had no reduction of symptoms save for one blessed day two years ago! Hopefully this means my time for remission is coming soon! :)

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Whether or not you have remission, or permanently get better completely depends on *WHY* your body is malfunctioning in the first place. For folks like me, with a genetic cause, remission is unlikely. People who have major nerve damage or major damage to the systems that produce the hormones and other chemical systems that regulate bp, heart rate, digestion, etc. also may not experience remission. It's been reported in the literature that people who have a sudden onset following a major viral infection are the most likely to someday get better--that being said, sudden post viral onset is not a guarantee of recovery or remission.

Years of experience here and on other forums make it easy for me to say with assurance that *most* patients experience a waxing and waning of symptoms--relative periods of "betterness" (not usually *all* better to pre illness levels, but better than the bad times) and relative periods of "worseness."

Nina

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