Do You Have Remissions Or Long Periods Where Symptoms Are Better?

[lynnie22]

I have had a constant and worsening state of my symptoms for about three years. My doc thinks I must have had this for years before, as I'm simple too old (64) to get it, he says. If I have, I never knew I had some of the symptoms, although I had two periods in my life of extreme fatigue, breathlessness and other symptoms.

For these three years, however, the symptoms have been unremitting. Do others have any periods of getting better/symptoms improving?

[Angela]

i have a day or two now that symptoms go and I feel almost normal, times where I don't notice the effects so much but still am not my prior self, and then really bad flares that get longer each time.

[AussieOI]

Hi Lynnie - I have only had this condition for about 2 years. My symptoms do seem to come and go. A couple of years ago I was ill for 6 weeks with POTS like symptoms. I assume it was the onset of POTS but I really have no idea. Was OK for a year, got sick last year due to an unrelated condition, POTS came on for 4 months, disappeared for 3 and has now been back for 1 month.

There seems to be no rhyme or reason to the whole thing. A few times in my life I have felt faint when I was in extreme heat so maybe I has some suspectability to it however I would definitely say I did not have POTS until say 2 years ago.

[Akgirl]

When your pots goes away for periods of time, do you continue your medication?

[AussieOI]

I had never taken any meds till I got POTS badly last year for 4 months. So the first time it went for nearly a year I was never on any meds. Last year was on Florined for a month and that have me a headache so I wnt off it. Then neurologist said that POTS is something you just have to put up with so I accepted it.

Then it again just seemed to go away. Then I had a period abt 5 weeks ago (I put my periods off) and it has come on again and in the last 5 weeks I thought I better try and investigate this issue further becuase it has now come back a third time. Now I am midodrine which I think might be good but not sure yet as have only been trialling it for a week.

[Angela]

my aunt said, and she is a doctor, but gut flora should go thru the vagina canal. I don't think drugs that stop your period are good for you, i mean, we were designed to be the way we are so if that part is still working it's trying to do it's job, ya know?

[Guest Alex]

I've had short periods - days, maybe weeks when I felt better, I'm still hoping for a big improvement in symptoms.

Alex

[bizbiz]

I had 2 years symptom free. I actually thought it had gone away. Have been in a relapse for approx 5 months now.

[lynnie22]

Does anyone know what causes it to come and go? My neuro made me wonder if it was really POTS that I had when I was 25 and again when I was about 45. During each time I felt very dizzy and faint but never fainted, it lasted about 1-2 years each, I was exhausted, anxious and out of breath with real vision problems. I actually have no idea what it was -- diagnosed the last time by a neuro as having CFS but who knows. It just slowly went away.

Biz, do you have any idea what brought on the relapse, or helped it go into remission?

[bizbiz]

I wish I knew! I think I just got better with time last time. I got better over a two year period, so I never really noticed an improvement, just one day realised that I felt great and didn't even think about being sick anymore. As for this current relapse, I think it was a combination of stress, exercising too much and dieting. I was trying to lose weight for my sisters wedding (don't know why - wasn't even overweight in the first place!!), but I think that plus some other additional stress was just too much for my body to handle.

The last specialist I saw was suprised that it had gone into remission and has sent me off to neuro to get tested for MS. However I have heard that a certain percentage of people do wax and wane. I'm just hoping that if it went away before, it will go away again...?

[ramakentesh]

Im a definate wax and waner. It pretty much went away for me for about 3 years at one stage. I can get a relapse in ten minutes - from feeling 100% normal to nearly fainting and all the symptoms. Wish I knew what would make those relapses go away

[AussieOI]

Biz thats what I am thinking. I actually do think that it will go away at some point. It could return but I suppose its just trying to make it stay away

[ramakentesh]

When you work out how to do that let me know

[boymommy3]

I am starting to think I am not suppose to write this post! I have tried twice and something keeps happening to my computer and I keep having to start over!

Anyway, I am much like AussiOI. Two years ago in January was my first onset, I believe. I hadn't been feeling well for months. I have had thyroid problems for years so we always blamed everything on that. That time, however, I kept telling my husband that it wasn't just thyroid. I had had thyroid problems long enough to know what my symptoms were for that. I ended up in the ER with my heart racing and my entire body stiffening up. They discovered I had very low potassium and admitted me for a few days while they got my potassium levels back to normal.

After they sent me home, I wasn't getting better though. That was when my GP first told me she thought I had POTS. I went to a cardiologist who wouldn't even entertain the idea. He had a really great explanation about how it was still my potassium even though my levels were normal now. So...I let it go. Not even thinking about POTS anymore. I had never heard of it anyway so it just didn't stick in my mind. We did also discover that I had very low Vit. D. I also began to supplement for that and after about 6 weeks I felt completely better. It was like a light switch really. One day, everything was gone and I had never felt better!

Last winter I had some mild issues.

Fast forward to this year.....I got the flu in December and BAM....one night it ALL came back. It was terrible!!!! This time however, Potassium was completely normal and Vit. D normal but on the low end. Again, my GP said POTS and this time I began to listen and research what she was talking about. It made complete sense! I had SOOOOO many symptoms of this and every other test they have run has been fine. She started me on BB and that quickly worked to settle my hr but so many other symptoms have been unbearable. So this time around it's been since the middle of December and I am just now having days that I feel functional. I still haven't been formally dx's but I am planning to schedule a TTT after I see my endo.

Incidentally, every time this happens to me, it's in the winter. Other than that I don't know. The first time I have no idea what brought it on. I don't know if the low potassium could have done that or what. This time it seems to be the flu that was the trigger and it's been terrible.

[badhbt]

I had ten years without a relapse. My first flare lasted about 2 months. I didn't know what it was at the time ( we initially thought ms) and it mysteriously went away. I know a bad illness/virus triggered it.

I have been in this flare for 7 months now. I am like BIzBIz, I think diet and exercise triggered it for me this time. I was pushing really hard to lose weight. I was working out twice a day and I was on a strict low fat diet.

[Enid]

I had had mild vertigo, headaches etc after my pregnancy in 2006 and then my symptoms got much worse, with near constant tachycardia after a bad gastro virus in winter of 2008. I finally got a diagnosis in summer 2009 and was treated conservatively and did almost daily exercise (walking mostly) By about August 2010 was virtually symptom free. I felt I had "walked my way" out of POTS! There was a good year and a half symptom free. Unfortunately symptoms came back, worse in fact, in December 2011. I attribute the relapse to increased stress at work with a concomitant stopping of my lunch time walks. So I got myself back into the routine of more exercise (recumbent bike this time) and thought I would work my way out of this episode as well....unfortunately did not go as planned and I ended up started beta blockers in November 2012. Still not where I had thought I was going to be for 2013 but I still have hope I can get to a place a little closer to the "feeling well" end of the spectrum. I am Just coming to terms with the chronicity of this which is a bit of a pain given I thought I had "beat this". The thought of feeling "well" again for even 6 months or so helps me to keep up with the exercise.

[lynnie22]

Just to relate to BoyMommy3, the definite trigger for me although if it was, it came on very slowly, was the removal of my thyroid six years ago and a never balanced thyroid hormone level.

It seems as if quite a few of you have had waxes and wanes, and there really are triggers that bring it back, but so delicate.

I am hoping to get better, although since diagnosis three years ago, I have only gotten worse. There are good days and bad days, but always the same racing heart when I am upright and now this blood pressure problem. What I know I don't do enough of is exercise which I find exhausting but I've lost twenty pounds over the last few months and I think it's muscle atrophy.

Ten years without a relapse, badhbt, is great! Hope this flare gets better soon.

Apparently any stress or overexertion on the system can do it.

[E Soskis]

Interesting how different and varied we all wax and wane. I don't have POTs but, have AAG (autoimmune) - for the past 2 years, I have been receiving plasma exchanges to remove the "bad" antibodies. I receive them about every 2-3 weeks (roughly the life-cycle of antibody production) - I can tell when the antibodies begin to build up as the time draws closer for an exchange. The dysautonomia begins to worsen and the symptoms increase dramatically. I still have episodes of flaring - even when it is not time for an exchange. I've tried to pin-point the triggers and have only identified three things so far: fatigue (tired, stressed-out); sugar and fats. Simple sugars (desserts, sodas) and foods high in fat seem to make things so much worse. So for me, the answer is to avoid getting too tired, cut out the simple sweets, and stick to a lower fat diet. I don't know what I'll do when the plasma exchanges quit working - there really isn't any other treatment. I've done the immune globulin thing and can't do that anymore......so, .as the song says...."one day at a time sweet Jesus - that's all I'm asking from you!"

I don't think there is any age limit to dysautonomia and related conditions. In fact, I think most of us have had symptoms for many years before properly diagnosed. This forum has a wide-range of ages that contribute. Autonomic dysfunction is actually a condition of aging - and can be exacerbated by certain medical conditions associated with age: example, diabetes. For a physician to say someone is "too old" to contract the disease is not logical. Barbara Walters was "too old" to contract chicken pox, yet, she managed to come down with it. A child is "too young" to have cancer yet, just look at the children afflicted with the various cancers.

[Relax86]

I have periods where I get better. I think it's official that I'm a dysautonomia case at this point. I was here at the forum in 2009 but got so much better that I thought I didn't belong. Deleted all my POTs articles and went on with life. Both of my flares happened in January and both after job changes - one job change made me ecstatically happy and one made me terribly sad so I can't correlate to emotion but maybe stress??? That being said this second flare landed me in the hospital for 4 days and I believe I had way too much bloodwork causing POTs. I'm no longer officially POTs but my Dysauto symptoms are still an issue.

I also think that I've been a lifer so to speak b/c I remember symptoms like I'm having now in other periods of my life and I just blew it off to being over fatigued and being a neurotic stress-ball. Additionally I had some orthopedic surgeries as a kid and I remember my Dad always saying I didn't bounce back like the other kids who had surgery on my day. And now I believe I respond poorly to blood loss. I just don't think my body regenerates RBS's well. I was tossed out of the red cross when I was 21 and no longer eligible to give blood for constantly being anemic and I never addressed it.

Today I take 2 iron pills a day and I'm always low.

I never know what makes a good day or bad day. But I'm 85% better and can do most of what I want when I pick my battles. A forum poster from a year ago had said that he feels crappy all the time so he decided if he's gonna feel like crap sitting home he might as well feel like crap doing his normal routine and overall would mentally be happier. Because I'm one of the luckier ones that can function - then I do. I actually have more symptoms the days when I'm sedentary. My blood likes to flow so I let the good times flow.

[lynnie22]

Hi Relax,

It's so interesting to remember back -- at times when we had symptoms but didn't think of it that way.

If I think way back, I can remember two distinct periods of time, with stretches in between, when I had many of the symptoms I have now, but without being aware of the tachycardia on standing. If they both were precursors of POTS or POTS, then I've had waxing and waning. If not, I've been on a steady course for three years. My HR goes up every morning as soon as I stand, without a day off, and continues to rise unless I take a BB. When I first went to MAYO it was only 105. Now it is 130. I think it may be the effect of using BBs. I take then in short acting dosage and so I don't wake up with them in my system.

Anyway it's interesting to hear your stories.

[ramakentesh]

My first recollection of a symptom was getting giddy for a few days after I got a stomach bug when I was 16.

then I was unusually tired for a while in university.

but in 2003 I was 100% well and then bam! Full blown pots. It was very bad and I suffered a myriad of symptoms. Then 4 months later it suddenly went and I contracted ankylosing spondylitis. It resolved and pots came back to a degree but gradually improved by dec2004.

I went and lived overseas but it came back again in Nov 2005. I exercised this time and it quickly seemed to go in partial remission. From Feb 06 to Nov 08 I nearly had zero symptoms! Got on with life, played soccer, joined a band, even ran long distances.

then I went to Mexico and got a virus that gave me suspected autoimmune hepatitis and within a week of returning it hit me like a truck and I've never been the same. I didn't get it under control for 16 months.

then under stress it came on again in Dec 2011 and I was completely incapacitated for four months, settled down and relapsed again two weeks ago after the birth of my child and zero sleep for 10 weeks. Last three days I can barely stand...

[ramakentesh]

So a total rollercoaster that has made my continued employment very hard...

[AllAboutPeace]

Congrats, on the birth of your child, Rama!

For all of you that are on that wax/wane cycle, it must be really tough when it hits again. I've only had it for 16 months (seems like a lifetime but compared to some of you it's nothing). My functional level is still pretty low but as long as I was having even the tiniest baby steps forward, it seemed somewhat manageable. After 11months I was able to drive short distances again with meds, but the last few weeks I've had to give it up again. Soo frustrating when you can't alter the course in any way...

[ramakentesh]

over the years ive noticed some patterns. the wax and waners (who sometimes get to almost completely normal in between if lucky), the wax and waners who slowly improve, the ones who have it for 3-5 years constantly and then get completely over it, and those that are always sick and never better and sadly some that appear to progress.

[lynnie22]

sorry you've had it so tough lately, Rama. It's interesting you noticed three groups. IfIcould figure out the other two times I was sick whether they were actually POTS, I'd know where to group myself. Yes, work has sure begun a challenge. Thank God I sit for a living, but all the rest, especially this erratic blood pressure, gets in the way.