Do you get symptoms EVERY time you stand?

[persephone]

I don't get symptoms to the same degree all the time- some weeks I can be ok. Others, horrific.

I just wondered how many other people are like me. Look at my grad week only 10 days ago--I felt and looked amazingly well.

But now--well, the number of times I've lost my vision today is in double figures. I know overdoing it has cost me dearly, but I don't care so much--it was worth it.

It got me thinking- do Doctors expect us to collapse/get faint every time we stand? Is that why maybe so many dismiss us as nuts? because they think it can't wax and wane the way that it does?

what do you guys think?

[MomtoGiuliana]

POTS symptoms typically wax and wane to some degree. Some of us can identify definite triggers (such as inadequate rest, etc.). Others don't see a particular pattern associated with the ups and downs.

Doctors who don't specialise in autonomic dysfunction don't understand many things about it! I would agree that one issue that makes it even harder to understand, diagnose and treat is how variable symptoms can be for some patients from day to day or week to week. My general practitioner and one ER doctor I saw once told me essentially that POTS lasts several months and then clears up, in the majority of cases--this may be the prevailing view right now--even though we understand differently.

I think most doctors definitely are not aware of the variety of symptoms caused by autonomic dysfunction. It is easier to label those symptoms as associated with anxiety, apparently, than admit they don't know something.

Katherine

[persephone]

you've got it well sussed, Katherine! It really riles me how we know more than super rich doctors on some things they supposedly specialise in!

[Madwife]

you've got it well sussed, Katherine! It really riles me how we know more than super rich doctors on some things they supposedly specialise in!

<{POST_SNAPBACK}>

Katherine I agree 100%. I am a health professional but I still get treated like an absolute nutcase when treated by fellow colleagues whom show me respect within my working environment but think my condition is psychological. So what am I a competent health professional and part time nutcase on the verge on a nervous breakdown, who therefore decided to make up a few things regarding my health and fall on the floor a few times just to impress them???? Who's the nutcases...personally I think it's some of my fellow colleagues the Doctor's. Although I am a bit of a nutter I have to admit!

I'm sure we have all experienced this at some point through our illness but does anyone else find it really frustrating that those Doctor's without any true knowledge of the condition automatically assume it must be anxiety or depression related?

[Ernie]

Hi Persephone,

When I am without medication I faint everytime I stand and before I was diagnosed doctors thought I was a nutcase. Even the top Canadian Dysautonomia specialist diagnosed me with Munchausssen saying that nobody can be "naturally" that sick and that I had to be poisoning myself to get medical attention!

So to doctor it does not matter that we have symptoms sometimes or all the time. What matters is that we have symptoms that they have not heard about in med school thus we must be making it up for some emotional reason.

I can't wait for the day where we will get recognition from the medical world. For the time being we have to get the best of what is available (meaning finding the best knowledgeable specialist).

Ernie

[Poohbear]

I get very frustrated that many Dr's say this is just anxiety (like even if it was "just anxiety" that's still a REAL problem that needs effective treatment).

I think Dr's are trained to brush things off as "stress" or "In your head" (like your head isn't a part of your body???) when THEY don't understand something. They are trained to look for the concrete evidence (lab values and tests). If you think about it police are trained this way too. Police often are skeptical of a victims story until they find "facts and evidence" (in other words, if a woman is raped but it wasn't physically violent or obvious then it's "he said, she said" and many times the victim isn't believed or is extensively questioned). So...it's not limited to the medical community but it is terribly sad and damaging.

Ok....I'll get off my soap box now

To answer Persephones question-- my symptoms often wax and wane and shift. I've always had a struggle but I was able to work for nearly 5 years after having my pacemaker implanted. Then about 1 1/2 yrs ago things got suddenly much worse for me and I became unable to work again (I have no explanation for why things took such a rapid and quick decline).

It is frustrating!!

[hayley]

hey persephone,

My symptoms are like a yoyo.I can be lying down and my heart will beat fast and i feel dizzy 10 minutes later it will go, and it happens like that all through the day.whether im lying or standing it doesnt matter.Im alright between the episodes just abit tired.But i never have a day without my episodes.Maybe i am just strange because pots people seem to get symptoms all day.

Alot of people dont understand pots.

h x

[BallroomA]

I come and go too...I know when I push myself that i will pay dearly for it days after. I've had doctors see me one week and call it a miracle recovery but then 4 days later I am laying in the ER!! Alot of doctors see things as being in your head...I haven't been able to find a drug that agrees with me so its not helping the situation with Doc's.

In a way until the medical community accepts this disease more and learns more information on it I think its going to be an almost self-treat thing that we learn to cope with on our own.

[DSM3KIDZ]

I also live the rollercoaster life. My symptoms come and go over weeks. Example- I'll feel 100% for 2 weeks and like complete dodo for 3 following. Sometimes the dodo time is alittle less sometimes it's more but it's always followed by at least two good weeks. So when I'm doing bad I just sit and wait for the good. The only really hard part is dealing with my emotions because when I'm down, I'm emotionally down. When I feel good I'm emotionally GREAT!

I still don't have any triggers, I'm clueless!!!!!!!!!

Dayna

[Christine]

In my case I feel like I live on a constant roller coaster. Sometimes I am great and I just loose my balance a little and other times I am on bedrest. I do know that I my body does give off symptoms and I have learned to listen to my body. I also learned that my body tends to cycle.

I agree about doctors in general. I have had my share of doctors who think that I had a mental health issue. I am so happy that I have found out that I have POTS because I now know that I am not crazy and the doctors were wrong. It is a very good feeling to know this. I always have pleasure in knowing that I know my body better than they did. I have been dealing with POTS for over 11 years and now I finally feel as if I understand.

Best luck to everyone!

Christine

[Lukkychrm42]

I'm with Christine.. except that I'm still learning my limitations. I haven't left the house this week except to go to the pharmacy or to work.. and when I'm at home I've either been sleeping or sitting and reading/ watching TV pumped up on midodrine.

I started seeing this new doctor last week who basically just listened to me for about 45 minutes, seems to have heard of POTS, but didn't connect it with dysautonomia and thought that my IBS might be "causing" the heart issues (with the whole blood pooling/hypovolemia/diabetes insipidus thing), so he referred me to a GE and someone else (not sure- didn't catch that part.).. At this point I'm just like- yeah, whatever.. you don't really get it but if you'll work WITH me, then maybe it'll be alright. Not that I care, cuz I'm going to Vanderbilt in 2.5 weeks and I'm only home for the summer.

I've had pretty good luck with specialists so far, but my PCP probably thinks I'm crazy, cuz she doesn't think there's anything wrong with me.

Still, when I get asked if it's ALL the time, it's not every single time I get up that I feel something. It's every day, most of the time, worst from about 8 am until 5 pm. I don't remember the last day I had that I felt 100% "normal." Still, some days are better than others.

About doctors, though- it's been said before, it's just easier for them to ignore a problem than for them to admit that they're wrong or admit that they don't know something.

[Christine]

Goodluck, Lukky. I understand completely about doctors in one ear out another. Their ego does tend to get bruised when you actually know something they do not.

Take Care,

Christine

[Sunfish]

not sure how i missed chiming in on this one as it is pretty much the "story of my life"...i like the already-used roller-coaster analogy...for me it applies over years, months, days, hours, minutes....LOTS of ups & downs (literally & figuratively!)

currently i do have symptoms every day & every time i try to stand for more than a few minutes, but they vary greatly in their degree. whether i have symptoms sitting & how long it takes is sometimes yes, sometimes no. at times when i've been doing well...a year or so ago...i know that i would eventually be symptomatic but the amount of time it would take had a large variance. many years ago when i had NCS but not POTS i would be totally fine on many many days.

and yes, i agree that this makes the diagnosis & treatment of everything even tougher. sadly enough i've had a much easier time (in terms of docs, etc.)of it this year & at other times when i've been more ill b/c of the fact that my signs/symptoms were/are a constant thing. outside of the medical community the ups & downs of everything also makes things tough with family, friends, life in general. i have such a hard time planning anything b/c i never know how i'll be on a given day, at a given time, etc. some things are guarantees to make me worse but often i have no clue why it's a better or worse day for me. any of the autonomic docs i've seen over the years have affirmed this as the "norm" in the autonomic world...

i've often said that in some ways i would have an easier time dealing with a more "permanant" impairment that was more consistent. not to minimize the difficulty of such a loss at all, but just b/c i would know more what i was dealing with & could move forward as such...the variability is one of the toughest things for me.

:-)melissa

[becky]

my symptoms go like a roller coaster aswell i'm just getting used to my triggers but there seem to be even more than there were last year, does anyone else get that? and i have even more symptoms, like just when i'm starting to feel good i get chest pains out of nowehere - i don't understand it.

Oh and ernie i'm with you my doctor asked if i'd heard of munchausens, and even after i was diagnosed with pots my gp said that they should still investigate psycological illnesses!

[DSM3KIDZ]

Sunfish - I agree with you completely. That inability to plan anything and never knowing how you'll be on any given day is also the hardest part of this for me. Like I've mentioned, I'll be great almost normal for 1 or 2 weeks than sick for two or three. But I have never gotten through a complete month of feeling good. Than when I'm down it takes alot to get better. Basically I feel like I get a bad flu every month. I always get anxiety wondering when it will be bad again.

Also family don't understand the ups and downs. I'll be soooo extra happy when they see me than next time I'm sick. I really think alot of my friends think it's in my head. They always say "your sick again"

Dayna