Changing The Name

[ramakentesh]

Im sorry but POTS just sounds so stupid. When they finally have definitive answers for the causes of POTS and have concensus on the breakup of the different forms of this illness Im really hoping they change the name.

I guess OI is ok, but it sounds so benign.

[shadesofgrey49]

I definitely agree. It's very hard to explain to healthy people and doctors who don't know what it is. It sounds like something that patients grabbed out of thin air when they needed a name for their mystery illness.

OI is no good because not all POTS patients have orthostatic intolerance.

[Sophia3]

Call it "dysautonomia"

If you think POTS is bad, try walking around with the definition of "Chronic fatigue syndrome" for 13 years before having a TTT confirm autonomic problems. CFS is like calling diabetes Chronic THIRST syndroome.

changing the name is not going to fix us..and orthostatic intolerance is something astronauts suffer from when they return from space...so I always use them as an example saying I have chronic version of what they suffer from for a few hours or couple of days.

[MelissaCrystal]

I assume people aren't going to care what POTS stands for and it also sounds really silly, so I always say I have "Dysautonomia, which means dysfunction or deregulation of the nervous system." Then that usually gives them an idea of how vast the symptoms can be, that is if they know anything about the nervous system.

[delphicdragon]

I completely agree that the name should be changed! When I was first diagnosed in college, the question I was most often asked when I told people I had POTS, was "Can I have some?". Sigh.

There's nothing good with a disease being named after 1)an illicit drug or 2) a cooking vessel.

I like Dysautonomia, though I have a hard time pronouncing it and my tongue gets stuck on the word.

I think saying that my heart and nervous system are fighting is a good explanation, but that still leaves me without a good name.

Sara

[Ernie]

Hi,

I agree that dysautonomia is better because it reflect more what we have.

POTS just talks about HR and it is much more than that.

[Katja]

I have a diagnosis of unspecified dysautonomia. my doctors think it may be POTS, but whatever diagnosis they give me, I'll probably keep telling people that I have ANS dysfunction. it does give people some sense of the scope of it - more so than saying that I have tachycardia or hypotension when standing up.

[flop]

I use the "dysautonomia" type name but break it down and actually say "autonomic dysfunction" to most doctors that I see. To friends/family/random people who ask what is wrong with me I expand by saying "in healthy people the autonomic nervous system controls all the things your body does automatically like heart rate, BP, digestion and temperature control - for people like me the control system doesn't work so my body goes haywire, especially when I am standing upright".

I know that the above is an explanation rather than a name but it works for me. The problem with POTS is the S (syndrome) which simply means "collection of symptoms" there can be any number of causes for our symptoms and until more is known about the causes and mechanisms of our problems I doubt that a satisfactory name will come forwards.

The good thing is that it is no longer called many of the historic terms such as "Soldier's heart" "asthenia" "irritable heart" "da Costa's syndrome" (reading about the history of POTS / dysautonomia is interesting!).

Flop

[Sophia3]

the doctor I see has NEVER EVER called it POTS and he knows more about autonomic problems than most docs (he is an endocrinologis and sees MANY diabetics who have ANS problems)

He has always called it autonomic dysfunction, as did the cardio that gave me the TTT results on a follow up.

On the other hand the cardio that stood in for the TTT said my test was "Non specific" because my BP did not plummet and I did not faint...but my HR LEAPT 55 beats in the first THIRTY SECONDS!!

So autonomic dysfunction is poorly understood in the same cardio group sometimes...but Autonomic nervous system problems is another thing to call it. Tell folks they have a Central Nervous System and and Autonomic one that runs 'things in the background automatically' that keeps us alive...respiration, HR/ BP, digestion, body temp regulation and its out of whack and causes a cascade of other problems.

But in general I say when astronauts come back to earth and into gravity, they have problems for hours or a couple days of weakness, dizziness, trouble walking and standing, nausea, racing heart and visual blackouts or fainting,etc. And that for some reason I have developed a chronic version of this.

That's usually enough in a nutshell..and I say hot stuffy rooms are major trigger as is standing in a line or for ME sitting upright with feet on floor. THUS when I go out to here music or eat, I put feet up on chair, or sit sideways in a food booth or will hug one leg to my chest and put foot on chair. I explain my rude manners are a coping mechanism.

It's enough...also my autonomic dysfunction doc said "do NOT try to explain this to strangers just say you are prone to fainting, that gets their attention"...even though we know I get plenty of notice I am getting faint.

The less we have to say the better. I love the word Dis -auto No mia...nobody has ever heard of it and say it in a mirror until it rolls off the tongue.

Just like they NEVER changed the CFS name in this country but have proven it is debilitating..especially those of us with sleep disorders and 'autonomic dysfunction' which can be DOCUMENTED if the docs know the right tests and MORE IMPORTANT, the correct interpretation.

[Mary P]

We could go on and on about neurodegenerative conditions/syndromes/diseases, etc. How do we even begin to learn or explain the difference between Condition, etc, etc.

Try telling someone about Shy Drager or Mulltiple Systm Atrophy with Autonomic Predominance and some Parkinson's symptoms. I simply say, "all my organs are slowly breaking down, and I don't know why.

I get tongue tied just trying to get it out of my own mouth. If I say it with an exagerated expression and it becomes a good exercise for facial muscles.

Mary P

[iheartcats]

I'm trying to quit saying POTS because people think it's funny/weird/don't take it seriously. It's just an added annoyance.

It's a debilitating disease, so it's not to be taken lightly. There is some level of disability people experience even with Mild POTS & it just gets worse the more severe it is, not to mention flare-ups.

Sometimes I'll just say ANS-related condition called Postural Orthastatic Tachychardia Syndrome.

POTS is ridiculous, too many other connotations with it. It's just my luck to get something with such a silly name.

[MomtoGiuliana]

My specialist also never calls it "POTS". He calls it autonomic dysfunction.

I agree that it is better not to use an acronym that most doctors don't even recognize.

[jump]

Wait!!!! Not all people with POTS have OI?? How is that possible?

The definition of orthostasis is a 30 bmp change between sitting and standing or a 30-point change in bp right? And isn't OI defined as chronic orthostasis? So... wouldn't it follow that a diagnosis of POTS would have to include OI?

I was diagnosed with OI before being diagnosed with POTS on the basis of hr change; my doctor considered POTS to be a more specific branch of OI. I was under the impression that OI is an umbrella term that encompasses NCS, POTS and postural hypotension.

Someone explain it to me if this isn't right!!

[flop]

OI vs POTS - it is exactly these sort of confusing situations where both doctors and patients get mixed up between the conditions.

Dysautonomia = dysfunction of the autonomic nervous system.

Orthostatic Intolerance (OI) = you develop symptoms when you stand up.

POTS = fast heart rate when you stand up.

(OI is a form of dysautonomia).

(POTS is a form of OI, and as such is also a form of dysautonomia).

POTS is a form of dysautonomia and one of the features of POTS is OI.

However not everyone with OI has POTS, and not everyone with dysautonomia has POTS.

Basically although most of us fit under all three titles, not everyone does and they actually describe different things or are more/less specific than each other. So you can't just swap the names arround. For example someone who when standing gets low BP (postural hypotension) but does not get a fast heart rate has both dysautonomia and OI but they don't have POTS. Confused yet???????????????

Flop

[firewatcher]

I've also had doctors ask me if I still "use" when I say POTS, or what else do I use. It is so annoying!

But then I've also had them ask if I take insulin for my diabetes insipidus too!

[momofsara]

I assume people aren't going to care what POTS stands for and it also sounds really silly, so I always say I have "Dysautonomia, which means dysfunction or deregulation of the nervous system." Then that usually gives them an idea of how vast the symptoms can be, that is if they know anything about the nervous system.

Melissa, dysautonomia is how I explain Sara's illness. You are right, it helps people understand a little better. Susan

[yogini]

I don't think that POTS is a great name, but I think that if people had heard of it, it wouldn't matter so much. There are a lot of illnesses, like MS or Lupus, that have abbreviations or strange names. People don't know what they are, but (for the most part) have some idea that they are real chronic illnesses. It would be nice for POTS to be recognizable. One can dream...

[Kitsakatsa]

My friend's husband is a Radiologist and thought I had POTTS (TB of the spine) instead. He told her not to let me in the house.

I hate the word POTS because it is too close to Potty. We jokingly call it POSSTS because that's what end up calling it everytime I'm sick and not thinking.

When the doctor first told me I had POTS, I said "ok, whatever, but why am I so sick". It didn't sound like any kind of serious illness and I thought it was something he made up. So, I never say the acronym. I say the whole phrase and then people blink and say "what?" and then I have an opportunity to explain more about it. I don't want people to think I have POCKS.

Kits

[shadesofgrey49]

Just yesterday a doctor thought I meant Pott's disease as well.

[ramakentesh]

yeah ive been asked if it was POTTS disease many times.

There is a massive sign near my house for a garden shop 'HAPPY POTS' - i dont think so!

[Kitsakatsa]

HAAA! HAPPY POTS! I think you should sue them. It sounds like a chinese dish: I'll have the #45, Happy Lucky Pots, please with a Diet Coke.

[summer]

CFS is like calling diabetes Chronic THIRST syndroome.

This is so funny and so true! The name CFS really leads to a lot of misunderstanding and minimizing of this disabling illness.

I never say "POTS" either. I usually say "postural tachycardia syndrome" and if anyone seems slightly interested, I write it down for them.