Pots Is A Dumb Name In My Opinion

[futurehope]

Okay, POTS sounds dumb to me. How to do tell someone what is wrong with you?

Do you have any alternatives to saying POTS?

[Maxine]

Yes, any ideas?

Try explaining POTS, EDS, and CCI (cervical/cranial instability). It can be maddening---------- .

Maxine :0)

[futurehope]

There only one reply you can give in your situation....."I'm not well. Don't ask"

[flop]

I tend to say "my auto-pilot has broken"

Flop

[janiedelite]

I tend to say "my auto-pilot has broken"

Flop

Good one! I sometimes say I have a problem resisting gravity, or that my blood vessels are too stretched out. It's hard to describe this illness in a few words to healthy people.

I know this isn't exactly a new POTS label, but one explanation that I think helps people understand how I feel is to remind them how it feels to step up out of a hot bath. You're vessels are all dilated and you tend to feel dizzy. I tell them I feel like that all the time because my body can't compensate like yours can to posture and temperature changes.

[flop]

My sister's boyfriend says I have POTS = Persistent Over-Toppling Syndrome

Flop

[kayjay]

I Tell people that I have Dysautonomia. It makes more sense I think and there is some other medical condition that is called pots. Also for me I feel like Pots is just naming one symptom. I have many symptoms.

[futurehope]

Auto-pilot is broken !!!!

[flop]

The other medical POTS is Pott's Disease which is Tuberculosis infection outside the lungs, usually of the spine.

I was very confused when I first googled as I had got the spelling wrong!

Flop

[tinkerbella]

Those are funny!

most of the time I use one crutch and it's become a conversation, ice breaker for others to talk to me.

They say, " what happened to your leg?"

I tell them, "I have a neurolological disorder and the crutch helps me from falling all the time with my neuropathy, as I have Pots."

then they always think that I've told them I'm on Pot. We start laughing and we begin, "pots 101" and end up friends by the end of

the converstaion.

They say, "I'm sorry," and "I say I would have l never would have met all the wonderful people that I have met if it had been for Pots."

So sometimes it's a blessing and sometime if feels like a curse. I try to make the best of it all, because it's all out of my hands

and honestly I know I've said this somewhere, maybe here but I thought it was called POTS, because your on the toilet all the time.

When I was first dxed, I remember asking my cardio, "Is all this salt making my irritable bowel worse?" He said, "you have irritable bowel?"

I replied, " It was irritable before now it just plain grouchy, maybe depressed so is it the salt?" He grabbed my shoulders and said, "Bella, it's

the Pots, you need to go see the gastro person we'll get you right in, I'm so sorry that I didn't realize you had that problem." "Also, the mestinon

we put you on is making it worse , with you have have no other options." LOL! POTS!

Blessings BellaMia~

.

[Lizzegrl]

I tend to go with Dysautonomia - or say an ANS disorder and if they ask more, I tell them what the ANS does and that mine is broken. ;0)

[Maxine]

I know all about POTTS, as a couple of docs put this in thier records, so I googled it.

That wouldn't be fun to have-----sounds horrible.

[Guest tearose]

I say "autonomic nervous system problems, things that are automatic in you are manual in me""

[Dawg Tired]

I say "autonomic nervous system problems, things that are automatic in you are manual in me""

Pretty much what I say too.

[EarthMother]

I actually don't mind the word POTS. In california, I may be able to get government funding for a grow lab with my diagnosis. Medical POTS <> Medical Pot -- not the same thing. LOL

I say Dysautonomia. And if I really want to shut down the conversation I throw in more multisylabic words ... I have a dysfuction of the autonomic nervous system.

Or if you're in a mood you might try ... Its a relatively rare disorder, but based on the others I've met with POTS it seems to only effect highly intelligent, creative and compassionate people. So I can appreciate that you had not heard of it before.

;-)

[Maxine]

I love that EarthMother----

Sometimes I'm tempted.....

[chipper]

It is Dysautonomia. I don't get along with gravity. The problem comes from the medulla in the brain. Doctors understand this! Family members are different, I just tell them there is a problem with my blood pressure, of course some of them say it is her nerves, and they mean I am not sick.

[Guest brianala]

I usually say something like, "My autonomic nervous system - the thing that controls everything you don't have to think about, like breathing, heart rate, fight or flight response, and digestion - is broken."

People seem to get it, and it doesn't take too long to explain.

[ramakentesh]

My friends call it 'that dizzy S^%$' - I pitch to their level you see LOL

I usually tell people i have low blood volume - they seem to understand that better. Or i lie and just say chronic migraines.

[erik]

I might just wear a "My Mama Says I'm Special" T-Shirt from Bubba Gump Shrimp Co....

And this might be more catchy as far as medical acronyms go:

Posturally Upregulated Tachycardic Zebrinny

(A Zebrinny being a zebra/horse blend... referring to the medical axiom "If you hear hooves, think horses not zebras"... yet we're more like the offspring of horses that sewed their oats a bit erratically

On a serious note, gotta keep in mind that POTS comes from a multitude of pathologies so naming it for just one variant isn't appropriate... it's not always from the "deficient response of vascular bed" source. Some day when things are more pinned down factually, it might break into different diseases or perhaps "Type I, Type II" for some leftovers.

[Lizzegrl]

Actually Eric that is how Dr. Grubb explained it to me..lol

When the insurance companies and the medical community can all come to an agreement and more complete understanding, it might actually be better characterized as several different conditions/disorders but right now, they won't pay for things if they break it down too much, so POTS it is!

[Megan]

I go with POTS if it's someone important in my life. Explain the whole thing as best as I can. If it's someone who doesn't need to know, my fiance prefers to say that I have low blood pressure. He said from his experience (being a non-POTsy) people understand the concept of low blood pressure, but if I say I have a neurological disorder, people tend to think I'm nuts in the head. (which may be so, but that's not the point! :-p)

Meg

[Megan]

P.S. Flop, you're hilarious!

[Tachy Phlegming]

How about Fiels-Lijk-Uhrdieing Syndrome after the men who first recognized the constellation of symptoms of patients with dysautonomia?

Or TH(H)IPP-G(I)D Syndrome? (Tachycardia, Hyperadrenergism, Heat Intolerance, Photophobia [visual disturbances], Polyuria, Gastritis [or GI involvement], Dyspnea).

Tachycardia is mentioned first, it is associated with a mechanism (hyperadrenergism), and the acronym refers to other organs the disease affects. Those nomenclatural features would make the condition -- and its signs and symptoms -- hard to forget.

[sandymbme]

I always ask people to imagine the worst, most violent hangover they have ever had: Horrific nausea, headache, vomitting, diahrea, dizziness and room spinning upon standing, being unsteady on your feet and falling into everything, heart racing thrown in for good measure. WaLa: POTS!!!!!