Going To Be In Newspaper -- What Are Public "must Knows"

[Lethargic Smiles]

I am going to be in my local (small town -- it'll reach <100,00 people likely) newspaper. The article will cover POTS and mention my fundraiser.

We talk here a lot about what new POTSies, family members, and doctors should know, but what about just the general public? Ideally everyone would want to have an in depth understanding, however that is just not reality! My goal is for someone to be able to give a basic definition of POTS similar to how most anyone can give a basic definition of cancer.

What I really want to get across is that our autonomic nervous systems are often the root cause of all of this. When I explain it to people, I tend to emphasize how the autonomic nervous system controls almost every function of our body, therefore anything can go wrong. This results in the wide variance of symptoms with the one commonality being tachycardia.

I'd love your thoughts and concise ways to communicate POTS.

[margiebee]

Absolutely the fact that this affects all parts of our bodies, that's the part I have the most trouble with explaining to people. Usually they're like "but I thought you just had a heart problem???". I like to really emphasize that this illness affects my whole entire body in various ways. You could probably give a brief and clear explaination of what the autonomic nerve system actually is, I feel that helps a lot with explaining to people.

[Lethargic Smiles]

Margie, I like the idea of going in depth on the ANS rather than super in depth on POTS itself.

When I first explain POTS to someone, I always start with how it is caused by the ANS which controls all our involuntary functions. I get much better results than when I used to start with "Well my heart rate goes up to 135...." Instead I say, "Well my body seems to think it is being chased by a bear, reacts accordingly, and stays in the state all day long."

[Dizzysillyak]

I don't look at my orthostatic intolerance as dysautonomia. But most of my symptoms of 16 years went away

or are under control via diet or supplements. Or they've been explained by other labs my integrative doc ordered when I started seeing her 4 - 5 years ago. I take a couple

of drugs but they're for seizures, allergies and digestion.

The cause of my oi is still unclear but I have enough possible physical damage and labs to explain it.

I'm gluten intolerant with gluten ataxia (resolved via diet), celiac, hashimoto's and no telling what

else. I suspect my lbbb is from gluten too. Theglutenfile explains this.

Fwiw, I'd focus on telling people the symptoms of oi and how to do a pmttt themselves. Learning I had

Pots completely changed the way I run my day. Laying down eliminates my oi but getting my legs level with

my heart helps. At least if someone knows they have oi they'll know it's a real problem.

Good luck .. D

[looneymom]

That's great! I like your definition but add more symptoms. If the interviewer ask for a web site of a doctors article that explains POTS, give them the one you mentioned in your last post. I was able to find it. People need to know how it affects you, your family,and the caregiver that's monitoring blood pressures, heart rates, and new medications. This is a true roller coaster illness until you find the right medications and life style changes that need to be made. POTS effects everyone different, so there is not one set of medications that treats the illness. Hope the interview goes well and that you will be able to post the article on the forum soon.

[Lemons2lemonade]

I would stress that it gets confused for anxiety

[Lethargic Smiles]

I did the interview. I keep thinking of things to add and messaging her. It should be in print Monday.

[Freaked]

Yeah deffo mention the diverse symps, and how debilitating it can be. So often when you turn up to docs or hospitals with different issues they just write you off as a nut. I've been told 'somataform disorder' before, just cos my heart tests were normal and I was still having symps. If I see that arrogant sob again there'll be some words.

[Lethargic Smiles]

Sorry about the tangent everyone. But...

Freaked, I'm planning on writing a generic letter of what was wrong with me all of this time and sending it off to about 20 doctors. The cardiologist who I asked for a tilt table test and she refused, saying POTS is a ridiculous explanation for my symptoms, is getting a very special letter. At the same time, I'm going to write thank you letters to all of the doctors who, despite not diagnosing me, never doubted there was something wrong with me other than anxiety or depression.