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February 17th, 2015

More Than a Pinch of Salt

By In the Loop
ProcopioCrista804

Photo courtesy of Alyssa Campbell.

Crista Procopio had seen so many doctors and had become so frustrated with the lack of a diagnosis for her symptoms that she almost threw her shoe at one of them. That’s how she describes one particularly distressing medical encounter to our friends at Cosmopolitan magazine. That doctor, she tells the magazine, “told me I was PMS-ing.” She’d had her concerns written off one too many times.

Crista’s symptoms of dizziness, “unbearable chest pain,” and almost constant nausea had become too much to ignore. She had suffered chest pains from the time she was a kid, but she tells Cosmo she ignored them for many years because “no one else thought it was a big deal.” It did turn out to be a big deal when, during her freshman year of college, Crista became so ill that she couldn’t get out of bed. She threw up so often she lost 20 pounds. Things were so bad she temporarily withdrew from college and began to look for answers.

Her quest eventually led her to Brent Goodman, M.D., a Mayo Clinic neurologist in Arizona. “I knew that I was suffering from a serious, physical illness, and I decided to go to Mayo Clinic because I knew that they were used to dealing with difficult health cases like mine,” Crista tells us. Dr. Goodman considered Crista’s full range of symptoms (nausea, fatigue, chest pains, numbness in her fingers and toes, problems regulating her temperature, tachycardia, dizziness and severe migraines) and told her that she fit the criteria for postural orthostatic tachycardia syndrome or POTS. Dr. Goodman tells Cosmo that while it’s not clear why people develop the condition, “there may be genetic factors that predispose individuals to develop it.”

Unfortunately, diagnosis was the easy part. “Currently, there is no cure for POTS,” according to Dysautonomia International, a nonprofit organization Crista volunteers for. But while she doesn’t have a “grand treatment plan or anything,” Crista says, “at least I have some answers -- finally!” And she isn’t letting her condition stop her. She graduated from the W. P. Carey School of Business at Arizona State University and now is business development manager for Redox Diagnostics LLC and business coordinator for Trinity Consultants Inc. She also started an online support group for people with POTS called “With a Side of Salt“ (for good reason). Her diet now includes a whopping 10 grams of salt each day, one of the ways she is managing her condition.

“What I love most about my Mayo Clinic experience, is how everyone works together as a team,” Crista tells us. “Every time I walk into Mayo Clinic, I can honestly breathe a sigh of relief. I know that whatever crazy health issue I am currently dealing with will be taken care of and everything will be OK.”

We will breathe a sigh of relief if you share your thoughts below and share this story with others using the handy social media tools.

Tags: Dr Brent Goodman, dysautonomia, Patient Stories, Postural orthostatic tachycardia syndrome, POTS

Comment


Meme
@mefixitwell

Posts: 1
Joined: Feb 19, 2015
Posted by @mefixitwell, Feb 19, 2015

My Granddaughter has POTS but it took a lot of miss diagnosing and saying she needed psych treatment before being properly diagnosed. We think it started when she was 10. Now with diet, chiropractors and a holistic medical center, she is able to function almost normal most of the time. She is only 20 now. I hope she will still see some progress in the future.

Liked by Laurie


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Feb 19, 2015

O my why is it that all
these new or old decease s with the brain have no cures.if
this is a older conditions why no cure??
So sad.
I’ve been sick for 2 years i think i found my
condition. That dr didn’t.


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 26, 2015

Jennifer can you at least tell us what was
done to help with some of your illness.
reading problems without any solved problem is not saying
much. There are a lot of people with the same or worse conditions. Please share thanks sandra in need of doctors.


Jennifer
@jld0626

Posts: 1
Joined: Feb 19, 2015
Posted by @jld0626, Feb 19, 2015

I shared this with my friends last night after reading this article.

In December I was told I have POTS/Dysautonomia like the young girl in this article that just so “happened” to show up on my Facebook page today. So I decided it was a sign that it was time to share my story with my friends. I’ve struggled for years with so many different symptoms, telling doctors over and over again that something wasn’t right. So unbelievably frustrating how many times I was dismissed or treated poorly by doctors. It wasn’t until an medicine-induced illness in September that symptoms presented enough to catch it. A tilt table test revealed a heart rate increase of 41 beats a minute upon standing and another test (metabolic functioning test) revealed I’m only reaching 53% of my energy (metabolism) level. My sleep study revealed multiple heart rate spikes during the night. My blood pressure was low, I was experiencing dizziness and heat intolerance. I was experiencing anxiety and panic from all the body changes. I felt like I was losing my mind and there were plenty of doctors who were quick to judge and dismiss me. I really resented the illness that landed me in the hospital for three weeks in September at first because it turned my world upside down. But through it, I found God, discovered what was really going on medically and finally felt vindicated. And I believe God is mapping out a bigger purpose for me, one where my experiences can help others. I’ve been encouraged to share this by many but honestly was scared to out of fear of rejection or being misunderstood. However, nothing good ever comes out of fear and change never happens if we don’t talk about things openly. So If you are going through something, trust your gut, seek answers, research, ask questions. Don’t ever give up on yourself. God allowed me to fall just far enough, to put me in the precise circumstance I needed and then put the right people in place at the right time to catch me. He brought me to my knees but then showed me the way forward. I’m now with a good doctor and receiving nutritional support and biofeedback.

Liked by Laurie


Laurie
@laurih

Posts: 5
Joined: Feb 20, 2015
Posted by @laurih, Feb 19, 2015

Hello! I’ve had those tests also. As a nurse, it struck me that no one has mentioned a metabolic functioning test! Thank you! I’ll be looking into that. I’ve always wanted them to kind of tell me I have hypothyroidism, so there’d be something I could take to help my metabolism. Sounds strange coming from a nurse, but I’m so tired, that I just want my metabolism to take off! I’m sure I’m not the only one that feels that way. Thank you!!!


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 25, 2015

What else do you have or are you well
now


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 25, 2015

Jennifer did you get any relief or signs
of well being please post


Laurie
@laurih

Posts: 5
Joined: Feb 20, 2015
Posted by @laurih, Feb 19, 2015

I enjoyed your article! I’m a nurse, and I didn’t get POTS until after I had C-diff at 46. I have the same symptoms, and was fainting a lot too. It’s still hard for me to stand very long. I’m going to be tested for MCAS too. It’s called Mast Cell Activation Syndrome, and a lot of POTS pts. also have it. There’s a blood test they can do to check your Tryptase level. (A protein that comes from protein) I get a lot of hives, itching and allergic reactions too. Maybe this test will show something for me. I pray they find a cure for P.O.T.S.
Blessings! Laurie


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 26, 2015

Please post new treatment t&anks


Laurie
@laurih

Posts: 5
Joined: Feb 20, 2015
Posted by @laurih, Feb 19, 2015

Loved your article! I’m a nurse with Dysautonomia/P.O.T.S. And would love to be a part of the advisory board. I was 46 and had C-diff, then POTS.


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 25, 2015

Are you well now


Laurie
@laurih

Posts: 5
Joined: Feb 20, 2015
Posted by @laurih, Mar 25, 2015

The extreme fatigue/sleepiness is being treated with Ritalin, so yes, I’m feeling much better and BP isn’t dropping now. Go figure! 🙂


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 26, 2015

Thanks I’m so glad that you
Receive đ the right meds.
Are you still se native to
Heat and what to dò. Are you
With a neurologist near home.
Are all of your systems taken
Care of;


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 26, 2015

What will take away the
Heat sensation and when
Will the pain go away.
Did the hospital help


sands
@sands

Posts: 18
Joined: Feb 19, 2015
Posted by @sands, Mar 26, 2015

How are you treating your problem with heat cold

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