Maxine’s Dysautonomia Journey: Part 2
A woman's journey to get an Ehlers-Danlos diagnosis leads to awareness.

Maxine’s Dysautonomia Journey: Part 2

Check out part 1 of Maxine’s dysautonomia story here.

The ambulance took me to the hospital, where they not only started an IV but also began giving me blood. I had an internal ultrasound, and I remember the nurse having to remove a large clot before she could begin. Then she asked how far along I was. I told her I had already had my baby, and I remember a look of confusion cross her face. Sometime later, I was taken into emergency surgery for a DNC (dilation and curettage). I was given several bags of blood and released from the hospital the following day. After we were home, safe and sound, my husband told me that the EMT told him that had he waited to call any longer, I wouldn’t have survived. I feel very lucky to be alive.

Since that day, my body hasn’t ever felt right. I’ve had near fainting episodes off and on over the years. My heart will race, and my blood pressure is either too high or too low. I saw two cardiologists and had an ablation, where they “killed” a nerve that was misfiring inside my heart. I felt better, but not completely right.

A couple of years passed. We moved from Southern California to Tucson, Arizona, and the symptoms came back worse than ever. I’ve been to too many doctors to count and none could explain my situation. They blamed my symptoms on dehydration, lack of exercise, laziness, and depression. As time passed, my symptoms increased. Weakness, nausea, diarrhea, constipation, dehydration, exhaustion, racing heartbeats, high blood pressure, low blood pressure, and dizziness are just a few of the things I experience daily.

In the summer of 2007, I finally found a doctor who not only believed me but was intrigued by me. He placed me on repeated cardiac Holter monitors, ranging from one day to 90 days. When those showed nothing conclusive, he dug deeper. He seemed to trust that I wasn’t just making all this up. He decided to do another EP study. This time he found nothing but a perfect heart. Confused, he put an internal cardiac monitor into my chest that would monitor me constantly. Two years passed, and finally, in the summer of 2010, he diagnosed me with Postural Orthostatic Tachycardia Syndrome (aka POTS). It is a condition in the Dysautonomia family.

I’ll never forget that day.

He said, “I think you have this thing called POTS. There’s no cure.”

I cried with joy. I was so relieved to know that I wasn’t crazy, that what I was feeling was real and wasn’t just in my mind. He looked confused and I’m pretty sure he didn’t think I understood, but I didn’t even care. I was just so relieved to finally have an answer.

Many would say this is the moment that my life changed, but the story doesn’t end there. Yes, I finally had answers to what was happening, but I still didn’t know if it could be fixed or how to live with it. So, I continued to search for answers. Internet searches, support groups, a few random medical articles gave me a few answers, one of which was that there was a doctor at the Mayo Clinic in Scottsdale, Arizona that not only knew about POTS, but understood and could help. I called immediately and set an appointment.

But the reality was setting in. There is no cure. No cure. I thought I could handle that. Living like I was, I couldn’t though. To be honest, I could put up with some things. I could tolerate the random chest pains and the falling. I don’t even mind the palpitations and the tachycardia, as long as it doesn’t come often or stay too long. I even accepted that some days I couldn’t do what I had planned. But there are a few things that I couldn’t live with. The frequent nausea and exhaustion had to go.

When I set the appointment to go to the Mayo, I was excited and hopeful that they might be able to ease my symptoms. My first visit to the Mayo Clinic of Scottsdale was interesting and enlightening. While several people had told me what to expect, I still went in feeling uncertain. The facility is beautiful and everyone I met was amazingly nice and helpful. I first met with the neurologist, Doctor Goodman. He actually listened to me and wrote 2 pages of notes; tossing out the majority of the hundred-page medical file I’d brought him. We spoke, then he examined me, and then we talked again. He had several POTS patients, and I got the feeling he wasn’t sure I had it, but he didn’t dismiss me. He said that he wanted me to see a GI specialist and have several tests done and then we would talk again. I can’t tell you how relieved I was that he wanted to test me and then talk. He didn’t just make a snap judgment. He didn’t tell me I was crazy or that I needed more exercise or that I needed to drink more water. He just took me seriously. I was so happy with him. By the end of the appointment, I had a 14-page itinerary and a plan. And I had hope.  

The first test was an EMG; a nerve and muscle test. I’ve had them both done before and I wasn’t surprised by what they did. The next test was an ARS test or Autonomic Reflex Screening. It’s a four-part test and lasted about an hour and a half. The first part is the quantitative sudomotor axon reflex test. One sensor is placed on the forearm and three more sensors on the leg and foot. The testing is done by passing a small electrical current over the sensors to activate the nerves that supply the sweat glands. It felt like a burn or a sting. It was uncomfortable, but not horrible. The next two parts of the test were breathing tests. They put heart monitors on me and monitored my BP, HR, etc while I did different breathing things. I had to breath to a metronome and then I had to breath into a tube that offered resistance. The final test was a tilt table.  During this time, I also was scheduled to meet with the GI doctor and was scheduled to do a Nephrology/Hypertension BP Monitor. I wore it for 24 hours and then returned it. All this was just on the first visit.

My second trip to the Mayo Clinic was different than expected. We met with the GI doctor who was very nice and very smart. He listened and asked questions and we had an in-depth discussion about poop; we laughed about it. He said that most of my symptoms sounded like IBS and gave me a few things to try to help with that and a booklet the Mayo wrote and published in the subject. He did say that he was concerned about the nausea and wanted to take a look into that. To my surprise, they wanted to do the blood work that day and then scheduled the procedure for the following day.


About the Author: Maxine Keith has shared her dysautonomia journey in three parts. Check back tomorrow to view the next part of her story.

 

Have something to say? Comment here...

We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!

© Copyright Patient Worthy

Close Menu