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Meet the Member: Rachel's Story


by Chelsea Goldstein

Our featured DINET member, Rachel, invites us to the Southern Hemisphere to learn about living with Autoimmune Autonomic Ganglionopathy (Seronegative) (AAG) in New Zealand. While some current political discourse highlights hard differences between peoples, Dysautonomia makes no such distinctions—often operating invisibly and affecting individuals all over the world. Rachel’s story reminds us that, despite our geographic distance and individual circumstances, the highs and lows brought by Dysautonomia are more universal than we may think.

Rachel experienced symptoms of Dysautonomia from a young age that became slightly exacerbated in her teen years, though she always felt they were manageable. In 2008, a virus triggered an autonomic flair that led her to see a cardiologist. This visit began her four-year diagnostic process in which she learned that her fainting spells were truly asystolic episodes. Her cardiologist implanted a pacemaker and diagnosed her with POTS.

During the darkest time of her experience with illness, she was told her condition was progressive. A career woman and a relatively new mother—her life came to an unexpected, abrupt halt. She lost her job, her marriage struggled as both her and her husband tried to grasp the uncertain future, friendships dissipated and, in retrospect, she realized her sense of self grew increasingly lost among her overwhelming circumstances. She feared, “dying, or worse ending up in a nursing home” unable to care for her two young children. Despite her insurmountable struggles, Rachel held an instinctual feeling that something about her diagnosis was not quite right. Thus, she self-educated and sought a second opinion from an immunologist who correctly diagnosed her with AAG, as well as provided more clarity, and hope, for her future.

Rachel’s symptoms began to slowly improve with a proper diagnosis until her AAG went into complete remission. She feels her current quality of life is surprisingly better than it was before chronic illness. Now, she approaches others with a new sense of empathy and thoughtfulness. For all that Dysautonomia taught her about the universal human experience, part of her still sees it as the “questionable ex” who could return at any time to threaten the life she has rebuilt.

I have heard Dysautonomia described in this polarizing manner many times—it is both a great teacher and a source of continual fear. We are thankful for the lessons it has taught us, and for the perspective it has provided us. But, simultaneously, we feel like we have had enough character-building experiences, thanks, and we do not welcome the opportunity to learn from Dysautonomia again.  All of us in periods of remission, or relatively good health, are moving forward while remaining keenly aware of our past experiences of illness. Every cough, sore throat, minor headache and moment of fatigue reminds us that it could resurface at any time. I have certainly experienced this fear, which I call Post-traumatic Dysautonomia. It’s often viewed as irrational by our loved ones, but for us, we know how quickly our health can spiral.

These sentiments of fear toward an uncertain future are all too real in our current world. One wrong play could set off a chain reaction of negativity, and we feel both responsible for keeping all elements of life, including our health, moving in a positive direction, but also helpless to do so. In these moments of rebuilding, Rachel can be a great model. She teaches us to do what we can to have purpose, but modify to be kind to our bodies. She got creative with her career to allow herself to work from home, which led her to discover a passion for writing. She reserves her emotional energy for the loved ones who continue to build her up—her children, her husband who grew with Rachel during her toughest times and her friends who remained constant sources of support. Most importantly, she has learned to value herself as she is, not how she could be. She found pride in her ability to remain connected to her children through her illness, and in the insight she provides to others through her writing. While that “questionable ex” will occasionally make her fearful, she remembers not to let it steal her freedom, or her right to exist.

**** Editor's note:  After this article was published we received requests from readers asking for more specific information about Rachel's treatment and remission.  Below is Rachel's response to readers.  Thanks so much Rachel for sharing with all of us.

A note from Rachel: My neuro-immunologist had read the scholarly articles of Doctor Vernino, and seen this presentation ( https://vimeo.com/32792885 ). He also spoke with doctors visiting NZ from Europe who gave their opinions on my case. Given that 50% of AAG patients are seronegative, he thought it was reasonable to try some immune suppression and see if there was any change in my symptoms, with a view to further, more serious immune modulation. 

A plan of Methylprednisolone infusions across 6 months was made, and potentially, IVIG or Rituximab infusions. The IVIG and Rituximab weren’t needed, as I went into remission on the steroids alone. I experienced dramatic improvement in all symptoms; my pacemaker episodes dropped to zero(!) I no longer endured urinary retention and all that it entails, I had energy again, the ability to move around easily, no dizziness, increased gastric mobility, and best of all, I was able to wean off all the medications I had been taking.  All of the symptoms that had plagued me were improving. Throughout the six months of infusions I had a roller coaster kind of response to the steroids, with each month less time relapsing into the symptoms.  This strong improvement was a surprise to us all. It is of course possible that I was already entering remission when the infusions began.  Sometimes patients with AAG spontaneously enter remission. But I believe it was the infusions because of the timing. Although I don’t understand how steroids alone could have achieved this, I’m sure they did and I am delighted!  

Please be aware that this is sadly not the silver bullet for everyone. It may not be a suitable treatment for all Dysautonomia sufferers. High dose pulse steroids can cause serious issues in many patients especially those with co-morbidities. Please seek the consultation of your doctors as each Dysautonomia patient has a different presentation.  I am always cautious about sharing my story as I have no medical explanation to support how it worked. A satisfactory explanation even escapes my very clever doctor!  He assures me that further research will some day shed light on the impact of inflammation at a cellular level on the autonomic ganglia. For now, I am content with the fact that my ganglia were not dead, but somehow impaired. Every single day I am grateful that I get to experience life away from Dysautonomia and enjoy physical freedom again.  I wish you all, the answers you need, I hope you find treatment that works for you.   

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I know it is a long time since the article, but any chance of sharing who the GP and neuro-immunologist were? I would love to try for a referral

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