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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Coming or Going


By Barb
August 2009

My name is Barb; I am 56 years old now but started dealing with this in 2006 after my gallbladder was taken out.

After having my gallbladder out, the unknown began.  At the time, I had no idea what was going on, other than being taken to the hospital several times.  After many doctor visits to see what was happening to me, I said something to my internist doctor, and he said I needed to see a cardiac doctor.  I was set up for a tilt-table test. The doctor told me that I have neurocardiogenic syncope, vasovagal, etc. 

I am on a beta-blocker now and must tell all my doctors before anything is done to me.  I have been on a beta-blocker since 2006 and also started using salt tablets. If I start feeling funny, I put half of a salt tablet inside the cheek of my mouth (which helps).

It is so hard to tell people what I went through with this disorder. I would go into an epileptic-type seizure, draw my arms to my chest, and shake all over. I couldn't hold my legs still, and I talked like Katharine Hepburn. (I have not passed out but have been so close).  I would lose control of my bowels and then be so tired after all the things that had happened that I would want to sleep.  After a seizure, I would go home and sleep between 4-10 hours depending on how bad the seizure was.

I can no longer work due to all of my medical problems. I do play the mountain dulcimer and bowed psaltery, but I can't sit long due to my seizures; the prolonged sitting can activate a seizure. I can have restroom problems, and if I don't make it to the restroom, I can have, and have had, a seizure. If I become sick, such as with a sinus infection, it can bring on a seizure.  I tried to perform at church for all 3 services, and the last service I had to sit out because of having a mild seizure.  Along with all of this, I have bursitis in both hips (have trouble walking, sitting, standing) and arthritis in the lower back (which does not help walking, sitting, standing etc.).


Sometimes I don't think my husband understands what is going on, but he has seen one of the worst seizures.  He says that there is always something wrong with me. I had to tell him that I did not ask for this or any of the other medical issues.  He believed me after the bad seizure occurred.

We were getting ready for bed; I stood up, and my hands felt numb. I felt pins in my neck, and then it went up both arms. I thought I would lie down and put my legs up to get the blood back to my brain.  After a very short time, I could no longer hold still, and then the bathroom issue came along, so he had to help me there.  During that time, I just told him to call for an ambulance. (It all ended with a trip to the hospital). They told me that all my capillaries had opened up. 

I think what scares me so much is not knowing what kind of seizure will happen, so that probably brings up the nerve thing (maybe that’s thinking to much).  I think life is a journey, but I'd like to get off this ride for sure.  I know that I must accept it and go on, so that is what I try to do and not let it run my life; however, it still does.

PS:  There is probably more to add but my brain has stopped working for now.

Thank you for your support.

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