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.