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Coming or Going


Jaclyn

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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