As a youth I was very active, never stopping between choir, organ lessons, a multitude of dance classes (some I even taught), being a Sunday school helper (then teacher), youth group at church, Young Life, marching band, flute lessons, co-captain of the Drill Team and much more. I didn’t have health problems back then.
I got pregnant and gave birth to my first son at the age of 18, after marrying the man of my dreams. Around this time I started noticing trouble with my left hip. It would "catch", and I would have to maneuver it back in to place.
When my son was 18 mos. old. I was diagnosed with MVP with regurgitation and murmur. I started seeing a Cardiologist and was started on inderal. Over the next 8 years the symptoms got much worse, and the dosage of the inderal went up.
In 1994 I gave birth to son number 2, with some complications to pregnancy. I had pre-term labor at 24 weeks. It was stopped with fluids. The same thing happened at 34 weeks. At 39 weeks I had to be rushed to the hospital for pregnancy induced hypertension (158/106). I delivered a healthy son.
Over the next few years I had shortness of breath, chest Pain, fatigue, irritable bowel, excessive urination, etc. The hip problems had worsened.
In 1997 I became pregnant with son number 3. It seemed like a normal, non-complicated pregnancy until 23 weeks gestation, when I started having contractions. Initially I went on Brethine pills to try to control the premature contractions. They didn't help much, and by 27 weeks I was placed on complete bed-rest with a terbutaline pump and uterine monitor. At 35 weeks they had to discontinue my pump altogether due to severe cellulitis in my left thigh. I went off the pump and delivered my 3rd son five hours later.
Four months after this birth I started noticing that each time I would pick my son up out of his crib, car seat, bouncy seat, lean over to bathe him or pick him up off the floor, I would have near syncope or syncopal episodes. One time, I barely escaped collapsing with him in my arms. I had just enough time to pass him off to my husband before I completely passed out, injuring my wrist. My husband finally convinced me to contact my Cardiologist.
I wore a holter monitor for 24 hrs., which showed nothing. Then I wore a month long event monitor. This showed periods of time where my heart rate would be fine at 70-80, then all of a sudden shoot up to the 170-180's, then drop to the low 30's.
I was sent to an EP who did a tilt table test, and diagnosed me with neurocardiogenic syncope (NCS) in June of 1998. I was taken off of the inderal and started on 10mg of corgard.
Over the next year I seemed to be better. I went on the Depo-Provera birth control shot and got pregnant on the shot. I was devastated due to all the complications with my last pregnancy. I cried for three weeks. My husband assured me that everything would work out, and that it was God's plan.
I started having contractions 16 weeks into the pregnancy. I started dilating around the 25th week. I was placed on bed-rest at around 25 weeks, with the T-pump and monitoring. My contractions were out of control, and I had a severe reaction to the increased dose of the terbutaline. I had blurred vision, a severe headache, both arms went completely numb and I had chest pain and shortness of breath. I was rushed to the hospital by my husband, and immediately taken off the T-pump. An IV was started. Over the course of the next 48 hours, 7 liters of fluids were run, I was given several shots of a muscle relaxer and I was given two shots of Celestone, which is a steroid given to mature a premature babies lungs.
Finally, I was released to go home. At 35+5 weeks gestation I woke up with a severe headache, blurred vision and was extremely "puffy" and swollen again. I knew immediately what this meant. We headed to the Fire Department (where I worked as a paramedic) to check my blood pressure. It was 148/99, with a follow up of 146/102. I was sent to labor and delivery.
Things got worse after my daughter’s birth. I had to increase the corgard. When she was around 5 months old I had a syncopal episode while carrying her. Thank God she was in a snow suit. I fell on the cement full force. I felt it coming on, but couldn't get to the ground in time. I just put my hand under her head as I went out. My hands were scratched and bruised.
Around April of 2001 I made the decision to go back to work part time. Then my car was hit in an accident. I ended up with major neck, shoulder, ankle and knee problems. The shoulder was the worse.
I started physical therapy. While dealing with all of this, the symptoms worsened again. Once again, I was off to see the Cardiologist. He started me on florinef and paxil.
During this time, I was beginning to have worsened shortness of breath. I was diagnosed with severe allergies and asthma, and I was started on more medication.
My symptoms of NCS got much worse. I was passing out 3-4 times a week, with many more presyncopal episodes. Working 12 hour shifts part time got much worse, and so did the 45 minute drive to work. The brain fog and tunnel vision started 5 minutes after I arrived at work, getting worse throughout the day. In my position, I couldn’t afford to have "brain fog". I had to be ready to respond to high risk deliveries. This could be anything from a micro-premie (23 weeks gestation) to a term baby in major distress. I was in charge of their breathing, or lack thereof. I had to put the breathing tube in, run the Ventilator, give meds. etc.... No room for any errors.
I was at work and had a really bad attack and ended up in the Emergency Deptartment. I later had another episode where I passed out and fell down my stairs. I saw my EP again. He thought proamatine would help.
My heart rate went down into the mid to high 30's after the first dose of proamatine. It stayed at 37-50 beats per minute for 4-5 days. I was not able to move off of my couch, except to go to the bathroom. I had to crawl at some points to do that.
My 13 year old son had to do more that week than a young teenager should ever have to do for their mother and siblings. My husband is a fireman, working 24 hours on, and 48 hours off, and was getting mandated for 12 hours overtime after every shift. My son cooked, dressed the little ones, cleaned, mowed..... you name it. I am not sure what I would have done without him.
I was told to stop taking the proamatine. My HR increased to the mid 50's, and my EP had me start on the proamatine once again. My HR again went to the 30's and 40's. How scary, especially since my pharmacist had informed me that the two worse side effects of proamatine were reflex bradycardia and sudden death.
My doctor went back and forth over the next month with the proamatine, lowered the corgard, and increased the florinef. I took myself off the paxil, which I had been on for about a year and 1/2 by then. I had not felt any better on it, actually much more fatigued.
Sometime in all this I was told I was "hypermobile", and that I had Femoral Patellar Syndrome.
I went to the National Dysautonomia Research Foundation 2002 Patient Conference. I talked to a doctor (Dr. Grubb) at the conference who said it didn't sound like the proamatine was working, and that I should go off of it. I also met a lady who told me about Ehlers-Danlos Syndrome. She has it, and she saw some similarities in me. Little did I know she was right. I was later diagnosed with it.
My heart rate slowly returned to the 60's-80's after stopping the proamatine. I still had periods where it would go as high as the 130's, then as low as the 30's.
With many episodes of passing out still occurring, I put my resignation in at the Fire Department where I had worked as a FF/EMT, and then paramedic, since 1990. This was the hardest thing I have ever had to do. I loved to help people and have a God given gift to do so. But, I did this for my safety and the safety of patients and co-workers foremost. I keep my certifications current, and hopefully will someday to be able to return to this.
I saw my EP again, and told him I had discontinued the paxil and proamatine. He said there was no more he felt he could do for me, and he wanted me to see Dr. Grubb for an evaluation and treatment plan.
Dr. Grubb diagnosed me with Ehlers-Danlos type III syndrome within the first 10 minutes of the visit. He went over so much during the appointment that I didn't know when my head would quit spinning. Now we have answers, but with more questions.
Dr. Grubb prescribed adderal, is weaning me off corgard, and added a baby aspirin a day. With EDS and MVP there is an increased risk of stroke and TIA. I also was prescribed support hose for my 12 hour shifts at the hospital. I am currently undergoing these med changes. So here we are.
I just pray each day that my children or grandchildren never have to go through this. Or at least if they do, by us sharing our stories and findings, that they will have an easier time of it. I remain as active as I can at church, work and with my family. Many days it is so hard. I have learned to slow down some and not push myself, because then I am just spent for that many more days. I feel very fortunate to have my 4 wonderful and loving children. They help me through everyday. I am also thankful for my wonderful and very supportive husband. It took him awhile to understand, but he has been by me every step of the way, and through all the falls (literally). I love all of my family and wonderful friends and co-workers.