Suzanne Stewart's Story
I’d never had fainting problems as a child, but during my first pregnancy (at 8 months pregnant) I stood up and felt like I was going to pass out. I didn't know what was wrong and just put it down to late pregnancy and stress.
As time went on, I started to enter some 5K race walks. I used to love doing them but sometimes towards the end I’d again feel like I was going to pass out. Finally, my husband and I were just watching a movie one evening when all at once I just slumped over unconscious. He took me to the ER, where they asked if I was stressed. I wasn’t, and when they made it sound like it was all in my head I just wanted to go home.
I continued to pass out occasionally. On my daughter’s 9th birthday, with my husband in hospital after surgery, I lost my keys to the van. I panicked and looked everywhere, but passed out on the floor. An ambulance was called and took me to the hospital, where they said they were concerned by things on my EKG (ECG) such as a "Long QT". They wanted me to stay the night, but I decided to leave as my husband and daughter were my priorities.
While my husband was still in the hospital, I was exhausted from keeping everything going and one Saturday night I passed out while doing the laundry. As I fell, I hit my head on a metal pole between our washer and dryer. It felt like ice was going down the left side of my face and then my face drooped downward. Because of my family commitments I waited until Monday to call my own Neurologist. He got me a CT scan of my head which showed some swelling and he put me on steroids to reduce it. My face drooped for months and the EMG test showed facial nerve damage. So if you ever fall during a syncopal episode, tell someone!
I had started to see a cardiologist in 1991 for some of these problems, but I truly believe that at first he thought it was in my head and he wasn't quite sure what to do with me. He sent me to EPS Doctors who did two tilt-table tests but all went well and they changed their possible diagnosis of vasovagal syncope to neurocardiogenic syncope.
Then my husband and I were in a car accident. When the other car hit us, I was out cold for about 20-30 minutes. I sustained multiple injuries and an ENG test showed that my brain had been injured in the area of the cerebellum, giving me a "central dysfunction".
After the accident, I was passing out quite often. Finally, one day during my physical therapy appointment as I was strapped onto the bicycle and left to pedal for ten minutes or so on my own, I started to feel an "episode" coming on. I called for help and no one came. I literally fell off of the bicycle with my feet still strapped into the pedals. They took my BP and HR and my BP was 70/40 and my HR was in the 20's! I had to go directly to the hospital and it was decided that I needed to be transported by a special cardiac equipped ambulance to a bigger hospital where they do pacemaker surgery.
I was observed overnight. The doctor came in the next morning and told me that I had some arrhythmias and irregularities and that I needed a dual chamber pacemaker. I had to have it fitted that day – my 40th birthday! Unfortunately, I had some electric "shocks" afterwards: they couldn’t tell me what they were, but I discovered online that because I am thin, they had to cut into my pectoral muscle and make a pocket for the device. The cut nerves were the reason for the shocks, which took a good year to settle down. I'm just wondering why the EPS doctors and cardiologists didn’t know this and made me feel once again like it was all in my head.
Well, the pacemaker solved 99% of my passing out problems and I am so lucky to have it. I was even luckier to find a Neuro-Cardiologist, Dr. Blair Grubb, MD at the Medical College of Ohio. He explained how the head injury had made my minor problem a lot worse. He said I had dysautonamia and that my brain wasn't telling my heart what to do. He told me the pacemaker was set to bring my BP up quickly if it sinks, in order to stop me from passing out, and it is working still to this day!
Then, in 2005, I had a mild heart attack. I wore a 24-hour monitor for a month which showed that I had atrial fibrillation and atrial flutter. They told me I would have to be on Coumadin, a blood thinner, for the rest of my life! Things got even worse in September 2006, when I had a CVA or stroke. It was minor but I still have speech problems. The doctors think that a small clot from the A-fib, came out and went into my brain, but must have passed through because it didn’t cause a lot of damage. So now my dosage of Coumadin is pretty high to keep me from having a stroke again.
I haven't passed out since the pacemaker was installed. I have had a few small "episodes" where I thought I might pass out. I got all clammy and nauseated, my heart went very high and I had to lie down. The EPS doctors offered me the medicine called "Midodrine". At first I didn’t understand why they would give me a medicine that constricts the blood vessels when I'm on the nitro-glycerin patch which opens the blood vessels and arteries up so I don't have chest pain. So I never got my prescription filled because nobody would take the time to explain or talk to me about the medicine.
After reading so many stories in the STARS magazine about Midodrine, I guess I can see why they prescribed it for me. So I’m going to start taking it because if it works for me too, then I will be feeling even better!
I hope my story helps people to know that they need to listen to their bodies. Don't ever give up and don’t let anyone tell you that "it's in your head". You know your body better than anyone else does. Just persevere until they listen to you or until you find someone else who takes you seriously.
I want to thank Trudie and the STARS organization for opening my eyes to the many faces of syncope, the reasons and the cures. I appreciate what she does for us and for all of the people that will need her and the organization in the future. I commend you and I thank you from the bottom of my heart.
Suzanne Stewart USA