STARS Patient Information

Pam's Story

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Hi, my name is Pam and I was misdiagnosed with epilepsy.

Right or wrong a diagnosis defines a person. As that person or patient – I have identified myself as my diagnosis for 20 years. I struggled with “black outs” or “loss of consciousness” from the time I was a little girl.

I clearly remember in 3rd grade getting ready to perform in the class play “Johnny Appleseed” screwing around with a couple of other kids and cutting myself with a pair of scissors – the palm of my hand is still scarred. I ran to the washroom to put my hand under cold water – the next thing I knew I was waking up on the floor, begging my friends to not tell the teacher! If she finds out, she won’t let me be in the play. They told – I went home.

Mom took me to the doctor - he declared it “hysterical female syndrome”. Don’t be confused, I am only 47 and this was in 1971 - it was not 1692 during the Salem witch trials….. This was modern day small town America doctoring.

From seven years old I believed that I was a hysterical female (I wasn’t sure what that meant, but I knew that I’d best get it under control). Every time I had blood drawn, got my ears pierced, went to the dentist even something as simple as a pedicure –I fainted. This hysterical female syndrome is bad news!

I once bit a dentist during a root canal filling, not knowingly – I was unconscious! At 27 I was working as a designer when I collapsed face down on the floor and was hauled off to the hospital via ambulance. They did an EEG. I was no longer a hysterical female – I was epileptic.

With my newly minted diagnosis came an experiment in terror. How will we control these ‘seizures’? At 27 I was taking 100mg of dilantin every eight hours. I am a machine when it comes to routine and I followed orders explicitly. It took a long time to feel “normal” on dilantin but over time I functioned fairly well. I was still pounding away at my career and finding success. I stayed on dilantin until I was 34, when I quit smoking, got engaged and was promoted. It was a big year!

My body crapped out on me for it. I landed in the hospital and learned that my thyroid had quit functioning and that I had “bottomed out” on the dilantin and would need to find a new anti-seizure medication. The fun was just beginning.

I found a very reputable neurologist, he was the first of many. He had “great success” prescribing tegretol to other patients with epilepsy – The real pain point with trying new medications is the time it takes to see the effects. You don’t feel better or worse for weeks. If you are going to have a bad reaction it generally comes on so slowly and your thinking becomes so impaired that you cannot even save yourself.

It took four weeks for the tegretol to really show its impact. I was sluggish for days, moving slowly but still going to work every day. One afternoon I looked at a co-worker and simply said, “something is wrong.” She looked at me and I could see the horror on her face. My head had swelled that day, distorted beyond recognition. Over the next few hours I lost my hearing, my ability to speak and walk. I was taken to the doctor immediately and his response? “hmmm, that’s not working.” I came off the tegretol and sought out a new neurologist.

Topamax was a fairly new drug that was being prescribed for seizures, with the side-effect of weight loss. I had gained weight from the tegretol and the trouble with my thyroid, so I was very excited about the prospect of “solving all my problems!” As I began taking topamax I felt like I was invincible! I needed no sleep, I needed no food. I felt like a million bucks for the first four weeks. That is about the time the levels built up in my system to where they should be and the real trouble began.

My memory was gone. I couldn’t connect the thoughts in my head to my mouth – I literally couldn’t speak and didn’t. I was thinner than I had ever been. I went to see the doctor. His response, “you LOOK great! What’s the problem?” He seriously did not want to take me off of the Topamax – but eventually conceded and I went on to the next one.

Neurontin, which made me a non-functional catatonic. And the next one, depakote, which made my saliva taste like blood and caused paranoia to the point I thought my husband was trying to kill me. Nothing was controlling the seizures. And I was not functioning very well on any of the medications.

Meanwhile, I was married in the midst of all this and was now a step-mom to three fabulous kids and somehow managed to keep my job and kept getting promoted. From the age 34 to 42 - I battled through terrible drug trials. Finally, in 2006 I stopped the pharmaceutical cocktails and continued to live a very cautious life with a strict schedule of balanced sleep time, controlled eating habits and basically functioned within a tireless routine. It was working. My career was flying high – life was good! But then in 2008 the world changed.

It’s 2008, I’m enjoying my work, just built my dream home and all was right with the world - until the bubble burst – literally. The housing bubble and the economic collapse was a life altering moment in time for many. I am one of them.

My company went through a massive reorganisation and offered long term employees a “retirement” package. I was scared, but very excited by the opportunity to start the business I always dreamed of. Real estate development and interior design. My then husband and I agreed to a plan. Unfortunately stress and pressure impacts everyone differently and manifests itself in unexpected ways – for me, it meant the end of my marriage.

Just as things seemed impossibly overwhelming I received a call from a recruiter for a major retailer in Arkansas. They had researched my career and would like me to come to Arkansas and do for them what I’d done for my previous employer. I accepted the offer.

Northwest Arkansas – you have no idea the pain it caused me to tell my friends and family that I was moving to Arkansas – to a dry county! November 2009 I moved to Northwest Arkansas, me and my pups – Ainslie and Addison – we three girls became the “reluctant residents”. I maintained my lifeline to Chicago and travelled home pretty frequently – as I did in early February of this year.

After a great trip I headed back to the office for a full day of work. It was a completely uneventful day, thank goodness! That evening, feeling fine, I headed home to have dinner with a friend. About 9pm I started to feel very dizzy, like nothing I had ever experienced before. This was, as far as I could tell, vertigo. I lay down and could not get the spinning under control. I rose to go to the bathroom only to fall head first into the wall. I crawled to the bathroom and began to dry heave. I eventually made my way back to bed and sent my friend home so that I could rest and hopefully “shake this thing!”

After a few more minutes of this spinning and not feeling right, I texted my Aunt in Tulsa asking her what she thought these symptoms were. She responded “go to the hospital.” I text my cousin Toni, who was nearby. She contacted her boyfriend’s father, a doctor, who also said “go to the hospital”. 

I was sure that I just needed sleep, but with Toni’s prompting, I finally allowed her to drive me to the emergency room. Toni dropped me at the door and went to park. I walked directly to the front desk starting to again feel dizzy. I quickly explained that I wasn’t drunk and, before I knew it, they had me in with a nurse getting my pulse and blood pressure checked etc. Very quickly, they got me into a gown and on a bed in the ER. They were hooking up heart monitors. I forget that I am 47, which is a prime age to be concerned with heart issues. I told them that I was epileptic and on thyroid medicine as well as allergy medications.

In ER, they set me up with an IV. That is when I flat-lined the first time. They began CPR, pulled out the shock paddles and just as they were going to shock me, my heart started, after a 27 second silence. I came to and seemingly had no clue where I was or why. I was moved into Cardiac ICU for the night. Each time I was poked or prodded, I had the same flat-line experience. (which interestingly felt just like a seizure) I became exhausted. In total, there were seven incidents that night. 

Thursday morning the cardiologist and cardiac surgeon came to see me. They felt strongly that epilepsy was a misdiagnosis. I argued with them. . . how? I have been treated for it for 20 years! And they said, “have you had it under control?” I hadn’t. The doctor explained that there are quite a few cases of epilepsy that have now been determined as misdiagnosed. Instead the condition is related to vasovagal syncope and an electrical miss-fire that causes the heart to stop, the recommended solution? A pacemaker.

That’s when my heart really stopped! What?!? A pacemaker? Is this the only option? The answer was simply, no. “You don’t have to get the pacemaker now, but I guarantee that you will be here in two weeks one way or another.” I looked the doctor in the eye and asked what he meant. He said, “You will either be back here in two weeks begging for the pacemaker or you will be here in a box. You are lucky to have made it here last night.” I didn’t know how to process that information.

My aunt and uncle were on route to the hospital from Tulsa, Oklahoma. I knew they would arrive within the hour. I told the Doc that I really wanted to talk with them about it before I moved forward. When Aunt Lynn and Uncle John arrived I explained what was going on and that the operating room was being held for my decision. Aunt Lynn looked at me and said “what are you waiting for? Get to the surgery!”

I let the doctor know, and within 30 minutes I was in the operating room. Surgery was Thursday morning. By Friday afternoon, I was released to go home with my new equipment installed. The doctor was very supportive and encouraging. He told me that he was amazed by what I had accomplished and couldn’t wait to see what I could do now that I could live a normal life. I didn’t understand the truth in that statement until now.

I had lived a very cautious life, always worrying if I would fall unconscious. I was just very, very careful. And now that everything is working like it should, I don’t have to be so cautious. I used to wake each night around 3am, sometimes gasping for air. I couldn’t understand why and just assumed it was bad dreams. When I got home with my new pacemaker in place, I would feel it kick in about 3:00 am each morning. 

Apparently, in my sleep, my heart rate would drop so low that it triggered the pacemaker. I always slept very lightly, and then I would rouse myself awake at 3am so that my heart-rate wouldn’t drop or stop. Now, I sleep great! I’ve lost 15 pounds with no effort because I feel good and my body is functioning like it should. 

No one shops for cardiologists – you have a critical situation and you get who you get. Everything happens for a reason. Following my move to Arkansas near Mercy Hospital, I had the very good fortune to have found one of the best. There is a doctor there who is pushing the envelope and thinking in new ways, changing people’s lives, using all of his resources and knowledge to make a difference. 

The doctor talked about an amazing pacemaker that he intended to use. I’m sure I rolled my eyes at the time — thinking “what are you talking about??” Thank goodness it was up to someone much smarter and more patient than I am to determine what I needed. The doctor was clear that if they didn’t have what I needed, he was not going to compromise! 

This is a doctor who is making a difference! He didn’t give me my life back – I never had my life – he gave me the opportunity at 47 to start my life – no fear and no boundaries.

Pam Orlando

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