Sometimes life throws you a curve ball and you have no choice but to catch it, hit it, or dodge it. I had been seizure free since April of 2014 and then, at the end July, I had one of my spells. I have non-epileptic seizures. I never fully lose consciousness and I don't jerk or twitch, I just sort of shut down for a minute. I lose control of my body. I can't move or respond to what's going on around me. It's almost like a reset button has been pressed.
I happened to have a neurology appointment a few weeks after the initial event. My neurologist and I talked about the possible return of these seizures. She told me that sometimes people just have breakthrough episodes. No one can predict them nor can we control them. It's unfortunate but at least we can limit their recurrence.
I'm on a relatively high dose of Topamax already, an anti-seizure medication. I also take Lyrica for neuropathic pain. It has an anti-seizure medication in it as well, so no need to change any of my medication. There are triggers, however, for seizures. Stress, lack of sleep and excess alcohol consumption can all contribute to breakthrough episodes.
Unfortunately, there has been no lack of stress around here. From home repairs, car repairs, back to school expenses and now the victims of bank fraud, life has definitely kept us on our toes this year. Lack of sleep? Well, I do my level best to get a good night's sleep every night because lack of sleep contributes to a higher risk of migraines and so does an excess of alcohol. But I'm human. So I don't always sleep well and I don't always stick to "just one" drink.
The good news is, I haven't had another breakthrough seizure. The bad news is, I'm on three to six months no driving. Three months because I never lost consciousness, up to six months depending on how I feel. If I feel I am not putting myself or others at risk I can start driving again in November. Just in time for holiday travel.
Tuesday, August 18, 2015
Tuesday, August 4, 2015
PET scan of the heart
The last few conversations I've had with the cardiologist have left me feeling like I'm either not being taken seriously or that I'm just some hopeless case but everyone is just too polite (or too greedy) to let me know. In fact, at the appointment before last the conclusion was that perhaps heartburn was causing the sensation of uncomfortable chest pain. I wish you could see my face as I explain this to you. I do have bouts of heartburn, but I have not had it for the last five years straight. I went by his recommendation anyway, and took an antacid everyday for a month before returning to tell him just exactly how stupid that plan was.
At least that last appointment was blessedly more productive. He asked me a question that I think is one every patient with chronic pain needs to ask themselves. Not because a doctor is ready to give up on you, but because they need to know how willing you are to work with them for answers. He asked me, "How much does this pain impact your life? Is it just a minor annoyance that you can live with? Or is it something more serious that we really need to explore?" He needed to know because he had done everything he could to fix my chest pain. I had already had a heart catheter and a coiling procedure. I'd had three stress tests and everything was healthy and normal. I answered that I needed to fix this. It wakes me up at night. It keeps me from participating in life. It was decided that I would be scheduled for a PET scan of the heart. It would give him a definitive result of whether or not there were anything left to correct or any blockages in my heart. If they were, we would know where to proceed. If not, he would have an idea of where to look next.
A PET scan is a Positron Emission Tomography scan that uses a radioactive tracer to look for disease, injury or poor blood flow in the affected area. Pictures are taken using a combination of CT and PET scans.
To do the test, you have to lie on your back with a bunch of wires connected to your chest to monitor your heart rate (EKG) and an IV stuck in your arm to pump you full of radioactive tracer (superpowers not included). First, images are taken of your resting heart rate. Then they give you a concoction of an aerobic workout in a bottle to get your heart rate up and your blood vessels open, all while you're still lying flat on your back. More pictures are taken. Then you go radioactive. More pictures. Then you are given the antidote to the workout concoction. More pictures. And, voila! You're done.
Unless you're me. And you have really low blood pressure.
In which case, when your pressure dips down in the low 80's and your blood doesn't flow like they want it to, you have to spend a great deal of time pedaling your feet and squeezing balls in your hands. But they got what they needed and that's all that matters.
Even better is that the cardiologist running the show gave me the results a few minutes later.
Good news is that my heart is 100% normal and healthy. Woo hoo! He also said that I'm not crazy. Pain is real. And that often, by the time patients get to him, it's the doctors that are crazy. His thoughts were that the pain was one of four things:
1) Nerves got cut during my open heart surgery and were damaged, causing pain.
2) Nerves were cut and are now dead causing phantom pain much like an amputated limb will still feel pain.
3) Something inside my chest wall is inflamed or I formed an allergic reaction to something within my chest wall after my surgery, causing pain.
4) I have a very minor leaky valve (which I knew about). It is very common, especially in women. It is minor enough that it should not be causing me any pain, but it is always possible.
These were the first real answers I have gotten in the last five years. Well, since we tried to correct the situation with the coiling procedure. This doctor said he would stay with me until we corrected the situation, but also said no more surgeries! He thinks we can correct the pain with either medication or injections. Our first step is to try a beta blocker.
I'm to try the new medication for at least one month. If it doesn't work he is going to refer me to a pain specialist for nerve blockers. Now the hard part is getting used to the side effects. And keeping my blood pressure up...
At least that last appointment was blessedly more productive. He asked me a question that I think is one every patient with chronic pain needs to ask themselves. Not because a doctor is ready to give up on you, but because they need to know how willing you are to work with them for answers. He asked me, "How much does this pain impact your life? Is it just a minor annoyance that you can live with? Or is it something more serious that we really need to explore?" He needed to know because he had done everything he could to fix my chest pain. I had already had a heart catheter and a coiling procedure. I'd had three stress tests and everything was healthy and normal. I answered that I needed to fix this. It wakes me up at night. It keeps me from participating in life. It was decided that I would be scheduled for a PET scan of the heart. It would give him a definitive result of whether or not there were anything left to correct or any blockages in my heart. If they were, we would know where to proceed. If not, he would have an idea of where to look next.
A PET scan is a Positron Emission Tomography scan that uses a radioactive tracer to look for disease, injury or poor blood flow in the affected area. Pictures are taken using a combination of CT and PET scans.
To do the test, you have to lie on your back with a bunch of wires connected to your chest to monitor your heart rate (EKG) and an IV stuck in your arm to pump you full of radioactive tracer (superpowers not included). First, images are taken of your resting heart rate. Then they give you a concoction of an aerobic workout in a bottle to get your heart rate up and your blood vessels open, all while you're still lying flat on your back. More pictures are taken. Then you go radioactive. More pictures. Then you are given the antidote to the workout concoction. More pictures. And, voila! You're done.
Unless you're me. And you have really low blood pressure.
In which case, when your pressure dips down in the low 80's and your blood doesn't flow like they want it to, you have to spend a great deal of time pedaling your feet and squeezing balls in your hands. But they got what they needed and that's all that matters.
Even better is that the cardiologist running the show gave me the results a few minutes later.
Good news is that my heart is 100% normal and healthy. Woo hoo! He also said that I'm not crazy. Pain is real. And that often, by the time patients get to him, it's the doctors that are crazy. His thoughts were that the pain was one of four things:
1) Nerves got cut during my open heart surgery and were damaged, causing pain.
2) Nerves were cut and are now dead causing phantom pain much like an amputated limb will still feel pain.
3) Something inside my chest wall is inflamed or I formed an allergic reaction to something within my chest wall after my surgery, causing pain.
4) I have a very minor leaky valve (which I knew about). It is very common, especially in women. It is minor enough that it should not be causing me any pain, but it is always possible.
These were the first real answers I have gotten in the last five years. Well, since we tried to correct the situation with the coiling procedure. This doctor said he would stay with me until we corrected the situation, but also said no more surgeries! He thinks we can correct the pain with either medication or injections. Our first step is to try a beta blocker.
I'm to try the new medication for at least one month. If it doesn't work he is going to refer me to a pain specialist for nerve blockers. Now the hard part is getting used to the side effects. And keeping my blood pressure up...
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