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...
Tuesday, June 9, 2015
No Pain, No Gain
It has been a couple weeks since the cardiologist told me to start pushing myself when it comes to overcoming my chronic chest pain. I'm finding that it's not that difficult to get my heart rate up, but all this physical activity is taking its toll. Not only do I have the chest pain to contend with, I have neuropathic pain from my stroke to battle against as well. The right side of my body is in a constant state of "Ouch!" and that ain't good. Especially the more active I get.
My morning routine consists of a short, targeted strength training workout (Denise Austin's Get Fit Fast) and walking the dog. If I choose not to do the strength training I do yoga and got my stretch on (JJ Gormley's Yoga Complete for Every Body). And I do this nearly every single day. So pushing myself means what, exactly?
I have a fitness tracker to help keep me motivated. I do my best to walk to the dog farther now; at least one mile every day. Either one long walk in the morning or two short walks throughout the day. If I am lacking in steps for the day I will hop on our stationary bike to try to catch up. I put on some music while I'm cooking dinner and dance in the kitchen while slicing and dicing. Other than that, I'm not really sure what else to do. I'm a broke writer working from home, for Pete's sake.
I raise my heart rate too much, my chest pain gets too severe to continue normal activity. And when I'm very active for more than a couple of days in a row, the right side pain is so severe I have to spend several days laid out to recuperate from that. So then the fitness tracker is useless, all the work I did previously is useless and I just have to start all over again in a few days. My whole system has become moot.
Total Catch 22. The more I work the more pain I'm in the more I have to rest the more I have to work the more pain I'm in the more I have to rest...
I'm kind of honestly at a loss as to what to do. I think the next step is just to check in with neurology and see if there is another increase I can do with the Lyrica to help with the pain management. Other than that...?
My morning routine consists of a short, targeted strength training workout (Denise Austin's Get Fit Fast) and walking the dog. If I choose not to do the strength training I do yoga and got my stretch on (JJ Gormley's Yoga Complete for Every Body). And I do this nearly every single day. So pushing myself means what, exactly?
I have a fitness tracker to help keep me motivated. I do my best to walk to the dog farther now; at least one mile every day. Either one long walk in the morning or two short walks throughout the day. If I am lacking in steps for the day I will hop on our stationary bike to try to catch up. I put on some music while I'm cooking dinner and dance in the kitchen while slicing and dicing. Other than that, I'm not really sure what else to do. I'm a broke writer working from home, for Pete's sake.
I raise my heart rate too much, my chest pain gets too severe to continue normal activity. And when I'm very active for more than a couple of days in a row, the right side pain is so severe I have to spend several days laid out to recuperate from that. So then the fitness tracker is useless, all the work I did previously is useless and I just have to start all over again in a few days. My whole system has become moot.
Total Catch 22. The more I work the more pain I'm in the more I have to rest the more I have to work the more pain I'm in the more I have to rest...
I'm kind of honestly at a loss as to what to do. I think the next step is just to check in with neurology and see if there is another increase I can do with the Lyrica to help with the pain management. Other than that...?
Friday, May 22, 2015
Stress Test, Stress Test, Stress Test
I think by now I've had just about every type of stress test there is; run-of-the-mill-treadmill, nuclear, and cardio-pulmonary. The only one I can think of that I haven't done is chemical. And I'm ok with that. I also hope I never have to see another treadmill as long as I live.
About a week and a half ago I had a nuclear stress done to try to determine to cause of my chest pain. Doing a nuclear stress test is a long game of "hurry up and wait". I went in and was hooked up to all the leads for the heart monitor (EKG) and an IV for my radioactive dye. Then I sat for an hour so they could get x-ray pictures of my heart at its resting heart rate. Then I got to hop on the treadmill. Oh joy! Having already done a regular stress test I knew what to expect. The treadmill starts off slow and gets more and more intense. I was told the goal was get my heart rate up to at least 150+ beats per minute. I only made it to about 140 beats before we had to stop because of pain and shortness of breath. Then I got more radiation and some medication to open my blood vessels. Then it was hurry up and wait again, but this time for about 15 minutes. More pictures were taken of my heart. All in all, this whole process took about four hours.
The results were that my heart is completely healthy and normal. So my cardiologist referred me back to the doctor who did my coiling procedure in September to see what his opinion was. My cardiologist told me that if I stayed with him, the best he could do was treat me with medication and he didn't want to keep throwing more and more pills at me. So off to the specialist I went.
At his office, he suggested we do a cardio-pulmonary stress test to see if there was a correlation between the shortness of breath and the chest pain. This stress test is a little different in that you are hooked up to a breathing apparatus that measures your oxygen intake and carbon dioxide output. It also keeps track of your heart and watches to make sure it isn't being deprived of oxygen while it is doing its job. Good news is, my heart and lungs are healthy and normal. Everything looks great. Although I wouldn't suggest doing this test when you have a sore throat like I did. It's like tiny fire icicles being driven into the back of your throat and you can't swallow because your mouth has a giant plastic tube shoved in it! But I'm ok.
So. What does all this mean now?
It means that I have to push through this setback. The chest pain is not something that is going to hurt me, it is not warning me that something is wrong and I'm certainly not going to die because of it. In fact, it's quite the opposite. I have been told to start pushing myself. I need to get out and start moving; get my heart pumping again. Get it used to the lifestyle I want to live. I can't help but remember five years ago after my first stroke when I was told to stop all activities until they figured things out. And then it took five years to figure things out. In fact, it wasn't until this past September I was finally released to resume normal activity. And now that my chest hurts when I resume normal activity... AAAHH! It's enough to drive a person crazy.
This is going to take some getting used to.
And I didn't even get superpowers from all the radiation I've been exposed to the last five years.
About a week and a half ago I had a nuclear stress done to try to determine to cause of my chest pain. Doing a nuclear stress test is a long game of "hurry up and wait". I went in and was hooked up to all the leads for the heart monitor (EKG) and an IV for my radioactive dye. Then I sat for an hour so they could get x-ray pictures of my heart at its resting heart rate. Then I got to hop on the treadmill. Oh joy! Having already done a regular stress test I knew what to expect. The treadmill starts off slow and gets more and more intense. I was told the goal was get my heart rate up to at least 150+ beats per minute. I only made it to about 140 beats before we had to stop because of pain and shortness of breath. Then I got more radiation and some medication to open my blood vessels. Then it was hurry up and wait again, but this time for about 15 minutes. More pictures were taken of my heart. All in all, this whole process took about four hours.
The results were that my heart is completely healthy and normal. So my cardiologist referred me back to the doctor who did my coiling procedure in September to see what his opinion was. My cardiologist told me that if I stayed with him, the best he could do was treat me with medication and he didn't want to keep throwing more and more pills at me. So off to the specialist I went.
At his office, he suggested we do a cardio-pulmonary stress test to see if there was a correlation between the shortness of breath and the chest pain. This stress test is a little different in that you are hooked up to a breathing apparatus that measures your oxygen intake and carbon dioxide output. It also keeps track of your heart and watches to make sure it isn't being deprived of oxygen while it is doing its job. Good news is, my heart and lungs are healthy and normal. Everything looks great. Although I wouldn't suggest doing this test when you have a sore throat like I did. It's like tiny fire icicles being driven into the back of your throat and you can't swallow because your mouth has a giant plastic tube shoved in it! But I'm ok.
So. What does all this mean now?
It means that I have to push through this setback. The chest pain is not something that is going to hurt me, it is not warning me that something is wrong and I'm certainly not going to die because of it. In fact, it's quite the opposite. I have been told to start pushing myself. I need to get out and start moving; get my heart pumping again. Get it used to the lifestyle I want to live. I can't help but remember five years ago after my first stroke when I was told to stop all activities until they figured things out. And then it took five years to figure things out. In fact, it wasn't until this past September I was finally released to resume normal activity. And now that my chest hurts when I resume normal activity... AAAHH! It's enough to drive a person crazy.
This is going to take some getting used to.
And I didn't even get superpowers from all the radiation I've been exposed to the last five years.
Thursday, April 30, 2015
Return of the Chest Pain
Last summer, I had a heart catheter that determined I had some abnormalities in my heart that could possibility be causing my chest pain. Then I subsequently had the procedure to fix the abnormalities. I had some relief for a short while but the chest pain came back. And now I'm afraid my poor doctor doesn't know what to do with me.
We've already tried different blood pressure medications (to regulate the internal blood pressure in my heart) and now I'm on the last vasodilator that is available to help expand my vessels and create better blood flow. And it still hurts. I can place my hand over the exact place on my chest where it hurts. Sometimes it even radiates up my neck, wraps around my back or down my left arm.
And the crazy thing is, I felt perfectly fine until they went in and "fixed" it.
I keep trying to tell myself it's better than having another stroke. But the worst stroke I had was on the operating table, not the first minor stroke I had that led to the discovery of my heart defect. But then again, is there really such thing as a minor stroke? See why I get so frustrated? I go round and round about this. One moment regretting the decision to have the ASD repair, the next thinking that maybe it was worth it.
Fast forward four and a half years, and I'm still having chest pain (which only started after the heart surgery). I've had numerous tests, one exploratory procedure, my coiling procedure and all for what? To still be in pain. To still be short of breath. To still tired out easily.
My doctor has warned me that he has done just about everything he can do for me. It might be time to move on to see the specialist that did my coiling procedure full time. I really don't want to do that. Not only is the specialist down town (which is a pain in the ass), I love Dr. Morris. We have a great rapport. The nurses at his office are friendly and knowledgeable. I don't want to leave him. His next, but hopefully not final, suggestion is to do a nuclear stress test.
I've done a stress test before, but this time I get to be hooked up to an IV and pumped full of radioactive dye. Too bad I haven't gotten superpowers from all the radiation I've been exposed to. That would definitely be a happy ending to this story. As it stands now, the results determine which doctor I will go see next; the one I have grown to trust and know and love or the one that has seen my groin up close and personal.
We've already tried different blood pressure medications (to regulate the internal blood pressure in my heart) and now I'm on the last vasodilator that is available to help expand my vessels and create better blood flow. And it still hurts. I can place my hand over the exact place on my chest where it hurts. Sometimes it even radiates up my neck, wraps around my back or down my left arm.
And the crazy thing is, I felt perfectly fine until they went in and "fixed" it.
I keep trying to tell myself it's better than having another stroke. But the worst stroke I had was on the operating table, not the first minor stroke I had that led to the discovery of my heart defect. But then again, is there really such thing as a minor stroke? See why I get so frustrated? I go round and round about this. One moment regretting the decision to have the ASD repair, the next thinking that maybe it was worth it.
Fast forward four and a half years, and I'm still having chest pain (which only started after the heart surgery). I've had numerous tests, one exploratory procedure, my coiling procedure and all for what? To still be in pain. To still be short of breath. To still tired out easily.
My doctor has warned me that he has done just about everything he can do for me. It might be time to move on to see the specialist that did my coiling procedure full time. I really don't want to do that. Not only is the specialist down town (which is a pain in the ass), I love Dr. Morris. We have a great rapport. The nurses at his office are friendly and knowledgeable. I don't want to leave him. His next, but hopefully not final, suggestion is to do a nuclear stress test.
I've done a stress test before, but this time I get to be hooked up to an IV and pumped full of radioactive dye. Too bad I haven't gotten superpowers from all the radiation I've been exposed to. That would definitely be a happy ending to this story. As it stands now, the results determine which doctor I will go see next; the one I have grown to trust and know and love or the one that has seen my groin up close and personal.
Tuesday, March 31, 2015
Things are Looking Up
Recovery has been a long and (very) difficult road for us. If there was a roadblock to encounter, I found it. But it looks as though (fingers crossed) things are finally on the upswing. After that last coiling procedure, I have had less pain, I had a successful neurologist appointment last month and I am enrolled in college again to complete my bachelor's degree.
I had a coiling procedure in my heart last September to block the flow of blood to some extra veins in my heart. I do feel a lot better most of the time. I have only needed my nitroglycerin pills twice since then and both times were when I just wore myself out; which isn't hard to do. I definitely have less chest pain but I still get short of breath and tire easily. I have hope, however, that I can continue to build my endurance by simply continuing with my exercise routine and building upon that. I started gardening, which is a whole other story in itself, so that helps keep me active. As if the kids, the dog and the normal foundation of my life weren't enough.
Last month I had a six-month follow up with my neurologist. We made some changes to my medications. We decided to increase my Lyrica and get rid of the Neurontin. The insurance company, however, thought they were smarter than my wonderful doctor and took an extra month to approve the medication increase. So I spent a short while with no pain relieving medication at all while they farted around. But everything is fine now and I do feel slightly better. I have a hard time telling if the extra pain in my right arm and leg is due to my being more active lately (which I am doing on purpose - I am so sick of being static) or if it is genuinely increasing on its own or if I am only growing more tolerant of all the medications. The other plus has been a decrease in my migraines. I had one not too long ago, but it only lasted four days; so that wasn't too terrible. I think my diligence for to sticking to my migraine diet helped that.
Everything seemed to be going so well that my husband, Victor, and I sat down and mapped out a future plan that includes me going back to school to finally finish my Bachelor's Degree. Granted, it won't be in forensic science like I originally thought it would be, but I have to continue on the path that I have ended up on. I have been writing seriously for about 18 months now and it is time to get a formal education in English and Creative Writing. I have a few ideas of what I want to do with my degree when I am done and am very hopeful that I will continue to get better and be able to take advantage of the situation. And it has been so important to me to finally finish my degree.
You're looking at the newest Undergrad at University of Houston Victoria, majoring in Creative Writing. I hesitated to tell anyone because I was so upset when I had to quit school back in 2012 due my memory loss and then quit my job due to my seizures. But now seems that I have a good handle on things. The memory is still a problem, but it has gotten better and I haven't had a seizure in 11 months.
Go me!
Friday, February 6, 2015
National Heart Month
Happy National Heart Month!
Red sweeps the nation this month to raise awareness for heart disease and stroke. According to the American Stroke Association, heart disease still remains the #1 cause of death in the nation while stroke has fallen to #5. What's so sad is that, in most cases, heart disease and stroke are 100% preventable.I say in most cases because in situations like mine, where there was a congenital heart defect involved, there was probably little we could do to prevent my stroke.
Stroke still remains the leading cause of disability and the victims of stroke are getting younger and younger. So while the death rate may be decreasing the occurrence of stroke is actually increasing. The drop in the mortality rate due to stroke is due in part to better health care and, possibly, because of the increase of stroke in younger generations. Let's face it, younger people just bounce back faster. But stroke is still on the rise in older generations because we are living longer lives.
So why are younger people having strokes? Obesity? Diabetes? Fatty diets? Un-diagnosed congenital heart defects? Ignorance?
I applaud the American Heart and the American Stroke Association for bringing such serious issues to light. And please, go RED for hearts everywhere. You just might save a life.
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