Something I haven't talked a lot about is my life with seizures. My last bout with them was about three months ago and boy were they a doozy. If it hadn't been for the quick actions of my husband, a co-worker, and the neurological ICU team at Memorial Hermann, I'm not sure what the final outcome might have been. Seriously.
There was nothing at all significant leading up to this last event. The last seizure I had prior to this was two years ago. A strict medication regimen, an attempt at maintaining low-stress (insert laugh track here), and staying away from my known triggers seemed to be keeping the boogers away. At the very end I'll tell you what we think the culprit(s) was (were), so stayed tuned.
I went to work on a Tuesday, just like any other normal day, and started my normal work routine. Computer. Spreadsheets. Printing. You know, stuff. It was about 9:30 in the morning and I felt the familiar signs. For me, it's like a rush of warmth, dizziness, and sleepiness that starts in the back of my head and slowly spreads to the front. Eventually a wave of darkness takes over and along with it - motionlessness. Like being trapped in my prison. Most of the time I have the wherewithal to be able to call out for help. Of course, this time was different because I was all alone in my office. So the next best thing I could do was call my husband.
By the time Victor answered the phone I was non-responsive, only answering in short grunts and breaths. Alarm bells started going off in his head and he kept talking me through the seizure. These are what they look like - peaceful, sleeping Laura. But it's really a disconnect in my brain. A hardwired reset that takes everything back to zero. After a minute or two he started to panic. I had never been out longer than that and he was still counting the seconds. I believe this episode lasted closer to four to five minutes. When I came to, my speech was slurred and my right side was nearly paralyzed.
I knew better than to panic. Past lessons taught us about TIA's (trans ischemic attacks) and we were no stranger to them. Eventually I became clear headed enough to give him my nearest co-worker's phone number who showed up in a matter of minutes. Once my friend arrived, he decided the best course of action was to call an ambulance and they transported to me Memorial Hermann.
In the ambulance, I told the paramedic I felt another seizure coming on. This one was totally different. My body seized up in ways it never had before. Over and over and over. I remember the air getting pushed out of my lungs so forcefully that the noise coming out of me was nearly unrecognizable as my own voice. I was administered some medication and shortly after it stopped. I wasn't scared. I wasn't concerned. I was nearly relieved it was over.
My husband and both my bosses met me at the hospital. I was immediately admitted to the neurological ICU. I had scans completed, blood drawn, and evaluations done. A possible clot was found in my brain. The only question about it was whether or not the area was a congenital defect - the blockage wasn't a blockage but an area where the veins actually just stopped - or a blockage. No one could tell. Go figure.
We decided to accept the clot buster medication known as TPA. If I had a stroke, it could save my life. If not, I might just be easily bruised for a while.
A little while later I had another seizure. Victor was with me in the room. He noticed my left foot twitching shortly before my whole body convulsed. It was the same macabre dance as in the ambulance. He ran to get the doctors and nurses. They administered some drugs and kept asking me a bunch of questions. I think I answered them, but I don't really remember. Later, after the seizure, Victor overheard a nurse saying something an anxiety attack and had to bite his tongue. That must have been some anxiety attack.
I was in the hospital for two days. They wanted me to go home with a walker. I was able to walk, though very unsteadily. I was out of work for two weeks and so was Victor so he could take care of me. I couldn't shower myself for a few days and needed assistance. I couldn't go up and down the stairs alone for a few days. I was extremely unsteady for about a week.
Eventually my nervous system calmed down. My balance returned. My strength returned. Was it muscle memory? I don't know. The official diagnosis was Todd's Paralysis - a temporary paralysis after a seizure. No stroke, thank God.
The cause? We'll never know for sure but here's the theory:
1) I took 100 mg of my anti-seizure medication. I took it in the form of 50 mg pills. My pharmacy, without telling me, switched me to 100 mg pills. For a short time (anywhere from 1 week to 3 mos) I was double dosing myself. I have taken the double dose of that medication before back when I was having a lot of seizures, but it's been a while. As soon as I realized my mistake I corrected it. I told the EMT and all the doctors at the hospital about the mistake.
2) My insurance company no longer wanted to pay for the name brand of another medication I take that peripherally helps with seizures. It is not that medication's main function, but is a happy side effect. The insurance company asked the pharmacy to switch me to the generic.
3) This all happened at the same time.
In the end I was on three months driving restriction, which was awful on everyone in the house. I had to increase my seizure medication after all. And if I don't answer my phone, all my co-workers start to worry about me. But it could always be worse.
I want to give a special thank you to my company for feeding me for the first week I was out. And for everyone who helped give myself and all my kids a ride when we needed help. And especially for all the patience and understanding during my time of recovery. I am truly blessed and thankful for your all.
Till next time, friends...
Showing posts with label medication. Show all posts
Showing posts with label medication. Show all posts
Sunday, November 17, 2019
Tuesday, August 18, 2015
Breakthrough Seizures
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.
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 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...?
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!
Wednesday, November 5, 2014
Fun With Side Effects
For the last month I have been having terrible heart burn. The kind of heart burn that wakes you up in the middle of the night, forces you to drink a bottle of water and eat a couple of chalky antacids. I began to suspect the culprit may be one of my medications, considering my diet has not changed one iota and one of my dosages did.
I looked up the list of side effects of all my medications in the U.S. National Library Medicine National Institutes of Health website. Have you ever really read these things?
I found that it is possible that one of the medications I take for neuropathic pain can cause heart burn. Trouble is, I've been taking this one for nearly two years, so why now? Another could cause kidney stones. Another, swollen feet, ankles, lower legs and hands. Another, a high or elevated mood (woo hoo!). One of my other ones may cause hair to grow where hair does not usually grow. Crazy.
So later, when I was taking a shower, I was scrubbing off like I usually do and I happened to notice a long black hair growing out of my shoulder. My shoulder! I had just read about this and here I was staring at a random hair growing where hair should not grow. And I'm a brunette. Oh, I certainly plucked that thing out!
So far I have dealt with vivid dreams, insomnia, heart burn and now I am turning into a suburban werewolf. What next?
I looked up the list of side effects of all my medications in the U.S. National Library Medicine National Institutes of Health website. Have you ever really read these things?
I found that it is possible that one of the medications I take for neuropathic pain can cause heart burn. Trouble is, I've been taking this one for nearly two years, so why now? Another could cause kidney stones. Another, swollen feet, ankles, lower legs and hands. Another, a high or elevated mood (woo hoo!). One of my other ones may cause hair to grow where hair does not usually grow. Crazy.
So later, when I was taking a shower, I was scrubbing off like I usually do and I happened to notice a long black hair growing out of my shoulder. My shoulder! I had just read about this and here I was staring at a random hair growing where hair should not grow. And I'm a brunette. Oh, I certainly plucked that thing out!
So far I have dealt with vivid dreams, insomnia, heart burn and now I am turning into a suburban werewolf. What next?
Friday, October 3, 2014
Reduction in Headache Days
The current predicament I am in now is that because of my heart issues I can't take traditional migraine medicines like Imitrex, Maxalt, and Amerge because they are Triptans and constrict blood vessels. Constriction of blood vessels would be counterproductive to what my heart medication is doing, opening my blood vessels, and may cause undo harm. The last time I took a Triptan medication it caused severe chest pain and shortness of breath, so I am rather inclined to agree with this line of thinking.
That leaves me with fighting my migraines on my own. One of the things I have done before is the Migraine Elimination Diet. I did this when I was a teenager to find out what it was in my diet that was causing my migraines (for me it is MSG and sodium nitrate). When my headaches start to get out of control again, I resort back to this and I always end up feeling better.
It is nearly impossible to avoid all of these ingredients all of the time. For example, Autolyzed Yeast Extract is in nearly everything we eat and this is important because Autolyzed Yeast Extract can contain MSG (Monosodium Glutamate). Onion is another hard one to avoid because onion powder is in nearly all the foods we eat. I just read my labels and do my best. You'll find that a lot more restaurants have started posting their ingredients now, so you can go out to eat well prepared.
To do the full Migraine Elimination Diet you are supposed to eliminate all these foods from your diet for a set amount of time. I have read anywhere from two to four weeks is sufficient. Then you reintroduce each food, one at a time, every few days. If one of these ingredients or foods is a migraine trigger for you, you should know within a few hours of consumption. If not, you will feel fine.
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| Migraine Diet By Laura Romero |
Other than eating regularly, getting plenty of rest and exercise and staying hydrated, that might be about all you can do when you are fighting migraines at home. There are plenty of supplements out there to research and I have friends that swear by them (always talk to your doctor). I personally don't take anything my doctor doesn't recommend because I already have a full cocktail of prescription medications, being a stroke survivor and living with a heart defect. So why keep tempting Mother Nature?
I feel the need to state that this is just my personal way of dealing with my migraines. I keep my doctors fully informed of any changes in my diet and health and you should too. I am not a professional. Seek a professional opinion before going on any diet or exercise program. And good luck.
Saturday, August 2, 2014
The Truth About Heart Catheters
My cardiologist had been putting off doing a heart catheter on me because of the invasive nature of the procedure. I did my research. I knew what I was in for. I've been scoped, poked and prodded for the last four years. I've been accused of making up phantom pains and told I'm just seeking attention. And now I finally have a good doctor that is listening to me but he was putting off a procedure that could potentially diagnose my problem, so you could imagine how frustrated I was. So after trying all the heart medications he could think of and all the diagnostic tools he could think of, we were left with nothing but the heart catheter.
About ten days ago I went in for the procedure. The nurses were fantastic. Everything was explained perfectly. When I was taken back to the heart cath lab, I had the option of being put under twilight anesthesia or no anesthesia at all. I chose no anesthesia. Crazy? Maybe. But I had waited so long to find out what has been causing my chest pain that I wasn't going to miss a moment of this. And seeing as how it was going to be my cardiologist performing the heart catheter, I wanted to be fully aware when he discovered what was wrong.
And in they went. The catheter tube goes in through an artery in the groin, which gets numbed up with a local. It's a very odd feeling as the catheter finds its way up through your hip and your ribs to your heart. Though your veins and arteries have no nerve endings, you can kind of feel it 'knocking' around inside of you. (Sorry Dad. If you're reading this, you may want to skip ahead a few paragraphs.) Once it was in my heart I felt a lot of pressure. Now, I don't know if that's normal or not because of the issues that I have; this is just my experience.
Once inside my heart they were able to inject dye in order to act as a contrast to see the inner workings of my heart. With the dye the cardiologist was able to check for any blockages or further heart defects (I had previously had a hole repaired). What he found was pretty cool and I became the case of the month.
Coming off my right coronary artery are a bunch of extra blood vessels that don't belong there. I was born with them, apparently, but they didn't start causing me pain until after I had the hole in my heart repaired four years ago. Me and my crazy anatomy. They were able to conclude that these little guys were the culprit by injecting the dye in them more than once and hearing me openly complain about it more than once. I'm sure it's more scientific than that, but I'm going to go with that.
What's the solution? Well, we tried a beta-blocker drug for about ten days. That didn't work to relieve the pain. Now we're trying a calcium channel blocker. I have a follow up appointment in two weeks. If that doesn't work we have two more options before possibly resorting to another heart surgery. I'll stick with the drugs, thank you very much.
Recovery from the heart catheter was not exactly what I expected. The next day I was in a lot pain. I have had a lot of surgeries and this groin pain still reduced me to a whiny baby. Thank God my husband stayed home and literally did everything for me from fetching my Tylenol to making me a sammich. He's the best.
Incidentally, today is my anniversary. Four years STROKE FREE!
About ten days ago I went in for the procedure. The nurses were fantastic. Everything was explained perfectly. When I was taken back to the heart cath lab, I had the option of being put under twilight anesthesia or no anesthesia at all. I chose no anesthesia. Crazy? Maybe. But I had waited so long to find out what has been causing my chest pain that I wasn't going to miss a moment of this. And seeing as how it was going to be my cardiologist performing the heart catheter, I wanted to be fully aware when he discovered what was wrong.
And in they went. The catheter tube goes in through an artery in the groin, which gets numbed up with a local. It's a very odd feeling as the catheter finds its way up through your hip and your ribs to your heart. Though your veins and arteries have no nerve endings, you can kind of feel it 'knocking' around inside of you. (Sorry Dad. If you're reading this, you may want to skip ahead a few paragraphs.) Once it was in my heart I felt a lot of pressure. Now, I don't know if that's normal or not because of the issues that I have; this is just my experience.
Once inside my heart they were able to inject dye in order to act as a contrast to see the inner workings of my heart. With the dye the cardiologist was able to check for any blockages or further heart defects (I had previously had a hole repaired). What he found was pretty cool and I became the case of the month.
Coming off my right coronary artery are a bunch of extra blood vessels that don't belong there. I was born with them, apparently, but they didn't start causing me pain until after I had the hole in my heart repaired four years ago. Me and my crazy anatomy. They were able to conclude that these little guys were the culprit by injecting the dye in them more than once and hearing me openly complain about it more than once. I'm sure it's more scientific than that, but I'm going to go with that.
What's the solution? Well, we tried a beta-blocker drug for about ten days. That didn't work to relieve the pain. Now we're trying a calcium channel blocker. I have a follow up appointment in two weeks. If that doesn't work we have two more options before possibly resorting to another heart surgery. I'll stick with the drugs, thank you very much.
Recovery from the heart catheter was not exactly what I expected. The next day I was in a lot pain. I have had a lot of surgeries and this groin pain still reduced me to a whiny baby. Thank God my husband stayed home and literally did everything for me from fetching my Tylenol to making me a sammich. He's the best.
Incidentally, today is my anniversary. Four years STROKE FREE!
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| Stroke Free Anniversary Picture by Laura Romero |
Wednesday, July 16, 2014
Muddy Waters
It's no secret that I have been struggling with chest pain for a long time. Off and on for about four years now in fact; ever since my heart surgery in 2010. My first cardiologist told me it was part of the recovery process, my surgeon told me I was making it up and my current cardiologist has actually been trying to help me. It has been very slow going, but it seems that we are starting to narrow down the suspects.
We have tried all the usual tests and medications. I've had stress tests, EKG's, echo-cardiograms, chest x-rays and CT scans of the chest. All of which has always come back normal so we have never been able to pin down a reason for the chest pain. We have tried Ranexa, isosorbide di-nitrate and nitroglycerin tabs as well anti-inflammatory meds with mixed results. Some didn't work at all and some only worked for a short period of time before the chest pain returned and back to the doctor I went.
I suppose on the plus side I have already met my deductible and my out of pocket maximum for the year. And we're only half way through July.
The latest thing we have decided to try is a heart catheter. The reason my cardiologist wanted to put it off for so long is because of the invasive nature of the procedure. It's not normal for someone in their early thirties undergo such a procedure. But I also pointed out to him that it's not normal for healthy 29 year old women to have strokes. He concurred. During the heart cath, the doctor is looking for anything that could be causing the chest pain; scar tissue, heart disease and malformations of the heart. While we're hoping that there is no need for further surgery, I have been made aware that is a possibility, albeit a slim one.
So now I'm just in that place of limbo where obviously I don't want there to be anything wrong but I want there to finally be a solution to one of my problems. The sooner we can take care of this one, the sooner we can take care of the rest. Oh, how I hate saying that there is still more to work on...
Till next time my friends.
We have tried all the usual tests and medications. I've had stress tests, EKG's, echo-cardiograms, chest x-rays and CT scans of the chest. All of which has always come back normal so we have never been able to pin down a reason for the chest pain. We have tried Ranexa, isosorbide di-nitrate and nitroglycerin tabs as well anti-inflammatory meds with mixed results. Some didn't work at all and some only worked for a short period of time before the chest pain returned and back to the doctor I went.
I suppose on the plus side I have already met my deductible and my out of pocket maximum for the year. And we're only half way through July.
The latest thing we have decided to try is a heart catheter. The reason my cardiologist wanted to put it off for so long is because of the invasive nature of the procedure. It's not normal for someone in their early thirties undergo such a procedure. But I also pointed out to him that it's not normal for healthy 29 year old women to have strokes. He concurred. During the heart cath, the doctor is looking for anything that could be causing the chest pain; scar tissue, heart disease and malformations of the heart. While we're hoping that there is no need for further surgery, I have been made aware that is a possibility, albeit a slim one.
So now I'm just in that place of limbo where obviously I don't want there to be anything wrong but I want there to finally be a solution to one of my problems. The sooner we can take care of this one, the sooner we can take care of the rest. Oh, how I hate saying that there is still more to work on...
Till next time my friends.
Monday, June 2, 2014
Fun Friday
My husband has Thursdays off right now so we used that day to run our errands. I also enjoyed an evening out listening to my son's band concert. (He was amazing, as always.) So while Thursday was a little bit busy, it was nothing out of the ordinary. Until that night. I was sitting and watching television after the kids had gone to bed. Nothing unusual there, but suddenly I felt an incredible pressure on my chest; like someone was standing on me. Then it felt like someone was squeezing my rib cage together.
I got up and walked over to husband, who was standing in the kitchen, and told him I didn't feel well. It didn't occur to my to take my nitroglycerin because I wasn't in severe pain. There was just a squeezing sensation. A little later I felt dizzy and there was a throbbing in my temples followed by a headache. Then I couldn't talk. My speech was slurred and I was having severe difficulty finding my words. My right arm and leg were weaker than usual and were experiencing pain.
I suppose any other person would have gone to the hospital right then and there. But not me. These symptoms, especially the aphasia, come on pretty frequently and without warning. So we decided to go to bed and wait it out. When I woke up, I felt pretty much the same, sans headache, and still couldn't speak.
Victor took an unscheduled day off, helped me get the kids ready for school and acted as my interpreter all day. We called the neurologist. She suggested the symptoms were brought on by a seizure or by a migraine and to monitor the symptoms. If they got worse, head to the ER. We called the cardiologist. He said that it sounded like on aura brought on by the headache and that he would head to the ER if symptoms did not resolve in the next few hours.We waited about another hour and decided to go to the hospital because the aphasia had never before lasted more than an hour and we were heading into hour 12.
I hate heading to the hospital whenever I experience a neurological event. One of two things always happen. One, I am not taken seriously. Or two, I am made into a science experiment. On Friday, I they took Door Number One.
After all the tests (electrocardiogram, chest x-ray, CT-scan of the brain, blood work), I am told everything is fine. There was no reason for my symptoms and I can go home as is. With no relief for the chest pain and no explanation for the event. They tried to relieve the pain with both morphine and toradol but to no avail. All I was told was that when patients come in with chest pain with no reason that can be pinned down, they usually chalk it up to stress and anxiety.
I'm not going to deny that I have stress in my life. That would be stupid. I have three kids, a husband, a mother in law and a dog to take care of. I do all the laundry, all the cooking, a large majority of the cleaning, I can't drive till October, I hate being a housewife but I love writing everyday, and I probably won't ever get to back to work ever again. But my kids are a huge help around the house, my husband takes me out whenever he can, and I don't feel particularly anxious and overly stressed. In fact, I have had less migraines in the last few months than I can remember ever having in recent years thanks to changes in diet and household environment. I have had a definite problem with chest pain since my heart surgery in 2010 that we are just now getting under control. And we are only just now starting to under the repercussions of my stroke in 2010. So while stress may have played a part in Friday's events, I feel like it was not the whole story.
This week I am focusing on creating a healthy environment. I feel better when my house is clean and smells nice therefore I am taking that little extra effort to make sure that my house is the way I like it. I am making doubly sure I am eating right, drinking plenty of water, exercising and keeping a daily journal to help get out anything that is bothering me. At this point, I will do anything to keep my heart and brain healthy and working together like clockwork.
I got up and walked over to husband, who was standing in the kitchen, and told him I didn't feel well. It didn't occur to my to take my nitroglycerin because I wasn't in severe pain. There was just a squeezing sensation. A little later I felt dizzy and there was a throbbing in my temples followed by a headache. Then I couldn't talk. My speech was slurred and I was having severe difficulty finding my words. My right arm and leg were weaker than usual and were experiencing pain.
I suppose any other person would have gone to the hospital right then and there. But not me. These symptoms, especially the aphasia, come on pretty frequently and without warning. So we decided to go to bed and wait it out. When I woke up, I felt pretty much the same, sans headache, and still couldn't speak.
Victor took an unscheduled day off, helped me get the kids ready for school and acted as my interpreter all day. We called the neurologist. She suggested the symptoms were brought on by a seizure or by a migraine and to monitor the symptoms. If they got worse, head to the ER. We called the cardiologist. He said that it sounded like on aura brought on by the headache and that he would head to the ER if symptoms did not resolve in the next few hours.We waited about another hour and decided to go to the hospital because the aphasia had never before lasted more than an hour and we were heading into hour 12.
I hate heading to the hospital whenever I experience a neurological event. One of two things always happen. One, I am not taken seriously. Or two, I am made into a science experiment. On Friday, I they took Door Number One.
After all the tests (electrocardiogram, chest x-ray, CT-scan of the brain, blood work), I am told everything is fine. There was no reason for my symptoms and I can go home as is. With no relief for the chest pain and no explanation for the event. They tried to relieve the pain with both morphine and toradol but to no avail. All I was told was that when patients come in with chest pain with no reason that can be pinned down, they usually chalk it up to stress and anxiety.
I'm not going to deny that I have stress in my life. That would be stupid. I have three kids, a husband, a mother in law and a dog to take care of. I do all the laundry, all the cooking, a large majority of the cleaning, I can't drive till October, I hate being a housewife but I love writing everyday, and I probably won't ever get to back to work ever again. But my kids are a huge help around the house, my husband takes me out whenever he can, and I don't feel particularly anxious and overly stressed. In fact, I have had less migraines in the last few months than I can remember ever having in recent years thanks to changes in diet and household environment. I have had a definite problem with chest pain since my heart surgery in 2010 that we are just now getting under control. And we are only just now starting to under the repercussions of my stroke in 2010. So while stress may have played a part in Friday's events, I feel like it was not the whole story.
This week I am focusing on creating a healthy environment. I feel better when my house is clean and smells nice therefore I am taking that little extra effort to make sure that my house is the way I like it. I am making doubly sure I am eating right, drinking plenty of water, exercising and keeping a daily journal to help get out anything that is bothering me. At this point, I will do anything to keep my heart and brain healthy and working together like clockwork.
Wednesday, May 21, 2014
What the Heart Wants
I have been struggling with moderate to severe chest pain off and on for nearly four years, ever since my heart surgery. The reactions I have had from the medical community have varied. I have been pushed aside, ignored, regarded with suspicion, told I was lying and told I was crazy. I have been fortunate (finally) after all this time to have found a cardiologist who not only listens but agrees that a normal, healthy woman in her early thirties should not be experiencing chest pain and shortness of breath.
For just over a year he and I have been working together to try and find a root cause to the symptoms. My doctor is not always as aggressive as I would be, but at least he hasn't given up on me. Recently we tried a different approach with my medications. The Ranexa I had been taking had ceased to be effective in controlling the pain so we stopped it all together. He gave a prescription for nitroglycerin pills to try out. When my chest pain got really bad I was to take one, under the tongue. After trying it out five times I was to call him and, if it worked, I would get a new prescription for a new heart medication.
Well, within a week I had given the nitro a good trial run so I called the doctor back. I have a new prescription for isosorbide. It's a medication designed to relax and dilate blood vessels so blood can flow more easily. So far it seems to be working. I have a steady low ache instead of a stabbing pain, so that's some improvement. I have the nitro for sudden, strong pain. I'm supposed to keep them with me all the time. I feel like one of those old men in the movies who suddenly collapses and gasps for his pills.
There are still no clues as to the reasons for the pain and my doctor hesitates on running any further tests. I understand why. Everything so far has declared me fit and healthy and he is doesn't want to put me under undo stress for nothing if more tests also reveal no answers. I get it, I do. But my thinking is that where there is pain (and has been for a long while) there has to be a reason. Right?
For just over a year he and I have been working together to try and find a root cause to the symptoms. My doctor is not always as aggressive as I would be, but at least he hasn't given up on me. Recently we tried a different approach with my medications. The Ranexa I had been taking had ceased to be effective in controlling the pain so we stopped it all together. He gave a prescription for nitroglycerin pills to try out. When my chest pain got really bad I was to take one, under the tongue. After trying it out five times I was to call him and, if it worked, I would get a new prescription for a new heart medication.
Well, within a week I had given the nitro a good trial run so I called the doctor back. I have a new prescription for isosorbide. It's a medication designed to relax and dilate blood vessels so blood can flow more easily. So far it seems to be working. I have a steady low ache instead of a stabbing pain, so that's some improvement. I have the nitro for sudden, strong pain. I'm supposed to keep them with me all the time. I feel like one of those old men in the movies who suddenly collapses and gasps for his pills.
There are still no clues as to the reasons for the pain and my doctor hesitates on running any further tests. I understand why. Everything so far has declared me fit and healthy and he is doesn't want to put me under undo stress for nothing if more tests also reveal no answers. I get it, I do. But my thinking is that where there is pain (and has been for a long while) there has to be a reason. Right?
Tuesday, April 22, 2014
Heart of the Matter
I think I tend to hold off on updating this blog most often of all my blogs because I feel sometimes like I am just coming here to complain. But I don't want to sound like I am complaining. This is about stroke recovery. I have a wonderful life. Sure, there are things I would change if I could. I would love to be able to go back to work or at least make a living working at home. Unfortunately, my health has taken a toll on me in such a way that is just not going to happen any time soon.
I had a date in mind. On June 24 I was going to be allowed to drive again. You have to be six months seizure free before you are allowed to drive. In the state of Texas, physicians don't have to report patients to any authorities when they are experiencing seizures. However, if someone were to have an accident and it were to come out that they have a history of seizures, their license could be taken away permanently. So it's better to be safe than sorry. On April 8, my six months started all over again.
And that has been followed by two weeks of dizziness, nausea, weakness and sometimes periods of disorientation. So I have been a mess. To top it all off, about a month ago I began experiencing chest pain again. I went back in for a visit with my cardiologist. We bumped up the dosage of angina medication. But if in two weeks of taking it, it doesn't work I may have to go in for a heart catheter to look for any blockages or abnormalities that could be causing the pain. It has been one week and I have seen no change.
What bothers me the most about feeling so bad is that it cuts into the time spent with my kids. I had to quit walking them to and from school after one day when I barely it back home. That is valuable time I lost talking and playing with my children. Not to mention the fact I probably embarrassed the hell out them when I sat down on the sidewalk with my head on knees when I got so dizzy I was afraid I would collapse. I also lost several days not meeting my goal this month for my Writing 12 in 12 challenge. It's National Poetry Month and I was trying to write a poem a day, but I couldn't even look at a computer screen for more than a week.
And to my precious nephew, who had to turn four without his Aunt Lala, I am so sorry I couldn't make it to your party. I hope it was wonderful and fantastic and everything you wanted it to be. You are such a big boy and no one will ever love you like I do. I promise I will do my best to be there for every one of your milestones but sometimes I have some hurdles I have to jump over to be there. Hugs and kisses to mommy and daddy. Lala loves you.
I had a date in mind. On June 24 I was going to be allowed to drive again. You have to be six months seizure free before you are allowed to drive. In the state of Texas, physicians don't have to report patients to any authorities when they are experiencing seizures. However, if someone were to have an accident and it were to come out that they have a history of seizures, their license could be taken away permanently. So it's better to be safe than sorry. On April 8, my six months started all over again.
And that has been followed by two weeks of dizziness, nausea, weakness and sometimes periods of disorientation. So I have been a mess. To top it all off, about a month ago I began experiencing chest pain again. I went back in for a visit with my cardiologist. We bumped up the dosage of angina medication. But if in two weeks of taking it, it doesn't work I may have to go in for a heart catheter to look for any blockages or abnormalities that could be causing the pain. It has been one week and I have seen no change.
What bothers me the most about feeling so bad is that it cuts into the time spent with my kids. I had to quit walking them to and from school after one day when I barely it back home. That is valuable time I lost talking and playing with my children. Not to mention the fact I probably embarrassed the hell out them when I sat down on the sidewalk with my head on knees when I got so dizzy I was afraid I would collapse. I also lost several days not meeting my goal this month for my Writing 12 in 12 challenge. It's National Poetry Month and I was trying to write a poem a day, but I couldn't even look at a computer screen for more than a week.
And to my precious nephew, who had to turn four without his Aunt Lala, I am so sorry I couldn't make it to your party. I hope it was wonderful and fantastic and everything you wanted it to be. You are such a big boy and no one will ever love you like I do. I promise I will do my best to be there for every one of your milestones but sometimes I have some hurdles I have to jump over to be there. Hugs and kisses to mommy and daddy. Lala loves you.
Thursday, December 5, 2013
Baby Steps
I (finally) had my follow up appointment with my neurologist on Tuesday. My husband came with me, mostly because I am still not allowed to drive, but also as support. I like it when he tags along because he is one of my biggest advocates. He is all about helping me communicate with the doctors to try to move forward and find a solution to my problems.
As it turns out, there only three medications out there that can help with the neuro-pathic pain I have on my right side. I have tried all three. Amitriptyline I can no longer take because one of the side effects is seizures. Well, I already have those. Don't think I would like to have any more. Lyrica, the second one, is one I have taken before and complained about endlessly. I took Lyrica about two years ago when I was trying to finish my Bachelor's degree. I didn't like the initial side effects. It made me very loopy for a very long time, until I got used to it. Then it made me gain a lot of weight. My previous doctor took me off of it because he thought it was responsible for my memory problems. It wasn't. There was no change to my short term memory issues after we changed my medications around. Neurontin is the third medication for the pain. It isn't working at all. The Lyrica did it's job. When I think back on things, I remember being much more active than I am now. I was in less pain. Not pain free, but better off than I am now. I think that is a better place to be. So we decided to try the Lyrica again.
I have to go through the loopy stages, which I really hate, but I hope and pray that it will be worth it. One of the added benefits is that it is also an anti-seizure medication. So if all goes well, I may even have a reduction in the amount of seizures I have. It's hard not to get my hopes up about it, but it sure would be nice to be able to take myself to the grocery store, the library, the mall, my friends' houses, anywhere really. I even had hopes of going back to work, but I know that is probably not ever really going to happen. So I'll just keep on keeping on with the writing.
I got the courage up to submit two shorts to a competition recently. Mine weren't chosen, but it was fun writing them. I also participated in the National Novel Writing Month (NaNoWriMo) in November. I didn't make it to the desired 50,000 words in 30 days. In fact, I only wrote 6,337 but it was a lot of fun writing it. And I'm not finished, just distracted. I will complete my novel and continue on to finish my non-fiction piece as well. I am finally feeing good about things.
As it turns out, there only three medications out there that can help with the neuro-pathic pain I have on my right side. I have tried all three. Amitriptyline I can no longer take because one of the side effects is seizures. Well, I already have those. Don't think I would like to have any more. Lyrica, the second one, is one I have taken before and complained about endlessly. I took Lyrica about two years ago when I was trying to finish my Bachelor's degree. I didn't like the initial side effects. It made me very loopy for a very long time, until I got used to it. Then it made me gain a lot of weight. My previous doctor took me off of it because he thought it was responsible for my memory problems. It wasn't. There was no change to my short term memory issues after we changed my medications around. Neurontin is the third medication for the pain. It isn't working at all. The Lyrica did it's job. When I think back on things, I remember being much more active than I am now. I was in less pain. Not pain free, but better off than I am now. I think that is a better place to be. So we decided to try the Lyrica again.
I have to go through the loopy stages, which I really hate, but I hope and pray that it will be worth it. One of the added benefits is that it is also an anti-seizure medication. So if all goes well, I may even have a reduction in the amount of seizures I have. It's hard not to get my hopes up about it, but it sure would be nice to be able to take myself to the grocery store, the library, the mall, my friends' houses, anywhere really. I even had hopes of going back to work, but I know that is probably not ever really going to happen. So I'll just keep on keeping on with the writing.
I got the courage up to submit two shorts to a competition recently. Mine weren't chosen, but it was fun writing them. I also participated in the National Novel Writing Month (NaNoWriMo) in November. I didn't make it to the desired 50,000 words in 30 days. In fact, I only wrote 6,337 but it was a lot of fun writing it. And I'm not finished, just distracted. I will complete my novel and continue on to finish my non-fiction piece as well. I am finally feeing good about things.
Thursday, November 14, 2013
Laura's Bad, Awful Day
Whenever I have a bad day, or even an unlucky string of them, I often think back to a Sesame Street book I remember reading when I was a child. Grover's Bad, Awful Day is a book about how things in Grover's world went from bad to worse to truly awful in the eyes of a child. I can really relate to that right now. As an adult I no longer get too bent out of shape when I spill my milk or leave my lunch at home. The things that get me down are no longer the problems of little monsters. I have adult size problems now that require more than my Mommy and a little ice cream to help me figure them out.
It has been so hard lately not to get discouraged at the lack of progress I seem to be making. If anything I feel like with every step forward I make, I take two steps back. This week alone I had a debilitating migraine, killer chest pain, nearly unbearable right pain side, and two seizures. I have had to face the facts that even if my heart is in the right place, I can't do everything on my own.
I realized that I am still just so angry. Not in a "Why me?" kind of way, but more in an "I don't understand" kind of way. I don't understand why I can't just hop back on where I left off. I don't understand what I'm supposed to do now. I don't understand how I'm supposed to fix this. I don't understand why my case is so special that no one can figure it out. I can't figure out how best to make myself understood.
The only solution to my problems has been to let go. I don't have the luxury of being too proud to accept help. It's ok to let people in and let them do things for me and for my family. They wouldn't offer if they didn't want to do it. I offer to help all the time because I truly want to be of assistance. Why should I feel so skeptical of others? I need to accept my limitations and move on. No big deal, right? (I say that, but it is still a big deal)
So maybe my bad, awful days aren't as bleak as I imagine. I have family and friends to help me through, if only I will let them. Bad days are good if for nothing else but to make the rest of the days look good by comparison.
It has been so hard lately not to get discouraged at the lack of progress I seem to be making. If anything I feel like with every step forward I make, I take two steps back. This week alone I had a debilitating migraine, killer chest pain, nearly unbearable right pain side, and two seizures. I have had to face the facts that even if my heart is in the right place, I can't do everything on my own.
I realized that I am still just so angry. Not in a "Why me?" kind of way, but more in an "I don't understand" kind of way. I don't understand why I can't just hop back on where I left off. I don't understand what I'm supposed to do now. I don't understand how I'm supposed to fix this. I don't understand why my case is so special that no one can figure it out. I can't figure out how best to make myself understood.
The only solution to my problems has been to let go. I don't have the luxury of being too proud to accept help. It's ok to let people in and let them do things for me and for my family. They wouldn't offer if they didn't want to do it. I offer to help all the time because I truly want to be of assistance. Why should I feel so skeptical of others? I need to accept my limitations and move on. No big deal, right? (I say that, but it is still a big deal)
So maybe my bad, awful days aren't as bleak as I imagine. I have family and friends to help me through, if only I will let them. Bad days are good if for nothing else but to make the rest of the days look good by comparison.
Thursday, October 17, 2013
Making Plans
October 29 is World Stroke Day. I love telling people my story, but I still struggle with living with the aftermath of my stroke. Sometimes I don't know what's worse. Trying to explain myself to doctors that don't understand or being forced to explain myself to people that make me feel like I'm just giving excuses. This week has been a tough one on us. I say "us" because recovery is a family affair.
I had two of my seizure-like episodes (un-diagnosed but suspected to be a form of epilepsy) this week. After I have one, it takes me a few days to recover. I feel exhausted and drained for sometimes a week afterward. My seizures consist of periods of time in which I sort of just black out. Most of the time I remain conscious, but every once in a while I lose that time entirely. During these episodes I am unresponsive, dizzy and nauseous. After these episodes I am nauseous, I usually have a headache, I am tired and my right arm and leg hurt even more than usual. Sometimes I get angry and obstinate after these episodes with whomever is directly around me, but not always. I am not supposed to drive for six months after I have an episode. Even though they haven't been able to diagnose them as seizures, I have "periods of non-responsiveness" and am therefore not permitted to drive. I'm a liability.
This weekend I have volunteered my services for the annual Fall Festival at my children's elementary school. I felt so bad telling the PTO (of which I am a member) that I am happy to help out, but I cannot do much of anything. I need to have a job where I am sitting most of the time. I always feel like I am giving excuses when I have to say things like this. We had a hard time finding student volunteers this weekend because our Fall Festival coincided with the local high school's Homecoming Dance. And here I am saying, "Well, I'll help, but not that much." I'm in charge of tickets that day and I agreed to help with clean up. It's just the looks I get when I try to explain why I can't be on my feet all day, why I can't use my right hand, why I can't run multiple booths, why I can't carry anything too heavy... Excuses, excuses, excuses...
Next weekend we plan on taking the kids to the Renaissance Festival. My husband is so concerned about me and knows that I will do anything not to ruin my children's fun, including letting myself go through the day in pain, that he wants to rent me a wheelchair for the day. I think it's a good idea. I know that I can't go the entire day walking around without having to be flat on my back for the entire next week because of the pain it will cause in my right leg. My medication isn't working, something I need to call my neurologist about. Again. I don't know why she's so stuck on me taking Neurontin, but that's a different story. It has me wondering now if I can persuade my doctors to help me get a permanent wheelchair. We already know that I end up being housebound because I can't walk due to pain. I avoid day-long activities and outings because of it; have for three years now. I have even turned invitations down because of the physical exertion that it would take just to go out. To us it makes perfect sense, but I don't know that it will make sense to the medical community. I guess it doesn't hurt to ask. And it's not like I would take advantage of it. I would only need it so we could do all day outings like museums, fairs, festivals, concerts and such.
Stroke recovery is a never ending process. It has been quite a journey trying to find the right doctors, haggle with insurance and fight for my patient rights. It upsets me that I still have to deal with stares and ugly looks from perfect strangers when I park in a Handicap space. But I have finally found my voice. It took a stroke, but I feel I finally know who I am. Deal with it.
I had two of my seizure-like episodes (un-diagnosed but suspected to be a form of epilepsy) this week. After I have one, it takes me a few days to recover. I feel exhausted and drained for sometimes a week afterward. My seizures consist of periods of time in which I sort of just black out. Most of the time I remain conscious, but every once in a while I lose that time entirely. During these episodes I am unresponsive, dizzy and nauseous. After these episodes I am nauseous, I usually have a headache, I am tired and my right arm and leg hurt even more than usual. Sometimes I get angry and obstinate after these episodes with whomever is directly around me, but not always. I am not supposed to drive for six months after I have an episode. Even though they haven't been able to diagnose them as seizures, I have "periods of non-responsiveness" and am therefore not permitted to drive. I'm a liability.
This weekend I have volunteered my services for the annual Fall Festival at my children's elementary school. I felt so bad telling the PTO (of which I am a member) that I am happy to help out, but I cannot do much of anything. I need to have a job where I am sitting most of the time. I always feel like I am giving excuses when I have to say things like this. We had a hard time finding student volunteers this weekend because our Fall Festival coincided with the local high school's Homecoming Dance. And here I am saying, "Well, I'll help, but not that much." I'm in charge of tickets that day and I agreed to help with clean up. It's just the looks I get when I try to explain why I can't be on my feet all day, why I can't use my right hand, why I can't run multiple booths, why I can't carry anything too heavy... Excuses, excuses, excuses...
Next weekend we plan on taking the kids to the Renaissance Festival. My husband is so concerned about me and knows that I will do anything not to ruin my children's fun, including letting myself go through the day in pain, that he wants to rent me a wheelchair for the day. I think it's a good idea. I know that I can't go the entire day walking around without having to be flat on my back for the entire next week because of the pain it will cause in my right leg. My medication isn't working, something I need to call my neurologist about. Again. I don't know why she's so stuck on me taking Neurontin, but that's a different story. It has me wondering now if I can persuade my doctors to help me get a permanent wheelchair. We already know that I end up being housebound because I can't walk due to pain. I avoid day-long activities and outings because of it; have for three years now. I have even turned invitations down because of the physical exertion that it would take just to go out. To us it makes perfect sense, but I don't know that it will make sense to the medical community. I guess it doesn't hurt to ask. And it's not like I would take advantage of it. I would only need it so we could do all day outings like museums, fairs, festivals, concerts and such.
Stroke recovery is a never ending process. It has been quite a journey trying to find the right doctors, haggle with insurance and fight for my patient rights. It upsets me that I still have to deal with stares and ugly looks from perfect strangers when I park in a Handicap space. But I have finally found my voice. It took a stroke, but I feel I finally know who I am. Deal with it.
Thursday, October 3, 2013
Bad Medicine (One Week and Counting...)
It is no secret that I have been a big proponent of Botox for migraines. It was the only thing that helped me control my migraines when they got so bad that I was suffering from them on an almost daily basis. Unfortunately, I only received one round of Botox for migraines before my insurance lapsed due to a job change. I am currently awaiting approval for the treatment to restart under our current insurance plan; but let me tell you a little story about what happens when your insurance company takes the liberty to charge you for a treatment you never received.
In June of 2012 I received my first Botox treatment and it was meant to be re-administered every three months. Late August of 2012 I called the doctor's office and requested the reorder. I knew at the time that my husband would be changing jobs and that our insurance would be lapsing on October 15. I informed the doctor's office of this. I called the office every week through mid October to inquire about the Botox order and was told that it had either not yet been ordered or had not approved by the insurance company. By the last conversation, I told them it was too late and the order would have to be cancelled.
Many months later I began to get bills from Optum Rx (previously Prescription Solutions) for $105. I had never used Optum Rx, so I never opened most of the letters I got from this company. I didn't know at the time that they were previously Prescription Solutions. By the time I opened the letters, the debt was in internal collections. Well, unfortunately for me, my new insurance company, in their infinite wisdom, has chosen Optum Rx as their mail order provider for all my convenient prescription needs. And now Optum Rx has placed a hold on my account because of this $105 debt.
I called Optum Rx and very clearly stated that I am NOT validating this debt, but I am inquiring to find out what it is about. Guess what? It was about the Botox treatment I never received. Say what? I told the lady on the phone the whole story, but she could have cared less because, after all, she has a designated script to stick to. She has to get me off the phone to get to the next caller. She said because the Botox was under my name and was shipped to my doctor, it was my responsibility. End of story.
Two Problems with that:
1) I cancelled the order.
2) Prescription Solutions had a policy that they had to have my verbal permission to act on my behalf in order to ship a controlled substance. How do I know this? Because I had already been through the procedure once before. AND because they called me exactly one time to try to get my permission for said shipment. I missed the call and it had gone to my voice mail. That prompted me to call my doctor's office to reiterate that I no longer had insurance and to cancel the order. Why do I remember this? Because I went off on them about having had two months to do their job and having done it very poorly.
The Optum Rx lady suggested I call the doctor's office clear up my debt but that the hold on my account would still stand. So I told her that I would never choose by my own free will to ever use Optum Rx as a mail order prescription company. I hate mail order services and much prefer my local Walgreens. Yeah, I said that.
So I called the doctor's office and they called me back the next day. She was very nice and genuinely sounded concerned, especially after I told her the story about they had dropped the ball and that I was now seeing someone else (it not me, it's you). She read my file notes to me. According to what the insurance company told them, they tried to contact me multiple times and due to nonpayment from the patient (me), they were unable to ship the Botox.
What?!?! Hold the phone.
If you consider calling me once and leaving me one voice mail, contacting me multiple times, then yes, you contacted me multiple times. In June of 2012, when I had my first Botox treatment, I paid for it happily. Of course, I also recall giving the company handling this controlled substance my verbal permission to act on my behalf. It was procedure because the FDA regulates Botox shipments. I also remember Optum Rx (then Prescription Solutions) leaving me that one message seeking my permission to ship the Botox. They never got my permission to ship anything. It may have my name on it and may have been shipped to my doctor, but I never gave them my permission. So it is really my responsibility? And here's the kicker.
Wait for it...
My doctor's office never received a shipment of Botox with my name on it. What they did receive were a bunch of nasty notes from Optum Rx saying that I am a patient that refuses to pay for services.
Services Optum Rx claims to have rendered. Services I never received. Services my doctor's office can prove they never provided me. Not to mention a now missing box of Botox. I bet the FDA would love to hear that.
So to update my little story, Optum Rx requested my contact information on Friday, October 4, 2013 for customer service to be able to reach me. They haven't reached me yet... I'll let you know how it goes when they do. Till then, I'll keep posting Bad Medicine if you'll keep sharing it because as a stroke patient, I know how important it is to keep to my medication supply in stock.
In June of 2012 I received my first Botox treatment and it was meant to be re-administered every three months. Late August of 2012 I called the doctor's office and requested the reorder. I knew at the time that my husband would be changing jobs and that our insurance would be lapsing on October 15. I informed the doctor's office of this. I called the office every week through mid October to inquire about the Botox order and was told that it had either not yet been ordered or had not approved by the insurance company. By the last conversation, I told them it was too late and the order would have to be cancelled.
Many months later I began to get bills from Optum Rx (previously Prescription Solutions) for $105. I had never used Optum Rx, so I never opened most of the letters I got from this company. I didn't know at the time that they were previously Prescription Solutions. By the time I opened the letters, the debt was in internal collections. Well, unfortunately for me, my new insurance company, in their infinite wisdom, has chosen Optum Rx as their mail order provider for all my convenient prescription needs. And now Optum Rx has placed a hold on my account because of this $105 debt.
I called Optum Rx and very clearly stated that I am NOT validating this debt, but I am inquiring to find out what it is about. Guess what? It was about the Botox treatment I never received. Say what? I told the lady on the phone the whole story, but she could have cared less because, after all, she has a designated script to stick to. She has to get me off the phone to get to the next caller. She said because the Botox was under my name and was shipped to my doctor, it was my responsibility. End of story.
Two Problems with that:
1) I cancelled the order.
2) Prescription Solutions had a policy that they had to have my verbal permission to act on my behalf in order to ship a controlled substance. How do I know this? Because I had already been through the procedure once before. AND because they called me exactly one time to try to get my permission for said shipment. I missed the call and it had gone to my voice mail. That prompted me to call my doctor's office to reiterate that I no longer had insurance and to cancel the order. Why do I remember this? Because I went off on them about having had two months to do their job and having done it very poorly.
The Optum Rx lady suggested I call the doctor's office clear up my debt but that the hold on my account would still stand. So I told her that I would never choose by my own free will to ever use Optum Rx as a mail order prescription company. I hate mail order services and much prefer my local Walgreens. Yeah, I said that.
So I called the doctor's office and they called me back the next day. She was very nice and genuinely sounded concerned, especially after I told her the story about they had dropped the ball and that I was now seeing someone else (it not me, it's you). She read my file notes to me. According to what the insurance company told them, they tried to contact me multiple times and due to nonpayment from the patient (me), they were unable to ship the Botox.
What?!?! Hold the phone.
If you consider calling me once and leaving me one voice mail, contacting me multiple times, then yes, you contacted me multiple times. In June of 2012, when I had my first Botox treatment, I paid for it happily. Of course, I also recall giving the company handling this controlled substance my verbal permission to act on my behalf. It was procedure because the FDA regulates Botox shipments. I also remember Optum Rx (then Prescription Solutions) leaving me that one message seeking my permission to ship the Botox. They never got my permission to ship anything. It may have my name on it and may have been shipped to my doctor, but I never gave them my permission. So it is really my responsibility? And here's the kicker.
Wait for it...
My doctor's office never received a shipment of Botox with my name on it. What they did receive were a bunch of nasty notes from Optum Rx saying that I am a patient that refuses to pay for services.
Services Optum Rx claims to have rendered. Services I never received. Services my doctor's office can prove they never provided me. Not to mention a now missing box of Botox. I bet the FDA would love to hear that.
So to update my little story, Optum Rx requested my contact information on Friday, October 4, 2013 for customer service to be able to reach me. They haven't reached me yet... I'll let you know how it goes when they do. Till then, I'll keep posting Bad Medicine if you'll keep sharing it because as a stroke patient, I know how important it is to keep to my medication supply in stock.
Monday, September 23, 2013
One Week Later
It has been one week since I started taking Ranexa for my chest pain. The good news, the very good news, is that I can walk across the parking lot without sounding like I ran a three minute mile. That brings me one step closer to my goal of being able to work out again. Then maybe I can counter act the weight gaining side affect of my other medication. The bad news is that it still makes me really nauseous so I haven't been able to eat as much as I would like. My chest pain has decreased as well. I am so much more comfortable than I was a week ago. Not perfect, but a significant improvement.
Today I am going to call the neurologist and talk to her about the side effects of the Neurontin. That's the one that is making me gain weight. But I can't exactly call in and say, "Hey, my vanity is getting the best of me, is there anything else we can do to help with my chronic pain?" But it does make me really drowsy during the day. And that is a really big problem because I have things to do that don't always include sleeping on the couch. Then again it is a really good excuse not to do housework...
I may have to rethink this...
Today I am going to call the neurologist and talk to her about the side effects of the Neurontin. That's the one that is making me gain weight. But I can't exactly call in and say, "Hey, my vanity is getting the best of me, is there anything else we can do to help with my chronic pain?" But it does make me really drowsy during the day. And that is a really big problem because I have things to do that don't always include sleeping on the couch. Then again it is a really good excuse not to do housework...
I may have to rethink this...
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