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.

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!

Reduction in Headache Days

Something I have always struggled with is controlling my migraines. I am one of those unfortunate few whose migraines are triggered by nearly everything. Sights, smells, diet, hormones; you name it. I have tried nearly everything to control these outbreaks, too, because having a migraine two or more times a week is clearly unacceptable. I have tried all of the preventive medications (and currently still take one) and even did Botox for Migraines.

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.

Migraine Diet
By Laura Romero

I included a list of foods that are a good alternative or that would help reduce migraine days by giving you the supplements you need to fight the pain as well.

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.

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.

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.

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.

The Scarecrow

We had a change of insurance this year and with that change I opted to find a new neurologist. I grew tired my last one because he began to treat my problems by shoving more pills at me instead of listening and trying to correct the problem. I know that I have some weird problems and I know that I am an unusual case, but if you're not capable of dealing with it, I would much rather be passed on to a colleague than just passed by.

After my stroke, I developed chronic pain in my right side. It is constant but varies in intensity. Some days I can barely walk, but others I can be pretty active. My new neurologist is not willing to rule out a form of epilepsy due to stroke. And finally, my migraines have worsened considerably over the last three years. So you can imagine why I can be a bit of an enigmatic patient.

I am still leery of my new neurologist because she seems very focused on getting one particular new medication to work for me. But she did take me off of two other ones. And as far as I am concerned, the fewer pills, the better. She did refer me to a headache clinic because she realized that my migraines were out of her realm of expertise. I am grateful for that. And when I do go in to see her, she sits and talks to me like a person should. She never rushes, interrupts or makes assumptions. She listens and makes me feel like she may really have my best interests at heart. In between appointments, her nurse calls to check on my progress. So I think I'm going to stick with her a while longer.

My headache specialist has been really impressive. He made me feel normal. I wish he dealt with chronic pain, too. I got re-approved for Botox for migraines. I am really excited about that because Botox was the only thing that helped to prevent my migraines. He is also trying to find out what is causing all my headaches. I have them nearly everyday. And for anyone that has had migraines, I hope you can empathize. For anyone that hasn't, I hope you don't think I'm just whining about a headache. This doctor has told me that if we can get down to the root of the problem, we can help make my days more pain free. That would be grand.

Pain is the biggest side effect I have from my stroke. I remember it setting in right away. I remember being in recovery and being pain. According to the neurologist it happens, but it is highly unusual. So I thought maybe if I deal with the things that aren't so unusual, I can slowly start feeling better. I'm working on my migraines and my chest pain. Writing helps me work on my agraphia, which is trouble writing after a stroke. I am doing really well with my aphasia as well. Every once in a while I slip and say something really off the wall. But my brain seems to be making the new connections I was promised it would.

"Brains are the only things worth having in this world.” 
― L. Frank Baum, The Wonderful Wizard of Oz

A New Leaf

I decided to move Dizzy Diaries over to this platform because I know that if I open Blogger and see Dizzy Diaries (the blog that started it all) staring at me right in the face, I'll be more apt to updating it like a good writer should. I haven't updated Dizzy Diaries since I decided to leave my job this past Summer. That was one of the hardest decisions I have had to make. So many things have happened since then and I can't possibly relay them all at once. I've decided to break this down into different sets of blogs. This one is going to be the hardest one to write. I want to to share with you the emotional turmoil I went through this summer. One of the things I know I need to work on is sharing the emotional side of stroke recovery, chronic pain, and migraines.

A month ago if you had asked me how I was doing, I would have said I was fine. And I would have been lying through my teeth. From June through most of August I struggled with, what for me, was a pretty severe depression. I felt that I had lost everything and ended up right back where I never wanted to be. Stuck at home. I never wanted to be a housewife and a stay at home mom. I tried it and failed miserably. I am no good at being at home. I'm a terrible housekeeper, I'm impatient, and get anxious when I have to stay in one place for very long. All I ever wanted was a family and a career. I got my family and was working toward a career as I went back to school. But, I had to quit school because of my memory and concentration problems that were a result of my stroke in 2010. So I set about finding the career I always wanted. I did. I loved my job in assisted living. But my body hated. I started having seizures again. I had to make the decision to take care of myself. Unfortunately, that meant staying home again. And that broke my heart.

I spent so many days crying and whining and trying fruitlessly to find a way to change my situation instead of finding peace with it. Nothing was going to make me feel any better. Then came the news that I was no longer allowed to drive because I was experiencing periods of non-responsiveness (my seizures). Color me thrilled. Now, not only did I feel like I was being shoved into this pretty little prepackaged idea of "Happy Homemaker", now someone was trying to try to tie an apron around me and slap some heels on me. I can't even leave my house? Are you kidding me? May as well throw me a vacuum cleaner and a cute polka dot dress. I'm really more of a shorts and sneakers kind of girl.

By the end of July I blew up. The kids were arguing, the mother in law was butting in, the husband had started a new job, the house was a mess, I needed some things for dinner and I was miserable. I yelled some obscenities, stormed out the door and drove to the grocery store. And do you know what? The world went on.

When I got back, I made dinner and locked myself in my bedroom. I think even my husband was afraid to come in at first. I couldn't stop crying. My daughters had written me an apology note because they felt it was all their fault that mommy was going crazy. I still have that note. I think that note saved me. I could do this. I didn't want my kid's memories to be filled with this crazy woman who blew up and stormed out of the house. This woman who cried about everything and stared off into space. Who didn't take them to the pool or the park or play games or sing songs or danced or tickled them or smiled anymore. This woman who always yelled and never strayed far from the couch or the bed. Who was she? Certainly that's not me. Can't be me.

Change doesn't happen overnight. I wouldn't say that I'm even completely better yet. But I feel more like the Laura I knew. I get up every morning and talk to the kids while they get ready for school and we all walk to school together. I laugh more, smile more and yell less. Most days. I have a lot of doctor appointments right now trying to fix the physical things I can fix. I know that will go a long way to helping me heal. I am surrounded by people who love me and support me and forgive me more than I forgive myself. I know I can never repay them, but they know I love them. And I hope that'll do.