24 Hour EEG/Video Monitoring

I was in the hospital for a week several weeks ago. I spent 7 days hooked up to EEG and Video monitoring at the University of Nebraska Medical Center. For those of you who have not had the pleasure of doing this, it is quite the experience. I believe I have an earlier post on the blog about my first stay at a hospital with EEG/Video monitoring, which was 10 years ago.

I have been struggling with what to write in regards to the hospital stay. In some ways I feel like I learned nothing and in other ways I feel like I left the hospital with a sense of freedom and control that I had not had in years. I say this, because while I was monitored I was taken off of my medication completely. Within a few days I was feeling so much better. In fact, I had not felt that good since my diagnosis.

In many ways I felt like I spent the week at UNMC in detox mode... cleansing myself of anticonvulsant. Many of the "things" that were happening to me completely subsided. For example, I would have tremors, jerks, spasms occasionally at night. I was used to this and have had that for years. As soon as the Lamictal was gone, so were the tremors that accompanied the drug. I had associated these tremor-like moments to small seizures, but I believe now that it was the Lamictal that may have been causing this.

Also, within about 2 days of being off of the Lamictal I felt a sense of relief, as the vise-like feeling that had been around my brain seemed to lift. The pressure and head pain was gone for the first time in years. I had not had that feeling of pure sweet relief in years. I hadn't even realized I had an "eternal" headache until I had none.

The hospital stay made me feel "okay" about not having the drug in my system. My safety net was gone, yet I was still living, breathing, and functioning fairly well! I started to notice a short-term memory issue by about day 5 and noticed that it got worse until I started back on my anticonvulsant after returning home.

The hospital stay helped me to differentiate between which "events" were seizures and which events were not events at all, but instead a possible side effect or something else perhaps, but not a clinical seizure. In fact, during my week long stay, I had no recorded seizures on the EEG... yet my EEG was abnormal most of the time.

I started to think that perhaps I had been "cured". And then started to wonder if my seizures had really been "better" these past few years but I was instead experiencing issues because of the drugs and not the seizures at all. It makes me both sad and a little sick to think that possibly I missed the opportunity when my body was ready to be drug-free and seizure-free at the same time.

With the abnormal EEG and the short-term memory exhibiting issues, I knew that the doctor was right and that I would need to be on some type of drug regardless. I was given prescriptions for Keppra and Lamictal at discharge. I left disappointed that I would be on more drugs than what I had been admitted to the hospital with a week earlier.

As my husband drove me home to Lincoln, I thought about things a lot and I just felt too "good" to have to go on the same drug that caused me the tremors and such head pain and also to add a new drug to my routine. I also felt I did not have answers as to why I was having so many issues prior to the hospitalization. Even though there were no recorded clinical seizures at UNMC, I knew that the "events" that were happening to me prior to that stay were "significant" for me. They were so significant that they caused my doctor to feel I needed to monitored. I was not able to reproduce those "events" while on the EEG machine. As much as I dreaded them, I was hoping for them to occur while being monitored so that we could figure some things out.

With all of this having been said, I will say that today, for the first time since my release I experienced something that was similar to what my seizures were like years ago. I felt that sense of doom that sometimes accompanies my auras or seizures and then I felt like I was dreaming. My left arm and hand felt numb. I could move them and touch them but it felt numb to me. But I did not feel panicked or afraid this time.

I did not take the Keppra. I did not even fill the prescription. I did not take the recommended/prescribed dose of the Lamictal either. Instead, I took the small dose that I was started on at the time of discharge. I was to work my way up to a larger dose over the next several weeks or more.

I let my new found sense of freedom and indepedence get the best of me and I have not changed my dose or added the new drug since my discharge... until today.

I left work a little early today because I was able to catch a ride with my folks so that I did not have to drive (I'm not completely stupid after all!). I took my evening dose of Lamictal tonight and added an extra 25 MG to get me closer to where the doctor wanted me to be. I will try this for awhile and see how things go.

My husband and I are expecting to travel to Ethiopia to pick up our new son in the next month or two and I want to make sure that I can make the trip safely and feel secure with how I am feeling before I take such a long flight across the world. I feel a little discouraged tonight, but tomorrow is a new day and I am hoping to find my sense of humor again. Read more!

Insurance blues

My seizures continue to come, even with the medication adjustment. I am waiting for a call from my neurologist as I write this. It seemed at first that the increased dose had controlled them. The increase has definitely made them more mild.

I found out the hard way, that my medication is now available in a generic form. Lamictal has always only had the brand name available. My insurance company has a program through Walgreens mail order service. If you send in a 3 month supply/prescription then your medication is cheaper. I am currently on a high deductible plan. But pharmacy covereage is not the best on this plan. My medication, prior to the increased dose, had a co-pay of around $850.

I sent in my new prescription via mail. About a week or so later I received a generic form of my drug. No one called to tell me a generic was available or ask me if I wanted generic or brand name, as they sometimes will as you if you walk into a pharmacy. My co-pay this time was $517, even with the increased dose.

I am sure that most people assume that generic medication is exactly the same as brand name or non-generic. That is not the case in most situations. And I have always been told to not substitute a generic for an epilepsy medication regardless.

A kind of panic ran through me as I stared at this new bottle of a drug I was afraid to take. Even if I had been having no issues with active seizures, I do not think that I would have been tempted to take the risk of any difference between generic and name brand.

I walked into a walgreens to get a small amount of my pills so that I could continue with my name brand for now until I could sort things out with the mail order issue. They tried to give me generic there as well, but I was able to change it while I was there. Twenty-five pills was $112.

I called Walgreens mail order to try and return the generic drug. They will not take it or refund the amount. They are filling the prescription according to what my insurance company has in place for my coverage apparently. The coverage is stated such that if a generic is available, a generic must be prescribed.

I called the insurance company since this was the first time a generic was available for Lamictal. They said they would not refund it and if I tried to get brand name that they would pay nothing on brand name. They said I could try to appeal their decision. I filed my appeal throught the proper channels and then hung up the phone.

The next day the appeal department returned my call. I tried to explain to her that generic and brand name is not always the same. She said that as long as the active ingredient is the same, that they will only cover generic. Of course the active ingredient is the same, but it does not mean that the pills have the same amount of the active ingredient. Guidelines are different for generic manufactures compared to brand name drugs.

The insurance rep told me that she had seen a claim come in from a Walgreens for a new prescription for me for name brand. I had my doctor call in more pills for me to get by until this was all sorted out. She said they denied the claim and the full price would be mine when I picked them up from the pharmacy. This time, fifty-five pills was $293.

She asked me if I wanted to continue with the appeal. I asked her if I should even bother since now they will not pay anything on my brand name drug. She said it would get denied. So we closed the conversation.

As a third option, and out of defiance, I called the credit card company where the charge had been billed. Because I wanted to return the generic and had not used it I wanted a refund, which was being denied by Walgreens mail order service. My credit card company put the charge in suspense until they could research the claim. You can dispute a charge for certain circumstances. I felt that this may be one of them.

I have not heard back yet from my credit card company, but I will let you know how that turns out! Read more!

Seizures again...

After almost a year of feeling "almost" seizure-free, I had a setback. About two months ago I started having issues with my seizures again. I thought I would describe some of them, because I think it's helpful sometimes for people to read what other people's seizures are like. This sometimes help validate your own seizures, auras, and feelings you also may go through when experiencing simple partial seizures. These types of seizures are always odd and just vary all over the board. So if you're sitting there having one, you may think that you are crazy or what you are feeling or seeing or hearing, and all of the sensations that sometimes accompany these seizures, is not "real". The fact is, it may not be that "visible" to those around you, but what is going on inside can be extremely disturbing. And many times, because these seizures are hard to explain, some people may think you are nuts!

About two months ago I was on a vacation with my husband and his family. We went to a reservoir here in Nebraska and stayed in cabins. Sleeping arrangements were different than the norm, because of the way the beds were laid out and how space permitted. My husband was sleeping in a different room, while I was with my two year old in a bed next door.

I went to bed early so that I could get my daughter to sleep. About 15 minutes after having laid down, I started feeling very "odd". I felt that feeling of doom that sometimes accompanies my seizures. I felt my heart racing and knew that I was probably at the start of an aura. An aura sometimes precedes a seizure and is considered part of a seizure or a seizure in itself. I have always had an aura before my seizure, or some type of warning signs that I was going to have a seizure. At first I thought it wasn't going to be a seizure, but instead I was having some kind of heart attack, as I felt like my heart was going to pound right through to the outside. I tried to calm down, thinking I may just be making it worse, possibly initiating a panick attack.

After about 15 minutes or so of just feeling awful, I started to tremor. Tremors vary during seizures. But for me, different parts and sometimes all limbs are involved, in a jerking medley of sorts. I am familiar with this and thought that perhaps after that happened I would feel better and it would be over. It was not totally uncommon for me to have a few tremors at night prior to falling asleep, if I was really tired. But those were very rare and basically the only type of seizure activity I had had in a long while.

The tremors continued and involved all parts of my body, from my legs, arms, head, and torso. They were not violent shakes, but they came constantly. This was unusual for me, to have them last more than a minute or two. Instead, I shook for 3 minutes or so, then felt like it was going to stop even though the feeling of doom still remained.

Eventually, I was able to get to my husband and he came and laid down with me. I shook for about 20 minutes and just felt miserable. When it was finally over I was eventually able to fall back to sleep. The next morning I felt like I had a hangover. I had a headache and felt completely in a different world. I was upset about what had happened and could not understand why "they" were back. What could have triggered these to occur after all this time.

The following days seemed to fly by. I had a few tremors the next night, but no feeling of doom. I was thankful that it seemed to pass.

Unfortunately, a couple of weeks later, I started having problems with seizures again, only this time they were in a different form. One day at work I had an awful feeling and had felt antsy with anticipation of some type of impending doom. At first I thought it was all in my mind... that there wasn't going to be a seizure and that I was just making it up myself. When I started feeling worse, I headed to the bathroom trying to decide if I was going to throw up or pass out. As I opened the bathroom door, I saw the stalls and they became blurry. I started to feel myself leaving reality. I looked down at my hands and they did not seem like they were a part of my body. I saw myself in the mirror, but did not think it was real. I felt like I was drugged, walking in a daze. I really thought that I would pass out, so I tried to make it to someone's office. I collapsed in the chair and told my co-worker that I was having a seizure.

Most of my co-workers have not seen my seizures. If I had small ones, I remained in my office and just worked through them. It has been rare for me to have issues with seizures here at work.

I threw my head into my hands and bent over in the chair thinking that if I passed out, I would already be part way to the floor. The feeling in my head was so intense. I felt a freezing cold sensation go up my spine and into my skull. I then felt a really hot sensation do the same. My head felt like it was going to burst. My brain felt tight, like it was trying to explode. The tightness was almost too much to bear. My eyes felt like they were being pushed out of their sockets. I put my hands over them so that they would not explode. I then had a strange feeling, as if my brain was bleeding or leaking. It was very disturbing. I thought to myself... Am I dying?

After all of this, I had a quick few tremors/jerks in my arms, and then it was over. From my aura until the end, the whole "event" as my neurologist calls them, lasted about 30 minutes.

A new pattern was established. I continued to have similar seizures the weeks following. They were not constant. I would have one one day and it would be somewhat mild and then I would have one another day that felt devastating to me. My neurologist has increased my dose of medication. So far, one week into it, I am doing much better. I am still having small "events", but they are minor and I do not feel as worried as I was before. They last for a very short time and are always accompanied by an aura.

For those of you who have simple partial seizures, you will understand what you have just read. I can write a book on the different types of simple partial seizures I have had over the past 10 years. Some people may read it and think it is science fiction, but others would understand how devastating it can be to be reminded that you have epilepsy each time a seizure occurs. Read more!

Family ties

I have hesitated for awhile now to post this entry, but because it has been on my mind again lately, I have decided that posting it may help others who have experienced a similar situation.

I have mentioned in the past how supportive my family has been over the years. I could not have made it through those rough times without them. For the most part, I feel that they have educated themselves on Epilepsy just by watching me and seeing the things I'm involved in at this time. I do not feel that they are ignorant or blind to what has happened to me or how seizures have or have not affected my life or my day to day routine. However, with that being said, there are things that have happened that make me realize that some of them may have a different perspective when decisions have to be made.

A few months ago, one of my siblings called me. They asked me if I would consider being a "backup guardian" for my godson if something were to happen to them. They were working on their trust or will to ensure that my nephew would be taken care of in the event of some type of emergency or if something were to happen to his parents. Of course I said "yes" without hesitation. Turns out his primary guardians would be relatives from the other parent's side of the family. Again, these choices are not up to me, and I respect his parents wishes. However, with that being said, it was the next part of the conversation that was very disturbing to me.

My sibling stated that "they" felt that I was not "healthy enough" for them to want my godson to be raised by me in the event that something were to happen to them. I felt like someone slugged me when I heard these words. After all of this time and obviously proving that I am healthy enough to take care of myself and my own family I still have someone close to me consider me as "unhealthy".

There are many definitions and many opinions on what people consider as "healthy". When I was struggling with constant seizures the first few years I would say things like "I don't feel well or I don't feel like myself". I sometimes refer to that period of time as when I was "sick", only for lack of a better word that would summarize the roller coaster of seizures and daily life. In general, though, I feel very healthy and am quite active.

Choosing to have my nephew (who is the same age as my child) raised by a couple who is over 10 years older than me feels terrible and demeaning as it is. To be told you are not "healthy enough" or in "poor health" when all you have ever done was strive to be healthy and take care of yourself is another insult.

It's possible that some of what I am feeling is from the rejection of our international adoption pursuit for our second child. To have another country or entity reject you for your health is a very humbling experience. To have your family question your health when they have seen you thrive is an even harder blow.

Read more!

International Adoption and Epilepsy

I have mentioned in a previous post that my husband and I adopted a little girl from China. We brought her home in July of this past year. We have already started looking into a second adoption, knowing that adoptions can take awhile. We also needed to research new agencies this time around because we would not qualify for China anymore and our last agency only handled Chinese adoptions.

We do not qualify for a Chinese adoption under their new adoption laws that went into affect in May 2007. We were fortunate enough to have been logged in and grandfathered under their previous rules in order to qualify for our daughter's adoption referral.

With plans for child number two, we decided that we wanted to persue international adoption again, because that is where our daugther's experiences are from and we thought her having a sibling with a similar background would be good for her. International adoption was the most fulfilling event my husband and I have ever had.

After some research, I found out that many countries will not accept Epilepsy as a medical condition of adoptive parents. I knew this was true of China, but was surprised at how many other countries find it "unacceptable". Through 3 different agencies, we were on the track for an Ethiopian adoption. Everything seemed to fit and we were enthusiastic of the prospect of starting this journey again.

Unfortunately, last week I received a phone call from one of the agencies stating that they had cheecked with their Ethiopia representative and that Epilepsy would be a medical condition that they could not accept into their program. I felt that this may be an agency issue since approval for Ethiopia was so new to two of the agencies. I phoned the other agencies, who then also verified that Ethiopia would not accept adoptive parents with seizure disorders.

All of this came with such a blow. I thought about it all weekend and worried about what my family and husband must think of me. But my husband is always optimistic and very supportive. To him it was just a little bump that we would get over and we would continue on with something different.

I think some of my frustration in all of this is that I do not feel "sick". I do not think of myself as having some type of "chronic" condition. I do not think of my Epilepsy 24 hours a day anymore. I am certainly reminded at least twice a day as I down anticonvulsant medication. That is always my reality check.

People always assume the worst. I was told that when you say "Epilepsy" in a third world country, you are basically saying that you have a death sentence. I am reminded with each rejection that there is still a long ways to go in educating people. Other countries are at a disadvantage as they have so many other larger issues going on. Focus is certainly not drawn to seizure treatment or research in that field when people are starving and dying of Aids.

I have accepted the rejection of the international adoption programs and feel so lucky to have my daughter with me. I will always cherish the time I spent with her in China and will always respect their traditions, customs, and way of life. It is not the type of world that I would like to live in, but it is certainly one that I will accept and face with as much understanding as possible. Read more!