11 years later and still full of worries...

It has been 11 years since my first seizure and I still think about Epilepsy every day. Seizure control has been good lately so it's not tugging at me constantly, but of course every time I pop one of my epilepsy meds into my mouth I am reminded of the worrying that has nagged me for the past 11 years.

I am out of town on business this week and have 3 more days to go. I had my first seizure experience in a hotel room 11 years ago. It was the scariest thing I have ever gone through and every time I am alone in a hotel room at night by myself I think about that event. It was life altering.

Sometimes I worry about it. I worry that I'll be in this hotel room in a foreign city with no family around. I worry that I will have a significant seizure and that I will not awake in the morning.

My husband was here with me for the first few days, enjoying the sightseeing. My sense of security was gone the day he left and the first evening I was alone here. I am a believer of what is meant to happen will happen and that I will accept things when they come and do the best that I can with the experiences that I have in my life. That all makes sense to me logically, but I don't want to be alone when the big one hits. That is my greatest fear... that my seizures will worsen, that I will lose consciousness and no one will wonder where I am and that I will be in a city with no family around. Because that is exactly what happened 11 years ago.

For people who tend to mostly have simple partial or complex partial seizures, you tend to remember your seizures. Remembering those fears and auras that accompany them can be frightening. I meet a lot of carefree individuals that experience tonic clonic or grand mal seizures. They have no recollection of what has occurred, but of course those surrounding them during a seizure recall every moment of it. If everyone who had Epilepsy had the memory of the seizure event I do not think that I would meet as many people who are careless with taking medication or who self-medicate and take anticonvulsants as if it were aspirin and only medicate if they feel they may have a seizure.

I have met many people who have for years suffered partial seizures or auras and were undiagnosed. Most people have lived with it and just assumed it was "normal"... so much so, that they never even mentioned it to parents while they were growing up. It always comes as such a relief to most people when they are finally diagnosed, even if the diagnosis can be frightening. Having your odd feelings vindicated is a wonderful thing regardless of the long term diagnosis. Once you know what you are dealing with the better equipped you are to handle it. Read more!

Calcium and the Parathyroid

I had no idea that we all have a thing called a Parathyroid until last Fall, when I was told that my blood work came back with high calcium, low vitamin D, and too high of Parathyroid Hormone as well.

It seems that both my pituitary tumor and parathyroid tumor were found as a result of something else being checked. I think of it as bad luck, but perhaps in the end it is good luck that something led to something else and things can be monitored and cared for like they should be.

I wrote at one point about having issues last Fall and being monitored for one week at UNMC's 24 hour EEG/Video monitoring unit. I had been having unusual or out of the ordinary seizures for me. Things were different this time with these breakthrough partial seizures. The monitoring took place and although I had an abnormal EEG I did not have any seizures while I was being monitored.

I continued to have "odd" feelings and things that I felt were like my simple partial seizures or auras like I had had before. Follow up blood work after my hospitalization indicated that my calcium level was continuing to climb. The endocrinologist scheduled my Sestamibi scan, which revealed the tumor on one of my parathyroid glands. I had a follow up ultrasound on my neck as well. This was to check another item that was showing up on the scan. It was an unidentifiable thing.

Surgery was scheduled to remove the Parathyroid and the unidentifiable item for February. Unfortunately, my new little boy from Ethiopia came down with Hepatitis A and was admitted into the hospital for 4 days! Because of my exposure to his active Hepatitis, my surgery had to be postponed for 3 months.

I had surgery 3 weeks ago and am finally feeling pretty "normal". I can only say that if you know of someone or if you yourself have a parathyroid tumor and/or high calcium, that once that is removed and things are regulated, you will feel like a different person. My bones had been aching, literally aching, since at least April of 2008. I remember noticing it, because I had just turned 40 and I thought maybe I was getting arthritis or something. I was so achy. I told my husband that every morning when I woke up it felt like I had been hit by a truck. It was six months later that the calcium blood work revealed the high levels. The tumor was diagnosed in January I believe, and then surgery was in May.

The neck surgeon removed the parathyroid gland/tumor and a lymph node. The surgery itself was not too bad. I noticed in the recovery room as I was waking up that I did not feel achy anymore. I could not believe how quickly I felt the difference. And now 3 weeks later I feel 10 pounds lighter (even though I literally have lost no weight!). My bones felt that heavy and it felt like such an effort to do anything.

I have read on the internet that some people call the parathyroid tumors and high calcium "moans, groans, and psychiatric overtones". I think this is so fitting. And I also believe that some of the things I was feeling emotionally and psychologically and neurologically were all due to high calcium.

The surgery has certainly not taken my Epilepsy away, but it has had those "odd" feelings that I was having back in the Fall go away. I have had no auras or any type of seizure activity since the surgery.

When you have simple partial seizures, it is very difficult at times to differentiate between a seizure and other times when you're just feeling "off" or "odd". I think I had a little of both going on last Fall when I was monitored. I was also suffering from side effects of my Epilepsy drug, Lamictal. I thought I was having myoclonic jerks at night, but once I was taken off all medication in the hospital, the jerking that I did at night went away. It has not come back since I've had the lowered dose. Read more!

Nebraska Epilepsy Walk - March 28, 2009

I am posting some information from one of the other Nebraska volunteers who is heading up a Walk at the Crossroads Mall up in Omaha...

The National Walk for Epilepsy is taking place in Washington DC on March 28th. We have decided to make an "alternative route" here in Omaha. On March 28th from 9:30am - 11:00am inside Crossroads Mall (South Entrance) we will be holding the walk. Walkers registration begins at 9am. Look for the booth with purple and white balloons. This is an opportunity for you to be a part of a major event for Epilepsy right in your own community. Follow the registration below to join the Nebraska team and we hope to see you there.


I have registered a team for Nebraska called Nebraskan's Advocating for Epilepsy.
1. Go to the Epilepsy Foundation Walk Website www.walkforepilepsy.org
2. To the left, click "Find a Participant/Team
3. Click a team look up and type in Nebraska
4. You will see our team pop up and select it.
5. Click my name Stacey Doty and my webpage pops up.
6. Under my picture you will see a box that says, Join Stacey's Team and click it.
7. When you do that, it will ask you to register.
8. Click that you want to be a Virtual Walker and then what you want your fundraising goal to be (it defaults to $250.00).
We have a team goal of $1,000
9. Click Next and complete the rest of the registration items. It will ask you to create an id and password.
This is because when you are done registering, it will take you to your own web page where you can add a picture, update the email addresses, ect.. you will also get a t-shirt to wear to the walk.

10. After you submit your registration fee (which goes towards your fundraising goal) you will want to get to your participation center and then your personal page.

11. In the middle of your personal page there is an underlined sentence asking if you want to edit your personal page. This is how you update your picture and change the message on your personal page. If you like what it says then great, but please update the first paragraph to take out the sentence that the walk is in Washington DC. Replace it with Crossroads Mall 9-11am. You can look and copy my webpage for details on the walk.

12. Once you have your web page updated, within your participation center, to the right, you have an email option. This is how you can get an email out to anyone and everyone to support your cause. The link direct to your web page will be within that email so they are supporting you directly but then ultimately it is also counted towards our team goal of $1,000 and forwarded onto the Epilepsy Foundation on behalf of Nebraska.

Please ask your family, friends, co workers, even you employer to sponsor your team. If they want to walk with us, even better! Read more!

High calcium...

Since my hospitalization in the Fall, I have continued to stay on a very low dose of Lamictal and have been doing fairly well. I was confused when I left the hospital because I felt like I had auras and things going on but yet some of those "episodes" did not record as seizures.

When I was having issues prior to the hospitalization I went to an endocrinologist because I initially thought that I was having seizures and auras based on whether I ate or didn't eat. Thinking it was a blood sugar issue that was setting them off, I thought I should get tested for that. During some routine blood tests it was discovered that my calcium level was high. Readings were 10.8 or 11.2 at times. I was told to take Vitamin D to try and get the calcium lower. Vitamin D helps to regulate calcium.

My calcium level has continued to climb. The doctors suspected a parathyroid tumor or adenoma. I had a nuclear scan called a sestamibi scan. This revealed a tumor on the lower left parathyroid.

Apparently high calcium can cause all kinds of odd symptoms, including some that are neurological in nature. I am hoping that the removal of this tumor will get rid of some of the odd feelings I have had and all of the achiness that I have felt. You would think with high calcium that your bones would be in great shape, but it's actually just the opposite. Your body is not absorbing calcium and calcium is not exiting your body either. If you are in this type of state for very long you can head down a path toward osteoporosis.

I had a dexascan done to check my bone density. I am osteopenia. Some of that is due to the parathyroid tumor and high calcium I am sure. The other part of the equation could be the anticonvulsants that I have been on for the past 11 years.

It's crazy how one thing leads to another and so on and so on.

Life is good in spite of it all. I was scheduled to have surgery tomorrow, but my son was hospitalized last week for Hepatitis A. We recently adopted him from Ethiopia. The doctors feel he may have gotten it in Ethiopia prior to his trip the the U.S. No one else in the house has been sick and we've all had shots for Hepatitis. But because shots cannot guarantee 100% immunity to the Hepatitis, my surgery has been postponed for up to 3 months.

Oh that's right... I said life is good in spite of it all, right? And it is. As frustrating as things seem at times, I feel very fortunate to have such a wonderful supportive family. And I have two beautiful little kids who I would do anything for. I need to be healthy so that I can live a long life with them and watch them grow into wonderful adults some day. Read more!

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!