Friday, September 4, 2009

Compelling Story...

I always have to chuckle a little when I access my blog to post. It says "has a compelling story to tell..." I never wrote that, so it is someone's opinion. And I do appreciate the "compelling" part, but my "story" or experiences are like thousands of other people who have Epilepsy. The only difference is that I do not mind talking or writing about it. Many people have far more compelling stories than I.

I am up late tonight with a sleepless infant and now I am wide awake as if it's time to go to work and yet it's only 2 AM. If the gym were open 24 hours, I would go there. I would be so skinny if the gym were open 24 hours a day. That way, whether the baby is up at midnight or at 2 AM I could jump in the car, drive 5 minutes, and be on a treadmill. Just think of how healthy I'd be!

But the truth is, I am sitting here at my keyboard trying to get caught up on work and also some loose ends that have been plaguing me around the house. And in the back of my mind I am wondering how long I'll be able to stay up tonight without causing issues for me tomorrow.

I know I am not the only mother who has epilepsy who is up tonight with an unhappy baby. Perhaps we should start a newsgroup or blog just for those late night moments when motherhood seems so impossible with juggling it all and surviving from day to day.

My husband is wonderful. But even after having known me for 4 years, I still don't think he truly grasps the issues that I have when I am not able to sleep fully through the night. I cannot even remember the last time that I have slept more than 2 hours in a row or been able to sleep for more than 5 or 6 hours a night. And although I'm not the only one that gets up with the kids late at night, I am still always wide awake when I hear them and I watch him glide into one of their rooms to tend to them.

For the most part, we try to do things 50/50, but with the baby it does seem at times that he more often than I end up in the room comforting him or rocking him back to sleep.

I do not know how to explain to him how my brain feels at this hour. How do you tell someone that your brain feels like it's falling apart (literally). At times, I have felt like I am barely hanging onto reality because I am so tired. The funny thing is.. I don't necessarily feel physically tired. It's just my brain. My brain is just tired. It is not my body, but my brain that is craving sleep. How does one explain that to someone who does not have seizures?

I did manage to make it to the gym last night. And as I was on the treadmill there were a few moments that I felt I had missed... perhaps it was just seconds. It caught me off guard at first. I am still unsure if it was a simple partial seizure like I have had in the past or if it's truly just a side effect of a sleep deprived brain. Perhaps the mom next to me on the treadmill was doing the same thing, but she wasn't having seizures.

It is very difficult at times with simple partial seizures to tell if you are having an aura, having a full blown seizure, or in my case the past few days, just plain tired.

I received an email from someone this evening. She has had seizures for years, but did not know that they were seizures until she was officially diagnosed several years ago. I get the impression that she feels that because she wasn't diagnosed until more recently that those other years of suffering "do not count". I just spent 15 minutes mulling over her email and sending her a reply back, telling her that it doesn't matter how long you have had seizures or to what severity your seizures are, you just cannot compare yourself to other people who have Epilepsy and say that yours are better or worse than theirs. You just cannot think of it like that. My husband taught me that. With him having had a brain injury, we have a lot of contact with other people who have had brain injuries. Every single brain injury and how a person handles that brain injury will differ. The same is true with Epilepsy I have found.

I remember thinking, when I met my husband and learned of his TBI, how awful. This person has suffered way more than I can ever imagine. I had a hard time coming to terms with what he had gone through, even though I did not know him during that period in his life. And then one day he said that everyone has something that is their life struggle or their one thing that was a major life event for them. For him it was his TBI. It was life changing. For me, it was my Epilepsy. It too was life altering.

My Epilepsy has taken a backseat to my children. And I have to say, thank goodness for that! Another life changing event came the day we were handed our daughter in China. My third life changing event came the day that we were handed our son in Ethiopia. Those are life altering events that I want to remember.

At our monthly support group meeting I may see 5-10 people, all with seizures. I know each of their stories and I do not think of their seizure stories as being any worse or better than the next person. What I see in these people are strong people who are resilient who have dealt with what they were given. And I have met many people over the years who have also not dealt with what they were given just yet or possibly just not accepted what has happened.

I spent the first 3-4 years after diagnosis always wondering "why". Why did this happen? what did I do to cause these seizures to come on? And then one day my neurologist said, "you need to move on now...". I still often wonder why and what is causing this. I fall into the "unknown" category when it comes to what the cause of my seizures are. Last I heard 80% of cases fall into an "unknown" cause. That's a huge percentage in my mind. So are those other 80% blogging tonight somewhere, wondering why they started having seizures? I hope not. I hope they're letting their brains rest and are getting a much deserved night of sleep! Read more!

Monday, August 10, 2009

Always a person with Epilepsy

I have a dear friend who coincidentally had seizures earlier in her life. I never knew that she had them until I started having seizures. And then one day she decided it was okay to talk about it.

When she was in college she started having seizures. When she went to the neurologist he asked her if she had a history of seizures. She said "NO" and at the same time, her mother, who had accompanied her to the doctor's visit, said "YES".

My friend was shocked. She had no idea she had seizures as a young child. Her parents had never told her! Looking back now, she remembers a few incidents which were never explained to her in her youth. College brought on the "perfect storm" for her, with stress and sometimes a lack of sleep. She went on medication and her seizures became controlled.

Her seizures were held at bay for quite some time and then years later her neurologist allowed her to go off of medication. For the past 10+ years now she has been off medication and seizure-free. But somtimes I wonder... are we really ever "seizure-free" entirely?

Over these past years she has had moments that she and I both describe as "brain pain", where you have a sharp head pain. She has had times where her face appeared to droop, as if she were having a stroke. Not everything has been perfect, but she has been able to live without medication and in a somewhat "seizure-free" world.

That has all changed now, as her seizures have surfaced once more and she is now awaiting an appointment with the Epileptologist's office in Omaha. In her and my mind, it cannot come soon enough. We know she will have a consultation, and then probably be referred for an MRI and EEG testing. It has been years since she has had either. We know that the conversation will inevitably come up regarding medication or going back on medication. I think she has had enough seizure activity these past few weeks that she is ready to accept that route if that is where testing and consultation leads her.

My husband and I recently met a young man in his 30's who had a stroke about 18 months ago. You wouldn't know it, as he is strong and young and healthy. You wouldn't suspect that he was hospitalized for a long period of time, learning to walk/talk and rehab. In a conversation with him, I asked him if he was on any medication since his stroke. He is only on one and it is a cholesterol medication. He said he "fought hard" to not be on meds.

I remember when I first started medication. It was Tegretol and I was miserable. I remember dreading taking medication. I kept thinking of the medication bottles that adorned the dining room table at my grandparent's house. Who wants to take medication if they don't have to? I hesitated at taking aspirin. I would suffer through a day or two headache without taking anything just because I wanted to get through it without the aid of medication... even an aspirin.

My body was so overtaken by seizures that I finally gave in as well and have lived a life with anticonvulsants and medication changes over the years. I hope that one day I can be medication free, but in the meantime I am enjoying my "seizure-free" moments and relishing every day that goes by when I do not have to think about the fear of a seizure.

Medication is a huge topic at our monthly support group. It is a concern for everyone no matter what age the patient. Read more!

Tuesday, June 9, 2009

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!

Wednesday, May 27, 2009

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!

Sunday, February 15, 2009

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
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!