Living With Epilepsy

Living Well With Epilepsy

2011-03-13T23:00:00.000-04:00

Here is a shout out to Living Well With Epilepsy, a new blog by Jessica Kennan Smith. The blog has some great insights into the funding disparities between other conditions and epilepsy. Although just as many people die each year from epilepsy as from some other diseases, epilepsy receives a fraction of the funding of most other common conditions.

Fit2BeParents

2011-01-14T13:13:00.000-05:00

Although I haven't posted recently, it is because I haven't had any seizures in over a year! I am so grateful for that!

I did have a recent contact from a new website called Fit2beParents. This website focuses on new parents who suffer from epilepsy. It provides information on how to get through the pregnancy and how to make it through the difficulties of raising a baby while at the same time making sure you are successfully dealing with the difficulties of taking care of oneself or one's spouse. It is very unique in that it gives advice for mothers and fathers. The site is run by two people that have epilepsy and are giving their first-hand advice. I highly recomend it: Fit2beParents.co.uk

Blurred Vision

2009-11-30T11:42:00.003-05:00

I started taking a higher dose of Vimpat 300 mg twice a day this weekend. I did not seem to have any problems on Sunday, but this morning I have had a few instances where I was dizzy or had blurred vision. I am not sure if it is from the medicine, but those are some of the reported side effects. I will keep monitoring to see what happens. My Depakote is down to 250 mg twice a day. We shall see what happens.

Vimpat 200 Mg

2009-11-09T10:47:00.002-05:00

Today is my first day taking 200 Mg of Vimpat twice a day. I am being especially wary of any of the possible know side effects, such as blurred vision or dizzyness. It has been two hours since my first dose. No sign of issues yet.

Petite Mal Seizure

2009-11-06T13:32:00.002-05:00

I started getting hot while eating lunch today and had a short petite mal seizure. I quickly activated my VNS, drank some cold soda, and took off my coat. I am feeling better now. I had not taken my lunch meds yet, so I took those too.

5 Days on Vimpat

2009-10-23T15:51:00.002-04:00

I've been on the Vimpat for 5 days now. So far no side-effects or allergic reactions. Granted, this is at the lowest dosage of 50mg 2 times a day. Still, a good sign...

Vimpat - Day One

2009-10-21T19:02:00.003-04:00

I have decided, after speaking with my Dr., to try a new medication for epilepsy called Vimpat. I began taking a very low dose on Monday. Hopefully I will be able to use it in place of the Depakote that I take now. We shall see.

Another Living With Epilepsy

2009-02-18T17:21:00.002-05:00

I found another epilepsy blog today that cronicles a young child's experience with epilepsy. A pretty good read.

CURE for Epilepsy

2008-11-10T23:11:00.003-05:00

OK, I haven't been here for a while, but really needed to point out the following. If you've been over to Federal Review to read my rants and Emeriol's reasoned discourse, then you know I'm a strong conservative and consistent supporter of Republicans. But I took extra joy in Sarah Palin's potential focus on "special needs" children as Vice President - because, after all, children with epilepsy not only have special needs in education and other matters, they have needs that vary so widely, some serious education or awareness-raisin' is needed. In any case, among my other disappointments on November 4, I was sad that Mrs. Palin would not have the opportunity to bring this issue to the debate in Washington.

But guess what. A reason for hope that the Obama Administration may even have some reason for focus directly on epilepsy itself. My lovely wife pointed out this video to me because she noticed the banner behind Mr. Obama and he roasted his new Chief of Staff Rahm Emmanuel.

For several years now, I have had this logo and link at the bottom of my page on Federal Review.

Guess who founded and runs this organization? Susan Axelrod, the wife of Barack Obama's campaign manager, David Axelrod. There's some good news. And while my 8-year old has had only one seizure since June 2007, the EEG is still not settled and others, such as Federal Review's own Emeriol, continue to fight seizures. I'm pleased that someone concerned about epilepsy research will have the new President's ear. And that's some wealth redistribution I can get behind.

This graphic from the CURE site shows how the Epilepsy Lobby (if there is one) has been very ineffective. You know you have a PR problem when a much larger number of afflicted are seeing much less comparative research investment. Perhaps that's about to change.

Crossposted on FederalReview.

Brain mapping...

2008-10-30T16:17:00.002-04:00

Yesterday I did some brain mapping at the Institute. It went well, but I was pretty tired by the end. Next week I have another appointment scheduled with Dr. Dean. Hopefullly she will write me back to work part time. I am getting a bit stir-crazy. :)

No seizures today! :)

2008-10-28T20:55:00.001-04:00

I had another good day with no seizures. :)

Doing Well

2008-10-25T20:54:00.001-04:00

Nine days no seizures! :)

Another Intense Gran-Mal Seizure

2008-10-11T07:02:00.002-04:00

Scott had another intense gran-mal seizure this morning at approx. 12:45 am. Fortunately he did not fall out of bed or injure himself. This seizure lasted a bit longer than his usual tonic clonic seizures - it lasted a full 5 minutes. During the seizure, Scott let out an excruciating howl as if he were in intense pain. I swiped his VNS magnet several times both during and after the seizure. Nevertheless, Scott did stop breathing after taking several deep, jagged breaths. Swiping the magnet also did not seem to help with the recovery time as it was almost an hour before Scott could speak clearly or answer even the most simple questions. Scott has been resting peacefully since the seizure. I will have to wake him shortly to take his medications and eat breakfast. Please pray that Scott will have a peaceful, seizure-free day.

Current Depakote Level

2008-10-10T15:12:00.002-04:00

Nurse Cindy called from Dr. Dean's office a few minutes ago. She stated that Scott's Depakote level is currently 63.7. (You may recall that it needs to be between 80 and 100 to be completely effective.) Cindy also stated that they expect this level to continue to increase - especially since Scott's dosage was just increased (on 10/8/08) and that it takes 60 hours for it to increase in his system. We pray that as the level increases, Scott's seizures will subside.

Results from Thyroid Test

2008-10-10T12:04:00.003-04:00

I just heard back from Dr. Sollenberger's office. Scott's blood test showed that his thyroid levels are a little low so they are going to start him on medication today. Scott has a follow-up appointment with Dr. Sollenberger in early December.

Scott had one simple partial seizure at approx. 11:30 this morning. He was sitting at the kitchen table eating a sandwich and drinking some juice. He is in bed and is resting now. I'll continue to keep you posted.

Thanks,
Christa

Twice in One Day

2008-10-09T21:24:00.006-04:00

Scott had another gran-mal seizure at approx. 7:55 pm this evening. He was on the phone with his brother at the time. (Sorry Matt!) Just like the seizure from earlier today, this seizure did not last long - only two minutes - and it did not take Scott long to recover. Fortunately, I was able to swipe his VNS magnet so he never stopped breathing. Unfortunately, Scott hit his already sore and bruised elbow during the seizure.

Again, we're not sure what caused the seizure. (Scott ate dinner and took his medicine at 6:00 pm this evening. He also took a nap once we returned home from his doctor appointment this afternoon.)

Scott is in bed resting comfortably now. I pray that this is the last seizure he has to endure for a very long time.

Another Gran Mal Seizure

2008-10-09T16:13:00.004-04:00

Scott had another gran-mal seizure this morning at approx. 10:30. He was at his father's house at the time and was playing Civilization on his Nintendo DS. This seizure only lasted a minute or so and did not take Scott long to recover. (Thank goodness!)

I called Dr. Dean and scheduled an appointment to have Scott's blood levels checked this afternoon. I specifically want to see how much Depakote is in his system. (Dr. Dean had previously explained that you have to maintain a level of 80 - 100 for the drug to be compleetly effective.) Perhaps this will help to shed some light on this recent flurry of seizure activity.

Restful Wednesday

2008-10-08T23:05:00.001-04:00

Scott had a restful, seizure-free day today. He spoke with Dr. Dean this afternoon about his most recent seizure activity and inquired as to whether or not he should increase his Depakote Sprinkle dosage. Dr. Dean advised Scott that he should increase the medication to 375 mg twice a day. (He was taking 250 mg twice a day.) Hopefully this increase dosage is exactly what Scott needs to stay seizure-free for a very long time!

Another Seizure

2008-10-07T22:10:00.003-04:00

Scott had another gran-mal, tonic clonic seizure this evening at 6:15 pm - just as I was serving dinner. He banged his neck, back and elbows pretty badly during the seizure. He also stopped breathing even though I swiped his VNS magnet twice. In fact, he turned blue and ended up flat on his back once he stopped seizing. As much as I tried, I could not get Scott turned onto his side to clear his airway. So I called his father who lives down the road and asked him to come and help me. (Thanks Bob!)

It took Scott a fairly long time to recover from this seizure. We're not sure if this lastest round of seizures is due from sleep deprivation (Scott was not able to take a nap until 4:00 pm this afternoon) or if he just needs a bit more Depakote Sprinkle to sustain him until he takes his next dose of medicine. (Both of the seizures Scott has had this week have occurred just before he ate and took his medication.)

Scott is going to stay home tomorrow, and perhaps the rest of this week, to get plenty of rest. He is also going to contact Dr. Dean to see if he should increase his intake of Depakote Sprinkle. I'll post again tomorrow to let everyone know what Dr. Dean says.

Please continue to keep Scott in your thoughts and prayers.

Meeting with Dr. Sollenberger

2008-10-07T16:31:00.002-04:00

While in the hospital many of the tests taken showed that Scott's thyroid was overproductive. Once discharged from the hospital, Dr. Dean scheduled an appointment for Scott to meet with an endocrinologist to review these test results and to see what treatment, if any, is needed. Scott met with Dr. Sollenberger at The Salem Center this afternoon. Dr. Sollenberger told us that Scott's test results were up and down throughout both stays in the hospital. He further explained that he is not entirely sure if this is a result of the number of seizures Scott endured or if Scott truly has hyperthyroidism. But Dr. Sollenberger did point out that hyperthyroidism is not common in men and especially not in those whose family have no history of the disease. (As far as we know, no one in Scott's family has ever been disgnosed with hyperthyroidism.) Based on the previous test results, Dr. Sollenberger decided to order a blood test to get a current reading of Scott's triiodothyronine (T3) and thyroxine (T4) thyroid hormone levels. He stated that if he found an abnormality in these results then we would start Scott on medication. He also explained that this medication would not counteract with Scott's AEDs. We expect to hear the results from the blood test within the next day or two. I'll update everyone once we hear back from Dr. Sollenberger's office.

Another Gran Mal Seizure

2008-10-06T21:30:00.000-04:00

Scott has a gran-mal seizure this morning at approx. 8:30 - just as we were getting ready to leave for work. He had not yet taken his morning medication as we had planned to stop and grab a biscuit before heading in to the office. Not sure if that had anything to do with the cause of the seizure. (He usually takes his morning medication between 8:30 and 9:00.)

Thankfully Scott did not injure himself; however, he does have the usual aches and pains (i.e. headache, neck pain and body aches). He has rested for most of the day and is hoping to return to work tomorrow morning.

Back to Work

2008-10-02T22:36:00.001-04:00

Scott spoke with Dr. Dean today about returning to work part-time. She has agreed that he could return for 4 hours a day and suggested that he start back tomorrow. Dr. Dean explained that she wanted to ensure that Scott had plenty of time to rest over the weekend - just in case he is really tired after working 4 hours tomorrow. She has also scheduled a follow-up visit with Scott for tomorrow afternoon. Hopefully he won't be too tired after work and the appointment!

Starting into week 2!

2008-09-30T12:27:00.002-04:00

I am now a day and a half into week 2 being home from the hospital. Unfortunately, my strength is still not up to full, so I have been taking morning or afternoon naps to compensate. Hopefully it won't take long to get back to the point where I can make it through the day without extra rest.

7 Days

2008-09-26T12:25:00.001-04:00

I have now made it seven days since the last seizure. Great news! Hopefully the rest I am getting at home is helping.

Brain Mapping

2008-09-24T12:20:00.002-04:00

I went in for an appointment with Dr. Robeson today. We did not get to the brain mapping portion of the appointment due to lack of time, so it has been re-scheduled for October.

Still no seizures. Crossing my fingers.

Another Great Day

2008-09-22T19:49:00.006-04:00

Scott had another restful, seizure-free day today. He continues to take a mid-morning and mid-afternoon nap but seems to be more like himself again for which I am very grateful!

The stress management appointment went well today. We discussed stress management in general, identified stress relievers for both Scott and myself, and reviewed a breathing technique to help reduce stress. Scott and I are going to try to put some things in place to help reduce the stress that the recent events have caused.

Scott has an appointment Wednesday morning with Dr. Robeson for the brain mapping session. I'll keep you updated and let you know how that appointment goes as well.

Thanks again everyone!
Christa

Stress Management

2008-09-21T21:05:00.003-04:00

Dr. Dean just called. She wanted to let us know that Scott and I have an appointment to meet with Jacqueline Walker at the Epilepsy Institute to discuss stress management and review some breathing techniques. Dr. Dean feels that this is an essential part of Scott's treatment - especially after the stress endured from the past two weeks.

Seizure-Free for the Second Day

2008-09-21T19:35:00.001-04:00

Scott has remained seizure-free again today. We are very grateful to have had two straight days without seizures. Scott continues to rest as he remains a bit tired. That is to be expected after being in the hospital for nearly two weeks and from suffering from numerous seizures throughout the 2-week period.

Thanks to everyone for your many emails, phone calls and words of encouragement!
Christa

Back Home... FINALLY

2008-09-20T22:30:00.001-04:00

Dr. Dean finally arrived at the hospital at 8:00 pm this evening to release Scott. After an hour of processing the necessary paperwork and getting another dose of Depacon via IV, we were on our way home. (YEAH!!)

Dr. Dean prescribed Depakote Sprinkle (125 mg) capsules for Scott. He will be taking 2 capsules in the morning and 2 in the evening. Scott will also continue to take Keppra - although on a slightly different schedule. He will now take 1125 mg in the morning and evening as opposed to 750 mg three times a day.

Please pray that the Depakote Sprinkle and the Keppra are the correct meds, that the dosages prescribed are just the right amount and that Scott's increased seizure activity will finally come to an end.

Going Home and the Removal of Lyrica

2008-09-20T13:38:00.003-04:00

I spoke with Dr. Dean a little while ago. I explained that the nurses here are terrified when Scott has a seizure and that they really aren't helpful to me or Scott. I told Dr. Dean that I thought it would be best to let Scott go home. I even explained that we would bring Scott in each day for blood work if she wanted.

I also told Dr. Dean that as soon as Scott received his Keppra and Lyrica this morning he again got very tired and started having some small seizures right after he laid down to rest. I told Dr. Dean that based on my observations I believe that Scott should be removed from Lyrica.

Dr. Dean agreed on both counts. So we're waiting on her to come up here so Scott can go home. Before releasing him, she wants to work with us to develop a plan. We are both of the opinion that the Depacon is working. At least he seems to be calm and able to rest once he's had it. Of course, it's through an IV so we need to figure out the correct equivalent of Depakote - the oral version.

Hopefully if we remove the Lyrica and get the correct amount of Depakote Scott won't suffer any more seizures.

We are going to re-schedule the brain mapping session for Scott. He's reacted oddly to some situations and we need to figure out if it's due to the frontal area of his brain where he had the growth removed. That will better help us develop a plan for dealing with Scott's epilepsy and the treatment of it. We also want to discuss our options with the nerosurgeon after the mapping session. He previously stated that scar tissue is "very tricky". Maybe we'll have some options once we better understand how it's affecting Scott. I'll continue to post here as I learn more.

Thanks again for your love, encouragement and support!
Christa

A Good Morning Thus Far

2008-09-20T09:15:00.001-04:00

Scott has had a very good morning thus far. He has eaten breakfast, has taken TWO walks around the 9th floor here at the hospital and is anxious to speak with Dr. Dean about going home today. Keep your fingers crossed that Scott will get his wish!

One Rough Friday Evening

2008-09-19T22:45:00.003-04:00

Scott had a very rough time in the hospital this evening. He had a total of 3 gran-mal seizures and at least 15 simple partial seizures:

7:00 pm - 8:45 pm - 10 Simple Partial Seizures
8:45 pm - Gran-mal Seizure
9:00 pm - 10:00 pm - 5 Simple Partial Seizures
10:10 pm - Gran-mal Seizure
10:20 pm - Gran-mal Seizure

Each seizure only lasted a few minutes but the number of seizures Scott endured over the very short time frame is quite disturbing.

Update

2008-09-19T14:00:00.000-04:00

I just spoke with Dr. Dean. In light of Scott's recent seizure activity, she is going to start him back on a low dose of Depacon (125 mg) via IV. I explained Scott's lack of rest this morning and told Dr. Dean about how his eyes continued to move - even though his eyelids were closed. She explained that this was due to seizure activity. Hopefully this low dose of Depacon will be the answer... only time will tell. Needless to say, Scott will not be returning home this evening. Please continue to keep him in your thoughts and prayers.

Thanks everyone!
Christa

And Another Gran Mal Seizure Just Before Lunch

2008-09-19T12:10:00.006-04:00

Scott had a gran mal seizure at 11:55 am this morning. He had been trying to rest ever since breakfast this morning. But it was obvious from watching him that he was not resting well. His eyes, while closed, continuously roamed as though he were watching someone walk back and forth across the room - even though the only person in the room (besides Scott of course!) was me and I was sitting right beside of his bed. Right before the seizure Scott looked at me and told me that he was having very strange dreams about the end of the world. I teasingly asked if he was dreaming about Stars Wars again... at first he said no but then he stated that there was a bit of Star Wars in his dreams.

After the seizure, Hope, Scott's nurse today, gave him a shot of Ativan. Scott is resting at the moment and his eyes are no longer roaming. While Scott did not injure himself during the seizure, I sincerely hope that he did not injure his remaining IV site. After his first seizure yesterday, one of his IVs had to be removed because his arm had begun to swell and was very red. I know hoe much Scott hates being stuck with a needle and sincerely pray that this remianing IV will not need to be replaced.

I'm anxiously awaiting Dr. Dean's visit today. I want to speak to her about Scott's meds and get her thoughts on this recent flurry of seizure activity. Perhaps we made a mistake taking him off the Depakote. Or perhaps it's the Lyrica causing the seizures. I'm not sure how to tell but know that we must do something to help Scott. I'll continue to keep you updated. As always, thank you for your continue support and prayers.

Christa

Another Gran Mal Before Turning In for the Evening

2008-09-18T22:10:00.002-04:00

Scott had another gran mal this evening at 9:35 - just before turning in for the night. He was watching Good Will Hunting at the time of the seizure. As with the previous seizure, this one only lasted a few minutes. The nurse gave Scott a shot of Ativan. He is resting now and will, hopefully, have a good night's sleep.

One Step Back?

2008-09-18T16:04:00.002-04:00

Scott had a gran mal seizure at 3:25 this afternoon. The seizure only lasted 2 minutes or so. Scott is resting comfortably now.

We're not yet sure of what this will mean for his proposed return home tomorrow. Once we speak with Dr. Dean I will update everyone.

Simple Partial Seizure

2008-09-18T14:40:00.001-04:00

Scott complained of having a simple partial seizure at 2:37 pm today. I immediately swiped his VNS magnet and so far everything seems ok.

Homeward Bound...

2008-09-18T13:01:00.002-04:00

Scott was able to get a very good night's sleep last night. He has been up since breakfast this morning and seems more like himself today. Dr. Dean just dropped by to check in on him. She told Scott that she was happy with his progress and wanted him to start walking around today to get his strength back. She has also taken him completely off of Depacon. (Today is his first day without it.) Dr. Dean stated that if Scott continues to do well today, she may let him go home tomorrow. (YIPEE!!) Hopefully tomorrow at this time I will be posting to let everyone know that we are on our way home.

Another Eventful Night But Still Seizure-Free

2008-09-17T19:18:00.004-04:00

Scott had another eventful night last night but remains seizure-free. He has been quite tired today and has slept for most of the day. He is eating well though and drinking plenty of fluids... and dreaming of the day he can say goodbye to the hospital staff and return home to play with Otto and Katze.

An Eventful but Seizure-Free Night

2008-09-16T19:34:00.005-04:00

Scott had an eventful but seizure-free night at the hospital last night. The poor thing has been poked and prodded today. He is on oxygen, has two IVs - one for fluids and one for meds, is hooked up to a heart monitor, and was just hooked up for a sleep EEG. Dr. Dean is continuing to reduce his Depakote ER intake. (While here in the hospital, Dr. Dean is giving Scott Depacon instead of Depakote ER.) Hopefully he can get some much needed rest this evening. I'll continue to post updates on his progress.

Thanks again for all of the phone calls, emails, visits and meals. It is wonderful to have such loving and supportive friends and family. We love and thank you all!

Christa

Back to the Hospital...

2008-09-15T19:10:00.002-04:00

Scott and I have just returned from Dr. Dean's office. He was unable to meet with Dr. Robeson for the "mapping" session because he was so tired from the three seizures. However, Dr. Dean decided to have another EEG performed. The procedure ran for a little over two hours and Dr. Dean stated that it looked better than the one taken last week.

While at Dr. Dean's office this afternoon, Scott had several simple partial seizures. Based on the fact that Scott has had 7 seizures since being released from the hospital last Friday, Dr. Dean has decided to re-admit Scott into the hospital. She has also decided to take Scott off of Depakote ER.

So, we'll be heading back to hospital shortly. Please say a prayer that the removal of the Depakote ER will halt his seizures and that Scott can return home, seizure-free, soon.

Three in a Row....

2008-09-15T13:23:00.003-04:00

Scott had another three gran mal seizures this morning. One at 4:45 am, another at 7:45 am and a third one at 8:55 am. He fell out of bed during the second seizure and fell onto the marble floor in our bathroom during the third seizure. His neck and back are quite sore.

We head to Dr. Dean's office in a few minutes. Hopefully eliminating one of his AEDs will reduce, if not completely eliminate, his seizures. I'll post another update once we return from Dr. Dean's office.

Still More Seizures

2008-09-14T21:14:00.001-04:00

Scott had another seizure at 1:00 am this morning. He also had several simple partial seizures this evening while eating dinner. Scott has continued to rest for most of the day. We are anxiously awaiting the meeting with Dr. Dean and are extremely hopeful that the elimination of one AED will be the answer we are praying for.

Another Day... Another Seizure

2008-09-13T13:09:00.010-04:00

Scott had another gran mal (or tonic-clonic) seizure today just before 12:00 pm. Fortunately, he was resting in bed at the time of the seizure and did not get hurt. Perhaps the increase in Depakote ER or the new medication, Lyrica, is the cause of this seizure. Hopefully, we will know something more certain when we meet with Dr. Dean on Monday to discuss Scott's drug regimine. No one, including Dr. Dean, wants Scott to take 3 AEDs so the meeting on Monday will provide Scott and Dr. Dean with an opportunity to discuss and determine which medications Scott will continue to take and which one he will stop taking. Please say a prayer that Scott and Dr. Dean make the right decision for his care.

At home... but not quite seizure-free

2008-09-12T21:58:00.001-04:00

We arrived home this evening around 6:30 pm. It was so nice to see the huge smile on Scott's face as he played with Otto and Katze, our dog and cat. Unfortunately, just before turning in for the night, Scott had a petit-mal seizure (also known as an Absence seizure) that lasted for only a few seconds. We're not sure of what brought the seizure on... perhaps the excitement of returning home or not enough rest today. Anyway, I am sooo grateful that Scott is in bed now and seems to be resting comfortably.

Getting out of Dodge

2008-09-12T16:14:00.002-04:00

My Dr. just stopped by the room and is releasing me from the hospital today. I am pretty excited to be going home. :)

Ready... and Waiting....

2008-09-12T11:57:00.004-04:00

Scott had another restful night here at the hospital - despite the sleep study monitor. He has eaten breakfast and lunch, has completely dressed and is now sitting and waiting, as patiently as he can, to be released. Hopefully it won't be too much longer now. We'll continue to keep you posted.

As always, thank you for your love and support!
Christa

Update!

2008-09-11T20:15:00.004-04:00

Still here in the hospital. Dr. Dean is going to start me on a new drug, Lyrica, tonight. Hopefully that works and they will let me out tommorow. :)

As for the PET scan, Dr. Dean reveiewed it and believes that the seizure activitiy is still eminating from the scar tissue left over from my brain surgery 15 years ago. She is going to review these results with the neurosurgeon that implanted my VNS to see what, if anything, can be done.

Dr. Dean is also performing a sleep study on me tonight to see how well I am sleeping. Hopefully I will know more tomorrow.

So far so good....

2008-09-11T10:03:00.004-04:00

Scott had a restful, seizure-free night. He ate a full breakfast of french toast and sausage earlier this morning and is resting again now. We are still awaiting the results of the PET scan. I'll continue to keep everyone posted as I hear more.

Please also accept our sincerest thanks for all of your calls, emails, visits and especially the prayers that have been lifted up for Scott's speedy recovery. We are truly blessed to have such loving friends and family.

Christa

Another Seizure

2008-09-10T11:25:00.002-04:00

Scott just had another tonic-clonic seizure a few minutes ago. It happened just as the telephone was ringing. The seizure only lasted two minutes and while Scott did take several jagged breaths, he did not stop breathing. Scott's nurse, Tracey, just gave him a shot of Ativan and he is resting now.

First Night in Hospital

2008-09-10T08:59:00.000-04:00

Scott was able to rest pretty well last night even with the usual headaches of being hospitalized. Dr. Dean came by around midnight to check on him. Luckily, he was resting peacefully at that time. However, I quickly explained Scott's frustration at being woken up every few minutes and reiterated that one purpose of his hospitalization is to ensure that Scott is able to rest. Dr. Dean agreed and immediately instructed the staff to NOT disturb Scott for the rest of the evening. While the nurses did continue to check on him each hour, they never woke him.

While here last evening/this morning, Dr. Dean explained that Scott's EEG was normal. She also stated that she wanted him to have a PET scan today. I inquired as to whether or not Scott should have a sleep study - something we have discussed in the past - however, Dr. Dean stated that she first wanted to see what, if anything, the PET scan showed. When asked, Dr. Dean was not able to indicate how long Scott may be staying in the hospital. Keep your fingers crossed that Scott's stay will be short. I know that he longs to return home soon.

The staff arrived to take Scott down for his PET scan at 7:00 am this morning. He was a real trooper - thanking each and every one of them for their help. It is my sincere hope and prayer that the PET scan will reveal something - anything - that may enlighten us on the recent flury of seizure activity and allow us to start on a new course of action to help reduce it. I'll continue to update you as I hear more.

Christa

Severe Seizure sends Scott to the Hospital

2008-09-09T13:00:00.008-04:00

Scott had a severe tonic-clonic seizure at 4:00 this morning. This seizure included many "firsts" which I have noted below:

1) The seizure lasted a full 45 minutes. This is very unusual as Scott's seizures usually last fewer than 5 minutes.

2) During the seizure, Scott let out an excruciating howl as if he were in intense pain. In the many seizures I have witnessed, I have never hear Scott make this sound.

3) Scott's legs were rigid throughout the seizure. I found this to be unusual because Scott's legs are usually bent as his usual tendancy is to collapse just before the clonic phase of the seizure begins.

4) Once the clonic phase of the seizure ended, Scott took several deep, jagged breaths and stopped breathing - which is usual for him. What happened next, however, is unusual. Usually Scott returns to normal breathing. However, this morning he again took several deep, jagged breaths.

5) It took Scott an hour after the seizure ended to recover and answer even the simplest of questions - even though I swiped his VNS magnet 4 different times over the course of 1 hour and 45 minutes. This is quite unusual as Scott normally recovers quickly and can answer very simple questions after only a few minutes.

We are not sure what triggered this seizure. Scott had eaten well the day before and had taken his medication on time. He did not seem stressed, worried or upset about anything. He was a bit tired last night and went to bed at 10:30 pm but he was sleeping peacefully when I turned in at 11:00 pm. Perhaps Scott is still not sleeping well or getting the much needed rest he needs. Or maybe it was caused by the Depakote ER he started taking 3 months ago. Or maybe still the seizure was the result of the Lamictal leaving his system. (Scott had been reducing his Lamictal intake over the past 2-1/2 months and completely stopped taking Lamictal approx. 2 weeks ago.)

I called The Epilepsy Institute at 8:00 am this morning and requested that Scott be seen. We arrived there shortly before 10:00 am so that Scott could have an EEG performed. Nurse Cindy also took several vials of blood to see what they could tell us. While we were in the office, Dr. Dean called from the hospital where she was making her rounds and stated that she wanted Scott admitted to the hospital for observation and further testing. At this time, we believe that Scott will remain in the hospital until the end of the week. I'll continue to post updates on his condition.

As always, thank you for your love and support.
Christa

Seizure at night

2008-08-26T21:34:00.001-04:00

I had a seizure right when going to bed. I had taken my meds, so only explination might be that I was simply very tired.

Back to back seizures

2008-08-11T09:36:00.001-04:00

One seizure at 12:30 AM. One seizure at 10:00 AM

J.B. Symes, DVM. v. Epilepsy, et. al. (part 3)

2008-06-19T19:11:00.005-04:00

Part 3.

So I finish school ok, and then get a job about midway between Charlotte and Ashville. Several months after starting work there, I began having some small-generalized seizures that merely stopped my concentration for split seconds. A MRI and EEG showed nothing that would indicate that the growth I had removed had returned. So my Dr. changed my medication from Tegretol to Lamictal. This cleared things up.

Application of Symes' theory: Continued food intolerance + new allergens = compromised immune system & seizures. An analogy used in one of his papers is that the body can handle a tremendous amount of stress from viruses, toxins, allergens, etc. But it is limited. So if your immune system is a glass of water, the food intolerances count for about 3/4 of a glass. If you start slowly adding ice cubes (representing other allergens such as pollen or dander), the water will spill over.

The Lamictal was taking care of the seizures ok - I eventually took a new job in Winston-Salem. I moved there and did not have any additional seizures... until I moved again. This time we got a dog and then a few months later moved into a house further out in the county and we got a cat to keep our dog company. I was still OK but then began having the generalized seizures that stopped my concentration for mere fractions of a second. I could still function pretty well, but my short-term memory was declining. I tried another medication - Trileptal, but this did not help. I added Keppra to my Lamictal, and this stopped the generalized seizures.

Application of Symes' theory: Food intolerances + new allergens (dog, cat, new house, different vegitation) = reduced imune system & seizures.

So I'm doing well on the Lamictal and Keppra combo for a while, and then both Christa and I start having allergy problems. Soon after that, I have a full blown tonic-clonic seizure. I then changed the dosage levels of the medication and things improved briefly. From then on, I began having seizures about every 2 - 6 months. In addition, due to the allergies, we bought a new vacuum - if I use it at least once a week, I don't suffer from classic allergy symptoms anymore.

Application of Symes' theory: Although the tonic-clonic seizures are mildly controlled, the food intolerance and allergens are still going to build up and seizures will break through.

Unable to truly control the seizures, I decide to get a VNS. Although I was able to go more than 8 months without a seizure, late this spring they came back. So I am back to trying different meds in hopes that they can stop the seizures.

Application of Symes' theory: Allergens built up during the spring, and finlly overwhelmed the system again. Changing meds may help, but won't stop the seizures from breaking through again without a change to the environment or diet.

Part 4 Tomorrow...

J.B. Symes, DVM. v. Epilepsy, et. al. (part 2)

2008-06-18T19:19:00.002-04:00

This is the beginning of an attempt to match up my seizure symptoms to the theories of J.B. Symes, DVM with regards to epilepsy. I am using the simplified theory, plus various supporting material from his various texts or links.

My first seizures occurred when I was very young - they were diagnosed as being febrile seizures - ones caused by high fever.

The next time I had a seizure I was twelve. It was a tonic-clonic seizure that happened in the middle of the day on a hot afternoon on the back porch of a friend's house. Doctors were unable to determine a cause... but my father has suggested that it could be due to a bicycle accident where I crashed and banged my head earlier that year. Head trauma is definitely a known cause of epilepsy.

If one were to apply Symes' theory to the onset of seizures, the diagnosis might go like this: Since birth I had slowly built up a level of toxins and allergens from wheat gluten and milk. After moving to south Georgia, additional airborne allergens may have accumulated in my system to the point where my immune system could no longer tolerate the allergens and caused a seizure. Perhaps the specific allergen was dog dander - my friend had two dogs.

I had several more seizures after the first one and was then put on a AED - pehnobarbitol - which reduced my seizures tremendously, but the mind-numbing side effects were quite bad. After several years in Georgia, my family moved to North Carolina. Soon after moving, I began having more seizures. My Dr. had me switch medications which reduced my seizures long enough so that I was able to get a driver's licence and successfully complete high-school.

Application of Symes' theory: Moving to a new location introduced multiple new allergens (dog, cat, construction dust, different trees and plants) to the body, which, when added to the food intolerance, overwhelmed the immune system and allow seizures to break through.

After high-school I moved to Boone, to attend university at Appalachian State (yes, the small school that beat Michigan). Not long after attending, I began to have seizures again. Possible causes - social stresses, lack of sleep, ???. In any case, with the help of friends, family, and gracious professors, I managed to make it through freshman year.

Application of Symes' theory: New allergens + food intolerance = breakthrough seizures.

Back home for the summer - I tried every available AED on the market at that time - nothing worked. So I had an MRI done. It showed that I had a tumor-like growth in my head. My neurologist said that this was most likely the cause of the seizures and that it should be removed. I had my skull sawed open and the majority of the growth was extracted - some was unable to be removed as it was deeper/entwined in the brain. After having the operation, my medication (Tegretol) was able to control my seizures again.

Here is where it gets a bit more difficult to apply the theories. If the cause of the seizures was the growth, would that preclude the theory of the food intolerance plus allergens? Perhaps not. Symes' cites research showing that reduced immune systems can have an impact on malignant growths and cell embedded viruses. Or more likely, the healthy immune system was able to handle the extra stress from the growth in my early years, but as my immune system continued to be compromised by the food and allergens, it simply couldn't handle the stress any longer.

Tomorrow I will continue the analysis.

J.B. Symes, DVM. v. Epilepsy, et. al. (part 1)

2008-06-17T19:03:00.007-04:00

J.B. Symes, DVM (aka DogTorJ), sent me a link to his website where he provides the details to his research into food intolerance and how they affect animals and humans. His examination and research on the topic is immense. I encourage anyone interested to check it out on his website.

For the purpose of the next few posts, I am going to simplify Symes' massive thesis into one brief sentence: Food intolerance and allergens damage cells and reduce the effectiveness of immune systems to deal with tissue bound viruses and cell mutations.

So how does that apply to epilepsy? Epilepsy is not a disease, but a condition where a person experiences re-occurring seizures. Seizures themselves are not a disease, but a response by the body to some stress. The re-occurring stress to the body/brain is what "causes" epilepsy.

The most common way that doctors combat seizures is simply to use drugs which inhibit the bodily response to the stress - hence the mind-numbing side effect of many of the drugs. In cases where the stressor is a tumor or brain damage, one way to stop the repeated stress on the brain is to surgically remove the offending tumor or brain area. In cases where the doctors cannot determine from where the seizure-causing stress is emanating, they call it Idiopathic Epilepsy.

Now, consider that doctors are frequently faced with having to treat Idiopathic Epilepsy with some selection of the available anti-epileptic-drugs (AEDs). If you read the white-papers on nearly all of these medications, one thing stands out: they all say that the doctors/manufactures are not clear on the details of how the medication helps stop seizures. Wow... talk about a tough job; trying to treat some unknown cause with unknown solutions!

Here is where Symes research comes in. He painstakingly pieces together historical and medical research to come up with a comprehensive theory on what the stressor is that causes a number of conditions, including idiopathic epilepsy. (It is like M. Night. Shyamalan's "Sixth Sense" when at the end of the movie is all becomes clear and you realize that the protagonist is a ghost.)

What I am going to do over the next few posts is apply theories laid out by Symes to my own medical history and see if his theories match my symptoms/seizures. To be clear, I am applying his theories - this is not a diagnosis by Symes.

No seizures in 13 days...

2008-06-16T07:26:00.001-04:00

Great news, I have made it a whole 13 days now without any seizures! The addition of the Depakote may be the trick. Hard to say as I also had my VNS settings adjusted. We shall see how it goes...

(I added one of Blogger's new features - a poll to see what percentage of the readers have epilepsy. Please participate. I have also moved the subscribe buttons to the top. Feel free to get this in your reader or email.)

New Drugs

2008-06-03T21:45:00.003-04:00

I visited Dr. Dean today. She showed Christa and I a detailed analysis of the EEG report. It appears that my brain-wave patters have changed some since the last time I had an EEG. Some noticeable things were that the flashing lights produced some seizure activity in certain HZ ranges (no more Pokemon Videos for me!) I have not had seizure activity during this part of the test before. Another interesting development was that there are some intense sections of Polly-Spike-Waves (bad seizure activity) during certain sleep portions. Doc says that the seizures I am having are related to sleep deprivation caused by my mind not fully entering certain stages of sleep - thereby increasing the Polly-Spike-Wave activity even during awake and sleep.

So... she has recommended that I try adding Depakote ER to my drug regimen and remove Lamictal. I plan to start that this week. It will take several more weeks before I have made the transition. I so hope that this will work!

Getting Old Quick

2008-06-03T12:32:00.002-04:00

Another seizure this morning. Not so fun. At least I did not bang any body parts too hard. I'll be going back to see Dr. Dean later today. Maybe she will have some other ideas on treatments. Will keep you all updated.

Yet another @#$% Seizure

2008-05-28T17:05:00.002-04:00

I stayed out of work today because I was tired from my seizure yesterday. Good thing too. I was at my parents house and had a tonic-clonic seizure while laying on their couch. Didn't get hurt though, so that was good. Christa called the Dr. and I will be going to get an E.E.G. tomorrow morning.

Yet Another Seizure

2008-05-27T20:39:00.006-04:00

Scott had a tonic-clonic seizure at approx. 5:30 this evening while we were driving home from work. He did stop breathing for a moment. Unfortunately, I could not get to the magnet in time to swipe his VNS. The seat belt burned his shoulder a bit but he does not appear to have any other injuries. (Tomorrow may be a bit more telling as I imagine he will be quite sore from the seat belt.) Scott is a bit tired and complained of being hot and having a headache afterwards. He is resting comfortably now.

We're not sure if the headache or the heat attributed to Scott's seizure. But we'll keep a check on these conditions just in case. I'll continue to keep everyone updated.

Thanks again for your thoughts and prayers,
Christa

Seizure

2008-05-20T22:28:00.001-04:00

I had a seizure tonight while at my Doctor's office. It had been 8 months since my last one. I was fortunate that Christa was able to catch me before I fell onto the concrete floor - so all I suffered was a slightly banged up elbow and a headache. Christa said that I did not stop breathing this time, so that is a great improvement on seizures past. I credit it to the VNS. While I was there I had them up my current on my VNS... perhaps that will help me go another 8 months with no seizures. :)

My current VNS Settings:
Current: 1.5 mAmps
Frequency: 20 hz
Pulse Width: 130
On Time: 21
Off time: 0.8

9 Months

2008-05-15T13:37:00.003-04:00

It has been nearly nine months since my last seizure. SO HAPPY AM I!!!

I don't have any clear-cut answer as to why I haven't had any... good weather, low stress, VNS... who knows. Probably a combination of factors...

Kids Speak Up! on Epilepsy

2008-03-27T18:09:00.001-04:00

From the Epilepsy Foundation:

50 Scholarships Awarded for Kids Speak Up! 2008
Kids Speak Up! is a national conference for youth leaders with epilepsy. It provides 7-16 year olds with a unique opportunity to educate elected officials and staff about the disease. It’s also the first chance for many participants to speak out and meet other youth with epilepsy.

Chris Ames, a 10-year-old participant, was typical of many at last year’s event. He strode confidently to the stage on the first night of the conference and said, “I’m not ashamed to have epilepsy. I don’t care what people say; I just keep going. I’m a one-man army!”

Fifty families will receive scholarships to attend Kids Speak Up! 2008. Scholarships provide funding for one parent and one child’s travel, lodging and other expenses. They are sponsored through an educational grant from Abbott Laboratories.

Kids Speak Up! will be held March 30 - April 1, 2008 in Washington, DC.

Please contact Joseph LaMountain at jlamountain@efa.org if you have any questions regarding the event.

Three Cups of Tea

2008-03-04T13:26:00.003-05:00

Very cool article. Super brief summary. Guy's sister dies from epilepsy. He decides to honor her by taking her necklace to the top of K2. Nearly dies. Saved by some locals. Inspired to build schools for children. The article is great. I'm planning on reading his book: Three Cups of Tea

Over Six Months

2008-03-03T12:57:00.002-05:00

It has been over six months now since my last seizure. A very nice feeling indeed... Now, if I can just make it... say... 50 more years. Wish me luck!

UCB & Epilepsy Advocate Scholarship

2008-02-28T18:57:00.003-05:00

UCB and EpilepsyAdvocate have a scholarship program as well. Fortunately, this one has a deadline of May 1. If you are interested, check out their scholarship page.

The Epilepsy Advocate website has a lot of other great information on epilepsy as well.

Kudos to UCB for their research in epilepsy medications and their support for people living with epilepsy.

Epilepsy Scholarship

2008-02-25T22:46:00.003-05:00

I just got this notice from Pfizer regarding their Epilepsy Scholarship. The applications have to be in by March 1st. So if you are interested, click fast!

Kudos to Pfizer for providing these scholarships to deserving students and for creating some great meds to help people with epilepsy.

Hope...

2008-02-07T22:43:00.000-05:00

Long time no post...

2008-01-13T17:05:00.000-05:00

It was quite an eventful Christmas for my family and I. We traveled to Finland to visit our friends over the Christmas and New Years holiday. It was a spendid trip and we were able to tour around the beautiful country for nearly 2 weeks.

One of our worries going into the trip was that the stress from jet-lag might trigger seizures. So before leaving, we asked Dr. Dean (Epilepsy Foundation of NC) her recomendation on the best way to deal with the change in schedule. She told me to keep the same medication schedule regardless of the local time. Being that Finland is 7 hours ahead of the US East Coast, it was a bit difficult, but not impossible. Thankfully it worked and I did not have a single seizure on the trip!

Merry Christmas!!!

2007-12-25T00:05:00.000-05:00

I wish you all a very wonderful Christmas!!!

Epilepsy Shot

2007-11-06T13:43:00.001-05:00

I got my yearly flu shot today... if only they had a yearly epilepsy shot... one can hope? right?

PET Analysis Report

2007-10-11T17:51:00.000-04:00

I finally got a copy of the report from my P.E.T. scan. The good Dr.s at WFUBMC provided me with this:

FINDINGS:
There is evidence of prior right frontal craniotomy. An area of encephalomalacia is identified deep into the craniotomy site. No metabolic activity is identified in the region of the encephalomalacia. The remainder of the brain demonstrates normal and symmetric activity. No addiional areas of hypo or hypermetabolism.
**************CONCLUSION**********************
1. Status post right frontal craniotomy with underlying encephalomalacia.
2. Otherwise normal and symetric metabolic activity within the cerebral and cerebellar hemisphers bilaterally.
**********************************************

Wow, so that is a lot of stuff. So I looked up all the funky M.D. words (and provided links for your pleasure) and determined that:
1. I have had brain surgery before and there is scar tissue.
2. My brain does not have any crazy activity with regards to blood flow.
3. Both sides of my brain are functioning in the same way.
4. No tumors detected.
5. I still have idiopathic epilepsy - that is: the M.D.s don't have a clue as to why I am having seizures.

Blogger V. Squirrels

2007-10-09T12:23:00.000-04:00

Evidentlly I'm not the only Epilepsy blogger that took time to blog about their squirrel issues. Sicilianna, a My.Epilepsy.Com blogger, writes this:

I woke up at 4:30am to the sound of some sort of critter making noise in the ceiling. Last February we captured a family of flying squirrels that had nested in our attic. I fear some little cousins may have heard there was a vacancy and taken up residence. Once I realized the rolling of acorns and scurrying of tiny feet was not going to stop any time soon, I gave up on falling back to sleep and decided to get out of bed.

Check out her blog: Sicilianna's blog : Always move forward! My Life (So Far!) With Epilepsy.

Off Topic: Blogger V. Squirrels

2007-10-09T12:13:00.000-04:00

I arrived home yesterday to the unmistakable sound of a Squirrel in the wall. Yes, a squirrel stuck in an interior wall of the house - scratching and clawing at the wall in a vain effort to climb the Sheetrock. Why unmistakable? Because the same thing happened last year - one of the neighborhood squirrels managed to make his way into the attic and then, due to an odd architectural feature of the house, managed to slip down one of the gaps into the wall.

So I proceeded to listen carefully against the wall, make a guess as to which section of the wall in which the squirrel was trapped, then cut a hole in the wall. Once the hole was opened, Ryan and I gave fair warning to Christa that she may want to exit the room for a moment while we extracted the vicious beast. After a few minutes of chasing the squirrel around the room, I managed to bag him and then let him out the front door.

I was pleased with the work until I went upstairs to cover the hole and heard a second squirrel scratching away in a different area of the wall. Ug. Same routine as before, except this extraction required two holes as my first guess was wrong. After the beast was released, I covered up the holes and called it a night.

This morning I awoke to the dreaded sound of scratching. One of the little beasts was trapped again... this time in yet another section of wall. I did not have time to get him out this AM, so he is still there. Hopefully I can get him out tonight...

Brain Radiator

2007-10-08T13:46:00.000-04:00

I'm not sure if you will see any clinical trials on this little gizmo, but it is still pretty cool. The idea is that by cooling the brain, you can reduce seizures. I found this at the New Scientist Invention Blog.

In severe epileptic fits, over-excited brain cells fire at such a rate they can raise the brain's temperature in that area. This causes more nerves to fire in a feedback mechanism that makes the fit even worse. One way of preventing such escalating fits is to cool the area of the brain that is susceptible.

So Takashi Saito and colleagues at Yamaguchi University in Japan have developed a heat pipe that is surgically implanted into the affected region of the brain and then connected to a heat sink on the outside of the skull. This device carries heat away from the affected area, keeping it cool and reducing the chances of severe epileptic fits in future.

Here is an image from the patent application:

Get some sleep

2007-10-08T09:54:00.000-04:00

This article I found on Epilepsy.Com contains some interesting info on sleep & epilepsy. Check it out.

Off Topic: Excuses To Miss Work

2007-09-27T12:15:00.000-04:00

As if I didn't have enough to do... I started yet another blog. Excuses to Miss Work. My hope is that this might actually be useful to someone. ;) As opposed to my other blogs with topics such as: an obscure furniture maker from the Victorian era, my own ramblings about epilepsy, random philosophical quotes, family vacations to Oahu, family vacation to Finland, and contributing to a blog dedicated to solving the worlds problems "one beer at a time".

PET....

2007-09-26T18:04:00.000-04:00

I'm still awaiting the report from Baptist Hospital regarding my PET scan. I'll probably call tommorow to find out what is taking them so long.

PET Scan Pics

2007-09-21T10:37:00.000-04:00

Here are a selection of my 147 PET scan images that they put on a CD for me. I can't really tell much from them... so I will have to wait for a Dr. to analyze them for me.

Epilepsy Awareness Day

2007-09-19T16:44:00.000-04:00

The local epilepsy awareness group with which I participate, NC EASE (North Carolina Epilepsy: Awarness Support Education) has organized an Epilepsy Awareness Day in November:

NC EASE and the Epilepsy Institute of North Carolina invite you to join us for our first annual Epilepsy Awareness Day.

The event will take place at the Epilepsy Institute, 1311 Westbrook Plaza Dr. Winston-Salem. From 10 A.M. to 2 P.M. on November 3rd, 2007.

There will be activities for children.

We will have a number of presentations and information on the following topics:
* Epilepsy and seizure disorders.
* First Aid instructions for seizures
* Tests for epilepsy
* New treatments for seizures
* Clinical trials for new treatments for epilepsy
* College scholarships for people with epilepsy or their family members
* Epilepsy support dogs

If you have any questions please contact us via email: coordinator@epilepsysupportnc.org

One month...

2007-09-18T14:47:00.000-04:00

I am seeing my Dr. today. Hopefully the PET scan will provide some information of use. I have tried looking through them myself, but am obviously not qualified... as I can't tell a thing by examining the images. I'll try to get some posted soon.

My last seizure was exactly 1 month ago. Hopefully I can make it a few more decades without another. Wish me luck!

8 Thousand Hits

2007-09-17T16:39:00.000-04:00

I got my 8 thousandth page hit today. Someone visiting from Proberta, California.

I started this blog so that I would not have to call up everyone I know to tell them what was going on with my seizures... they could all just check on me here. I never thought I would end up getting 8 thousand hits. This new-fangled Internet thingy is pretty cool. ;)

PET PICS

2007-09-13T17:30:00.000-04:00

Here are the pics of me with my EEG leads wrapped tight to my head.

And the two techs who wrapped it.

This is me about to go into the PET scanner.

The PET Experience

2007-09-12T17:01:00.000-04:00

I just got back from the imaging center at Baptist Hospital. The procedure was not that bad. Here's how it went:

I went and got EEG leads placed. They then wrapped my head tightly with gauss so that the leads would not fall off as they took me over to imaging. I get there and go over some paperwork and they request some cash before doing the test. Then they stick me with some saline fluid and a "butter-fly" needle. After a wee-bit of saline, the tech brougt out the radio-active stuff, glucose with radioactive flurine. Not much... just a few ml. He had to bring it out in a case about the diameter of my arm and perhaps 10" high. After inserting that, they had me sit in the dark for 45 minutes. The instructions were to try to rest and not think too much. THAT was rough. After about 30 minutes my head started hurting really bad. I'm not sure if it was lack of food, the EEG leads pressing into my head, or the radio-active positrons flying out of my head. But I made it through and then they removed the portable EEG & Leads. Then they put me in the tube detector thingy. It was a bit larger than an MRI, but not nearly as loud. I only had to stay in that for 10 minutes. And that was it!

I got a copy of the images. I'm still figuring out how to get the things off the disk and onto the net. Soon as I figure it out, I will post. I won't know any news about the test until my dr. or another Dr. gets to do the analysis.

Food v. PET scan

2007-09-12T10:45:00.000-04:00

For this PET scan, they have instructed me to not eat after 7:00 A.M. All I get is water! I am going to be so hungry. But Christa said she would take me out for food after the test is done. I am thinking of a Texas Jack burger from Back Yard Burgers. Yum!

I suspect that they will attach the radioactive material to glucose and then since I have not had anything to eat, my body will send the sugar to where it is most needed in the brain. From there, the radioactive stuff should emit the positrons which are detected by the PET gizmo. I'll ask the techs and let you all know if I am correct.

Testing Tommorow

2007-09-11T16:44:00.000-04:00

I'm getting a PET Scan and EEG test done tomorrow at Baptist Medical Center at their Epilepsy Monitoring Unit. I've never had a Positron Emission Tomography scan before, but as I understand it, they pump some radioactive stuff in your body and then use a detector to determine where it went... well, it is a bit more complex than that, so here is some info off a Radiology site.

Before the examination begins, a radioactive substance is produced in a machine called a cyclotron and attached, or tagged, to a natural body compound, most commonly glucose, but sometimes water or ammonia. Once this substance is administered to the patient, the radioactivity localizes in the appropriate areas of the body and is detected by the PET scanner.

Different colors or degrees of brightness on a PET image represent different levels of tissue or organ function. For example, because healthy tissue uses glucose for energy, it accumulates some of the tagged glucose, which will show up on the PET images. However, cancerous tissue, which uses more glucose than normal tissue, will accumulate more of the substance and appear brighter than normal tissue on the PET images.

I'll post more tomorrow. Hopefully with some pictures!

Grateful for the Past 11 Days

2007-08-21T21:12:00.000-04:00

Scott had another tonic clonic seizure this evening around 6:00 pm while at the Epilepsy Institute. He did not injure himself (thank the Lord!) but had to be put on oxygen for a while. He is resting now. We are grateful for the past 11 seizure free days and realize that 11 days is more than most epileptics have without a seizure. Dr. Dean is going to send him for some more tests - presumably some time later this week. I'll keep you posted as soon as I learn more. Please join us in saying a prayer of thanks that Scott was not injured this evening. Please also keep him in your prayers as he undergoes additional testing.

Thanks everyone,

Christa

3 days...

2007-08-13T20:52:00.000-04:00

Well, I have to start again... 3 days no seizures. Discouraging, but a lot of people would be thrilled to make it that long. I count myself fortunate. :)

Another Day.... Another Seizure

2007-08-10T20:27:00.000-04:00

Scott had another tonic clonic seizure this evening. Our son found him seizing around 8:00 pm in our living room. During this seizure he only stopped breathing for a minute or so. Luckily Scott's only injuries seem to be a bruise on his right jaw and a slight headache. He is resting now. We will try to update everyone again tomorrow on his condition.

Christa

RNS Discussion with Dr. King-Stephens (Part 5)

2007-08-06T22:57:00.000-04:00

Part 5 of my RNS discussion with Dr. King-Stephens:

The RNS is able to detect brain activity that could indicate a seizure. How does it know the difference between normal activity and seizure activity?

The physician decides what is normal and abnormal for that individual. By looking at a number of records of brain activity from that patient, the physician can identify the specific patterns that characterize that person’s seizures. The device is then programmed by the physician to detect those specific patterns. Thus, the device is programmed differently for each individual.

If the RNS is able to distinguish between different types of brain activity it is essentially reading your mind. Can it detect emotional responses?

The RNS detects the brainwave activity but does not "read the mind". It would probably take a supercomputer with millions of electrodes placed over every cell in the brain in order to be able to "read" peoples thoughts. After all, the mind is the expression of all the brain cells activity at any given time.

For what other purposes is the RNS technology being used?

Right now, the RNS is only being used in a clinical trial for refractory epilepsy. It may be used for other conditions in the future.

Previous Posts (Part 1 Part 2 Part 3 Part 4)

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

RNS Discussion with Dr. King-Stephens (Part 4)

2007-08-05T17:12:00.000-04:00

Part 4 of my RNS discussion with Dr. King-Stephens:

How does the RNS “know” to send an electrical pulse to the brain?

The RNS uses very sophisticated computer programs to recognize abnormal brain electrical activity and distinguish it from normal activity. The data (or EEG) is stored in the RNS and by communicating with a laptop computer, similar to a heart pacemaker, it can be retrieved and sent to a computer at NeuroPace and stored for future review.

Once the patient downloads the activity that is stored in the device to the main computer at NeuroPace, the doctors can review it and make changes in the detection programs to improve the ability of the device to recognize the seizure activity. The better the device gets at distinguishing the abnormal from normal brain activity, the better it works at blocking the seizures and improving the control of the epilepsy.

The RNS must acquire a significant amount of data about your brain. How is that data stored and how is it sent to your physician?

The data is stored on servers and is password protected, that is, the physician can access the information only for his or her own patients.

The pulse of a VNS has to be powerful enough to reach the activation threshold of the Vagus nerve and cause it to “fire”. How powerful do RNS pulses have to be in order to interrupt seizure activity in the brain?

The magnitude of the electrical activity delivered to the brain to control the seizures is much lower with RNS than VNS, (probably around 15% of what is needed for VNS). Since there are no pain nerve fibers in the brain, the patient does not feel the "shock" applied by the device.

Previous Posts (Part 1 Part 2 Part 3)
More tommorow.

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

RNS Discussion with Dr. King-Stephens (Part 3)

2007-08-04T17:11:00.000-04:00

Part 3 of my RNS discussion with Dr. King-Stephens:

The VNS has a number of possible side-effects, the main one being that it affects your voice. What are some possible side effects that you have already discovered during your studies?

Some patients have had mild tingling and/or pain of the scalp or face but by reducing the intensity of the stimulation or repositioning the electrodes, the symptoms disappear. So far, the side-effect profile has been excellent, i.e. few side-effects, and the patients do not have any sensation when the brain is receiving the therapy, which averages about 600 very brief pulses a day!!!

One of the things that most concerned me when deciding to get a VNS is the whole concept of being a Cyborg: Part man – part machine. The RNS seems to be more invasive and more “cyborgish”. How would you address these concerns to potential study participants?

The RNS in no way can change the personality of the person or "take over" their feelings or thoughts because it is only stimulation; less than 1% of their brain. There is no chance of becoming the "Terminal Man".

If you had epilepsy, what treatments would you try before electing to have a RNS implant?

If I had epilepsy, I would try at least 2 medications, alone or in combination, before looking at the possibility of having "curative" surgery. If I was not a candidate for curative surgery but could have the RNS, I would go for it. If not a candidate for surgery or RNS, then I would try VNS or an investigational medication.

Previous Posts (Part 1 Part 2)
More tommorow.

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

RNS Discussion with Dr. King-Stephens (Part 2)

2007-08-03T17:02:00.000-04:00

Part 2 of my RNS discussion with Dr. King-Stephens:

I have generalized tonic-clonic seizures. My EEG shows that the electrical activity does not start at one point in the brain and spread, but occurs on both sides of the brain at once. Would I be a good candidate for an RNS?

At this time, only patients who have focal onset seizures, 1 or 2 foci, are candidates for the study. It might be that in the future, people with generalized seizure onsets might be candidates for this therapy.

The VNS has been around since the nineties and has been implanted in over 30,000 patients. It is well studied and effective for many people. Why would I want to consider an RNS as opposed to the VNS?

VNS is indicated for patient in whom we do not know where the seizures are coming from, have more than 2 foci or have generalized onset seizures. Thus, the indications for using VNS or RNS are very different at this time.

How do you find the specific point on the brain at which to place RNS leads? Is an EEG or regular MRI sufficient?

In order to determine where the seizures are originating in the brain, we do EEG, MRI and occasionally PET studies. If the non-invasive studies can not give us the answer, we sometimes introduce (implant) the EEG electrodes into or placed on the surface of the brain, to capture the seizures and investigate whether we can find the focus or foci. This requires a surgical procedure and observation in the hospital for 7 to 10 days.

Once you have received a VNS, Cyberonics recommends that you not have any further MRIs as the strong magnetic field could heat up the leads wrapping around the Vagus nerve. As an MRI is required to determine the locations to place RNS leads, could a person with a VNS have an RNS implanted?

A person with a RNS generally should not have a MRI scan of the brain because the device creates so much artifact that the information given by the scan is often useless. Also, the MRI may cause heating of the leads. If an imaging procedure is necessary, x-ray based technologies such as a CT scan should be used whenever possible. Hopefully, future RNS devices will be MRI compatible.

The study website indicates that the leads & electrodes are implanted in the brain and that the neurotransmitter is placed in the skull. When you say “in the skull”, does that mean in the cavity with the brain or under the scalp?

The device is embedded in the skull and does not go into the brain. It is then covered by the muscle, fat and scalp and is therefore not visible. The EEG electrodes do go into and/or sit on the surface of the brain and therefore are under the skull.

Previous Posts (Part 1)
More tommorow...

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

RNS Discussion with Dr. King-Stephens (Part 1)

2007-08-02T16:08:00.000-04:00

I recently had the opportunity to candidly speak with Dr. King Stephens about the Responsive Neurostimulator (RNS), a new treatment for epilepsy that is currently in clinical trials. Dr. King-Stephens is the Director of Clinical Neurophysiology at the California Pacific Medical Center in San Francisco.

(As the discussion was quite long, I'll split the transcript into 5 posts.)

Neurology is probably the most complex of all sciences. The amount we know about the brain is far outweighed by the amount we still have to learn. So what in the world possessed you to go into neurology? Surely you could have chosen something more lucrative and less frustrating… like podiatry or plastic surgery?

My interest in neurology is due to the complexity of the brain. Every patient is challenging and keeps the work interesting. Having the opportunity to do research and take care of patients is a privilege and rewarding when we can improve someone's life.

How much have you been involved with the development of the RNS?

I was not involved in the preclinical development of RNS but have worked in the clinical study for almost 2 years.

Experiments with direct neurostimulation and neuro-feedback to the brain have been going on for many years now. What technology specific to the RNS has moved the device to the point where you think it will be practical as an implant.

Improvement in the microprocessors (smaller size and increased speed), reduction in the size of the battery and specially in the algorithms that help recognize the seizure activity have made possible the development of this device.

I had brain surgery about 15 years ago to remove some tissue that was hemorrhaging on my brain and was causing simple-partial seizures. The surgery involved opening a hole the size of a playing card in order to remove the tissue. I had to stay in the hospital for 5 days! What size hole is required for the RNS leads to be placed? And have brain surgery techniques advanced much in the last 15 years?

The size of the (burr) hole to implant the electrodes is about the size of a quarter. The opening of the bone for embedding the RNS device is about 1 x 1/2 x 1/4 of an inch. The advancement in surgical techniques has involved better and safer anesthesia medications, MRI studies during or after surgery and post-operative care.

More tommorow.

If you have epilepsy and are interested in finding out if you are a good match for the RNS clinical study, Call: 1-866-904-6630 or go to: www.seizurestudy.com

ADA Restoration Act of 2007

2007-08-01T10:19:00.000-04:00

On July 26, the anniversary of the passage of the Americans with Disabilities Act, House Majority Leader Steny Hoyer (D-MD) and Representative James Sensenbrenner (R-WI) introduced the ADA Restoration Act of 2007, H.R. 3195.

Recent court decisions (Sutton v. United Airlines - 1998) have dramatically limited the scope of the Americans with Disabilities Act (1990) such that most people with epilepsy are deemed not to have a disability and therefore cannot seek legal recourse if they are discriminated against because of their epilepsy.

Why are they deemed not to have a disability? Because the Supreme Court decision in Sutton v. United Airlines required that the effect of mitigating measures (such as taking medication) be considered in determining if someone has a disability under the ADA... Of the more than a million people living with epilepsy, about 60 percent have their seizures controlled by medications. That is great, but anti-epileptic drugs (AEDs) by their very nature are designed to reduce brain activity and the potential side effects of these medications can go on for pages. Many times, the negative side effects of AEDs can exceed the advantage of having seizure control. But let's assume that one has a seizure at work, goes to the Dr. gets on meds that control the seizures completely with few side effects. Well, the person is still likely to be discriminated against because his boss is scared he will have another one.

Take John Roberts for example, you can bet that when court gets back in session, even if he is not diagnosed with epilepsy, those other 8 Judges are going to be quite apprehensive that their Chief Justice might just have another seizure. A perfect example of the discrimination he already faces are all the questions posed by the media concerning his ability to perform his job. If he did not already have the top spot on the bench, chances are that if he was diagnosed with epilepsy, he would be less likely to get promoted.

Until 1999 there was little fanfare about whether a person with epilepsy is covered by the ADA, or its model counterpart, the Rehabilitation Act of 1973. Most cases presumed that epilepsy was a covered disability.

Since then, courts have recognized that epilepsy is a disability in only a few cases. As a result, people with epilepsy are questioning whether they are even entitled to the protections of the law. Even more troubling is that employers, public accommodations, schools and state agencies have also begun to ask the same question.

Many people who are trying to work despite having an impairment are not being given a fair chance. The ADA Restoration Act of 2007 would correct this injustice. This legislation restores the basic right of people who have a disability to be judged based on performance – just like women, minorities, and the rest of the American workforce.

The Epilepsy Foundation of America makes it easy to take action by sending your Representative the ADA action alert.

Judging With Epilepsy

2007-07-31T08:43:00.000-04:00

I awoke this morning to the news that John Roberts, Chief Justice of The United States, suffered a seizure yesterday while vacationing at his summer home in Maine. My first thoughts were, "Dude... that really sucks to have a seizure on your vacation." Evidently they dragged the poor chap to the hospital and ran him through a battery of tests that did not indicate any underling medical conditions that might cause a seizure. It was diagnosed as a benign idiopathic seizure - this is doctor speak for: "We have no clue as to what caused it, but it doesn't appear to be life threatening." Further information came out that he had had a seizure about 14 years ago while playing golf.

This is where the fun starts... CNN brings in some commentator that starts blabbering about how Roberts might not be able to do his job now that he had a seizure, and what if he could not make it back to work after his vacation. Not content to just be stupid, the commentators continue their moronic rant, After all, he has had one before and the Chief Justice has a lot more responsibilities that the other justices... maybe he could work from home...

If you ever wondered why people with epilepsy are discriminated against, it is morons like this. They have no idea what they are talking about and turn epilepsy into a condition that would prevent you from doing your job.

Harry Potter Full Review

2007-07-30T12:50:00.000-04:00

Part 1 of 7
I finished Harry Potter and the Deathly Hallows late last night and after reading it, I felt drawn to write a "no spoilers" review of the book and the series (in seven parts of course). The final installment in this long running quest is definitely the best, but most importantly, it is the capstone of an amazing tale.

How good is it?
Earlier in last week I heard tales of people at my office finishing the book within 2 days of their purchase. I assumed that they must be die-hard Potter fans with nothing else to do. I am not one, but I borrowed a copy from one of those aforementioned die-hard fans on Wednesday and read a chapter then and another one on Thursday. By Friday night I had reached around page 100. Saturday evening I had reached 350. Sometime Sunday afternoon, I picked it up again without the intention of finishing it that day, but there is a tipping point in the novel around the 400 page mark where you simply can't stop reading. Rowling, after penning a few thousand pages of Potter, has finally mastered the art of pacing a novel, and for the next 349 pages it is non-stop edge-of-your-seat nail-biting action. So good that I would say it is absolutely worth reading the previous 3 thousand pages just so you can savor reading those last 349.

There won't be any spoilers in the review, as most of us Muggles who are fans of the book take their cue from Potter and are respectful... but, our patience only lasts so long. My co-worker summed it up perfectly this morning when she shouted over her cube to fellow readers in surrounding cubes: "What's wrong with you people? You've had a little over a week to read the book. What's taking you so long?"

If you just want the bare bones review of the 7th novel: 5 out of 5 stars. If you want to find out why the Harry Potter series is one of the greatest tales ever spun, I'll be covering that in the next six parts.

69 Days... No seizures

2007-07-23T11:56:00.001-04:00

Today marked the 69th day since my last seizure. I wish I could point to any one thing that keeps me from having them. If I had to guess, I would say getting more sleep. I have been very carfull about getting enough rest. Although there are days where I only get 6 or 7 hours, I try to rapidly balance that out with additional sleep the next day.