Update on the Last Year and a Half (Part 1)

No posts generally means either things are going well, or the author is lazy/absent minded about the blog.
There's been a combination of the two, but I shouldn't leave you all in the dark about what's been happening.

Nearly a year ago, in the summer of 2012, I started the Ketogenic Diet, a diet with high fat, low carbs and low protein - especially low carbs.
Similar to the Atkins Diet, it puts the body in a mode of running on fat, rather than using sugar as the main fuel. This is called a state of ketosis.
The diet requires high precision, as the wrong number of calories, the wrong ratio of fat to (protein + carbs), and simply too many carbs within the right ratio will change the depth of ketosis.

I've known that this diet exists for many years, but it took until after many medicines had been tried and surgery had been tried for me to choose it.
Why? The ketogenic diet is generally described as healing within about 2 years; I wanted instant healing.
So, it took until many medicines had been tried and found insufficient, surgery had been tried and failed and one or two more medicines had also proved not good enough for me to look at the diet.

Then, in late July 2012, I started the diet, and a period of about 7 weeks with no seizures and no auras began - a wonderful beginning.
With great help from Mom, I built up a database of ingredients, with all their nutrition facts regarding fat, protein, carbs and calories, as well as recipes that conformed to the rules.
Having experience cooking for the whole family in the past, I was soon able to transfer from cooking some meals myself and having other meals cooked by Mom to cooking each and every meal on my own.
(But I'm still to this day refining my ability to write things I'll need soon on the shopping list soon enough in advance of running out...)

(In order to keep the post length reasonable, I'll leave it hanging here. Check back in a day or two.)

More Change, But Doing Well

For the nearly-a-week since my last seizure, my sleep pattern has changed.
Instead of waking at 6:45 to my alarm, and either vegging for half an hour before taking a shower or sleeping in until 8, I now am waking up a 5:30 sharp, with no alarm, rather alert.

Yesterday evening I missed my evening medicine for the first time in years - not only forgetting to take it at the scheduled time, but not even remembering it at midnight when I can't get to sleep. I got to sleep about midnight, and woke up at 5:30 as now usual.

I had a couple of auras, one somewhat alarming, but neither feeling like a certain seizure, and neither becoming one.

Frequency, Phase Changing

I've had a few weeks with no seizures, but now, I've had another.
I had a couple nights staying up later than usual, and today I had a couple of auras that Jon was able to dismiss.
However, I didn't take Ativan, and I spent about an hour on Facebook.

Reason?

Just an hour ago, I had a seizure.
It is strange, that the most common times for me to have seizures seem to have moved from the end of the week to the beginning of the week.
I can't figure out what was the cause.
Maybe less sleep than ideal.

At Last. *sigh*

The fever is gone from my cold, and the congestion is going away. I'm able to breathe through my nose, and only have to blow it once in a while.

However, last night I had a seizure at 11 PM. I had been in bed

* Sorry, the post above was cut off by another seizure, at around 11 AM.
But there is still improvement to be observed!
Whereas having seizures would hit my head hard, making it difficult to do homework after a cluster half a year ago, I am now feeling almost like there was no seizure. Full recovery, in only a few hours!

Thank you for your prayers!
Please continue, and don't forget to thank God for the improvements!

Hooray! A Cold!

Huh?

I have a rhino virus, a cold that really hits the nose hard, making it difficult to breath except through the mouth with all the congestion.

After starting the new medicine Vimpat (see previous post or two), this is at least the second cold I've had with no seizures. Unprecedented!

By the way, tomorrow's my birthday.
It would be a wonderful gift from God if tomorrow morning I wake up with no cold, having had no seizures!
But then, God knows much better than I do what makes a gift good.
It's at least a great gift to have no seizures during a cold!

Update on Monday

Yesterday morning I ate a slice of chocolate chip bread, and the theobromine (a chemical very similar to caffeine, but not identical) got to my head within an hour and I had a seizure after about three months of peace. (For more about chocolate and caffeine, read http://www.xocoatl.org/caffeine.htm)

I had a total of four seizures yesterday, and I took some extra medicine.

According to earlier plans, Saturday evening's medicine contained the last half-pill of Trileptal for me. Getting off of that medicine without having any seizures in the process had some part in tempting me to overestimate my stability. After having seizures, I took a half-pill, some extra of the new medicine that is replacing it - Vimpat - and some Ativan, which is most usually used in a pragmatic manner.

The four seizures were separated by intervals of about 2 or 3 hours. After dinner I had the fourth and last, and my mind slowed noticeably after it.

Today I have felt much better. My mind is clear, and though I have had some feelings similar to auras (an experience that always precedes a seizure, for me, lasting about 30 seconds before I either it ends and I'm fine or I lose muscle control and consciousness), I don't think any real auras have started.

It is very nice that I have my brothers with me. This summer, I figured out that hearing humor could help stop seizures when I feel an aura. I told Johnny and Mikey about it, and several times, I went to them and said "I'm having an aura," and they immediately did and said funny things. My guess is that the humor distracts me from the stress of soon having a seizure, and stress increases the probability of a seizure coming on.

My last aura this summer was chased away when I told Johnny, "I'm having an aura," and he responded in an artificial irate voice, "Am I my brother's keeper?" (See Genesis 4:9). He followed that up with, "Don't answer that." It set me off laughing then, and every time I remember it.

Up and Down

According to the plan, Saturday evening was my last dose of Trileptal. Everything was going well, with no seizures since about three months ago.

Then, this morning, I got too adventurous. My sister Rachel had made some chocolate chip bread, and I decided to have a full slice. An hour of so later, I had my first seizure in a quarter of a year.

Mom pointed out to me that it is easier to keep having no seizures than to stop having seizures, so I took some extra medicine, including a half pill of Trileptal.

Please pray that I will not have any more seizures, whether because of natural causes or because of foolish decisions. (Like eating chocolate.)

Getting Even Better

At least two and a half months, and no seizures! During the past month or two, I've even caught a couple colds without having any seizures - which Mom tells me is unprecedented.

I'm now halfway through my second to last week of taking Trileptal. It's an anticonvulsant I've been taking for several years, which proved better than what it was replacing. However, as I mentioned in the last post, I'm phasing out of it and into Vimpat, and the side effects are getting noticeably better. I've long been slow at finding words, but I and my family have noticed it speeding up.

Prayer request: in the past, when transitioning from one med to another, things have gone well until a couple weeks after stopping the old one. Then I have a short burst of seizures. Pray that that will not happen.

Success!!!...?

I'm now several weeks into taking two classes at LeTourneau from home. Atoms Nuclei and Particles is being taught by Dr. Ball, and Advanced Quantum Mechanics by Dr. DeBoer, and they're going pretty well. I'm also taking a class at PCC - Speech 1. It's also going well.

Now for the neurological news. The MRI was taken, (see previous post) but it didn't see much besides the expected scars from the grid. That slows plans of surgery, but that is no longer such a disappointment, because a final solution which we gave up on several years ago seems to be promising again - medication.
A couple months ago, Dr. Maleeva gave me a new prescription, called Vimpat. It has less interference with other prescriptions than most other second meds, and it has less side effects. It works in the same way as Trileptal, which I've been taking for a long time. So, I'm phasing out of that old medicine, which we think is causing most of the slowing down of my mind.
For about a year, I was having seizures in clusters, about 6-10 per cluster, clusters lasting 2-4 days, about one cluster a month. Since I started taking Vimpat, I have not had a single seizure. It's probably been more than two months now!

Finally, Another Update

I've finished my Spring '11 semester, I've nearly finished a summer class, I'm not going back to campus this Fall, but I'm still taking two classes at LETU in the fall - from home.

On Friday the 29th, I'm getting a 3-Tesla MRI at USC.
I've had MRIs before, but not this powerful. Hopefully, this one will be able to see abnormalities in my brain that the others could not, thus finding where my seizures start.
Dr. Maleeva says she thinks the probability of finding something is about 20% - or maybe 30% - I no longer remember which she said. But either way, it's a pretty good probability.
One obstacle to my being able to have this MRI is my VNS, because the wire wrapped around my vagal nerve will have some current induced withing the metal by the magnetic field, causing it to heat up. That could cook my nerve. However, USC has figured out a way to do it so that the wire in a patient with a VNS does not heat up significantly, and has done it several times without injuring anyone.

If the MRI is successful and the spot in my brain where the seizures start is found, I will need another grid EEG under my skull before they have it pinpointed enough to do anything. The trauma of 3 years ago does not make this out of the question, or even raise a significant doubt in my neurologist's mind, because this grid will be much smaller than the first one; the MRI will have eliminated most of the area covered the first time.

Assuming that the MRI does succeed and the EEG pinpoints where the seizures start, there will be at least one new option for eliminating my seizures. If the seizures start in my left temporal lobe, a part of the brain that can be done without, then the surgical resection that I was hoping for up till three years ago will be an option. If the seizures start in the frontal lobe, where the intelligence is located, then my neurologist does not want me to get a resection for fear of damaging it. But that will not mean no hope of ending epilepsy, because a new device is being examined by the FDA, called a NeuroPace, which is similar to the VNS except that instead of being implanted in the chest and attached to a nerve, it will be implanted on the surface of the brain, right where the seizures start, and instead of being activated periodically and by a magnet, it will detect seizures starting and then zap them. Dr. Maleeva's suspicion of the seizures starting in the frontal lobe has chased away most anticipation of getting a resection, and so I am mostly looking forward to getting a NeuroPace.

Please pray that the MRI will be successful, and that I will soon be healed of my epilepsy, whether by resection, NeuroPace, or miracle.

Living Up to My Floor Nickname

A year and a half ago, I was a new student here at LeTourneau University. I was convinced that a blog would help everyone on my floor keep in touch, and so I promptly created one, and urged everyone on my floor to join as authors. Within a few weeks, I had virtually forgotten all about it, but that initial obsession with blogs earned me the nickname "Post".

Now it has been two and a half months since I last posted on this blog. That's not right! So, I guess I've got a lot to fill in.

On the last post, I mentioned the issue of moving to another floor during Spring Break (March 12-20), a nine-day weekend in the middle of the semester, depending on how well I'm doing with seizures.

So, a summary of all the seizures I've had since November 20:
Circa December 11, a day or so after I got home, I had a cluster of seizures. We think it was caused by a combination of the stress and lack of sleep I had during finals week, let loose after I was able to relax.
On Sunday, January 30 (after the third week of class this Spring semester), I had one seizure in the evening, right before dinner. That third week of class had been somewhat strenuous, and I had missed some sleep.

So, I need to make sure that I do not miss any sleep, or if I do, that I take a nap or go to bed early within a couple days.

Last semester, one of my seizures occurred during class. This morning, the professor of that class told me that he had told a friend at his church about it and asked for prayer, and just recently his friend had told him that he was still praying for me!

Thank you for your prayers.
I started this semester with a bit of stress, taking more classes than I could handle, but now that I have dropped one, I'm feeling comfortable  and able to keep up.

The End's Coming!

Most of the semester is behind me, and in less than three weeks I'll be home!
The week that is about to start will be only three school days, followed by a four-day weekend for Thanksgiving!
Wednesday there will be a test in Physics, and the Tuesday after Thanksgiving there will be a test in Statics. This way there will be very little new stuff on the finals, plus an extra shot at boosting grades for those who need it - and those who don't.

About a week ago, my hall's RD emailed me, saying that I will not be required to move to the ground floor; it is only a recommendation. He asked me to talk it over with Mom and Dad again, and re-decide whether I should move down. After prayer, thinking about it, and a couple calls on Skype, we agreed that it would be best to wait until Spring Break, a weeklong time off in the middle of next semester, to see if I really need to move down, and move down then if need be. My friends on my floor are happy about this!

I've had no seizures since that last one in class, so my seizure activity in this semester could be seen in two ways:
1 - 9 seizures total, more than either of the previous two semesters (I think), and pretty bad post-ictals with most of them - pretty bad
2 - Only two occasions of seizures, no post-ictal phase on the second one, and very good stability as long as I remembered my medicine and refrained from sugar - pretty good
I prefer the second point of view.

A Late Report on the Conference Call

Six days ago, I went to the Student Affairs building to meet with some of the LeTourneau University staff, and have a conference call with my parents.

There has been some disturbance because of my seizures - 8 seizures within 24 hours about seven weeks ago, and another seizure about one week ago. I have been relieved to hear that the seizure during Bib Lit (see previous post) was not followed by a post-ictal phase, but still, it was not comfortable for the university staff to hear that I had had another seizure.

During the conference call, it was brought up that it would probably be wise and considerate for me to move to a ground floor. (I am currently living on the only fourth floor on campus, named Eagles, but usually referred to as 4B.) I have many wonderful friends here on this floor, whom I would be very sad to move away from, and it stresses me to think about moving. However, it is undeniable that it would not be nice if I had seizures up here and paramedics were needed, and they had to carry a stretcher up three flights of stairs and back down with me on it.

I have talked with Mom, Dad, Sam, the hall RD, the floor RA, and other friends, and I'm thinking that I'll move to the ground floor straight below the floor I'm on right now at the end of this semester. So, the weekend before finals, I'll move all my belongings downstairs. (Hopefully I won't have TOO much cramming to do!) Multiple friends have told me that 1B, the floor I'll be moving to, is a very good one, with good friends to make, and that, plus the fact that I'll be able to study and spend time up on 4B with my [relatively] old friends is a comfort.

Thank you for your prayers! I recognize that God has blessed me a lot, giving me such a bounty of great friends, allowing me continued contact with them even though I have to move away, and giving me good friends to make when I move away.

Hit a bump, but back on the road

Thank you all very much for your prayers for me!

God has blessed me very much, with increased joy in Him, improving academic situations, and good health!

 Yesterday, during Biblical Literature, I had a strong aura that lasted about a minute, and it turned into a seizure. I didn't say anything about it, because I was hoping that it would not develop and didn't want to interrupt class unnecessarily, but as I've found a number of times before, it would have been better to interrupt the professor and say "I'm having a seizure." 

 I came to a while later, was taken to a dorm room on the first floor, since mine's on the fourth floor and if I had another seizure they didn't want to have to carry me down three flights of stairs. I rested there for over an hour, and felt ready to get up before Sam would allow me to, since he had directions to keep me resting for more than an hour. He got me my computer, and I started some homework while relaxing. He also checked my medicine dispenser for me, and brought it to me - I hadn't taken the morning's dose, which, after having the seizure, was good news. (I don't want seizures for no reason - that means I'm really getting vulnerable.) I took the medicine, and by the time dinner was over, I felt as if I hadn't had a seizure at all.

Monday there will be a conference call between me, my parents, and some LeTourneau University staff, talking about what they should do for future seizures.

Please pray for that.

Difficulties, But Doing Well!

It's 6:30 PM, and I just realized that I didn't take my morning dose of medicine.
That would explain why I had a couple of rather threatening auras today, the first in over a week - maybe two.
So, I took the full Ativan, and a third of the Keppra and Trileptal.

Yes, I mentioned that I've been over a week with no auras.

Also, things are going very well academically!
One class that has been somewhat difficult is Bib Lit*, not because of the quality, but the quantity of the homework - reading large portions of the Bible, and writing about each reading. I have been behind on it all.
However, the professor told us last week that he was behind, and so he's changing the schedule, making things due later. I am now getting caught up.
*Biblical Literature - looking at the Bible as a piece of literature

Another class that has been difficult is Electric Circuits 1. The professor does not believe in the inflated grades of today, but tries to give the grades that would have been given had we taken this class when he was in college. That makes it very important to work hard at this class. But, I was not putting enough time into it, until now.
I'm getting more of the homework done, I'm getting the quizzes finished and right, and I'm learning the material.

The news that Bib Lit was changing schedule, and thus forgiving some of my falling behind, was wonderful news to me, encouraging and invigorating me, and I soon realized that I could not only completely catch up, but get ahead by the end of this week.

This week is followed by a four-day weekend, for Fall Break, and I'm thinking I'll try and get well ahead.

Thank you very much for your prayers! God has really blessed me!

Back to normal

David recovered really quickly from all those seizures, so that is really something we are thankful for. Having 8+ seizures in a set used to fry his brain and it would take weeks to recover.

Thanks for the love and prayers! We'll keep the blog more up to date.

If I ever get outta here...

he goes to church. What a guy. David did not want to go into the hospital and couldn't wait to get out. He was discharged this morning in time to get to church.

His seizures didn't bother him much which is amazing since he had 8 (?) that people counted and perhaps more in his sleep.

He is back in his dorm room now talking to me on Skype and looks great. You scared us, dude!

Sam he is!

We do so like that Sam I Am. Somehow a lot of our friends haven't really believed that Sam went to a small engineering college in east Texas. He really did. He is David's roommate, partly so he could be of service when times get tough for David.

Sam has been heroic since yesterday afternoon. He has been David's constant companion and a key part of his healthcare team. God is good. Thanks, Sam.

Getting better

David hasn't had any more seizures today and is resting. He feels good enough that he is impatient to go but the doctor said he could be discharged Sunday morning.