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.
Tuesday, November 8, 2011
Monday, November 7, 2011
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.)
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.)
Wednesday, October 26, 2011
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.
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.
Wednesday, October 19, 2011
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!
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!
Sunday, July 10, 2011
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.
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.
Friday, February 4, 2011
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.
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.
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