Judging With Epilepsy

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

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

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.

VNS Side Effects

I had my VNS current setting moved from .75 mAmps to 1.0 mAmps about 6 weeks ago. As always, when you have your settings adjusted "upward" there is a period of discomfort as your body adjusts to the increase in energy being sent to the bundle of nerves in your neck. One of the typical side effects that I experience is a tightening of the throat and increased hoarseness during stimulation. I have finally adjusted so that I no longer feel that, however a second side effect has not gone away.

When I have my neck turned in certain directions or when I am laying down in particular positions, the pulses cause a muscle in my neck to constrict or flex. It is just one muscle bundle about 4 inches long and it will activate during the 30 second pulse. My thought is that it only occurs if the muscle is pressed against the area where the leads are located. So if my pillow is pressing the muscle against my neck, it activates more often. It is quite aggravating and can make it hard to get to sleep unless I can get my pillow situated just right.

I am going to get my pulse width turned down to see if this will help. I'll keep you updated. If anyone else out there has this side effect, please let me know.

RNS Clinical Trials

NeuroPace is currently conducting clinical trials on their RNS device. I have posted about this device last year, but now, thanks to a representative of FischerHealth, I have some more information about the device and how to find out if you are a candidate for their clinical trials.

NeuroPace has set up a Web site and toll-free numbers specifically to allow people living with epilepsy to easily learn if they are a candidate for the RNS System. Both are staffed by nurses who can give information on the trials and the closest trial site.

Toll Free Number: 1-866-904-6630
OR
Website: www.seizurestudy.com

Completely Off Topic: Baby Bird

In short, I am a big fan of birds. I happened to come across two of these little birds that were living in my garage. Evidently their mother decided that the dilapidated bird house I had tucked away in my garage was sufficient for her nesting needs and decided to lay some eggs there. I managed to get a picture of this baby bird when it flew out and landed on the car.

41 Days - No seizures!

I've now made it 41 days since the last seizure. I'm pretty psyched about it. Now, if I could make it another 41 years...

Kick it up a notch!

I got my VNS turned up earlier this week. The current has been changed from .75 mAmps to 1.0 mAmps. The rest of the settings have remained unchanged (the are listed on the sidebar) I have definitely noticed a difference in the amount of interference it has on my speech. Due to the placement of the lead, the VNS activates the muscles in my neck as well. Although this does not hurt, it is somewhat bothersome as it causes a number of muscles on the right side of my neck to flex during the activation. Interestingly enough, the muscle activation does not occur with every activation of the VNS. A the moment, it is only happening perhaps 15 times a day.

Also, today marks 4 weeks without any seizures! Whoo hoo!

Epilepsy Educational Videos

Winston posted this on The Federal Review today. It is a series of clips from The Center for Epilepsy & Seizure Education in British Columbia.

Update.... Feeling Better

Just wanted to send a quick update to let everyone know that Scott is recovering from his latest seizure. He is still tired but seems to be feeling better. His only injury is a stubbed toe - which is a nice shade of red and black. Thank you all for your calls and concern.

Christa

Yet Another Dreadful Tonic Clonic Seizure

That's right... Scott had another tonic clonic seizure this evening around 9:40 pm while cooking in the kitchen. Our son, Ryan, and I were able to get the kitchen gadgets out of his hands and help him keep from hurting himself too much. Luckily, I was wearing my bracelet which holds a VNS magnet and was able to swipe it early on. Scott did stop breathing for a few minutes but came out of the seizure much more quickly than usual. He is resting now and has only complained of stubbed toes, a sore neck and fatigue. I will try to post more tomorrow to let everyone know how Scott is doing.

Christa

No Seizures... since the last one...

I haven't had any more seizures since the one on April 13. So nearly a month now. My goal is that I won't have any more ever again. Wish me luck!

VNS Therapy Video

I found this video on U-Tube. Basically an ad for VNS Therapy for depression - but it still has really cool graphics showing how the device works.

Middletown boy's life is a balancing act

This is a great article about a young boy named Peter and his experinces with epilepsy. Here is a brief snippet. Do check out the whole article at DelawareOnline.

As the children in the Tender Loving Kare kindergarten enjoyed a Valentine's Day party, 6-year-old Peter Serwik's mind went blank and he fell out of his chair.

That's the last time he had a seizure -- a vast improvement from his infancy, when Peter would experience about 30 a day.

Peter has epilepsy, a condition defined by seizures. On Wednesday, he'll address the nation's leaders on Capitol Hill as the Delaware representative for Kids Speak Up!, a national program in which children petition congressional leaders for money for various diseases and disorders.

"If we don't get [money] we'll have seizures every day," said the young Middletown resident.

Eslicarbazepine (ESL)

It is always good to see new epilepsy medications being developed. This article from eMaxHealth describes Eslicarbazepine (ESL).

A new study appearing in the latest issue of Epilepsia shows that a new drug called Eslicarbazepine (ESL) shows promise as a treatment for epilepsy patients whose symptoms remain uncontrolled with existing medications. A once-daily dose was shown to be most effective, offering patients added convenience as current treatments can involve several doses per day.

The trial was conducted across 19 locations in five European countries: Croatia, The Czech Republic, Germany, Lithuania and Poland. Patients with at least four partial-onset seizures per month, in spite of treatment with other medications, were administered Eslicarbazepine doses ranging between 400mg and 1,200mg. The study demonstrates that ESL is well tolerated and effective when used as adjunct therapy for adult patients with partial epilepsy, fully eliminating seizures in 24 percent of tested patients. The occurrence of side effects was also low compared to other current treatment methods.

No age- or gender-related differences were found in the effectiveness of the treatment. "Our study shows that ESL was safe and well tolerated," says Patrício Soares-da-Silva, co-author of the study. "We believe that Eslicarbazepine may have the potential to become an important new central nervous system drug not only for the treatment of epilepsy, but also for patients suffering from bipolar disorder and neuropathic pain."

Recovery from a Seizure

How long does it take to recover from a tonic-clonic (gran mal) seizure?

I believe the time varies by person, but in my case, it has changed with medicines, VNS treatment, and age. I first started having seizures when I was 12, I think that first tonic-clonic seizure was strong enough that I slept the entire day... maybe part of the next one as well. As one typically falls down when having a tonic-clonic seizure, recovery time depends a lot on what you hit and where. Those times when I have banged my head up very badly, it took longer to recover - if only because the physical wounds have to heal. Of course, if you fall hard enough on your head, you can get a concussion and that can increase the recovery time as well.

Further complicating things is the intensity of the seizure. Before I got my VNS, tonic-clonic seizures always caused me to stop breathing for as much as 4 minutes. After about a half-year of VNS treatment, when I have had a tonic-clonic seizure, I don't stop breathing. I think this has reduced my recovery time dramatically. So, I think I would have to put recovery time into 4 different categories:

Pre VNS Tonic-Clonic with head injury:
A few hours just to regain coherent speech & though. Time at hospital or with icepack on bruises. At least a full day of sleep and maybe another couple to rest.

Pre VNS Tonic-Clonic without head injury:
A couple hours to regain coherent speech & thought. A day of sleep.

Post VNS Tonic-Clonic with head injury but no cessation of breathing:
A half hour to regain coherent speech & thought. Time at hospital or with icepack on bruises. Extra sleep needed - at least a few hours of sleep after the seizure.

Post VNS Tonic-Clonic without head injury or cessation of breathing:
A half hour to regain coherent speech & thought. Extra sleep needed - at least a few hours of sleep after the seizure.

Now, as a side-note. A few months ago, I had a tonic-clonic seizure and hit my head, but not too bad as I was sitting at a table and did not have far to fall. I did not stop breathing and was able to stand up after perhaps 20 minutes. I did not feel too bad, but I took a nap for a few hours and then got up and was active for the rest of the day. But, the next morning I had another tonic-clonic seizure - I believe because I did not rest enough after the one from the previous day. So, last week, I had a tonic-clonic seizure and I made sure that I slept much more and rested for the next 2 days.

As a further side note, I will probably have to revise the post after my family reads it and tells me the times are wrong. See, that is the other thing, I remember very little from the days when I have tonic-clonic seizures.

Recovered...

After a lot of TLC from my wife and rest, I have finally recovered from the tonic-clonic seizure I had last week. Nothing like a seizure to interrupt the perfectly good streak of blogging I had going from last week. Now I have to try to catch up on all three of my blogs...

Another Tonic Clonic

Scott had another tonic clonic seizure while in bed this morning at 1:00. I was awakened to find him seizing on top of me. Luckily, I was able to get out from under him and grab a magnet to manually active his VNS. He came out of the seizure shortly thereafter. He doesn't appear to have any bumps or bruises from the seizure. However, he did complain of a headache and nausea. He is resting now. I will post more tomorrow to let everyone know how Scott is doing.

Christa

Pulsing light silences overactive neurons

This article sent to me in the comments (thx matt) is pretty interesting. MIT engineers have figured out ways to control neurons using light and modified genes. It looks like it has a long way to go before it can help with epilepsy, but I am hopeful! Check it out:

Scientists at the MIT Media Lab have invented a way to reversibly silence brain cells using pulses of yellow light, offering the prospect of controlling the haywire neuron activity that occurs in diseases such as epilepsy and Parkinson's disease.

Conversly, it reminds me of the novel, Snow Crash, by Neil Stephenson. A computer program flashes a pattern of lights into a programer's eyes which causes them to die. Great book - great author - always about 20 years ahead of his time.

More Blogging...

Yet again I am starting another blog. I like to write about a variety of different issues, but I feel that the best blogs are those that focus on a specific topic. So I plan on continuing to blog about epilepsy here while starting a separate one on philosophy, physics, and religion. Stop by at emeriol.blogspot.com