As for me...

The coughing from the VNS is getting to me today. I have been downing those Ricola drops all day long, but it only helps for a short period of time. If I try to hold back the cough, it makes me feel like I am out of breath. Really annoying. I hope it eases up soon.

New blog added to the list...

I am adding another epilepsy blog to my list (it's on the right over there...) Coping with Epilepsy is about the experinces of a lady named Stacy. I have not checked out the whole thing, but it appears that a family member does the posting about Stacy. This definitly gives a different point of view than a first person blog like mine. Those care-takers will likely identify more with this blog. Now quit listening to me blubber on about it and check it out for yourself.

Details of the Magnet

You can get the specs for the magnet from the physicans manual, which can be downloaded from the manual page). To save some time, I'll list them out here:

The magnet needs to provide a minimum of 50 gauss at 1 inch.

The use of other, non-Cyberonics magnets will not harm the VNS Therapy System.

The magnets provided by Cyberonics are bulky & cumbersome to wear. The wristband for the magnet is a nylon weave (similar to a dog collar) with velcro strips to securt the device to one's wrist. To add to the fine design of the magnet, Cyberonics designers added a magenta sticker with their trademark dots.



To demonstrate their pride in their magnet product, the manufactuer proudly displays a picuture of the device on their website.... er... not so much. Unless you dig hard for your images using Google, you won't get a glance at one of these little jems off the internet until you receive your VNS.

The Cyberonics Magnet

I have some asthetics issues with the Cyberonics Magnet and will be writing about those in detail for a few posts: (VNS Magnet Expose) To begin with, I'm going to start with the description of magnet usage from the Cyberonics website:

What does the magnet do?
If you put the magnet over the Pulse Generator site and then move it away, the VNS Therapy System will deliver extra stimulation (if your doctor has activated Magnet Mode), regardless of your treatment schedule. You can easily use the magnet yourself, or your relatives, companions, or caregivers can use it for you if you are having a seizure. Holding the magnet over the Pulse Generator will turn the stimulation OFF. Removing it will start the stimulation cycle again.

Can I stop all my seizures with the magnet?
Each person experiences different results from magnet stimulation. Some people report that the magnet stops all or most of their seizures, lessens the intensity, or shortens the duration. For others, the magnet has limited or no effect.

When should I use the magnet?
Use the magnet in these circumstances:

To start stimulation
When you are having an aura that comes before a seizure
When you believe you are beginning a seizure
Any time during a seizure
To stop stimulation
To test that the device is operating properly

Do I have to use the magnet to try to stop a seizure?
No. Whether you use the magnet or not is completely up to you and whoever is with you. It may also depend somewhat on whether the magnet has helped before. Remember, Cyberonics recommends using the magnet daily to test that the device is operating correctly.

How does the magnet work?
The VNS Therapy device has electronic circuitry that recognizes the presence of the magnet and activates extra stimulation.

Can any magnet be used?
Only the Cyberonics magnet should be used with your VNS Therapy System. If you lose your magnet or require extra magnets, contact your doctor. In an emergency situation, however, you can try other strong magnets. The use of other, non-Cyberonics magnets will not harm the VNS Therapy System.

Will the magnet affect my normal treatment schedule?
The magnet will always override your normal treatment schedule, whether the device is currently stimulating or not. Once the magnet-activated stimulation ends, the VNS Therapy System will return to the programmed treatment schedule set by your doctor.

How often can I use the magnet?
As often as you like, but for no more than four hours of continuous magnet activation (one right after another). Continuous or frequent use of the magnet will use up, or deplete, the battery in the Pulse Generator and could hurt the nerve. If you use the magnet frequently, you may need your normal stimulation settings to be adjusted. Discuss this with your doctor during your next visit.
Because the magnet usually activates the device for 30 or 60 seconds each time you use it (depending on what settings your doctor uses), there is no effect from using it again during this same period. Wait until the current stimulation cycle ends before trying it again.

What if the magnet is accidentally kept in place over the Pulse Generator for an extended period?
No stimulation will be delivered while the magnet is kept over the device. Normal and magnet-activated stimulations will start again only after the magnet is removed.

Is it possible to stop all stimulation using the magnet?
Yes. If you notice unusual or painful stimulation, hold the magnet over the Pulse Generator and keep it there. Then contact your doctor immediately. The magnet will stop all stimulation while it is held in place. You may need to secure the magnet by taping it over the device.

Who should carry the magnet?
You should carry the magnet so that it is always with you. You may also want your family members or caregivers to have access to a Cyberonics magnet in case they see you having a seizure.

Is the magnet an environmental hazard?
The Cyberonics magnet can damage computer disks, credit cards, watches, and other items affected by strong magnetic fields. Keep your magnet at least 25 centimeters (10 inches) away from any of these items, and do not store magnets near such items.

Ricola

The coughing continues. Less than Friday and Saturday, but the activation still makes me cough a bit. And the coughing made my throat dry... hence, the Ricola. Tastey little drops from Switzerland. Although the maker says that it is the mountain herbs that sooth the throat, I suspect that it is the menthol... just like Vicks and the other losenge makers use. In any case, I use the Ricola. Highly recomended.

Settings adjusted. Increased buzzing...

I got the VNS turned up. It is now sending a charge of 0.75 mAmps for 30 seconds every 1 minute and 40 seconds. It feels pretty strong when it goes off... kinda like a big honey bee in my throat. This feeling along with a 5 second feeling of throat constriction each time it activates. So far it is more noticeable than my last setting, but that is to be expected. Hopefully I will adjust to this setting soon. They upped my magnet settings as well. When I activate it with the magnet, it feels like a hornet on steroids buzzing in my throat... but, it is shocking, but tolerable.

As this new setting is pretty noticeable, I hope it does not cause any sleep problems. Some people report insomnia or sleep apnea side effects resulting from the VNS.

VNS settings changes tommorow

Tommorow I go in to have my VNS (model 102) settings changed. I belive Nurse Cindy will be upping the charge a notch. I have to admit that I am a bit nervous. Last time I was in, the charge really buzzed a lot and made my throat constrict. I hope it is not as bad. I think that in two weeks I have managed to adjust to the stimulation to the throat quite well, it does not make me cough as much anymore and the buzz sensation is only mildly distracting.

Tommorow I will post the settings and the effects of the stimulation to the Vagus nerve.

Flashing subway lights

Some people have trouble with flashing lights triggering epileptic seizures. My advice: avoid the subway. When I was in NYC, the flashing of the subway as it cruised by the platform tended to make my eyes flicker. I have never had problems with flashing lights causing seizures, but don't really want to push my luck. So after becoming somewhat dizzy at a platform, I spent the remainder of my time in NYC avoiding looking at the trains.

VNS v. Airport Screening

For the record:
I just got back from a trip to New York City. When I went through the detectors, my VNS Implant (model 102) did not set off the metal detector. I placed my magnet in one of the screening tubs. It went through screening without a hitch. For anyone worried about problems with the device activating detectors, don't. I was also screened with a hand-wand when traveling to NYC. The hand wand, even ran directly across my chest, did not beep. I don't know what they use in those things to detect metal objects, but if it is a magnet, it was not powerfull enough to set off my VNS.

My VNS Experience

My VNS Experince... no!! not mine, a lady named Kim. Evidently, she decided to write about her own experinces with VNS after reading about mine here. Kim had surgery in Februrary 2006, but I won't sum up her experince for you, read it yourself!

Bzzz... Cough... Cough... Bzzzz...

2 days since I had my VNS cranked up a notch for the first time. The buzzing is barely noticeable now, but I still cough occasionally when the device sends a charge. Interestingly enough, the "side effects" from the device do not seem to be the same every time it activates.... strange.
...bzzzz

VNS - Kicked up a notch

Today I got my Vagus Nerve Stimulator settings changed to increase the amperage and the frequency of stimulation. When Nurse Cindy cranked up the charge, I got a strong feeling like a honey bee buzzing in my throat. The feeling occured directly below my adams apple. It was quite distracting and somewhat uncomfortable. After a short while I did not notice it quite so much. She also increased the settings for my magnet activation settings. The feeling I get when activating by magnet is like a honey bee on seroids buzzing in my throat. I also got a feeling of my throat constricting and a difficulty in breating. Now, 8 hours later, I still get a mild honey bee buzz, and occasionally when it activates it makes me cough.

The setting changes were pretty startling, especially since I did not know what to expect. Although I have read through all the "side-effects" that people report, the words never quite match up to the actuall feeling. I suppose one person's tickling feeling is another person's buzzing bee.

I think I mentioned in yesterday's post about the wire in my neck... you know, the one that Christa and my father said was a vein. Well, just for the record, I was right! But that tells you how noticable it is - not very.

Healing Wounds

VNS surgery scars are still healing. The one on my neck is still quite pink and slightly raised above the rest of the neck. The scar on my chest is pink and healing, but not quite as fast as the neck. The area of my chest near the Pulse Generator 102 still aches from time to time, but for the most part is not noticable. The wire is barely visible, although my wife, Christa, says that I am just imagining things and that the line I see is a tendon or something.

At the current level of electrical stimulation (0.25 mAmps) I cannot feel when the device sends a puls of electricity. According to a few other sites, this charge can be increased to as much as 12 mAmps. I have not read anything by Cyberonics yet regarding maximum stimulation setting.

My.Epilepsy.Com

MyEpilepsy.Com is a epilepsy community website. I took a brief look at it and it appears interesting. Not sure how much data there is, but may be a good place to seek support from others suffering from seizures.

Seizure Disorders/Epilepsy - Defined

The Neurology Channel has the best "overall" definition I have found for Epilepsy. Here is the overview:

Epilepsy is a recurrent seizure disorder caused by abnormal electrical discharges from brain cells, often in the cerebral cortex. It is not a distinct disease, it is a group of disorders for which recurrent seizures are the main symptom. Different forms of epilepsy are either secondary to a particular brain abnormality or neurological disorder, or are said to be "idiopathic," without any clear cause.

Normally, nerve transmission in the brain occurs in an orderly way, allowing a smooth flow of electrical activity. A seizure occurs when these neurons generate uncoordinated electrical discharges that spread throughout the brain. This can occur with both normal and abnormal nerve cells.


This is where the fun starts... so how do doctors & chemists "fix" the problem. The drug approach is to "mess up" the chemistry of your brain further in order to hopfully make the electrical discharges behave. The VNS approach is to blast your brain with more electricty and hope it makes the uncoordinated electricity calm down or at least get your head used to it. The brain surgery method where they chop the link between the two sides of the cerebral cortex... well, that seems just crazy, but for some people, evidently it helps.

Luckily, there are still a lot of doctors with crazy ideas about putting wires in your head or zapping your brain with radio frequencys... more to come.

Epilepsy v. Good Old Days

It makes me somewhat angry when I hear people talk about the "good old days" ... as if it was somehow a mystical time of bliss ... and maybe it was - for healthy people. Without modern medicine & sterile surgery techniques, I would have died at age 11 from Appendicitis... on the off chance that I would have made it through that, my epilepsy would probably have killed me by now. One can only fall down and smash their head so many times. Imagine me in the "good old days" - 1600 A.D. No doubt that while washing my deer-skin cloak by the stream, I would have had gran-mal seizure and fallen into the creek, smashed my head on a rock and drowned. (hmmm... maybe it isn't modern medicine, but the top loading washing machine that has saved me...)

In any case, the good old days, would not have been so good for me... or anyone else that needs meds & surgery to survive. This is of course assuming that a lot of the medical issues facing us are not a direct result of modern technology. Such as "fast food". An epilepsy blogger from Croatia, Jurica, recently found some research indicating that a diet high in vegetables can reduce seizures (imagine that). He has been trying out this high vegetable diet and documenting it in his blog, Epilepsy Cronicles. Even after only a few days, he has cited improvement.

I may give this diet a shot, I'm sure it would be good for me, but I won't go vegitarian, I've got to have an ocassional ribeye steak from good-old American corn-fed cattle. And maybe a rack of pork-ribs, and a pizza piled high with cheese & pepperoni... ug ... vegetables...

Vns Message Board

The Vns Message Board is a group message board for people that have had a VNS, thinking about getting a VNS, or caring for someone with a VNS. Some inspiring stories... some disturbing as they document very bad side effects resulting from the device.

As for me...

Made it through the weekend. It has been a little more than three weeks since my VNS surgery. My stamina is still about %80, and if I do alot of repetitive movement with my left arm, my chest will get sore. Shaving is still a pain in the neck, literally. If you get the blade too close to the wound, it hurts.

I had a technical situation with the blog on Friday... made me think a lot about censorship. More on that later.

The Known Causes of Seizures

I found this interesting blog on epilepsy (I know... you are probably saying to yourself, "he found another one... woop-de-doo". Don't worry, there are not that many epilepsy bloggers out there, so it should not take more than 3 or 4 months to find them all.) This one is a bit different than most. The blogger, Kevin, appears to repost, without comment, any articles he can find on epilepsy - there are not any references, so I could not tell from where they were taken, but the writing style & length of articles is similar to what you would find in a newspaper. If you like concise human interest stories and informative articles, check it out - The Known Causes of Seizures

Get Inspired

For anyone that can't wake up and catch the sunrise... I hope you enjoy this photo from a nearby farm.