Catavenger
New member
As I have posted before I have epilepsy that is not well controlled. This is caused (mostly anyway) from a closed head injury sustained when I wrecked my truck. I have the large seizures, grand-mal which are now called tonic-clonic. Those are the classic seizures where a person just collapses. I also have the smaller seizures which I suppose were called petit-mal now they are called simple partial seizures (SPS).
During those I don't collapse but I feel really weird. Some of those can can also be pretty bad. In my case (probably because of the area of my brain that was damaged) I feel like I am going to vomit. I also have absence seizures where I don't act normal but can't remember what has happened afterwards.
I also have short (and some long) term memory loss and find it hard to concentrate. I naturally can't drive, swim, ride a bicycle etc. I can't work. I am on disability.
When I have a grand-mal seizure and collapse people naturally freak out and they call the paramedics.
I even have several things that say I have epilepsy. I made own tag on a lanyard with info. such as an emergency contact number. I usually come out of these in a few minutes and am groggy but able to function. I mostly want to sleep for several hours afterwards.
Because of seizures (besides my medication) I have had an implant for a Vagus Nerve Stimulator (VNS). The vagus nerve is a main nerve that leads to the brain. The unit sends a pulse to the brain. Since the battery is built in to the unit (I'm on my second) the whole unit is replaced when taken out.
The unit needs to be tested and adjusted as to the number of pulses per hour it gives and to the intensity of pulses. This somewhat controls my seizures (at least I don't have as many).
Having the operation and the cost of the unit is very expensive. Last I heard around $ 30,000. So they are still pretty rare. The VNS can be manually made to activate with the use of a special small magnet a little larger than a wrist watch. I was given 2 after the surgery. 1 was on a clip the other on a band. In a very short time I lost the 1 on a clip and had to get a replacement. Since the wrist strap on the magnet is just a band with Velcro on it I made my own out of a cut down pet collar. The paramedics mostly don't know about it and thus don't manually start the VNS with the magnet.
My present neurologist doesn't have the training and special equipment to test and set the VNS.
Because no neurologists on my insurance plan can adjust it my primary care physician got special permission (for lack of a better word) to send me to a neurologist who can adjust it and have my insurance pay for it.
I went to him today. He said that the VNS was basically off. He joked that the good news is that means the battery still has a full charge. So he set it up REAL high at first, think stabbing pain from my back to my chest. He lowered it but it still hurts bad. It also makes my voice hoarse. There is a way I can turn it off by using a the magnet that manually activates it. If I hold that magnet over it the VNS will remain off as long as I hold it there. I suppose if need be I could even duct tape it there or something. So far I have endured all day. I don't know how well I will sleep but since the SPS wake me up since I have them even while asleep maybe when I get used to it I will sleep better.
My insurance is supposed to pay for 2 visits to this neurologist. He said that by the time of my next visit a month from now I should be used to it and he plans to crank it up even more. since this insurance is a supplement to Medicare they will pay some of the cost of the visits.
I have an appointment next month to see a kind of broker to get a different insurance plan for next year. If our elected king Obama had had the Obamacare written in a better way maybe all insurance plans would be accepted (I.E. have them pay what they need to be paid) by all doctors? I don't know. I am not a doctor, lawyer, politician or a C.E.O of an insurance co. I am just one of the victims, oh sorry maybe that is patients?
Wish me luck.
During those I don't collapse but I feel really weird. Some of those can can also be pretty bad. In my case (probably because of the area of my brain that was damaged) I feel like I am going to vomit. I also have absence seizures where I don't act normal but can't remember what has happened afterwards.
I also have short (and some long) term memory loss and find it hard to concentrate. I naturally can't drive, swim, ride a bicycle etc. I can't work. I am on disability.
When I have a grand-mal seizure and collapse people naturally freak out and they call the paramedics.
I even have several things that say I have epilepsy. I made own tag on a lanyard with info. such as an emergency contact number. I usually come out of these in a few minutes and am groggy but able to function. I mostly want to sleep for several hours afterwards.
Because of seizures (besides my medication) I have had an implant for a Vagus Nerve Stimulator (VNS). The vagus nerve is a main nerve that leads to the brain. The unit sends a pulse to the brain. Since the battery is built in to the unit (I'm on my second) the whole unit is replaced when taken out.
The unit needs to be tested and adjusted as to the number of pulses per hour it gives and to the intensity of pulses. This somewhat controls my seizures (at least I don't have as many).
Having the operation and the cost of the unit is very expensive. Last I heard around $ 30,000. So they are still pretty rare. The VNS can be manually made to activate with the use of a special small magnet a little larger than a wrist watch. I was given 2 after the surgery. 1 was on a clip the other on a band. In a very short time I lost the 1 on a clip and had to get a replacement. Since the wrist strap on the magnet is just a band with Velcro on it I made my own out of a cut down pet collar. The paramedics mostly don't know about it and thus don't manually start the VNS with the magnet.
My present neurologist doesn't have the training and special equipment to test and set the VNS.
Because no neurologists on my insurance plan can adjust it my primary care physician got special permission (for lack of a better word) to send me to a neurologist who can adjust it and have my insurance pay for it.
I went to him today. He said that the VNS was basically off. He joked that the good news is that means the battery still has a full charge. So he set it up REAL high at first, think stabbing pain from my back to my chest. He lowered it but it still hurts bad. It also makes my voice hoarse. There is a way I can turn it off by using a the magnet that manually activates it. If I hold that magnet over it the VNS will remain off as long as I hold it there. I suppose if need be I could even duct tape it there or something. So far I have endured all day. I don't know how well I will sleep but since the SPS wake me up since I have them even while asleep maybe when I get used to it I will sleep better.
My insurance is supposed to pay for 2 visits to this neurologist. He said that by the time of my next visit a month from now I should be used to it and he plans to crank it up even more. since this insurance is a supplement to Medicare they will pay some of the cost of the visits.
I have an appointment next month to see a kind of broker to get a different insurance plan for next year. If our elected king Obama had had the Obamacare written in a better way maybe all insurance plans would be accepted (I.E. have them pay what they need to be paid) by all doctors? I don't know. I am not a doctor, lawyer, politician or a C.E.O of an insurance co. I am just one of the victims, oh sorry maybe that is patients?
Wish me luck.
