VNS Therapy?

[kimberlymeg]

If you read my info you can see my frustration with medicine. I would honestly like to try just the VNS therapy w/out medication and see if it helped me. The most frequent I have ever had seizures is one every 1-2 months. After getting off medicine a second time at the age of 18, the side effects slowly disappeared and I was no longer having seizures. I started to feel normal again. Until, at the age of 20, I had a seizure which I think was brought on by a lack of sleep. I was up until about 5am studying and went to bed 5-8:30am. Had a seizure after I woke up. I'm extremely hesitant to get back on any kind of medicine because I have tried two that helped the seizures but had me suffer so many side effects.

Has anyone here tried VNS therapy as their only treatment for Epilepsy? If you know anything related to VNS therapy I would love to hear it.

[epileric]

If you're having troubles & frustrations with your meds then you're definitely in the majority here. Personally I'd check out other treatments Like the ones here http://www.coping-with-epilepsy.com/...ive-treatments. A lot of people have had good things to say about Neurofeedback but it's best to find what works best for you.

There is a forum for people with a V.N.S. If you're looking for opinions from people who have one. http://www.vnsmessageboard.com/

Once more, welcome to CWE.

[Birdbomb]

VNS is an ajuntive therapy. It is meant to be used WITH medication, not replace it. Although some people have been able to reduce or even eliminate their medications, it doesn't happen very often.

Surgery should be looked at as a LAST resort. Over 1/3 of those implanted will have side effects and issues much worse than before being implanted. Many of these issues are life changing and quite painful. The best thing I can tell you is RESEARCH, RESEARCH, RESEARCH! Get beyond the marketing puffery and talk to those with VNS both good and bad sides. Download and read both the Physician and Patient Manuals.

And like Epileric says, click on the logo in my signature and visit my site. It's been around for almost 6 years and all the members have or had VNS so they speak from experience.

[Meetz1064]

Birdbomb. She does know what she's talking about. And check out the list of alternative treatments that Epileric gave you. There's some really good alternatives in that list.

[kimberlymeg]

Thankyou for the advice . Its going to take a lot of time, research, and discussion to decide what treatment I should decide to try.

[Cint]

VNS Surgery should be looked at as a LAST resort. Over 1/3 of those implanted will have side effects and issues much worse than before being implanted. Many of these issues are life changing and quite painful. The best thing I can tell you is RESEARCH, RESEARCH, RESEARCH! Get beyond the marketing puffery and talk to those with VNS both good and bad sides.

I had the VNS surgery as a last resort and it has been good for me. Sure, the 10 meds I tried are a frustration to deal with, but then so are the seizures, the burns the many bruises and so was the unsuccessful brain surgery. Much more life changing and painful than the VNS was for me. One seizure every 1-2 months would have been a godsend for me, even with my getting enough sleep and taking meds. I was having 4-5 seizures a day. I had my first VNS in 1998 and replacement in 2002. I have shortness of breath once in a while and wheezing sometimes, but that is about it as far as side effects.

[Bernard]

Hi kimberlymeg, welcome to the forum.

I'd suggest trying a few other things (diet[s], neurobehavioral techniques, neurofeedback, etc.) before going for surgery. See here:

Proactive Prescription for Epilepsy

[kimberlymeg]

Thankyou , I'm considering trying a change in my diet like the modified atkins under my doctor's supervision. I'll need to discuss it with my neurologist first. I've been checking out all of the links you have been providing. Thankyou, they have been really helpful.

[NancyB]

Kimberlymeg, Hi, my name is NancyB. I wanted to tell you about my familys' personal experience with the VNS device. Several members of my family, including me, have epilepsy. The rest of us take medicine for ours, but my younger sister, Judy, wanted to try the Cyberonics' vns device. She was a registered nurse and thought it would be easier if she didn't have to worry so much about having a seizure on the job. She got the device implanted on Feb. 26, 2008 and by the end of March she was institutionalized in a psychiatric hospital. Three times after the implant she tried to take her life. She became a person even her own parents didn't recognize. That alone was bad enough, but her seizures became so severe AFTER the implant that twice she needed to be placed on life support. She remained in a psychiatric hospital for almost an entire year diagnosed with what the doctors were calling a "psychosis", even though no other family members have ever suffered from anything like this. You have to understand something. My sister is a very strong born again christian, so am I, and she never drank or cursed or anything like that. After that implant, she became a person that was so totally against everything she believed in that I knew in my heart this device was causing her change. Her neurologist tried to tell us that that was impossible, the device could not alter a person the way it had, but I knew differently. I began researching the device and discovered that psychosis and worsening seizures are two very well documented possible side effects of the device. I called her neurologist in N.Y. and demanded they remove the device, and he again tried to tell me it was not the device. I had to hire a lawyer, who then called the doctor and demanded they remove the device. Within two weeks of them taking that device out she was back home. They changed her seizure medicine, and she hasn't had one since. Sadly, though, she will never work again. She is now, at the age of 44, on permanent Social Security Dissabillity. Because of this she might lose the home she worked so hard to get, and her poor little 10 yr. old daughter is relentlessly being teased at school because her mommy was in a mental institution. My sister graduated from a Christian College that she was able to attend on a basketball scholarship, before going on to nursing school. If she was in any way "psychotic", I think someone would have noticed it long before that. She also worked full time as a registered nurse up untill the implant. I have been checking the Maude Data Base daily to see how many people this device is destroying, and every single day the amount of deaths that are linked to this device goes up, as well as people being institutionalized after the implant. Go on the Maude Data Base yourself, and you will see what I mean. Make yourself a little chart and keep track of the numbers of deaths and injuries caused by this device for a few weeks, and then make your choice. I think I already know what it will be. Feel free to write me back at anytime. Good luck to you, Kimberlymeg!

[Cint]

Nancy,

I am truly sorry to hear of your sister's bad experience with the VNS.

Had she tried all alternatives before the VNS? I don't understand why so many want to go off medication because of side effects to try something else. There are risks to all medications/surgeries.
Did they take your sister off all medications immediately after the VNS surgery, causing psychosis? What were the currents/settings initially of the VNS for your sister? If they aren't set properly for the individual, that can cause bad seizures. Was your sister seeing an epileptologist (specialist in epilepsy) or just a plain neurologist?
I have to see a well versed specialist to make sure my VNS is working properly along with medications, otherwise who knows what could happen. And as I said in my earlier posting, I only had the VNS as a last option, AFTER an unsuccessful brain surgery.

IMO, VNS should only be sought as a last resort.

[NancyB]

Good morning. My sister had tried many medications. She had access to the finest neurologist in the country since she lives in the N.Y.- N.J. area. What I really had a problem with, though, is she was admitted to this psychiatric hospital with what were being told was some kind of a complete breakdown with no clear sense of origin. My sister is in her 40's and never had any kind of psychiatric issues. She was working full-time as a registered nurse in a very busy N.Y. hospital, and I think someone there would have noticed if she was psychotic, don't you? She had absolutely no problems UNTILL the implant. My mother noticed the difference immediately. She later said that the person she was talking to was not her daughter. She didn't even recognize her. Still, for several months, we did not make the connection of her sudden problem to the device, mainly because we were told that the device could not cause those kind of problems. It was then, that I discovered the Maude Data Base system and began researching the complaints filed against this companys' device by both patients and doctors. There are so, so many, and they are increasing every single day. I began to syudy the individual reports and found that psychosis, worsening seizures and death are listed among the possible side effects. In almost every Maude report that involved a death, it stated that although it was not belived that the vns caused the death, it could not be ruled out. Then I also noticed that none of these device were being explanted and sent to an independant testing firm to see if they were the cause of death. That is one thing that I want to change. I want every device involved in a death, to be explanted and tested by a firm that has no financial connection to Cyberonics. Untill that is done, it will remain a matter of he-said-she-said.

[Birdbomb]

Hi Nancy, welcome and thank you for your input. I was wondering how Judy has been.

[NancyB]

Birdbaum, HI!!! How have you been? It took almost an entire year of fighting with Judys' neurologist who kept insisting that her problems, physical and psychological, were in no way connected to the device, that I contacted a lawyer. I did so much research on that device, reading every single personal story I could get my hands on, throughly studying the entire approval of the device, including the approval documents, studied their court litigation file H-05-2121, I mean, you name it, I read it. I gave all that information to the lawyer. Up untill that point the doctor didn't really want to remove the device because he said it was turned off and couldn't hurt her. My mom was furious and demanded he take it out, so when he got the phone call from the lawyer, I guess he knew we meant bussiness and withinn two weeks the device was out and Judy came home. She's now disabled for the rest of her life because of it and her little girl was being teased so bad at school once word got out that her mom was in a "mental institution" that my parents had to pull her out and put her in private school. Judy is still trying to adjust. She's very embarressed about the whle situation and the fact she was in a "mental institution". It's been very hard for her to accept, but she's trying. We all are, but this whole ordeal had put so much stress on my family that there were several bonds between brothers that were broken and will never be fixed. That's really sad. What really makes me sick, though, is that all they had to do is change her medicine. They did that when she came home, and she hasn't had a seizure since. Too bad there isn't medicine to remove the inside scars.

[Cint]

. What really makes me sick, though, is that all they had to do is change her medicine. They did that when she came home, and she hasn't had a seizure since. Too bad there isn't medicine to remove the inside scars.

Please help me to understand, if that's all they had to do is change the medicine to control seizures, why did she have the VNS surgery then?

After I had brain surgery, after a year, my seizures came back worse and I went into a deep depression and was labeled "crazy" because of the bad seizures that sometimes would make me "psychotic" and the depression.
When the VNS was available in 1998, I took advantage because I needed relief after trying the brain surgery, 10 meds, all to no avail. It was the brain surgery that made me disabled and "crazy" and to this day I still have a seizure on occasion.

I'll never understand why people have the VNS surgery in the 1st place, only to find out that medications will control their seizures.

[NancyB]

My sister was led to believe that this device would assure her that she had protection against having another seizure. She would not ever have to worry about taking her medicine, that this device would be a guarentee that she would not have a seizure. This device, in her case, did just the opposite. She began having grand-mal seizures, and seizures with such frequency and intensity that she had to be put on life support. It truly is a miracle that she is alive. I've often wondered, but have no proof of, if doctors get some kind of commission if they sell one of these devices to a patient. Her neurologist did not return my calls or my parents calls untill I contacted the lawyer. And then the doctor had the nerve to tell me that he had no idea that she was even having a problem with the device. I called him a flat-out liar. If he thinks for a second that a patient can be admitted to a hospital with uncontrollabe, life=threatening seizures and that hospital is not going to contact her neurologist to find out what's going on, then its' HIS brain that apparently needs a little stimulating. Then for months and months he kept insisting it was not the device causing the problem, but that she's had this "psychosis" before the implant, and I said that if that was the case it was amazing that she could have worked so long as a registered nurse without anyone noticing she was psychotic, that and the fact that according to the physicians manual, anyone with a pre-exixting psychosis is not a suitable candidate for vns. So he went back to the original story and admitted that it was put in to treat her seizures. Of course, by that time, we were able to retrieve her hospital records and in them it stated in his own handwriting that she had the device put in for seizures. I have seizures, but mine are very well controlled with dilantin. I can't imagine how scarey it would be to not have that assurance and never know when the next one is going to hit, or where you'll be, or who's going to see it and will you do something embarressing or what, you know? You become desperate for an answer and will believe almost anything, especially if it is being sold to you by a man with such authority. It's sad, but I think surgery these days has become such common-place that noone really takes them as seriously as they used to. The operating room has become one long assembly line.

[Cint]

My sister was led to believe that this device would assure her that she had protection against having another seizure. She would not ever have to worry about taking her medicine, that this device would be a guarentee that she would not have a seizure

Did her doctors tell her this or did the Cyberonics rep tell her this false information? When I had the VNS, I was never told that I would go off medications and would be completely seizure free. If the neurologist told her this, then they need to be held responsible, too.

This device, in her case, did just the opposite. She began having grand-mal seizures, and seizures with such frequency and intensity that she had to be put on life support.

Was she still taking any medication(s) at this point? If they took her off all medications abruptly, then of course, she will go into Tonic/clonic seizures. How did they program the VNS, initially? Did they do the regular cycling?

It truly is a miracle that she is alive. I've often wondered, but have no proof of, if doctors get some kind of commission if they sell one of these devices to a patient.

I believe they do get some kind of commission.

I can't imagine how scarey it would be to not have that assurance and never know when the next one is going to hit, or where you'll be, or who's going to see it and will you do something embarressing or what, you know?

Very scary!! Been there, done that. Had my very 1st grand mal seizure on my way out of the shower, fell and hit the hot water and ended up with 1st and 2nd degree burns on my arm and back. Ugly burn scars to look at now.

My two grown children have witnessed many seizures when they were young and they thought they're mommy was dying. Many in the community we used to live in knew of my condition, the local cops knew, the fire dept. knew, so when I had a grand-mal in public, many knew NOT to call 911!! My children's friends knew also, so they all knew what to do if/when they witnessed me having a seizure. This happened after brain surgery. For me, it's life, something I have had to learn to deal with. I'm not dead yet!

[NancyB]

You know, I'm not sure if she was still on medicine or not, nor am I sure if she actually spoke to anyone at Cyberonics. I can find that out, though. I really can't say either that they are the ones to blame, at least not in my sisters' situation. Her neurologist who recommended the device told me that he had no idea that she was having a problem. I knew that was a lie because both my mother and myself called him and left messages on his answering machine and spoke to his receptionist. It was not untill I called up the surgeon and litterally gave him hell that he called me back in less than two minutes. That's when he started claiming that he had no idea that she was having a problem, and then apparently he called up the neurologist, who then very quickly called me back. He too, claimed that he had no idea that Judy was having a problem, and I told him to just cut the crap. Then the lawyer called him up and it was not untill then that they removed the device, still all the while insisting that the device was not causing any kind of psychosis. So I'm guessing that it was just a coincidence that the psychosis seemed to have dissapeared after the implant was removed. Does she have emotional problems now? You bet. She's lost alot of her possesions which were sold to try to keep her house, she's lost all the animals she loved so much, she'll never be able to work again and she's ashamed by what's happened. But she is alive, and for that we are grateful. I had one mom contact me a few weeks ago who just lost her daughter after getting this implant. She also said that they are claiming that the device did not cause her childs' death, but she said she watched her daughter die and knows better.

[Birdbomb]

http://z4.invisionfree.com/VNS_Messa...4&st=360&#last

Now here are some ugly truths.

92 VNS deaths were "reported" to the FDA in 2009.

Sudden Unexplained Death in Epilepsy - *18

Unk - 50

Other - 24

*Cyberonics took it upon themself to determine the cause of death in 2 of the Sudden Unexplained Death in Epilepsy cases.

2008 was just as bad.

91-deaths

Sudden Unexplained Death in Epilepsy - 9

UNK - 55

Other - 27

Check it out for yourself.

Just fill in manufacturer name, select event type & time frame.
Ignore product problem, product class & brand name.

http://rds.yahoo.com/_ylt=A0geu8ng0lFLWsEA...AUDE/search.cfm

[Cint]

and more ugly truths:

A Review
by Jane Burford, Epilepsy Association Educator

Is it possible to die from epilepsy?

Even though the outlook for people with epilepsy is quite promising, there is an increased risk of death that is 2-3 times higher than the general population. About 40-50% of deaths of people who have epilepsy are related to epilepsy. (i)

It is important to remember that seizures themselves are rarely fatal. Death may occur because of accident directly related to a seizure, as a consequence of a seizure or ongoing seizures, from a condition that is causing the seizures, or there may be no clear cause as is the case with Sudden Unexplained Death in Epilepsy.

Some epilepsy related causes of death include:

Accidents during and after seizures, such as drowning, burns, or trauma. Drowning remains a common cause of death.
Complications from a seizure, include choking and suffocation.
Death from a condition or disease that causes seizures such as a brain tumour, Alzheimer?s disease, or stroke.
Sudden unexpected death in epilepsy (Sudden Unexplained Death in Epilepsy ? no identifiable cause)
Status epilepticus (prolonged or ongoing seizures)
Suicide rates are higher than average due to depression and issues associated with epilepsy.
It is difficult to prove any relationship between death and long term use of antiepileptic drugs. Rarely antiepileptic drugs, however, may cause fatal reactions. Generally these occur during early stages of treatment.
Rarely people with epilepsy may take intentional or non-intentional fatal overdoses of antiepileptic drugs. (ii), (iii)
What is Sudden Unexplained Death in Epilepsy?

"Sudden Unexplained Death in Epilepsy is the sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death in patients with epilepsy, with or without evidence for a seizure, and excluding documented status epilepticus, in which post-mortem examination does not reveal a toxicological or anatomical cause for death." (iv)

It refers to people who have epilepsy and die suddenly and unexpectedly, and no cause of death can be found. The risk of this happening is very rare.

Most cases involve young people with a history of generalised tonic-clonic seizures. Frequently they are found dead in bed and the post-mortem examinations may reveal focal brain lesions causing the epilepsy but the cause of death cannot be established. Many people who have died from Sudden Unexplained Death in Epilepsy have had sub-therapeutic (low) antiepileptic blood levels.

In an attempt to standardise the definition of this event, the US Food and Drug Administration (FDA) and Burroughs-Wellcome developed the following criteria for Sudden Unexplained Death in Epilepsy in 1993. These criteria are now used in most Sudden Unexplained Death in Epilepsy studies and are as follows:

The person has epilepsy, which is defined as recurrent unprovoked seizures.
The person died unexpectedly while in a reasonable state of health.
The death occurred suddenly (i.e., within minutes).
The death occurred during normal and benign circumstances.
An obvious medical cause of death could not be determined at autopsy.
The death was not the direct result of a seizure or status epilepticus.
Of note, evidence of a recent seizure does not exclude the diagnosis of Sudden Unexplained Death in Epilepsy as long as death did not occur during the seizure.

Incidence

Sudden Unexplained Death in Epilepsy may account for 8-17% of deaths in people with epilepsy.

Who is at risk?

Sex: It is almost twice as likely to occur in males than females.
Age: The incidence seems to be higher in younger adults. Most cases of Sudden Unexplained Death in Epilepsy have been observed in people with epilepsy who are in their third to fifth decade, with a higher incidence at the younger end of the age range. The average age is estimated to be 28-35 years. Sudden Unexplained Death in Epilepsy is very rare in children. (iii)

Other factors

Intellectual disability: Sudden Unexplained Death in Epilepsy is significantly more common in this group.
Excessive alcohol consumption: is a more frequent behaviour in patients with Sudden Unexplained Death in Epilepsy than in the general population of patients with epilepsy.

Seizure related risks

Seizure onset: Diagnosis of epilepsy at a young age and people who have had chronic epilepsy longer than ten years.
Type and frequency of seizures: Poor seizure control. People with frequent, severe generalised tonic-clonic ('grand mal') seizures are at greater risk especially if they occur during sleep. Being alone at the time of the seizure is also a risk factor. Seizures that are from an acquired brain injury, e.g. trauma, brain tumour, stroke, rather than seizures from an unidentifiable cause.

Medication risk factors

Blood levels: Sub-therapeutic or low blood levels of medications can increase the likelihood of Sudden Unexplained Death in Epilepsy.

Number of medications: There is a greater risk for people taking multiple antiepileptic drugs.

Changes: Any recent changes or withdrawal of medication. Forgetting to take some dosages or not taking the medication at all.

When considering the risk factors remember that just because some or more of these may apply it does not mean that someone will die from Sudden Unexplained Death in Epilepsy. (v)

Cause of death

Different events may contribute to Sudden Unexplained Death in Epilepsy in different people, and the reason probably involves a number of factors rather than one single mechanism.

Respiratory

Breathing difficulties, including airway obstruction, apnoea (cessation of breathing), and fluid in the lungs, are probable fatal events.

Cardiac

In addition, irregular heart rate, during both the seizure and in-between seizures, leading to cardiac arrest and acute cardiac failure plays an important role. (iii)

[Cint]

But then there is also GOOD NEWS, too! The VNS does work for some of us!
I'm truly sorry for those of you who it didn't work for. Then again, brain surgery isn't for everyone, either!!