VNS Therapy?

mglynn2

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I don't know, I'm not sure. But I was taking 4 medicines before I got the implant, then my doctor slowly took me off depakote because I was doing okay but that didnt work for me so now I may be going on another different medication.
 

NancyB

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So, in other words, you will be on the exact amount of medicine that you were on BEFORE the implant. What do you think would have happened if, instead of your doctor installing the implant, he just took you off the depakote, and changed that first, before you did all this. With my sister, they also had her on all kinds of medicine before the implant, but none of those ever almost killed her. It was the implant that almost took her life. Now that the implant has been removed and her medications have been changed, she's been fine as far as the seizures go. She will just be on disabillity for the rest of her life. THAT is what the implant did for her. Mglyn2, if you ever have any questions, feel free to contact me at any time. I am not a doctor, but I have done some very intense and thorough research on this device and might just be able to help. I'm just trying to save another human being from going through hell. Just remember that, okay? NancyB
 

DavidLM

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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.
I have and it has worked great. I was only having nocturnal seizures 3 yrs. ago and was on medication for that but then I started having complex partials during the day so I had to stop working. Things got worse and medications stopped working so VNS was my only option and it has worked great. No more seizures. I'm still on medication but it's fine with me. I'm basically a freak because it normally just controls seizures, to stop them completely.
 

NancyB

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My sister tried VNS and it nearly cost her her life. If your reason for even considering that device is because you think you don't have to take any more medicine, your wrong. Many people with the vns device srill take meds. When my sister got hers it made her seizures so bad, even with adjusting the device, that she spent almost an entire year in the hospital and is now on permanent disabillity. I stay in contact with a mom who watched her child die from a seizure after getting that implant. I also stay in close contact with another mom who almost lost her child. but was able to get the device out in time. This device is NOT the miracle you are seeking, and it most assuredly could end up being the nightmare you will never forget.
 

Bernard

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A lot of VNS patients report that the VNS helps shorten seizure intensity/duration and post-ictal recovery periods even when it doesn't reduce seizure frequency or reliance on AEDs.
 

oclare1

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I have tried every med that's available not one worked. I was diagnosed in 1996 with intractable temporal lobe epilepsy. Right temporal lobectomy in 1999. After the surgery I had tonic clonic and complex partial. I spent three years in a nursing home. Had VNS implant 2005. Still having seizures and taking three meds.
 

rtappy

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Last resort only please listen

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.
My granddaughter was born with hydrocephalus and had seizures as a result of the shunt placement. It took about a year to get her seizures some what controlled. She still had them a couple of time a month until the last 6 years they started getting worse. The VNS was place a year ago in efforts to slow the cluster seizures down. Now we know the reason for the increase was hormonal and could have been addressed another way. A little over two weeks ago she started seizing and was unresponsive to the magnet piece that you swipe to slow and halt. She passed away after 2 cardiac arrest 2 days before her 22nd birthday. After her passing I googled VNS and cardiac arrest there are many cases. So again use as a last resort it does work well for everyone.
 

rtappy

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My granddaughter suffered from seizure disorder her entire life, due to the type of placement with a shunt. She started have clusters which now we know was hormonal. She got her VNS last year and passed away this year after 2 cardiac arrest episodes. If you are female and are experiencing cluster seizures check to see if they are due to a rise in hormones related to menstruation before you get a VNS. Just trying to share what the we wish would have been shared with us. She will be dearly missed.
 

Nakamova

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Thank you for letting us know rtappy, I'm so sorry to hear about your granddaughter.
 
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