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vns therapy side effects
Wed, 02/15/2006 - 10:10Topic: Complementary Therapies
I joined this site yesterday and I'm interesting in touching base with anyone who has a vns. In particular I would like to find out if anyone has experienced any unusual side effects not mentioned by Cyberonics. I occasionally experience 'tingling' in my neck and shoulder - this is actually quite unpleasant and it has been severe enough to warrant having my vns temporarily turned off. At one point last summer it felt like I was being repeatedly stung by a bee or something like that (I'm not sure exactly how to describe it). Cyberonics claims that no one has ever mentioned anything similar to this. I have been quite happy with my vns - it has helped stop many seizures once they have started, which has meant fewer trips to the ER but if this problem became really severe again I wouldn't be able to keep my vns turned on. Please let me know if you have experienced anything like this - I would like to know - Cyberonics makes it sound like I'm crazy or something. Thanks!!!
Comments
Re: vns therapy side effects
Submitted by nancyjudy on Tue, 2012-06-12 - 23:42
Nancy B Hi Emeral!Look, I'm a little confused here. You said 'when I first got it they didn't know how to use it'. Exactly whom are you referring to? BOTH the doctor and the Cyberonics rep should know this device and everything about it inside and out, and if they didn't,then they had no business even getting you involved. This company is very aware of the side effects. If you go to http://dynamic.cyberonics.com/depression/indications_for_use.asp and go down to where it says #5, it says 'Patients being treated with adjunctive VNS Therapy should be observed closely for clinical worsening and suicidality, especially at the time of VNS Therapy stimulation parameter changes or drug dose changes.' All I know isthis. My sisters' seizures became life threatening AFTER she had the implant and she became clinically depressed only AFTER she had the implant. My sister was never diagnosed with depression or been suicidal at any point in her entire life UNTILL SHE GOT THIS IMPLANT. If they did not remove her implant then she would be dead right now. Because of this device she came pretty close. She will never be able to work another day in her life because of this implant, andI can't stress that enough. She is on different medicines right now, and is doing so much better, but the nightmare that this device has caused her,her daughter, and my entire family will follow us untill the day we die. Her doctor also would not admit that the device caused all her trauma, but we saw it with our own eyes. Right now you still have the chance to 'fix' this before it gets any worse. That was an opportunity that my sister didn't have. Please, take advantage of it before it's too late
Re: vns therapy side effects
Submitted by suebear on Wed, 2012-06-13 - 01:21
The only thing I'm going to state on the factor is if you are looking for information, go to the VNS Message Board where the actual information about this item is instead of fussing around with an Epilepsy board.
It is a waste of time listening to arm chair doctors. Secondly, the VNS message board does have persons who can at least help you by providing information about the item which you can ask your neurologist.
Your neurologist is a medical doctor who is licensed to take care of your health matters. The persons on this channel do not have a medical license... remember that when you ask medical questions.
I will leave it there at that statement.
Re: vns therapy side effects
Submitted by emeraldstar on Tue, 2012-06-12 - 13:24
You know I think you are right. My husband said that since I had this VNS my seizures have become different and somewhat worse. I went into a 12 hr. seizure and they finally gave me adavan (not sure spelling) but I have lost a lot of my ability to think and I too have pains going up my neck where I need to hold tightly until it stops. I get pains in my chest. My machine is inconsistent I keep timing on it and it is never what they set it on. I have finally had the rep from vns come to explain and help with the settings but it still continues to give me problems. I still take meds, if not more. The rep says that most people get them out they go back and put them in. However I was in sales so I totally am not convince. My doc. when I first started they didn't know how to use it. I too have develop some psychosis my husband said he is about to give up hope. He said that he has lived with me a long time and these seizures are different and it started since I got the vns installed. One doc. told him it was a learned behavior,(that was when I was in a 12 hour seizure. (what they come up with when they don't know)he must of had a learned behavior seminar that week...lol Reading your info has cleared up a lot of my problems.I have lost a lot of my life and I refuse to give up the rest up. I pray everyday that God would help my lost brain cells. I am not sure if I should stop it or just remove it. Any in put! If I sound somewhat confused in expressing my info. it's probably because I am.