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thoughts @ VNS and Feeling sorry

Thu, 03/24/2005 - 18:51
Hi there, I am new to the vns in that I had it put in last September, Then had complications with loosing my voice for a long time. Thought I would remove the VNS. Now 6 months later I still have it and decided to turn it on due to an increase of seizures. I have intractable epilepsy. Have for 36 years. Always will.So two weeks later It was adjusted, I had bad side affects from the settings, so now it is at a level I can handle, yet I do not know if it will help with seizures as it is a a low setting, as my body is quite sensitive. Yet this AM I had a seizure tried the magnet and it is uncertain if it worked or not. Now I feel like I may need to carry it with me and I know I fumbled trying to get it I do not want to get so focused onthe magnet. If I drop it it might break.So I hesitate to try to carry the magnet with me for the fact that I would fumble and possibly drop it as I do not want it on my wrist, too heavy. Does any one feel this way?Lastly Does anyone who has a seizure feel like they need to apologize following a seizure for inconveniencing the people who are with them. I live someone who loves and deeply cares about me but I feel I need to apologize. I do not know exactly why. Look forward in hearing from some of you. Thank you for being there and relating!!

Comments

RE: thoughts @ VNS and Feeling sorry

Submitted by batman on Mon, 2005-03-21 - 17:57

Cedar,

I have epilepsy myself and many years ago was informed about the VNS. But after hearing just a few things here and there, I said to myself that there is no way that I'm going to get this implanted in my body. Primarily because of the x number of years of having to get the battery changed, and typical routine item recalls.

Anyway, I am a member of several other online support groups, and on one [BrainTalk Communities - http://brain.hastypastry.net/forums/] someone replied with a weblink to the VNS Message Board. It alone, is a online support group for people with the VNS. Joining registration necessary for it too.

http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

I wish you the best of luck with all that's still in your future. Just hang on tight.

Bruce CJ

Cedar,

I have epilepsy myself and many years ago was informed about the VNS. But after hearing just a few things here and there, I said to myself that there is no way that I'm going to get this implanted in my body. Primarily because of the x number of years of having to get the battery changed, and typical routine item recalls.

Anyway, I am a member of several other online support groups, and on one [BrainTalk Communities - http://brain.hastypastry.net/forums/] someone replied with a weblink to the VNS Message Board. It alone, is a online support group for people with the VNS. Joining registration necessary for it too.

http://s4.invisionfree.com/VNS_Message_Board/index.php?act=idx

I wish you the best of luck with all that's still in your future. Just hang on tight.

Bruce CJ

RE: thoughts @ VNS and Feeling sorry

Submitted by 38benny on Tue, 2005-03-22 - 16:12

HEY THERE... number one - The VNS isn't everyones cup of tea... I love mine - but thats just me - I don't mind the voice change or any little "problems" that people say they have. It helps my seizures go "bye bye birdie" - and thats just fine by me - so hey cool.

BUT ... on to what you were saying about appologizing for having a seizure - THATS ME - all the time - I'm always told "why are you saying you're sorry its not your fault" but I still feel like I should take ownership of the problem - I mean the seizure did come out of my body - right? But then I look at the other side of the coin and say "you know - their right - its the little creature torturing me inside... I didn't do it on purpose... its not like stealing a cookie from the cookie jar when you were a kid - so don't worry about it.  Just take a deep breath and let the situation go into history like it didn't happen.  Others will forget about it... maybe you should too. Thats what I had to learn.  Otherwise you will be beating yourself up over something you have absolutely no control over. And that my friend is never a good thing.

JoAnne

HEY THERE... number one - The VNS isn't everyones cup of tea... I love mine - but thats just me - I don't mind the voice change or any little "problems" that people say they have. It helps my seizures go "bye bye birdie" - and thats just fine by me - so hey cool.

BUT ... on to what you were saying about appologizing for having a seizure - THATS ME - all the time - I'm always told "why are you saying you're sorry its not your fault" but I still feel like I should take ownership of the problem - I mean the seizure did come out of my body - right? But then I look at the other side of the coin and say "you know - their right - its the little creature torturing me inside... I didn't do it on purpose... its not like stealing a cookie from the cookie jar when you were a kid - so don't worry about it.  Just take a deep breath and let the situation go into history like it didn't happen.  Others will forget about it... maybe you should too. Thats what I had to learn.  Otherwise you will be beating yourself up over something you have absolutely no control over. And that my friend is never a good thing.

JoAnne

RE: thoughts @ VNS and Feeling sorry

Submitted by angel_lts on Wed, 2005-03-23 - 10:10
I have the VNS and I am so glad I have the magnet and wear it on my wrist. I sometimes fumble with it, that is if the seizure is bad. My children and husband take over then. I have magnets all around my house. What is the sense in having the VNS if you are not going to wear the magnet? Mine is shut off, but I can turn it on when needed by swiping it across. I dont apologize to my husband or children, they understand. Your boyfriend should be very understanding if he has been living with you long. You should not apologize to him. I had apologized to some people at my husbands work and I should not have. It is not like we do it on purpose to get attention or something. Even when I apologized to them I felt funny doing it.http://health.groups.yahoo.com/group/EpilepsyApproach/Lisa

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