VNS Journal. (Ongoing thread)

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Aug 12)Nak, I agree completely. lol Well I am off to the Dr's @ 2pm today to figure out who is going to remove my VNS. (Any takers? lol) So, I will be back on this afternoon with an update. I hope everyone is well and having a great summer. -Jeff
 
Hope they can take care of it quickly...
 
Aug 13) Well hello my family! This is more than likely the last post for this journal. Since January I have been dealing with this VNS device. Finally after many attempts is finally shut down and ready to be removed.

My advice: Make sure that you do all of your research before you opt for the VNS. The side effects that they tell you may occur will occur. After surgery you will not have your normal voice, or true voice again. Again, if you are a business person, someone who talks for a living, or needs to be loud at a work site, this device is not for you unless absolutely necessary. FYI, it will not stop those with bi-hemisphere epilepsy. (Like myself.) If you have epilepsy on one half, you might have better luck. I look at the VNS as a last resort. And yes, this is only my opinion. There are many on this site with devices, and they are a life saver. It may be a miracle for you. During its trial my seizures doubled and I even had a grand mal after it was turned up. Since it has been off, my issues have dropped to a third of the episodes. As I spoke will my neuro, I told him that I am done messy with it. I am on a dosage that I can deal with. I have breakthroughs all month long, but I can handle it. As many know, after you go so long without proper diagnosis (Myself 20yrs) you really do get used to. I will go back to living my life with the usual situations. I know it sounds crazy, but I have no trouble dealing with @ 10 a month.

It is our duty as epileptics to rule the world!!!! (Just kidding lol) Its our duty to live life to the fullest. Do not stop enjoying life. Just do the research friends. And if you do go with the VNS, then I hope it truly does work out for you. I will always be here to hear your success and support you through it all, as everyone will. And if it should be a nightmare or trouble, then I will be here to support you through it.

Thank you for keeping up with me, and now I can finally visit everyone in a different forum. lol

Thank you again, and God bless. -Jeffrey T Brown.
 
Aug 13)
It is our duty as epileptics to rule the world!!!! (Just kidding lol) Its our duty to live life to the fullest. Do not stop enjoying life. Just do the research friends. And if you do go with the VNS, then I hope it truly does work out for you. I will always be here to hear your success and support you through it all, as everyone will. And if it should be a nightmare or trouble, then I will be here to support you through it.

Thank you for keeping up with me, and now I can finally visit everyone in a different forum. lol

Thank you again, and God bless. -Jeffrey T Brown.

Sorry the VNS did not work for you. But as you said, for some of us with epilepsy (PLEASE, DON'T CALL US EPILEPTICS), the VNS was a last resort. Brain surgery didn't work, numerous meds didn't work, but the VNS has worked. I had my 3rd VNS battery replacement back in April of this year. And that was after I had totaled my car back in December of last year. So far, I have been seizure-free ever since I had the new battery. Now I can enjoy my life to the fullest, whereas, before the VNS I was having numerous seizures a month and had severe depression on top of it. It does cause shortness of breath for me and changes in my voice when I speak, but that is the only detrimental side effects that I experience.

Thanks for keeping us posted.
 
Sorry Cint, but I am an epileptic. Maybe if you call us shakers or something like that I would take offense, but being epileptic is who I am. And I am content.
 
Sorry Cint, but I am an epileptic. Maybe if you call us shakers or something like that I would take offense, but being epileptic is who I am. And I am content.

Ok. That is who you are. I am not.
 
Apparently it is wrong to use the word "Epileptic". So in anything I have said, I meant epileptic to the millions of people except cint, she's not epileptic. I thought that in "MY" journal, it was about how the experience effected "ME". I am sorry to everyone, but I refuse to listen to someone that pushes their great experience on someone else. I had a Dr talk me into it. The last thing I want to hear from you cint is how awesome it worked for you. My family and I have been going thru hell, but we always talk about how wonderful your experience is. You have been nothing but ignorant and rude with me from the start. So, in closing, since I seem to be so offensive, I will take leave of this site. Thanks for the great harassment cint. I appreciated it.
 
Wow! I see NO harassment in this thread. Cint was simply stating that it does work for some. I'm sorry it didn't work for you, but you are making gross generalizations here. I am meeting with my Dr. and a VNS specialist in a week. Your severe reactions to VNS are very concerning and have raised many more questions I intend to ask during the meeting. I thank you for being so open and honest. I have not found a single med. so far, that controls my seizures, so I am pretty desperate at this point. However, I'm also a mother and I need my voice. I will be entering this meeting much more cautiously now!
 
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