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VNS clearly not for everyone!

Tue, 04/19/2005 - 18:10
I had to post this here as I posted in the General Folder but I find this a good place this. I had the VNS implanted last Fall, lost my voice for 8 weeks due to vocal cord paralysis, once back I could tell that my voice/throat were far from being thealed . It left me very uncertain I would ever turn it on and so 6 mnths after having more seizures, I had it set at the lowest setting, we increased it slightly and had to return the setting to the lowest possible as I was too sensitive to it. I was choking,hoarse,not sleepy well,had an overall feeling of listlessness my cognitve functions were cloudy and extreme fatigued all of this is unusual for me.Over the 5 weeks that I had the VNS on, my seizures increased from a norm of about 4-5 a month to having 18 in a five week period, something I have ever experienced in 36 years of Epilepsy. I could not tell you it was solely because of the VNS and will maybe never know. So on tuesday of this week I had the VNS turned off, since then in tow days time others have noticed I am back to my real me and many of the above symptoms I was feeling are reduced, gone or getting much better. It is like day and night. I truely feel like a different person. I now feel certain I will never use it and have the battery pack removed. I feel it important to say here that for some it is a wonderful improvement over the seizures they are having. For them I truely am happy and wish I could have been one of those. but I know there are many unsure if it is right for them or how it could impact them. SO as an advocate of why it is important to know all you can both the pros and cons of this options . Which I honestly can say I did not know enough and for this I regret it greatly. Plus knowing human stories of what happens for others.May each of our Journeys be lightened by our proactive learning. Best to all out there!

Comments

RE: RE: RE: RE: RE: RE: VNS clearly not for everyone!

Submitted by Cedar on Tue, 2005-04-19 - 12:16
Yakota, I know of others who while going through perimenupause have more seizures very common. As I just posted I am in perimenupause and it is one reson I am all having to intorduce new meds as the old one I had been on for years were not working with hormonal changes. I am hopefully that Lamictal and Keppra will eventually do the trick but time will tell. Best to you I get to get out and enjoy the sun more another time.

RE: RE: RE: RE: RE: RE: RE: VNS clearly not for everyone!

Submitted by Yakota on Tue, 2005-04-19 - 13:07
Hello Everyone. Hi Cedar. No problem about the delay. Thanks for all the helpful responses to all that I have posted at this site Being perimenapausal has created much kaos in my life with the increase in seizure. This is a BUMMER, something that I definately didn't plan to encounter. I have been off AEDs now for nine months. (What a time to try and go all natural huh?) ..It happens. Anyway. With the unforseen increase in seizure I may have to see my neuro again. I do not relish the thought of putting my life in the hands of any physician after what I lived through; emphasis on the word LIVED!!! I am at a crossroads where I must make a decision. I am currently vising outside of the us. (taking a 2 year sabbatical.) So I am going through this alone. All of my family is back in the states. I have felt really crappy with seizure since Sunday afternoon. I missed church Sunday pm, and have been pretty immobile since. Although today I plan on going out for a bit. Physically I am drained from all the seizure but need to flex my leg muscles so they don't become jello. Ha!Ha!Ha! After all I have been through God has left me with a good sense of humor A. Perhaps I am mistaken but it seems that many of ya'll would like the vns removed. Has anybody out there been successful with this endeavor? Yes cedar. I too wonder what the leads will do when they are not secured into the battery pack?Float I guess. Ha! Ha! Ha! Again. And who pays to have the vns removed? Will this be a medical expenses that comes out of my pocket? Yes. Spring has sprung. It looks like it is going to be a beautiful day outside. I think I will change my hair colour to celebrate the freshness of spring. Chat later. SEiZURE FREE IS THE ONLY WAY TO BEEEE. GOODBYE. Linda

RE: RE: RE: RE: RE: RE: RE: RE: VNS clearly not for everyone!

Submitted by 38benny on Tue, 2005-04-19 - 13:25

Hey Yakota - Not ALL of us want the VNS out... I LIKE MINE... I think I'll keep it... Seriously... for me its been a good thing when I need it - like last week especially - it was there to bail me out of some pretty icky situations... and its comic relief at the same time - ya can't take me anywhere without me getting stuck to something! In stores (like Sears - refridgerators, washing machines etc...) eating out ( forks,knives spoons - they're attached!) :> it quiets the little kids when we're out - they think its "magic" - anything to keep them calm and smile... BUT AGAIN IT WORKS AND DOES WHAT IT NEEDS TO DO FOR ME. So we're not all bad stories...

Talk later....

JoAnne

Hey Yakota - Not ALL of us want the VNS out... I LIKE MINE... I think I'll keep it... Seriously... for me its been a good thing when I need it - like last week especially - it was there to bail me out of some pretty icky situations... and its comic relief at the same time - ya can't take me anywhere without me getting stuck to something! In stores (like Sears - refridgerators, washing machines etc...) eating out ( forks,knives spoons - they're attached!) :> it quiets the little kids when we're out - they think its "magic" - anything to keep them calm and smile... BUT AGAIN IT WORKS AND DOES WHAT IT NEEDS TO DO FOR ME. So we're not all bad stories...

Talk later....

JoAnne

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