I had my VNS turned off in May 2008 because I started to get headaches. They were not real bad at first. Then one day it slowly got worse. I was on BT telling about it & everyone suggested I go lay down cuz it was awhile that I felt funny & started seeing a little double. Later that day it got so bad that I started crying & called my dad for a ride to the ER. On the way there it got better. I accually can't say it was the VNS. Later my Dr turned it off & said it could be the wires or leads. I do want to try it again, thinking it was not the VNS. (But I heard the leads might not be able to be removed because of scarring (I got it in 2000)).

If it's the VNS do you think Cyberonics should pay? But how could that be proven? What if it was due to the Dr that put it in? What if he doesn't say?

:D HI Lorkon!

Headaches are a side effect of VNS. The study statistics showed those decresed in time, but in many people's circumstances, they only got worse. How are you feeling now that it has been off since May? Sometimes a persons head hurts while stimulating, then it goes away, others it is persistent, it varies from person to person. Have you had any other tests done to rule out anything else causing your headaches?

Since you are having an awful side effect that is continuing while the VNS is activated, your insurance should pay to remove it. Your doctor would have to prove medical necessity to remove it for insurance to cover it. Cyberonics doesn't pay for anything. As far as the coils around the vagus nerve being removed, the scar tissue would have to be looked at to see if there is too much build up. Some doctors will look, and some won't even attempt to look. If the tissue build up is too great, it would be too risky to safely remove the coils.

Keep us up to date and hope you are doing good!

Dispatch B)

Hi Lorkon-
I so understand the headaches! I went to the ER more then once with headaches so bad I couldn't even open my eyes. Of course they could never find a reason for the headaches and at that time nobody even knew what a VNS was!

My pain started at my temple and ran down my face into my jaw and ear.
Is yours anything like that?

Once I had mine shut off it got better but it took years for the pain to go away altogether. I still have pain when the weather changes.
FUN,FUN,FUN....

I do hope your feeling better and your pain is not a bad as mine was.

My first headaches were small ones in the front of the temple. Then that went away. Months later (I hardly remember the headaches I had at first) I had that big thing under my ear then it was in the back of my head. Did I say it felt like a constant banging on my head with a hammer? Early that morning I started to see double & was kinda 'woozy' (hard to explain) (it sorta felt like one of my sz's where it starts with seeing double then I get sorta woozy...dizzy if I walk, but not bad).but I was well enough to type on the computer & tell ppl at BT about what was going on (maybe I wrote here too???).

:D HI Lorkon!

Have you ever been checked to see if you have occipital nerve damage? That may be the cause for the back of the head headaches, and it could be the VNS.

Take care!

Dispatch B)

Hi lorkon!

That sounds about right. I have all the same pain. Isn't it funny, when I'm telling people about what my headaches feel like I tell them there is a little man with a hammer inside my head. HATE that man.

I've had a tuff couple of days the weather is changing here, it's getting cold and that means lots of pain for me. At lets for a while. Once I get used to it, it gets better.

I know it's been a long time, but...I had many X-rays & they found nothing wrong. BTW, I'm going to get my VNS out & have surgery. Also, almost rigtht away my neuro said I wouldn't be able to get the wires out. (I got it in 2000.)

:D HI Lorkon!

I responded to you in the thread you started regarding removal, so I won't make ya read it again.

How are your headaches doing now that the device is off? How have you been doing with seizure control?

Take care!
B)

Petunia,
I have trouble with headaches when the weather changes.

Thankyou for asking Dispatch. I'm OK now

Ppl often call it a headache if you have the ache in the forehead & maybe temples. This was mainly in back of my head. (Who said it was a little guy with a hammer? lol but :Tantrum: really) I had tests & there is nothing wrong in the back. We wonder if it was the something to do with the VNS. What if it was/is defective too? How would anyone prove it?

Hi Lorkon,

So far, we have not found that any entity or agency is responsible for making Cyberonics accountable for anything that goes wrong. And, if the device is removed, the only place it goes to evaluate it for problems is....Cyberonics.

For the most part...the medical community only seems interested if VNS is beneficial. If it does not provide relief or if there are adverse side effects, no one wants to hear about it.

I hope you'll be able to find a surgeon willing to attempt a complete removal prior to your other surgery.

Good luck! Oreo

:D HI Lorkon!

You are quite welcome!

My headaches at the back of the head were VNS related, and this was reported to Cyberonics-so basically ignored. My doctors figured this out when the device was shut off & the headaches decreased in intensity and frequency. VNS (in my case) caused problems with the occipital nerves which are in the back of your head (there are 4). I ended up having all 4 of those nerves burned. It wasn't the worst thing I went thru...having VNS and all the problems it caused has been the worst for me.

Hope things get better for you really quick. Please keep us updated!

B)

Well, it's been a long time. We decided against surgery because of the price.
I went to see a Dr for removal & he didn't want to atempt to remove the leads. He made me sign something, I think it said HE was not responsible for anything. Now I wonder if he would be any good.

However, It has been awhile & now I'm thinking of getting it turned on again because the seizure amount has increased (the Dr wasn't the one who turned it off, he wasn't there when I went. His nurse suggested turning it off & did so. Then when I saw him, he agreed with her doing so since I told her OK)

It is now Friday (4/16) & I go see him Monday for my regular appt.

:D HI Lorkon!

Wishing you :goodluck: and peace while you wait and make the decision you and the docs feel best for you! Keep us in the loop!

Take care!
B)

Hi Lorkon,

It is good to hear from you. Hope things go well with you on Monday. Sorry to hear about the increase in seizures, this side effect seems to be more prevalent than the manufacturer would like us to know.

Take care and please let us know how you are doing.

Hugs,
Cindy

Hi Lorkon,

:Yeah That: Hope all goes well, hope you can get some benefit from this whole process.

Looking forward to hearing what comes next!