I've read different views on VNS usage for people with sleep apnea.My daughter is 17 and nothing has helped her seizures-meds, diet and three stage craniotomy. She is disabled,nonverbal and low tone thru her abdominal/trunk area. She is given diastat every 5 days or so when her seizures are really bad- all types but grand mal- turning to generalized seizures.

She doesn't tolerate a C-PAP for the sleep apnea. We are going to have another sleep study done soon and then the VNS--her neuro doesn't seem concerned about her sleep apnea but I AM.

I am also worried about any side effects because she can't tell me how she feels and yet---if the VNS could help her, I hate to have my fears stand in the way of something that might help.

So the question is -anyone with a VNS who has sleep apnea- and how has it helped your seizure activity and your apnea?
thanks cait

Cait,

Hello and welcome to our loving group of friends. I have had a VNS for about 5 years, it has not completly controlled my spells, but has help a great deal. They are a lot easier and not as many in a month. Where I was having them often during a month's time it has cut them in about half. Also before I got it my seizures were much easier on me. What type of medications is she on?

Just about a year ago I developed sleep apnea and started sleeping with a C-PAP , at first I had a hard time but have adjusted to it. So in my opinion the VNS is not causing any problems.

Again I will say the VNS will not take the seizures away but may help her out by easing them. Which my doctor said it wasn't a gurantee that they were not going completly away.

Let me know if you have any other questions. Hope I have at least answered some of your questions. Give your daughter a great big for me and tell her to keep her head up.

Darlene

[FONT="Comic Sans MS"][SIZE="4"][COLOR="Blue"]If you have Sleep Apnea, the VNS will make it worse. There are warnings placed in the Physician Manual about this. Before I was implanted I had a sleep study done but it was 2 years after my VNS implant that my Apnea showed up. Mine is life threatening . My oxygen levels drop to less than 50% so not only do I have a CPAP at high settings I am also on oxygen. There are several members on my site who also have SA and VNS.

I am very concerned with implanting this device into those who are unable to communicate. Only about 1/3 of those implanted actually get a benifit from VNS. With your daughters' merid of medical issues, it may make matters worse for her. Since she cannot communicate, she won't be able to let you know if it's hurting or malfunctioning.

Dear Cait
I have a VNS but don,t have sleep Apnea but I do have a Sleep Disorder where I can not sleep some nights.I got a VNS put in 2003 and till this day I could not tell you if it has done me any good like birdbomb said this is not a magic pill for all.but I do hope this helps your daughter and you also can find out if she can wear the cpaps,
I am familar with this machine my husband wears it at night.he has Sleep Apnea so best of wishes.

Hi, I just want to tell you I have a VNS too. It was turned off after I had an ache in the side moving to back of my head. It was so bad I started to scream & cry (there was a little man in my head hiting my skull with a hammer). Yes, a VNS is not a cure all. But it can help some. Good Luck with everything.