CPAP and epilepsy update

Hi all -

Hope everyone here is doing well. You guys have a great community going here. I just wanted to post an update on my condition. I started using CPAP in the middle of February, in hopes that it would provide relief for my medication resistant epilepsy. It has worked absolute wonders. I have had no seizures since starting CPAP treatment (knock on wood). It's really just saved my life...

I use the Mirage full face mask because I am a mouth breather. I would love to use the nasal pillows, but it just doesn't appear to be an option because of my mouth breathing. Tried the chin strap to keep my mouth shut, but it just didn't work. The only complaint (and I wouldn't even call it a complaint. It's a small price to say...I love CPAP) that I have with CPAP are the marks that it leaves on my face. I'm a red-head and as a result, pretty fair skinned. My forehead is always red from the plastic tabs that press against your forehead. I tried to adjust the mast so it takes as much pressure off the forehead as possible, but that causes leaks in the top portion of the mask. Any helpful hints as to how to solves this? Thanks a lot. And thanks to CPAP for making such a huge impact on my life.

http://www.padacheek.com

Is the best suggestion for that.

Did you try a chinstrap and Tape?

I never thought I could use nasal pillows until I did that. Paper tape all the way across the mouth and a 3 inch ace bandage over the crown of the head and under the chin.

danrosz wrote:I started using CPAP in the middle of February, in hopes that it would provide relief for my medication resistant epilepsy. It has worked absolute wonders. I have had no seizures since starting CPAP treatment (knock on wood). It's really just saved my life...

Congratulations! I have epilepsy also, so this is really interesting to me. I'm one of the fortunate ones that it's been responsive to drug therapy. But I know how desperate people get. Did you go this route because of a lack of sleep is a major seizure trigger for some people? Who pointed you in this direction, or was it your own "hunch" that SA could be contributing to the seizures? PM if you feel like it.

Doug.

Thanks for the responses everyone. I ordered a pad for the forehead from the linked site. It should take care of the redness in the forehead area. Is there anything I can do for the redness on my face from the outline of the mask, or is that just something I am going to have to deal with? Thanks again for the help....

Hey Doug -

Sorry about to hear about your epilepsy. I'm glad that it sounds like you have it under control with medication. I first started having seizures when I was 18. I am 23 now. I have been on a number of medications with varying degrees of success/side effects (depakote, dilantin, zonisamide, kepra, lamictal, and lyrica). I've had at least one seizure on all of those medications except lyrica. I attribute the success I've had on lyrica to CPAP though.

I considered CPAP as a treatment option for a variety of reasons... a) I knew that I was a snorer b) I knew all about sleep deprivation as a seizure trigger. c) the way I felt after a good night of sleep (After a good night of sleep, I knew there was no way I was having a seizure that day.

After I moved back in with my parents after college, my epilepsy got worse than ever. Not only was I having a seizure once every two weeks, but I was having constant auras during the day. It was almost impossible to function. The fear combined with your head just not feeling right wasn't a good combination. I thought I was going to have to quit working. It was just a big mess. I was trying to figure out why all of a sudden things had gotten so bad when I moved home. The only thing I could figure out was that I wasn't sleeping well in this new environment. I didn't know the reason why I wasn't sleeping as well (maybe it was dust, maybe it was allergies to dogs, who knows), but I knew I wasn't. I had heard about CPAP as a possible treatment for sleep apnea so I started getting the wheels in motion. My sleep study revealed that I had mild sleep apnea (but that was in a hotel room in a dust free, pet free environment). I pushed for CPAP as a treatment, and my doctor said it couldn't hurt. Along the way I found the following studies that showed people with intractable epilepsy had success with CPAP was a form of treatment. All of the studies have small sample sizes, but are still intriguing and meaningful I believe. Here is a link to one of the studies: http://www.medscape.com/viewarticle/548724

Anyway, as soon as I started my CPAP treatment I felt an IMMEDIATE difference. The auras were gone for the most part and I just felt so much better. I can function again. It's been incredible.... Let's hope it lasts...

Again, good luck with everything. I also pmed you my response. Feel free to pm me or post a response. Thanks again.

that is good news, that doesn't surprise me, hypoxia from OSA can aggravate symptoms of epilepsy.

OSA causes a lot of systemic problems that wear you down over years, it is why you don't sometimes get immediate recovery.

If I had epilepsy, I would see a very good Cardiologist and have them rule out any irregular heart beat. There have been several cases where once the patient had the exam, identified the irregular heart beat, got treatment with a pace maker their epilepsy seizures all but went away.

There was a television documentary on it I watched, sorry I tried searching for it before, but couldn't find it. It may have been on PBS from my area, but I recall watching it.

I had a friend I worked with that had epilepsy, come back from lunch he'd have a seizure. They finally found a cocktail drug that worked for him but most of the others he had tried failed. I felt sorry for the guy, he had a couple kids and a wife, had to commute to work, they'd take his license away every couple months, he'd have to go back to the DMV panel of doctors to get his license back just to support his family.