My Epilepsy and CPAP...and some CPAP q's

Hey everybody...I found this forum this morning while doing some searching online. Thanks to all the administrators that keep it up and running and the posters that contribute on a daily basis. It seems like a great community.

I just wanted to share my CPAP experience on the board. I thought that maybe one day somebody would see it and they would explore the sleep apnea angle approach to help tackle their epilepsy. When I was 18 years old (I'm about to turn 23 in a month), I had my first tonic clonic seizure. It completely took me by surprise, and threw me for a loop. After a round of EEGs and being placed on Depakote, I was seizure free for about 4 months.

I then decided to go off Depakote, and it was then that I had a second seizure. This second seizure happened while I was sleeping, and I fell out of bed and broke my nose. I also suffered a deviated septum which was surgically corrected the following summer. I always had minor congestion problems before the nose injury, and this just made breathing that much more difficult (maybe had something to do with minor sleep apnea that I will discuss later).

Over the course of the next four years, I had my good times and bad times in terms of staying seizure free. Overall, I suffered approximately 12 seizures during these 4 years I believe (Don't have my medical history on the computer I'm typing this on right now). I also went through a number of different anti epileptic drugs during these four years. Some were harder on the body than others.

Starting last July, things took a bit of a turn for the worse. I started on a drug called Lamictal, and it actually worsened my condition. I started seizuring twice a month. And it wasn't only the seizures that were the problem; it was these terrible strange feelings I'd get in my head throughout the course of the day (auras). They're hard to describe to someone that hasn't experienced them, but they were debilitating because of the fear they caused (I thought all of them would turn into seizures) and just how they made my mind feel.

I quickly switched to Zonisamide in October. This didn't do anything to alleviate the weird feelings but luckily it stopped most of the weird feelings from turning over into seizures. I only had two seizures (both in one day about 4 weeks ago). However, the drug was especially cruel on my body. I had never been a depressed person before, and it was making me horribly depressed. It was just awful.

Here's where the sleep part comes in...Throughout all of this I had a pretty good feeling that this may be sleep related. Anyone will tell you that one of the main seizure triggers out there is sleep deprivation. I would find that I would go to bed at a more than decent time, but still wake up extremely exhausted. The more exhausted I would wake up, the worse the strange feelings in my head I talked about would be. However, if I opened a window above my head that night I would find that I would get a much better sleep than if I didn't. I also found that different locations caused these feelings in my head to be worse. Ex. If I slept in my room at college, I'd get a better night of sleep than if I slept at my parent's house. Very strange...

Anyway, I did some reading online and found a couple of studies where they have been treating patients with uncontrollable epilepsy with CPAP and they found that the CPAP gave them great improvement or stopped their seizures entirely. After reading that, I went and saw a sleep doctor at Penn Sleep Center and he had me get a sleep study done. It came back that I had mild sleep apnea, and he said that it couldn't hurt to give CPAP a try.

My doctor and I decided it was best to go with the full face mask since I tend to be a mouth breather. The results were INCREDIBLE. For the first time in 9 months I felt like I had my life back. I had a clear head again. It was absolutely AMAZING. It's been this way for 3 weeks now. It's the greatest thing that's ever happened to me. I have my life back....I truly am so grateful for what CPAP has done for me. It has completely cleared up my head.

The only negative...and it's a small price to pay considering what the machine has done for me, is that I have lots of redness on the bridge of my nose. I know that this is a common problem. I am currently using a RESMED Ultra Mirage full face mask. It's a size medium. Do you think that going back to the supplier and asking for a large would help. Or does a bigger size not really alleviate any of the pressure off of the nose area? I wore a band-aid over that area last night but I'm not sure how much that really helped. Any suggestions would be much appreciated.

But thank you so much to everyone for having a forum like this available. It's much appreciated. And thank you to CPAP for giving me my life back for the past 3 weeks. If there is anyone out there who is struggling with getting your seizures under control I suggest you at least explore the CPAP/sleep apnea angle. Thanks.

-Dan

That is certainly a great post and very interesting. I hope you stick around the forum and keep us informed on how things are going for you.
Good luck with everything!

Hi Dan,

Welcome to the forum and thanks for your story.

With regard to your situation with your mask, here's a link to CPAP.COM's sizing guide:

https://www.cpap.com/cpap-mask-sizing.php

To my way of thinking, the two basic reasons for that mask to be able to "hurt" you are if it's the wrong size, or if it's worn too tight (being improperly adjusted).

From my experience with the sizing guide......If the measurement comes out halfway between sizes.....go for the larger size. I also understand that it makes a difference in the type of cushion you use, too. For the UMFF mask, there are the "Standard" and the "Shallow" cushions. I've always used the Standard cushions even though the sizing guide lists Shallow for my measurements.....but I've never had a problem with them.

https://www.cpap.com/productpage/resmed ... dgear.html

Best wishes,

Den

Welcome Dan
I'm happy that you're feeling better and having improvements with your seizure disorder. I think you'll find, as you read on this forum, that getting the right mask is the hardest part. Lots of reading here. This forum has made my cpap journey so much easier because of all the information.
Nana