Seizures while sleeping with a CPAP machine

Hello @kennethracey and welcome to Connect,

While I do not have any experience with seizures or the meds that you have mentioned, we do have a number of members with seizure disorders. I'd like to invite @jakedduck1 to this discussion.

On Connect, we also have a discussion on how to effectively use an appointment with a new specialist. You might find some of these suggestions helpful before you see the new neurologist on March 10. Here is the link to that discussion,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
You mentioned that you are having seizures, "while sleeping with a CPAC machine." Is the CPAP machine new to you? Did you have seizures prior to using the CPAP?

@kennethracey
First and most important I would like to thank you for your service to our awesome country.
Like Teresa, I’m curious to know if you had seizures prior to your sleep apnea? If you already had seizures sleep apnea can make them worse. However, there was a study done that showed a 50% decrease in the seizure activity with the use of a CPAP machine. Have you had any seizures since you began Keppra?
Are you having nocturnal generalized tonic clonic seizures, also known as grand mal seizures which is an older term. Have you had an EEG yet? Approximately 50% of the time when people have EEGs they are normal unless you are having seizure activity at the time of the test. A normal EEG doesn’t mean that you don’t have a seizure disorder.
There are some safety concerns that you should be aware of,
Don’t take a bath unless someone is with you.
Showers can be dangerous as well, there have been reports of people who have drowned in the shower and when people fall depending on the type of control you have they can push the lever to hot water and get burned. A shower chair is recommended or sitting on the floor to reduce injuries from falls.
I don’t know if you cook or not but that can be another danger. I always try to cook everything in the microwave to prevent burns. If you use the stove top you should use only the back burners.
Don’t lock the door in the bathroom. I’ve had many seizures there and fell against the door and my dad had to crawl through the window. Sharp corners are also a danger, I have fallen and cut my head more times than I can count not to mention multiple other injuries that required surgery. Another danger is the possibility of choking while eating if you have a seizure. Family and friends should be familiar with the Heimlich maneuver. Fireplaces can also be a hazard, we had ours removed.
There are lots of other safety concerns however you’re probably tired of reading about them by now.
If your only having nocturnal seizures you probably don’t need to be as concerned about these issues, however nobody knows when they’re going to have a seizure, you may have nocturnal seizures for 50 years and then have seizures during the day no one can predict them. Another safety precaution that you may want to consider would be he sees your pillow or an anti-suffocation pillow. You’re not the most comfortable but they have saved lives.
I asked the doctor what type of seizures your having and where they are originating known as the seizure focus. How many seizures have you had and have they all been nocturnal?
When you go to the doctor you should take someone with you, Preferably someone who has witnessed a seizure so they can explain exactly what happened. A video of a seizure is extremely helpful. Neurologist will want you to explain exactly what happened before during and after your seizure.
Be as thorough as you possibly can be and don’t leave out any detail no matter how insignificant you think it may be.
Are you having any side effects from your Keppra?
I’m not very familiar with the newest seizure medications but everyone I ever tried always made me sleepy and usually caused memory issues as well as balance problems. Probably the most distressing side effect of Keppra are the potential mood side effects like anger, irritability, aggression etc.
I hope your seizure disorder is controlled now, If it’s not how often do you have a seizure?
Take care,
Jake

Thank you. Teresa.
Yes the CPAP machine is new to me and I’m trying to get use to it. The doctor subscribed Keppra 500 milligrams in morning and 500 milligrams at night. For my seizures. I missed a dosage 1 evening and had 3 seizures. Didn’t know how important staying on this medication religiously was.

Thank you for your response. Teresa
Keppra makes me very sleepy and drains every ounce of energy right of body. Makes it a struggle just to walk from room to room in the house. I’ve never been on medication in all my life. Yes when I visit the neurologist on the 10th my wife will be with me she has witnessed my Seizures. I don’t know what kind of seizures they are called all I know is they are NO JOKE and NO FUN they SUCK. Thanks for taking the time to respond and share. Ken Racey

Hi, @kennethracey - wondering if Connect members who've talked about CPAP machines before like @muffy @johnhans @thankful @johnbishop have heard of seizures associated with CPAP use?

@kennethracey and @lisalucier I have not known anyone to get seizures while on CPAP. I do know from friends who have had epilepsy that being tired can bring on seizures so I would believe that using CPAP would help lessen seizures. If you live in the USA you might want to check in with your local chapter of the National Epilepsy Foundation for more info. The address is epilepsy.com and then do a search for your local chapter.

Hi Friends. I've been using CPAP for over 16 years. I've read a number of articles in order to convince myself that this treatment is beneficial to my health. It surprizes me to hear about an apparent association of seizures with the CPAP treatment. None has appeared in anything that I have read. Additionally, the treatment is used to increase your oxygen level in your circulatory system. Does an increase in oxygen level, I presume that that is occurring, trigger seizures? I can't answer that.
At my next sleep center follow up, in three weeks, I will certainly ask my doctor. Perhaps, that is a question to raise with your doctor.
Praying for a clear answer and remedy for the seizures. It must be very frightening.

@kennethracey
Hello Ken,
I certainly could never have come up with a more accurate description of a seizure than you did.
Some people become less fatigued after being on the medication for months but others are fatigued the entire time. Most if not all anti-seizure medications cause drowsiness at least in some people.

Below is a link to the Epilepsy Foundation where a few people are talking about the effects of Keppra and exhaustion,
https://www.epilepsy.com/connect/forums/medication-issues/keppra-and-extreme-exhaustion
Here’s a link to vitamin D deficiency and people who have epilepsy,
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4149948
You might ask your Neuro if an Epilepsy Gene Panel would be beneficial and also about drug gene testing (pharmacogenomics.) Remember there are no stupid questions, if you don’t understand the doctors answer there’s nothing wrong in asking it again.
https://www.mayo.edu/research/centers-programs/center-individualized-medicine/patient-care/pharmacogenomics/drug-gene-testing
Here’s one more link at Mayo Clinic Connect for CPAP users. You might ask if there are any CPAP users who have seizures.
https://connect.mayoclinic.org/discussion/apnea/?utm_campaign=search
This really will be the last link. This is the Coping With Epilepsy forum where people are talking about CPAP. Being an epilepsy site I am assuming that most if not all of these people have seizures as well as a sleep disorder. You may want to join and ask your questions here also.
https://www.coping-with-epilepsy.com/search/370/?q=CPap&o=date
Best of luck to you and I hope you update us on your upcoming appt.
Jake

@kennethracey, @lisalucier- I have no information as it relates to C-Pap use & seizures. This is the 1st I've heard about this problem. Jim@thankful

Hi, @kennethracey – Like the CPAP users here, I have never heard about seizures related to using a CPAP. I did a little searching and found that there is a lot of information available stating the opposite...the use of a CPAP can reduce seizures and can be a treatment for Epilepsy.

Treating Sleep Apnea in Epilepsy Reduces Seizures -- https://health.usnews.com/health-care/for-better/articles/2018-02-21/treating-sleep-apnea-in-epilepsy-reduces-seizures