For Anyone with Nocturnal Seizures

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Evidently there are two forms of sleep apnea, central and obstructive, CSA and OSA.

Everybody knows about the OSA variety where you snore like a chainsaw and get banished to the couch by your mate.

The CSA variety is more subtle and harder to detect. It happens when the brain just does not get the signal through to the body to breathe. This oxygen deprivation can then cause a seizure.

It is also possible to have a combination of these two disorders.

From what I have been reading, for those of us with exclusively nocturnal seizures that are completely idiopathic, sleep apnea could very likely be the underlying cause of the problem.

This opens up all kinds of exciting possibilities.
 
It is difficult to find an article that says just how many people with seizures may have apnea, but this one http://epilepsytalk.com/2013/06/10/epilepsy-and-sleep-apnea-a-dangerous-duo/ says 30% of those with medically refractory seizures are likely to have sleep apnea (the author of this article gives references for this and other information in her article). So, almost 1 in 3. Given this, though, many of us who have had a VEEG would have had this tested for. There is typically an electrode (different from the EEG electrodes) attached to you for recording heart rate and another that detects breathing patterns.
For anyone concerned about sleep apnea, you can ask for this to be checked for. You would typically have electrodes attached to you that record breathing and heart rate which in turn are connected to a monitor (holter device) that can be taken home. How long you are able to have one varies with your doctor etc. but around here 3 nights is standard.

It is also important to note, as mentioned in this article, that a seizure can trigger sleep apnea so it is not just a one way street (ie. apnea triggering a seizure). http://www.epilepsyottawa.ca/uploads/2/2/3/1/22312562/efs-sleepandepilepsy.pdf Also, the obstructive and mixed (central and obstructive) sleep apneas are more common in those who are overweight, so more reason for anyone overweight to lose those extra pounds!
 
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AlohaBird said:
It also covers all the other "sleep disturbances" that can be mistaken for epilepsy and how to tell them apart
Click to expand...

Fortunately epileptologists are more versed in making these distinctions than neurologists, but it never hurts to ask about these alternative possibilities to make sure all ground has been covered. Epilepsy centers will often have at least one other doctor review a patient (or at the very least their video EEG) to offer an additional unbiased opinion on whether the EEG and/or video, and patient's symptoms, is consistent with epilepsy or another condition.
 
Awesome article with some other great links. Thanks for posting that, masterjen.

One thing that caught my eye was the vicious cycle nature of nocturnal epilepsy. You have seizures at night so you are sleep deprived which can then cause more seizures and around we go. So true.

She also pointed out that many AEDs can actually keep you from getting to sleep and/or decrease the quality of the sleep you do get. That's not helping any!

Unfortunately for me out here in the middle of the Pacific, there is no such thing as an epileptologist available. I am going to see if my new neurologist can arrange for a sleep study.

I found a Neurofeedback practitioner here on Molokai but he has never dealt with epilepsy before, only things like ADHD, depression, and anxiety. I am willing to be his lab rat and he is willing to treat me as long as I realize that he is on a learning curve.

One thing he told me that I think is awesome that I didn't know was possible is that neurofeedback can be used to treat apnea. He said he himself had a bad case of apnea and cured it.

I don't think I could stand one of those CPAP machines attached to my face at night. I think that would cause more sleep disturbance than it cured.
 
Neurofeedback for epilepsy isn't new. I was in my apartment complex's gym and the other person there was watching Marcus Welby while on the treadmill, and oddly it was an episode about a boxer who developed epilepsy. The man wasn't doing well on medication, and the doctors decided to have him try biofeedback. This would have been the early 1970s!
 
I am fully convinced that neurofeedback can be effective for epilepsy. The part that was new to me was the part about tackling the issue from the apnea perspective. I didn't know it could be used on apnea. I thought apnea was something you got if you were overweight.
My sister describes her very overweight husband's apnea as sounding like "a bull elephant seal". They got separate rooms along time ago.
What I hadn't realized was the neurological component to apnea even for those of us who don't snore. Or at least I don't think I snore. My dog isn't telling.
 
From the second link masterjen posted above.

"How common is having seizures during sleep or upon awakening?
Forty-five percent of people with epilepsy have a form of sleep epilepsy, whereas 34 per cent have seizures upon awakening and 21 per cent have diffuse seizures (while both awake and asleep)."


That means that 79% of epilepsy is sleep related and only 21% doesn't care what time of day it is. I think it's time that the whole issue of sleep and epilepsy got lots more attention in terms of research.
 
A very interesting thing to goole is this

orofacial oropharyngeal exercises for apnea

It seems that regardless of the cause of the apnea (CSA or OSA) the common denominator is that the airway collapses blocking breathing.

So, there is a school of thought that advocates strengthening the airway area through exercises.

Some interesting stuff.

Even if it is not "The Cure", if it keeps the airway open long enough for the breathing to restart, it might help prevent a seizure.

It supposedly only takes twenty minutes a day but you have to be diligent about doing it regularly. The exercises are described by several different sites but they mostly come down to focusing on the tongue, jaw, lips, and neck area for a good muscular workout.

And you get to do fun stuff like stick your tongue out repeatedly. :)
 
I have sleep apnea and was not overweight when I first started using a CPap and my mother was a tiny old woman who snored so that the whole house shook as she became terminally demented during her final years. We did not know about sleep apnea at the time. She DID have extra chins and I think that has been thought of as an important factor in Sleep Apnea.Now that I think of it, I know several people who are very skinny and use CPap machines.
 
AlohaBird, I think a Sleep Medicine doc might be a good idea because currently there are other options besides C-paps. And you are quite right - C-Paps are draconian but the alternative [death it was said] was worse so I suffered through it. Now that I think of it, this subject has a lot to do with how angry I am at doctors. It has not been an easy ride, that is for sure. I think I better read the article you are discussing.
 
There are several sites some of which are giving out the info as a public service and some want you to buy their book but will give you a little teaser.

If the objective is a sound night's sleep, I really don't see how a noisy machine attached by a tube and rubber bands to your face can really be helping much.
 
The morning after I have NOT used the cPap I feel a certain kind of low-key exhaustion that means going through the day like a zombie. I feel much worse than if I use the machine. When I use the cPap I CAN feel depressed and tired and also upbeat and energetic. Using the machine still isn't a pleasure but it is a part of life [I have been doing it about 20 years I think]. Until about a year ago I used earplugs because the noise bothered me. Rearranging the tube when you turn over is not conducive to good sleep. BUT life on earth is better than the alternative. As I say, I think there are new options that have outdated the machine and when I don't have anything else to work up a lather over, I can work one up on how much money SOMEBODY must be making on all these cPap machines. Our tax dollars are going to buy millions of these machines. Medicare does not even let you buy your own little filters. [I have tried.]But that's a different story.
 
Urgh. I suppose if you really need it, you do.

I'm going to try to remember to be consistent with the exercises. An extra little bonus is that it feels like the same muscle groups are being worked that are often touted as how to give yourself a non surgical face lift.
Way back in the day Jack La Lane used to have a whole set of face exercises.
 
I have not looked at those exercises yet but I will. They sound like a very good idea. When I can get it together and as things develop here I intend to post about tinnitus and seizures -- no doubt the issues around sleep apnea fit right in.
 
AlohaBird

Snore like a chainsaw, that is so funny because it sounds like me at times, my wife usually hits me to wake me. I refuse to take the couch. :roflmao:

I am going to read more about this again, Thank you for the tips.
 
Yes. And I am taking 1000 mg magnesium plus what I get in my diet, which is a lot.I think it is coincidental and not causal that this issue is reaching a critical point just when I changed my diet to fall in line with Perlmutter's recommendations. My blood pressure is good. I am also using CBD oil to sleep. Wow. Great stuff.
 
Fedup, You have been on my mind today and here you are again, telling me you snore so loud. I may actually have something to say to you that MIGHT be of major help. Snoring in that loud way is an indication of Sleep Apnea and sleep apnea, many small breaks in breathing, many small moments when your body does not have enough oxygen, is definitely related to seizures plus everything else [death] you don't want. Please, please, please get this evaluated by the medical people such as they are. I have sleep apnea and use a CPap machine, have been for years. It isn't nice but it is probably the reason I am still alive and kicking. Do those exercises AND get the medical evaluation! Take good care!
 
:agree:^^^^^

Shakespeare knew the crucial role of sleep in the human mind and overall health. This is my slightly revised form of the passage from Macbeth that I used to recite to myself when I was having several nights of multiple seizures every week.

Methought I heard a voice cry, “Sleep no more!
Epilepsy does murder sleep”—the innocent sleep,
Sleep that knits up the raveled sleave of care,
The death of each day’s life, sore labor’s bath,
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast.

So, I think for all of us with E, those with exclusively nocturnal and those whose E doesn't care about the clock, sleep is still the pivotal issue.

Better Sleep=Better Life
 
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