Sleep and seizures

[Kimberly H]

I have a general comment and not sure if this is the place to post it: My son will have grand mal seizures only b/t 5:30 and 6:30 in the morning. In the past he would always have more unless we gave diastat. We now have a new treatment option that is working. We wake him up soon after the seizure (30 minutes), give him his regular seizure meds and then do not let him sleep for more than 15 minutes at a time. This way no diastat and we stop at 1seizures versus 2 or more. Does anyone else have a similar experience?

 

[epileric]

I have had similar experiences in that even though my seizures are only partials I do occasionally have nocturnal ones & they will come around the same time of night until they stop. When they come back it is usually at a different time.

I have had Tonic/Clonic (Grand Mal) seizures & I would honestly advise you to let your son go back to sleep after giving him his meds & letting him wake up when he wants. A seizure like that takes a great toll on the body & being woken every 15 minutes really doesn't allow someone to go into a very deep sleep as would be needed.

I have been able to sleep a whole day after convulsing & still slept well that night.

 

[Kimberly H]

Here is the problem-if he goes back to sleep then he will have another seizure within a hour and so so. So now I have to give diastat and have him out of it for 2-3 days. Maybe I didn't specify that I am preventing many seizures in a few hours. Does that make sense?

 

[epileric]

Doesn't the diastat stop him from having another seizure & if not why use it? I'm a bit confused.

 

[Kimberly H]

the diastat puts him in a funk for 2 or 3 days where he is out of it.

 

[summah]

Something in common

I ONLY have seizures when I'm sleeping. I would def let him go back to sleep and wake up on his own, because sleep disturbances and sleep deprivation are a known trigger for seizures. That sucks that the diastat makes him feel that way for so long. I'd recommend the seeing if his doc would try klonopin instead. They're pretty much the same thing, both are in the benzodiazepine class of medications. I take a very low .5 mg dose before bedtime, and it will keep me from going into a seizure every time. And you dont wake up feeling like crap the next day. I also take dilantin everyday too...but the klonopin helps when all else fails. Anyway though, I hope this was maybe helpful in some way, and good luck with your son. Believe me, I feel for him. This stuff isn't fun.

 

[huskymom]

I am with summah. I only have my seizures while sleeping. While it is frightening to watch and you are trying to keep more seizures at bay, I think it would be more beneficial to let him sleep. After I have had one and wake up, I feel so terrible that the best thing that I can do for myself is to go back to sleep. It helps your body and mind to heal after the seizure. I understand that you are trying to fend off a chain of them. Your doctor is going to have to come up with a different dosage of your currents meds for him or try something else. If I get into a cluster of them I take lorazapam. It usually helps, but sleep is the best. Good luck!

 

[Kimberly H]

Thank you all for your comments. I was hoping someone had a similar experience to keeping seizures at bay. I am not at all frightened by the seizures, in fact a few years ago we had more than 500 seizures a year and we are now down to 30. Sleep is a huge issue and no drug thus far as helped (clonidine, anti-depressent, and others). I am not depriving my son of sleep but, simply not letting him get into the deep sleep where another seizure will happen. We have done many many different med and the current med is probably the best (ie 30 seizures vesus more than 500 in a year). I will definately look into the lorazapam b/c I do not think we have tried this. I know the diastat works but after talking to my husband, my son is out of it for 4 days. Just not worth losing 4 days of his life. I realize we are now lucky not to have to deal with as many seizures but, he also autism that we are dealing with.

 

[epileric]

the diastat puts him in a funk for 2 or 3 days where he is out of it.

How do you know it's the diastat & not the fact that you don't let him get any deep sleep?

Deep sleep is very important after something that takes soooo much energy. I would highly recommend not waking him. I know I would be in a funk for a few days if I was woken every 15 minutes & not allowed deep sleep after convulsing.

 

[Kimberly H]

I know it is the diastat b/c for years I let him sleep as long as he wants and gave the diastat to stop the seizures. He was out of it for up to a week. He is not in a "funk" when we keep him out of deep sleep. This keeping him out of deep sleep idea was just started recently when we went on vacation and wanted him to enjoy it and it worked. He had a seizure at 6am and by mid day is was alert and not in a fog. The rest of the vacation was great. Had I given him the diastat he would not have enjoyed the remainder of the vacation. I realize with these posts it is hard to articulate all the facts but just trying to share and get opions and thought our experience could possible help someone else. The hard part about epilepsy is that it is so much of a guessing game along with trial and error with meds and diet (we even did Keto for more than a year with inital good results then back to the same).

 

[Nakamova]

Hi Kimberly --

It's great that you've been able to reduce the seizures form 500 to 30. The trial-and-error-part is no fun, but it sounds like by keeping close watch you have made great improvements. Is there are any chance your son could try neurofeedback (don't know what age/temperament he is)? It might prove beneficial over time.

 

[Kimberly H]

great idea, I would love to try that. He is 15 with moderate autism but, very calm. Any ideas on a Chicago suburb neurofeedback option?

 

[Nakamova]

In this thread...

http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/index2.html

...there was a mention of an article in the Chicago Tribune about neurofeedback. The article quoted some Illinois practitioners, so maybe you could start there or with Northwestern's Institute for Neuroscience (referenced below):

From the Chicago Tribune article:
... Cognitive disorders, such as attention-deficit disorder (ADD) or anxiety, show up as aberrant brain waves.

"By consciously reshaping the aberrant brain-wave pattern, the patient retrains her brain, thereby reducing symptoms while enhancing concentration," Bonesteel said. "Conscious control becomes unconscious control as a result of positively reinforced repetition. The brain learns to regulate itself."

Depending on the condition and its severity, neurofeedback treatment might take 20 to 40 or more one-hour sessions. But positive results seem to stick.

Dr. Elsa Baehr, director of NeurQuest Ltd. in Skokie, has treated people with neurofeedback therapy for 15 years. "We have data on patients 5 years, 10 years, 13 years after treatment," she said. "The condition is holding. They're not depressed. It's been a very effective treatment."

Dr. J. Peter Rosenfeld, professor of psychology at Northwestern University's Institute for Neuroscience, worked with Baehr to develop the original protocol for treating depression with neurofeedback. Despite what he calls "pretty impressive" clinical results, he insists that more control-group research is required.

...

Bonesteel agreed that it's not a panacea but noted that neurofeedback, used as part of a multifaceted treatment plan, improves a variety of specific cognitive impairments besides depression, ADD and ADHD. In his clinic, he helps people with insomnia, traumatic brain injury, post-traumatic stress, chronic fatigue, mild autism and epilepsy -- often without medication. Research indicates that neurofeedback produces some of the same brain-wave changes as drugs used to treat ADD and ADHD.

"You can chemically condition the brain with pills or do it with neurofeedback," Bonesteel said. "But neurofeedback trains more specifically than pills, without the side effects. It also changes the brain for the better in an ongoing way."

 

[Ori]

I have noctural seizures too. My seizures started during the daytime, shortly thereafter progressed to night, and have stayed that way. Usually I'm awake when they occur (often as I am just settling down to go to sleep or getting up) but they do happen during sleep sometimes.

I absolutely feel I *must* sleep after the seizures hit. But that is me and my biology, not your son.

Have you shared with his doctor how you handle the seizures (waking him up?) If so, what does the doctor say? It sounds to me as though he may benefit from a change of medication too.

 

[Kimberly H]

Thank you. Honestly we are on the 4th or 5th Doctor and none of them have been able to find a med that eliminates the seizuers and this is the best it has been in 10 years although not perfect. The Felbatole is the best thus far. We have tried so many with varying side effects that I hate to try a new drug.

I want to re-iterate that I am not depriving Brenen of sleep but, simply waking him up for just 5 minutes or so to hydrate him and keep out of the deep sleep (in my mind this is only when his seizures occur).

Still stuggling with the GARD diet. The fruits and vegtables are easy but, too much for my son causes diarrhea. I did find out he loves goat cheese and found it at a local store for $3 for 3.5 ounces (I think this is a good deal, WH was $9 for 6 ounces). Can anyone explain why rice is restricted? Thank you all.

 

[Nakamova]

In general, grains are high in aspartate and glutamate, which are to be avoided since they mimic excitatory neurotransmitters in the brain. Wheat and oats have the most, but corn and rice also have a fair amount.