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Adult Progressive Myoclonic Epilepsy

Epilepsy & Seizures | Last Active: Nov 26, 2020 | Replies (34)

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@mxyzptlk32

Hi Tena, I am very sorry to hear about your sons condition.

I have complex partial and tonic clonic (grand mal) seizures but am very fortunate they have not progressed to an extent that I notice. I was diagnosed at age 7, I am 65 now. My complex partial seizures show as what I call "twitches" around my mouth. About 30 years ago my wife complained of my snoring so I had a sleep study done. It was found I have borderline sleep apnea. While waiting for the insurance company to ok a CPAP machine I was given a loner. What I found is it reduced the number of complex partial seizures to practically none. My Grand Mal have always been well controlled with medicine. That was 30 years ago and was an eye opening experience for my sleep study doctor, my neurologist and my primary care. A CPAP machine was approved based on the epilepsy seizure decrease as opposed to the sleep apnea diagnosis.

I am not a doctor but am a strong advocate for CPAP. My triggers are sleep and sugar. The amount of quality sleep (Rapid Eye Movement) I get each night directly effects the number of seizures I have (that is my belief as we have never proven that with an EEG).

I have posted more information under a different group if you want to look. I think if you click on my name it will give you the opportunity to look at those posts. I hope some of this helps.

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Replies to "Hi Tena, I am very sorry to hear about your sons condition. I have complex partial..."

Thank you I will check all information and posts. We have considered sleep apnea since that is sometimes an inherited condition and my husband and oldest son suffer from this along with most of my husbands family but this isn’t something our youngest has although he is hypoglycemic like myself as well as my siblings and mother were and we battle that regularly especially with his swallowing issues limiting intake but he has done very well using ensure to keep everything stable so far when he’s unable to eat. His Myoclonics have him jerking near non stop so he is totally dependent on me for his meals, drinks and personal care although we do encourage him to try doing simple things to see if he can surprise himself and there are times he can hold a straw or piece of utensil but 98% of the time he is unable to do so . Some of this is also because of extreme fear after numerous injuries that resulted from the uncontrolled jerking including broken bones and broken teeth that resulted in dentures at 18. Sunlight ( requires complete eye coverage without making him blind and any home light above our new wattage of 15 triggers his GTC and progressive myoclonics but with the new light strength he is finally able to watch cartoons , talk and seems to enjoy our little fusses a lot better . It’s a constant roller coaster of emotions as frustration for him and us as parents trying to gauge epilepsy or fear and coming up with the best plan for either.