Nocturnal Seizures

Hello! I have had seizures for 53 years. They are complex partial right temporal lobe. I had brain surgery twice. Surgery did not stop seizures. Second surgery only made seizures nocturnal. I cry out my name and have a weird very scary feeling. People with temporal lobe seizures do weird things sometimes they say.

Hi ! Hope all is well w/you. 😊 My name is Dee I'm new to Mayo clinic..... my son is 22 and had no history whatsoever of seizures. Then out of the blue on Thanksgiving eve 2019.... in his sleep he first had a mild seizure, Then another and 3rd and 4th, back to back- all within around 90 min. Each progressively worse then the last.
He was obviously confused and not seeing what we seen, was reluctant to go to hospital. When he realized he almost literally bit his tounge off and that his bed was soaked ..... he went.
The tests came back normal and they gave him prescription and follow up appointment.
2 weeks in, meds made him groggy and forgetful. So he secretly stopped taking the pills. Only took 5 missed doses and I wake up in the middle of the night to his wife calling me hysterical saying he was having more seizures .

His house is only 5 minutes away, but he had another before I arrived ..... and a 3rd before his wife could finish telling me what happened. He had 6 that night (2 nights before Christmas) and the last was while he was trying to change clothes and he fell in bathtub naked.... EMT had to strap him to gurney before he awoke. He was taken to the hospital in ambulance.

lts been about a year no incidents.... because he Was taking his medicine. About a month ago he had stopped taking the meds again, this time instead of 5 days it was about 10 missed doses and again the same deal. In his sleep, back to back ..... 1st they are about 20 minutes apart, then each one comes little sooner and it's way stronger.

All the blood vessels in his chest in his face pop, doctors say he has acid in his blood from his muscles straining. He has the worst most severe kind of seizures you can have. Lasting up to 6 min or more! Our doctor says nothing is wrong with him.
How do we know if it's nocturnal or not? I'd love any insight you may have. Out of everyone posts, your story was most familiar.
Id appreciate any info at all- we really know nothing about any of this! Stay well

Hello @deeebeee and welcome to Mayo Clinic Connect. First of all, I am so sorry to hear about your son's seizures. This all must be very scary for all of you. I am glad to see that you found a member who's story connected to you. In order to seek their input and flag them of your interest to connect to learn more, you can simply use the "@" sign and then their handle to notify them (such as I did for you in this post).

Can you share if the doctor he has been seeing is a neurologist?

I was having nocturne seizures and when I was in my late 30s it got worse as well. I was prescribed Keppra as well and felt horrible so I was changed to lamotragin and it worked for about 10 years before having breakthrough-seizures. After failing the addition of Vimpat I was referred to Mayo for an extended eeg and they found a possible cause that I recently had surgery for. Mayo had been great to work with and I would suggest an appointment with them to see what they can do for you.

@jeffery
Good Morning Jeffery,
Just curious, have you had any seizures or Auras since you are surgery or any surgery related problems? Would you mind sharing what part of your brain they operated on?
How often did you have nocturnals?
Good luck,
Jake

I couldn't really say how often they were until my now wife woke up to one and I woke up in the hospital. I kept waking up feeling like a train ran over me for a while before that, back pain bitten tongue.
Mayo found a small encephalocele on my right temporal lobe during my extended eeg stay and a after a syscom test. They operated the beginning of February with a laser ablation to cut it off. I have had a couple of incidents but not unexpected since I just had brain surgery. Since then I've had less breakthrough-seizures as recovery goes on. I have some followup appointments coming and more imaging to come.

@jeffery
Heres to a seizure free future. Congratulations on what will hopefully be a 100% successful surgery. It’s does my heart good to hear about successful Epilepsy surgeries. They are also encouragement to others.
I hope you will keep us informed on your progress, please.
Thank you for writing, don’t be a stranger.
Thanks much for your contributions,
Jake