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

Hello,
My son, who is 23 years old, has had several nocturnal seizures over the past few years. They all seem to stem from issues related to oxygen-levels (in my opinion). The first two occurred after taking allergy and cold meds in a short period of time, with some alcohol consumed later that night. He was hospitalized and kept under observation for 2-3 days but testing didn't reveal the cause. Additional testing by a neurologist also came up empty. He was prescribed Keppra and was seizure-free for 3 years. The next seizure took place during our 2nd night in another country after a long flight from the U.S. The next seizure (more severe) occurred the same night we returned back to the U.S. after an 11 hour flight. His Keppra was increased after that. He went seizure-free for 7 months until an evening of vaping seemed to trigger another seizure (no other explanation, in my opinion). He again had been seizure-free for about 6 months until recent air travel - a 5.5 hour flight over 3 time zones; during the 6th night of our trip, he experienced a nocturnal seizure just after falling asleep but we brought along Nayzilam and was able to use it to help mitigate the duration of the seizure. I found a research study which indicated that people who have a seizure disorder have a higher likelihood of a seizure within 7 days of air travel so we are now trying to determine if there is something we can do to eliminate these travel-related seizures (without avoiding air travel entirely). We did take a 3 hour flight within the same time zone earlier this year with no issues. Thanks in advance for any info.

Hi, @robertm1215. Welcome to Mayo Clinic Connect. I merged your question about nocturnal seizures and their connection with long air travel and another discussion about nocturnal seizures into one to bring everyone together on the topic.

It's great that you are making detailed observations about your son's seizures.

Those who have shared in this discussion, including @jakedduck1 @jeffery @dawn_giacabazi and others, may have some thoughts for you about a correlation with long air travel and nocturnal seizures.

It's understandable you would not wish to avoid air travel entirely. You noted your son was prescribed more levetiracetam. What else did your son's neurologist say about the series of nocturnal seizures he's had close to long air travel, Robertm1215?

@robertm1215
My longest plane trip was 2 1/2 hours so I'm obviously not really familiar with seizures and air travel. The more often a person has seizures the more likely seizures happen. I wanted to go to Australia but because I usually had seizures daily to every other day I never went.
I would think if it were the difference in air pressure the seizure would happen during the flight or very soon after. Have you considered using oxygen during flight?
I'd think poor sleep, lack of hydration, and diet may be more likely culprits. Does your son usually have frequent seizures? Does he have sleep issues or anxiety? Maybe breaking up the trip to get better quality sleep. I wouldn't smoke, drink caffeine or alcohol prior, during or after the trip just to be on the safe side. You may want to see if the neurologist recommends additional medication for the flight since people's routines often change. If I did take a long plane trip I'd ask my doctor if a tranquilliser like valium or phenobarbital that have anticonvulsant and other anti-seizure properties would be helpful.
Best of luck,
Jake