Adults with absence seizures

@santosha we are in Western,MA. Our wonderful Epiliptologist in Boston closed his practice and now that I’m the only driver, Boston is too far away.
But,I haven’t looked into whether we can get a zoom consultation.
Thanks for inspiring me to keep looking

Hi @annestudio
So sorry to hear the ER experience your husband faced.
Since neither your husband's neurologist nor his PCP seems interested in reviewing these videos, I would encourage you to seek a second opinion.
Where are you currently located? There may be other members in our group living in the same region who could recommend an experienced neurologist in epilepsy, or an epileptologist.
Chris

@jakedduck1
I have videos each of these “seizure-like” incidents and neither the Neurologist or the PCP were interested in watching! I have stopped taking my husband with me to live theater performances because we are afraid of the disruption it would cause.
Once he had one. In a supermarket while standing on checkout line on his Walker. Since he could not respond to instructions to move forward or anything— the supermarket personnel called police and 911. Big scene; ER. He became conscious again while in ambulance but they had him inside ER by the time I arrived in my car!
They gave him Versed, which made him sensitive and uncooperative. The Hospital he was taken to has no Neurology department! He did not remember any of this!

@annestudio
Epilepsy is most common in young children with a dramatic increase in people over 60-65. Absence seizures in older people are common but not as easily diagnosed because unlike some children who frequently have 100 or more episodes a day. In older people symptoms are more subtle.
They may look like absences but may be focal impaired seizures.
Does your husband have any memory of the episodes? Has he had an EEG or MRI?
If possible, filming the potential seizure would be very helpful to the neurologist along with a thorough history from a witness.
Take care,
Jake

@adoptivemother I am 69 and developed focal unaware seizures after a stroke 10 years ago. I've tried various medications and Keppra caused depression and just made me a not nice person. I had an RNS device implanted just 1 month ago. Recovery from surgery has been less difficult than I expected. I didn't have to shave my head and simply cut my hair into a shag. You have to look very closely to see the incisions and once my hair grows back, they won't be visible. I have my 1st device programming this coming Friday. This surgery was offered in the beginning and I felt the same way. Today, I am glad I had the surgery. I'm still the same person I was before the surgery.

My daughter is 23 and has them. At first, that was all she had and they were very short and hard to notice. We didn't know they were seizures for a year or two. It is hard to tell when they began. Then, she began sleeping at weird times, falling down, and having memory issues. They mostly stopped when she began Trileptal but she was not consistent with taking it and she was in college and would go out drinking, which always caused seizures over the next 24 hours or so. She was still driving, despite us advising her not to, and she had her first grand mal while driving, causing a severe accident. They added Keppra and while that mostly stopped the grand mals (except when she would drink usually), she suffered from extreme depression and we believe Keppra was part of the problem. She doesn't live with me now but over the last year I witnessed many absence seizures that ranged from mild to severe. During mild ones, she can pick up where she left off and might feel nauseous afterwards. During severe ones, she feels extremely hot (and will sweat) and then cold, smells, tastes, or sees things that aren't there and can end up seeing a past nightmare play before her mind. Sometimes, she talks during them and tells me what is happening but other times, she is not aware at all. It really is crazy how different each seizure can be.

Hers are caused by an abnormality that is a neural tube defect, called an encephalocele. Mayo offered brain surgery as a potential cure but she turned it down, wanting to live a "normal" life as a 23 year old and feeling that brain surgery was too extreme.

Did your doctors find a "cause" for yours?

My husband began having “Absence Seizures” when he was 86. He still has them once in about 3 months. Neurologist refuses to give them a name diagnosis. But a nurse who was with us during one said they look just like the “Absence Seizures” her young daughter experiences.
I think we need to find an Epileptologist who has more insight into adults who have this condition. I hope you find a doctor with appropriate experience

@ambo2006 I totally forgot Keto is supposed to help seizures. Does anyone know why? I’ve had more seizures in the last week than I’ve had in the last couple of years. I’ve had my doses changed and it didn’t help. Boo! Maybe I’ll start keto After Christmas. It’s the one day a year where everyone is eating the egg casserole, the cinnamon pull apart bread, etc. and I eat a big piece of chocolate cake with my coffee. I’ve done this for years and my relatives. Still look at me like if they can’t believe I’m doing it and every year when they ask why I respond with, “because I can.” so much of a life is a choice. If you celebrate the holidays, I hope they are great, happy, healthy, and full of cake.