Adults with absence seizures

@santosha
We’re in Western MA near Springfield and Northampton. We’ve been paying a “Conceirge” PCP, thinking we’d get better care. But She is slow in responding and seems not to be proactive in our care. Maybe if you are over ninety, intervention is useless

@absentsenior this must be extremely difficult to go through alone. Do you have any family or close friends who will be with you after the surgery ? of course you want your own self back.
I Meditate with a Zoom group and Meditation since to help me stay more emotionally stable through these trying and difficult medical decisions
Certainly hope modern medicine can help you. I am sending you big comforting. Hugs.

@santosha i'll apologize in advance and say I hate that question. With unaware seizures, you, of course, have no clue. Because I don't know if i'm having seizures or when i'm having seizures since I live alone.I've never felt a loss of time. I ended up coming to the clinic because I was losing long-term memory and after everybody telling me it was normal at my age. I trusted my gut and took myself to an neurologist, who advised me I had a seizure disorder.
When she retired, I applied to the clinic and thankfully, was accepted. And for the first time started getting answers.
The various medications for epilepsy have either been not effective or the side effects have been to difficult to live with.
Soon, I am being put before the committee for surgery to possibly implant a neurostimulator and will have an answer sometime in the next couple of weeks. Then I will have more decisions to make. Between the damage of the epilepsy and that of the medications, I am not the person I was and I want her back. At this moment in time, I only have to deal with social security and learning about Medicare when my epilepsy has affected my ability to learn new things. This should be a lot of fun.

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

Hi @annestudio,
A video consultation is a great idea — I've done that with some of my own doctors and it worked really well.
Is the epileptologist you were so happy with still practicing somewhere else, or has he retired?
Chris

@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.