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.

@annestudio i have a sister and a best friend of almost 50 years that I am very close to and have walked side by side with me through this. I definitely would not have survived without them.

@annestudio age is irrelevant when it comes to service that you're paying for. If you're paying for service and not receiving it, stop paying for it. Find a different doctor and trust your gut when it comes to their service.

Good Morning @annestudio
If I understood you correctly, your wonderful epileptologist is no longer seeing patients since becoming Dean of a Medical School. Even so, it might be worth reaching out to him directly to ask whether he has any recommendations at Mass General. A trusted colleague's referral from someone of his standing could open the right doors.
Wishing you the best of luck with this!
Chris

Hi @annestudio !
I share the same view as @absentsenior. It might well be worth reaching out to your previous epileptologist to check if he has a referral to offer.
Chris

@jakedduck1 may I ask if you know the cause of your seizures?

I am an adult with absence seizures. I have one about every 4-6 months.
Would you like to share any other information about yours, such as how long they last and if anyone has observed them, what do they say your behavior is like during one?
How is it effecting your life?
How do you feel right before one occurs?

@msaneurysm
No, I don't know for sure what caused my seizures. Perhaps a head injury when I was a kid. I believe my friend hit me in the head with a baseball bat but I have no recollection of that incident.
I developed generalized tonic clonic seizures in my early teenage years. I started having daily tonic clonic seizures along with absences (although not often and focal aware and focal impaired seizures. At age 14 or 15 I went into Status Epilepticus for the first of many times resulting in induced comas to stop the seizures.The longest was 8 months.
I had a difficult time accepting my seizure disorder. It took me about 2 years to come to terms with my new normal. I was kicked out of school. I understand they had no choice since I was either seizing, post-ictal or asleep. I wasn't conscious long enough to be able to study or learn anything so there was no reason for me being there. When I had a seizure someone would come pick me up, take me home and I would sleep until time to go to school the next morning and then it started all over again. I went to a couple of psychiatrists
who I believe were escapees from an insane asylum. They were crazier than I was and were only guesing about the cause of my seizures. I resented them guessing. I went once to each psycho psychiatrist, and never went back.
After the first two years I accepted my epilepsy and didn't let it affect my life. I swam 5 miles a day until multiple surgeries on my shoulders interfered with range of motion and my freestyle swimming ability.
I used to have absences also along with focal awareness & impaired seizures but most frequently my seizures were tonic clonic with no warnings. Just drop and out. I had seizures lasting from about 2-3seconds with occasional 20-45 second (absences) up to 20 minute (tonic Clonic) & convulsive status epilepticus seizures.
It's very sad how many people can't come to terms with their seizures. Those people suffer unmercifully with stress, anxiety, and depression. Some say stress is the most often reported seizure trigger with anxiety and depression lowering the seizure threshold. I know a man who refuces to come out of his apartment because he doesn't want anyone to see him during a seizure. And then there is the stigma of epilepsy. It's amazing how many ignorant people there are and how they put others with epilepsy down to build themselves up. And those who make cruel remarks like, "people like that belong in a circus" and those who equate people with epilepsy with the devil, and the religious folks who invite you to church to perform an exorcism and rid you of demons that are causing your seizures. I was told by a potential employer "we don't hire cripples" she tore my application in half and threw it in the garbage. When I have a seizure, I just fall to the ground since I usually have tonic clinic seizures and shake like a fish out of water. I actually think some people enjoy watching others suffer. I've had over 13,300+ seizures in the last 60 years. My last seizures were in the spring of 2024 because my doctor refused to refill my medication so I ended up in the hospital and had six seizures. When I got out of the hospital, I went and got my medical records and believe it or not they said "patient was noncompliant with his medication. Go figure??
Anyway, I'm sorry you're having seizures and I hope the doctors get them under control. Have you tried Zarontin or Depakote for your absences. Granted they are first generation meds but just because is old doesn't mean it's not effective. I take Carbatrol and Phenobarbital that control my seizures, both first generation drugs.
What medication do you take?
Blessings,
Jake

@msaneurysm
Sorry you asked if I wanted to share?, lol🤣
Take care,
Jake