"Parenting" a 23YO daughter with grand mal seizures

@adoptivemother
I’m sorry to hear of your daughter's seizures.
I’ve had epilepsy for 58 years and have had thousands of seizures.
Your daughter needs medical identification because of the unpredictability of seizures.
I have belonged to the MedicAlert Foundation for nearly 60 years.
https://www.medicalert.org/
I like MedicAlert because they have a database where members can store medical records/legal documents and call family/friends when necessary.
Many people with epilepsy, especially when young people engage in risky behavior. I certainly did and now I shudder to think of the foolish things I did.
I decided early on that I was going to live as normal a life as possible but I didn't make the best choices. Although I have lived alone since 2019 after my mom passed. I recently got a roommate and feel safer since I was found unconscious in my living room last May by friends. Seizures usually resolve on their own and don't normally need emergency medical intervention unless they last longer than 5 minutes (Status Epilepticus, when seizures don't stop on their own) or are unusually severe, or have breathing difficulties or injuries.
What seizure meds does she take?
I have only had one Aura (which is a Focal Aware seizure.)
Just because she's always had auras doesn't mean she always will. Seizures can change in type, frequency, and severity. I had absence, focal awareness, focal impaired, tonic-clonic, and convulsive Status seizures.
I had intractable epilepsy for 45 years but my last Neurologist changed my medication to a time-released formulation and it controlled my seizures.
It is recommended if she takes generic medicine to always get refills from the same manufacturer. You also might consider an anti-suffocation pillow since her seizures are so frequent which increases the risk of S.U.D.E.P. (Sudden Unexpected Death in Epilepsy.) Fortunately, this is rare. Perhaps she needs to see a counselor or psychologist to help with the suicidal ideations.
She may also want to consider a seizure monitor for her bed, just another precaution.
Best of luck to you all,
Jake
The photos below are of my MedicAlert seatbelt ID holder and my ID on my watch band.

Oh wow. You have lived through a lot. I really appreciate the photos and information on the MedicAlert-that is the one I was investigating and maybe it will help her to see other people use them and what it looks like. Do you drive or is the seat belt holder for use as a passenger? If you drive, how do you manage that? We had been letting her drive because her neurologist wrote a letter stating she could and it had been so long since a seizure. Thank goodness she was at home last week when she had three.

Her doctor had prescribed a time release med but insurance declined it. I just don't understand how insurance companies essentially replaced doctors in decision making.

Thank you for taking the time to respond. This is a scary path to travel and no one else in my circle has any understanding of it.

Heather

Hi @adoptivemother
I am very sorry to hear what you have been through with your daughter.
@jakedduck1 has a long experience with epilepsy and has much to share with all of us. I am happy he has already answered you :-):-).
Accepting one's epilepsy can be something quite challenging. I was diagnosed with epilepsy in 2019 at 48 years of age (though I have lived with it since my teenage time without knowing it). Accepting my epilepsy: giving up my job, changing my routine, undergoing treatments with lots of side-effects, etc was a big challenge I would not have won without the support of my neuropsychologist. I was the turning key to being able to restart my life and smile again. My neuropsychologist has also given support to my husband, which has also been extremely helpful. From your post, I feel your daughter has not yet fully accepted her epilepsy. Have you and/or her doctor considered the support from a psychologist or neuropsychologist to help her in this phase?

Continuing Heather...
As @jakedduck1 has well shared seizures can change in type, frequency, and severity throughout life. I have had auras and focal impaired awareness seizures since I was a teenager, but they did not affect me much. I was absent for a few seconds and "came back" as if nothing had happened. I went to university, did my master's, worked, and had a normal life. But this started to change in my forties, seizures became stronger and more frequent. Focal impaired awareness seizures became more frequent and I took a while to "come back", until my epilepsy had clearly shown its face.
Regarding watches, I have read that are today watches that can detect tonic-clonic seizures. I do not use them, as my seizures are mostly focal ones and not detected by those watches. Perhaps others here in our group can share their experiences with you? What I have been considering is to have a seizure dog one of these days when I move into a house. I have read that a well-trained seizure dog, can sense and alert a seizure coming before it happens. However, I use a smartwatch that measures my sleep, stress levels, etc, helping me to manage better my seizure triggers. As @jakedduck1, I also use an ID bracelet, it gives me a feeling of some security.

@adoptivemother
Being treated by an epileptologist instead of just a neurologist also made a huge difference, which I understand you are already doing. Through my epileptologist I have discovered that my epilepsy (temporal lobe with mesial sclerosis on my hippocampus left side) is refractory (drug-resistant), explaining why I had such a hard time with medications during the first two years of my treatment, not controlling fully my seizures and suffering a lot with the side-effects of medications. Around 1/3 of people with epilepsy have refractory epilepsy, being this percentage even higher in some types of epilepsy. Has your daughter's doctor considered this option? Surgery was then recommended to me. But thankfully, I went to see a second opinion from a neurosurgeon who was against it and recommended me an epileptologist. Today, I treat my epilepsy through Epidiolex (medical cannabis), diets, trigger management, having seen a lot of improvements.
Last but not least, nasal rescue spray could also bring some comfort and security. It interrupts the seizures. I have used one made of medical cannabis (which is not yet allowed in many parts of the US, I live outside the US), but you have other options in the US such as Nayzilam. I am copying here a link with more information on those medications: https://www.epilepsy.com/treatment/seizure-rescue-therapies/nasal-rescue-medicines
Wishing you, your daughter, and your family better days!
Chris (@santosha)

I had a seizure risk from a craniotomy done may 2014 due to access in my left temporal lobe from bacterial meningitis of my brain. My eeg now shows a breach rhythm which is abnormal but non epileptic. In all likelihood I will remain seizure free. I have never had a seizure in 10+ years. I am a retired nurse. Was RN. I have to ask is your daughter really an adult? Seizure activity causes brain damage. I have also had trauma therapy so I learned about personal vulnerabilities boundaries saying no etc. It is hard to learn not to put yourself in harmful situations. Especially when it requires looking at yourself. My current neurologist at my last appointment in September shared with me he goes to court for some of his patients who have violated their limits similar to your daughter. Some of his work is patients who are non compliant with medication driving laws etc. Is it time to consider placement for your daughter? Very hard question .

I have a Samsung Galaxy 4 watch that measures my heart rate heart rate variability can do an ekg

Insurance companies in terms of cost aka greed have unimaginable power. I have had a medicare advantage plan. On 1/1/25 I will be in origional medicare. I paid for my own prescriptions because they have denied to send me my medications including my anti epileptic drug..Take all precautions necessary. They no longer care.

I want to write about my current situation. I have been putting my health and continued seizure do to my husband his beliefs etc. He always watches the news thinks everything is falling apart etc. He denies this but expects and thinks everyone should follow the news. Otherwise he said where do you get your opinions. Very stressful for me. I made an error people pleasing here. We get into yelling but my point had always been this is too stressful for me. Yelling not good on my part but he is not listening. Nor do I ever expect him to. Any way. I absolutely will not ever discuss current events or the news with him. Ever.I am mad at myself disappointed in myself because again my life partner has no respect for a neurological disorder. No he will not get counseling will not get couples therapy. This is all my problem.

@adoptivemother
@kb2014
My personal belief is that placement usually only helps the person who is doing the placement.
Sure seizures have the capability of causing damage, but it's not that common. Damage usually only happens when your seizures last a long time like in Status Epilepticus. It sounds, and of course, I don't know but perhaps she hasn't accepted her Epilepsy. I know it's not always easy to accept but those who do lead a much more rewarding, happier, and easier life than those who choose negativity, and depression and who feel sorry for themselves.
I wonder if your offer of helping her find a house and allowing her to live more independently would help.
Like @santosha mentioned I believe a psychologist or neuropsychologist may be very beneficial if she'd be open to such help. She needs to control her life and not let her Epilepsy control it.
Take care,
Jake