Living with epilepsy - Introduce yourself & meet others

@momofconcern
Hello,
I wonder if he could have post-ictal delirium, I’d ask the neurologist about that. It sounds like you need to go to his neurology appointment and find out exactly what the doctor believes is happening. I imagine he’s already had a CT or MRI scan and an EEG. It really sounds to me is that he would benefit from being admitted into an epilepsy center were they would try to get him to have a seizure so they could video it as well as run a constant EEG (VEEG.) all level 3 & 4 epilepsy centers have Epileptologists.

Most patients with postictal delirium do not require specific treatments, but simply need to be protected as their postictal confusion resolves. Patients need supportive care to avoid injuries; for example, windows should be closed and dangerous objects removed; bedrails with padding can be raised around the patient.
The third link is about Post-ictal psychosis which I don’t believe you fit with his symptoms but I’m no doctor.

Here is another reply from coping with Epilepsy.

Post-ictal delirium/aggression/psychosis is a known phenomenon, but there doesn't seem to be a lot of information on treating it at home. The articles below suggests that treatments to consider include treatment with pindolol (a beta-blocker), benzos or anti-psychotics, VNS, surgery -- none of which are without consequences of course.
A second opinion might still be helpful for the parent

1..https://pubmed.ncbi.nlm.nih.gov/31799509/

2..https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3175608/

3..https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265810/#idm140452567296896title

Jake

Hello! I have had complex partial temporal lobe seizures since 1996. I have had depth electrodes surgically implanted in both temporal lobes to determine the exact site. I had brain surgery following that surgery. Seizures were still uncontrolled. I had a second brain surgery 6 years later. Seizures remained uncontrolled. They only became nocturnal afterwards. No medication has ever eliminated them.

Hello! I have had seizures for 53 years. I've had brain surgery twice to no avail and been on many and almost all possible medications. I've never been seizure free. I've taken lamotrigine and Depakote for years. Approximately a year ago my doctor added Zonisamide. I now have one seizure a month. All are nocturnal seizures.

Hello my name is Cherie and I have a beautiful daughter Melissa who is 42 and has seizures. My husband and I are her caregivers.

Hello @cherieann57 and welcome to Mayo Clinic Connect. I look forward to getting to know more about you and your daughter. Can you tell us a bit more about your daughter? What type of seizures does she have? Has she had them since childhood? How are they managed?

Hi, I'm Linn. I have had partial seizures for over 40 years. I have tried different medications but none have ever stopped my seizures. Recently I tried Keppra and later Tegretol as add ons but neither worked and caused acid reflux. I have been taking Lamictal since 2004 because that doesn't have intolerable side effects but unfortunately does not eliminate them. I have tried neurofeedback and the ketogenic diet (which I was on for 1 year and quit due to acid reflux). Thought of maybe going to Mayo to see if someone there might be able to help with a cases where meds don't work.

Hi @heal33, welcome to Mayo Clinic Connect. It is frustrating to have medication resistant epilepsy.
Mayo Clinic experts in epilepsy care work together to provide individualized care to each patient. You can read more about epilepsy care at Mayo Clinic here: https://www.mayoclinic.org/diseases-conditions/epilepsy/care-at-mayo-clinic/mac-20350102

Fellow members @oyeks and @debirwin stated these discussions that may interest you:
- Seizures despite medication https://connect.mayoclinic.org/discussion/oyeks-1/
- Any experience w/ med: Oxcarbazepine (Oxtellar XR, Trileptal)? https://connect.mayoclinic.org/discussion/new-medicine/

Would you like me to connect you with other members who are also patients of Mayo Clinic?

@heal33
Welcome to Mayo Connect Linn, nice to have you with us.
Wow, 40 years of seizures with no control, unfortunately I know what it’s like. I’ve had Epilepsy for 53 years and frequent generalized seizures for 44 years. I’ve had some close calls during partials (Focals.)
Going to the Mayo Clinic Epilepsy Center and consulting with an Epileptologist sounds like the best decision you could make.
Here is some information on the Mayo Clinic Epilepsy Center in Rochester Minnesota.

Also if I were you I’d ask the Neurologist about DNA testing (Pharmacogenomics) for the best seizure medication and dose. Here is some information from Mayo Clinic.

Wishing you the best of luck,
Jake

Thanks for the info. I've never heard of pharmacogenomics.

Hi, I was diagnosed with epilepsy at age 7 and am retired now. I have complex partial and tonic clonic. The tonic clonic are well controlled and the same with complex partial if all of my triggers (sugar and sleep) are under control. I have had a number of medicines over the years ranging from phenobarbital to Vimpat. I spent most of my years on valproic acid. My complex partial, until the last few years, show as "twitches" around the mouth. Now I am getting hand "twitches" which is a side effect of the Vimpat. I may be returning to Keppra in the near future. Thanks for creating this chat area.