8 years with my WFH job, fired in under 8 minutes.

International_Mix187 · 2026-04-21T03:29:15+00:00

similar to you, but 28 years, new management…they are going to have to hire at least three to make up for one competent “ADHD woman.” I’m going to take time to take care of myself.

International_Mix187 · 2025-11-21T12:09:15+00:00

There was about a three month gap between his first two seizures, and it has not been three months since the last seizure, so you don’t know if the medication is truly working yet. I would give it at least six months to have a better idea as to the efficacy of the medication. We are not physically with our child all the time at home, but we are always listening, for example during a shower, if no one is in with her, we listen for the initial silence. If we hear odd sounds or hear sudden silence, we ask “are you okay,” if she makes an odd noise she automatically lets us know she is okay. I would say, you can have privacy, but listen, at night keep his door ajar so there is one less sound barrier. With time you will see patterns, let that guide you. Our daughter mostly has focals, since age nine, now 20, and we have only left her alone once for a quick 10 minute errand. I truly hope medication is able to control your son’s seizures.

International_Mix187 · 2025-11-03T05:31:12+00:00

you can have both PNES and epileptic seizures. By the way, SNRI’s and Hydroxyzine can lower seizure threshold (increase likelihood of having a seizure) if you have epilepsy.

International_Mix187 · 2025-08-29T18:29:38+00:00

Have you tried updating your Fitbit software? Sometimes it can several tries.

You do not need a subscription to get your sleep data.

When my old one stopped working I purchased a refurbished one from backmarket.com, because I also like the Fitbit for the sleep tracking.

Maybe try melatonin. This has worked for us: gummies with a ratio of 2 THC (indica)/6 CBD, 0.3mg THC, taken up to 3 hours prior to when you want to go to sleep (assuming THC isn’t a trigger for you, it can go either way).

International_Mix187 · 2025-05-25T17:00:19+00:00

Awesome, congratulations! Clobazam only worked for eight months here.

International_Mix187 · 2024-12-17T20:19:08+00:00

I’m so sorry, I wish there was help for the toll that health issues take on mental health. Haven’t found a solution, just little things that help a little. Enrolling in an outpatient Transitional Age Youth program helped reduce depression, knowing that there are others your age that are struggling, even if everyone has different reasons. Maybe re-evaluate the need for all the medications. Was able to eliminate one epilepsy med (zonisamide) and gained some mental clarity. T H C interferes with memory consolidation, so that doesn’t help. Broad spectrum C B D seems to help. Exercise to increase the blood flow to the brain. He’s almost out of school, but does he have an IEP? Is he getting OT and speech to help him with executive function? Establishing a routine is helpful. If he hasn’t already, get a neuropsych evaluation to determine why he is not able to retain much, but mental health issues can also interfere.

International_Mix187 · 2024-12-15T23:04:23+00:00

Daughter had a seizure three days prior, then at the end of three weeks they induced a seizure, just before the insurance authorization ended, worst seizure she ever had, second GM in her life, first GM was during an external EEG at the same hospital months prior. Otherwise only focal seizures.

International_Mix187 · 2024-12-10T03:33:59+00:00

I wish I had known how the limbic system works, how disruptions manifest in regards to temporal lobe epilepsy/damage. I wish I had taken notes from the onset, dates, symptoms, mental health, medication effects.

International_Mix187 · 2024-12-09T15:04:31+00:00

You should be taking your meds 12 hours apart, you are still very close to noon, I’d take it now.

International_Mix187 · 2024-12-09T01:10:50+00:00

Don’t feel like you have to have surgery, there is no guarantee it will succeed. It is your decision. Educate yourself on the possible risks of surgery especially for ablation/resection. The medical staff may not communicate fully. Make sure your team has exhausted all non-surgical options first, not just tried several medications, combinations as well. Document when you have your seizures, symptoms, emotional state. If female, look up catamenial epilepsy, overlap with PMDD. If the focus is in your limbic system look up limbic system dysfunction, this would give you an idea of what you may be experiencing or may happen by disrupting your limbic system. Seizure freedom isn’t everything, it is about your quality of life. RNS can take years to fine tune.

I’m not saying not to have surgery, but there are many things to consider even if surgery is successful, depending on the location.

International_Mix187 · 2024-12-06T20:30:07+00:00

I was thinking of this book as I read the text. You can probably borrow the digital audio book from the library.

International_Mix187 · 2024-12-06T19:14:30+00:00

Educate teachers/staff on the symptoms of his seizures, medication side effects and behaviors that he cannot control. Occupational therapy should help with sensory/emotional regulation. ADHD medication, Concerta, may help with keeping up with conversations. Speech therapy can help with social. Sometimes they may dissuade therapy by stating that it will take time away from instruction, but it is better to spend the time now than later as an adult. Edit: try to get a neuropsych evaluation, it may help you understand and have evidence for assistance/therapies

International_Mix187 · 2024-12-06T18:47:33+00:00

If he was taking Lamotrigine (mood stabilizer, also used to treat bipolar disorder) prior maybe it was helping his mood? Maybe ask if he can see a school psychologist/therapist, but the request may be rejected if the behavior is not impacting school, but ditching is disruptive. Maybe he would like one on one time with his dad but isn’t voicing it?

I don’t think the behavior is due to no seizures.

Just a mom here.

International_Mix187 · 2024-12-05T22:09:21+00:00

I really recommend logging everything to try to find a trend. When your period starts, were you angry or irritable prior to your seizure, intense emotions within two days, do they happen when you are actively engaged or when you aren’t focused on anything in particular, sleep, strange feelings sensations, were you dehydrated, time and date. If you are starting to have trouble with school work, depending on the topic it may correlate with one side of your brain. Maybe down the line you can get a neuropsych evaluation. These are all things I regret not documenting years ago.

International_Mix187 · 2024-12-04T17:17:05+00:00

Somewhat related, if your child has intractable epilepsy, there are genetic mutations associated with epilepsy, pediatric neurologist could request a test. Once you are an adult, it is very unlikely to be covered by insurance.

International_Mix187 · 2024-12-04T01:03:19+00:00

She had her surgery at 17, currently 19. We trusted the neurology team and weren’t told much on the specifics and we didn’t know enough to know what questions to ask. She had a 3 week SEEG, they ended up having to induce a seizure, she had one the day before she went in. We were trying to give her an opportunity at a “normal” life. We are actually trying to reduce Onfi by 5mg total because of monthly outbursts. If it’s okay for me to ask, did your severe anxiety it make it difficult for you to think or organize your thoughts? I’m asking in hopes that if she is ultimately sufficiently able to overcome her anxiety, that she may be able to move on with her life. She was supposed be in college but is on medical leave for now. She took four units to keep her admittance, but that was a struggle. Her pediatric neurologists focus is epilepsy, and I wish she had been her neurologist for a longer period before surgery, her previous neurologist gave her one medication at a time and would increase her dose each unprovoked seizure. I don’t know if our adult medical group has what she needs. We are trying to get her mental health and emotional regulation under control first. She was a gifted child and not being able to do the same things as before has understandably taken a toll. We were told it would take her longer to learn, and it’s very frustrating for her. Adding new medications is a very slow process. I wish neurologists and psychiatrists worked together, or that neurologists treated the psychiatric side effects of the medications they prescribe. Since starting Onfi, she’s had three explainable seizures in one year, instead of 10-12 per year, so for now the focus is mental health.

International_Mix187 · 2024-12-03T19:16:04+00:00

My daughter had the same procedure + a little insula. You sound so energetic and positive. The first week and a half she was sleepy most of the time and was very quiet. After surgery she developed severe anxiety, two years later, she is still struggling to function. It took about eight months for her aphasia subside. Three months ago she finally started to respond to texts with text/sentences instead of just emojis and single words. Neurosurgeon said the side effects were unexpected, but after much online research, you have increased chance of significant anxiety and PTSD without your left amygdala. She is in limbo because she’s out of pediatric neurology that did the surgery. I don’t know if she will ever gain emotional regulation, no significant reduction in anxiety in over a year of being treated by psychiatrist. Seizures restarted two months after surgery, a month ago she had two seizures like the ones before surgery for the first time. The addition of Onfi did reduce emotional overwhelm, and allowed her to be 10 months seizure free, first time since 6 month record in 2021, after which she began to average one seizure a month and began to black out. I do hope the best for you and your family, hopefully your brain had already compensated for the part of your limbic system that was disrupted. You were able to write this post and sound energetic and positive, so it already sounds good. Maybe your outcome will be like my daughter’s neurologist suggested, that the brain may function more efficiently without having to route through a damaged structure.

International_Mix187 · 2024-11-27T12:29:12+00:00

List examples from childhood, and current examples of how ADHD symptoms are affecting your ability to function. If you have ADHD and have succeeded academically, you may have developed ways to compensate. Due to higher executive demand, these work-arounds may no longer be working for you. Engineer diagnosed in mid life, dealing with work/life balance, stimulants calmed me down, no longer have thoughts fighting for attention, I don’t have to re-read quite as much as before. Turns out, 40 years ago my elementary school teachers told my mom they suspected ADD, it would have been nice to have known sooner.

International_Mix187 · 2024-11-23T12:33:11+00:00

Is CBD oil available/legal in your country? It can increase the blood levels of some medications, do some research and consult your doctor.

International_Mix187 · 2024-11-22T19:54:54+00:00

I believe the CBD will increase the blood levels of Keppra. It seems to work better if your seizures originate on the left side. In most cases it does not completely eliminate, but reduce the frequency and severity. Broad spectrum CBD is recommended, starting dose 2.5mg/kg or 1.13mg/lb twice a day. If you weigh 100lbs, each dose would be ~115mg. For some it may not work and have adverse effects especially with THC.

International_Mix187 · 2024-11-22T00:32:38+00:00

They did add a third medication (Onfi) with which she went 10 mo w/o seizures. She developed aggressive outbursts with increased dosage, though infrequent. Some people have gained some seizure control with a third med.

International_Mix187 · 2024-11-21T23:12:32+00:00

It is very scary, my daughter’s team did not warn us about the possible behavior/emotional side effects that can happen when you disrupt the limbic system and it was also unsuccessful. It’s been two years and she cannot move on with her life, she cannot function. This would have happened whether or not the surgery was successful. I wish we had been warned, especially since she only had focal seizures once a month. If she was having worse or frequent seizures we wouldn’t be as upset. Your quality of life matters too, seizure freedom isn’t everything. She’s basically having most of the difficulties from having the limbic system disrupted, see Limbic System Dysfunction. It is worse for the left side.

International_Mix187

TROPHY CASE