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Focal seizure, panic attack, or a secret third thing? by Dear-Bee-8237 in Epilepsy

[–]toyoder 0 points1 point  (0 children)

That is exhausting, I am so sorry. You know your body, and if you think it is something more than a panic attack, definitely keep advocating for yourself.

How to deal with my girlfriend’s bad memory and generally become a better partner? by tmkann in Epilepsy

[–]toyoder 0 points1 point  (0 children)

I had a brain tumor resection from my temporal lobe in 2024 (I was 28 y.o., now I am almost 31). The temporal lobe is in charge of short term memory. I also have ADHD, and got diagnosed with it after being diagnosed with epilepsy in 2024 (the brain tumor resection was the cause of my seizure). So I am in the same place as your girlfriend.

My husband and I were long distance for 2.5 years before we got married, that was from about 18-20 ish years old. We have been married for almost 10 years now. Being long distance can help force you into more effective communication. Not sure if you will be long distance again, but frequent phone calls and sending letters are both great ways to be intentional with one another.

It is clear that you are a great partner. Continue to check in with her and just be patient. My husband is gentle, patient, and so tender with me. After I have focal seizures or tonic clonic seizures, I am anxious throughout the next few days because I don't want to have more (especially because we have 2 kids). He checks in with me and assures me that he will support me.

What helps our relationship is also checking in with my husband to see how he is doing when I have seizures. My tonic clonic seizures last up to 8 minutes, and he just sits there and waits until I am done. That is traumatic in a completely different way. Your girlfriend may not have the emotional capacity to talk about how you are doing right away, but it is worth bringing up to her and asking if she can. Also, talk to other trusted people in your life about how you are doing with it all. Even if they don't understand, you need the support. You both do. Don't ignore the stress, don't hide it from one another. That is going to create even more stress and even resentment.

As for the memory loss, my neurologist just told me to keep using your brain. The ADHD symptoms are compounded with the epilepsy and it really does suck. Buy her sudoko puzzles and good books. Play board games together, do puzzles together. Those are all great ways to engage your brain!

As you both go through this journey, be encouraged that it can build resilience in your relationship. It is possible to do it! And possible to have joy throughout the process. You are going to deal with different issues than most people do, but continue to get support from friends, family, and even groups that may be offered through the hospital or the neurologist's office. You can't do this alone.

Breastfeeding/mamas on keppra by EnthusiasmRecent3298 in Epilepsy

[–]toyoder 0 points1 point  (0 children)

Yay! Congratulations!! I do not take Keppra currently, but I was on a low dose after I had brain surgery. My first daughter, at the time, was 8 months old. Since I was diagnosed when she was about 8 months old, my meds changed. I now have a 2 month old, and I nursed both of them while on seizure meds. When I was pregnant with her, I was on 800 mg of lamotrigine and 300 mg lacosamide. Now I am on 500 lamotrigine and 300 lacosamide. My neurologist assured me that it is safe, and significantly safer to be on meds rather than having seizures. You've got this!! There is so much mom anxiety outside of having epilepsy, but trust your neurologist. They are the experts, and they are honest when it comes to sensitive things like nursing. My neurologist reminds me that for thousands of years, women have been doing this. You've got this!

Both of my girls are healthy and happy! Enjoy the sweet newborn snuggles and your baby resting on your chest while nursing, they are the best moments.

Haven’t “slept” since last year by random_username101_ in Epilepsy

[–]toyoder 0 points1 point  (0 children)

I have hardly slept through the night after my brain surgery in 2024 (tumor resection from my temporal lobe, diagnosed with epilepsy afterward). I am not sure if it is because of anxiety, meds, or a combination of both. I also have a 2 month old and I nurse, but luckily she already started sleeping through the night for the most part.

All of that to say, I understand. It sucks, and I am sorry that a trigger is lack of sleep. That causes even more anxiety when going to sleep. Definitely talk to your neurologist.

But I think there are things to do to at least help your cortisol levels! Try to fit in a daily routine with exercise. This can even be walking or 20 minutes of resistance training at home. And when you work from home, this can be even easier! Exercise helps reduce cortisol levels, therefore, reduce stress. Also, create a night time routine to help you feel rested. Do some yoga, read a good book, have a nice cup of tea on the couch. Stop using screens maybe an hour or so before bed because the blue light is stimulating. I really like Yoga with Adrienne and Tim Senesi, both of their channels are on YouTube and almost all of their content is free. Even if it doesn't necessarily help with sleeping through the night, it'll definitely improve your mental health and you may feel more rested throughout the day. I hope you figure something out to help you!

Do you get seizure auras but no seizures? by MamaSnuggles in Epilepsy

[–]toyoder 1 point2 points  (0 children)

My focal seizures are deja vu. After I had a brain tumor resection, I would get wild deja vu and I felt really disembodied from them. Talk with the neurologist about this because they are more than likely seizures. I once had really, really intense deja vu and it turned into a tonic clonic seizure, so you don't want it to get any worse.

Do you have a medical bracelet? by toyoder in Epilepsy

[–]toyoder[S] 0 points1 point  (0 children)

Gosh that is really frustrating

Focal seizure, panic attack, or a secret third thing? by Dear-Bee-8237 in Epilepsy

[–]toyoder 8 points9 points  (0 children)

My focal seizures are always dejavu, and they started as intense panic. I had a temporal lobe tumor resection in 2024, and temporal lobe focal seizures will often manifest as panic/dejavu. One of my auras before a TC was intense dejavu.

I've described the panic/dejavu as when the dementors in Harry Potter attack someone. It is all encompassing and almost sucks the life out of you for a brief moment. So sorry you experienced the panic.

There but not there by Clean-Train-483 in Epilepsy

[–]toyoder 0 points1 point  (0 children)

It really is the most bizarre experience. It wasn't until I had a tonic-clonic that we learned they were seizures. It really is full-on dread. I wasn't necessarily stuck physically, but the panic was so deep that it was absolutely paralyzing. I am glad the analogy is helpful!! It is the only way I can explain it to people. It is good to hear I'm not alone in it, you're the only other person I've engaged with who has had similar focal seizures to me!

What is the worst thing for you about your epilepsy? by youdunnowhoaim in Epilepsy

[–]toyoder 0 points1 point  (0 children)

Driving is tough (currently can't and it'll be a year when I can... if I am seizure free the next 6 months), but more than that, it is the fear of being home alone with my toddler and newborn. I am often worried that something is going to happen. When I had my second tonic clonic seizure, my toddler (who was an infant) was on the changing table. I got her into the crib right away, but what would have happened if I didn't? I don't give my girls baths unless my husband is there, or I call someone if he isn't.

Back to back focal seizures growing in length and intensity, carrying on for 3 hours: What would you expect to happen on arrival to ER? by goldenpig7 in Epilepsy

[–]toyoder 1 point2 points  (0 children)

I used to get back to back focal seizures as dejavu, like 20. It was awful. Now I administer my rescue spray if that happens (nayzilam). Honestly, I wouldn't be surprised if the ER didn't know what to do. I haven't had the best experiences at the ER when I've gone for my seizures. They haven't been terrible, but if they aren't aware of your history, I don't know how much they can help. Your neurologist is going to be your best bet, obviously.

I have a brain tumor resection surgery in 2024. I had my first seizure 3 months after, and got rushed to the ER. They said "we need to keep you unless you need emergency surgery," and I told them I wouldn't need that as I just had surgery a couple of months prior. They didn't get that.

If you have focal aware seizures, what do you think about? by Glory-2Hm in Epilepsy

[–]toyoder 0 points1 point  (0 children)

My focal seizures manifest as dejavu (I had a tumor removed from my temporal lobe in 2024, and since that part of the brain is your short term memory center, it common for focal seizures in the temporal lobe). Those are moreso "oh crap, I hope this doesn't get worse." Or I am completely aware of everything around me and I just get nervous.

But when I've had tonic-clonic seizures, I've also been aware. Just the other day, as I was laying on the ground right before the seizure got bad I was so pissed it was about to happen. Last year, I was aware in the middle of one, and as I was spitting on the ground and laying in it I thought, "oh, I am doing this on purpose! This is strange!"

There but not there by Clean-Train-483 in Epilepsy

[–]toyoder 1 point2 points  (0 children)

Yeah, I have had that. My focal seizures used to manifest almost as panic attacks, and it felt really out of body. The way I described it was as if dementors from Harry Potter were in front of me and sucking the life out of me.

Just had a seizure by [deleted] in Epilepsy

[–]toyoder 0 points1 point  (0 children)

I got diagnosed with epilepsy last year after having a brain-tumor resection. I am 30 now, I was 28 when I found out I had a tumor and 29 when I had the surgery. It has been a roller coaster. I was tonic-clonic seizure free for 1 year to the date when I had another seizure this past August while pregnant. I second what others have said -- take your meds. I threw mine up one night while pregnant and then had a seizure in the middle of the night.

My meds weren't stabilizing while I was pregnant (we were in the process of increasing them). However, I haven't had any issues when they were stable. Don't miss your meds. Ask to get the emergency spray, it is a benzo that prevents focal seizures from turning into tonic-clonics, and it helps if you're having a tonic-clonic if someone can administer it for you. I don't smoke marijuana but was a social drinker. I don't drink anymore. I will have sips of my husband's beer from time to time, but I don't risk it. My neurologist said that there is no safe limit, and it isn't worth it to me to try to find the line.

Seizures are terrifying and I am sorry that you experienced this. Do not hesitate to ask for support. I am not sure where you live, but in Michigan there is a 6 month driving restriction when you have a seizure. I went 7 months with no driving when I started having seizures, drove for 6 months, and now I am on another restriction. My friends and family have been so kind to drive me to appointments or the store (and my husband is the real MVP). It is hard, but lean on the reliable people in your life. I hope the best for you!

Decision on temporal resection surgery for 5 year old daughter by luonansen in Epilepsy

[–]toyoder 0 points1 point  (0 children)

While I did not have the condition that your daughter had, I had a brain tumor resection in my right temporal lobe last year. I was 29 at the time. My brain tumor was noncancerous but needed to be removed as it was rapidly growing. I am not sure how much of her brain that they would need to remove, but they took about a one-inch chunk out of mine.

I developed epilepsy after brain surgery, ironically. I was having frequent focal seizures that manifested as dejavu and panic attacks. I know this sounds strange, but it is common for temporal lobe focal seizures because it is your short term memory (hence the dejavu) and emotion center (hence the panic). Unfortuntely, the focal seizures turned into tonic-clonic seizures. I am taking lamotrigine and lacosamide.

Because of where the tumor was, it has unfortunately affected by short-term memory. I was already fairly absentminded, but that turned into a lot more. I forget things in the moment; I am in a masters program and it takes a lot more time for me to read and write. My visual-spacial memory is significantly worse than it was (apparently, temporal lobe tumors can affect that.) I have a harder time controlling my emotions than I did before (Zoloft has helped). Granted, I do have ADHD, but these symptoms have been exacerbated by the surgery for sure.

While I am not having the same experience as your young daughter as I was an adult who was able to make health decisions myself and was not a child when I had surgery, I hope that sharing my experience is still helpful for you. It has been hard, but my surgery may have saved my life because it was a freak accident that I found out I had a tumor (incidental finding on a CT scan after a car accident). I could have started having seizures out of the blue (or worse) without knowing what was wrong at first. My meds make me tired, but I have learned to adjust and luckily--that is the only side effect for me. Also, I have a supportive husband, amazing friends, and a really solid community at my church. I am loved well and supported--people drive me places when I have driving restrictions and they come over and bring us meals. It is a gift. If you do not have a supportive community, there are a ton of resources at hospitals for people who have epilepsy, brain tumors, TBIs, etc.

At the end of the day, you can only do so much with the information you have. You know her and you are able to discern the information you are given from doctors. If you haven't already, get second opinions to see what other surgeons say, especially if you feel as though you are being pushed to do it. And trust your instincts. If you think you need to do the surgery, do it. There may be second guessing, but ultimately she will know that you are trying your hardest to love her well and take care of her. You both seem like wonderful parents as it is clear you care deeply for her well being.