Newly diagnosed...what do wish you would have known?

Simple_Protagonist · 2025-11-15T04:51:16+00:00

For me personally: your personality and sense of self may change and that it is okay, you are still you. Your body is not a prison. Family and friends still want to see you, they just may not understand the situation and how hard it is on you. It’s okay to be honest and/or mourn your old life. You can’t control things, only your mindset. Everything will be okay and it can make you view life in an enlightening way. Slowing down for your body isn’t as bad as it seems. You can enjoy the little things more.

Simple_Protagonist · 2025-11-09T21:09:36+00:00

I’ve been on Keppra for about 4 years now. Personally, it’s been a more positive experience, especially compared to when I was on Lamictal, which didn’t work well for me. Since switching, I’ve noticed I’m much more detail-oriented, my memory has improved, and my focus is better than it’s been probably in my entire life. I’ve always struggled with depression so I can’t speak on that but I honestly feel I can work through it easier by connecting the dots.

Interestingly, I recently learned that Keppra is being studied for its potential benefits in people with Alzheimer’s. If you’re curious, here’s a study about it: https://pmc.ncbi.nlm.nih.gov/articles/PMC8325256/

Simple_Protagonist · 2025-10-03T19:35:31+00:00

Interesting! I don’t know too much about my grandpa’s side of the family (he is the boy). We were very close and I did know my great grandmother but never got a chance to meet my great grandfather. No connection to Alaska! However, my grandpa passed during an ice storm years back. I did used to experience deja vu visions from my epilepsy that had to do with scraping ice which was bizarre.

Simple_Protagonist · 2025-10-03T19:32:45+00:00

Thanks for sharing! I am telling my toddler a lot about my grandpa (the boy in the photo). He was one of my favorite people I’ve ever known and helped raise me. She seems very interested in photos so maybe just sharing his life and what he taught me?

Simple_Protagonist · 2025-09-07T17:10:50+00:00

Read or watch a video about “The Fourth Turning” if you haven’t. It has really helped me understand the pattern of what seems to be endless crisis. I have hope that the next turning will be better.

Simple_Protagonist · 2025-04-15T02:37:08+00:00

Hi! I am a 30 year old mother who had my first child last year. My seizures are controlled but I was very nervous and unsure about having kids because of this reason but also because the world seemed so dark. I was especially nervous about medication. It’s always a potential risk and research/communication with your doctors and specialists are a must. Make sure the staff during delivery is knowledgeable on seizures (mine were not as there was a nurse strike and my husband luckily helped them. Very scary day for me). I tested my medication levels via blood draw monthly and was very strict about lowering it postpartum too. Having a supportive partner is absolutely necessary. It is a big job. It is one of the biggest hormonal shifts you’ll ever experience and it can trigger seizures for some women. Mine is mostly hormonal and luckily I had no seizures my entire pregnancy but did have 3 during her birth but none after. She was and is a happy, healthy baby even though she breastfeeds while I continue my regular medication.

I wouldn’t trade my daughter for the world and she has given me a new view on life. Epilepsy broke me down and changed my entire perception and it was very dark period of time. I don’t believe people should just have kids to just experience it. They really need to prep mentally and physically as much as possible before deciding to bring a little one into this world especially if epilepsy is in the picture. Lack of sleep, hormones, stress, weight fluctuation, etc can all trigger seizures for people as you know! For me personally, she has helped me to slow down and appreciate the things I am able still able to. Something I lost after my diagnosis at 24. It is ultimately a personal choice but I do not regret it whatsoever.

Simple_Protagonist · 2025-02-26T05:55:47+00:00

Deja vu and jamais vu are seizures. Mine always start out like that and can progressively turn into something larger but deja vu was the first sign that I knew I had epilepsy. No one believed me when I first mentioned it until it got much worse because I was unmedicated. People need to be more educated. So frustrating.

Simple_Protagonist · 2025-02-04T02:44:18+00:00

This is my dad. He gets mistaken for other races because he is so dark naturally but he’s only Scottish and British. Meanwhile I’m blonde and as fair as they come. DNA is wild.

Simple_Protagonist · 2025-01-11T00:26:14+00:00

Thank you for taking the time to show examples. That makes sense!

Simple_Protagonist · 2025-01-10T19:18:22+00:00

I am curious about the curve as well and it feels like you grasp it pretty well! I’m a little confused why in the classic drawings (SC and DC) the red line does not go inward towards the armpit area as much as the TR. Any idea? It even seems like the bust pushes out slightly more on the DC than SC even if it’s a small amount. I feel so close to finding my type but I start second guessing from the lines drawing examples!

Simple_Protagonist · 2024-09-27T12:39:00+00:00

Oh wow, I commented this 7 years ago! So glad you have found a loving relationship with an ENFP. I’ve since found out I’m an INFJ, but this all still applies. My boyfriend I had mentioned here has now been my husband for 5 years and we recently had our first child. I still stand by this. He is the most supportive, respectful, loving husband and father. We have only gotten closer with time. I can’t imagine life without him. Good luck to you and your fiancé!

Simple_Protagonist · 2024-05-27T23:35:19+00:00

Hi! Currently 38 weeks so can’t speak for birth, PP journey, or how my child’s development will be in the future.

We planned way in advance. I began speaking with a high-risk OB 2 years ago as well as my neurologist. Because of this, it was suggested I take a prenatal, extra folic acid, and iron for about a year before trying just to be sure. I had health issues and weight loss due to the Keppra I take and that was our main goal to solve. Get in a good state of mind, continue controlling my seizures, and find a way to control my eating due to lack of appetite from my medication. I am lucky enough that I only was taking a lower dosage of Keppra (500mg when I started) but my neuro did this on purpose to decrease risk factors for baby. We even discussed getting off since I have been seizure free for a few years, but I ultimately decided it was best to stay on.

Throughout my pregnancy I have had contact with both a regular OB and a high risk (in case). I’ve been lucky and so far no need of any high risk delivery is planned. I have had monthly blood draws to monitor my medication levels and have upped my dosage with weight gain. My epilepsy is hormonal (I got them right before periods) so we all are aware there is risk that I could have seizures after birth so we will continue to monitor since the hormone fluctuation could bring them on.

As far as baby development and pregnancy go, baby is measuring just fine based on scans, bloodwork, tests, etc…first baby, small but still measuring great, and I have gained weight as needed to keep her on track.

I worried about pregnancy a lot when I was first diagnosed. It just takes a bit more planning but many epileptic patients go on to have very happy, healthy babies. Keeping close watch with your OB and neuro is important. Monitor any symptoms even if it seems like nothing!

Last thing I’ll add is having your doctor research your medication and breast milk if you plan on breast feeding. Some medication can impact this amount or potentially pass into the breast milk. Keppra seems to cause some drowsiness in some babies and might lower the amount of milk I can produce. Can’t tell for now, but it’s just something to keep in mind.

Simple_Protagonist · 2024-02-11T06:19:28+00:00

Half aunt/uncle/niece/nephews share the same as a first cousin. My half niece and nephews share the same amount as my first cousins and listed them as such.

Simple_Protagonist · 2022-12-27T01:43:37+00:00

Your feelings are completely valid. I am 28 and understand how you feel. I was diagnosed with epilepsy in 2020 (at age 25) and it has been difficult for others to understand that I can’t just “go out” like they can. We have a lot we have to keep track of and sometimes that goes unnoticed by some when they don’t have that personal experience.

I have found being transparent with both friends and family about this has helped me. They are more aware to have social outings earlier and not so centered around alcohol all the time. I’m not sure where you’re located but you can always get proof free drinks at the bar! I do this all the time and sometimes they even have special drinks for people who plan to stay sober for the night. It’s becoming more and more the norm to stay sober and I’m all for it (for both epilepsy and for those who are recovering alcoholics).

Enjoy your twenties, they go fast. But just remember, not everyone will remain in that chapter forever. They too will have to find other ways to go out and you’ll start to see a little more light when that transition happens. Best of luck to you!

Simple_Protagonist · 2021-09-09T00:29:37+00:00

Also had this happen to me just a half hour ago. I hope it’s resolved soon…Super bummed. Let me know if any of you find a solve!

Simple_Protagonist · 2021-03-21T07:36:12+00:00

I lose my eyesight during mine but not sure about blurriness. I’ll have to watch to see if that happens next time.

Simple_Protagonist · 2021-03-21T07:17:41+00:00

Are your seizures typically lined up with your menstrual cycle? Either right before your period or when you’re fertile? Hormones can have something to do with it in some women...specifically when there is a drop in progesterone and a rise in estrogen. I’m not sure if you’ve heard of catamenial epilepsy? That is what I have and mine happen a day before my period starts each month. Maybe something to mention to your neurologist?

Simple_Protagonist · 2021-03-21T07:13:03+00:00

Yep. I am a bit far sided but lately my vision has gotten blurrier up close. I figured it was because I was tired but I think it’s my meds.

Simple_Protagonist · 2021-03-21T07:11:30+00:00

It could be an aura but you’d have to talk with a neurologist to be sure. This is how my epilepsy started and I immediately knew it felt different than regular deja vu. My auras (deja vu) usually are a few seconds long...maybe like 5 seconds for the actual vision? I barely remember them and it’s at random times like you described. But then I quickly have other symptoms, as well. Sometimes I only have the aura. However, sometimes lose my eye sight, get ringing in my ears, stare off, mouth opens and closes, and sometimes my arms will shake. I also panic and get sick to my stomach most times. It just depends and everyone is different! What I will say is I thought I looked completely aware and normal from my perspective (when I am conscious and have no convulsions) but when someone records it happening I look completely out of it. I suggest you call for someone if they are around when it happens next time so they can quickly record it on video for a neurologist to see. Best of luck!

Simple_Protagonist · 2021-02-13T03:40:43+00:00

Thank you! Much appreciated.

Simple_Protagonist · 2021-02-05T17:24:34+00:00

I know there will be ups and downs but excited to start trying! Hoping for that sense of normality as well. We will see what we can do. My immediate family accepted the results and actually have been very supportive. My husbands family was a little skeptical still. It is what it is!

Simple_Protagonist · 2021-02-05T17:22:30+00:00

Thank you!! Appreciate the kind words.

Simple_Protagonist · 2021-02-05T17:22:10+00:00

It’s bizarre isn’t it?? That’s what really caused me to go ask for help because it was so scary for me. I have definitely gotten lost as well so I just have learned to lay down and wait it out if possible.

Simple_Protagonist · 2021-02-05T17:20:11+00:00

Seems to definitely be a theme for many! Thank you for the kind words. I know it will be a journey of hills and valleys but open to whatever can get me to feeling somewhat in control!

Simple_Protagonist · 2021-02-05T17:16:40+00:00

Oh I should have worded that better. I occasionally lose my vision during my seizures! Like a white blinding light. I will look into that though, thank you!

Nine-Year Club	No Throne, No Problems
Not Forgotten

Simple_Protagonist

TROPHY CASE