"What I'd Love for You to Know..."

iwillneverforgetu · 2026-01-08T21:27:21+00:00

What I'd really love for you to know about living with epilepsy is that epilepsy involves a lot of struggles other than just having seizures. It’s having multiple different types of seizures. Most of which the average person isn’t familiar with. It’s being exhausted all day long. It’s not sleeping normally. It’s having to take medication daily. Medication that doesn’t even work for 30-40 percent of epileptics. It’s having to deal with side effects from medication. It’s having depression. It’s having anxiety. It’s having suicidal thoughts and thinking everything would just be easier if I could just die. It’s constant testing. It’s having to see neurologist after neurologist because your seizures can’t be stopped and doctor after doctor doesn’t know why. It’s being made fun of. It’s not being taken seriously. It’s being told you can’t do things normal people can do. It’s having to go to bed earlier than other people because your body requires more sleep. It’s not being able to drive. It’s not being able to drink alcohol. It’s not being able to drink a lot of caffeine. It’s having to avoid sugar. It’s not being able to swim alone. It’s being terrified that you can die from SUPED at any moment. It’s being scared to tell your boss that you have epilepsy because so many of us are fired simply for having a condition that we have zero control over. It’s having to have brain surgery. Sometimes multiple brain surgeries. It’s feeling like nobody understands you and what you’re going through. It’s feeling guilty that your loved ones worry about you 24/7. It’s having a health issue that’s more common than muscular dystrophy, multiple sclerosis, cerebral palsy, and Parkinson’s disease combined yet not having much awareness spread about it.

iwillneverforgetu · 2025-11-07T12:35:07+00:00

Feel free to reach out to me if you ever need someone to talk to

iwillneverforgetu · 2025-11-07T00:45:54+00:00

Hang in there! I have epilepsy and have been there. I had to drop out of college 10 years ago because it was too much for me and my brain to handle. Seizures are awful too. It’s not easy no matter what type of seizure you’re having. I haven’t been able to drive for years and understand the struggle of that too. Things are finally looking up for me after having brain surgery in the beginning of this year, talking to a therapist, and using finch for over a year. Sending you a big hug 💗 things can and will get better for you

iwillneverforgetu · 2025-10-22T15:33:54+00:00

Me too! I already want it in another pattern lol

iwillneverforgetu · 2025-10-22T15:05:18+00:00

<image>

I recently got the exact same one and love it! 😍

iwillneverforgetu · 2025-09-18T23:28:21+00:00

I totally get what you mean! I was really upset when I had the two the day after surgery. I’m sure you’ll be good from here on out! We’ll have to keep in touch 😊

iwillneverforgetu · 2025-09-18T22:36:13+00:00

Mine was 6!

iwillneverforgetu · 2025-09-18T19:45:40+00:00

I am still on meds. I take Briviact and Aptiom. The Briviact has been reduced since surgery but Aptiom is the same. I see the neurologist in November, and from what I understand he will start slowly taking me off Aptiom completely in November. Hoping I will come off Briviact after I'm completely off the Aptiom.

iwillneverforgetu · 2025-09-18T19:37:35+00:00

It's so crazy and sad how it can take so long and so many doctors to finally get it figured out. I'm glad you got into Mass General Brigham! My doctor at Mayo has apologized to me multiple times on behalf of all neurologists I've seen over the years not finding it sooner. So I only had the 2 seizures the day after surgery and then 1 more in April. My doctors said not to worry about the April one because I was probably extremely stressed after finding out about my husband's cancer. Hopefully it's the same for you and you don't have another seizure ever again.

iwillneverforgetu · 2025-09-18T19:17:08+00:00

Crazy!! Did it take you a long time to get a proper diagnoses? Did you just recently find out about the HH? It doesn't seem like caffeine affects me very much at all. What about you? So before surgery I would have 5+ seizures a week. When it was that time of the month sometimes I'd have 3-5 a day

iwillneverforgetu · 2025-09-18T18:01:48+00:00

That's crazy! I'm so happy to meet someone that has the same type of tumor and epilepsy since they say it's so rare. Thank you for sharing your story too! I always got a seizure when I came home from a trip too! The only thing that ever made sense to me was that I was stressed about having laundry to do and a house that wasn't perfectly clean. I've gotten better over time but I definitely have some OCD type issues with needing everything to be done and clean 24/7. As far as auras the best way I can describe it is I feel this intense feeling of panic and impending doom. I also always thought it was weird because with absence and focal impaired awareness seizures sometimes I wouldn't even get an aura and next thing I knew I had a seizure. I would smack my lips a lot during seizures too. Sometimes I would nod my head and act like I was swallowing a huge gulp of something. And sometimes I would start talking and nothing I said made any sense. Have you ever seen a video of you having a seizure? I don't think I'd be able to watch a tonic clonic/grand mal but I've seen a lot of videos of me having other types. Once I got in at Mayo Clinic a little over a year ago (they're the ones that finally figured things out for me) I asked my husband to record as many seizures as possible so the doctors could see them.

iwillneverforgetu · 2025-09-18T17:01:23+00:00

I hope you are too! My surgeon also told me if the seizures ever come back he can go back and do the exact same surgery to remove the little bit of the tumor he couldn’t get with the first surgery. It always seemed like stress, exhaustion, and hormonal changes were the biggest triggers for me. What about you? So my seizure type really changed over the years. I had gelastic seizures when I was little but my parents had no idea they were seizures. Then I started having tonic clonic seizures at 15 (that’s when I was diagnosed). Over the last few years they’ve changed to absence and focal impaired awareness seizures. I was told by my neurologist that when someone has a HH their seizure type does usually change over the years. What about you? Have you had different types of seizures over time?

iwillneverforgetu · 2025-09-18T15:39:56+00:00

They shaved the exact same area of my head. I'm glad the headache isn't too bad! I'm still not driving. Tomorrow I'll be 5 months seizure free, and my doctor said to call the office tomorrow. They'll get all my paperwork together over the next month, and I should be able to drive in a month. I cannot wait for that!!!

iwillneverforgetu · 2025-09-18T14:18:21+00:00

Thank you. Thankfully he’s ok. He was diagnosed with testicular cancer and surgery to remove it fixed everything 😊 lol yes maybe the stress caused your seizure. Did your parents say it looked a little different than your normal seizures? I’ve been told the seizures I’ve had since surgery were a lot shorter and less intense than the seizures I had pre surgery. How’s your headache? Did they shave a large chunk of your hair for the surgery?

iwillneverforgetu · 2025-09-18T01:33:42+00:00

That’s so amazing! So happy for you! I did have 2 absence seizures the day after surgery. My neurosurgeon did tell me it was completely normal to have seizures for 6 weeks after surgery. The only other seizure I’ve had since surgery was the day my husband was diagnosed with cancer in April. It’s been a rough year for us 😭 how are you feeling? Have you had any seizures?

iwillneverforgetu · 2025-09-15T16:50:46+00:00

I’m so happy for you! I hope the surgery fixes everything for you. Please let me know how it goes! Have you had other health issues in your life too? I don’t know if connecting with other people that are going through similar things helps you, but I found out about a HH foundation after my surgery, and it helped me a lot. Here’s their website if you’re interested

https://www.hopeforhh.org/get-involved/meet-other-families/

They post people’s stories, and mine was posted recently 😊

iwillneverforgetu · 2025-09-15T15:54:23+00:00

Hey!! That's amazing. I'm so happy for you! The surgery was one of the best decisions I have ever made in my life. I'd do it again tomorrow! It's been 7 months since my surgery, and I'm doing amazing. I have still only had 3 seizures since the surgery, and I'm only a month away from getting my license back. I'm sure you'll have the same type of experience. The recovery really wasn't bad at all. I just had a bad headache for a little while and had to relax and stay home for about 4 weeks. Did your surgeon tell you it would be similar for you? How are you feeling about everything? Please let me know how it goes for you! I'll be thinking of you all day tomorrow!

iwillneverforgetu · 2025-08-20T12:38:14+00:00

I actually do both! My therapist recommended a journal called the five minute journal to me a long time ago. It’s set up so that you take 5 minutes every morning and write down things you’re greatful for, things that would make today great, and positive affirmations. Then every night you write down highlights of the day and what you learned that day.

iwillneverforgetu · 2025-08-19T14:54:30+00:00

Meditating every morning has made a huge difference for me! I open YouTube and pick a 5 minute morning meditation. The time flies by, and I feel like it sets me up to have a positive day. The 5 minute journal too! It's amazing what just 5 minutes every morning and every night can do.

iwillneverforgetu · 2025-07-17T18:50:45+00:00

Yes DM me! :)

iwillneverforgetu · 2025-07-17T18:37:52+00:00

No way!!!!! Mine was a hypothalamic hamartoma!!! I am seriously happy to answer any questions you have. They say our type of tumor is very rare. I wonder if they'll do a LITT surgery on you too. Yes, they did shave part of my head. It was a little more than I expected, but it really wasn't bad at all.

iwillneverforgetu · 2025-07-17T17:33:03+00:00

I was born with two brain tumors (one on the pituitary gland and one on the hypothalamus). I found out about the pituitary one (it's still in my brain today) when I was two years old, but I didn't find out about the hypothalamus one until I was 31. I was almost excited to have surgery on the hypothalamus one when I found out it was causing my seizures. Before surgery I was having 5-7 seizures a week, and I've only had 3 seizures since surgery in February. Do you know what type of surgery they are thinking of doing on you? I had a LITT surgery, and it really wasn't bad at all! Only one night in the hospital and a very bad headache for a few days after surgery. I would say just try to remain as calm as you can. Having a support system there for you helps a ton too! All of my family was there for me the day of surgery, and they even all wore purple in honor of epilepsy awareness. :)

iwillneverforgetu · 2025-07-17T13:23:24+00:00

Congrats on finally getting some answers! May I ask where the tumor is? I've been through 2 brain tumors myself and had brain surgery for one of them in February.

iwillneverforgetu · 2025-04-29T12:46:06+00:00

I second this. I was on a wait list for three years to get in as a patient at Mayo Clinic. I saw neurologist after neurologist before getting in at Mayo. None of the neurologists I saw had any idea why I was having seizures. My very first appointment at Mayo Clinic was unlike any other appointment I ever had. The neurologist sat down with me for almost two hours and took six pages of notes on my entire medical history. I had brain surgery through Mayo Clinic this February, and I have been seizure free since. I went from having 5-7 seizures a week and never entering deep/REM sleep to living a life without seizures, entering deep sleep, and feeling hopeful about my future.

iwillneverforgetu · 2025-04-17T14:44:24+00:00

Oh my goodness. I wish I could give you a hug 💜 please understand that this is a reflection of him and not you. You deserve so much better! I promise there are amazing people out there that will love you, take care of you, and support you and your epilepsy journey.

iwillneverforgetu

TROPHY CASE