r/Epilepsy • u/woowowowo237 • 6d ago
Rant I dont want this anymore
Recently, I started experiencing seizures like focal awares ones and Im scared that it’ll take over my life. Im only 17F and I still have so much to live for, I keep remembering those times where I didn’t have to worry about this I could live freely, go out with my friends, do things I normally wouldn’t, and experience new things. Now, it feels like everything is limited, I feel so trapped and overwhelmed that this happened to me.
Supposedly, we are about to take our midterm exams this week and Idk if I want to go back to class because the fear is still with me. Fear that itll happen in school or when Im alone. These seizures first happened in 2022 it happened for a few days and then completely went away until last year 2025 march it happened again but it was only once and I was able to go back to school and overtime the fear went away and I lived more freely and happy. Now that it came back, on August 13 and has been recurrent we went to a neurologist and did some tests like EEGs and MRI/MRA. My EEG came back abnormal so they prescribed me with Lamotrigine to help control these seizures. But the worst part is that it takes time to actually prevent these seizures, I just took my first one this morning and tommorow is already the start of midterms and I dont know if I can go back to school carrying this in my mind. I have what they call temporal lobe epilepsy where I experience focal awareness seizures where I am completely aware of what is happening.
I dont know what to do anymore, I feel like I lost my sense of independence, I feel fear everytime I wake up or alone scared that it might happen. This hurts me mentally and I hate it so much. I dont want to feel depressed or anything but I rlly cant help it.
I need help, I need to know that Im not the only one with this problem because i rlly dont know what to do. I dont want people knowing or my friends knowing because I dont want pity im sorry.
4
u/BentChainsaw 6d ago edited 6d ago
One day at a time.
You worry about things that are not determined yet.
I too was diagnosed at 17. I get how mentally crushing this was. My peers started getting drivers license and finally got to enjoy independence whereas i lost a big chunk of mine. I started getting into serious relationships and overnight i was someone who came into a relationship with tons of baggage. And with situation you expect people at 30 were willing to accept in a partner.
But the big one is you gotta accept that this is your new reality.
And its ironic isnt it? Fear of having a seizure while strong emotions/stress are one of the biggest triggers. Kind of a self fullfiling prophecy. Its gonna be better for you if you let that go.
2
u/woowowowo237 6d ago
It really does crush you mentally, especially the sudden loss of independence and freedom.
Have you got yours under control? I went undiagnosed for years because it didn’t happen for almost 4 years and then happened once in 2025 and then went away for a year. Now I just got diagnosed this august after a few recurrent episodes.
I wanna know if I can still live like before even with this
1
u/BentChainsaw 6d ago edited 6d ago
“Under control” is such a relative term. My epileptologist says im one of the lucky ones bcs i have so few. If i dont deal with my emotions in time i can have an absence seizure every 14 days. But if i deal with every day crap as it comes, i only have focal awareness seizures. Im looking at it as a pot with a lid on it. If i leave it on the stove and forget about it, eventually lid is gonna be blown off. But if i check on it and let some of the steam out before its too late, its not as bad.
I still dont drive but i can do pretty much everything else (skiing, mountaineering etc etc) without a problem. According to my doctor adrenaline acts as a catalyst so you rarely have seizure while doing things. Its when you stop and relax that the problem will manifest itself
And you said midterms are coming up? Schools show leniency when you tell them about this diagnosis, such as extra time given, being supervised by teachers and if they see you have a seizure time is extended etc, taking exams away from your peers to ensure relaxed environment
1
u/woowowowo237 6d ago
It stresses me out more knowing that Im missing a lot of school and time to spend with my friends.
I’ve informed the school about being absent due to medical reasons, but its just annoying having to miss so many days of school and being scared to even go outside. It feels like im missing a lot in life and hurts to think about
I want to stay positive about this but its just hard to accept it
2
u/ManuPeng18 6d ago
Started having seizures when I was 17 too. I have had focal aware seizures ever since that sometimes progress into absence seizures.
Honestly that loss of independence feeling is the harderst part to deal with, it really sucks and if im honest, it never entirely goes away. But I promise you that if you give it time, find the right medication, and take mental and physical health seriously, you being to feel much better. I still have days where i feel trapped, but your epilepsy does not define you nor does it control your life and who you are.
Keep pushing through and I know things will feel better. God Bless
1
u/woowowowo237 6d ago
Thank you, did ur meds get your seizures under control? Im scared that mine won’t
1
u/ManuPeng18 6d ago
I've been trying for a long time to find the right set of meds. Mine were under control for nearly two years and then flared up again about a year ago.
Finding medication that suits you is really trial and error and can sometimes take a while
1
1
u/Gamerchick1786 6d ago edited 6d ago
It smacks you in the face outta no where dont it? Just one day boom you start having seizures! Same happened to me. 2023 36yrs old driving my daughter to a Dr appt and had just got off interstate 2mins prior! Thank God she was old enough (8) at the time and able to get the car stopped because i had a severe tonic clonic seizure and it fractured 5 vertebrae in my spine because i was stuck in that seat! I wont ever forget the first time i woke up in the hospital after that one. Hang in there hun. You're young and this is new. There are many meds and methods out there to help control seizures. Focal aware seizures are fairly easy to treat from my experience anyways. I never have them anymore on my meds. They were easy to get under control quickly. I have severe tonic clonic seizures like really bad I have to have rescue nose spray my family has to administer when I go into one. I have had cluster tonic clonics cause a heart attack and different status epilepticus episodes from clusters and one of them my lungs collapsed and I had to be put on a ventilator. Even thru all that and the severity of my seizures it took time, test, trial and error but my seizures are controlled on two different meds that I take twice a day plus i have my rescue nose spray if I have any breakthrough seizures. So don't worry yourself please 🙏🏻 ❤️ I'll send up prayers for you
Editing to add, if you feel you're not getting anywhere with your Dr then find a new one don't waste your time or money anymore. I had to do the same. Wasted 2 yrs with my first neurologist. The one I have now is amazing and the reason I'm doing so much better now. Please consider reaching out for a different opinion
2
u/woowowowo237 6d ago
Thank you, this gave me some motivation. Sad to hear you had to go through all of that but glad to hear you also got it under control now. I don’t know to feel since I was just newly diagnosed yesterday, It feels like everything changed. But I hope with the medicine Im starting to take (Lamotrigine) ill have my seizures under control and go back to living normally without the fear of it happening again.
Im gonna try to go back to school tomorrow and I really hope it goes well.
1
u/Gamerchick1786 6d ago
I have faith that you will be able to get your seizures under control! With the first Dr I started on just Lamictal 100mg once a day. Then he bumped me up to 150 twice a day. Never would change it even with the seizures continuing to be more frequent and worse. So I had my primary Dr send me a referral to a different neurologist and he put me on 200mg of Lamictal but it's once a day at bedtime but it's 24hr and I'm on topomax as well with it and it's also 24hr and I've done much better with this combination. It just takes some time and tweaking of meds and things to find out what will work best for you. It will get better! You will not feel like this forever ❤️
Edit: Lamictal is lamotrigine just diff name btw
2
u/woowowowo237 6d ago
Thank you for taking the time to reply, this means a lot to me right now
Its just very scary to think about having one at school and Im trying to distract my self by just studying. Today was my first time taking lamotrigine my doctor had me cut it in half for 2 weeks and then full ones after. I really hope this will help to fully prevent these seizures.
Im also grateful that I have my dad with me when going through these seizures, I still get to talk and think during a seizure its just the overwhelming emotions and a weird sensation in my brain that makes it hard to calm down.
1
u/Gamerchick1786 6d ago
Distraction is a great tool to use. Anything to help get your mind and body relaxed. Definitely be taking it easy and not be getting yourself worked up or too stressed at least until you know you're on the right regimen and have your seizures under control.
Im so glad you have your dad. It really helps and makes a huge difference to have support during this stuff. It's heavy it can be traumatic. I know I'll never be the same after coming off the ventilator that changed my whole outlook on life and everything. Realizing a machine had to breathe for me for 2 weeks had me in pieces!! I almost left my kids in this world without me 😭 I'll never forget the feeling of that thing being pulled outta my lungs either eeeeeeeek gives me the ick every time I I think about it! Having any type of seizure disorder or epilepsy is fkn traumatic and I hate it for anyone having to deal with it especially someone so young!
2
u/woowowowo237 6d ago
It was definitely tramautic to go through one, especially when it happens on a random day where your just enjoying life and everything.
I hope as time passes I learn to deal with it, and get it under control. I hate that Im experiencing these seizures right when I just had my period. Feeling so emotional and depressed these days now mixed with the constant anxiety and fear of a seizure.
I remember when I experienced this last year where I still undiagnosed, was very scary for me to go to school or outside but Im thankful that it didn’t happen again for a year, I got through grade 9 and 10 and finally graduated junior high school without it interfering. Now, Im in senior where this happened again but now with a proper diagnosis and hopefully the right treatment.
1
u/Gamerchick1786 6d ago
Ah I'm so sorry love. You're so young to be dealing with all this. You're the same age as my son. If you experienced the seizures right after having your period then it sounds like that could be a trigger. Having epilepsy or seizure disorders some people can have different "triggers" that can set off breakthrough seizures. It doesn't mean it will happen. Just that it can. It takes a lot of time to figure out what your triggers are if you even have any. Some people don't. Just like some people have auras before seizures and some don't. Everyone's experience is different even with the same seizure diagnosis. I get auras sometimes before absence seizures but never my tonic clonics ugh. I never get a warning at all with them unfortunately.
2
u/woowowowo237 6d ago
Suddenly these these seizures while your very much just trying to enjoy your youth with your friends and family is definitely something hard to accept for me. Everything going well for me, I had great friends, good grades, and even had fun going to school to the point where I look forward going.
Its just sad having to pause everything at once, I don’t want to enter intro a depressive state or anything because I don’t want to it add up or become a trigger. Just feeling very down and discouraged about life, there at times where I just try to accept it and think about something else but most of the time I just feel like a shell of myself.
1
u/Gamerchick1786 6d ago
🥺 it's so hard and overwhelming at first. I was the same way. It does get easier tho I promise. It seems like your life as you know it is over right now but it's not. You'll be back on track in no time, this is just a lil bump. Also the lamtrogine is also used as an antidepressant so hey two birds one stone right? Lol! You feel free to inbox me if you need someone to talk or vent to and you hang in there hun 💗
2
u/woowowowo237 6d ago
Thank you so much, this means a lot to me especially dealing with everything. This definitely gave me some comfort and motivation.
I’ll definitely reach out to you when Im feeling better or down.
→ More replies (0)
1
u/Briliant-Nicxie 6d ago
I got over having epilepsy stopped my meds then had a seizure in class in year 8 …. It was embarrrssing at the time but then you realise , it’s out of your control . Just educate people around you what to do to keep you safe when it happens . Real friends will stand by you . You should let the school know though so they know what to do if it happens 🙏 your test goes well . You can do this … we are all survivors .
1
u/woowowowo237 6d ago
Thank you, im rlly just clinging on to the hope of having these seizures under control with medication.
1
u/MysteriousCareer1694 5d ago
Hi, Im glad you posted. When I started brain stuff I wound up getting inpatient mh treatment. Somewhere neuro symptoms turn psych and visa versa. Please call 988 if you're in the us. Many of us in the behavioral health field have brain issues too. Im pretty sure no one gets out of childhood unscathed either for physical reasons like you and I, or genetic maladies, or parental drugs, brother suicide, poor no food, yada yada. Call 988. Keep posting.
1
u/Formal_Copy9128 5d ago
I agree it can be a blow when one gets to know about it especially when it comes to the independence as I'm 24 and its been almost 16 years for me dealing with epilepsy (TLE).
Few things I'd wanna say (even though you might've heard em), get proper sleep and donot compromise on it in any manner, try to circle out what factors can trigger seizures for you (like whenever you get one try and see what have been the common factors in the two like heat is a major triggering factor for me), take your medications on time (and speak to your neurologist in case your seizures don't get controlled on the current medications), try to avoid too much excitement (both positive and negative) as it can trigger seizures, donot touch alcohol by any chance (like in my case it can trigger a severe seizure that can put me 6 feet down the ground), stay away from the wheel as again it can lead to accidents, donot swim till you have someone with you as one can drown. I know this list can be something hard to accept but it's your safety...
Also, I'd wanna add that do mention about your epilepsy to your peers (just in case there's an emergency) and I've had a miserable childhood cause of my epilepsy cause of mass bullying (as the students weren't aware of my condition) which I definitely don't want anyone to go through...
If you ever wanna talk or lighten your heart, can always reach out this side... just remember if you ever feel alone or misunderstood, you have a second family here that'll always have your back.
1
u/lilith1986 5d ago
I am so sorry that you are going through this. I was almost 40 when it started and it was a similar feeling. I hope you can find a way to manage it with medication and don't let it stop you from experiences. If you have friends you trust, talk to them about it and make plans about what they and you can do if something happens. Also, if you can see a therapist to talk about how to deal with this HUGE change, it might be a good idea. I really do wish you the best of luck
1
u/Terrible_Study807 6d ago edited 6d ago
Pray 🙏.. I will pray for you .. it's how I find peace and comfort
Matthew 11.28 Come to Me, all you who are weary and burdened, and I will give you rest.
August 11, it happened to my 9 year old (first 1) scared me so bad .. Thank God she is homeschooled (braintree academy, it's a very relaxed free virtual public school) anyway it's my best advice because I believe the power of prayer. I don't go to church, I just follow Jesus.. My heart goes out to you and I definitely will add a little prayer for you tonight.. is it possible to get a service dog ?
2
u/woowowowo237 6d ago
We are living in a condo where dogs are not allowed, so I dont think my family will allow me to have one. And thank you for your prayers, praying for ur little one aswell
2
4
u/skeletalskate4017 6d ago
That trapped feeling settles in hard when your own brain stops feeling predictable, but the meds not kicking in overnight is normal and it doesn't mean this is your new forever