Hello! Wondering what experiences with birth control have been like for anybody?

I have hashimotos and suspect pcos as well. I am waiting for a doctors appt to discuss if birth control pills will help regulate my period like they used to.

I’ve seen some websites say that birth control can lessen the effects of my lamotrigine (200mg per day). I’d love to not have to increase my dosage.

Looking for other folks experiences! TIA 🫶🏼

I am have fever now but why having simple fever makes things double worse like not any type of medication can get because no one wants medication clashing give surprise seizure or prevent it

Like talking any medication take we need to make sure not to clash is just.....so exhausting I hope no one gets to experience this

I tried to say it's just a normal fever how bad can it be right but for some reason when I get sick it's always 3 time worse.....

After my breakthrough/ diagnosis in '09

Anytime I wake up in pain my brain immediately snaps to .. - oh hell -

Then process list goes into play:

Check pants, wet? Still wearing what I had on when I went to bed? Bruises? Is there a band aid on my finger? Is the furniture in the room disheveled? Are there various bits of packaging from EMTS fervently addressing my writhing form?

Yea to any of these I had a seizure ..

No? " oh, just old age then...."

Sad thing.. at 55 the first.list and the old age conclusion will eventually have a lot of overlap so I'm thinking ring cam pointed at my side of the bed.

If your any other reason, the hilarity of watching me mentally run the checklist

.. anyway, felt.i needed to share this .. I'm sure a few can relate.

As always, hang in there.. you're not alone.❤️

I’m 17 and I started having seizures last summer I have one a month usually sometimes more but I haven’t skipped a month since it started and my last doctors appointment with my seizure specialist was in August and my appointment still isn’t till may last month I had 2 seizures and I just had 2 today alone any advice it’s pissing me off my appointment was even march originally but they cancelled it for someone else

I’m on it for bipolar, not epilepsy at 100mg. Ive experienced nerve zaps (usually in my legs) while on this but nothing significant. I have never had a seizure before -

Earlier this week Left side of my face started tingling and mouth went numb - Couldn’t move it. Then the tingling sensation travelled to the back of my brain. All lasted about 15 seconds.

Never felt anything like it before - looked into it and it was described like an aura. A warning sign before a full seizure? - which luckily never happened to me. I know this is an anticonvulsant so I’m weary of what’s going on here.

I’m going to start weaning off. But I wanted to ask 1) does this sound like what an aura feels like? And has anyone else experienced this on Lamotrigine?

this may make me sound crazy, but i had an epilepsy study done after months of struggling with convulsive seizures and status epilepticus only for them to tell me i don’t have epilepsy anymore. on may 10th of 2024, i was diagnosed with focal epilepsy in my frontal left lobe. i went on tons of medications and struggled a lot to get through it with ups and downs, and then went for this study a couple of weeks ago desperate for answers and the right medicine. i had a convulsive seizure on the last day that i was there for no reason, and the neurologists came in to tell me that my EEG during the event was normal. they have recommended me to a CBT therapist. usually, this would be wonderful news, but it just made me feel like i’m crazy. i don’t understand how i can go from suddenly having a real epilepsy diagnosis to just not having it anymore. i feel like i’m insane and i’m so ashamed. i tore the EEG leads off of my head when i found out and began to cry. i had sores on my head for a week. the neuro tech came in and consoled me and took the rest of them off for me to be discharged, and my parents kept calling to “congratulate” me and tell me how relieved they were. i wasn’t and still am not relieved. it makes me feel worse. i’ve struggled with mental issues due to trauma my entire life, so finding out that something this serious is happening to me over the same trauma makes me feel like i’ve genuinely lost my mind. i’ve shut myself off from my parents and haven’t told anyone else the results. i’m genuinely so very ashamed of myself. i would’ve rather been told it wasn’t something i could control rather than something else i need therapy for. i know that may make me sound ungrateful and insensible, but it just made me feel like i was wasting everyone’s time and worry. i don’t know what to do and i don’t understand it. has this happened to anyone else? i feel like a fraud and like everyone sees me as an overdramatic freak. i can’t help it when it happens. i’m just so disgusted with myself. with my head. i don’t want to talk to anyone about it ever again. i don’t know how to cope or come to terms with it all.

I recently lost my job and my health insurance coverage from them. I'm so scared because I haven't been unmedicated in years and before I was medicated I was having several seizures a day.

I don't know how I'm going to afford my meds and I'm really scared of how my health is going to be impacted.

Any natural suggestions or tips if youve gone through this?

After my second hospitalization in 3 weeks, I’ve been diagnosed as having Epilepsy and PNES. As happy as I am to have the answer of what’s going on, I am terrified for my future. I’m relieved to know that my doctors will have the right information, that I can properly inform people that I’m around. But it’s terrifying at the same time. Knowing that I’m no longer allowed to take a bath, to swim without a lifeguard, or do specific jobs or activities that could result in me getting hurt or injured. This last seizure led me to a head injury. I would never wish this upon any one.

Does anyone else get synesthesia during there focal seizures? Sometimes during my focal seizures I will be able to hear and smell different senses like if a smoke alarm starts beeping I will smell popcorn. It’s incredibly weird and I only get the synesthesia during the seizures. I also have extremely vivid hallucinations during some of my focal seizures.

So having to be 6 months seizure free (am not) for my doctor to send the dmv a letter to get my license back is killing me! I got into a car accident last time (why they took it) and I doubt it even if my neuro sent the letter in I’d get it and it’s so fucking sad I wish I could have seized (no pun intended) the job opportunity I got @ att with commission (manager offered me a job after talking while fixing phone issues) but it’s out of city and I’m not spending my check money on transportation & there’s no busses around /: even if so I doubt I’d do that so I’m considering an electric bike but I can’t rely on the fucking weather smh 🤦🏻‍♂️ what have you guys done? (Work from home is out of question)

Exactly what the title says. Why is epilepsy/epileptics so scary to people? Is it because epilepsy isn’t talked about? The only seizures you see in movies are so over the top and unrealistic?Why? I’m genuinely curious.

EDIT: I get that some like tonic clonic are scary and things like SUDEP are scary, but if you only have small seizures I don’t understand why people are so afraid

So, recurrence of TC seizures after 17 years off meds in Oct 2024. Initially started on Keppra but now titrating up lamotrigine too from 1 Jan 2025 as been having a really rough ride on the Keppra.

After a thunderclap headache that required hospital assessment 2 weeks ago, I've now got shingles down my right leg which is very sore and very painful. I'm just so fed up of this rubbish. Pretty sure it's all due to chronic stress at home but unable to move house for a few months (need to see how epilepsy settles down and get driving licence back).

Signed off work for 2 weeks now as of last Friday and boss seems pi**ed off with me about it but literally nothing i can do! (And for the record, I've only missed one day at work since the seizure due to the headache).

Just ARGH! Sorry for the rant but figured you may be the one group of people who get it!

Basically, a YouTuber introduced me to the idea that seizures aren't always the convulsing kind. I had a family member who had seizures, at least temporarily, they eventually went away. As I was looking into it, I found auras like ear ringing that randomly comes and goes, trouble finding the right word verbally / mentally and even at least some of my spacing out and deja vu spells. Most of these have been going on for at least years if not as long as I can remember. Talked to primary, got referred to neuro0logist, talked to them, went through an EEG and MRI. MRI confirmed no tumors or other causes, EEG caught heighted activity in my right brain. Leveling up in Lamotrigine and my speech problems are gone or very reduced, though my ear / head tinnitus has gotten worse

Soo yeah, seems I got some kind of seizure disorder. Saw a post here about memory loss which I've experienced an increase in startring my new job as my stress increased.

Just, damn, I got other disabilities etc going on. Fucking wild I dealt with this too potentially for years if not my whole life.

That's it. Any advice for a new person is mych appreciated.

I had a left temporal lobe arteriovenous malfunction (AVM) removed via craniotomy exactly one year ago. Although removed successful, it left me with a traumatic brain injured (TBI). Last month I had a tonic clonic seizure, I literally broke my face and my teeth as a result but luckily I have no recollection of it, and I was unconscious for a couple of hors. Then I was diagnosed with Epilepsy due to the scar tissue from the brain surgery! So now I'm dealing with TBI and Epilepsy. Currently on 1000mg of Keppra twice a day. Had just gotten my license back in July, gone again for another 6mts 😭 I'm tired.

Recently started on Keppra and struggle remembering to take the meds in the morning so I miss a dose. When I do miss it I feel so weird and slow and have cognition speech issues where I think about something but say something else. Has anyone else had this issue? I don’t even know how to describe it to my neurologist and my next app is in a few months.

I am so fed up with my poor memory I can’t afford to get vitamins like magnesium. My doctor did give me a script for vitamin d once a week and iron pills in the morning daily. Ahhh I’m just complaining and I’m a big baby I know this. I know this. But after dealing with this for 20years I’m just sick and tired

I don’t know where we go from here

Hi Everyone, I know the title sounds crazy but I had a pretty unbelievable seizure story that could’ve ended in a fatal accident but, instead, everyone survived. It made me wonder if anyone else has a seizure story that had an uplifting ending, restored your faith in humanity, involved hot EMTs, etc. :) There’s so much that’s depressing about our condition and I hope this post can help you think of any silver linings.

I’m posting my story here because I’m relatively private and feel awkward telling others in person but my son is a serious hero and I want to shout it from the rooftops of my keyboard lol.

Anyways, I’m driving my 12 yo son to his gym and he’s sitting behind me. It’s a busy road and I seize about 100 yds from the entrance. As I drift into oncoming traffic he climbs to the front and drives us to safety, steering with 1 hand and pushing my leg on the break with the other (allegedly also using the turn signal?!). The 911 responder told him to drive to the nearby police station to which he replied, “Um, I can’t, I’m twelve.” 😂

I come to but don’t realize I had a seizure so I drove us the rest of the way 🤦‍♀️ He goes in, starts warming up when the ambulance shows up. Everyone wonders who it’s for, “oh it’s probably for my mom, she just had a seizure,” like it was NBD.

Anyways, thanks for reading and please respond with any positive stories you might have. Have a great day ❤️

I had 3 grand mals last Friday. I still think I’m in October of 1998. Nonstop Deja vu, like nonstop. Should I mention this to my neuro, I feel like it’d be a waste of time and money, idk what they could possibly do to bring me back to reality. It’s just so freaking bizarre.

Hi I'm writing this for answers for my husband. He's 33 yrs old no history of seizures. We don't kno his family history bc hes adopted He has mental health issues such as depression, Schizophrenia, mood disorder insomnia, anxiety, sleep apnea, high blood pressure, diabetes morbidly obese. He's on zyprexa Ativan seroquel doxepin valsartan ambie, adderall n he was on gabapentin. He has his first seizure while parked and they found him unresponsive in a ditch. They had to break the window to save him. On may 26th 2024 he almost died. He had 3 severe tonic clonic status epilepticus hypoxia agonal breathing. Paramedics came in our apartment saw him convulsing and he was snoring. They bagged him n took him out on the stretcher. Then while on the way to the hospital he had 3 tonic clonic status epilepticus seizures back to back. They have him versed 3 times. I was in the waiting room n they called me for permission to put him on life support thankfully he woke up. he was put on a ventilator for an hour. They have him keppra at the hospital. Keppra made him miserable n mean. So his neurologist put him on 200mg of lamictal. Hes forgetting everything. I can't even have a conversion with him bc he forgets every thing. The other day he went out running errands n he doesn't remember any of it. It's traumatic. every day I'm scared he's gonna die. We don't know what's causing the seizures either eeg n mri were normal. His vitamin d was very low though. He also had an infection from his tooth. Any idea wats causing these seizures. They just started out of no where. Anyone else have memory issues with seizure med?? Help plz tyia

I have had epilepsy life long. Now recently I had discovered I have need of Adding a New med to my daily pill box.

My doctor, cardiologist, has determined I have a significant blockage which needs a common heart medication.

Epilepsy medication does not like heart medication - they hate each other!

Have taken Lamotrigine for 20 years and has done a pretty good job of controlling seizures - never had to stop driving.

Eight weeks ago started having to take Lipitor - heart med. Nearly immediately my absence/focal seizures started becoming uncontrollable. It is the driving in high traffic and areas where there is need for lots of decisions about where to exit from one roadway to another.

It is the new med Lipitor causing this.

I need both, both critical to my health. One heck of a Catch-22!!

I have appointments with both my doctors next week. For the first time I am afraid I will also lose my driving privileges/abilities.

Do others have these kinds of conflicting medical needs?

I want to start another support group! Via zoom. Just need input and ideas of what peeps want. There aren’t enough groups out there (IMO) for support and I’d like to be able to actually see/talk! Please DM me if you’re interested in chatting about what you would like to see in another support group . Im in the PNW btw.

Hello! I am a huge believer of attitude and of being aligned with oneself. I follow Abraham Hicks, who speaks a lot about manifestation, and universal laws that govern our time space reality.

I wanted to pose this question (with compassion obviously).

What and how do you feel about this quote: “Life is 10% what happens to you, and 90% how you react to it.”

Hard quote sometimes to swallow in the trenches of epilepsy, but I wanted to ask you all, does your attitude, thoughts and beliefs help you with the struggle of this disease? If so, how do you personally try and keep the “attitude is everything” approach to living with epilepsy?

Hello, I’m new to epilepsy. Can anyone recommend some type of seizure alert system for nighttime.

The Apple Watch? Something for the bed?

I am worried about my child (6) having a seizure at night and no one realizing.

They are triggered my fevers so I will probably have some advance warning with some early fever symptoms.

I had her sleep with me last night. She had a fever off 99 and treated with Tylenol every 4 hours in the night. But I’m unsure about other nights. She’s on Keppra.

Thanks

Feb 17th will be my second EMU. New family, new state, and new doctors. My dad passed 2023 so i moved from az to Oregon to live with my brother's family. Last time I had atleast my dad visit. This time my brother is dropping me off and picking me up. How do I deal with going from an epilepsy network of multiple people who knew when I was seizing to my brother saying my wife says you're going to live up here? It didn't really sink in til I was sitting next to him and had a focal seizure and he assumed I stopped talking about the game in the middle of a conversation woth him. Now he's not visiting the 3 to 5 days im there and even though he's not working rt now. Sounds like he'd learn some if he asked questions there instead of avoiding it. Sorry I'm rambling my thoughts won't centralize to keep it simple. Oh and does emu let you ask to speed up anything? Like check me in, hook me up, and cut my meds out now? They saw the seizures last time and couldnt centralize the exact spot just the general location. Thanks for any help i can get on some or all of it.

Hi there everyone!! I’ve had seizures since I was 12 but got them under control w topamax n depakote in my early 20s for 20 years!! Last year I started feeling awful and having all kinds of health problems getting sick, heart palpitations and really bad insomnia. It turned out the topamax was causing metabolic acidosis and making me sick so my dr switched me to kepra I felt better right away but had a seizure when switching off meds last year and just had another seizure last weekend. I was taking my meds regularly but it just happened and the er dr reported me n took my license away for 6 months. My dr upped my kepra at night to 1000 mg n left it at 750 in the am. So I’m just wondering if anyone has a small dog that they trained to become their seizure alert dog?? I have been looking at maybe a Boston terrier I would prefer a small dog and I could train him myself?? Has anyone done that?? Thanks 😊

I used to be a huge fan of LSD and tripped on it multiple times before getting diagnosed with epilepsy in 2019.

I haven’t done any since the diagnosis, but I’ve been noticing that every time I have a big seizure it feels comparable to that post acid trip clarity when I recover shortly afterwards.

Not really sure how to explain in more detail… haha

Does anyone here have similar sensations post-ictal? Just curious to know how other people feel :)

Please someone help!

I have had 2 Grand Mal seizures in 4 years. I have been put on Keppra 750 twice daily and I HATE IT! It makes me tired and angry/agitated and nauseated. Can I cut my tablets in half and take 375mg every 4 hours or do I have to just learn to be someone I hate‽ I have kids and a job. I dont have time for this!

I tried lamictal and it was fine, but I ended up having too many side effects on it. Now I'm on lacosamide (Vimpat) and I'm having more side effects, but I'm hoping it will be worth it to keep taking it.

Has this med worked to completely help you with your seizures? How did you manage the side effects at first?

❗️Do not treat this as fact, this is just my personal experience please refer to your doctor about medication and treatment. Epilepsy is very dangerous disability and should be taken lightly❗️

I have been using lamotragine for about a year now or close to a year. 150mg daily (75mg +75mg) The conclusions that I have become to is that lamotragine makes you quite cold and trough that it has affected my relationship. I used to use valporic acid but that made me have absolutely horrible night terrors ect. According to my gf, before lamictal I could relate and feel emphathetic about people around my and now she says that I am just a shell. I function fine in daily life but has anyone in this support group had similar things? I am aware that lamotragine is a moodstabilizer as well to treat bipolar disorder. Brobably works well for that but someone who is "normal"/ "free of that" its gonna make just numb.

Also I have noticed that I cant sleep without taking the medication. So I assume that mayby lamotragine has some sort of addiction effect.

I apologize for my english misspelling.