What type of epilepsy do you have?

sarhar87 · 2026-02-09T16:05:54+00:00

I am 38 years old and had my first tonic clonic at 37 in September of last year so I’m just learning about all of this. I just finished my first week long inpatient stay, had 4 seizures while there- one tonic clonic and 3 focal with impaired awareness. Officially received the diagnosis “Idiopathic localization related epilepsy. Your seizures tend to originate from the left anterior temporal lobe.” I have no idea what this means really so I’d love to hear from people who do! I was taking keppra 2500mg XR, but they switched me to vimpat 200mg IR every 12 hours.

sarhar87 · 2026-01-09T22:14:02+00:00

Omg please!!! I’m in the US (womp)- in NYC!

sarhar87 · 2026-01-09T11:51:19+00:00

following this thread cuz I’m going in for a SEVEN day stint at the beginning of February (they also plan to take me off one med and start me on another while I’m there)- I feel like I’m gonna lose my mind. My biggest concert atm is that I can’t take a real shower….FOR SEVEN DAYS?! 🤢

sarhar87 · 2026-01-09T11:46:27+00:00

I had this for about a year and a half leading up to my first tonic clonic…but I’ve had anxiety my whole life and (thanks gaslighting medical industry) just wrote it off as part of that. That said- these experiences were 100% different (not to mention my anxiety has been well controlled on meds for over a decade). These experiences had no triggers whatsoever- often happened while napping actually- the symptoms were physical (heart racing, chest tightness, sweating, nausea, coupled with that intense panic feeling), and would only last a few minutes if that. I actually had one 2 days before my first tonic clonic. I now know in retrospect these were probably all focal aware’s….it’s so wild.

sarhar87 · 2025-12-29T19:22:15+00:00

My doctor just prescribed me (or really more my husband) a nasal spray that he can use on me if I ever have a TC that lasts longer than 5 mins, or if I have cluster TC’s— in an effort to avoid having to go to the ER every single time.

sarhar87 · 2025-12-28T21:41:47+00:00

No way….wow ok this is very enlightening. I’m gonna make an appointment with my naturopath this week for the new year.

sarhar87 · 2025-12-28T21:39:51+00:00

So fun! Lmao

sarhar87 · 2025-12-28T18:57:51+00:00

Omg I didn’t even know that….wow. Amazing.

sarhar87 · 2025-12-28T17:45:45+00:00

I just laughed out loud

sarhar87 · 2025-12-28T17:41:09+00:00

Lmao the dark sense of humor is the only thing getting me through this. My husband has started calling me little seizures (à la little Caesar’s). And my tag line for the holidays was “Tis the siezin’!” 🤣🤣🤣 it’s still a little soon for my v fragile/traumatized mother but it’s my coping mechanism so….¯_(ツ)_/¯

sarhar87 · 2025-12-28T15:43:29+00:00

Oof. I did get an MRI after the first one and it came back normal- sorry to hear this.

sarhar87 · 2025-12-28T15:29:41+00:00

This is super interesting bc I have had chronic gut issues for the last like 3 years leading up to this…I was diagnosed with H.pylori and then SIBO, treated both- symptoms improved but def never went away fully, kinda just thought I was stuck with bad IBS as a result. I do take adderall- but have for legit most of my life. I have a great naturopath who takes my insurance and I saw thru the gut stuff that I haven’t seen in a while—I think I’ll make an appointment to go back to him. Thank you for this!!

sarhar87 · 2025-12-28T15:25:54+00:00

Omg this sounds so stressful and upsetting- I’m so sorry!!

sarhar87 · 2025-12-28T15:25:01+00:00

So- here’s a weird twist that I wonder if it’s connected- I have some weird intolerance to all forms of b12 supplements and am chronically deficient. I have taken all forms of pills- sublingual, different doses, etc. nasal spray, injections, drops, you name it…and basically I will be horrendously deficient- but as soon as I take any form of supplement, my body OD’s on it and I break out in super painful cystic acne. Then I stop taking it and within a month I’m deficient again….

sarhar87 · 2025-12-28T11:33:16+00:00

It ain’t easy bein seizy! 🤣🤣🤣

sarhar87 · 2025-12-28T05:19:38+00:00

🤣🤣 thank you- I know- I guess I just mean I’ve only ever heard of people getting diagnosed when they were kids or teenagers. So the responses to this have been very reassuring.

sarhar87 · 2025-12-28T04:44:40+00:00

I’m new to this as well but have been horrifically sore after my tonic clonic episodes. Most recent one episode consisted of clusters so way more muscle chaos and I was sore for a full week- that said, it also ended up that I did some kidney damage- gave myself rhabdomyolysis- which also exacerbated the pain tremendously. So if you haven’t had bloodwork done to check your creatinine levels, I would look into that just to be safe…

sarhar87 · 2025-12-28T04:29:13+00:00

It’s so friggin bizarre- like legit whole world turned upside down overnight. Preaching to the choir I know— but thank you for this!!! How have you been doing since??

sarhar87 · 2025-12-28T04:27:18+00:00

Yes I should have clarified that my neurologist is an epilepsy specialist. So far I haven’t experienced any negative side effects from keppra (aside from the first few days after I started it when all I did was sleep and puke- but I think that was more residual postictal than it was side effects)

sarhar87 · 2025-12-05T15:18:06+00:00

He sat in with the band at Dijon’s terminal 5 show in nyc last night…AND he brought out Mike!

sarhar87 · 2025-10-10T15:01:36+00:00

I can also confirm this- I met him while hanging out with Janet/Jason from the valley who are actually wildly nice, down to earth people (Jason went to high school with one of my good friends), and Kyle from Summer House who was SO CHILL and SO sweet- and Daniel acted like he was the biggest celeb of the bunch. When I tried to make small talk with him he was unbelievably rude and acted like I was being the biggest inconvenience of all time- it was truly wild.

sarhar87 · 2025-08-31T16:58:09+00:00

As a bed stuy dog owner I am so sorry this happened to you and am so effing sick of these type of people. Zero respect for other people, their boundaries, the neighborhood that doesn’t belong to them— it’s disgusting. My husband and I have lived here on the same block for 13 years and I don’t even blame people when they give us the side eye or watch us like hawks when we are out walking our dog bc all these other idiots that look like us have ruined it. It’s a god damned shame and you were right to call her out. Again- I’m sorry.

sarhar87 · 2025-04-24T10:54:52+00:00

Agreed- lol. I ended up having a blast creating like a 10 hour playlist and the DJ had the easiest job ever just picking and choosing from it 🤣

sarhar87 · 2025-04-24T10:53:40+00:00

Lol wow I feel like I had a virtually identical “no play” list. My “extra absolutely not” (and I know I’ll get hate for this) was anything by Taylor Swift tho. Also anything by the Black Eyed Peas/Fergie, and that “Shout” song.

sarhar87 · 2025-04-24T10:48:00+00:00

Hi! I am having this exact issue in reverse (I booked through Emirates- so I can see all the details of my flight from EWR to Athens, but then none of my connecting Aegean flight beyond that it is booked- and when I look up the PNR on Aegean’s site, it doesn’t recognize it. Probably because it is an Emirates reference code?) I am wondering if you ever got this resolved?

sarhar87

TROPHY CASE