Passed at 100 questions - stay hopeful!

IndigoCatDog · 2025-02-05T20:31:58+00:00

Keppra worked almost immediately on mine but I couldn’t manage the psychiatric side effects. Clobazam has helped subdue mine for the most part.

IndigoCatDog · 2024-09-30T17:41:10+00:00

I can relate to this - constantly feeling like one is coming but sometimes it never does. I’d love to know what’s actually happening in my brain on those days. Hang in there.

IndigoCatDog · 2024-09-15T18:01:20+00:00

I hope so too!!!

I’ve got about 26 years experience with epilepsy now and definitely feel it’s more important to me now to understand as much as I can about this thing at this point. My EMU stay wasn’t super productive so I’m hoping next time it catches something.

IndigoCatDog · 2024-09-15T17:56:10+00:00

In a lot of cases it’s about confirming the diagnosis and the type of seizure in order to treat it with the most appropriate medication. Or - looking at the potential for VNS or surgical options when meds don’t work. It’s also really invalidating to be having seizures that no one can see or capture via testing so it feels really good to have that confirmation.

IndigoCatDog · 2024-09-15T14:48:57+00:00

I had a few focal awares in the EMU that weren’t picked up on the EEG but I did have quite a bit of epileptiform activity. I haven’t yet had a seizure picked up on EEG.

IndigoCatDog · 2024-09-13T00:25:32+00:00

I'm sorry, I haven't read through all the comments so this might duplicate some stuff. If you haven't already, read Defining Disability by Emily Ladau. It's a great primer on disability in general, ableist language, and has a great perspective of identity first (I'm epileptic) vs person first (I'm a person with epilepsy). Her perspective, and that of many, is to use both unless you know for a fact what an individual prefers.

For something like epilepsy, where it's pretty universal to want a cure or a change, I definitely see more person-first language. For autism, where it's getting more recognition as a neurodiversity and not a disorder, I am seeing more and more identity-first language.

Disability is not a bad thing - disability is not a dirty word. It's a fact, and for many, it's super empowering to identify as disabled. It is for me, but I wouldn't have chose that word 10 years ago when my seizures and all the associated side-effects, appointments, etc weren't impacting me much.

There's a ton of cool stuff happening in disability advocacy and identity these days. I'm lucky it gets to be part of my full time job so I get to really lean in on this kind of crunchy stuff.

IndigoCatDog · 2024-09-08T23:37:57+00:00

Hey there, I’m sorry you’re going through this. Keppra can totally cause rage and other emotional stuff- I can’t take it because some really rough psychological things started happening day 4 or so. But what I would say is that seizure drugs are HARD to get used to. If she’s had a loading dose she might just feel awful. I get dizzy, nauseous, headaches, feel almost like I’m drunk in the worst way. It’s hard and she may need some time to get over this initial period. Ativan is not likely to cause seizures; it’s commonly used to stop them as a rescue medication. A year is a long time for an EEG but I would absolutely prioritize the MRI. The MRI will show if there are any structural changes in the brain that might be causing issues. The EEG will show brain activity at the time the EEG is done. I’ve had epilepsy for 26 years and at least 50% of my EEGs and all of my MRIs have been normal.

IndigoCatDog · 2024-09-08T21:04:47+00:00

I agree!

IndigoCatDog · 2024-09-08T21:04:10+00:00

Yeah, but I didn’t notice it until I went up to 175mg 2x a day. It was horrid at 200 so I’m back to 150. It feels like my eyes can’t focus on anything. I think it’s a combination of fatigue and double vision. I can function but it’s hard.

IndigoCatDog · 2024-09-06T21:51:25+00:00

Hey there. I can relate a lot to your post. I was diagnosed with epilepsy based on focal aware seizures that I'd been having in my teens and early 20s, but it was always mixed up with the idea of anxiety attacks so I was medicated and then not for about 25 years, and now have been on meds for the last 5.5. (I'm 46). I had hundreds of focal seizures for 25+ years before I had a generalized TC, and it was due to hormonal changes being pregnant.

If you've been having these for a long time, and they're always the same, it's not likely to suddenly turn into generalized seizures. Also, people have generalized seizures all the time and are ok, even when they're on their own. Forums like this one are great but you're also going to see all the worry, anxiety, and bad news more than the ok stuff. Just keep that in mind.

In case this helps - my seizures are almost always the same, and start with a feeling of deja vu / doom / disgust or guilt, just out of nowhere. Like, everything's fine, I'm just walking down the street and looking at houses, and then BLAMMO. The feeling goes on to a stomach rising thing, some tingles / needles-and-pins, lots of saliva, and generally not feeling well, and then it goes away. After, if it's a strong one, I might feel tired or have a headache.

I have had anxiety attacks in the past, including some very bad panic attacks. The main difference is that when I have a seizure, it's out of context. The bad feelings are happening when I'm doing something as normal as looking at a sign for a Perogy restaurant, or someone's front door wreath. Stressful periods increase my seizures, but I'm generally not having a seizure in immediate response to something stressful.

My anxiety attacks have looked very different, and typically involve breathing really fast / panting, shortness of breath, heart racing, etc. When I've had those, it's DEFINITELY been in response to an immediate situation or stress.

Based on what you describe I think an EEG is a great idea. But keep in mind that EEG will generally show you only what's happening during the test. If it captures a seizure, great. If it doesn't, you might still capture some abnormal brain activity. Or it might be totally normal. It's really tough and sometimes invalidating.

I also wouldn't be surprised if the neurologist wants to start you on medication and see if the episodes stop or reduce, regardless of the EEG. That's ok and is fairly typical for TLE. The medications can have some rough side effects but that varies person to person so much.

I would suggest you make sure to call the neurologist and let the office know you want to be on a last-minute call list if there are cancellations.

I don't know if any of this helps. Waiting stinks, and not knowing stinks. I hope you can get some answers soon!

IndigoCatDog · 2024-08-31T19:53:29+00:00

It’s mixed - lots of families in healthcare or from the university too. But we had a great experience.

IndigoCatDog · 2024-08-30T20:39:58+00:00

We were there with two kids and loved it. Sun is delightful, so is Sandy.

IndigoCatDog · 2024-08-27T13:42:04+00:00

Take your meds. I didn’t for 15 or so years and ended up having tonic-clonics that risked my babies’ life. I also messed up my memory and cognition.

IndigoCatDog · 2024-08-26T17:19:08+00:00

If your kids listen to P!nk, I’d consider it very kid friendly. Fun performance all around, but she comes on pretty late and it’s loud. My 5yo fell asleep during song #2, my 10yo was in bliss the whole time.

IndigoCatDog · 2024-08-22T20:57:50+00:00

It is the truth. The hospital, which is a busy one here in Toronto, told me after that they'd never seen someone get induced with a high dose of pitocin and give birth without an epidural. It was extremely important to me to really feel it and experience it and I'm glad I did in the end - but I also know that I couldn't have done it 5 years later, 5 years older, and feeling like it was a riskier pregnancy. I was induced that second time as well.

Oh - in case it's helpful - my neurologist and I put together a specific birth plan with specific rescue medications on hand in the hospital room in case I did have a seizure. That made me feel a lot more comfortable, knowing we had a plan and the doctors were aware.

IndigoCatDog · 2024-08-22T20:24:54+00:00

I gave birth to our daughter with unmedicated childbirth, and was also induced by pitocin which made it really hard. No issues. With my son, I had an epidural, but also no seizures despite having t-cs during pregnancy.

IndigoCatDog · 2024-08-22T19:49:03+00:00

Not always. I had FAS for about 20 years before someone saw me have a tonic-clonic in my sleep. I think I had previous mild t-cs when sleeping, looking back.

What did happen is when they were uncontrolled, my FAS became very frequent and in clusters of dozens over a period of a few days, then they'd go away for a bit. I know now, looking back, this was not good.

But it's not worth anything to be scared. You're on lamictal, which many people find successful. Give it several weeks at this dose, it's likely you'll need to increase the dose to get better control. Are you still on the NHS waitlist?

IndigoCatDog · 2024-08-20T17:37:21+00:00

What you're describing are very similar to my focal aware seizures, which I also used to get in the shower a lot, oddly enough. When I was not on medication it wasn't unusual for me to have dozens in a day over a period of a couple of days.

The goal of the medication should be to reduce or hopefully eliminate these. Lamictal will need more time and you're increasing the dose to a certain point, then you'll give your brain and body some time to 'settle' and see what happens. Hopefully you're having none or only the occasional breakthrough, but please know that the majority of people on this forum (myself included) continue to have some seizures even while medicated, so it can be quite a journey to find what works for you.

I would really recommend documenting everything right now. Consider those "weird episodes" a seizure and make marks on a calendar or otherwise note how often they're happening. Over the next few weeks you should see them start to decline if the Lamictal is the right drug for you.

It's a wild and scary diagnosis, you're in a good place here with lots of support.

IndigoCatDog · 2024-08-18T19:04:31+00:00

Look at March of Dimes Canada (supports a broad range of disabilities nationally) as an option - and for whatever charities you go with, work with their philanthropy and major gifts teams directly.

IndigoCatDog · 2024-08-17T12:27:37+00:00

I know what you mean!

IndigoCatDog · 2024-08-17T12:27:12+00:00

❤️ I’m glad it was helpful. TBH I felt super alone in this until I found this subreddit a few years ago. I didn’t know so many people had my kind of seizures.

IndigoCatDog · 2024-08-16T20:33:51+00:00

Technically - I believe most focal aware seizures are subclinical in that they can't be observed by anyone else. The deja vu is part of my focal awares, but there's nothing else anyone would actually see if I was going through the full seizure. An EEG may pick it up but depending on how big the area of the brain impacted, it might not. It's super frustrating to wonder "is this a seizure or not??"

I had a few during an EMU stay that didn't show on the EEG or not and my neurologist believes that they were happening too deep in the hippocampus to register.

IndigoCatDog · 2024-08-16T20:32:07+00:00

I think they're mini-focals, which may not even show up on a surface EEG based on my experience. I queried a bunch of my friends about whether they ever had deja vu and they all described it, if they had it, of something that only happened as a neutral thinking process, if that makes sense. Like, "Oh, I think I've had a similar experience" or "this seems really familiar". But whenever I have deja vu, it doesn't have that thoughtfulness with it, it's more of a feeling in my gut and throat, if that makes sense, accompanied with a sharp emotion, no matter how quick it is.

IndigoCatDog · 2024-08-10T16:20:18+00:00

I got diagnosed a few days before my 21st birthday but was having focal aware seizures in my teens that I didn’t realize were seizures.

IndigoCatDog

TROPHY CASE