Changing/Getting worse without treatment?

[DancesWithPugs1980]

I've been upfront with this in many other posts so far that I don't have a proper diagnosis, but am 99.9% sure that the brain weirdness I've experienced for 17 years may be partial seizures.

That said, if that's what these are, is it common for them to change or get worse over the years if they're not being controlled well? Or at all for that matter. Even being on lamotrigine for something else (400 mg, so not exactly a small dose), I still get them.

The reason I ask is, there have been minor changes lately; but all those changes add up. The most frightening one recently was actually waking up to one of these episodes. That has never happened before. I had actually had one shortly after going to lie down, then a few hours later woke up to one happening. It was the same symptoms as usual, the only difference with that one was the waking up from it part. Generally I have them after lying down and trying to go to sleep, or shortly after waking up, and occasionally when my mind isn't occupied with doing something. That was the first time I woke up to one, and what an awful way to wake up that is :\

It's to the point where I've started sleeping with my teddy-bear again just because it's relatively comforting to have something familiar and calming nearby when I come out of it. 'Course it still sounds extremely odd since I'm in my 30s and sleeping with a stuffed animal. But it kinda works to an extent. (Does that work for anyone else, or is that just odd?)

It's all very unnerving... And I honestly don't know which is worse... the sudden overwhelming "oh god it's happening again" feeling or randomly waking up to an episode.

 

[Nakamova]

is it common for them to change or get worse over the years if they're not being controlled well?

Yes.

Keeping a seizure diary can give you a sense of how your symptoms are changing, and how rapidly they are evolving. A diary can show you (and your neurologist) if things are happening more frequently, lasting longer, or changing qualitatively.

For me, the "oh god it's happening again" feeling is the worst. I've been seizure-free for several years now, but I still have occasional moments of panic when feeling "off."

 

[Sandie]

It must be really frustrating for you not having a proper diagnosis. It does sound like you may be having partials but I know how important it is to have a medical professional to actually put a name to your condition. Who cares if you sleep with a teddy bear. Do what ever makes you feel safe and secure. I would probably do the same if I had to but I am blessed to have a wonderful husband who knows when I feel weird and although he doesn't understand how I feel, he accepts that I need a reassuring hug.Besides, you can pour all your secrets out to a teddy bear and he won't tell (ha). Seriously, I really hope you get some sort of peace of mind soon. Take care.

 

[DancesWithPugs1980]

My boyfriend has a completely different schedule than I do... I work graveyard 3-4 days a week (compressed workweek), he works days 4 days a week; so I don't have a human cuddler except on his days off and he comes into take a nap lol. The teddy-bear does really work, I've had him for 30 years and he's definitely seen better days, but he's my buddy lol.

So, I guess another question? How likely would it be for these to evolve (I guess?) from partial seizures to grand mals? Does that happen? That's the last thing I want :\ These freak me out enough as it is. Or if you typically have them at a certain time of day/night whatever, do they ever have a tendency to switch times after awhile. These have always occurred right before trying to sleep/after waking up for the most part, no matter what type of sleep schedule I've had. Although when I switched to a graveyard schedule, I gave myself plenty of time to adjust ahead of time before my first night of work, and I've been on this schedule for a little over two years now. I have found that if I'm awake during a time I'd normally be asleep, these sometimes happen; which kinda doesn't make sense to me.

Anyway... ugh. Gotta figure stuff out. I really hope they don't start happening frequently at other times of day. It would make my job really difficult; I work in a fab and am around machinery. Also it's a bit of a walk from the nearest train and bus line. It's definitely walkable and it's not like the extra walking would do any harm (trying to lose weight), but I'd have to wake up way earlier to get there, which probably wouldn't help matters. I don't know if any of my coworkers live close enough to me to do the carpool thing.

 

[Nakamova]

There is no way to predict stuff with epilepsy. For some people, yes, seizures can escalate from simple partials to grand mals. They can change in every way -- kind, frequency, time of day. It could happen over months, or over years. That's why keeping a diary can help -- if gives you a sense if things are escalating. And truly, the safest approach is to nip things in the bud, before any escalation occurs.