So a huge change in my life..I'm having seizures. Just looking for support, comfort, and experience?

In My Humble Opinion
1

I haven’t been diagnosed with Epilepsy yet, but I don’t think it’s too far off. These are definitely regular, brain seizures…although from what I read, I’m having the PARTIAL (focal ones, mostly…so the small kind) ones…and, so far, only one bigger one where my body turned to stone, was paralyzed, my head forced back into the pillow and I went on this wild ride through my head (it felt like), while a sudden rush was going on. Feeling like I was arriving at a destination, almost.
I don’t know the name of that one yet…you’ll have to excuse me, this is still all so new to me…
…but while I’ve yet to see an actual doc, I have been to over 3 hospitals in the last five days and also had family/friends around while I’ve had an attack.

My focal ones seem to come mainly (well, so far, ONLY) when I sleep. I will go to sleep (often with myoclonus going on in my limbs as I do, getting more intense the closer I get to completely drifting off) and then one of two things will happen:

I will either have a seizure right then, after entering a dream…
or…I will have a seizure whenever I wake (after a good long night sleep), but still from a dream.

This leads to much of this:

Bolding and italics mine

So…uh…basically, long story short…whenever I got to sleep, I have a seizure. It’s happened the last 5 times I’ve gone to sleep now, 2 times as I was waking up after the night passed and 3 times right as I hit REM sleep (so, not long into sleep, in which case, I’m more wide awake as ever).

Hospitals have me on three meds for it so far. Adivan, Buspirone, and Quetiapine. I haven’t taken the last one yet, though, because it makes me a little scared still. :stuck_out_tongue:

I’m supposed to be getting an actual anti seizure medication soon, but the doc wanted to hold on to that one first just to see.
But no worries, I’m not looking for medical advice or anything like that. I already have both another Doctor’s visit lined up on Sat AND an appointment with a Neurologist soon after that.

What I am looking for, maybe, is a little comfort? :o These episodes have been so new and scary and unexpected for me…especially as intense as they’ve been, lately, where I actually get delusions and sometimes hallucinations (from waking up from dreams while I have my seizures), and sometimes lost or distorted time…all that…it’s just…it’s not helping my worry and anxiety level.

Just want to know I’m not alone.

2

This sounds terrifying! It seems like you’re handling it way better than I could ever hope to. I’m sorry I can’t commiserate, I have no experience with seizures in people aside from an epileptic co-worker I had once, and who was well controlled on a couple different anti-seizure meds so I didn’t witness any. I have a cat on phenobarbital, she has these weird seizures that make her drool, spin in circles to the right, all her fur stands on end, and she’s so hungry afterwards!

It appears you’ve already absorbed a lot of information with a crash course in what’s going on, good on you for familiarizing yourself with all of that. I hope it really is a sleep/anxiety issue and the neurologist finds nothing.

3

:frowning:
Sucks. Good luck. May you have many good days and have strength to navigate the bad ones.

4

IT, you’re not alone. I don’t mean I have seizures, I don’t. But people here know you and care about you and that will just get more and more readily apparent from this night forward.

Julius Caesar had probable complex partial seizures, so you’re in good company. He seemed able to get things done reasonably well. The things you highlighted from the Wiki article are interesting. You’re able to interact somewhat normally with your environment and people around you? Did you have a seizure tonight? If this is prying or too much for you in any way, just disregard it.

I’m glad that you tell us you have the close support of family and friends. Your family here will offer you all the support we can through a message board, as do I. I hold you in my thoughts ongoingly now. Take care.

5

What I came in to say. Good luck as you move forward with this.

6

Oh man, I’m so sorry to hear this. I can’t imagine how terrified I would be.

Please know I’ll keep you in my thoughts. I hope the doctors can help you very quickly.

7

It may be a pain in the ass and they may have to try you on several different medications to find one that works well for you, but eventually they probably will. That’s what basically happened to a family member of mine that started having seizures in her mid to late 50’s. It was a process of trial and error there for a while and a struggle for her personally but eventually they successfully found a medication to control her seizures, she might have a random one but the seizures are spaced months and months apart.

She also can’t drive anywhere anymore, but other than that she seems to get along pretty well and she still works. Hey maybe you’ll get your own personal chauffer!

8

Best wishes that you get these under control.

One question and a little of a personal story. I have chronic migraine, which is a neurological problem that can cause some weird things. I often have issues of half-awake dreams, sometimes very scary. But I am able to remind myself that this is my weird neurology, and that I take strong meds, so just go with it, it’s not real, and it will end soon. Are you able to do something like that with your hallucinations?

9

Wow! I am very sorry to hear of these frightening developments. You must be remarkably unnerved, I should think.

I hope you get to a specialist soon, and that they get this sorted and find a med to alleviate your symptoms. I can only image how concerning this must be to those around you who love and care about you, they must be terrified. I know I would be were this happening to someone I love.

We’ll all be pulling for you, that’s for sure. Know you’ll be in out thoughts in the weeks ahead. Try to stay positive, and not worry, hard though that must seem!

Sending you a tsunami of brain calming vibes!

10

Story to tell…

I was in EMT-Intermediate school, and we had just finished the unit on neurological issues.

I was driving home from work, and stopped at a grocery store to pick something up. As I walked in the front door I heard, “Call an ambulance! Call an ambulance! He’s having a seizure!” Some moron is pushing a shopping cart with a guy unceremoniously dumped inside towards the front door.

I stop the cart, and saw the seizure guy was starting to come out of it but could not yet talk. A relative of the seizure patient also showed up at the same time, and the two of us helped the guy out of the cart. I asked him if he was OK, he nodded yes, and I gave him a quick look over for injuries. He was OK, and left quickly because of severe embarrassment.

The relative explained that the patient knew he was going to have a grand mal from the aura effect, and he went into the grocery store to the men’s room to have some privacy. Apparently, the moron walked in while the grand mal was in progress and freaked. He even tried the old bad advice about prying the patient’s mouth open and putting in a wallet so the patient doesn’t ‘swallow his tongue’ (which really can’t happen unless you’re Gene Simmons from Kiss). The moron then loaded the guy, still seizing, into a shopping cart and went barreling to the front of the store.

When the moron settled down, I tried to explain to him what we had just covered in class, but he wasn’t buying any of it. That’s why he is always referred to as moron.

Moral of the story: If someone is having a grand mal, let them go unless they are in a situation where the shaking can cause injury. No wallets, no holding them down. When they come out of it, be a calming gentle and supportive voice.

11

Idle Thoughts, so sorry to hear you’re going through this. Best wishes and {{{internet hugs}}}!

12

Idle Thoughts, we’re here for you. You KNOW we wish you well.

I’m hoping that this is just some reaction to something new in your environment & that its an easy remedy… but no matter what, we’re here for you…

13

That sucks Idle. It’s a bad interlude, but not the end of things. Just try to ride it out for now.

Best of luck.

14

Seizures have to be a scary things. I sincerely hope you respond well to the medication/treatment and get this behind you quickly. You know we’re an unruly bunch here, but then the chips are down, we’re an extended family. Best wishes from your extended family.

15

I had seizure-like activity after an injury many years ago. The doctors never officially called it epilepsy, but my EEG was abnormal.

I was having what appeared to be complex partial seizures complete with auditory hallucinations. I would “hear” things that clearly were not real in situations that I knew I couldn’t be hearing that. I was aware they weren’t real but it was still unsettling.

Eventually some really weird blood flow issues were identified and corrected. And with that, the “seizures” went away. It was only a few months and has never come back.
Even if it is epilepsy, it is a very treatable condition. May take some time to get things under control, but you’ll get there.

But maybe it is something a little different and with diligence the cause can be identified and treated.

Good luck.

16

Are you crying wolf again?

17

Excuse me for being direct, but why have you not seen a doctor about this?

It may be as easy as taking medication to correct, or it may be a severe brain tumor. Self diagnosis isn’t the best course of action here.

18

Hang in there buddy.

I don’t actually have epilepsy, but I do have an epilepsy story: When I was 10, I was having fainting spells. My parents took me to have some tests done (EEG, and maybe an EKG, I wore a monitor for a couple days, etc). A few weeks after the the tests were done, a letter arrived addressed to me (a 10 year old, mind you). I opened it, and, while I don’t remember the exact wording, it basically had the word “epilepsy” in big red letters a few times in the letter/chart. I ran to my mother bawling. Turns out I didn’t actually have epilepsy, but the lab got quite a chewing out from my parents for addressing such a thing to a child.

19

You sound like you are holding up admirably under what must be incredibly stressful and difficult circumstances.

I really appreciate your description of what the seizures are like. Someone very dear to me suffers from seizures and I feel like I know a little better what is going on from the first-person account. Thank you for this insight.

I hope you are able to get some medical answers and relief very soon.

20

He has an appointment scheduled for tomorrow.

Spirits up, buddy. We’re here for you.