- Joined
- Apr 14, 2014
- Messages
- 674
I always make these selfish and whiny topics, sorry, but I'll try and be quite brief.
Through my own stupidity and wrecklessness, I've ended up with epilepsy. I've seen a neurologist, and from a chat about my symptoms, he wrote in a letter it's 'probably focal onset epilepsy with secondary generalisation', I think this is because I always get distinct auras before, and *always* after a deja vu experience I have a tonic-clonic seizure. He put me on carbamazepine, the dose being tapered up. I haven't had a full seizure since that dose which started on the 18th of December, but I'm still getting some symptoms. It seems very similar to temporal lobe epilepsy in symptoms from what I've read. Especially with the dejva vu (which I now know is actually a partial seizure in itself...) spreading to a tonic clonic.
What I'm struggling with are the symptoms carrying on, and the anxiety of fear of having another. To make it worse, the anxiety of having one increases the chance of having one, as one of my triggers is stress/anxiety. So if I get myself stressed up enough, I could well have one. When I get anxious, I start to feel 'empty head' feeling, like my head's a balloon and just being poked around. Then I start to get the head pressure. Like two large fingers are pressing into my head on either side. It's so common, I feel it now. Then when the panic hits, it just feels like hundreds of shoppers are rushing into a huge shop on Boxing Day, banging walls, breaking windows, stamping on the floor, like a really chaotic surge. It's all so hard to describe... At that point I have to escape the stress, which might mean leaving a lecture, leaving the room, going to the bathroom. I've been panic attack free for years, but this fear has brought it all back. Are things like beta blockers here the answer? If not, what is?
The worst is every night when I close my eyes, all that starts. I don't know why. I'm not anxious then. Maybe it's because I'm not doing or thinking of anything. But that's every night, sometimes it sends a jolt through me and I have to ask my partner if she can turn the light on. A man in their mid twenties saying that...but it's every flipping night...perhaps there's one night in a fortnight where I feel okay.
The seizures come in clusters, I may have 4-6 weeks without one, then two within a week. One happened at Uni and I'm still not over that. I'm scared another one is 'due'. My partner cried when she was saying whenever I left the house she was scared the phone would ring. I keep thinking of the fear I get after a seizure, where I'm terrified of everything and can't figure out where I am. That I do remember, and it can last up to 45 minutes sometimes. My memory is beyond terrible, it's unpleasant not remembering basic facts and events.
I've fixed a few things. I don't take antihistamines anymore (they've caused them) and I haven't taken any tramadol at all for about three weeks, I intend to keep that up (so I will), but I'm still getting all these issues.
If anyone out there has epilepsy or can just advise me, I'd really appreciate the help. I'm sorry to whine like this, but it's isolating and I'm struggling a fair bit to get to grips with it...
Through my own stupidity and wrecklessness, I've ended up with epilepsy. I've seen a neurologist, and from a chat about my symptoms, he wrote in a letter it's 'probably focal onset epilepsy with secondary generalisation', I think this is because I always get distinct auras before, and *always* after a deja vu experience I have a tonic-clonic seizure. He put me on carbamazepine, the dose being tapered up. I haven't had a full seizure since that dose which started on the 18th of December, but I'm still getting some symptoms. It seems very similar to temporal lobe epilepsy in symptoms from what I've read. Especially with the dejva vu (which I now know is actually a partial seizure in itself...) spreading to a tonic clonic.
What I'm struggling with are the symptoms carrying on, and the anxiety of fear of having another. To make it worse, the anxiety of having one increases the chance of having one, as one of my triggers is stress/anxiety. So if I get myself stressed up enough, I could well have one. When I get anxious, I start to feel 'empty head' feeling, like my head's a balloon and just being poked around. Then I start to get the head pressure. Like two large fingers are pressing into my head on either side. It's so common, I feel it now. Then when the panic hits, it just feels like hundreds of shoppers are rushing into a huge shop on Boxing Day, banging walls, breaking windows, stamping on the floor, like a really chaotic surge. It's all so hard to describe... At that point I have to escape the stress, which might mean leaving a lecture, leaving the room, going to the bathroom. I've been panic attack free for years, but this fear has brought it all back. Are things like beta blockers here the answer? If not, what is?
The worst is every night when I close my eyes, all that starts. I don't know why. I'm not anxious then. Maybe it's because I'm not doing or thinking of anything. But that's every night, sometimes it sends a jolt through me and I have to ask my partner if she can turn the light on. A man in their mid twenties saying that...but it's every flipping night...perhaps there's one night in a fortnight where I feel okay.
The seizures come in clusters, I may have 4-6 weeks without one, then two within a week. One happened at Uni and I'm still not over that. I'm scared another one is 'due'. My partner cried when she was saying whenever I left the house she was scared the phone would ring. I keep thinking of the fear I get after a seizure, where I'm terrified of everything and can't figure out where I am. That I do remember, and it can last up to 45 minutes sometimes. My memory is beyond terrible, it's unpleasant not remembering basic facts and events.
I've fixed a few things. I don't take antihistamines anymore (they've caused them) and I haven't taken any tramadol at all for about three weeks, I intend to keep that up (so I will), but I'm still getting all these issues.
If anyone out there has epilepsy or can just advise me, I'd really appreciate the help. I'm sorry to whine like this, but it's isolating and I'm struggling a fair bit to get to grips with it...
It’s an extremely terrifying experience, I absolutely understand your anxiety. I never knew if I was coming out of the next one. Every brain scan would show perfectly normal brain functions and docs were all baffled as to why this kept happening along with the sudden onset. Never did get a diagnosis. 
