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Epilepsy advice and experience - I feel like I need some help


Smoka90

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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...

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Hey smoka, I'm not too familiar with epilepsy itself, but I think it's gonna take more than one visit to the neurologist to "fine tune" dosages, medications etc. Will you be seeing them semi regularly?  If not, it would be beneficial to be under their care. You're not whining either, you know people here, if anything someone will do their best to reassure or offer advice. Keep us in the loop though, once you start living in fear of it, it become a vicious circle. 

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I don't have epilepsy but my wife does. I know it can take some time to find the best med for you & a lot of them have side effects--she takes an antidepressant in part to combat the side effects. What really changed things around for her was getting a vagus nerve stimulator it's sort of like a pacemaker but it sends a regular charge to the brain to moderate brain signals and when she feels an episode is coming on she can pass a magnet over the device to send a stronger signal & usually prevent a seizure. It sound like you're in Britain & from a quick search it looks like national health has strict guidelines for who can qualify for one, but it may be worth looking into.

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3 hours ago, PTFC said:

Hey smoka, I'm not too familiar with epilepsy itself, but I think it's gonna take more than one visit to the neurologist to "fine tune" dosages, medications etc. Will you be seeing them semi regularly?  If not, it would be beneficial to be under their care. You're not whining either, you know people here, if anything someone will do their best to reassure or offer advice. Keep us in the loop though, once you start living in fear of it, it become a vicious circle. 

Thanks PTFC =) It was a 10 week wait till I could see the neurologist, and I've already got my follow up appointment with him - in June. I think that's just to see how I'm doing in the long term. In the mean time I think everything will be dealt with by my GP, who is pretty good luckily, but I wonder if there's any point describing the specific symptoms with him...but I guess he'll know how to interpret the scan results. Don't know if I mentioned, I have an MRI scan and an EEG reading, both next week. I also had to tell the neurologist about my opiate problems, so my GP now knows about that, and I'm seeing him next week. The neurologist reccomended treatment for the addiction. Will it be OTT if I make another thread about how to deal with that? Because I'm really not prepared to give anything up, not yet...

Thanks for the reassurance as always. =)

22 minutes ago, Biteme said:

I don't have epilepsy but my wife does. I know it can take some time to find the best med for you & a lot of them have side effects--she takes an antidepressant in part to combat the side effects. What really changed things around for her was getting a vagus nerve stimulator it's sort of like a pacemaker but it sends a regular charge to the brain to moderate brain signals and when she feels an episode is coming on she can pass a magnet over the device to send a stronger signal & usually prevent a seizure. It sound like you're in Britain & from a quick search it looks like national health has strict guidelines for who can qualify for one, but it may be worth looking into.

That does sound quite high tech, very effective. I think the NHS is much more...stingey, maybe is the word. I imagine they would only use that treatment for very severe cases...but, god forbid, if they ever get worse, I will certainly keep that in mind. =)

May I ask what med your wife was on to merit anti depressants? Sorry if that's too personal, you don't need to answer...

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Not at all smoka, you are of course more than welcome to start a topic in the addiction and recovery section, if any of us can help in any way through this medium, of course we will.

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12 minutes ago, PTFC said:

Not at all smoka, you are of course more than welcome to start a topic in the addiction and recovery section, if any of us can help in any way through this medium, of course we will.

Thanks. =) I will probably post that tomorrow, I'm shattered for tonight. Thanks as always. =)

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No problem whatsoever! Keep well mate, and I know it's easy for me to say, but try and not worry too much. I know the uni incident is still raw for you also. 

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She take topamax & to be honest I don't know how much of the depression is from the meds & how much from the disorder. I do know that she started on the SSRI after her diagnosis.

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Thanks to both of you. =)

Not familar with topamax, but I can easily believe that the disorder itself can cause depression. I just hope they make her feel better.

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Topamax is topiramate--it may be called something else in the UK. They're also using it off-label to treat addiction, so it may be useful for 2 things for you. She does really well the VNS & the meds & hasn't had a grand mal in many years. Good luck with your treatment.

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Thank you. =) I'm hoping as the carbamazepine dose is increased things will get easier...

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On 12/29/2015 at 9:34 AM, Smoka90 said:

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...

I got a traumatic brain injury in the service and suffer from seizures and migraines. I take Keppra twice a day and it keeps the seizures away. However I was recently in an automobile accident and suffered a concussion and have been having the small seizures(petit mal) as a result my memory is very short at the moment. It's hard to remember one day to the next. I'm ready for these side effects of the concussion to be over. My family even notices how I now forget some of the simplest things. I really hope this isn't permanent. I've suffered enough during my time in the army. Prayers please guys!

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Hey guys I haven't been on lately. I've been having problems with my seizures. I suffered a concussion as a result of a wreck. Afterwards it retriggered my seizures. One night I had a seizure and hit my head which gave me another concussion. I also cut my head when I feel and lost almost half the blood in my body.  It's been one seizure after another.

The ER won't help. Thanks to the VA prescribing me Valium I have been able to keep over 10 big seizures from accruing just these past 2.5 days alone.

The VA runs at a snails pace so no telling when I can see my neurologist and get the proper testing and have my meds re-evaluated.

any help and advice would be appreciated.

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Oh also just found out that a med the VA just recently put me on can cause seizures. So two concussions on top of a med that can cause seizures is a receipe for disaster. The drug is Lexapro. 

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Also I'm not sure if I should stop the Lexapro immediately or Taper myself off. Any advice is greatly appreciated! Sorry again for being distant lately. Just a lot of medical issues and no help from the hospitals. Only help I think I can get is from the VA and that may take up to 6 months. Until then all I have is my family here. Thanks guys!

i can't work or even drive until this is undercontrol. So any advice again is really appreciated!!!!!!!

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