My latest seizure

[Rita68]

Hi there,
I introduced myself last year. I'm the single mum of a 2 year old from Australia and had my first grand mal in my sleep last August, another one in September and I've just had another one last week.

Not happy.

I started Tegratol last September but I have never loved how I feel on it. Went to a new neurologist who specialises in epilepsy. Saw him about a month ago. He suggested I try Trileptal which I've been on for a month or so - 600mg a day. Haven't noticed too much of a change yet. I missed a couple of tabs but only a couple and was rather stressed last week with work and then woke on Tuesday morning with a bitten up tongue, blood on the pillow, felt like I was really hungover and had been beaten up - you know the deal. And was devastated. I really thought I would never have another seizure. I was super stressed last year and was getting three hours sleep a night. I've changed my work situation and am getting more sleep and just really felt I would never have another one.

I don't know how to handle all this. I'm really depressed and anxious. I spoke to my neurologist on the phone and he told me to increase the meds to 900mg a day. Since the seizure and after getting over the initial intense tiredness and sore tongue and muscles I now feel super anxious with a pounding heart. Just before I literally felt it pound in my chest like i was about to have a heart attack or something. I'm dizzy and not sleeping well. Do you think this is just from the meds and I will adjust to it? I find dealiing with neurologists painful and impossible to get a hold of. I am booked in to have another MRI and some other sort of all day brain scan thing in three weeks so hopefully will get some answers.

And I'm itchy!!

Is this all normal? And how do you all deal with having epilepsy? I'm still trying to come to terms with it. I think I did manage to convince myself I would never have another seizure and now this has happened I'm not sure how to cope with it.

A friend two days ago was telling me how I should have a rubber thing in my bag and beside my bed and she said 'you need to come to terms with the fact that this will probably happen again'. I got upset with her because I don't want to think like this otherwise I will be too scared to leave the house, ride my bike alone or go to sleep!

Apparently I'm not supposed to drive for another three months.

I don't want to live my life scared. And I hate feeling this anxious. Need to start yoga and meditation.

Anyway I guess I just need to vent and see if anyone can relate to how I'm feeling and give me any advice.

Thanks for reading!

Cheerio x

 

[Nakamova]

Hey Rita, sorry to hear about the latest seizure. I think the anxiety and the fear is a pretty normal reaction to having a breakthrough seizure out of the blue. We all have the very strong wish (hope? fantasy? delusion? conviction?) that our last seizure is just that -- our last seizure. When another seizure comes along it's a pretty deflating feeling. But speaking for myself at least, the anxiety and sadness tend to fade away. After a seizure you get back on your feet -- literally -- and then you have to get back on your feet psychologically. It just takes longer.

Transitioning from one med to another can be stressful all by itself. Since you had the breakthrough seizure three weeks after starting the Trileptal, that sounds like either the med or the dose need tweaking. Upping the dose to 900 might help, but if the side effects you describe persist, you may need to try something else. The body needs time to adjust to each dosage change, so give yourself a few more weeks to see if things get better. The itchiness is concerning -- if it gets worse, or you develop a rash, swelling, or any of the more harmful Trileptal side effects, contact your doc at once.

t's nice that your friend is concerned, but if she's making things worse by stressing the negative, let her know she ned to back off. Yes it's important to be aware of the risks of having another seizure, but you don't need to dwell on them constantly, and you can't live your life wrapped in bubble-wrap. The yoga and meditation are excellent ideas -- they can really help, especially if you can find a group setting for either one.

I hope the MRI and scan are helpful -- let us know how they go.

Best,
Nakamova

 

[Endless]

Rita,

It's nice to see you back!

"Nervousness" can be a side effect of Trileptal. So I imagine anxiety could be, too.
Trileptal Package Insert

It doesn't list depression, but I know trileptal causes it. Because Trileptal made me deeply depressed. It cleared up when I went off the drug.

Seizures themselves can cause anxiety and depression - they do something to our brains. The stress of the drug changes can do it, too.

Gosh, you've got so much going on. I just hate switching meds, and I wish you didn't have to. But you do. So here's a big hug from me to you.

Hang in there.