Phenytoin issues

[amyjo]

Hi gang

Need to come on here for a little advice/rant (apologies in advance if this is typo-tastic, new ipad!).

So 6 weeks ago I was discharged from hospital after a 12 day stint with. Few episodes of status and some generally very nasty seizures in the mean time which were not self terminating.

I went into hospital on 1000mg keppra BD, 200mg lamotrigine BD and 15mg clobazam 4 days a month for lady times.
I came out of hospital on 1500mg keppra BD, 200mg lamotrigine BD, 30mg clobazam TDS and 100mg phenytoin BD. That's a hell of a lot more than I went in with. (Thank god for the NHS prescription service!).

So naturally, I am absolutely pooped on this many drugs. 2 weeks ago I returned to university to start my final year training as a PE teacher. I could have done with a lot more time off to re cooperate but final year academia was calling and I can't afford to miss lectures. However I'm finding it incredibly difficult to get through a day without needing to sleep. Sometimes I spend 2hours over the day napping, as well as getting at least 8hrs sleep at night.

I have told my neurologist this and we have agreed to wean the phenytoin as it was more to get me through the crisis. This year is so difficult, not only am I trying to write my dissertation, go on a 2 month final teaching placement in. 3 weeks time but i have also started my masters degree part time. I need to be at the top of my game but it's so hard. My friends always notice, my right side of my face goes droopy (not a good look for a 21 year old) when I'm having a bad day...and that's been pretty regular. I was always so active, running half marathons, a hockey player, a Gaelic footballer, sport is my passion but I can't bring myself to train.

As well as the side effects, I am now feeling the post hospital blues. At the time it didn't hit me but now I've had a few weeks to reflect, I am devastated by what has happened. I'd been seizure free for 7 months, the longest time yet after a difficult battle with uncontrolled epilepsy for almost 3 years. Now the dust has settled, I am utterly anxious about having more seizures.

Each morning I wake up and epilepsy is the first word that comes into my head. I am constantly paranoid and have to pep talk myself before leaving my bedroom to leave for lectures with my flat mates, even though they are awesome. When I'm in lectures I feel so shy and self conscious, even though I, sure most people are phased as we're a close knit group. But even in theory lectures, I feel like I constantly have to be doing something like tapping my pen or fiddling so that the lecturer doesn't thinking I'm having an absence seizure (they've reported this wrong before and it meant I had to delay my third year teaching placement). That in itself, along with the way their eyes glance over at me to check I'm still with them, at least once a minute, is exhausting. I'm embarrassed to ask them to turn off the lights when the projector board is on, because the combination of an overhead light, projector and a computer is now extremely painful for my eyes even though I'm not photosensitive. But I feel too shy and don't want to draw attention to myself by putting my hand up to ask for the light out. The hospital stint is now hitting me the severity of it, the time in neurology ICU which I have no recollection of. I'm just completely freaked out and currently a very tired, anxious, frustrated student trying to scrape my way through my 4th and final year to achieve my dream but am struggling at the final hurdle.

Sorry to rant

Hope you're all well

Amy x

 

[Nakamova]

Hi Amy --

It's normal to feel bummed in the aftermath of a hospital visit; seizures can take a huge emotional toll as well as a physical one. And you're right that the meds may be playing a role. Any chance the increased keppra could be affecting your mood? It can cause depression (in fact, all of the anti-seizure meds potentially can), so you should talk to your neuro to be on the safe side. I hope you feel better soon. Give yourself time (big seizures can take longer to rebound from) and treat yourself gently. Do what you can to minimize stress and improve your sleep and overall health.

If you feel up to it, try and clear the air with your lecturer. Let them know that you appreciate their attention, but that it's truly not necessary. Let them that what WOULD be helpful would be turning off the lights. And you might try wearing sunglasses or glasses with polarized lenses. (I'm not photosensitive either, but I'll put on my sunglasses or avert my eyes when there are strobes or bright headlights.)

 

[jyearta]

sounds like you are really having a hard time.

if there is sometime you can drop from your schedule! Lessing the stress.

I do hope you get to feeling better soon, just know you are not alone .

 

[QueenieKP]

Talk, talk and talk some more and try and access as much support as you can.

Do you have specialist epilepsy nurses locally? If you do ask your GP for a referal, mine worked out that a lot of my issues were pernicious anemia caused by the meds.

Do you have disability welfare advisor? Are you accessing everything you are entitled to. Are reasonable adjustments being made.

If the worse came to the worse and you had to temporarily drop something/s. What could you live with dropping? Could you defer your MA to put your energies into your final year teaching? How would you feel about that?

I took me 8 years to get my first degree because epilepsy and life kept throwing hissy fits but I got there. I am not imagining that you would have to put the breaks on for anything like as long, but sometimes we get so many plates spinning and epilepsy sticks its nose in and stops us spinning all the plates maybe you need to soul search and ask are there any you can put down.

Q