Its a tough one, to try and answer 'how do I feel since my temporal lobectomy surgery to eliminate my seizures'.
I don't know where 1 FULL year has gone!.. It literally feels like I had my surgery a month ago.
Since my surgery, I've not had a seizure, which was (obviously) the whole point, and I feel blessed in that sense.
Quality off life can be put into a different category...
My issues since the surgery have been the random auras I've had, which does take me a back a few steps... That intense fear "am I about to have a seizure" is still prevalent.
My boundaries are very much unclear, what can/can't do (Eg. If I'm on a treadmill, should I push myself to chase that last kilometer, or as I did pre-surgery, to STOP if I ever felt like I was 'over-working' myself?...
That's how I've lived my adult life, that constant fear, the 'tremors' I'd have seconds before my seizures still seem to happen.
My anxiety/depression seems to have popped their ugly heads over the past few months. Mental strains seem to be an issue post surgery.
I think the following issues are down to taking anti epilepic medication for years, and the long term effects...
Feeling extreme fatigue,
being far more temperamental, (which do seems to be more prevalent post-op).
My memory seem it have become ever worse, but slowly improving over the past 12 months. Hopefully that continues.
By bones feel extremely brittle,
My muscles feels Weak.
I seem to have constant paranoia!? What others think off me, what I may have done/should have done after having spoken to someone etc...
I'm having therapy to help overcome any issues with anxiety I may have, so I'm hoping I get over the hurdle.
Anti-epilepic drugs really are the most horrible thing in the world.
I'm 100% happy I had the surgery. Stopping my seizures were more important to me than the side-effects off the surgery I've had.
If my seizures were to ever return, then I'd REALLY struggle.
I feel like I'm still going through my stages off recover, which is weird to say, considering I has my surgery 12 months ago!.
I think I've covered most off what I can think of..
Just an update post surgery. So it's been 1.5 years since my surgery, and (touch wood) I've not had a seizure in that time. I've been fortune to have gone without a seizure (compared to others), the longer I go, the less likely it is I will have another breakout...(according to my consultant).
I'm STILL on meds (keppra and lamotrigine), which I hoped I'd be off by now!?...
I have had the odd 'aura', best way of describing it is the very initial symptoms of when I used to have seizures, but that's all.
Whilst I type this, I'm trying to look back at the absolute turbulent times I've had, pre/during/post surgery, and still wonder how I've made it this far!. I really do feel I went through some serious depression, and still have moments I absolutely close myself off to my family/friends, and turn into an absolute recluse, but I never opened up to anyone about it, though I did have therapy for anxiety I suffered.
If I feel the depression continues, I will end up seeking help from my GP.
Other effects, my awful, awful memory is definitely at the top of the list, I'm waiting to see a neuropsychologist, but the waiting list is massive. Hopefully I'll get some help to improve my memory.
I'm not sure where things will go in the future, but the surgery has helped with controlling my seizures, which was all I wanted at the time, REGARDLESS of the side effects!
A side effect I'm now finding UNBEARABLE is paranoia. It's driving me crazy!.
Anything I do, I say, I see, I hear etc...just makes me absolutely loopy. It really is getting on top of me now, my marriage is starting to get effected badly, probably down to a mix of being on keppra and the mood swings I seem to have, and on top of that my paranoia which I feel is slowly getting worse!
Considering I've gone and had surgery, and it's now been almost 1.5 years since my last seizure, I doubt my Neurologist will be happy for me to CHANGE my meds, I've been under the impression I will be slowly weaned off the Meds, so hopefully that will help things!
I'd not suffered with this sort of paranoia pre-surgery, and have been on keppra for 4(ish) years now.
I had a pretty bad spell of what I believe was an anxiety attack last night.
I've never had anything like that happen in the past, but at one point I did feel like I was on the verge of a seizure breakthrough.
I woke up after a few hours of sleep, felt real difficulty breathing/shortness of breath.
It carried on, so I got out of bed and walked around. I KEPT have this weird sensation, that sudden gloomy feeling, then a complete flip of feeling things will be ok. It just kept going back and forth.
I wasn't getting anywhere walking around so went back into bed, that's when I begun shaking (full body).
I went downstairs, had a cup of tea, my Mrs was up and awake by then, so was there to reassure me I wasn't having a seizure (but whilst I was having a lie down I'm convinced I did have a mild seizure, but so much was going on, I can't be certain.
Any advice, I have felt a little zoned out today, a little fearful of what happened!
Definitely take it easy today. Make a note of what happened so you can share with your neuro, and in case it happens again. (But fingers-crossed that it doesn't).
Do you have any daily anti-anxiety strategies? If you don't already, I recommend taking a few mini-meditative breaks a few times a day, and maybe before bed. Nothing fancy, just five minutes of mindful breathing or progressive relaxation.
Side Note: Have you ever had a sleep study, or been tested for sleep apnea? Nighttime breathing issues can make you feel like you're having an anxiety attack. And for quite a few CWE members there seems to be a connection between apnea and seizures.
I really don't know what to think at this present moment, my mind a scrambles all over the place with confusion. I'll need to see my Neurologist when I'm able and see what he thinks, but I can't bare the think I'll have another one of those attacks I had last night.