New here - stressed and over it

[Aclaire]

Hi all. I'm in Australia and need some advice. I don't know anybody with epilepsy (as far as I know). I'm nearly 44 and was diagnosed in 2004 after a couple of noctural seizures, then a full on grand mal at work. I was eventually diagnosed with left non-lesional temporal lobe epilepsy.
I have regular (once or twice a week, sometimes less often) 'moments'. I'm aware of having them. I can't talk or respond properly to people. I can't remember/say my husband's or daughter's names. I can often wave my hand or sometimes even say 'just a minute ...' or walk away. It's a horrible feeling and I'm very relieved when I 'come back' to the real world.
Sometimes I have a sense the 'moment/episode/absence/whatever' is about to come and I feel scared because I know there's nothing I can do to stop it.
Does anybody have tips on how to manage them? It's been years now but I still get very down about it (i'm on a mild anti anxiety). I also had open heart surgery for a congenital valve problem a year ago so I just get down about what my body has gone through.
I get very angry I have to deal with this - and then am angry at myself because I know there are so many worse situations that others have to endure...
Any advice appreciated!

 

[Wobblez]

Hi Aclaire,

Welcome to CWE, I'm sure you will find comfort here. I have. I noticed you're in Melbourne. Have you heard of the Austin Epilepsy clinic? There is info on it throughout this site. You may want to look into it.

As for the anger, I've learnt to accept what I can't change and do the best I can. I also remind myself there are so many people worse off but that doesn't mean you can't still feel angry. Have you considered some counselling? This can be really beneficial because if it reduces your stress, it can reduce your seizures. It would also help with your anxiety. Cognitive Behavioural Therapy is amazing and scientifically proven.

Take a look in the Lemonade stand forum. I doubt you'll be able to resist a smile at least =)

 

[Pink Panther in heels]

dont be scared

Hi Aclaire this is Pink Panther in Heels I'm from I'm from California USA I have parteil epilepsy seizures I've lost my whole memory 3xs didn't no I was human lost my eye sight been in acomma with seizures 5 mins r less you see through it all I gave my daughter the best I could b4 death I enjoyed other things in my life it does hurt take away give pain embaressment helplessnes hopelesness loss of freinds don't lose you don't stop for you don't feel alone don't. stay awy from what you can do for everything it took from you as a friend with some experience live with it take care of it take care of you so life could make you be :e:able to just get back some of your smile even while it sticks around

 

[CQ:)]

Hi Aclaire,

Welcome to CWE & you'll be sure to get some great help & advice here.
I am wondering if these blank moments you are having may be partial seizures.

I used to take alot of auras which were often followed by either a simple or complex partial seizures. I never remembered much about what happened after my aura until I came out of the seizure but I have been told some of the things I've done during a partial seizure are staring into space, not making much sense when I spoke or I would just point.

I noticed you're in Melbourne. Have you heard of the Austin Epilepsy clinic? There is info on it throughout this site. You may want to look into it.

I am another Aussie & I had left temporal Lobe surgery at the Austin Health March last year & I'm currently part of the Austin Healths Epilepsy Program. I am actually due to go back to the Austin Healths Epilepsy Clinic in 2 weeks for my 12 month review
The Austin Health does have a great epilepsy clinic & epilepsy program with some excellent specialists but I'm pretty sure you will probably need a referral from your own GP or Neurologist to go to the clinic.

 

[jyearta]

Hi I'm glad you found this site.

I have found more infor. in this forum that has helped me and I hope this will be the case for you too. I want to encourage to go into the different forums, and you are always able to ask a question that is concerning you.

I too get angry, cause my life is not what it use to be. But I have to try to find something to be thankful for. --some days it easier to do than other days--

I'm 60 and I NOT going to allow E. to stop me completely. I just had a dinner party last night, 1st. one in many years. I enjoy this and have shut friends out, thinking what if I have a seiz. So, I put to much salt in a dish.

I ask all this to say--find what interest you and go ahead with it, don't do as I have in the past, letting E. (side effects) stop me.

 

[Nakamova]

Hi Aclaire, welcome to CWE!

If you're having blanking out moments, those may be complex partial seizures. The anxiety you feel may be a kind of seizure too. Either way, it's probably a good idea to talk to your neuro about tweaking your meds to see if it helps. You might also want to check out alternative treatment approaches like neurofeedback or dietary modifications. They have helped some folks with seizure control.

Best,
Nakamova

 

[LJ-Bain]

Wow...sorry to hear about your struggle.
I have multiple simple partials daily and finding a way to cope with them is something I struggle with too. I wish there was an easy answer...I find I have good days and bad days. I find that when I give in and try not to control them and try to mentally relax it seems to help. Mind you that only helps with before and after because during I can't even have a simple thought because the seizure just takes over. I too feel anger because even though you can have alot of support in the end you have to deal with it on your own. You wonder...why me? Then I think about how common it is. I think the statistic is 1 in every 100 and people start approaching me and telling me about a sister or a cousin they have who deals with epilepsy and I realize that I am one of many.
Telling your story helps.
We're all listening!