Just wanted to say my first hello

[roo]

This is my first time on this forum and i just wanted to say hello to kinda break the ice. Hopefully I'll get the hang of posting properly so please let me know if i'm not doing it right!

I've recently been given a diagnosis of temporal lobe epilepsy, or at least my neurologist has written it as 'strongly suggestive of temporal lobe epilepsy' but is treating it as temporal lobe epilepsy if that makes sense. I experience both simple partial and complex partial seizures. I also suffer from M.E. (myalgic encephalomyelitis) which I've had for over twenty years and makes it difficult now to sort out which illness is causing which symptoms as I am now thinking that some of the symptoms i put down to M.E. may have been in fact due to the seizures.

There wouldn't by chance be anyone here who has both Epilepsy and M.E. would there? Not that it matters at all but I thought i would ask anyway.

It's almost 2 a.m. here in Australia, so i guess I had better try and get some sleep.

Hope to check in again soon. Bye for now

[Nakamova]

Hi roo, and welcome to CWE!

This is a great place for information and community. In addition there are forums for chatting and venting -- I hope you feel free to explore. I know we have a few other members from Down Under, so maybe you'll run into them here.

Seizures, especially temporal lobe ones, are a symptom of myalgic encephalomyelitis. So your seizures are most likely a consequence of the M.E., rather than a coexisting condition. You should check with your neurologist about this, to see if it makes a difference in terms of treatment. It's always a good idea to keep a seizure diary, noting when they occur, and what happens. In addition it's good to track things like sleep, activity, diet, metabolism, nutrition, hormones -- anything that might be a potential trigger -- so that you can potentially reduce or eliminate the resulting seizures. If the M.E. is causing your seizures, you might notice if things that help the M.E. also reduce your seizures.

Best,
Nakamova

[Meetz1064]

and how do you do?

I thought I'd pop in to say hi, and see how you're doing. I'm Meetz, and I'm very pleased to "meet" you.

There are a number of other Aussies here---CQ, KellyD, Jazz' Mum..........and piddle sticks, my mind has gone blank on the others. You'll eventually meet them, though.

Nooks and crannies abound here, as Nak pointed out--and there's tons of information in them. Some of us like to go to the Padded Room occasionally--venting is a GREAT thing to do as opposed to holding it all in. We've all been there before, I think.

I've not heard of M.E. before, thankfully Nakamova has. She is a wealth of information. RobinN is our Nutrition Guru around here, and she knows quite a bit about neurofeedback, too.

Keeping a journal IS a great thing to do, if you don't do so already. I have a list of things that I suggest putting in it for those who are new to doing it, with the reasons for doing so.

I hope you like our little dinner party here. Mr B has built us an AWESOME home here. Maybe Eric or Buckeye will bring some DECENT coffee around....I keep burning it.......

Take care!

Meetz

[flinnigan]

Welcome welcome. You're gonna love it here. Not just a huge source of info but incredible support. I too have temporal lobe E but fortunately no other conditions that complicate it. I'm pretty much text book. Read read read, ask ask ask, learn learn learn you're your own best advocate.

[roo]

Hello and thank you Nakamova, Meetz1064 & flinnigan for your warm welcome. It's lovely to meet you all. And thanks for the tips and help with navigation too

The confusion over the seizure ativity that some M.E. sufferers develop is what prompted the further investigations as my ME doctor said I had a very high neurological component to this illness. However the neurologist believes that the ME and the Epilepsy are separate, and said that I would have developed the E anyway regardless of the ME. I'm thinking this is because of the hippocampal atrophy and temporal pole dilitation detected on mri. I have siblings who have had secondary E. One had arachnoid cyst and the other following a vehicle accident - but hers was very mild and she is now seizure free.

I feel that one illness is and has been impacting on the other. Worse ME equals worse E. Worse E equals worse ME. You get the drift

I'm already on meds and supps for the ME and dietry restrictions, and it was just fortuitous according to the neurologist that I was already on low doses of Lamictal (which he has increased). He also suggested keeping a diary, which I am doing and will keep doing, so thanks for backing that one up too.

I've added a couple of links for you guys who don't know about ME. Hope that's all right.
SORRY! Wasn't allowed to post the links OOPS!
So just google Alison Hunter Memorial Foundation and the other one was, A Hummingbird's Guide. You should be able to find them.

Thanks again for your help and will post again soon.

Take care,
Roo

[Meetz1064]

you want to type the links in like www (dot)fredslake(dot)com, one of us can enable them for you...

[RobinN]

Hi Roo - welcome to CWE
Isn't it great to find others awake around the world at 2:00 AM?
We welcome you and glad to see that you already are finding your way and getting some great responses.

Hope to bump into you around the forum.

[roo]

you want to type the links in like www (dot)fredslake(dot)com, one of us can enable them for you...

Hi again Meetz! It said it wouldn,t let me do it because I'm a newbie (just in case I'm one of those internet mischief makers lol - something about "malicious trolls"). I'll try it again as you've suggested. Here goes!

NOPE! still won't let me! Drat!!

cheers,
Roo

[roo]

Hi Robin,

lovely to meet you and hope to bump into you too once I find my way around.

all the best,
Roo

[epileric]

These should be the places you were talking about Roo.

http://www.ahmf.org/

http://www.ahummingbirdsguide.com/

[roo]

Thanks heaps epileric. They're the ones. Absolutely spot on!

cheers,
Roo