Hello :)

[TempusFugit]

Hello there

New to this forum so thought it would be a good idea to say hello

Just trying to get up to speed on all the topics - but I must say that you have a very informative forum and seem like a nice bunch of people!

*hugs*

[Nakamova]

Hi Tempus Fugit,
Welcome to a great site. Hope you'll find what you need. Time flies, and so must I...
Nakamova

[RobinN]

Hello Tempus - WELCOME

We are a very nice bunch of folks, if I do say so myself.
I am sure you will be kept quite busy reading all of our wonderful information. I hope you find it useful.

[skillefer]

Hi Tempus! Welcome to CWE. yes, we have a fantastic group here. So feel free to ask questions, chime in, or just vent in the padded room when needed. Also, check out the library here. It has some great info.

[brain]

Tempus ...

Glad you've found a good place to roam around
and make yourself a home and feel free to post
and ask questions!

[TempusFugit]

Thank you very much for your kind welcomes

I have tried three times now to explain what is going on with me - lol, but chicken out each time :/ It's probably nothing you haven't heard before - but part of my problem is acceptance. I have been in denial for quite some time but it looks as if I have to "wake up and smell the coffee" as my Neurologist so eloquently put it!

I will get there eventually - just waiting for test results to come back and all that - but have been put on Keppra this week, so am still in shock. Also the fact that I cannot drive has kind of knocked me for six, but I accept the reasons for this precaution, but it still hurts nonetheless.

Thank you once again

[skillefer]

Well, feel free to go into more detail when you're comfortable. As for Keppra, from what I've heard, a good med for some people. Just keep an eye out for mood changes. The mood shifts ( a side effect) have a nickname called Kepprage. Those who have had it find that a vitamin B6 supplement usually helps. I feel your pain on the not getting to drive....I couldn't get my drivers license till I was 21. It's hard watching others drive and not being able to. Lucky for me, my friends were pretty cool about giving me rides. There are some things that you can do to help your meds be more successful...

1. Eat 6 healthy meals a day. (no fast food or junk food...and make sure that their small enough to fit on a dessert or salad plate. Also, if you have a carb, make sure you have a protein.) ( low blood sugar can trigger seizures)

2. Get 7-7.5 hours of sleep every night MINIMUM. (sleep deprivation can trigger seizures)

3. Develop healthy ways to deal with stress. (exercise, walking, painting, writing, yoga, meditation, prayer, etc...)

4. Avoid Caffeine. ( no tea, sodas, coffee, mate, energy drinks, etc...caffeine is a stimulant, which is the last thing any of us need.)

5. Avoid OTC meds for flu or colds...(antihistamines and decongestants are known to trigger seizures)


When you feel more comfortable with what the neurologist told you, then you might want to see if you can figure out what triggers your spells or seizures. If so, then try keeping a journal that keeps track of the following...

1. food and drink (what, when, and how much)

2. sleep (how much and when)

3. stress (what and how your dealing with it)

4. any supplements (vitamin or herbal) that your taking (when and how much)

5. OTC meds (when and how much)

6. If your a female, time of the month and how long your cycle is (hormone shifts can trigger seizures)

hope this helps. As I said before, welcome!

[RobinN]

Tempus... also keep in mind how many years you were seizure free. Now it is your job to return your body back to that state of health and raise your seizure threshold. Figuring out why it is lowered is the key.

[nana1]

Tempus
Welcome to CWE!!! I do not have a license. Never had a license. Never would get one, in case i had a seizure while driving and i might hurt (kill) someone else or myself on the road. To me it better save then sorry.
I take Keprra as just one of my meds. I have headachs 24/7, but that my side effect. Not everybody has that side effect. But if i get off keppra, my neurologist told me the headachs MAY go away, but i will get more seizures also ( not good deal their). I am not seizure free, i may never be.

This forum is a great place to come to. I can let off steam when i need to ( you will need to at times). Other rooms do have information. Their is a creative writing room, a room to play games ( you use your mind to think when playing these game, they fun).

[TempusFugit]

You have all been so very kind - especially with the advise and encouragement.

I should have said in my initial introduction that I am female (so the advise about our monthly curse is very apt for me!)

I suppose really I am still in shock. I am quite stubborn and I never really accepted in the first place that I have epilepsy - still don't want to believe it now :/

I was fine until March (well, at least I thought I was fine until then - but then my husband has been noticing that I have been having 'moments' for a number of years). I used to have tonic clonic's and went into status on three separate occasions ten years ago. I took a combination of medication for a couple of years, but in the end I decided to come off them (again, my stubborness overruled my commonsense.

However, it now appears that the seizures are different. In March, I had an awful sensation in my head (heavy pressure building, people talking sounded distant, became dizzy and I couldn't speak or move). This lasted only a few seconds and I put it down to perhaps not eating, thirst or whatever. However, they have become more and more frequent and unbeknown to me, I have been having 'absent moments' at least every other day in front on my husband (a fact I was unaware of until my neurologist asked him whether he had noticed anything unusual too). I also have been having terrible headaches - but put that down to hayfever (lol.. I have an answer for everything *sigh*)

There have been two 'notable' ones - one when I was driving my car and I couldn't even move, the left side of my face dropped and I couldn't stop the car as I felt my body just couldn't move. This was so scary as I had my children in the car at the time. Fortunately, I didn't crash - but this incident led me to go to my GP a couple of days later. He referred me back to my neurologist - it never crossed my mind that it could be seizures

A few days after this incident, I was at work and I collapsed. Same sensation again, without warning. My colleagues informed me that I did have a tonic clonic for about three minutes - however, I just couldn't accept this at the time.

I am not sure what is going on right now, I don't know what on earth has caused this 'relapse' - but I suppose I am really quite afraid and unnerved at what I thought was a little fuss over nothing.

Ugh.. I didn't realise this post was so long! Sorry about this - there is more but I will expand if you want me too!

[skillefer]

LOL...never apologize over long posts...heck, you should see some of mine!! As for seizures flaring up after a long time without..I know that. It's disconcerting. And when it happened to me, it ticked me off and made me so mad and sad. And yes, seizure types can change. which can also really bite. so trust me, you aren't alone.

[Meetz1064]

to CWE, Tempus!

I'm sorry to hear that the seizures have returned after such a long time. And I do know the feeling of stubbornness quite well---I still have that problem.

But, once you admit that the E is back, then you can turn your mind to more positive solutions, and getting back into its tiny little hole Sure, E is a pain in the arse, but you can't let it run your life. Just manage it well, and figure out what started it up again, and work from there.

Skilly gave you some AWESOME information--you might want to seriously consider some of it. As for the journal, OK, it too is a pain in the arse, but if it helps you and the doctor figure out what caused the E to rear its ugly head again in the first place, then so much the better.

In the meantime, sit back, kick up your feet, and enjoy yourself here. There are plenty of nooks and crannies to check out...the Library and Kitchen are chock full of information, and there is a Padded Room to use when you need to vent. Mr B, our host, has built us an AWESOME home here.

Somewhere, there is some decent coffee.......I keep burning mine cuz I keep falling asleep.......

Take care,

Meetz

[TempusFugit]

Thank you so much - I personally feel that this forum has made me 'get my head around things' and given me some sense of perception. For that, I thank you all

Meetz - you sound pretty much like me in terms of attitude - lol I think I will help myself to coffee (decaffienated version of course!)

Skilly - thank you, thank you, thank you. xxx

*hugs*

[skillefer]

No problem. It's what we're here for...to help each other.