Hellooo

[sparkiesuze]

I'm new to this, only started getting seizures last friday, had another today, both my sister and uncle suffer and I've pretty much been given the sad verdict without having had an EEG (returning to neurologist on tuesday)
Fortunately I have recognised the signs, my body seems to give me adequate warning before it kicks off, and I've yet to loose conciousness completely..
So I guess the message here is.. chin up!!!
I look forward to hearning from people..!

[RobinN]

Hi Sparkiesuze - Welcome

Just want to let you know that the "verdict" isn't always fact.
One idea is that you could possibly all have a genetic condition called celiac disease. You could all have sensitivity to wheat or another food item. It doesn't have to mean that you all have a "genetic brain disorder". Many times the genetic factor is that our ancestors came from a particular place on this earth. As hunter gatherers our bodies were only able to process foods from that region. So in fact it could be that your body is not able to process current food items.

Hypoglycemia is also a possibility. So don't rule out causes that can be corrected through nutrition. Just consider that for .... ?..... years you have been seizure free. There is a reason that you have just begun having seizures.

Just consider it.
Nutrition has been controlling my daughters seizure disorder.

[Meetz1064]

a point. You might want to start keeping a journal, especially of what you eat, but of also of what happens when you seize, too. The journal will help you and your doctor hopefully figure out what your triggers are. Here's what most of us put in a journal:

1. Sleep--how much, when

2. Eating--how much, when and what

3. TV/video/computer games--how much, when and what. The reasoning for this is that you may actually be photosensitive, and not know it.

4. For women, menses--yes, this can be important, as some of seize around our time of month. It's called CATAMENIAL EPILEPSY.

5. Auras--these are the warning signs that you may or may not have ahead of time. Pay attention to them, and write what you remember about them down.

6. Seizures--what do you remember about them, if anything? Write it down. Get witness accounts and write them down.

I'm forgetting a couple of things.......dangnabbit..........you might want to look at some of the other welcome posts to see what has been recommended to put in the journals, I really need to put this in a Word document.

Anyway, here's a few other things to know:

***************************

SLEEP: 7 to 7.5 hours MINIMUM, no ifs ands or buts about it.

EATING: Skilly, one of the other supermods, promotes eating 6 small meals a day, and I think she's onto something. A protein for every carb, and nothing more than will fit onto a dessert plate. Also, check out the different diets here.........you would be surprised how they might help you.

TV/COMPUTER/VIDEO GAMES: IF it turns out that you ARE photosensitive, then you are able to get glasses that have polarized blue lenses to help dea with this problem. It may not make it perfect, but it will help....

MENSES/CATAMENIAL EPILEPSY: Sometimes this is tied to ovulation, sometimes it is tied to the other portion of women's cycles. However, catamenial epilepsy really does exist. Things like bioidentical progesterone are a good start at helping to control it, but you may still need meds to do so.

AURAS AND SEIZURES: that's self-explanatory, I think.

Hopefully this helps some.

Welcome to CWE, by the way. I'm sure you're going to find that there is tons of information in the different nooks and crannies, such as the Kitchen and the Library. The Padded Room is great for venting, when you need to.

I think that you'll find that our host, Mr B, has built us an AWESOME home here at CWE....

Maybe someone will bring around some decent, non-burnt decaf coffee. I keep falling asleep while I'm making mine........

Take care,

Meetz

[sparkiesuze]

Thanks guys, I'll keep notes of what goes on, fortunately the only seizures I've had have been witnessed by medical staff at hospital and at my workplace so I've had thier notes photocopied to take with me when I see the neurologist, and it helps that I was fully concious through both episodes.. will let you know what the doc says tuesday =)

[Loopy Lou]

You're in the UK and you got to see a neurologist that fast? I had to wait nearly 4 months and i haven't spoken to him personally since!

My neurologist gave me a preliminary diagnosis of epilepsy too when i saw him and then it was confirmed after a couple of tests although i might have to go for one of those 24-hour eeg thingies. My meds are still being tweaked and worked through at the moment.

Have a good nosy through the site - it's a good'un :P

[sparkiesuze]

Well my original appointment (with the NHS) wasn't till August, but as I'm still covered by my dads private healthcare we went private with it and got it bumped up to next week. It took 3 years for my sister to get a diagnosis and I'll be damned if it takes that long to sort out what's causing my fits!

[MYBAYBEE]

Sparkiesuze:
Take it one day at a time and everything will be alright. Make sure to take your medicine. I never know when I will have a seizure, but I know that I only have them in my sleep and before it comes on I make a loud funny noise and I bite a hole in my tongue every time. I am very combative (fight) when I am coming around after the seizure. I know it scares my husband to death and my children (ages 23-male, 8-female), and my parents also. I'll be checking to find out how you are making out. Get all the test done. MRI, EEG, and all your Blood work. Sleep Study. If the neurologist name it you get it. LOL. ALWAYS ASK QUESTIONS IF YOU DON'T UNDERSTAND!!!!! It might be a pinched nerve , something in the brain triggering it and let the dr. know the family history on both sides of the family and with siblings. Good luck and I will continue checking on you. I am so happy I found this site. Now other people know what I go through!!:

[Loopy Lou]

Well my original appointment (with the NHS) wasn't till August, but as I'm still covered by my dads private healthcare we went private with it and got it bumped up to next week. It took 3 years for my sister to get a diagnosis and I'll be damned if it takes that long to sort out what's causing my fits!

I need to get some of that private healthcare lol! I'd like to have one of the EEG's done where they do it for a day or so. (Well, i wouldn't like to have one, but it may be helpful) but i'd probably be waiting for years!

[RobinN]

Loopy Lou - Rebecca had a 24 hr one and it wasn't helpful at all.

[brainwavez]

I agree, keep your diet in check.
If I go too long without enough protein, I am just opening the door for a tripple grand mal that night or the next.

[RobinN]

Certainly the hospital is not the place to get good nutrition. Rebecca's plate consisted of mostly white foods. Actually I think they let her pick the items. Their fruit juice was HFCS.

Study Finds High-Fructose Corn Syrup Contains Mercury

[Loopy Lou]

Loopy Lou - Rebecca had a 24 hr one and it wasn't helpful at all.

Ah buggrit...

[Meetz1064]

that SOMETIMES the 24 hour ones don't ALWAYS work........if it's at all possible shoot for one that is 48 to 72 hours......or as my neurologist prefers, 96 hours! *eyeroll*

[sparkiesuze]

Well.. I have an MRI at 2.30 today, bit nervous!
Saw the neurologist, he's a bit baffled because (and this is odd) I've not lost conciousness while having the seizures =S
They've been getting more unpredictable, I fell off my desk at work a couple of days ago it was humiliating..
I've been told not to return to work till I've got all the results and that back, I'm really bummed about that cause I love my job and I feel useless cause there is no one to cover me while I'm gone =(

[Loopy Lou]

The MRI's aren't so scary. I was a bit nervous when i saw the machine, but it was ok. Just curious - which hospital do you go to? I go to Preston cos it's got a great neurology department. The problem is that the department is in the a**e end of nowhere in the hospital! You have to walk nearly a mile to get to it lol.

They just put like a cage kind of thing over your face, give you a pair of headphones (it's noisy) and a panic thingy in case you get worried or scared and want to be taken out again.

Luckily for me, my work didn't tell me to leave while i was having the tests. I think they were worried i'd sue them or something if they did.

Good luck!

[RobinN]

Rebecca has had two MRI's and she sailed through them with no troubles. She was able to talk to the radiologist if necessary, and he to her. Just find a peaceful place in your mind, and enjoy the vacation.

[sparkiesuze]

Well I'm back, it didn't go well - my left leg started to spasm and they couldn't continue.. how embarrasing =(
They're going to arrange it for another time and give me a sedative beforehand, I just want it over and done with!

[Loopy Lou]

Oh, i'm sorry it didn't work out right. Don't be embarrassed though - they probably see stuff like that all the time.

Hopefully it will go better next time.

[sparkiesuze]

Had the second MRI, went much smoother (they even let me listen to a caribbean steel drum cd while I had it done!) Got an EEG tomorrow, and get the results tuesday hopefully. Feeling much stronger than before, and I've only had a couple of seizures in my sleep since (woke me up though)
Just glad to be feeling relatively well for a change =)