Just diagnosed

[moonchild1970]

Hello everyone. I am new here. Just diagnosed this past Thurs, the 27th. With Grand mals. Was wondering does anyone here use walkers, canes or wheelchairs? The seizures are bad enough but the absolute fatigue and weakness in between is totally exhausting me. Daughter likes to go to the mall alot so a friend gave me a wheel chair today, but for some reason, I feel weird about using it.

[Loopy Lou]

The tiredness is really a killer. I tend to stay in the house when i feel like that. Unless of course i have to go to work lol.

Anyhoo welcome to the site. I was quite recently diagnosed too (march this year), and i've found the people on this site very helpful. They've even put up with my questions and my moaning

-Louise

[Dutch mom]

Hello Moonchild, welcome on CWE!

My special needs son is double handicapped and has a bad childhood epilepsy syndrome.
He's in a wheelchair and we do use a special needs stroller. In his daycare center he's using a stander and a walker.
My son can't walk but if he could, he would need ar least a helmet for protection and we probably would need a wheelchair or stroller because of his epilepsy.

[Nakamova]

Hey Moonchild, welcome to the site.

Are you seeing a neurologist? He/She might have some advice about dealing with the exhaustion. Ideally, you'll be able to get seizure control, and the post-seizure fatigue won't be an issue. In the meantime, I do think your body is truly exhausted after a seizure, and needs to recover, so be careful about pushing yourself. If you need to be out and about, start with a cane, see if it helps. If it does, or if a chair feels better, give it a shot a few times. If it still feels weird, then take a break, and think it over again -- you don't have to commit to it.

Best,
Nakamova

[Meetz1064]

and how do you do, Moonchild? Mmmm, I'd be getting extra sleep and telling your daughter to catch a ride with someone else...you shouldn't be driving for a while anyway. She may not like that, but she hopefully will be grown-up enough to understand.

Do you know what caused your tonic clonics (grand mals) in the first place? And do you have a neurologist lined up?

Feel free to check out the Library and the Kitchen for lots of good information, including diets that will help with seizure control. The Padded Room is great for venting when you need to--trust me, we've all been there a time or two.

Mr B has built us an AWESOME home here. So, feel free to kick up your feet, sit back and relax. Make some new friends and chill.

Don't worry, we'll be here for ya.

Take care.

Meetz


PS Don't forget to start keeping an E journal so that you can find out what your triggers are.......

[moonchild1970]

No I donot drive. That was the first thing I gave up on asking the ER about it.

When we go, we either go with hubby or take a bus. A cane is ok- but when I am staggering all over the place or weaving, it is more a hazard as I actually trip over it.

Though that part may be the Fibromyalgia though.

Was diagnoed already in ER and by another dr. But my EEG is on the 31st of this month. neurologist appt is in two weeks so I will know more then.

Thank goodness husband saw the seizure and has seen several more since then. Plus me showing them my bitten tongue, bruises-etc. An they did CT and bloodworrk-etc.

Triggers for me are being over tired, and blood sugar/hypoglycemia attacks I know that for sure....

[Meetz1064]

another partner in the Fibromyalgia family. There are a few of us here, too, I believe. Mine is not quite so bad right now....the weather's been warm, so I've been able to deal. But even right now I'm wrapped up in flannel jammies, and a shepherd's wool, THICK blanket. Sheperd's wool slippers will go on soon.

I wish you luck with the seizure control....you might really want to look into some of the diets, though. They really CAN help...and an E journal is a GREAT thing......

[moonchild1970]

Thanks I will do that and yes,thank goodness for the warm weather. It is a Fibro victim's best friend.

[RobinN]

One of Rebecca's dear friends has fibromyalgia and she has been helped tremendously by going on a gluten free diet.

Meetz yours might also be improved due to the change in your nutritional choices.

[moonchild1970]

Thanks, I will definitely look into that!