My niece keeps passing out

I wish I knew.  But the part about being confused sounds like it might be a seizure. 

Uhura

Thanks so much for that Jen. I will keep you informed. x

Sounds like you are describing atonic "drop attack" seizures.  But it could also be narcolepsy.  I'm glad that tests are going to be done to find out for sure.

I've always heard of catamenial epilepsy manifesting in the form of tonic-clonic (grand mal) seizures.  But epilepsy really doesn't fit in a box, so who knows?

Post Edited By Moderator (Admin) : 3/2/2006 9:23:10 AM (GMT-7)

Well we are making some progress. The EEG will be on Monday and the MRI scan on Thursday. Then we play the waiting game again for the results......

My niece passed out three times on Monday and four times on Tuesday. My sister has kept her home from school yesterday and today. During this time she has only fainted once. It does seem that when she is resting and relaxed at home she has fewer. She is, however, extremely bored and fed up! Apart from a sligh headache, she does not feel ill. Will keep you informed.

Mandi, I'm the exact opposite. MRIs are no problem as long as I remember not to wear metal. I hate the gowns! I just lay there doing nothing. My only complaint about them is that they're boring.

EEGs scare me to death. For me it means laying there on a bed, expected to sleep. I can't sleep on my back. Then there is the part where they either do an EKG or put the things on the shoulder, I've never figured out how they decide which way to measure what your heart is doing. But I hate that.

Then there is the strobe lights. I won't let them use them on me anymore. I seize the entire time. I know I'm seizing. I'm struggling not to wet my pants. I can't hear anything. Just one long tonic clonic seizure, which would be status except that it is induced medically. The one time I didn't seize (I don't remember what medicine I was taking at the time) I had the worst headache imaginable afterward. EEGs knock me out for a couple of days if they use strobe lights. They won't let me keep my hair back anyways, all barrettes and things have to be taken out.

Uhura

Bless you Mandi. Well, the EEG on Monday went ok and at the MRI, she was amazing - extremely calm and confident, very matter of fact. (My sister was a wreck!). We now await the results.

The faints are still coming often and regularly - vary between one and five times a day. She has been going into school just for half a day as she is so depressed being at home and the school are very helpful and supportive. Unfortunately today she fainted halfway down a flight of stairs and fell the rest of the way. When she came round she complained that she had hurt her neck, so an ambulance was called. My sister just called from A & E to say that they have done a whole lot of other tests and are waiting for clearance to come home.

My niece gets no warning of these faints. She describes them as "like falling into a black hole". The other day she fainted while she was eating an apple. When she came round, she still had the half chewed apple in her mouth.

Hopefully next week we shall get the results - it is just horrible not knowing. Your imagination works overtime doesn't it? Thank you so much for your care, concern and support.

Well, as you predicted Mandi, the EEG result has come back "clear" so that means she doesn't have epilepsy.... or does it?

We have a diagnosis! The MRI scan showed up a condition called Arnold Chiari malformation. It is an abnormality where the brain and spinal cord meet. My niece would have been born with it but it has only become a problem as she has grown. If you Google it, there are quite a few sites dealing with it. None of our family has ever heard of it before.

The consultant is saying that he doesn't think surgery will be required and that he is happy for her to go back to school (fainting three or four times a day?!). He is sending a copy of the scan to Great Ormond Street Hospital for Children in London for a second opinion and my sister will have an appointment with the consultant on Saturday when she will be asking lots of questions.

I am relieved we know what is causing the faints, but this has opened up a whole new can of worms! Anyway thanks to you all, particularly Mandi, for your help and support.

Just bumping this to the top for Lyn Howlyncat to read. x