advice please :oS

[angie2312]

Hi all

I just wondered if anyone can tell me whats happening to me ......

I am awaiting diagnosis with a neurologist as they think i may be affected by simple partial seizures ... I have noticed of late that the way these make me feel is changing a little . Apart from the fact of late they have been stronger than ever before - I now feel like i am grinning like a cheshire cat whilst in the middle of one ( am yet to find out if i actually am doing this or whether it just feels like that ) and I feel exhausted and shattered after these episodes like never before . But this week ... nearly every day... several times a day , I have had the feeling that I am about to have one of my episodes and prepare myself for it and then it stops - I have never known this before . So today I felt it building up .... and got complacent that it was about to stop again ( very stupid of me ) BUT this time it didnt stop and it was the worst one of these episodes that i have ever felt -and went on for quite a while and i had to steady myself as I thought i was going to drop on the floor .

So what i was wondering is ....... does anyone else have the feeling they are about to have a seizure but then it stops again ??? Does this mean I am always going to have a bad one if i get these again ??? I am very naive about all this and would appreciate any advice anyone can give and i am sorry for my non technical terms but am not really sure how to describe these feelings

Thanks in advance

 

[Nakamova]

Hi --

I've had a warning sensations, and then later had the actual seizure. Sort of like feeling you're about to sneeze, and then not, and then sneezing an hour later. It's not clear whether the small warnings mean that a big seizure is already on the horizon and inevitable, or if there really is a way to stop a big one from happening by being vigilant. I think that it's different for different people. Unfortunately, the only way to be sure if your seizures are following a certain pattern is to have it happen again.

It does sound as if your seizures are escalating. The more you seize, the more your brain gets in the habit of it., so I hope that your neurologist gets back to you soon, and can prescribe medication/treatment that will help.

Best,
Nakamova

 

[angie2312]

Thank you so much !!!! Your advice is invaluable and i appreciate you taking the time to reply

You said what i was thinking too - the nature of them seems to be changing everytime and concerns me lots . Unfortunatly the whole appointment system with the neurologist seems to take forever . I saw him in April and he sent me for lots of tests which i have had and am still not seeing him until the 28th August - it takes forever

I am most frustrated but August 28th is not too far away ............. hmmm )

 

[darcness]

It sounds like your having some sort of aura, which in most cases is an actual seizure itself. Usually if it doesn't progress (breakthrough as it's called) then the feeling will pass and you'll be ok. But when you have a breakthrough, which is when it progresses farther, then you have your usual seizure.

My wife went through some strange things when she first started on her meds that I thought were seizures. Apparently they were side effects though because they don't happen anymore. She never had any aura's or warnings that her seizures were coming though.

 

[Melpier]

I have always had warnings but several years ago I started having them with out the Physical Seizures. I have learned to always be on guard. frusterating? yes but its better then the let down of having an actual seizure. as far as your neurologist goes I would walk in or at least try to get in sooner.Sometimes you have to be a little Pushy. This is your life it's effecting. Keep Pushing onward. and never give up.

 

[Bernard]

... does anyone else have the feeling they are about to have a seizure but then it stops again ??? Does this mean I am always going to have a bad one if i get these again ???

There are a bunch of neurobehavioral techniques that you can try using to "short circuit" an imminent seizure if you are one of the fortunate people who recognizes/receives warning signs.

I'd recommend reading [ame]http://www.amazon.com/exec/obidos/redirect?tag=projectmana0a-20&path=tg/detail/-/0802774652/ref=ase_projectmana0a-20?v=glance&s=books[/ame] and see if the techniques described in the book help.

 

[drarvindr]

Your feeling of impending seizure is most likely an aura , which is a simple partial in itself. What exactly happens ? some people have deja vu , some hear weird sounds , some smell something funny , some feel a tingling in their hands / feet ... the list is endless. If you have realised that these feelings are followed by seizures , you can take the measures bernard has suggested , especially if your next neuo consult is weeks away. have you been given any medication as yet ?

 

[angie2312]

Hi

Well my normal feeling is ....almost a feeling of excitement first followed by a STRONG feeling of Deja Vu - metalic taste in my mouth - warm feeling inside - shaky and although i am aware of whats happening i dont feel very with it at all and if its a really bad one i feel like i am grinning from ear to ear - not sure if I am though or it just feels that way .

But just lately I have been having that excited feeling .... followed like the beginnings of my Deja Vu feeling ......... and then nothing - it all just stops and i feel fine again . That was until the other day .

I have these for weeks and then nothing for a while and then they start again - and it feelis like everytime they start up again there is something new ... or different about them . Does this mean they are getting worse - I am very confused by them lately

No I have not been given meds yet as the neurologist wanted to do tests - I have had an EEG , ECG and MRI done so far . He said my symptoms are very text book .... Whatever that might mean

Thank you EVERYONE for your invaluable advice - I would be lost if I couldnt come on here and ask advice as I dont know anyone else who knows anything about what is happening to me and my family are finding the whole epilepsy thing very frightening and they refuse to talk about it - SO A HUGE THANK YOU TO YOU ALL - YOUR ALL FANTASTIC !!!! xxxx