Seizures

Posted , 5 users are following.

I was diagnosed with Epilepsy 14 years ago as I had absences.  I never passed out and always felt that I didnt really have anything wrong with me.   I was prescribed tegretol retard and for the past 8 years I have been symptom free.  However last week I passed out came to feeling really confused horrible feeling. Went to hospital had loads tests everything came back negative for any cause. And I was not offered a follow up.  Doctor kept saying are you sure you didn't just fall asleep.  Most Annoying I felt like she didn't believe me.   10 days later I collapsed while having lunch at a hotel. So back to hospital again.  Different Doctor who was a lot more thorough and as I had someone with me who could describe what had happened.  I am now waiting to see a neurologist.  Could anyone advise me of what tests are likely to be done. And what are averag waiting time for appointment?

1 like, 7 replies

7 Replies

  • Posted

    having so much just resettin my pass word , nearly gave up ,lol now elizabeth 186 ,i dont know what part of the world your living ,but im in qld australia , the proceedure here is you see a doc. he will refer you to a specialist , a neroligist , he will send you fo an EEG , that will show him if and what is the problem , its painless ,takes about an hour , ,no problem there .then the spesialist will tell the doc what medication , my self i have had so many side affects from what my first doc prescribed that they agreed with me not to take anything , but now i have a break through with a new doc , im on a different medication and so far since 15 may 2015 , i havent had a turn , so dont give up ,change your doc. or ask for an eeg , to confirm the problem , remember doctors are just educated men and women ,not god , lol good luck , 
    • Posted

      Have now got an appointment for 31st August to see neurologist. Will be glad to get it past.  I have anxiety a lot now afraid of taking another seizure
  • Posted

    elizabeth ,you will be ok , but try not to stress out ,it only makes it worse , just wait to see and hear what the doc says , also tell him how you feel too , i tell my doc every thing , and they do try to help i asure you , i know its a horrible feeling ,and very hard to explain in words , and just hope you get the medication that can controll it hey , keep your chin up and keep in touch with people that care xx
  • Posted

    hi elizebeth, 

    sounds like you have quite a bit on your plate. i have epilepsy and see nuroligists reguarly... just a few tips to keep in mind:there gona leave most things up to you. its all about how you feel going on to medications, having tests ect. as long as your safe their happy to leave things as they are. but if you wanna improve the quality of your life then fight with them. even exaggerate if need be. You can do as many EEGs as it takes to get results. dont give up. and like old naana said remember drs aint God ...pray. and well all pray for oyu. keep us posted.

    take care

    Sarah 

  • Posted

    hi elizabeth.. hope you got my note on jason's thread ..was in there last night (joined site yesterday) - had already 'bookmarked' your thread here so was knocked out to see your reply to him ..just way too late last night to start a reply.  thought your reply to jason great, btw ..and to the fella john, too - curious one, that!

    anyway.. your appointment ..how did it go?  the replies you've had all look pretty sound; sure fits with my experiences.  (maybe not the eeg - i've only had mri's and latterly ct scans ..in part i think because my seizures stem from a traumatic brain injury plus they've also been dealing with other damage).

    i think you'll find variations depending on where you are and which particular "god" ..erm, sorry - consultant - you see.. they all seem to have their little 'ways' but tegretol (hiddeous stuff) seems to be the 'catch all' starter drug.  i remember being rather surprised when they said at the outset "you have to understand we don't really know what we're doing".  since then it's been 10 years of "suck it and see" - every now and then upping the meds because they haven't dented the seizures or changing pills.  i first reported issues in '88 but didn't agree to meds till '95 ..by that time not much choice although i so hanker for the days pre-med sometimes.

    it sounds to me as though you've been having 'simple partial seizures' up till now although your recent episodes sound rather like 'complex partial seizures' (that's what i have) but i'm sure they'll have spoken to you about this.

    without hearing how it went it's probably not helpful to keep speculating - hopefully it's all rather clearer for you although you may not yet have had results back if you had an mri. - to be honest, i found the whole affair massively underwhelming - they don't 'wade in' ..just do most of it all by questioning and discussing - amazing what you don't know you know ..they're trained to uncover it.

    one thing to bear in mind tho.. don't know about you but i was dreading them saying "sorry, mate - can't find anything wrong".. well, in my case they found it all right and in a weird kind of way it was a blessed relief to finally "name the beast", but do hold on to the fact that a large percentage of people don't show any signs on the mri ..what my lot impressed on me though was that even when they can't spot an obvious issue, that absolutely doesn't mean you don't have epilepsy.  classic case of 'abscence of evidence is NOT evidence of absence'!!   yup, the brain's a funny animal - cantankerous and marvellous all at the same time.  apparently as many neurons in there as grains of sand on all the beaches in all the world.  must try counting them sometime!  confused

    enough for now.. i hope recent events have allowed you to see a path ahead more clearly and you have support around you as you move forward.   for now, do please try and let us know how you're progressing, what questions have come up (yes, at the appointment but likely many more have struck you after the event)..  especially how you're feeling about it all.

    fingers crossed your news was positive, even if it wasn't what you were hoping for elizabeth.   it doesn't change anything except that now perhaps you have a clearer idea of what you're facing..

    all my very best wishes and bye for now.

    ps. i'm in uk, so pure 'nhs' throughout.

  • Posted

    Epilepsy runs in our family. My mother and grandfather have it. My mother normally has a seizure after 3-4 years. And my grandfather probably just had one or two and never again. I was the one who used to show signs of it like sudden startle movements made me shoot something out of my hand across the room. But, yesterday my brother had a fit. He had a bad case of fever just before yesterday for about 2-3 days and had been taking antibiotics. His exams are near and he is a pretty good A+ student so naturally he was stressed out of his mind because of that as well. 

    Just before having the seizure he came to me and told that he could not concentrate because his eyeballs kept moving suddenly. I didn't even give it a second thought and told him to go rest. And just an hour later I heard him fall. 

    It scared me and everyone too much. 

    Is there a chance that it was only a fever or stress induced seizure and that he would not have epilepsy? 

    I noticed something else too. His reaction to it was much better then my mother. Probably after 20 min, he was smiling and asking if everything is okay, while my mother doesn't recover for quite some time after her seizure. His body temperature remained normal, while my mother's feet and hands get cold. 

    Please tell me he won't have it again.

    Also, he is 17.

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