"New" to the forum, "old" to epilepsy..

VanessaDP

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I have been suffering from Gran Mal seizures and was diagnosed with Epilepsy in 2000. I am now 37yrs old and only recently have my seizures started to increase...My partner will find me in a state after I had, what they call night tremors. Why am I getting these? Does my meds need to increase?? I'm terrified cause I never know When I'm going to have a Gran Mal (like I did on Friday past! Out of the blue, I had the "gzzzzk" aura in head like I get before seizures, and have been tired...but its days later now...and my skin is still so itchy, I wanna go mad. Stitching pains in my head on left and back side and pains in joints. I have tremors and don't want to go to our GP if all this is normal. Please giVe me your expert advice. Don't think ppl understand the fear I have - only epileptics can know that fear.
 

SlimBlue

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Hi Vanessa, welcome to CWE :)

My seizures changed/increased last year, after 15 years of being the same and me being on the same meds/dose.

I was sh*t scared to be honest so I can understand what you're going through- not only more seizures, but weird after-effects carrying on much longer than usual. It's normal to have spasms/tremors after a grand mal, but it does sound like you need to see your GP asap.

My changes were all caused by needing to increace my Lamacital slightly, and eventually were stabilized. It's wrong to have to live in fear, and will only make things worse at the end of the day.

Get checked out by the docs- that's what they're there for...
:hugs:
 
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VanessaDP

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Thank You SlimBlue! Its frightening cause I am told that I have simple partial seizures and all I KNOW is that I feel emotionally and physically exhausted. And although I have a wonderful partner and loving support at home, there is SO much discrimination against epileptics in SA. Some cultures, and we have SO many within the borders..but they believe you are posessed by demons when you have seizures. Or other ppl will think you are just lazy. Its days now since I had the Gran mal/Tonic clonic and I feel dizzy, tearful, tired, tingling pains, joint aches, bad BAD headaches...and the list goes on. I have never felt this "beaten" by epilepsy in Years. This one, just knocKed me on my @rse. Thank you, iTs good to know what I'm. Experiencing is "NorMal".
 

SlimBlue

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It must hard to fight agaist so much discrimination :( It's got a lot better in the UK, but it's still not great- there are still lots of missperceptions.

It's weird when one comes out the blue like this, but with it being a few days after now- I'd definitely make sure you let your GP know what's happened. Try and record all the info you can, about the effects, how long they've lasted, dates and times of other seizures etc Basically anything you think might help them make a diagnosis sooner :)
 

pccoder

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Sorry Vanessa. I know how you feel. I, too, have started having seizures out of the blue after many years with none. It is very frustrating, and I feel for you.
 

VanessaDP

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Thank you Pccoder and SlimBlue. I had another grand mal yesterday afternoon - didn't last too long though. I have had many simple partial seizures which are out of the ordinary. Its a huge concern for both me and my partner. I suspect that my meds have to increase, and my OLD GP, I had many years ago - would evaluate me and adapt dose and I'd be okay. The new area I live now and new GP - well, he's a good GP...but with anything other than a common cold etc - he wants to refer to a specialist. That costs a lot of money. Medical aid was exhausted pretty quick last year and I was in hospital 5x !!!
Its just crappy cause with epilepsy, you don't want to play with your life. What if the next seizure is "the BIG one" and u don't wake up? So many scary scenarios. I'm glad to know there's ppl out there That feel the sAme way I do. Terrified. I had few smaller seizures today and been sleeping most of the day. Head is SO sore. Do you sometimes get a bad smell..? No one else smells anything but I will smell some foul odor, and then I'll fit. Or I get itchy like crazy...?? This is all new to me and I never had the itches or bad smells before. Why am I getting them now? And why am I having all these little simple partial seizures?! Thank you for the support *hug*
 

pccoder

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I don't know why you're getting the bad smells or the itching, but I'm guessing if we knew the answer we'd be able to conquer this dreaded disease. I'm having so many simple partials too though. And, I didn't used to in the past, as recently as 7 months ago. It all just began out of nowhere and elevated and got worse and worse until I had 3 grand mals myself at the end of last year.
 

VanessaDP

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Sorry to hear about your Grand mals as well as the simple partials. I just heard that my gf made an appt with our GP for me on Sat morning. I have heard that some ppl get strange smells as pre seisure auras. Or other ppl experience itching after seizures. I just want to be able to walk around again and live "normal" without fear of falling. And you knw as well as I do - when we fall whilst standing - .... Its like a tree falling!! I have had BAD falls in the past and hopefully the doc will hAve some sollutions on Sat. Hope u r ok and no more seizures. Talking to ppl that experience the same shite helps a LOT!! Thank you all.
 

pccoder

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Talking to ppl that experience the same shite helps a LOT!! Thank you all.
It sure does. I have just had 2 simple partials within the last 30 minutes. It is so easy to know when it happens as long as I'm on the computer (or talking to someone) because I go brain-dead halfway through my sentence or in the middle of what I'm reading. Then I have to give it a good 20-30 seconds to pass before what I'm looking at makes any sense. :(
 

Belinda5000

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Vanessa,I've suffered from epilepsy 50 years and the seizures can change at anytime.You can also get headaches like crazy have you ever fallen down hit your head?Not everyone is controlled I'm not and I've ended having a GM tonic-clonic or Complex partial plenty of times around idiots who make big deal of it. But that's life.
 

MAB

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Sorry to hear about your Grand mals as well as the simple partials. I just heard that my gf made an appt with our GP for me on Sat morning. I have heard that some ppl get strange smells as pre seisure auras. Or other ppl experience itching after seizures. I just want to be able to walk around again and live "normal" without fear of falling. And you knw as well as I do - when we fall whilst standing - .... Its like a tree falling!! I have had BAD falls in the past and hopefully the doc will hAve some sollutions on Sat. Hope u r ok and no more seizures. Talking to ppl that experience the same shite helps a LOT!! Thank you all.
Actually the bad smells are partial seizurers that can be a warning proceeding a different type of seizure.

Thankfully I've never fallen due to a seizure but I have fainted a few times from low blood pressure. That feels bad enough, especially when you jam a paint brush in your eye when you hit the floor. I hope your doctor has some help for you.
 

VanessaDP

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Thank you all!! I am learning so much from all your replies!! Sincere thanks. I had few simple partials this morniNg and plenty times before have I gotten what I just always called "brain freeze"...where all of a sudden I go BLANK!!!! And either someone has to remind me what I was saying..or sometimes the train of thought is just lost?!.. Is that in other words also a type of seizure?? Damn, I never knew. SA really needs to educate us epileptics better on the disability and what to expect...to be prepared. I used to be quite smart and couldn't understand why I would just get "brain freeze" at times...but now it seems that it's just a mild seizure?! Thank you for all the help.
 
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