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TLE Newbie! *WAVES MADLY*

Mon, 09/04/2006 - 15:35
Hey guys! Stumbled across this site and have been mooching around taking it all in. I love the community forum - everyone seems so friendly. So I thought I would jump on in and say hello. My name is Rachael and I'm from the U.K. I'm 24 years old and I was diagnosed with epilepsy when I was 15, although as we know now, I had been having Simple Partial Seizures since I was about four years old. My mother took me to the doctor numerous times, and was simply told I was attention seeking! As with many of you, I was first diagnosed when I had my first TCS. Since then, I have had maybe 6 or 7 more TCS, frequent SPS, and a fair number of CPS, not all of which lead to TCS, thankfully. I suppose my reason for posting right now, is because lately I've had a lot of stress, very little sleep, and have been very premenstrual, all of which have contributed to a higher instance of SMS than usual. I suppose I should also point out that I am not on medication currently, by choice. The reason for this is that when I was first diagnosed, I was put on Sodium Valproate, which was upped in dose with each TCS until I was on the maximum dose (and taking 12 tablets a day!). The side effects were intolerable to me, and didn't stop the TCS (which back then were the only type I was aware of). However, knowing now what I know, I am wondering if I should go back to my doc and demand to be seen by someone more specialized, and be put on a new medication. The knowledge that there is apparently a link with increased memory loss (mine is bad enough as it is through my seizures) if one doesn't take medication to control SPS and CPS is spurring me on to perhaps do this. All input welcome, and I'm happy to meet you all. :D

Comments

Re: Re: Re: Re: TLE Newbie! *WAVES MADLY*

Submitted by Bloodyrose on Tue, 2006-09-05 - 09:23
Hey! What a lovely welcome, thank you. It must be hard seeing your son go through that - I've always thought the people watching the one having seizures is harder than having them. Good luck with controlling your son's epilepsy - I'm calling the doctor tomorrow so hopefully I will have an appointment soon. *hugs*

Re: TLE Newbie! *WAVES MADLY*

Submitted by andy m on Tue, 2006-09-05 - 19:00
Hi Rachael, Always nice to have another UK member on board. I joined what is a predominantly US membership site but have found nothing but support and friendship from all corners of the earth. I actually take Epilim along with Keppra and Clobazam but it was starting on Keppra that has lead to over 3 years being seizure free. I understand only too well the feeling that no matter what med you are taking you keep up ending face down on the pavement and several times over the last 25 years that I have taken meds (I was officially diagnosed at 15, although I have had Epilepsy in one form or another for 40 years) I have stopped taking them altogether with the inevitable results. I was lucky that in the end I got a good specialist, one of the best in the field in the UK after years of clueless G.P.s and equally inept ''specialists'', but that's the NHS for you, hit and miss at the best of times. I wish you good luck in finding a specialist, if you get someone that is prepared to actually listen to you that's half the battle. I'll finish by saying welcome again and you really have come to the right place. Andy

Re: Re: TLE Newbie! *WAVES MADLY*

Submitted by happycat2 on Tue, 2006-09-05 - 20:38
Hi Rachael and welcome. I'm glad that you put in a call to your doctor. A friend once said to mein 2003 when I was having med problems with tegretol to call my doctor. She listened and said if he thinks you need to up the med, then he will, that's his job, what he is there for. I really appreciated that. For when I did in December 2003 my tegretol level was a a little high.....14.8 ... doctor wanted me to change my dose but until I talked to my neuro, I refused. I asked them to fax the results to my neuro, and found they won't without my signature and that means a trip to the neuro. It took a couple of years to find out what was going on. Tegretol was the cause. The dose was to high, and lab results of the level in my blood explained the bruising I had been having. I think what I did was to take my night meds really late as I stay up late....then take my morning meds when I get up with the kids...so were probably too close, so now I am trying to take my night meds earlier....this could solve the problem. As Andy says ...I wish you good luck in finding a specialist, if you get someone that is prepared to actually listen to you that's half the battle. I hope that you solve your problem, you,as I did find one that listens as my friend did and you come back and update us. Hang in there. Cat. "Many false prophets are gone out into the world." 1 John 4:1

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