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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: TLE Newbie! *WAVES MADLY*

Submitted by Bloodyrose on Wed, 2006-09-06 - 11:30
Hi Cat! Thank you for the warm welcome - it is much appreciated. I'm hoping that you find the control over your epilepsy you're looking for. *hugs*

Re: Re: TLE Newbie! *WAVES MADLY*

Submitted by Bloodyrose on Wed, 2006-09-06 - 11:29
Hi Andy! Thank you so much for taking the time to reply. So far I am having a great time here - everyone is so friendly! I made my appointment with the epilepsy nurse today, but unfortunately she can't see me for a month. I'm debating holding out until then, but it's more likely I will make an appointment with my G.P in the meantime. I'm glad you have a good story about finding a knowledgeable doctor - it gives me hope that someone is going to have some sort of idea what I'm going on about at some point, even if it takes a while. Thank you for the well-wishes.:D

Re: TLE Newbie! *WAVES MADLY*

Submitted by scorpio on Wed, 2006-09-06 - 08:31
Dear old NHS! Sounds from what you say that you were diagnosed by your GP, seen by the nearest consultant who then put you on Sodium Valproate, and that was that, apart from the dosage being increased, of course. If you have not discovered already, access to specialist treatment for epi in the UK is a bit of a postcode lottery and waiting lists also tend to be quite long – unless you go private (as likely as not, you will see the same person anyway). Some parts of the country are better served than others: the Charing Cross Hospital in London, for instance, has a large number of doctors in its neurology department who spend most of their time dealing with epilepsy; likewise the Park Hospital in Oxford. Other areas are not so well covered. Sodium Valproate must be the oldest AED in the book. As such, it tends to be used as a ‘frontline’ drug, to which others are added or replace. There are plenty of alternatives, if you have not discovered already, some better for certain types of epi than others, but whose efficacy and side-effects can vary a lot from one individual to another, both persons with the same type of epi. Drugs, too, are a bit of a lottery. I hope you find an AED, or other means of controlling the epi, that suits you - sooner rather than later. Chris

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