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hi from manchster england

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1 hi from manchster england on Thu Dec 03, 2009 8:19 am

curtisdon1


i have recently been diagnosed with temporal lobe epilepsy after about
4 years of strange episodes and to be hoest im relieved the docs have
finally foun out what was wrong with me,
ive never had a full blown seizure but these strange uncontrolable
feelings i have which can happen daily where really getting me down
when i didnt know what was wrog with me, sometimes i felt so weird and
out of place i wanted to just die so they would stop, ive been on
medication now for about a month and i feel slightly better but i did
expect the meds to do alot more,
anyway enough babblein just thought id say hi and would really like to
ear from people with temporal lobe epilepsy and compare storys

2 Re: hi from manchster england on Thu Dec 03, 2009 3:23 pm

TJW

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Admin
Welcome to TESG, I hope you find all the info and as much support as you need Smile

I have temporal lobe epilepsy too, and frontal lobe abnormalities.

Feel free to ask any questions you want, I'm pretty much an open book Very Happy

Best Wishes,
Tania x

http://www.TheEpilepsySupportGroup.com

3 Re: hi from manchster england on Thu Dec 03, 2009 3:55 pm

sophie

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Hi and welcome

it might take a while before they find the right dosage or meds.

take care
Sophie

4 Re: hi from manchster england on Thu Dec 03, 2009 10:53 pm

curtisdon1


Thanx for the relpys, I'm currently takeing orlept 200mg 2 tablets twice a day,i know people have different experiences when they have a temporal lobe siezure but could you give me a little insight to what happens to you when you have a siezure? I start with a funny feeling in my stomach then all I can hear is background noise of people talking which is really disturbing to me, then I feel detached like I'm in some sort of dream it's so strange I find it hard to describe, freinds have seen this happen and say I just look really vacant like I'm not there

5 Re: hi from manchster england on Fri Dec 04, 2009 9:41 am

TJW

avatar
Admin
To be honest since starting Keppra I no longer remember anything that happens but others say I look like I'm daydreaming, then my head turns to the right as I stiffen up and fall before starting to convulse. I sometimes bite my tongue or have nosebleeds, and afterwards I sometimes wander for a couple of minutes before sleeping it off for an hour or so.

Before starting Keppra I used to get warnings before hand which included a searing heat rising from my belly and coming up over my head. Also the distinct smell of banana which would gradually turn into a singed burning smell.

I have a pulse watch that gives me a warning now, it picks up a racing pulse and beeps which gives me about 5 mins warning that a seizure is on the way. Unfortunately I can't use it at the moment as I'm pregnant and it keeps picking up the baby's heartbeat which is much higher than mine. As soon as she's born though I will go back to using it as it helps keep me safe and I can ensure the baby is safe in her cot before a seizure hits.

http://www.TheEpilepsySupportGroup.com

6 Re: hi from manchster england on Fri Dec 04, 2009 11:39 am

curtisdon1


Wow iv never had a seizure like that Iv only had smaller partial seizures, is that what I have to look forward to

7 Re: hi from manchster england on Fri Dec 04, 2009 12:29 pm

sophie

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Hi Curtisdon1
I'm not a expert but from what i've been told even if you have the same type of E you might not have the same seizure if that make sense, Tania will tell you if i'm right
take care
Sophiex

8 Re: hi from manchster england on Fri Dec 04, 2009 1:13 pm

curtisdon1


Thanx for the info sophie, I could really do with finding out more about the kind of epilepsy I have, also has any1 else been prescribed orlept

9 Re: hi from manchster england on Fri Dec 04, 2009 1:48 pm

TJW

avatar
Admin
Here is a link to the info I currently have on TLE (the link goes to our original website, I am still moving everything over) Temporal Lobe Epilepsy Info

And here is a link to the on site info about Orlept (it's a medication known by many names including epilim, sodium valproate, etc) Orlept

Sophie is correct in saying that you can have the same type of epilepsy and have different symptoms. The reason for this is that the type of epilepsy is classed as the area it begins in. In both of our cases this is the Temporal lobe of the brain. However, in your case this is localised to that one particular area, whereas with mine it carries on to spread to the rest of the brain which then causes a complete brain seizure such as the tonic clonic scenario I described.

Also within each lobe there are multiple areas that can be affected by the neuronal activity of a seizure, as well as the varying degrees to which the neuronal activity occurs, research is far from complete on these subjects so very little is truly known other than the fact that the epileptic experiences of one person will never be exactly the same as that of another.

Hope that helps Smile

http://www.TheEpilepsySupportGroup.com

10 Re: hi from manchster england on Fri Dec 04, 2009 2:21 pm

curtisdon1


Your a great help tania thanx alot, The info in the last post has taught me more about temporal lobe epilepsy than my doctor has, all my doc said was "you have temporal lobe epilepsy here's some orlept come back and see me in january" which wasn't very helpfull I would of liked to know a bit more about the condition really, as for the orlept as I said before it doesn't really seem to be doing that much although I think it is helping, is there better medication for this condition I could maybe ask the doctors to pit me on

and thanx again tania you have been a great help

11 Re: hi from manchster england on Sat Dec 05, 2009 8:04 am

TJW

avatar
Admin
That's the kind of reaction I got too, after 10 months of them trying to convince me it was all in my head. That's why I set up the website. There are so many people who are not given any information about their condition and just left to get on with it. I am hoping to become an epileptologist for my area, eventually, but it takes many years of studying and examinations. I wanted to help people before that, too. Comes naturally I guess as I was a carer for 14yrs.

TBH you haven't been on the Orlept long enough to switch to something else. You say it seems to be helping a little. Usually they start you off at a low dose and then gradually increase it as they see the effects of the medication on your seizures. I recommend keeping a seizure diary to track your episodes, this will accurately depict any patterns and may prompt recognition of any triggering factors. Between these and medication dosages there is a very good chance of gaining seizure control.

Best Wishes,
Tania x

http://www.TheEpilepsySupportGroup.com

12 Re: hi from manchster england on Sat Dec 05, 2009 8:43 am

curtisdon1


God I hope I can get them under control, I had a really bad episode on the alter at my sons christening it was horrible I started hearing an seeing some really strange things and it was a struggle to act normal, it was this that made me really start hassleing my doctor to get some answers to what was wrong with me, there should be more people like you about because to be honest you seem to know more about my condition than my doctor does

13 Re: hi from manchster england on Tue Dec 08, 2009 10:21 am

TJW

avatar
Admin
Thank you for your kind words x

http://www.TheEpilepsySupportGroup.com

14 Re: hi from manchster england on Mon Jan 04, 2010 1:55 pm

JulieC


Hi welcome to the forum, take care luv Juliexx

15 Re: hi from manchster england on Sun Jan 10, 2010 4:58 am

curtisdon1


Well I'm back at the hospital next Friday (13th January) to see how I'm getting on with my medication and to see if it has had any positive effects on my epilepsy, an to be quite honest I thought the medication was doing something at 1st but I don't know if it was in my head cause I wanted it to work so much, what medication do other people take for temporal lobe epilepsy which has controlled there sezuires succesfully? Thanks for any help guys

16 Re: hi from manchster england on Sun Jan 10, 2010 5:47 am

sophie

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How long have you been on the meds now?

Sophie xx

17 Re: hi from manchster england on Sun Jan 10, 2010 6:30 am

curtisdon1


Been on them about 3 months now

18 Re: hi from manchster england on Sun Jan 10, 2010 8:07 am

sophie

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That's good

Stay positive, don't be alarm if you start at some point to get some little fits back but do contact your GP you might just need to increase your meds. It might not happen that's just me talking about what happen to my daughter which has unusal benign partial and every body is different well each E is even if you have the same type that somebody it won't necessary affect you the same way.For your appointment next week i would recommend that you take with you a list of question if you have any and also your dairy where you kept note of everything if you do have one, if you haven't something to think about for the future i found this very helpful ( so i don't miss anything out).
Sophie xx

19 Re: hi from manchster england on Sun Jan 10, 2010 8:28 am

curtisdon1


Thanx for the advice sophie, I really hope they do increase the dose of my meds or even change them altogether, I don't know if it's anything to do with the meds but in the last month my short term memory has been extremely bad

20 Re: hi from manchster england on Sun Jan 10, 2010 8:49 am

sophie

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I've just look at orlep and just notice it's Valproic acid which that's want my daughter take hers is episenta she 3 and take 300mg of it a day plus 100mg of lamotrigine. In my opinion it does effect her short term memory among other thing. It might be too soon to change them but might increase them or add a other one.
Have you had any other side effects?
And did they do a blood test before they started the treatment and do you if they will do one has a check up? ( they didn't do one for Anais before she started it but read you should be monitor the first 6 months for kidney, liver) is it the same for orlep?
Sophie

21 Re: hi from manchster england on Sun Jan 10, 2010 10:10 am

curtisdon1


Yes they did do a blood test before I started them and will do one on friday, the only other side effects I had was I used to get terrible migranes for about the 1st 2 weeks I started the meds,

22 Re: hi from manchster england on Sun Jan 10, 2010 11:40 am

sophie

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Thanks for that i need to contact them tomorrow and find out for Anais what is happening. if i don't speak to you before your appointment good luck and let me know how it went.
Take care
Sophie xx

23 Re: hi from manchster england on Sun Jan 10, 2010 12:18 pm

curtisdon1


Thanx alot sophie, hope everything works out for your daughter

24 Re: hi from manchster england on Mon Jan 18, 2010 9:07 am

sophie

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Hi Curtisdon1

hope you ok? how did your appointment went?

Sophie xx

25 Re: hi from manchster england on Mon Jan 18, 2010 10:14 am

curtisdon1


Hi Sophie
they took my blood and I'm waiting for the results now, the doc says he may need to put me on a higher doseage if the episodes keep happening, so I'm playing the waiting game now, just hope he calls me soon with results

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