New to epilepsy

[Gareth]

Hi all, my name is Gareth and I live near Manchester uk, around 2 months ago I was diagnosed with temporal lobe epilepsy I have had a EEG & ECG done and have a MRI scan next week.

Since I have been diagnosed epilepsy I have had my driving licence taken off me which I am so gutted and annoyed about however I understand for safety reasons.

All my family and partner have been great however they can only help so much as they don't understand how I feel inside

I am currently taking Lamotrigine (50mg in morning and 100mg at night) and when I first started taking it I have a couple of side affects, now I had am my maximum dosage what the neurologist advised

The side affects I am having is I feel really sleepy and tired after a couple of hours of taking the tablet which I am nearly falling asleep at my desk and have drifted off once or twice (put my head in my hands so no one which see my eyes shut) I'm not sure if this is related but I am fine one minute then I feel angry and want to start kicking off (never been in a fight before) and after I calm down I want to cry and sometimes I do (all I think about is not being able to drive my beloved car which I loved driving and being alone when I want to think) then I feel really bad which then makes me angry then start to cry

I am kinda worried about the mri scan as I have never had one before.

I am wondering if anyone could give me some advise as I feel so down at the moment

 

[George__]

Those side effects will probably not be that bad in a few months, it's probably due to the increased dosage. My side effects also went up when they doubled my dosage of Keppra but after 2 months the side effects arne't as "pronounced." But if they continue to bother you talk to a doctor about switching medication!

Probably good idea to learn about what triggers you seizures and finding generic advice on what can reduce someone's seizure threshold.

More out there thinking, can you continue on current career path due to epilepsy? If not maybe this is the right time to go back to school

:hugs: from Canadian member

 

[SlimBlue]

Hi Gareth, welcome to CWE

I have TLE too, and Lamtrigine is one of the meds I'm on.

In can cause sleepiness, it can also have the opposite as well- I get chronic insomnia from it.

However, a lot of the side effects are 'adjustment side effects' and will settle down hopefully after a bit.

It's used as a mood stabiliser as well as an AED, so the fluctuations between down and crying, and angry and agressive are also a normal adjustment side effect, and should settle down as well.

It's a lot to take on board, it's normal to feel gutted about it all.

Don't be worried about the mri, you're just lying in a tube trying to be still. These days they're not quite as cramped as they used to be 20 years ago, and have calming images to look at. It's not painful in any way, just a bit boring and quite hard work not to move your head much.

If you do ever get your E under control, you'll be able to get your license back after a year without a seizure- and a lot of people do get their E under control once they find the right selection of meds/dosages, so don't give up right away and presume it's all fucked for ever.

I know that's easy to say, but it will get easier mate.

I had to give up being a raver in the 90s, but I got over it

PM me if you want to chat.

 

[lindsayschu2]

I don't mean to be contrary, but I wouldn't give up on your career yet or even reconsider whether you can continue with your career at this time. It's way too early for you to know yet and that won't help your disposition. I clearly also have epilepsy, and have an EXTREMELY demanding corporate job with a lot of visibility to leadership. Is it hard to have epilepsy with this kind of position? Yes it is--I have days i have to work from home, and I have days I have mild simple partials all day (yesterday was one and last night I had them all night and am exhausted) and I just deal with them and continue on. I have mostly good days now. I've gone through all kinds of med changes, horrible side effects, depression, anger, you name it, but I've learned to cope, hide the mood swings, act professional, and manage, until everything levelled out. You are in a period of change, and I'd keep that in perspective and know your moods are not stable NOW but that is and should be transitory, and if it isn't, it may become time to evaluate a different med. Yes, epilepsy may mean life changes for sure, such as driving. But you can't draw those conclusions now, you are way too early to know. Please just take things day by day and keep hope. Many people with epilepsy adjust and lead normal lives, or barring that, lead lives very close to normal despite making adjustments. Carry on and take good care.

 

[arnie]

Hi Gareth,
I was diagnosed with epilepsy in 1981 and have had probably 10,000 complex partial seizures since then, as well as a handful of tonic-clonics. In spite of that, I have gotten a Bachelor's and a Master's degree, have had a 15-year career as a social worker, and have owned my own business for about 15 years. I've also been married for almost 35 years and have raised 3 wonderful kids. You can definitely have a good life even with epilepsy. My main advice to you is to take charge of your care, since you can't necessarily trust neurologists or even epileptologists to do it for you. I've been on Lamotrigine for about 15 years and for the past 6 months I have had zero seizures. That was only because I found out a pattern of my seizures and, in conjunction with my pharmacist, figured out that I need to take the meds 4 times a day instead of 2. That allowed me to have a high enough dose to control my seizures without having side-effects. Also, you are on a really low dose of Lamictal. I am taking 650 mg per day now, and I was on 400 for years. Has your doctor done a blood level on you? At 150 mg. I would be surprised if you're even in a therapeutic range.
Finally, I urge you to go to seizuretracker.com and begin a log which may help you find a pattern in your seizures.

All the best to you. Carry on!