To be so petrified of starting my new medication?

[ThornAmongstRoses]

I have got epilepsy and was first diagnosed 21 years ago. I had seizures on and off for about 8 years until ultimately they stopped in 2006.

However, completely out of the blue, in Summer 2019, after thirteen years of being seizure free I had a tonic clonic seizure. To cut a long story short, I’m now 18 months down the line, and a further two seizures down the line, and I’ve been prescribed another drug to take alongside the one I already do.

I’m supposed to take my first dose tonight and I’m petrified.

I feel panicked and I’m worrying that it’s going to make me ill and that by taking a new drug I’m having to admit to myself that I’m under the control, yet again, of an illness I hate.

But at the same time I know that unless something changes I may never get my normal life back.

I just feel so scared and I don’t even know why

I’m so sorry that you are feeling this way.
It is always hard to come to terms with a long term illness and a life of medication.
Just think, this could be a breakthrough for you and it could work really well. If it doesn’t then you can stop taking it but at least you will have tried it and you can never say ‘what if’

I expect it's just anxiety about the unknown. Once you've taken it and seen that you're fine then it'll be much easier to take it next time. Hopefully this will put a stop to the seizures you've been having recently so try to think positively about it helping you and be brave! xxx

Do you feel able to say what the new drug is called? It's just that someone else (myself included) might have taken it so might be able to reassure you.

Do you feel able to say what the new drug is called? It's just that someone else (myself included) might have taken it so might be able to reassure you.

I would love reassuring posts from people who take it, but I’m very aware that if I give the name of the drug lots of horror stories will come forth too

I currently take lamotrigine and I remember feeling petrified before I started taking that when I first went on it, but it ultimately gave me 13 years of being seizure free.

I need to hold on to that thought when it comes to taking this drug too.

I've been in your shoes, except I think I had only been seizure free for 8 years. I had to try multiple tablets, multiple dosages and was in a pickle but I never had any further epilepsy issues. You've got this!

It's far far more dangerous to have poor siezure control than to take a new medication.
Can you try and frame it for yourself as increasing your safety?

You make a good point - Dr. Mumsnet doesn't always have the best bedside manner!

It’s just so difficult. When my seizures returned 18 months ago it had a massive impact on my life....my licence, my job, my children...the whole stability of my life was turned upside down.

This may be the drug that gives me my life back but I feel so anxious

I have taken Topiramate in the past and Gabapentin. Neither for epilepsy, but at quite high doses. They didn't work for my condition, but I just wanted to reassure you that they're ok. My daughter used to take Keppra, which was ok too

lougle It is Keppra I’ve been prescribed. I keep reading the side effects and panicking. I didn’t take it last night and all day I’ve been telling myself I will take it this evening....but I haven’t

If you've received it as a tablet, break it in the middle and take half as your first dose.

I'm new to epilepsy, it's only been two months since my first tonic clonics and I've been on keppra since then. I'm told it's one of the best but side effects are depression. This was from my epilepsy nurse, I've suffered with depression before so I may need to change in future.

I'm taking 750mg twice a day. All I've noticed is I'm more tired and have less patience with the kids, but that could be lockdown related anyway

My son has taken Keppra since 2015 when he was 10. He hasn’t had any side effects (or seizures either).
It does take a leap of faith to take a new medication, to put a new set of chemicals into your body. I hope you can be reassured by stories like my son’s.

It is ever so hard but you really should try and take it as currently you could have a seizure at any moment, which is risky for you and your family. I've taken Keppra and also had no side effects. Please try taking just a 1/4 of a tablet.

I take Keppra too. It did have an effect on my moods at first but my neurologist lowered the dose straight away and I've been fine on it ever since (seven years). Just incredibly grateful that I can take something which will hugely lower my risk of further seizures and allows me to drive/play with the kids/go out and not worry constantly I'll have one and endanger myself or others.

Keppra was the drug with the least side effects of all the epilepsy drugs. Take it, then you can always say 'this isn't working for me' if you need to.

I take Keppra. Initially it made me drowsy and I had a stuff nose but 3 months on I seem to have no side effects.

• stuffy nose

@barberousbarbara

I take Keppra. Initially it made me drowsy and I had a stuff nose but 3 months on I seem to have no side effects.

That's good to hear

I’ve been prescribed 250mg at night for two weeks, then increasing this fortnightly until I’m taking 500mg morning and night.

I nearly took it tonight.
I took the tablet out of the blister pack but I just rolled it between my fingers for 15 minutes before then chickening out.

I’m so pathetic