Hi! Just wanted to see if I could gain some advice and meet others in a similar position to mine! I was diagnosed as epileptic just over a week ago after having my first seizure Christmas Day! I have tonic-Clonic (grand mal) seizures, I’m on Keppra, and am still having seizures twice a week. I just wanted to know of any advice for both keeping myself safe and my mental health! I’m 20 so I’m still trying to get my head around the condition, my auntie died of a epileptic seizure so for me all I can think about is that!
Thank you! ☺️
Written by
Chrissy1806
To view profiles and participate in discussions please or .
it can feel a shock to get a diagnosis of epilepsy and you will feel concerned because of what happened to your auntie. It can take a little time for your medicines to become effective. But the good news is that 7 out of 10 people can get good seizure control with the right dose of the right epilepsy medicine.
We have some information for people who are newly diagnosed with epilepsy which you might find helpful. This has information about your treatment and care as well as some useful links: epilepsy.org.uk/info/newly-...
It can really help to reach out and link with others affected by epilepsy. We have some ways that you can keep I touch with people online.
We also have some informal coffee and chat groups that meet in local areas that you might be interested in: epilepsy.org.uk/involved/br...
If you have any questions or want to talk anything through you’d be welcome to get in touch with us at the Helpline. The number is Freephone 0808 800 5050. Its confidential and you can tell us as much or as little as you want: epilepsy.org.uk/info/suppor...
Hi Chrissy, I’ve had epilepsy since I was 13 (34 now) and had a recent seizure relapse for the first time in 18 years (you can imagine I was gutted!). I am lucky that we eventually got to a stage where I was well controlled. Epilepsy is tough on mental health - I’ve certainly felt ‘why me’ and have wandered around feeling terrified that I may drop and have a grand mal. I’ve been negative. Heres my advice to you-
- try your best to be positive (easier said than done I know!)
- Epilepsy can be really well controlled(fully) in 7/10 people.
- Understand that it can take time to find the right medication for you (took two yesrs until I became seizure free but this does NOT mean you wont be seizure free sooner hopefully). There are many meds out there.
- If you are female and planning a pregnancy in the future you shouldnt be prescribed valporate (Epilim). It worked great for me but being a woman of child bearing age I had to come off it last year and it was SO hard coming off a drug that I felt had been my saviour for so long!
- have faith jn you doctor but you should also be assigned a neurologist and epilepsy nurse (if you are in UK). Please take their advice!
- At the moment you are newly diagnosed so its likely your keppra will keep being increased until you see improvement. Don’t be put off if doctors suggest adding a second drug to the mix. Some drugs help each other to work. I’m on two,and it took two meds to control me properly in the end.
HANG IN THERE
If your mental health is suffering, reach out. Get counselling. Do not suffer on your own.
Keep busy! Exercise, eat well.
Get savvy on what you can and and cant take with your epilepsy meds. E.g cough medicines can lower seizure threshold.
You can drink alcohol but if your hyper vigilant like me, then dont - excessive alcohol drinking can effect seizure control.
Do not miss doses.
Get regular sleep.
The hardest for me - don’t dwell. Don’t let epilepsy become the main thing on your mind. And definitely do not read too many negative things on forums. Before I started keppra I read so many horror stories about people getting side effects etc... doesnt mean you will.
Stay strong, you’ll get there. Might take time. And don’t best yourself up ever - you didnt ask for this.
Hey Chrissy1806. It’s a horrid journey but don’t give up hope. A lot of these AEDs(anti epileptic drugs) have strong side effects soo don’t be afraid to question any concerns. I know that Keppra has quite a few but what may not work for me may work for you. Do your research and don’t be afraid of extra support. Maybe it’s wise to consider a “wet room” if you’re having these many seizures and possibly check out “link line” from your local council for a bit of extra safety. There’s lots out there it’s just where to find the extra help. Giving “Epilepsy action” a call may help. “Scope” is also a good charity to research online.
We also need lots of sleep. Get as much as you can and stay hydrated.
I wish you all the best in health and stay strong🤞💪🤗
Chrissy, I was diagnosed in the mid 80's and it took me a long time to get controlled, taking 2 or 3 different meds at times, seemingly to no avail, but finally I got there.
I was put onto Keppra in 2012/13 because my seizures came back . I usually call it Levatiracetum, because that is the name on the boxes that mine come in, so had to work out what Keppra was on here. LoL
I had to take it for some time before I got used to the side effects that I had, now I consider it a Godsend.
I don't think that it was available when I was first diagnosed, but I hope that it works for you too, given time or maybe necessary 'tweaks'. Hopefully current thinking and medication will get you sorted out asap, life's a bitch at times can't it?
Hang in there Chrissy, check out any & all available aids and I wish you way.
Hi Chrissy.. I have epilepsy since I was 11 yo ..and on my teen years I have them very often, sometimes they need to bring me back from school or I ended on an ambulance ride..I am taking tegretol (carbamazepine) and primidone and it has working well with me.. I didn’t have any seizure for 34years, but two years ago because of family distress and work stress I had one.. and slowly I’m doing what I used to do before the last episode.. I’m not there yet but I know I will.. keep calm don’t get angry at anything and do your things slowly now and soon you will be doing things .. don’t stop taking your pills that and sleeping is important.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Starting my third year of seizures
Son age 8 epilepsy diagnosis
Seizures and encephalitis
Driving with Focal aware seizures
