Just in need of moral support

[Mango401]

I was diagnosed with epilepsy after having my son 3 years ago. I had eclampsia with my son and had a seizure during labour. I then had another seizure 7 weeks later and was put into Epilim. I was then changed from that due to side effects to Keppra. I was steady on that for a year and then in January this year I suffered from two tonic clonic seizures within 10 days of each other. From then, they decided to change my meds to lamotrigine. I'm currently on 75mg twice a day, increasing today to 100mg twice a day. I still don't feel "normal" though. I seen my epilepsy nurse a month ago and she believes I am having "mini" seizures still. My head jolts to the side a lot throughout the day and will have random spasms in parts of my body. I will also have the "dooming" feeling come on, and I kind of zone out, and within 5 minutes I feel slightly better. I have a great family and partner who supports me a lot, but no one understands how it is for me. It affects me at work, and it affects me being a mother!! Instead of taking my child to the park or for a walk, I lie on the couch because I feel so tired and do not feel right most of the time! I feel like I'm in a constant brain fog going through days without emotion! I'm so upset and frustrated, I just don't want to feel like this anymore! I want to live my life properly! I've struggled with anxiety since January and feel like it's back under control but constantly feeling like this is getting me so down 😔 I'm due to see my neurologist again but they are so "back logged" in patients, it will not be until into the new year although I should of been seen now! I get so irratated with epilepsy as its not an illness where you can just change your meds straight away, you have to wait weeks to increase and change over and wait to see how you feel all the time not knowing if it's going to work or end up making you seizure!! I hate this so much, I just want to feel normal again!!

[AlexT]

What type of dosage were you on with Keppra ??? . Only asking as this has been the only medication i was able to take without having serious side effects. Lamotrogine gave me the worst side effects out of them all (and i tried 5 different meds).

I do get periods of depression with it, but overall its been far better than the other medications i tried. At first the depression will be quite hard to overcome, but once you get used to it the severity wont be so bad.

I know what you mean about the waiting periods for increases or changes in meds, its not like medication for other conditions where you are given a tablet and it helps/works straight away.

Good luck and i am sure things will get better

[Mango401 in reply to AlexT]

I was on 750mg of Keppra twice a day! I was on that medication for a year and it was fantastic, I never felt any side effects at all but after a year it just wasn't holding me and I kept have tonic clonic seizures! I don't feel depressed at all, but my anxiety can be up and down on these meds!

Thankyou

[AlexT in reply to Mango401]

I am surprised they never upped your dosage of Keppra before swapping you to an alternative if it agreed with you. I started on 250mg twice a day and over a period of years worked my way up to 1500mg twice per day. Im not playing at doctor and dont pretend to be one, but there was room for them to up your dosage on the medication you were already on.

Good Luck

[Mango401 in reply to AlexT]

She didn't suggest at all putting my Keppra up more! At the moment she has given me control with my medication if I want to up it. I upped it to 75mg and have now upped it to 100mg. I can go to 200 if I still don't feel right. I feel I jerk a lot just now and space out, generally not feeling right. Luckily I'm on holiday just now, I have a really full on life and was struggling at work before(I work with children). I feel like I wouldn't even have been able to attend work this week at all because of the way I'm feeling! I've yet to come across a person who is just on lamotrigine solely. I really want to phone my epilepsy nurse and ask her to put something else in with the lamotrigine as she has already suggested but I'm worried she will ask me to wait until I reach 200mg. I'm just so tired of feeling like this though! I'm unable to do anything! It makes me feel like I can't leave the house!

[AlexT in reply to Mango401]

I only took lamotrogine once and it made me feel really bad and like you say they usually use it along with another drug so you are on a dual therapy. Maybe try 1000mg of keppa twice a day and you might be able to control your seizures and also get your life back at the same time. All the meds we can be prescribed all have different side effects with people and there is no "one drug that fits all" sadly. Hope you can get things sorted and feel yourself again

[GrandmaM]

My son's neurologist has had him on as many as four different drugs at one time, so they can be used in conjunction. That gives a lot more possibilities for treatment. However as you can imagine it takes quite a while to work through and find the combination that is effective. And even then the body can change in its response and effectiveness of the medication. It requires a lot of patience but once your doctor finds the right combination it is well worth the trouble.

[EpilepsyAction1 Partner Epilepsy Action]

Dear Mango401

It sounds like you’re having a difficult time with your epilepsy. I hope you hear from others in our community.

If it will help for you to talk to our helpline team, you can phone Epilepsy Action Helpline freephone 0808 800 5050.It is open Monday to Friday, 8.30am until 5.30pm.

Finding the right treatment can be difficult. Side-effects when starting on a new medicine or when you increase the dosage are common. It could be in a few days, when your body has had more time to adapt to the new dosage, you will feel better. If you don’t please do talk to your doctor or your epilepsy nurse.

You may also be interested in our local groups, including coffee & chat groups. These groups are a good way to talk and contact others who understand what you are experiencing. You can see if there is a group near to you on our website. epilepsy.org.uk/near-me

Regards

Diane

Epilepsy Action Helpline Team