Before my last seizure in April, I had been taking 500mg twice a day since diagnosis in April 2021 after a second seizure. First being in Jan 2021.
Since april, neurologist increased the dosage to 750mg twice a day which i dont seem to be tolerating. Ive had 4 episodes of serious angry outbursts towards hubby to the point its almost caused us to split.
Seeing the neurologist on 24th october to find out what is actually going on in my brain, as a recent hospital discharge letter mentioned Right Mesial Temporal Sclerosis.
Also had a recent middle ear infection with effusion which is causing disorientation, dizziness and confusion. GP sent me to A&E 3 weeks ago to rule out a stroke but CT didnt show any changes since previous CT in April. Going into 6 weeks now with disorientation.
Last Wednesday I wore a sleep apnea monitor overnight so waiting for that result. Constantly fatigued which isnt helping either, nor is being stuck in the house all day on my own.
Just feels like im going mad and when i do go off on one, hubby says im "Tapped" in the head.
Never been like this before, ive always been laid back and easy going, but have noticed a change since Keppra increase.
Has anyone else noticed a change in behaviour with Keppra?
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Dawn43
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Do you mean 750mg x 2 per day? Keppra was designed to max out at 2 x 500mg. Anything above 1000mg a day won't have any noticable effect. The side effects will worsen.
If your examintion points to right-sided mesial temporal sclerosis + medication hasn't improved your epilepsy, surgery is the standard + easiest option. It's more pleasant than the torment they're putting you through. Very high success rate too. Patients return to work after 3 months maximum. I did.
I work as a medical interpreter in clinics. Mainly neuroIogy. I double check everything I post on this forum. I get an opinion on every message on this forum the same day. As I did in your case.
Hi thank you for your reply. Yes i take 2 x 750mg every day. My mistake was I'd forgot to take a few keppra in the evenings back in April, hence bringing on a seizure, otherwise I'd still be on 2 x 500mg every day.
I havent officially been told anything by my neurologist, but a recent mri report to my own doctor indicated Right Mesial Temporal Sclerosis. I have an appointment with the neurologist on the 24th October.
I had my first seizure in January 2022 and got diagnosed in June 2022 as I again woke up in hospital, they started me on kepra 2 x 250mg then went up to 2 x 500mg and then 2 x 750mg,i feel the same, due to a mistake at the pharmacy I didn't switch to the 2 x750mg and stayed on the 2 x 500mg for longer. Was feeling good for about 4 weeks. But since being on the 750mg I've had lots of seizures (2 this week)
My family has been brilliant looking after me, but even I feel that I've snapped for no reason. And my mood is mostly bad.
Been diagnosed with tonic/clonic seizures and the recovery can take 2 to 3 days, which I'm stuck inside(normally led down)
My neurologist wanted to increase medication to 1000mg twice a day when i saw her in June but I said no, not until all tests results have come back and i know whats going on.
I had the eeg which was normal. A lumbar puncture which was also normal. An mri which showed periventricular white matter disease which as she said there is a lot of it for my age(43), and Mesial Temporal Sclerosis. My concern is where is this Temporal Sclerosis going to lead to next.
Ive also been having a lot of right sided weakness and wobblyness, mainly in my right leg but no strokes on ct.
Also awaiting an ENT appointment as ive got middle ear and mastoid opacification.
I had my first nocturnal seizure in September 2020. An EEG 5 months later, in February 2021, revealed "slight seizure activity" as a result of which I was put on the epilepsy register and asked to take "a low dose" of Levetiracetam. (This is the generic form of Keppra.) So I took 500mg at night and 500mg in the morning: this dose stopped my short absence seizures which my husband had only noticed happening since the seizure in September 2020. However, in June 2021 I had a second nocturnal tonic clonic seizure, as a result of which my dose was increased to 750 mg to be taken twice per day. I've now, thankfully, been seizure-free since June 2021. Before starting Levetiracetam/Keppra I had read where it might cause mood swings/anger issues so from the very beginning I have also been taking vitamin B6 tablets every day as they can help prevent "Keppra rage." Maybe I'm just lucky but we haven't any rage issues.
My rage is terrible to the point hubby said it is totally out of character for me which it is, and he doesnt deserve it. I feel so bad afterwards when ive gone off on one.
I found that going for a walk clears my head and i do feel a lot calmer when i get back home.
It's not an easy thing to cope with and I also think the partner/spouse of the diagnosed person, while they're not taking medication which might make them grumpy, they're stressed out over the whole trauma of watching their spouse have seizures - it takes its toll on everyone. I reckon that my husband has suffered from some form of post-traumatic stress after seeing me have 2 grand mals and wondering will I "wake up" and, if I do, will I be "normal". He's frequently checking through the night to see if I'm still alive/breathing etc.
The frequency of my seizures is spread out, between Jan 2021 and Oct 2022 ive had 3. Each time waking up hours later. I still dont know what type of seizures im having or whats caused them. When my husband saw me unconscious in Resus attached to machines, he was terrified.
He checks me at night also as i stop breathing when im asleep and have recently worn a sleep apnea monitor overnight so waiting for that result. Your hubby sounds like mine, by making sure we're still alive, bless them 😇.
Hia there, I only saw your comment now. Just to say my poor fiancée is constantly sleep-deprived. In the night she is on edge expecting me to have a seizure. I haven’t had a tonic clonic seizure in a while but just the sight of someone you love having one haunts her totally. I do have regular “night terror/sleepwalking” episodes in the night which the neurologist isn’t sure whether they’re epilepsy or something else but they are very stressful for her because apparently I get very distressed, panicky and often desperately want to go outside which I often do!
I’ve no doubt she has a form of PTSD which I feel terrible about.
In practical terms we have now started sleeping in separate beds and then snuggle in together in the morning when there is time. It does help her sleep although I doubt things will ever get back to how things used to be unless I get well. Hope this helps if only to know you’re not the only one grappling with this.
Thanks for your reply. I myself dont sleep too good at night, I can be up 3 or 4 times but ive been like this for around 20 years, since suffering panic attacks. Your partner sounds very caring and concerned about you and vice versa.
From what neuro said yesterday, my seizures are the result of damage caused by strokes. On medical record, a discharge letter sent to GP states Status Epilepticus which im worried about.
Im the same as yourself, I just want to get back to how i was before these problems started.
I hope you both take care and look after each other.
I've just got off a video call with my neurologist, who's upping my kepra to 1000mg x2 and then in 2 weeks it's going up to 1250 x 2, seems like quite a lot😬.
I've heard about the vitamin b6, but I can't absorb b12, I have injections every 10 weeks at the doctors.
Anybody know if b6 and b12 are the same or similar?
My seizures are ok, havent had one since April. Its the increased medication that has been the problem. Seeing gp tomorrow and epilepsy nurse at some point. Hopefully the neurologist will see whats happening and either reduce it back to 500mg twice a day or prescribe something that i will tolerate.
Thanks for posting. Sorry to hear that you’re struggling with how you’re feeling.
We know side effects can happen with epilepsy medicines and it can take a little while to find a medicine and dose that works for you with the least side effects and best seizure control.
The range of behavioural problems that can be side-effects of levetiracetam (Keppra) is varied. It includes agitation, irritability, bad temper or even aggression.
The British National Formulary has further information on levetiracetam and side effects. bnf.nice.org.uk/drugs/levet... It also states that the maximum dosage that can be prescribed under medical supervision is 1500mg twice daily.
It’s good that you have an appointment coming up soon. It will give you the opportunity to discuss how you’re feeling since the increase in your medication and if you are diagnosed with mesial temporal sclerosis you can discuss your treatment options.
If you wish to talk to our helpline team and you live in the UK please do phone our freephone helpline 0808 800 5050.
Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.
I noticed on my medical file at a GP appt last week that a ct scan 4 weeks ago in A&E stated Multi Bilateral Basal Ganglia which i wasnt told about after the scan. All I was told was that there wasn't any changes since ct in April, but obviously there has been. Also noticed Status Epilepticus, again I knew nothing about.
Im wondering whether it is the increase in meds thats causing my anger or is it the changes that are happening in my brain.
As we’re not medically trained it's difficult to say what you are experiencing is due to your side effects or other reasons not related to your epilepsy.
If you have ever had a seizure that’s lasted too long and been taken to hospital and needed emergency treatment, then this is usually referred to as Status epilepticus. We have more information about status epilepticus on our website epilepsy.org.uk/info/first-....
If you don't have a care plan, then you may like to complete one with your doctor or epilepsy nurse. The care plan should say how to tell if someone is in status epilepticus and what to do. epilepsy.org.uk/app/uploads...
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