It’s been 3 years since I suffered my first full tonic-clinic seizure at the age of 41 (nearly 42). It’s taken me all this time to share my thoughts and feeling with other people who understand.
My thanks to all those who responded to my first posting.
What it has now done is open the door for me to ask more about other subjects that come under the ‘epilepsy’ umbrella and one of those things is medication.
After my initial seizure on 1 Feb 2017, I was given a diagnosis of left temporal lobe Epilepsy, But it took 10 months before I was put on Zonisamide which was slowly increased over a period of several weeks until is was taking 250mg twice daily. Side effects were very dry mouth, itching/hives a general poor skin condition.
When it became obvious after a period of 15 months that the absences had become more frequent in July 2018 I began a crossover to Lamictal / Lamotrigine. Over a period of several months, I am now taking 300mg twice a day. Side effects are as before only I’m finding them worse. The dry mouth is the hardest to live with along with the severe itching and flaky dry skin.
My emotions are all over the place. I feel exhausted all the time and now feel like giving up. I have been trying so hard to cope with all this for one reason and that was to drive again. But I had a couple of absences on the 2 December so contacted my GP. The Neuro dept at my hospital said my own consultant was away and decided to ‘top me up’ with 10mg of Clobazam with my evening dose of Lamictal. I was told this was a short term drug and that I’ll be reviewed again and that was 2 months ago. I’m now on my 2 box.
I still get all the same symptoms as above but on top of that I feel tired/exhausted. I have no get up
And go and really don’t care much about.
If you don’t mind sharing, what drug therapies are people taking and in what doses. How do you cope with the side effects of any? Anyone doh d a particular drug good or appeared to work well?
I know we are all different, so each of us will be affected differently by each drug but I’d be grateful for any information or advice anyone feels happy to share.
Thanks in advance
Written by
MR75
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Same as Lisa, I replied to your last post before I read this, and Lisa has Left Temporal Lobe
Hi again,
I’m currently on Zonisamide 250mg twice a day, Keppra 750mg twice a day (found this drug very hard mentally & physically) & Clobazam 15/18 mg once a day (break the tablets ups & take 18 if I’m feel more anxious)
Mouth is always dry, just carry a bottle of water around otherwise can feel light headed. Taking vitamin B6 & B12 has helped and making myself doing exercise - gym, yoga, walking, golf & badders.
Especially as Zonisamide does have an impact on your bone density.
Was previously on lamotrigine I thought of it as a happy pill, but didn’t do much but can’t say much about these!! Having gone years controlled with primidone then it stopped working out of the blue 🙁. Since then not much luck !! X SJ
Hiya MR75 sorry to hear you going through all this. First of all don't give up !!! I had seizures from the age of 6 but was diagnosed when I was 12years old. I went through 2 pregnancies which was not fun - lots of seizures, seriously scared me something was wrong with the baby because of the medication - when he was born all ok.
I tried all sorts of medication: carbamazepine, lamictal, kepra, depankine chrono, topiramate now I'm on oxcarbamazepine.
Side effects: carbamazepine damaged my thyroid - now on medication for it , all epilepsy meds make give you vitamin D deficiency which can make you tired , my liver is not happy , I have sensitive and itchy skin - GP give something to wash with and antihistamine everyday. I'm on so many meds , don't even know which give what side effects 🤔😁.
Seizures: unless I don't sleep, or have serious pain for more than 24hours ,I'm ok. They are under control. My problem is the the first two and for that I would need some PRN medication - when required.
I hate the seizures even though I don't have serious one , unless I'm off medication, they wipe me out.
You don't give up , keep on the doctors, don't take too many tablet's thought especially like - clobazam , diazepam as they just wipe you out and not really helping the epilepsy. They are sedatives and addictive. Only take it when you need it. You will be fine, make sure you get enough sleep, relax and enjoy life !
Don't pay attention to seizure if they come they come. Keep diary to show your neurologist but move on with life.
Concerning Clobazam just be careful don’t just stop taking them.
When I was put on Clobazam for anxiety it was great, then I read the leaflet- panicked & stopped taking them thinking I don’t want to get onto these! I had 2 big seizures, went back onto 10mg tried next to gradually reduce & ween myself off. Got down to 2mg & just couldn’t do it, I’m now on 15mg as I say to my neurologist my body is addicted to them!! But they work & he is ok with it.
I've been taking Lamotrigine for over 10 years in which my dose is 400mg a day. About two years ago I began to have anxiety in which I was given Clozanapam(actually an anti epileptic drug) 0.5mg to level out the Lamotrogine to keep me calm it actually work for me. Maybe you should ask your Dr. if they can have you take 400mg once a dayand then test you in a month for your levels. I took 300mg before they upped me to 400mg. Ask them for the XR it actually go in the bloodstream fast without all that dizziness. The other drug Clobazam I have no knowledge of this particular drug.
Hi.. thanks for your reply. The reason they’ve got me up to 600mg was that is was having absence seizures and I’m still having the odd occasional one. The Clobazam is a benzodiazepine and is the same family as Valium. Lamotrigine gives Me horrendous dry mouth and bad skin. Behaviour wise, it makes me very emotional and I can cry watching something sad on TV. I had been 10 months free until the week before Xmas and bam.. absence seizure. I knew then I’d lost the chance of getting my drivers licence back. That got me worked up. Doctor calls my Neuro team to say what can she do to help me, and the just came back with a ‘add some Clobazam’ and we will review ASAP with appointment. We are not far of The beginning g of March and nothing. I don’t get blood tests... nothing. I feel like they’ve gone. Yep, you’ve got epilepsy and here’s some drugs- Bye 👋🏼
I’m at a stage where I think I’d take anything regardless to the side effects for it all to go away 😔
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Hi all !!.
I have between 1 and 4 seizures a day. :-(