Neurology Appt.approaching

[wheatenbread]

As 1000mgs of Levateracetam does not completely stop the seizures. What would be the next stage of treatment. Very nervous about any drug increase as I don't want to be any more tired than I already am. I would appreciate any positive narratives.👍

[RR25]

Are you on 1gram twice a day or what is your perscription? If you don't mind me asking? There is opportunity to increase the dose if you are tolerting it ok.

I moved to 1500mg twice a day then 1750mg over a period of time. Unfortunately, this didn't dramatically reduce my seizures so at a push my consultant decided to up to 2gram twice a day, next step is change to brevictam. But thankfully the increase has worked.

Hope this helps.

[wheatenbread in reply to RR25]

thankyou for taking time to reply to my Q. My prescription is 500mg twice a day. I’m very nervous about any increase!! Would adding a further 250mgs morning and evening cause fatigue? That’s my main concern.

[RR25 in reply to wheatenbread]

You might experience some but hopefully only short lived. I had extreme tiredness for about 2 days and leg pains after my last increase and that was me. I am also on lamictal 200mg BD. Some consultants suggest an add on drug before increasing some. If your fatigue is too much it may be worth getting your bloods done to see if there is another cause because your body should have tolerated the dose by now. Some people don't tolerate drugs compared to some others. Hope this helps x

[wheatenbread in reply to RR25]

That’s very good of you to take the trouble to respond to my post. I appreciate your input

[RR25 in reply to wheatenbread]

Hope your appointment goes well 🤞

[cyuk]

I would say, they’ll likely increase Levetiracetam higher, that is of course if you tolerating it well. There are guidelines for maximum dose of approx 3000mg’s daily, however it can increase beyond that. I’m currently on 2000mg twice daily, as well as 2 other AED’s at max dose. As with any medications it can take a while for your body to adjust to the increase - following a few months if you feel like it’s not getting better, reach out to the dr, also if you have a contact like a specialist nurse reach out to them too.

Wishing you the best ☺️

[wheatenbread in reply to cyuk]

Thanks for replying and taking time to share your experience 😀

[Antelopes]

I take 1500mg in the morning and 2000 mg at night, but also take cenobamate. Which has things tied up okay.

[busylife]

I'm now a 66 year old woman. I had my first seizure, in my sleep, full on tonic clonic, in Sept 2020. I was in hospital for 5 days where they did among other tests a CT brain scan and an MRI brain scan. Thankfully they revealed nothing untoward. I was told I might never have another seizure but just in case I wasn't to drive for 6 months. They referred me for an EEG (where they glue electrodes to your scalp and try to induce a seizure/see if they can see any seizure activity) and an outpatient neurology appointment.

I had to wait 5 months before I got the EEG appointment. During those 5 months my husband noticed occasions on which I didn't seem, in his words, "to be with it." I was drying my hands on the towel and kept on making the drying motion even after my hands were dried etc. I think these were absence seizures.

Anyway, in Feb 2021 I had the EEG and it revealed "slight seizure activity." As a result I was asked to start to take Levetiracetam, 500 mg twice per day. That was great until I had a further nocturnal tonic clonic seizure in June 2021, as a result of which my medication dose was increased by 250mg so that since then I've been taking a 750mg tablet in the morning and the same at night. During the months between Feb and the second seizure in June 2021 my husband said he had never noticed any more absences so we think the 500mg dose x 2 per day was enough to prevent them but not enough to prevent the second tonic clonic.

Thankfully, I haven't had any more seizures since June 2021 and have continued on the 750mg tablets twice daily.

So, what I'm trying to say, longwindedly, is that sometimes increasing the dose is necessary. The neurologist told me that it's not an exact science; they start a patient on the lowest possible therapeutic dose and if that works - great! If not, they increase the dose until eventually, hopefully, they stop the seizures. Sometimes they may have to add in another anti-seizure med to the mix.

As for tiredness: I only noticed tiredness in the first few days to a week of beginning to take the tablets. At the very start I was given 250mg to take twice daily for a week, to get my body used to it. Then after a week I began the 500mg tablets night and morning. At that time I felt unsteady on my feet; unbalanced; almost as if there was a weight hanging off the back of my shoulders that was going to make me fall over; and I was a bit tired. But after a week or so those sensations wore off. When I had to increase the dose in June 2021 I experienced the same tiredness and feelings of unsteadiness but they wore off pretty soon.

I don't feel especially tired as a general rule. I'm not sure if that's what you mean - that you feel tired all the time. I do get tired and my sleep is often disrupted. I can fall asleep but often wake up after a couple of hours and lie sleepless for ages. I don't know if the sleep issues and resulting tiredness are caused by epilepsy, by the epilepsy medication or just by getting older! At least I'm in the fortunate position of being retired and not having to do a day's work after a lack of sleep. Mind you, my sleeping has improved since taking Magnesium Glycinate about an hour before bed - as advised by my neurologist to whom I mentioned my disrupted sleep patterns.

So, if you have to increase from 500mg twice daily I wouldn't be surprised - that's the lowest possible therapeutic dose. Personally, I've been doing well on Levetiracetam. I think it might be making my hair thinner although I am aware that thinning hair is a thing can happen to older women anyway and it does make my skin a bit itchy at times (Dr gave me an emollient spray to help with this at bedtime) but those are, in my opinion, small things to cope with if the medication prevents me having any further seizures, which so far it has done for well over 3, nearly 4, years.

[wheatenbread]

thankyou for your most helpful reply!! I will consider all of the information. It’s really good of you to take time to clarify my questions!! I already take a blend of magnesium in evening. 👍🏼👍🏼

[busylife in reply to wheatenbread]

You're welcome! I know what it was like when I was looking for information myself and was glad if anyone took time to answer me. I wish you all the best.