epilepsy playing up but nothing showed on EEG.

[jessica-amy-wade]

Hi there,

i am 25 and been diagnosed with epilepsy when i was 18. They got it under control around 2011, i have had a few ups and downs been nothing serious.

But recently i have been suffering from

.zoning out (absent seizures)

.Severe headaches

.memory loss

.strong jerks which feel like a seizure

.normal jerks, through out the day and everyday

.recently my words get muddles up. I have noticed when i am writing a txt, i re read before sending it and i see another random word replaced for something completely different....i dont know if this happens when i zone out or that this is something new that is wrong.

My EEG test came back ok and nothing different from the 1st one i had years ago...i am concerned that if nothing is showing why am i having all these problems? My body just doesnt feel "normal". I feel i have no control over it. My GP has signed me off from using sewing machines at uni as i am a fashion student until my consultant sorts things out and my medication as he did mention changing my meds.

I am seeing a consultant tomorrow morning but i am wanting peoples thoughts and stories if anyone has had anything similar. As i am wanting this to be solved and i want answers on whats going on.

medication wise i am on

. Lamotrigine 400mg and

.Keppra 2000mg

a day.

I hope to hear from someone soon.

thanks for reading.

Jess x

[gotmarried2012]

Hi have you had a head injury or is this just seizures it is interesting to know.

[richard1554]

hi i have same as you but have been diagnosed with front loble temporal dementia and coping but all I want to do is sleep gets me down but keep going hve had enough but things get bad iam so fed up but carry on

[sporan]

Hi Jess,

Have to say identical symptoms plus a few more, I am 60 but have a medial temporal lobe lesion and recently had an ambulatory (walking) eeg over two days and two nights with nothing showing and frustratingly two nights after removal of pretty head spagetti had a momentry blackout and fall in bathroom (thankfully these severe events are rare).

My meds are 1500mg Keppra and just been changed from Lamotragine 300mg to carbamazapine 800mg with little difference other than massive bout of tummy trouble during change over, I convinced meds and evidence suggests meds, but had to have a colonoscopy 'just to rule out other causes'. Just had result as OK so uncomfortable and embarassing proceedure for nought.

Next up Neuropsychiatrist tomorrow.

Im only 4 years into experience and having lost licenses (HGV and car) and been told lorry license permanent loss and car most likely permanent.

Most recent check have been for possible surgery to 'help' with siezures but taking each day as it comes.

My worst symptom other than the blanking out and major fatigue issues is massive mood swings (happy to reall nasty to suicidal an seconds) and paranoia about my poor old long suffering wife.

Given your youth I hope they pull out all the stops to help sort this out for you.

Medication changes can take a while to be effective I been told but always worth a go.

Best wishes and kind thoughts to you

Geoff.

[big-pharma]

I was on Keppra 1000mg per day, I believe to some extent that it dumbs people out, I was unable to think clearly, unable to perform work properly so I began reducing my daily amount to 500mg, then in 6 months, half it again to 250mg, now I'm halving to 125mg per day and along with a good nutritional diet (plenty of organic coconut oil, dried fruits and muesli, less meat as it has a high concentration of conductive metals and plenty of filtered water).

Id suggest reducing the amount of medication your taking as it counteracts all the unwanted side effects that come with these tablets. I personally think that mixing anti-epileptic medicine is more dangerous than taking them and taking high dosages is asking for trouble.

[Lj08]

Hi Jess really sad to hear that this is happening to you, do you find that this happens more around when your period is due? I get very forgetful can't remember correct words to use or things people have told me or if I have told them something that I have to tell I get the jerks twitches falling then the grandmal headache this happens all around the time my period is due and can last until I have the grandmal , as my fits are hormonal. I also take the same medication as you but I'm also on zonegran. Through other epilepsy sites I found they suggest taking b6 and magnesium with zinc and vitamin d maybe give it a go with the vitamins took about 6 weeks before I noticed the difference more energy and memory much better xx hope things go well with the consultant I have a daughter at uni and I would hate to think of her going through that you are brave young woman don't give up help your body after all you know it xxx

[Pauley]

Hi Jessica good luck with your course. I have read up on EEG's and by themselves they are not a diagnostic tool. If nothing is happening on the day of the test then results will be fine. As for the texts it may be your spell check. An example - I am new to seizures and have told some friends etc. My spell check changed 'I have been having seizures' to 'I have been having six users' may have been even more embarrassing too. Best of luck anyway paul 🌺

[AmyBadd]

A few observations from your post:

First of all, it is common not to find anything on an EEG. When I was first diagnosed I had an EEG and a CAT scan and neither of them showed up anything, although I continued having seizures. 

Second, you may have the same kind of epilepsy as me, which is called Juvenile Myoclonic Epilepsy. It is characterised by three types of seizure: tonic clonic (classic unconscious fitting), myoclonic jerks and absence seizures. This type of epilepsy often starts around puberty and can get better or worse as a person gets older. The main triggers for seizures are usually tiredness and hormones. I was on lamotrigine and keppra previously, but neither worked for me. Now I take epilim which works really well but is not good to take if you want to get pregnant (which I am). 

Also Keppra is known to mess with your moods a lot. My parents said that I was like a different person when I was on it. 

Finally, I was jus a bit surprised what you said about the sewing machine. I do a lot of sewing (just as a hobby) and I have never thought that it might be dangerous with regard to my epilepsy. Is it not controlled with a foot pedal? I'm sure you wouldn't press that down if you were having a seizure... Oh well, you should do what you feel comfortable doing. I have started to do a lot more knitting and crocheting recently, maybe you could try that instead?

All the best,

Amy

[Hidden]

Have you heard of migraine seizures it a rare condition that gets confused as epilepsy. As they are migraines an EEG comes back normal all test that are done for epilepsy come back negative but you having grand mal seizures off your with no medical backing. Just a thought happened to me given bad med that just made me worse until they gave me migraine medications.