Hi all !!. I have between 1 and 4 sei... - Epilepsy Research UK

Epilepsy Research UK

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Hi all !!.

I have between 1 and 4 seizures a day. :-(

Beeson profile image
Beeson

I am 33 years old and writing from the UK in the hope of possibly gaining some progress/information in the treatment of what appears to be drug resistant epilepsy.

Since June 2010 I have been diagnosed with epilepsy due to suspected encephalitis. (However this was never confirmed and no autoimmune virus found )

The frequency of my seizures is between 1 and 4 a DAY.

The types of my seizures vary anything between conscious, semi-unconscious and unconscious. Left side, right side. Partial and generalised. They last sometimes 30 seconds, 2minutes 4minutes. Sometimes requiring oxygen and hospital treatment.

However, not photosensitive or absence types.

I have had all the scans available. All of which have shown no evidence of tumour etc.

There appears to be no focal point (which is why I didn't really want to look into surgery).

I am currently taking Lamotrigine, Zonisamide and Clobazam. All of which I have decided to slowly come off and see what happens because no progress has been made.

I would really appreciate any feedback or information on research from anyone.

I believe I am a bit of a special case!!

Thanks

16 Replies

Hiya i no exactly wot you are going through i have had encephalitis twice and never had a seizure in my life till 1999 & 2000 this virus left me with epilepsy that has slowly gotten worse and is drug resistant i cant tolerate any of the tablets your on as i found out i am allergic you may need to push for more kinds to try or maybe surgery thats my next step if you need to talk you can send me a message :-)

Beeson profile image
Beeson in reply to jules1973

I really dont fancy surgery.......

jules1973 profile image
jules1973 in reply to Beeson

Neither did i at some point but everytime you have a seizure your brain gets damaged and as you get older the harder it gets so here i am thursday morning and it will all be over lol

I am so sorry to hear this. I am also 33 and in 2008 was diognosed with epilepsy after having 2 grand mal seizures in my sleep then 1 in hospital. They immediately put me on medication & I have not had a grand mal seizure since. For 1 year & a half I was having partial seizures where I was awake & aware, I just couldn't speak or move & often my right arm would shake. They tried me on 6

different types of medication but all had horrid side effects & did not stop the partial seizures all except pregabalin. I am now seizure free & have been for 3 years. We think tiredness & stress causes my seizures. Do you mind me asking if it has affected your memory? I am sorry that I don't really have any advice, I really hope that there is help & support out there for you. There are lots of people on here though who are here to listen & that includes me

Beeson profile image
Beeson in reply to Carley

Hi Carley. My memory gets messed with pretty much every time I have a seizure (especially after the big ones ie 4mins ish and a slow recovery). I think the meds mess with your memory as well....as in most medication does. Although some bits are coming back slowly. Long term stuff. However, there are nasty bits which I would prefer not to remember but do pop in if I try. However, I dont remember getting married, my daughter being born, certain other bits which I think may have help cause the stress factor bit?? dunno. Any way I feel a bit naff. Are u working now? cus Im not and I used to sea trial super yachts :-( ah well......Grrrrrrrr

Paul72 profile image
Paul72 in reply to Beeson

check your pm Daz.....when you feel up to it.

jules1973 profile image
jules1973 in reply to Paul72

Hiya paul surgery is all over and i am glad it all went well no seizures and i hope it stays like this :-)

jules1973 profile image
jules1973 in reply to Carley

I have no memory all the test i had to do for my memory i failed and its all due to the seizures and enceohalitis it has caused some brain damage i had to get my right hippocampus removed on the twelth december in the hope the seizuress stop and my memory improves

Oh dear, it's really tough isn't it. Yes I am working but was off work sick for a year & a half. I am a primary school teacher & honestly thought I would never return to the profession ever again or drive again come to think of it. I became v depressed & found the adjustments v difficult to handle. I has councelling which helped me tremendously. Now I work 3 days a week as a teacher but doubt I'd be able to do anymore. I get v tired which I think is due to the medication & I tend forget things. Short term things, I'll go to say a word that is in my head but a different word will come out or I forget names this is when I know I have to rest. People don't understand that if I do an activity during the day I have to rest & if I am going out in the evening I have to rest during the day, I can't risk having a seizure again. Sometimes the tiredness just hits me & I have to go home, hate it. Luckily lights do not effect me so my form of escapism is going to live gigs, think we all need something in our lives to help us escape even if it's for a short time. Good luck with everything & if u feel you're not getting anywhere keep on at your consultant until they help you

You seem to be coping fairly well hun. I do get fairly tired after each one depending on nasty it is. I'm gonna message my "consultant" again on monday cus I just checked my diary and theres a nice pattern which has appeared over the last few years. Massive difference in no. of seizures and times. Pretty much most seizures occur between 2 and 4:30 pm. Do you know of anyone with similar patterns? Im probably gonna ask everyone else on this forum.....which makes me quite annoying probably.

AmyBadd profile image
AmyBadd in reply to Beeson

It's common to have patterns of seizures. I had most of my seizures during the years I was at high school, but luckily for me they didn't tend to occur during the day, so (thank god) it never happened when I was in school. I think because my main trigger was tiredness, it would mostly when I first woke up or when I was tired in the evening.

Beeson profile image
Beeson in reply to AmyBadd

Hi ya. Yeah sounds about right. Although I do get loads (normally quite short) on waking up or they wake me up??

My daughter used to have them all thru the day, every half hour, now she only seems to have them when she's sleeping...anywhere from 2am to 6am

Beeson profile image
Beeson in reply to kittycat671

may I ask what meds shes taking? I really dont know if any work or just confuse things?!!?!?

I too had encephalitis and it left me with epilepsy abscence seizures which became drug resistant i now have had surgery for this 2 weeks ago i am currently taking tegretol and zonisamide all the rest were too strong or i was allergic to especially lamotrogine what i would suggest is going back to the neurologist and they might change the tablets or you could opt for surgery just like i had its not easy choice to make but i had too as every year i got older the harder it was getting good luck in your choice

Hi Beeson, I have epilepsy as a result of viral encephalitis, which I had 3 years ago, epiliepsy started 1 year ago and am just dealing with it, I found the encephalitis help line really helpful, they sent me lots of information which I was never given when I had the encephalitis which would have been really helpful at the time. My life has changed as a result of both, I lost a lot of my memory initially but some of it has come back but I now have to write everything down as my short term memory is rubbish!! I hope you get some help, I'm in the process of trying different medications, been on Kepra for a year but that didn't really do much so just introduced an add of LAcosamine only on my 2nd day of this but feeling rubbish so hope in time the side effects fade and it has some effect on the seizures which are tonic clonic. I wish you well, feel free to message me.

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