How epilepsy didn't change my life

[klyndywel]

I am 34 now but was diagnosed with epilepsy at age 12 but since age 15 I never SUFFERED from epilepsy, I live with it. Sure, I can go sit in a corner and feel sorry for myself but what would that help. I'm not disabled...I'm special. I'm not saying my life has been easy over tha past 22 years since my diagnoses but I also didn't give up on life either. Career and job wise it hasn't been easy. unfortunately most people are (not naive) just not informed enough regarding epilepsy and therefore they fear it. I am trying my best though to inform as many people in all walks of life to properly inform them what epilepsy entails and that contrary to popular belief that it not contagous, fatal or disabeling. I have for the past 22 years been living a quite normal life an even got married last year. and more recently I have taken up kite surfing. Well I stay in Cape Town so surfing is the local pass time.

[Tdevilliers]

Hi - I agree, living with epilepsy can have its challenges but I also never suffered with them, I just accepted the condition and moved on. I have had epilepsy since 10 years - now nearly 52. However, some people are more suceptable to having seizures simply due to subconciuos stress and anxiety of the condition. Understanding ones condition, keeping a detailed diary on events i.e. looking back over the 24 - 48 hours prior to the seizure may give identify a pettern, which helps one manage it better and helps the neoriologist in diagnosis.

I am on the national Board of Epilepsy SA and do a lot of advocating on behalf of people with epilepsy. I am an engineer for City of Cape Town and have been invited to talk to their staff next Friday - National Epilepsy Day, which is a great opportunity as they employ 28 000 staff all in all so quite a number probably are affected.

Otherwise you seem to be handling it well - keep up the kite surfing - I used to do long distance open water swimming and have always been a mountain biker and cyclist, which I continue to share with my wife.

Keep cool - Tim

[tarryn1 in reply to Tdevilliers]

Hi Tim,

I would love to hear your talk on Epilepsy next Friday(Epilepsy day).would I be able to?

Please reply,

Mary

[stellan in reply to tarryn1]

Hi

I leave in Pretoria have been leaving with epilepsy for four years now. I leave a normal life. Please advice me on how to become a member of Epilepsy South Africa and change life of people leaving with epilepsy in rural arears.

[tarryn1]

Thanks for your fine words on Epilepsy.I am a sufferer to years and live on chronic medication.I have done since I was 14 years.I also live in Cape Town,am married with 2 girls aged 26 and 24 years.

I would love to meet up with you.My cell is 083 703 3112.

Mary

[Tdevilliers]

Hi Tarryn

Although these talks are arranged for staff wellness, I am sure it should not be a problem you attending. There is a talk from 9:30 - 11:00 on Diabetes and followed by my talk from 11:00 - 12:00. I have invited Epilepsy SA Western Cape - not sure yet if they are attending. These talks take place in the Main Council Chamber on the 6th floor of the Podium Block of Cape Town Civic Centre.

I have no problem meeting with you - if you are able to attend we can chat then.

Regards Tim

[epiclectic]

Hi all, I was diagnosed with Epilepsy after a car accident when I was 14 years old. I was prescribed Tegretol at the time; after experiencing adverse side effects I discontinued the use of any Meds. I am 32 now and had my first "concious" seizure two weeks ago. I have been to see a Neurologist and have been prescribed Epitec 100mg. I started out with 25mg for a week, upped dose to 50mg and will increase to 75mg next week untill I reach 100mg the week after. I am responding well to the meds but have come to realise that stress is a direct cause of triggering a "lingering" or even a full-on seizure. I take Azor 1mg twice daily and a sleeping tablet at night (Epitec keeps me awake ?!?)

All in all I feel much more in control but feel tempted to phase out the meds once again- I don't currently have the luxury of a medical aid so can't habve all the fancy scans and tests done... What would your opinion be on me rather controlling my stress levels or should I stay on Epitec?

Please voice your opinion- I am rather clueless!

Thank you all!

EpicLectic...

[tarryn1]

ElpiLectic

I too have had Epilepsy since I was 14.it started out as Petit Mal and has gradually got worse.I am on chronic medication.

I changed to Tegretol before I had my children.All was controlled for 26years.Last year the seizures came back with a vengeance.I was hospitalized 2x last year once with low sodium levels which caused seizures and once due to an anti-inflammatory I was taking for an injury.

The prognosis indicated that the Tegretol was not covering me sufficiently--my body had slowly become immune to it?

I was put on Epitec 300mg and 750mg Redilev per day.I suffered too from insomnia in the beginning.It was a huge side effect for me.However in the last 6 months the insomnia has almost abated.

I suggest you stay on Epitec or ask your Neurologist for another medication as sleeping tablets can have an addictive effect.

You are taking a very low dose compared to me.I would stay on it just in case your body goes through a stressful time again and you have another seizure.Medication will hopefully prevent this.

Stress seems to be a huge factor in bringing on seizures.

Since you have no Medical Aid,my advice is that you see a neurologist at one of the public hospitals.Years ago I visited GSH on many occasions and the help there was fine.

I hope this is an answer to your question.please feel free to contact me again if you need to.

Stay well,

Mary

[Hidden]

Having epilepsy for 39 years has not stopped me living my life... Beginning at the age of 16, I am now 55 years of age... I advocate lots on Facebook and Twitter... Medication keeps me well controlled and thank goodness, life goes on! Stay positive... Do not be negative!

[VallyM]

I have bin on tegretol for two three years not, my problem is I have sizures now and then , am a nurse at a public hospital a real dnt knw wt to do, I always have headche,tired, I forget number.

[mgm2103 in reply to VallyM]

hi I'm a new member. also living with epilepsy since childhood. I'm on Epilizine 500mg CR in the morning and 700 mg CR at night. I only experience it whist asleep and than the wife and children must experience this ugly thing. I always nearby bite off my tongue and kick, seize and do the "dance ". My body is always very sore and tongue is like biltong. I'm 49 yo now and it always seems I'm losing bits of my memory after each and every episode. Please refer me to a good specialist in Pta. Thnx

[kenpachizabuza in reply to mgm2103]

Hey I also had epilepsy from childhood when I was 9 and now I am 28 was on Tegretol but didn't work so a Neurologist from Cape Town put me on Epilizine 500mg CR one in the morning and one at night the I started getting them in my sleep and my Neurologist gave me epitec 100mg one at night with my Epilizine and so far it's been working very good

[NanaMay]

So encouraging!! I also had seizures when I was younger (high school) and they only returned last year. It is a testimony that you can live fully and explore life fully. So, are you on any meds or not taking any at all?

[justdocoffee]

thank you for encouraging story. i agree that epilepsy cannot stop you from living normal life. i was diagnosed of epilepsy 25 years back and i didnt stop living life as normal. yes people can tell you you cant do this and that but what are you telling yourself? i continued following my dream and today i am a practicing social worker and driving my own car.

[ALESSI]

Well done.I was diagnosed at 25 and am now 53.I used to be a legal advisor but my brain became so slow from meds that i just couldnt cope and keep up...mistakes and mixing words and phrases...it is disabaling....i cannot find employment and i am at witts end....