Diagnosed with epilepsy last week

Hi there,

I've been diagnosed with epilepsy a week ago, and to be honest - have no idea what to think about it yet! I've been living with Bipolar Disorder for almost 10 years now, just to be told that it could actually be Major depression linked with epilepsy. All the moodswings and irritation linking with epilepsy....at least, a kind of saving grace, was the fact that I've been on epilepsy meds for almost 8 years now - treating the Bipolar?! I find it so so overwhelming. Especially the fact that I've never had a seizure (or at least a visible seizure). I started getting terrible migraines again, and about a month ago I had this 'headache' for a full 15 days....I work in the Middle East and have gone from one dr to the next, they give me one look and say its high blood pressure because of my size (thanks to Seroquel and Lamitrogine) - the so called 'specialist' in internal medicine sent me for a CT scan - and it showed nothing. My BP was at that stage 160/100 - and the more I told them my BP spikes when I'm stressed out, the more they made me feel like a complete idiot. I then decided to come back to SA on emergency medical leave - went to my GP, and she almost had a fit when she heard about all the meds they tried to get rid of the migraine....giving me meds not supposed to be taken when you have asthma, meds causing migraines etc etc. Since it was so close to Christmas she went through a lot of trouble to find a neurologist who was still in Joburg, not on holiday. The called me Thursday morning and told me to go for an EEG and then the consultation....the dr showed me the EEG results, and explained it all to me. I'm sensitive to light, sound and even touch? I never realized that the pins and needles in my hands and fingers, the numbness I sometimes feel in one side of my face had to do with epilepsy. phew....so here I am. Not quite sure what to expect or what to think...Do I tell my employer, do I keep quiet? i dont quite know what to do next?! I know one thing: I want to come back to SA as soon as i can, and pray I find a job over here...

Anyways, thats my story for now....

C

6 Replies

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  • Glad to hear you have finally found out from a simple diagnosis here in S.A. I have had epilepsy for 39 years and am requesting what medication you are now on. Should you wish to befriend me to send messages to, please go ahead. At last you have a proper diagnoses,which makes life a lot easier to go forward. All the best.

  • Good that after all the challenges you faced that you have a diagnosis. Decision to disclose is a personal matter, which depends on the severity of seizures and also type of work that you are doing. Being in a foreign country also has other challenges as how do they perceive epilepsy? Take each day and educate your self about your condition as the more you know about epilepsy the better you will understand and make informed choices about your beneral well being. If you back in South Africa please make contact with one of our Branches as they can provide infromation and also supportive services. You can also submit your cv which will be placed on there database.

  • Hi guys, sorry for my late reply! Thank you for your support :-) What has happened since my last post? Well - I came back to the Middle East, had a 'bad' day at work and out of pure frustration handed in my resignation....now, the rest is really a sign that God is by my side. The same night I received a message on facebook to check my e-mail - there was a job in SA in my hometown...sent my CV the following day and received a confirmation that evening that they will keep it for me until my return to SA in July! How amazing is that? So, I will be going back to SA, I'm relieved that I will be in a place where I have my GP who knows me. As for the epilepsy - the new meds caused quite some havoc with my system for several weeks....all the possible side effects you can get for starting with new meds, I think I had them all. I had no appetite, felt nauseous, still had the headaches - basically, I just felt miserable. I stayed in touch with my GP back home, and she told me to be patient! Luckily, I lost some weight, and 3 months later it seems like I've managed to keep the weight down, I havn't bitten my tongue in my sleep for quite some time now. So, overall, I'm doing OK'ish I think. I"m still trying to figure out all kinds of symptoms and feelings, and getting to know my body now. I now do know that I definitely am very sensitive to light, instant headaches with flickering lights or bright lights....it's actually quite amazing. And my friends have been a great support too. I will miss them. BUT, I am looking forward to going back to SA after 10 years here in the desert....

  • Hi Anirack... The depression that follows with knowing you have epilepsy is also a factor. When you went for your EEG scan were still on meds at the time or did the doctor ask you for example two weeks before the scan to stop

  • Hi. No they didnt ask me to stop any of the meds since we didnt know that I had epilepsy when they did the Scan or tests. I'm still learning everyday...

  • God is always on our side. I am so glad you found a job and support here in South Africa!!

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