new to this, and to epilepsy.

[wanderlust]

Hi everybody, my name is Seo and I am twenty years old. I found out I had epilepsy about a month ago.

I am really lucky to have a great network of family and friends who are very supportive with helping me adjust to having epilepsy, and I appreciate them a lot, but I also think it would help to talk to other people who go through things similar to what I do.. which is why I came here.

My first seizure, a generalised tonic clonic, was earlier this year. Since then, I have had one more generalised tonic clonic, and also a partial seizure. I also occasionally have minor bad turns where my vision distorts for a couple of seconds and I can't focus on anything but I don't know if this is related to epilepsy. I have just started taking Lamotrigine and am trying to be optimistic about it all - but at the same time, it's a bit hard to get used to as well.

I guess the thing that I am finding hard about having epilepsy is feeling isolated from my friends. I am not allowed to drive at the moment, which is frustrating as I live a little while away from most my friends, but more than that, it's just the constant fear that if I don't sleep enough or if I stress too much, I might have a seizure. I guess it will all improve in time but I feel lonely, because I know this fear isn't something my friends can really relate to. But, I'm glad I found these forums, because they are helping me realise I am not alone with what I go through, and what I feel

 

[CleptaK]

Hi Seo, welcome!

Epilepsy is a big thing to come to terms with and so it's understandable that you're feeling a bit bewildered. It's great that you've got family and friends to help you through! Managing the changes in lifestyle, like not driving, will become easier over time. Is public transport readily available in your area?

This forum is a great resource - it's fantastic knowing other people are out there.

 

[Nakamova]

Hi Seo, welcome to CWE!

I think that the time right after a diagnosis of epilepsy can be very stressful due to the unknowns -- not knowing what is "normal" to feel, not knowing what to watch out for, not knowing what sensations might be caused by the medications as opposed to the seizures, not knowing how other people are going to react... One thing that can be helpful is keeping a seizure diary -- in it you can track not only seizures, but things that you're not sure about -- the "bad turns" that you mention, for instance. If possible you should also record physiological information -- sleep patterns, diet/nutrition/hydration, exercise -- as well as any other stressors (mental, environmental, etc.). In this way you can potentially isolate and avoid what may be seizure triggers.

I've found that being matter-of-fact with my friends about epilepsy works well. I present it as being a bit like having an allergy, or a disorder like asthma that requires heightened vigilance.

Best,
Nakamova

 

[wanderlust]

Thank you for your welcomes and your advice the three weeks that have passed since finding out I have epilepsy have been some of the most challenging and lonely weeks of my life. It is such a comfort and a relief to know I'm not as alone as I feel.

 

[gigi]

Hi Seo:

Nakamova said it best, and welcome to the site. I hope you can find useful information, as well as perhaps some inspiration. Take care of yourself, and remember, like so many other ailments/disorders - denial can be your biggest enemy! So, climb on board and be proactive. HUGS. op: