Hi, thanks for your response. I'm glad to hear that the GP has offered to arrange more support. It is frustrating when they make a diagnosis like this and then just send u on ur way, so to speak. Have to tried to search for any real time support groups in hospitals? Is ur daughter being seen by a Neuro, if so, ask the staff if there are any support groups which could be useful to all of you.
Don't worry about tests coming back as normal, most of them do. I've had a normal EEG, the first one. Then I had a sleep deprevation EED, that was normal to. Just recently I've had one for a week and won't know the results of that till Dec. These tests are very limited as the purpose of them is to catch u having a fit and so it can be recorded. I think with the week long EEG I had they can look for underlying brain signals which are epeleptic like. Speak out to youtr GP explaining this that of course the tests won't show anything as she did not fit during it. My first MRI was just outside the normal and I've had a second one, again, waiting for the results. It's good for ur daughter to be taking more responsability. I know it took me a while to accept the diagnosis and now not being able to drive it felt like my independence was taken away, it hasn't really, just take twice as long on the bus, lol. I to have had to make some life changes, slowing down, making sure I have enough rest ect..... it's a hard thing to do but fits don't feel nice as I'm sure your daughter will agree so any lifestyle changes to help prevent them is a good thing. They WILL find the right dosage, it took nearly 7 months to get mine under control. Alos finding the right med or med combo can take time as each person is different. I was constantly worried about having fits out of the house, on the bus or on the street but I think the more anxious u get about it the more likely it could trigger. I don't have any warning signs either, does your daughter? The braclet certainly helps me, it has contact information, name, drugs and dosage on it so if anything were to happen, the information is there. I know its not easy but try not to worry, this can all be controlled. As a parent I know the worry doesn't go away, My mother has become overprotective of me and I'm 30, lol. We just constantly check in with each other and if she hasn't heard from me for a few days then she comes over. My friends are the same. Everyone in my life knows the situation and what to do if I were to fit with them. Your daughters life doesn't need to stop but maybe it might be worth encouraging her just to be more sensible and give clubbing a miss at the moment coz the bright lights can also trigger a fit. It's not forever, she could go back to her clubbing, just when it's all under control. Sorry for my essay. Hope some of it helps.
Take Crare