Diagnosed With Epilepsy: What Should You Do?

Coming to terms with a diagnosis of epilepsy is not easy. You may feel shocked, or that the doctors have made a mistake. It will not help if you have the brisk kind of GP who considers counseling to consist of telling you that you must now give up your driving license and wait until you have been seizure-free for 12 months before being able to reapply - this has happened.

But, you probably need to discuss the diagnosis with your doctor, as there may be aspects of it you don't understand or agree with. It can be hard to take everything in at once, especially if you are in a state of shock at the diagnosis. It is worth getting the facts as clear as possible right from the outset, as many people feel rather half-hearted about asking basic facts once they are enrolled in the medical system and installed on medication. Diagnosis, a key time for finding out about your epilepsy, is often missed by people. One survey by Epilepsy Action showed that as many as one third of patients with epilepsy did not know what type of epilepsy they had. So, now is the time to ask questions, either of your GP, an epilepsy specialist, or, if you have access to one at your treatment centre, an epilepsy nurse specialist who is expert at understanding the particular concerns of the time. You are bound to think of questions you want to ask after your initial doctor's appointment, so it may help to make a special further appointment to find out what you need to know. You might also find it helpful to contact one of the epilepsy self-help organizations such as Epilepsy Action, or the National Society for Epilepsy (NSE).

Talking with your doctor or an epilepsy specialist nurse is also obviously vital if you disagree with your diagnosis and want to challenge it. This can be done at GP or at specialist level. If talking to your usual GP gets you nowhere, you do have the right to a second opinion, either from another GP or - and this may be preferable - from a specialist in epilepsy. Ask your GP to refer you if he or she has not already. If you have talked to a specialist and are still not happy, then it is possible again to seek another opinion at specialist level. Again, you can ask your GP to refer you. It may help if you have a specific idea of where you would like to go for a second opinion, and a national epilepsy self-help group may be able to give you advice about epilepsy centers. Bear in mind that this may mean more weeks or months of waiting, though you may feel it is preferable to remaining in doubt as to whether the diagnosis is right.

Asking questions
You may need time in which to absorb your diagnosis or you may need to know as much as possible straight away. Either way, it is a good idea to find out as much as possible about your epilepsy, medication and any possible side effects - uncertainty causes stress. You may find it helpful to make notes of the answers. Common questions include:

1.Exactly what type of epilepsy do I have?

2.What other medications can I take?

3.When do I take my tablets?

4.What happens if I miss a dose?

5.Can I drink?

6.What might trigger a seizure?

7.Do I need to consider other lifestyle issues such as stress?

8.Could I have information about counseling to discuss new lifestyle issues which have arisen, such as a new relationship or bereavement?

9.What about pregnancy and breastfeeding?

10.Can I drive?

11.Can I think about decreasing my medication?

12.What should I do if I need to discuss my treatment between appointments?

Research by Epilepsy Action has shown that women in particular often feel they are not given enough information, and Epilepsy Action suggests the following questions you may want to ask your doctor. Will my treatment:

1.affect my menstrual cycle?

2.interfere with my oral contraceptive pill?

3.have side effects (e.g. weight gain, unwanted hair growth, tiredness)?

4.need to change if I plan to start a family?

5.affect my ability to conceive a child?

6.affect my unborn child?

Source: The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet?by John Mark Freeman, Millicent T. Kelly