Diagnosing and managing your neurological disorder should be a partnership between you and your neurologist. Much of this partnership depends on sharing relevant information about your health and its history.
Just like important business meetings, doctors’ appointments (medical appointments or appointments with a doctor) need preparation. Don’t think that you are overstepping your boundaries – it is respectful to come prepared to an appointment.
You can get the most out of your doctor visit if you are fully prepared. Most people visiting a neurologist want and need to have the following questions answered:
- What type of epilepsy/seizures do I have?
- How will my epilepsy affect my health?
- What is the treatment and what will it do?
- How will my epilepsy affect my daily life and activities?
- What safety precautions should I put in place?
You may have heard of the term, ‘There is no such thing as a stupid question’! Likewise, there is no question about your health that you should be afraid to ask your doctor or neurologist. If there is something that is potentially embarrassing, remember that your doctor has seen and heard everything you could possibly say (and probably much worse).
When answering questions, you and your neurologist will be exchanging a lot of information. It often helps to have a family member or friend with you to listen, take notes, or ask questions. (Epilepsy Queensland may be able to assist you with this.)
The following are some tips and guidelines that may help you to be prepared for this appointment.
What do you take along with you?
- Your referral from your GP.
- Any notes you may have from your GP or other doctors you may have seen.
- Any test results that you may have:
- CT scans
- EEG results
- MRI results
- Blood test results
- Other specialist reports
- Any recordings of suspicious events
- A list of all the medications you are currently taking and those you have taken in the past along with the dosage. (Note: especially why they were discontinued!)
- Your list of questions. Sometimes when you come face to face with your neurologist, other things can become a distraction and you may forget the most important question.
- Do you need a prescription that needs to be written?
- Do you need a travel form to be completed by your doctor?
- Do you need a certificate for work or for school?
- Do you require an updated emergency management plan for school/daycare/respite care?
- Bring your seizure record diary, with all the symptoms that concern you. Note how long each has occurred and rank its severity – from 0 for no impact to 10 for devastating. Note also what makes a symptom worse.
- Attempt to video record any new events, if possible (i.e. mobile phone, camera/DVD) and remember to bring them to the appointment.
Other points to remember –
- Make a follow-up appointment, if necessary.
- Find out when your neurologist will get back to you with your test results.
- If your neurologist prescribes medication, make sure you fully understand:
- What has been prescribed and what it should do for you.
- If there is a generic substitution that is acceptable (it is not recommended that you swap between generic and brand name medications.
- Exactly when and how you are to take your medication(s).
- The potential side effects of the medications (sleepiness upon initial commencement of an anticonvulsant is very common) and what to do if they occur e.g. take photo of any rashes that may appear and/or have GP review as soon as possible.
- What to do if the person vomits within an hour of having medication.
- What to do if accidentally missing a dose.
For more information on managing your medication, see Epilepsy Queensland’s fact sheet ‘Tips on taking your medication effectively and safely.’
This information sheet has been compiled by the Client Services Team at Epilepsy Queensland Inc. For further information please contact the team on 1300 852 853 or 07 3435 5000.
Although every effort has been made to ensure accurate and up to date information is provided, Epilepsy Queensland Inc and its advisors cannot accept any liability in relation to the information provided. It is strongly recommended that you discuss any information with your doctor or other relevant organisations.