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Are you newly diagnosed with epilepsy? Here are some things which you should know:
- Types of seizures - there are many different types of seizures. Most people only know about grand mal (tonic clonic) seizures, but there are actually many types from absences (staring spells with brief loss of consciousness - missing time), drop attacks (atonic seizures), myoclonic "jerks", auras and a whole spectrum of complex partial seizures where strange and mysterious experiences may be encountered. The more you know about the types of known seizures, the better you can communicate with your neurologist/epileptologist what is happening in your case.
- Your memory may not be as good as you think it is - Seizures can affect your critical thinking capacity and memory recall. If you are having uncontrolled seizures, it is a good idea to take someone who knows you very well with you when you see your doctor. They will be able to communicate details about your seizures that you simply don't know about (because they involve loss of consciousness). They can also help remember whatever the doctor says to you in the meeting if you don't have it all written down (and few doctors take the time to write everything down in a legible handwriting).
- The two most common seizure triggers are stress and lack of uninterrupted sleep. Most people do not get enough sleep. Many people with epilepsy don't get as much sleep as they think they do - they have sleep apnea.
- EEG tests - Can show epileptiform activity in the brain (confirming abnormal/seizure activity), but a negative result showing normal activity does not rule out the possibility of seizure activity. It just means it didn't happen in the short window of time that the EEG was recording.
- CT scans/MRIs - These are used to try and identify lesions/scar tissue in the brain that might be a focal point for seizure activity. If found, you might be a candidate for brain surgery.
- AEDs don't work like aspirins - they have to be metabolized in the liver and released into the blood stream. The body needs to maintain a steady blood syrum level of the drug to maintain therapuetic benefits. When starting or stopping an AED, you need to ramp up/down the drug slowly as the drug titrates into the blood stream. The level of drug in the blood stream is not necessarily a 1 to 1 correspondence with the amount of drug you ingest (ie. double the dose from 100mg to 200mg and your blood syrum could potentially increase 10 times).
- Get a pill box - If you have a prescription for an anti-epileptic drug (AED), you need to remember to take it every day. Missing a single dose could disturb the blood syrum level of the drug and put you in danger of having seizures. A weekly pill box (with dividers) can help you remember to take your pills (or if you have taken it if your memory can't always be trusted).