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Taoist teachings say that to know is not to know, and that when we finally realize that we do not know is when we truly know.  I don’t know about that, but I do know that when it comes to temporal lobe epilepsy, to know is to understand and to survive.  It has given me a sense of empowerment and has prevented me from going insane.

Detailed records and a great familiarity with what was going on with me were the best tools for diagnosing my condition.  My extensive record keeping has been central to the medical and personal maintenance in the years since the diagnosis.

If there is one thing a person with temporal lobe epilepsy takes away from reading this, it is that you must have an open, complete, and honest relationship with your healthcare providers.  Write down what’s happening to you, particularly your seizures, detailing when they occur, the frequency, the severity, how long they last, and what was going on with you at the time.  Make a list of all medication and supplements you’re now taking or have taken.  And have someone close to you, who observes you on a daily basis, keep notes and share them with you and your healthcare provider.

To be honest, your family physician probably is not your key provider, but your doctor can direct you to a neurologist and a psychiatrist.  These three providers, along with a pharmacist, clinical psychologist or social worker, and a support group of other TLE patients, make up your team and will give you the best chance to survive your life in Wonderland.

A pharmacist?  Absolutely.  People with TLE many times have problems with their medication.  The online forums are full of stories from people who are allergic to their medications or who have adverse reactions to the drug cocktails prescribed for them.  A relationship with a pharmacist is amazingly valuable, because you can talk about the other medications you’re taking, or have taken.  I know my relationship with my pharmacist in Salt Lake City saved my life on more than one occasion.

It’s imperative to have a diverse medical team working with you because TLE, as with every neurological condition, has a psychiatric component.  At the risk of alienating the entire medical and psychiatric professions, it’s a concept that escapes many professionals treating temporal lobe epilepsy.

Treating temporal lobe epilepsy is as much an art as it is a science.  It requires ability on the part of the doctor and understanding on the part of the patient to find the right balances among medication, psychiatry, and interaction at work and at home.  How much do you push yourself to do things that aggravate your TLE before you give in or give up?

The psychiatrist who diagnosed me is the only person to use the term temporal lobe epilepsy with me.  Neurologists don’t use it.  They call it complex partial seizures, and most of the ones I know don’t want to talk about the area of the brain that has the seizures.  So, if you take it from their standpoint, “you have a complex issue of, well, you know, you have these symptoms and it’s all part of the same thing.”  The result is that you’re treated only for part of your condition and not the part that sits on your emotions and your memories, not to mention your creativity.

Recommendation for the ideal treatment takes the form of a team approach, as I mentioned earlier. This includes a neurologist to address the neurological aspects, a psychiatrist to address the mental and emotional aspects, a pharmacist to monitor the drug interactions, a clinical psychologist or social worker to help with living with the condition and with social and professional interactions, and a support group to let you know you’re still a human being.

Here’s something that may shock you.  Right up to this day, no one has put me in touch with a TLE support group.  Go figure.  Maybe doctors think it’s not their place to do it, but one would assume that with conditions such as epilepsy, where people need support and strength, doctors would have such information readily available.  They have it for other conditions, such as HIV/AIDS, alcoholism, even sex addiction.  I had no one.  I was living back in Texas for two years before I discovered a TLE support group existed back in Salt Lake City.

It’s just another failure, and I hate to use that term, on the part of care givers.  Oversight might be a better term.  But, it’s an oversight with unhappy consequences for us.  I was devastated when I learned I had temporal lobe epilepsy.  It took maybe a year or more to come to terms with it.  It was as if I had learned I had leprosy.  That’s not an exaggeration.  But even that’s not a good analogy, because leprosy has a cure.  I mean, if you knew, and I did, how society viewed epileptics, even as late as in the last half of the twentieth century, that we were little more than mentally retarded and should be kept from marrying in most of the states in this country, it would make you ill.

My children used to complain about me always using the term TLE or epilepsy.  My younger daughter really came down on me one day, prompting her sister to explain that I’m doing it to desensitize the term, much in the same way some segments of the African-American community use the “N” word.  The more I say the word, the easier it is for me to accept my condition.

So, maybe doctors have their own reasons for not recommending support groups, but I disagree from a patient’s point of view.

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