When you were first diagnosed with epilepsy what research did you do? Treatments, alternative treatments?
I want an app for my iPhone that covers epilepsy from diagnoses, types of seizure, treatments etc.
Any recommendations? For iPhones, books or e-books. Thanks in advance ✌🏻
I constantly take a book with me when I leave home to go somewhere. As my memory is really bad. With a lot of things in there from my home address to my daily medication.
I wear a medical alert bracelet. On the back beneath my name (first and last)I have the word Epileptic, beneath that my husband's first name with our home phone number, then his cell phone number. Below that I have my neurologist's name with the phone number of his office. EMT's know to call and if I have had a seizure while out on a walk, the EMTs will contact my husband first, then the Doctor's office. They won't take me to the emergency room for a seizure.
Something I have learned in the past is the keytogenic diet,/avoiding things that will cause seizures to happen, foods ex caffeine etc. learned a number of the triggers for seizures, not getting enough sleep, I have the vagus nerve stimulator, don’t forget to take Your medication. Eventually You will find the right combination of medications to take that will work.
The first treatments were really tests. The first test was an eeg, I have had at least 5 of those not including the one that was 24 hours long and one that was a week long. No eeg has ever really worked for me for some reason. Then I had a CT scan, that test was to obtain more information. Then the MRI tests were created, that was for more information also. After waiting just taking medication the Depth Electrodes Test was created. (look that up for details). I found no other surgery was possible. So the last thing that is really a treatment is the Vagus Nerve Stimulator. I have one now, but the battery is dead and it is old. I mean old because a new and improved one has been made to replace the one I have now. I carry medication where every I go, it is small stainless steel container that top screws off. My Dr.s card is wrapped around the outside of it, so if someone sees it they know what that medication is for, because the card has Neurology, written on it.
I have to agree with carrying the list of medications and emergency contact information. It is always a good idea to have a couple of copies in your pocket!