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Hi, thank you for your response. My daughter was having auras with deja vu feelings. Sometimes the deju vu feeling was not pleasant and/or was associated with a memory. Sometimes a metallic taste in mouth or strange feeling in stomach. In the past, she would sometimes forget where she was or what she was doing for about 10 seconds but was still able to talk and let it pass. Now, she only has small auras (not even positive they are auras) but without taste and she doesn't forget where she is. We don't know if the change is from her change in lifestyle recently. She has been working out, cutting out sugar, getting more sleep, meditating and taking CBD oil. Her Doctor kept increasing her dose because he didn't want her to have any type of aura but she is still having the same feeling. Now, we are thinking she was not having auras and he was increasing her dose when he didn't need to. She is experiencing more side effects and wants to slowly wean back slowly to a lower dose. My daughter has bad anxiety and a lot of stress in her life right now and sometimes has panic attacks that are similar to signs of an aura. I'm going to look up prodrome, thank you for that information.
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My pleasure @kelspal !!!
The experience with auras your daughter once had is similar to mine when I was younger and just had auras. But with time, seizures can change, as I have experienced myself and have also read. Medications can also change a seizure pattern.
AEDs are a class of medication with a high incidence of side effects. And usually, the higher the dosage, the stronger the side effects. I can well understand the pain your daughter is going through.
My current doctor says the challenge is finding a medication and dosage that brings us more benefits than harms. If the current medication and its dosage are causing stress and anxiety to your daughter, I understand that the current treatment might be exacerbating those triggers to seizures. On one side, it helps to keep seizures away from your daughter, but on the other side, it creates conditions that increase the chances of a seizure. I called that a looping process; let me try to explain it with a personal experience. In the 2019-2020 period, I was on an AED that has lowered my immune system, resulting in fevers and several infections. On one side, the medication was protecting me from seizures, but on the other side, it was also putting me in situations that would trigger my seizures (lowering my seizure threshold, as we say). As the current dosage did not control all my seizures, my doctor wanted to increase the dosage, which I did not agree with, as I was already having a very hard time with the side effects. What I did at that time: I checked for a second opinion and then changed doctors. I ask myself if it would not be interesting for you and your daughter to check for a second opinion? And if you do it, I believe it would be best to do it with an epileptologist rather than a neurologist.
Yoga, meditation, exercising, and certain diets are great alternatives to add more quality to our lives and do also help to increase our seizure threshold. I myself practice hatha yoga, yoga nidra, take CBD oil, exercise (Pilates and Tennis, which is known to be a sport that is excellent for brain health) and take care with my diet (I follow more the Mediterranean diet).
Wishing you and your daughter better days with a treatment that is effective and has tolerable side effects.
All the best!
Chris (@santosha)