Complex Partial, Not Very Severe-Just Live With Them

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tateu

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I was diagnosed about 20 years ago (at age 19-20) with Complex Partial seizures. Currently I am not seeing a doctor and I am not on medication (I was, back when first diagnosed). My seizures are, what I consider to be, infrequent and have minimal impact on my life and I have chosen to just let them continue to happen.

I am curious if there are many others who have done the same?


And a quick history of my seizures:

I don't remember much about the seizures I had when I was first diagnosed except that I would see things superimposed on top of reality, kind of like "augmented reality" running on today's smart phones. I would most often see dinosaurs and I remember liking the experience. My parents made me see a neurologist. At the time, I was in college and still living under my parents' roof, otherwise, if left to my own devices, I probably would not have seen a doctor.

I was on medication for a few years, I don't remember which one but I know it was just one medication, 7 pills a day I think. I stayed on the medication for a few years and was seizure free. At some point, I stopped going to the doctor and stopped taking my medication, cold turkey.

Cut to about 4-5 years ago, probably 14-15 years seizure free and 12-14 years medication free, they started up again. I don't have the augmented reality visions anymore...symptoms are usually a strong sense of déjà vu of...something...I don't know what that "something" is, I just feel that "something" has happened before. I usually get very hot, a little light headed, sometimes nauseous, sometimes there is a strange taste in my mouth. They only last for a minute or two. I prefer to withdraw and let them pass but I have continued working, carried on conversations, etc. while they occurred. There has only been one time, that I know of, where I was unable to communicate. I was with my parents and tried to say something to them. I heard myself say exactly what I meant to say but all they heard was gibberish.

Sometimes I have several in a short period of time, sometimes I have gone 6 months without one. I had 6 in one week last October but then none for 2 months. I've had just one each month this year. I hate the fact that I have them, because there is evidently the chance that they could eventually turn into something worse but, for now, that hate is not enough to make me do something about it.
 
Hello tateu,

Warm welcome to CWE.

You had a long run seizure and med free, that’s wonderful.

I think one of the dangers could that seizures could progress. My Son has E not me but I have seen it said untold times on CWE, if your brain gets used to seizures it may well learn that behavior and take that route more and more often.

My son (26) had Simple and Complex partial seizures that progressed to T/C and only when T/Cs hit was he diagnosed with E. His overall seizures are not fully under control (though they were for quite some time) despite taking the meds but we are working on that, he is otherwise living life, at college and works ...If a T/C was to hit you by surprise say when you are driving, that would be a real concern.

It’s all about keeping you safe..Would you not consider discussing with your doc/a neurologist?
 
Hi tateu, welcome to CWE!

I'm glad you've been med-free -- as I'm sure you know, meds can bring their own kind of distress to the brain and body. One potential risk of leaving seizures untreated is that they can eventually progress in frequency, duration, and kind. This doesn't happen for everyone, but just to be on the safe side you might want to keep a seizure diary (if you don't already) where you track your seizures and note what goes on before, during, and after them. If you track other details as well, there can be the added bonus of identifying potential seizure triggers, and then learning how to avoid them. The most common trigger is fatigue, but they can also include things like food sensitivities/allergies (MSG, aspartame, gluten), metabolic issues (low blood sugar, electrolyte imbalance), illness/infection, fluctuating hormones (thyroid, estrogen), emotional stress, and environmental stress (flashing or fluorescent lights, sudden sounds).

You might also be interested in non-medication treatment approaches such as diet or neurofeedback. Good places to start are here: http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments and here: http://www.coping-with-epilepsy.com/index.php?p=eeg-neurofeedback

Best,
Nakamova
 
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