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Old 11-01-2018, 08:40 AM
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Playing with fire perhaps?


Playing with fire....by being unmedicated.
My seizures have never been well controlled.
So in May I stopped taking my topirimate and a year ago I stopped taking antidepressants.
I am more moody but life is no longer on mute.
My seizures have increased a little but I am used to them after 10 years with them.

Because of my combined diagnoses and the Dr.s favouring the psychogenic non-epileptic seizures aspect of my seizures I am thinking screw it.
If they ever progress to tonic clonics or loss of consciousness then maybe I will get proper treatment.
And have Drs look me in the eye again because my goodness stigma is alive and very well in the medical field.
That is what has always stung the most. And I have seen 8 neurologists over the years.

I do choose life. And my seizures do not define me.
I am a mother. Employed. A wife. A daughter, sister, friend... I haven't driven in 6 years because no matter what kind of seizures you have they can take away
your license. I understand. I understand it all.

I don't even have a neurologist or epileptologist anymore.

I leave it all to fate now.

Foolishness?
I have changed. I am no longer the person I once was.
But....time goes on.
We survive.

I am thankful for much.
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Old 11-01-2018, 01:35 PM
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Hi LJ-Bain,

I've had absence and complex partial seizure for 46 yrs. I had brain surgery to reduce the seizures and that helped but there's no way a person should take antidepressants and seizure meds at the same time because the antidepressant will stop what the seizure med is supposed to do. I took many different meds for yrs. then I had a DNA test done and found out I was drug resistant to all seizure meds out on the market now. It was then my Dr. put me on CBD (medical marijuana) and I am amazed at how that's helped me.
Years ago the neurologist I had at the time thought I was faking my seizures but when I looked into having brain surgery done the neurosurgeon found brain damage so deep in my brain that not a single test showed it, they never saw anything until they cut into me and this could be what's going on with you.
Since I'm drug resistant I've learned to take vitamin B6 and B12 each day which calms the nerves and instead of being on the ketogenic diet I take coconut oil and put it on my legs each day that in turn builds up ketones in my body and reduces the seizures. What's really helped me is this past Feb. I started taking 2 Tablespoons of apple cider vinegar with mother in it to lose weight and that has reduced my seizures to the lowest in 24 yrs. If you can stand the taste of vinegar the first thing in the morning give it a try and see if it works for you.
I know longer have a neurologist or epileptologist either because the Drs. told me they can't do anything more for me so I just have my family Dr. write my perscriptions out for me.
We have a little in common but please be alert that if the seizures start to happen more frequently that can lead into more brain damage like it did with me and I wouldn't want that to happen to you or anyone else. I wish you the best of luck and May God Bless You!

Sue
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Old 11-01-2018, 07:32 PM
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Hi Sue!
Thank you for responding.
46 years is a long time to deal with seizures. I am sorry.
I hope you are in a good place now with the methods you are using to help you. As good as you can be!
Regarding myself and any increase in seizures....that is my gamble. Mine have only been simple partials. If they are only psychogenic (which are no fun either and out of my conscious control) they will never cause me brain damage. So yay! But if they are not....time will tell.
I do not mean to be cavalier about it but they refuse to treat me or try other medications until they do change. I don't want brain damage but they will only try anything now if things progress.
Life sure does have a sense of humour! Haha

I too wish you well!
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