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Hi there..

So let me try to get the hang of this & try not to be so shy while I'm at it. lol
I've been doing this seizure thing a few years officially. Besides, the febrile ones way, way back as a baby, I didn't have a tonic clonic until 2012...I had 3 that day. Anywhoozles, I had never known that the fire only I could smell for so very long or the lighting up of cigarettes that weren't there and the lost morning getting ready for work not long before that day.
Anyway, meds keep some away...but not all. I'm lucky that with all I haven't had a tonic clonic since 2014. Yet the mixes of cocktails haven't worked completely. My last one has sort have seen the best results along with my gluten free diet, but damn if I'm still not having breakthrough seizures at night...not as many, but they happen. And now let's throw in some happening during the day for fun. *woo*
So now I'm at the surgical options. Or switch meds options because I've been on one of them too long and I know it. I know what I'm going to do. Now I want my brain to cooperate...unlike it has been cooperating.
I can't think of anything more right now..
thanks for listening
marianne
 

Nakamova

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Hi Marianne, welcome to CWE!

Make yourself at home, and feel free to ask about specific meds or procedures that you might be considering.

Cheers!
Nakamova
 

CathyAnn31

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Hi Marianne-

This is a wonderful group, you've definitely come to the right place. Jump right in, ask questions, meet like-minded folks who can understand what your going through.

Glad you're here. :)
 

Porkette

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Hi Marianne,

Welcome to CWE! Everyone here has been a great help to me and I've learned a lot from them.

It sounds like you may be having simple partial (aura) seizures when you smell the different things you mentioned. I've had that type along with absence and complex partial seizures for 47 yrs. Just like you I've been on many different seizure meds and then I had surgery done to reduce my seizures. One thing you should do if you haven't yet is start keeping track of your seizures get a calendar and write down what time and type of seizure you had by doing this your Dr. may be able to see a pattern in your seizures. I always have seizures the 3rd week of the month do to hormones changing or if there's a low pressure in the weather. My neuro told me to start using cbd oil (med. marijuana) and I am amazed at how that's reduced my seizures better than any seizure med I've taken. I wish you the best of luck and May God Bless You!

Sue
 

Sabbo

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Hi & welcome to CWE. I've also had simple partials since I was a kid, and just a few tonic clinics. For me those were when I was 14. The scary thing, though, is, I began having complex partials, without auras, about 20 years ago. I don't even know if one has happened unless I injure myself or do something to my surroundings.
 

valeriedl

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HI Marianne! I normally have simple partial seizures with no warning. Unless there is someone there to see it happen I usually don't even know it did. As Porkette said keep a seizure diary, this will help your neuro know more about your seizures, and write as much about the seizure as you can. I recently found out that I was having seizures when I was sleeping because I'd woke up and saw that I wet the bed. This has only happened twice and it's only been in this past month. I sleep alone so who knows if I've been having them before then but no real side effects.

I've gone through a whole pharmacy of meds and some did help. My neuro suggested a VNS, vagus nerve simulator, which has helped a good bit but I am still having seizures.

Nice to meet you!
 

Fedup

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Hi Marianne324

You are very welcome to CWE, I see you have meet some of the great people here already. This is the best place (well I think so) with the best people who will help if we can so sit back, look around and ask away.
 

Bernard

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Hi Marianne, welcome to CWE. Your experience sounds a lot like my wife's experience ten or so years ago.

Since you mentioned that you are experiencing nocturnal seizures, have you ever had a sleep study done to see if you have sleep apnea? Poor blood oxygen levels from sleep apnea could be a contributing factor.
 
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