Hello. Newbie here....

Zazz82

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Well hi. This is my first time ever writing to a forum. Figured this was a good place to start since epilepsy is the thing I’ve lived with most of my life. Had my first grand mal when I was only 13. I’m 35 now and have gone 5 years without a seizure until yesterday. Had 2 grand mal’s back to back as usual. Lasted about 2 min. Very very devastating because I actually thought I was done with seizures after not having any for so very very long. The day after I feel so weird though and I hate it so much. Everything feels “off” and I feel half way out of my body if that makes any sense. It’s very uncomfortable. I just want to feel normal again. The last time I had a seizure, 5 years ago before yesterday, It left me in an odd depression state for about a week. I’m just curious if anyone else feels bizarre and kinda out of body for a few days after having a seizure.
 

cadsgj

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Greetings. Sorry to hear that after your 5 good years seizures came back. Curious, during your 5 free years did you need to take any medication? I certainly understand your out of body feelings. I don’t leave the world to often any more, but when I do it is leaving this world during the seizure an after, I slowly shift back. Usually it takes just a few hours though, not days. Prayers with you that the seizure free world gets back quickly.
 

Zazz82

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I’ve always taken depakote. For about 2 months, I stopped taking it and everything seemed fine. Before that I was down to 1 or 2 a week. Long ago I used to have to take much much more. Maybe that’s why I had the seizure though. Stopping the meds for 2 months. I’m really confused about it all right now. When I was younger it only took me a few hours to bounce back but now the after effects seem to make me feel weirder for a bit longer. Another odd tid bit is that the night before this seizure, I started my period. I’m not sure if that had anything to do with it. I’ve never been diagnosed with catamenial epilepsy, only regular epilepsy. Not sure what has changed in the past 10 years. I have not been to a neurologist in about 15 years. I know that’s not a good thing with me being an epileptic but I suppose this is what happens when one neglects ones self.
 

Porkette

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Hi Zazz82,

Welcome to the forum! I'm sorry to hear that you had the 2 seizures. I've had absence and complex partial seizures for 46 yrs. and when I was about your age I started to see a change in my seizures where I would have them 7-10 days before my period and this may be what happened to you. It all has to do with the hormones changing the estrogen level goes up while the progesterone level goes done in turn causing the catamenial seizures. I also took Depakene like you have until it didn't work anymore in me because my body got used to it. One thing that has helped me a lot is cbd oil (medical marijuana) my Epileptologist told me to start using it and it has decreased the seizures a lot. I would often feel depressed or get moody before the seizures happened. Do yourself a favor and get a calendar and write down what time you have any seizures along with the date and you may see a pattern in the seizures. I always have them the 3rd week of each month. I wish you only the best of luck and May God Bless You!

Sue
 

Nakamova

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Hey Zazz82, welcome to CWE!

Changing meds or med doses can be a stress on the brain, so stopping the Depakote for two months could definitely have played a role in your recent seizure. Hopefully it's just a fluke, but also a good reminder to check in w. a neurologist. Our metabolisms are always changing as we age, so our reactions to meds and other health-related factors can also change over time.
 

Debbie53

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Changing Meds

Hey Zazz82, welcome to CWE!

Changing meds or med doses can be a stress on the brain, so stopping the Depakote for two months could definitely have played a role in your recent seizure. Hopefully it's just a fluke, but also a good reminder to check in w. a neurologist. Our metabolisms are always changing as we age, so our reactions to meds and other health-related factors can also change over time.
Hi Nakamova,
That's not something I thought about. Looking at the calendar to see if there is a pattern. I am 53 but the menopause might have something to do with things. I don't suffer from any effects of the menopause - no hot sweats - but it could be affecting my Epilepsy like you say.

Thanks Debbie

P.S. I do have to say that this website is lovely. Did you or Bernard set it up. Thank you.
 

Nakamova

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I do have to say that this website is lovely. Did you or Bernard set it up.
All credit to Bernard, who was inspired by his wife's epilepsy to create this forum.
 

Sabbo

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Hi. I have simple & complex partial seizures. The longest I've gone seizure-free is about a month. Simple partial seizures have bothered me since I was little, but nobody knew what those "weird feelings" I was having were for a long time. I had 3 or 4 tonic clonics when I was 14, & one of the SPs occurred during an EEG, so doctors were finally able to diagnose them. I began having the complex partial seizures about 19 years ago.
 

Debbie53

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Hi. I have simple & complex partial seizures. The longest I've gone seizure-free is about a month. Simple partial seizures have bothered me since I was little, but nobody knew what those "weird feelings" I was having were for a long time. I had 3 or 4 tonic clonics when I was 14, & one of the SPs occurred during an EEG, so doctors were finally able to diagnose them. I began having the complex partial seizures about 19 years ago.
Hi Sabbo,
Regarding your Epilepsy history I have had strange feelings since I was about 10 years old. I can remember lying on the floor as I felt sort of sick but I did not want to be sick. I now know that was a warning but my epilepsy did not go any further - I am not sure how to explain that. You will know.

Someone in this website, probably Nakamova, told me that I have simple partial seizures which can sometimes lead to tonic clonic. I have been diagosed with Epilepsy when I was 18 years old and no-one has told me what type of Epilepsy I do have. I have found out mostly through this website and other websites on Epilepsy. My neurologist that I am now consulting has described what happens to me. He has told me that I have Juvenile Myoclonic Epilepsy. I had written my full history as the previous neurologist did not even consult my medical records. They are allowed to access them so that they can help us. Well, he didn't, surprise surprise.

I have to say, though my Epilepsy is not as bad as yours and many people on this website. I have small jerks and muscle twitches. However, I do have many at night before I go to sleep - my body feels as though I have a shake - it is frightening and I am not sure I can put up with it. I have awful dizziness so I am going to have a little dance to see if it stops me from enjoying this or not. I will have to tell my GP about the jerks before I go to bed as I don't think he knows. I am going to see him next month.

Can I ask you something. When I was younger about 10 years old I think I was always feeling faint and sometimes I actually did faint. When I was on holiday with my parents it always ended up me being taken into strangers homes to lie on their bed when I felt that I was going to faint. Can you tell me if that was the beginning of Epilepsy?

What happens to you when you have complex partial seizures?

Thanks
Debbie53
 

Nakamova

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When I was younger about 10 years old I think I was always feeling faint and sometimes I actually did faint. When I was on holiday with my parents it always ended up me being taken into strangers homes to lie on their bed when I felt that I was going to faint. Can you tell me if that was the beginning of Epilepsy?
Hard to know for sure. Most (but not all seizures) would come with additional symptoms and less warning time. But the fainting could have been a sign of a co-occurring illness (like migraines or circulation issues) or condition (electrolyte imbalance, dehydration) that could play a role in triggering seizures.
 

Sabbo

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What I feel during my simple partial seizures is a little hard to describe/explain. I can feel a very strange feeling start at the back right side of my head. That is where I have scar tissue in my brain due to being a forceps delivery. I was glad that doctors finally recognized those "feelings" as something after one occurred during an EEG.

Family members have said that sometimes I appear to be staring when those seizures start. I'm usually aware of whatever is going on around me, and I simply close my eyes & put my head down until the feeling is over.
 

Debbie53

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The Beginning of a Seizure.

Hard to know for sure. Most (but not all seizures) would come with additional symptoms and less warning time. But the fainting could have been a sign of a co-occurring illness (like migraines or circulation issues) or condition (electrolyte imbalance, dehydration) that could play a role in triggering seizures.
Thanks Nakamova, That's really helpful. One to keep. Actually I wondered about the heat issue. It has been really hot this summer. We have had a great summer in the UK. When it was really hot I was a little scared to venture outside to sunbathe so I stayed inside and worked on my computer.

Speak to you later.
Debbie
 
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