hello everyone

[jojoko]

I am new here and i wanted to say hi.
i have epilepsy for 17 years now, since the age of 15. I have gray matter heterotopia and my seizures are gelastic, partial and rarely grand mal ones.
i am happy to be here since sometimes people that don't have epilepsy is hard to understand how a patient feels. I would also be happy to give any advices on matters i know and take any advices on matters i don't.
English is not my mother tongue so i am sorry for any mistakes

 

[valeriedl]

This is a great web site.

It's nice to be able to talk to people who have epilepsy and understand what you are going through. There are many people on here too who don't have epilepsy but have friends or family members who do and want to find information about epilepsy so they can help them. You'll be able to give and get a lot of help by asking and giving answers.

It amazes me how many people who are on here who's main language isn't English. English is what I speak I think they are able to speak it better than I can at times!

It's nice to meet you!

 

[jojoko]

This is a great web site.

It's nice to be able to talk to people who have epilepsy and understand what you are going through. There are many people on here too who don't have epilepsy but have friends or family members who do and want to find information about epilepsy so they can help them. You'll be able to give and get a lot of help by asking and giving answers.

It amazes me how many people who are on here who's main language isn't English. English is what I speak I think they are able to speak it better than I can at times!

It's nice to meet you!

Hi valeried it is nice to meet you too.
i decided to register in this site after reading posts here and seeing that things i feel, which sometimes are taken as exaggeration by non patients, are everyday feelings to patients. I felt really happy because i knew that people here will understand me and i will understand them.
I am really glad to be here and hope to be as helpful as i can.

 

[Dolores]

So glad you found CWE - it's a wonderful place to come to! I've had epilepsy for decades but never knew anyone else with it and I didn't have the wonderful resources. The people here have shared wonderful information about epilepsy and the drugs and how it has affected them. I confirmed a great deal of information that I had only suspected. I'm sure you will also.

Welcome! :hello:

 

[jojoko]

So glad you found CWE - it's a wonderful place to come to! I've had epilepsy for decades but never knew anyone else with it and I didn't have the wonderful resources. The people here have shared wonderful information about epilepsy and the drugs and how it has affected them. I confirmed a great deal of information that I had only suspected. I'm sure you will also.

Welcome! :hello:

Hi Dolores
i don't know anyone with epilepsy too so i really felt the need to talk with people that do since lately my condition was not so good. I am really happy to be here.
Thanks for the welcoming :woot:

 

[N Sperlo]

Hi jojoko. Welcome to CWE. I see you're already mixing in around the boards, but wanted to stop in your thread and say hi. It's good to see you hop into the conversations right away. I look forward to some good discussions.

 

[marika853]

Welcome,
You will find lots of info and details about this illness. What is your mother tongue?
M

 

[jojoko]

Hi jojoko. Welcome to CWE. I see you're already mixing in around the boards, but wanted to stop in your thread and say hi. It's good to see you hop into the conversations right away. I look forward to some good discussions.

Thanks for the welcoming Sperlo
i found lost of interesting threads right away and there are still more to discover. *o*

Welcome,
You will find lots of info and details about this illness. What is your mother tongue?
M

Thanks marika.
My mother tongue is greek, I am from Greece

 

[marika853]

Dah! Saw that after I posted question. Welcome, again.
M

 

[Tez_20]

I am new here and i wanted to say hi.
i have epilepsy for 17 years now, since the age of 15. I have gray matter heterotopia and my seizures are gelastic, partial and rarely grand mal ones.
i am happy to be here since sometimes people that don't have epilepsy is hard to understand how a patient feels. I would also be happy to give any advices on matters i know and take any advices on matters i don't.
English is not my mother tongue so i am sorry for any mistakes

Hello jojoko,

Welcome to CWE and lovely to have you with us

My temporal lobe started at 15 with weird autisums but like yourself giving advice on our experiences can help so many...as epilepsy within itself can be a shocking condition to anyone first experiencing it.

I'm from the UK but i'm surprised members understand me as I type how I speak pure black country talk...very broad

 

[MAB]

I am new here and i wanted to say hi.
i have epilepsy for 17 years now, since the age of 15. I have gray matter heterotopia and my seizures are gelastic, partial and rarely grand mal ones.
i am happy to be here since sometimes people that don't have epilepsy is hard to understand how a patient feels. I would also be happy to give any advices on matters i know and take any advices on matters i don't.
English is not my mother tongue so i am sorry for any mistakes

This website has done more than any doctor or other website in helping me understand my seizures. I had never understood that people could have sensory partial seizures and although my doctor tried to explain it to me it took a long time and a lot of help from the people here to really wrap my head around what was going on.

I highly recommend this site to you and anyone else wanting to learn more about epilepsy.

 

[Lynnterr]

New here, and need advice.

Hello everyone, my name is Lynn. I have been living with epilepsy for 13 years now. I was 27 when I had my first grand mal seizure. I have had between 10 and 15 since. During that time I had 5 whole years completely seizure free 3 of which I was not medicated. I had my first one since that reprieve two years ago. And I have had three to date. I have been on several medications in the past. I was happily on Topomax for around three years (age 30 to 33). So once I started having seizures again that seemed like the direction to take again. So I got the generic topomax and it was a bit of a nightmare. Mainly the hair loss and memory loss(I felt like I was starting Alzheimer's). So I asked to try another drug and was prescribed Lamotrigine I was suppose to titrate up to 175 mm, but have stopped at at 130. I have been suffering with so many side effects. (At least my guess is that it's the medication, I hope). I stopped titration about 2 months ago now. My side effects are sometimes hard to describe. I do get the common headaches and nausea but I also get strange pressure feelings in my head particularly on the top and sometimes in the left forehead area. I also get this strange and scary vibration in my brain. It comes and goes sometimes I won't have one for days and then I do on and off through out the day. I also feel like I can't move too fast or turn too quickly or I get dizzy. I can't tell if it's me having anxiety or if my mood is from the medication. I am sometimes in a state of complete panic and trying desperately not to show it to anyone (especially my kids) , or I'm angry a lot. Lastly, when I walk (sometimes, especially after these vibration episodes) I feel as though I'm walking on a boat you know the feeling where your steps don't feel like they land where they should un even. Anyway I would love it if someone understands what I'm talking about or at least has some advice to share. Thanks for reading.

 

[Tez_20]

Hello everyone, my name is Lynn. I have been living with epilepsy for 13 years now. I was 27 when I had my first grand mal seizure. I have had between 10 and 15 since. During that time I had 5 whole years completely seizure free 3 of which I was not medicated. I had my first one since that reprieve two years ago. And I have had three to date. I have been on several medications in the past. I was happily on Topomax for around three years (age 30 to 33). So once I started having seizures again that seemed like the direction to take again. So I got the generic topomax and it was a bit of a nightmare. Mainly the hair loss and memory loss(I felt like I was starting Alzheimer's). So I asked to try another drug and was prescribed Lamotrigine I was suppose to titrate up to 175 mm, but have stopped at at 130. I have been suffering with so many side effects. (At least my guess is that it's the medication, I hope). I stopped titration about 2 months ago now. My side effects are sometimes hard to describe. I do get the common headaches and nausea but I also get strange pressure feelings in my head particularly on the top and sometimes in the left forehead area. I also get this strange and scary vibration in my brain. It comes and goes sometimes I won't have one for days and then I do on and off through out the day. I also feel like I can't move too fast or turn too quickly or I get dizzy. I can't tell if it's me having anxiety or if my mood is from the medication. I am sometimes in a state of complete panic and trying desperately not to show it to anyone (especially my kids) , or I'm angry a lot. Lastly, when I walk (sometimes, especially after these vibration episodes) I feel as though I'm walking on a boat you know the feeling where your steps don't feel like they land where they should un even. Anyway I would love it if someone understands what I'm talking about or at least has some advice to share. Thanks for reading.

Hi Lynn,

Welcome to CWE and nice to have you with us and I've found members so very helpful and open to talk to which helps, as I've had temporal lobe epilepsy since I was 15 and grandmal was diagnosed at 18 and im now 46 so i've had quite a few years at it like a few other members.
You can have partial and tonic-clonic seizures with grandmal epilepsy also and these can cause the symptoms your feeling besides. Stress besides anxiety also plays a large role which can lead to you having seizures...as your stressing your CNS (central nervous system) heres abit of info on partial seizures.
I've gone through so many different stages and feelings I fire them well at my neuro and she explains them but as also stated with my quick temper, depression ontop the lot combined can take we through some episodes which really feel weird to we.

Partial seizures. Partial seizures are also called focal seizures. In these types of seizures the burst of electrical activity starts in, and stays in, one part of the brain. Therefore, you tend to have localised (focal) symptoms. Different parts of the brain control different functions, so symptoms depend on which part of the brain is affected. Partial seizures may not affect consciousness, but may affect sensations, emotions, behaviours, muscles, or combinations of these.