Hello
- Thread starter julienet
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Zara-Newman
New
- Messages
- 309
- Reaction score
- 0
- Points
- 0
I am new today too, I started when I was 15, I am 20 now. Juvinile Monoclonic Epilepsy, grande mal, petite mal.
Welcome to chat to me anytime you like if you are scared if you can find the pm button.
Xx
Welcome to chat to me anytime you like if you are scared if you can find the pm button.
Xx
Zara-Newman
New
- Messages
- 309
- Reaction score
- 0
- Points
- 0
It depends if you are on a computer or the app on a phone.
Zara-Newman
New
- Messages
- 309
- Reaction score
- 0
- Points
- 0
It is nice here, I wish I had found it sooner.
I don't know about where you live but where I live I have never heard of any support groups for Epilepsy. I think we are really lacking here as I think it is hard to explain to someone who hasn't got it the full of it. They just see the fit and that's it not the rest that is part of it that is the major part to be honest...the drugs and side effects inc long term effects, tiredness, memory loss, slower processing skills etc.
- Messages
- 5,979
- Reaction score
- 989
- Points
- 268
This site is pretty easy to use. I've been using a computer for years and joined another web site and I couldn't even really understand how to use it. I like this one because you usually get an answer to your question within a few hours, maybe a day at the longest. You'll get answers from a lot of people too. On the other site it might have been days before I'd get an answer, if I even got one at all.
If you are having any trouble using it just ask for help and you'll get it.
It's nice to find out that are other people have the same problems and things that you are going through. It's a great place just to talk about things in general too.
Nice to meet you!
If you are having any trouble using it just ask for help and you'll get it.
It's nice to find out that are other people have the same problems and things that you are going through. It's a great place just to talk about things in general too.
Nice to meet you!
- Messages
- 5,979
- Reaction score
- 989
- Points
- 268
I read on here that B6 was good for helping with the side effects of Keppra. On here they call it keprage because keppra tends to make you angry alot. I tried it for that and I started having more seizures. Others have taken it with no problems. It's good to ask your neurologist if you start to take any other medicine to make sure it won't react with any of the ones you are already on.
I read of one that only takes b6 with no AED's at all now. At the min I am a bit unsure of going near my neuro as I know he wants to faff about with my meds to get me on less types but up doses of what's left. Living on my own now I am terrified as I have no support network in the house it will increase my fits. I have more confidence in my GP at least they sit and talk to you. The neuro it's ship em in and ship em out before they can sit on the chair in front of you.......what do they learn in that time? Sorry but my GP knows more about my E.
sassi
New
- Messages
- 104
- Reaction score
- 0
- Points
- 0
Some neuro docs are better than others. Have you tried seeing another one? I don't know what resources you have around where you are or anything but I do know that it's different for every neurologist. Mine is thorough for me and she and my GP worked together. My GP was the one who got me in there after another doctor said "oh that's strange".
Have you Google searched an epilepsy foundation near you? I don't know where you live but I wonder if there might be one nearby to give you some help or something.
Have you Google searched an epilepsy foundation near you? I don't know where you live but I wonder if there might be one nearby to give you some help or something.
- Messages
- 5,979
- Reaction score
- 989
- Points
- 268
I'd defiantly look into finding another neurologist if this one isn't doing a good job. My neurologist is pretty good. He does listen to what I have to say. Sometimes the drs do try to get you taking the least amount of meds as possible by increasing a dose to see if it works better than taking 2 meds (or more) at a time.
At times my neurologist will ask me if I want to go off a medicine (which usually means increasing a dosage of another med) and leaves that decision to me. However if he thinks that the medicine isn't working or is causing problems then he will usually make the decision to change or go off the medicine.
A lot of times it's like a guessing game trying to figure out what meds are best for you. In the 10 years I've had epilepsy I've been on so many different meds and dosages that I've lost track. It's very frustrating but sometimes it's just something that you need to do.
People react differently to meds so the med might be working for them but not for you. This even happens with the side effects. I've been on meds that helped better than other meds but the side effects were just too much to deal with.
Being alone can be scary sometimes. Do you have a friend, family member or neighbor who can check in on you every so often? Give you a call or stop over?
Try to stay calm about doing things in the house and not be afraid of doing them. Just because you take a knife out to cut something doesn't mean that you are going to have a seizure when you use it.
Do you have any pets? Sometimes just having someone (if you call a dog or cat a person) in the house with you. I have 2 cats and a good bit of times one of the cats knows when I have a seizure. He'll get me to sit down and sit on me until he thinks I'm ok to get back up. Not everyone's pet is like this but there are seizure dogs that you can get who know these things.
Do you have an alarm that you can set to go off when it's time to take your medicine so you don't forget? I have one on my cell phone.
At times my neurologist will ask me if I want to go off a medicine (which usually means increasing a dosage of another med) and leaves that decision to me. However if he thinks that the medicine isn't working or is causing problems then he will usually make the decision to change or go off the medicine.
A lot of times it's like a guessing game trying to figure out what meds are best for you. In the 10 years I've had epilepsy I've been on so many different meds and dosages that I've lost track. It's very frustrating but sometimes it's just something that you need to do.
People react differently to meds so the med might be working for them but not for you. This even happens with the side effects. I've been on meds that helped better than other meds but the side effects were just too much to deal with.
Being alone can be scary sometimes. Do you have a friend, family member or neighbor who can check in on you every so often? Give you a call or stop over?
Try to stay calm about doing things in the house and not be afraid of doing them. Just because you take a knife out to cut something doesn't mean that you are going to have a seizure when you use it.
Do you have any pets? Sometimes just having someone (if you call a dog or cat a person) in the house with you. I have 2 cats and a good bit of times one of the cats knows when I have a seizure. He'll get me to sit down and sit on me until he thinks I'm ok to get back up. Not everyone's pet is like this but there are seizure dogs that you can get who know these things.
Do you have an alarm that you can set to go off when it's time to take your medicine so you don't forget? I have one on my cell phone.