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saraelena

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Hey guys,
I am new to this site. I hope it will be helpful to me and anyone on here. I just need to reach out and talk to people who understand. Well, I'll be 40 this August but still get carded :) Pretty much had a head trauma from assault about 4 years ago. Am on Keppra but still, it happens from the lower left half part of my noggin. Anyway, am living in Dallas and cannot drive which is hard to deal with. I used to be a casting director in Los Angeles and also lived in New York and was an actress in Sydney for a good while. Fun life but all has changed. Luckily I live downtown so it's very walk friendly and no car payments! So if anyone wants to reach out I would love to help or just talk about what the hell is going on. I guess it's just frustrating because it keeps happening but working with a great neurologist to try and change drug mix. Have had some really great head injuries from literally falling on my face. I swear...I get no warnings and I tend to hit the hardest thing around. But it always heals. So don't despair if it happens to you! Anyway, hope you all are well and look forward to having a support system and being a part of your support.
Take care,
SaraElena
 
Hi Saraelena,
Welcome to CWE, this is a great forum & everyone is fantastic :).
Sorry about your head trauma. I see you on Keppra, has it helped control your seizures?

I'm currently on Keppra & Tegretol which works wells for me, I am currently slowly being weaned of Tegretol & hope to eventually be on 1 medication.
 
HI:hello::hello:

I have found this forum to be so helpful. It's makes a big difference to,know You are not alone. The people understand the feeling, the Neur. the meds. side effects.

I couldn't tolerate Keppra, but there are many people on this forum who have good luck with it.
 
Hi Saraelena, welcome to CWE!

I hope you and your neurologist can work out the meds so that they control your seizures. If the meds aren't successful, you might want to look into neurofeedback to see if it helps. There are practitioners in your area -- I don't know how conveniently located they are for a non-driver though... More info about neurofeedback here: http://www.coping-with-epilepsy.com/forums/f22/eeg-neurofeedback-501/

Best,
Nakamova
 
Thanks so much for replying. It's so great to have someone who knows what's going on. What is neurofeedback? I will definitely look into that. Hope you are doing well and I hope to talk to you soon again. Take care!
 
jyearta said:
HI:hello::hello:

I have found this forum to be so helpful. It's makes a big difference to,know You are not alone. The people understand the feeling, the Neur. the meds. side effects.

I couldn't tolerate Keppra, but there are many people on this forum who have good luck with it.
Click to expand...
Thank you for replying. I've had okay non side effects from Keppra. Just tiredness. How are you feeling?
Talk to you soon!
 
I'm doing ok for most part.

I've seen 7 or 8 Neur. and have been on about all the meds. out there

My system seems to only tolerate Dilantin and Clonazepam.

it has always taken 2 meds. to have be best seizure control
 
reply

I have Clonazepam (sp?) but it gives me the worst hangover the next day and I feel out of out of it and sick. But I do have to say that if I'm in a bind I take it to help me sleep. I'm sure you know lack of sleep is a big trigger. Stress as well...seriously. After your seizures do you feel confused about date and time? I have to look at my phone. Hope you are having a good go of it. I do have to say Dilantin scares me a bit.
Take care and reach out anytime.
saraelena
 
Hi saraelena, nice to meet you. This is a great web site. The people are wonderful and I've learned so much here. It's great to be able to talk to someone who knows what you mean when talking about the seizures you have. I'll try describing what it's like to family, friends and sometimes even my neuro but they just don't understand.

I had my first seizure almost 11 years ago now. It came out of nowhere, they still don't know what caused it. I was put in a coma for 3 weeks just to get the seizures to stop.

I have a Vagus nerve stimulator, it's sort of like a pace maker for your brain that helps stop seizures and I'm currently taking:
Depakote
Tegretol
Keppra
Lamictal

I've been on so many different drug combos through the years that I've lost count of what they are. It's not fun trying to find the right meds that work for you. Someone might be on it and it works great for them but it doesn't work at all for you and you might have horrible side effects from it.

With what I'm on now I've gone from having around 20 horrible seizures a month in the begining, sometimes several a day, to around 5 a month which usually aren't that bad. It took a while to get to that point though.

My neuro is now looking to change things around again because I've started having more seizures. I don't know if you can be on a medicine for so long that it stops working for you (someone else will have to answer that) and that could be why hes thinking of doing this.

I usually never know when a seizure is coming on. If there is no one there to see it actually happen I don't even know I had it. A good bit of the time I'll have a horrible migraine headache after a seizure so if I'm alone and get that migraine I probably had a seizure that I didn't know about.

Stress and lack of sleep are huge triggers for me too. I always try to get a full nights sleep and take a nap in the afternoon. If I go a few days without that nap I tend to have a seizure. I try not to let myself get worked up over thing but that's easier said than done sometimes.

After a seizure I'm pretty confused at what is going on. There are questions that people ask me - what is my name, what is their name, where am I, what the cat's names are and things like that. Simple questions that I should be able to answer but if I'm now fully out of the seizure I can't answer any of them.

Nine times out of ten I don't know who my husband is. I know he should be there with me but I don't know his name or that he's my husband. I've even called him by ex-boyfriends names instead of his. He laughs because half the time I know the cat's names before his, he thinks I should be mairred to the cat instead of him!

I was 26 when I had my first seizure. I had to quit my job and move back home with my parents.

I also can't drive. We live in the country so there's no public transportation and I have to rely on people to get me from here to there when my husband's at work and can't. Luckily my family live next door. My grandparents, who are retired, will take me any where I need to. Dr appointments, grocery shopping and so much more. I know they don't mind, I think they actually like it, but I just hate asking them all the time.

Luckily I've really never hurt myself during a seizure. I've fallen out of the shower a few times and banged my shoulder on the sink but it only left a bruise.

I usually just stare off into space when I have a seizure but I've done some pretty stupid things too. I've scribbled all over my crossword puzzles a few times. Tried to put a pillow in a pillow case on my foot like it was a sock, my husband just gave up on trying to take it off of me after a few minutes. I had one in the bedroom with my husband, I'll let you figure out what we were doing.... The best though I think is when I loaded the dish washer. I thought my husband did it. The plates were every where and all of the silverware was set perfercetly on the drawers instead of the holders. I thanked my husband for loading it for me but to let me do it from now on because he didn't do it right. He had no clue what I was talking about and that's when we realized I had a seizure.

Sorry this is long but I hope I answered some of your questions about things. You're going to find alot of help!
 
valeriedl said:
Hi saraelena, nice to meet you. This is a great web site. The people are wonderful and I've learned so much here. It's great to be able to talk to someone who knows what you mean when talking about the seizures you have. I'll try describing what it's like to family, friends and sometimes even my neuro but they just don't understand.

I had my first seizure almost 11 years ago now. It came out of nowhere, they still don't know what caused it. I was put in a coma for 3 weeks just to get the seizures to stop.

I have a Vagus nerve stimulator, it's sort of like a pace maker for your brain that helps stop seizures and I'm currently taking:
Depakote
Tegretol
Keppra
Lamictal

I've been on so many different drug combos through the years that I've lost count of what they are. It's not fun trying to find the right meds that work for you. Someone might be on it and it works great for them but it doesn't work at all for you and you might have horrible side effects from it.

With what I'm on now I've gone from having around 20 horrible seizures a month in the begining, sometimes several a day, to around 5 a month which usually aren't that bad. It took a while to get to that point though.

My neuro is now looking to change things around again because I've started having more seizures. I don't know if you can be on a medicine for so long that it stops working for you (someone else will have to answer that) and that could be why hes thinking of doing this.

I usually never know when a seizure is coming on. If there is no one there to see it actually happen I don't even know I had it. A good bit of the time I'll have a horrible migraine headache after a seizure so if I'm alone and get that migraine I probably had a seizure that I didn't know about.

Stress and lack of sleep are huge triggers for me too. I always try to get a full nights sleep and take a nap in the afternoon. If I go a few days without that nap I tend to have a seizure. I try not to let myself get worked up over thing but that's easier said than done sometimes.

After a seizure I'm pretty confused at what is going on. There are questions that people ask me - what is my name, what is their name, where am I, what the cat's names are and things like that. Simple questions that I should be able to answer but if I'm now fully out of the seizure I can't answer any of them.

Nine times out of ten I don't know who my husband is. I know he should be there with me but I don't know his name or that he's my husband. I've even called him by ex-boyfriends names instead of his. He laughs because half the time I know the cat's names before his, he thinks I should be mairred to the cat instead of him!

I was 26 when I had my first seizure. I had to quit my job and move back home with my parents.

I also can't drive. We live in the country so there's no public transportation and I have to rely on people to get me from here to there when my husband's at work and can't. Luckily my family live next door. My grandparents, who are retired, will take me any where I need to. Dr appointments, grocery shopping and so much more. I know they don't mind, I think they actually like it, but I just hate asking them all the time.

Luckily I've really never hurt myself during a seizure. I've fallen out of the shower a few times and banged my shoulder on the sink but it only left a bruise.

I usually just stare off into space when I have a seizure but I've done some pretty stupid things too. I've scribbled all over my crossword puzzles a few times. Tried to put a pillow in a pillow case on my foot like it was a sock, my husband just gave up on trying to take it off of me after a few minutes. I had one in the bedroom with my husband, I'll let you figure out what we were doing.... The best though I think is when I loaded the dish washer. I thought my husband did it. The plates were every where and all of the silverware was set perfercetly on the drawers instead of the holders. I thanked my husband for loading it for me but to let me do it from now on because he didn't do it right. He had no clue what I was talking about and that's when we realized I had a seizure.

Sorry this is long but I hope I answered some of your questions about things. You're going to find alot of help!
Click to expand...
Hi! I think I accepted your friend request but sometimes the site completely confuses me. I really appreciate your thoughts and also sharing with me what you are going through. I admire you for living with this and it IS so good to talk to someone who has seizures as well. I know, mine affected my job and everything. I too have to rely on people to take me around and I know they want to do it for me but it's also kind of an ugghhh moment when I have to ask. Well, in my seizures I'm a little jealous of you. I've never done anything constructive like loading a dishwasher! But like you I really have no memory afterwards. I've woken up and looked in the mirror and had blood on my face from my mouth from biting the sides of my tongue. I also really don't get a warning. I tend to feel bad for anyone who might be there to witness it because I have no idea what I look like when it's happening. I'll throw up and have headaches afterwards and not know what time or date it is or who I've spoken to. I also do really fall on any hard surface with a corner! I'm just getting over a hematoma (sp) above my left eye from the last one. 2 black eyes from all the blood moving around under there but it's healing well. As well as a concussion and a broken blood vessel. A couple of months ago I had one on my cheek. My poor plastic surgeon has said I really can't keep hitting my head like this. I'm trying to lead a relatively normal life by living downtown so I can be mobile without a car as much as I can. But one funny story is I was living in L.A. visiting a friend and a seizure struck. The next thing I know I'm being carried by 2 firemen to the e.r. Come to find out my friend's wife had fixed my hair while I was so completely out of it so I would look good for the firemen :) Have to find humor in all this stuff. But anytime you need to talk please reach out. I completely understand the frustration and changes and side effects that happen when it's all about finding a "balance". Good goodness dating scares the crap out of me...I mean who would want to deal with this! I'm so glad you have someone in your life who understands :)
So let me know how you are and reach out anytime :) I'll do the same!
Talk soon,
saraelena
 
Hi Saralena,
Just thought i would wish you a warm welcome to C.W.E,you have certainly come to the right place.All the best.
 
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