writer2007
12-26-2008, 10:32 PM
Hi :)
Our daughter has been diagnosed with having non epileptic seizures, however I do believe that she may well have epilepsy, and have made an appointment to see another doctor for a second opinion. She has had 3 seizures, (in 5 years) and is currently back on anti epilepsy medication, one of the seizures occured whilst on the medication.
She is almost 18 and of course wants to do the usual things, go out with her friends for a few drinks, go abroad etc etc, and whilst we can't wrap her up in cotton wool, the idea of her being out for the night or even worse on holiday and having a seizure terrifies us.
Please, I would love to hear from other parents who are in or have been in a similar situation :)
Thanks :)
Writer
PS Looking back at all 3 seizures the connections seems to be lack of sleep.
Our daughter has been diagnosed with having non epileptic seizures, however I do believe that she may well have epilepsy, and have made an appointment to see another doctor for a second opinion. She has had 3 seizures, (in 5 years) and is currently back on anti epilepsy medication, one of the seizures occured whilst on the medication.
She is almost 18 and of course wants to do the usual things, go out with her friends for a few drinks, go abroad etc etc, and whilst we can't wrap her up in cotton wool, the idea of her being out for the night or even worse on holiday and having a seizure terrifies us.
Please, I would love to hear from other parents who are in or have been in a similar situation :)
Thanks :)
Writer
PS Looking back at all 3 seizures the connections seems to be lack of sleep.
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soccerschmee14
12-27-2008, 01:57 AM
i know exactly what your daughter is feeling. i have had e since i was 5. i would have the occasional grand mals, once or twice a yr. and then in college everything got a little crazy. i was on tegretol at the time. i would always have a sz while working out. the drs thought this was non epileptic szs (NES) along with my regular diagnosis of E. they sent me for counseling, which i thought was not helpful at all...and in the end i got a 3rd opinion and found out they were epileptic szs. i would suggest a 2nd opinion if that is what your gut is telling you. lack of sleep and stress are triggers for me but now that i have found the right combo of meds i am doing pretty good and about to graduate from college.
btw...has she had an eeg or anything like that
btw...has she had an eeg or anything like that
writer2007
12-27-2008, 02:43 AM
Hi, thank you so much for replying :)
She doesn't really see the seizures as a problem (because they are grand mal, she doesn't know they have happened until we tell her afterwards), but it's the restrictions she finds crippling (and she is becoming really down). We have such a close relationship, so if me and her dad suggest "maybe you shouldn't go out tonight", she won't, but when all her friends are going to parties, she gets really depressed, and we find it heart breaking.
She has an amazing job and is very independent, but when it comes to going out for a few drinks with her friends (doctor says she can drink with her meds) and going on holidays, we don't know what to do for the best, do we advise her not to do it, and feel terrible (and see her more depressed) or let her live her life as normal and pray everything is fine?
She had an EEG 5 years ago and they said everything was fine, but I want more test now and am going to push for them.
Thanks again for replying
writer
She doesn't really see the seizures as a problem (because they are grand mal, she doesn't know they have happened until we tell her afterwards), but it's the restrictions she finds crippling (and she is becoming really down). We have such a close relationship, so if me and her dad suggest "maybe you shouldn't go out tonight", she won't, but when all her friends are going to parties, she gets really depressed, and we find it heart breaking.
She has an amazing job and is very independent, but when it comes to going out for a few drinks with her friends (doctor says she can drink with her meds) and going on holidays, we don't know what to do for the best, do we advise her not to do it, and feel terrible (and see her more depressed) or let her live her life as normal and pray everything is fine?
She had an EEG 5 years ago and they said everything was fine, but I want more test now and am going to push for them.
Thanks again for replying
writer
soccerschmee14
12-27-2008, 03:58 AM
i would try not to restrict her that much...but im just a 21 yr old talking. hehe. i go out and do the occasional drinking. drinking doesnt seem to affect me much. but if i know im going to not get much sleep then i will make sure that i can sleep late. maybe you could let her go to the party and then have her sleep late so she wont be at risk for a sz. and yea i think its smart to push for more testing with the recent szs. when i was having lots a little while back i underwent 2 VEEGs to try to resolve everything...no fun but i guess necessary.
Travis from MN
12-27-2008, 03:16 PM
If you can find an epileptologist over the standard neurologist I'd say try to find one. They are a neurologist with training focused in the field of epilepsy. There are not a lot of them, but I have found they tend to be highly sought after due to their expertise.
About the drinking, you can't make a blanket statement really. YES it increases the risks IN GENERAL, however some of us can tolerate drinking and not have seizures as a result. I would say each person NEEDS TO KNOW if their system can take any or not before they go out in public and drink. Some can't take any!! A large number of the medications have warnings about alcohol on them. So be warned, be educated before putting yourself in danger if you don't know.
I've had seizures since I was 5 (brain tumor was my cause), medicated ever since. I could even drive for a few years before they worsened.
--Travis
About the drinking, you can't make a blanket statement really. YES it increases the risks IN GENERAL, however some of us can tolerate drinking and not have seizures as a result. I would say each person NEEDS TO KNOW if their system can take any or not before they go out in public and drink. Some can't take any!! A large number of the medications have warnings about alcohol on them. So be warned, be educated before putting yourself in danger if you don't know.
I've had seizures since I was 5 (brain tumor was my cause), medicated ever since. I could even drive for a few years before they worsened.
--Travis
writer2007
12-31-2008, 11:07 PM
Hi, thanks for taking the time to reply :)
To be honest I don't know whether I'm coming or going. She wanted to go out for a few drinks over Christmas (we didn't stand in her way, as we hate seeing her so miserable, and as I mentioned earlier she has been really down). We just told her to be sensible. But on the night out her and her friends met up with an other group of friends, who were later going on to a private party. When she called, I said she should come home (because this is the first time she has really been out for the evening drinking). I said, we just needed to see if she was affected by having a drink, she did come home, but was crying her eyes out saying that she can't do all the things her friends can and that she is always missing out on things and basically that her like is ruined (I know there are people a lot worse off, but she's only 17, so this seems like the end of the world to her, I probably would have felt the same at her age).
Since then she has been really down and has hardly said a word, it's tearing us apart seeing her like this.
I really don't know where to turn:(, we have such a close relationship, but I feel like she is going to end up seeing me as this witch who is holding her back, when all I'm doing is trying to protect her the best I can.
Writer
To be honest I don't know whether I'm coming or going. She wanted to go out for a few drinks over Christmas (we didn't stand in her way, as we hate seeing her so miserable, and as I mentioned earlier she has been really down). We just told her to be sensible. But on the night out her and her friends met up with an other group of friends, who were later going on to a private party. When she called, I said she should come home (because this is the first time she has really been out for the evening drinking). I said, we just needed to see if she was affected by having a drink, she did come home, but was crying her eyes out saying that she can't do all the things her friends can and that she is always missing out on things and basically that her like is ruined (I know there are people a lot worse off, but she's only 17, so this seems like the end of the world to her, I probably would have felt the same at her age).
Since then she has been really down and has hardly said a word, it's tearing us apart seeing her like this.
I really don't know where to turn:(, we have such a close relationship, but I feel like she is going to end up seeing me as this witch who is holding her back, when all I'm doing is trying to protect her the best I can.
Writer
shakin stevens
01-01-2009, 05:36 PM
hi,
Your daughters situation is very similar to mine. I live in the north east and have lots of experience with the doc,s both national health and bupa, my immediate advice is try to get at least three experienced doctors oppinions.
If you are happy giving a more accurate account of you daughters seizure history including your daughters input if poss i will help as much as i can.
ste
Your daughters situation is very similar to mine. I live in the north east and have lots of experience with the doc,s both national health and bupa, my immediate advice is try to get at least three experienced doctors oppinions.
If you are happy giving a more accurate account of you daughters seizure history including your daughters input if poss i will help as much as i can.
ste
loriy
01-04-2009, 09:09 PM
:dizzy:Hi,
This is advice from a mother in a similar situation. My son is 23 and has been having seizures for almost 2 years. His are due to treatment of a brain tumor when he was 5. He is on Keppra and Lamictal and has been stable for a couple of months(yeah!) He was having gran mal and complex partials. In light of this history HE SHOULD NOT DRINK. But..I find with my boys if I say no they will find a way. I try to educate him on what can happen if he drinks on the heavy duty meds he takes. I also educate his friends. He has gone out on a couple of occasions and gotten drunk. He became sick and hungover. He was real sick one time. Puked out side of a restaurant. This was embarassing for him. These couple of times have been enough to knock some sense into his head and his friends heads. They are decent enough to watch out for him. They all have my phone number and will call me if there is a problem. He has pretty much come to the conclusion that drinking is not all it is cracked up to be. Maybe if you give just a little she will find her own way. Just be there to catch her when she falls. My heart goes out to you. Hope this helps.
This is advice from a mother in a similar situation. My son is 23 and has been having seizures for almost 2 years. His are due to treatment of a brain tumor when he was 5. He is on Keppra and Lamictal and has been stable for a couple of months(yeah!) He was having gran mal and complex partials. In light of this history HE SHOULD NOT DRINK. But..I find with my boys if I say no they will find a way. I try to educate him on what can happen if he drinks on the heavy duty meds he takes. I also educate his friends. He has gone out on a couple of occasions and gotten drunk. He became sick and hungover. He was real sick one time. Puked out side of a restaurant. This was embarassing for him. These couple of times have been enough to knock some sense into his head and his friends heads. They are decent enough to watch out for him. They all have my phone number and will call me if there is a problem. He has pretty much come to the conclusion that drinking is not all it is cracked up to be. Maybe if you give just a little she will find her own way. Just be there to catch her when she falls. My heart goes out to you. Hope this helps.
Nat2009
01-21-2009, 07:40 AM
My Mam is a lot like that I've been having seizures since I was 13 (I'm 21 now) and have always tried too live as normal life as possible, in fact Epilepsy stops me from doing nothing, although with being the person with epilepsy and not the mother I don't fully understand what its like for you but I do think you should encourage your daughter not to let it rule her life but take nessarcery steps to be safe, e.g If I meet new people or start a new job I always tell them I have epilepsy and what to do in case of an attack I also wear a meditag bracelet which has my name my condition and contact numbers in case of an attack which I think is a brilliant idea for people like me.
lamb
01-21-2009, 11:52 AM
Hello, I know it's been awhile but can I add? I have had epilepsy for 38 years or more. Your daughter is able to do alot more than you think, I bet. But she shouldn't drink much. Too much alchohol can bring on a siezure. I usually have 2. I think she'd rather not drink too much than have people see her have a seizure. The only thing that holds me back from doing much is not driving. Also, she should wear a medical bracelet, like Nat said. (If she is kinda embarrassed to wear one, they also make them in necklace form that she can wear under her shirt.)
Nat2009
01-23-2009, 07:31 AM
Oh yes I forgot to mention I don't drink that often mostly because I drive, but when I was your daughters age I did drink an awful lot mostly because I thought I was being clever thankfully I never had a seizure due to it, but I do think its important to stress to your daughter if she drinks TOO much it could bring one on not stop her from doing anything.
Epilepsy is only an condition not a disability.
Epilepsy is only an condition not a disability.