Hello everyone. My 27 yr old son had his first seizure last Thursday quickly followed by his second one hours later. Both were approximately 30 secs longer with full seizure activity. He was quickly started on Dilantin and so far has not had another one. Obviously we are both in shock and now reality is setting in heavily for us both. We had our first GP appt today and he is saying he cannot continue with his current work as it deals with being on a ladder a lot and as well he says he should not live alone for now. My son owns his own house and I lives a 1000 miles away (I've taken time away from work and life to be here with him) but I originally thought maybe 2 weeks but now I see that's not realistic. The Dr was not clear with how long he should be living with someone or if there is a time period that we should be concerned with for a possible recurrence other than to say he can possibly apply to have his license back after 6 months with no seizures. We are awaiting a call from the University Hospital for his eeg test and then it will likely 6 weeks after that to see a Neurologist. What do you all think about the living with someone issue and for how long? There's a lot of financial and personal changes that have to made and being in this grey area with no answers is stressful. Any help is greatly appreciated.
New diagnosis with questions
- Thread starter azr
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Hi azr,
I'm sorry to hear that your son had a seizure. I've had them for 44 yrs. and I was just a kid when I started to have seizures. Take my word from my past experience your son should see an Epileptologist which is a Dr. who specializes in epilepsy. I had about 2 weeks of testing done and was put on seizure med when I first started having seizures but today they do things much faster. I learned to live on my own even in my teens I went to a boarding school and lived out of state away from my family. Once the Dr. finds out what type of seizure your son is having and gets him on the correct meds he can still work but as you mentioned he won't be able to drive. Tell your son to keep track of his seizures and write down what time of day/night the seizure happened by doing this it will be helpful the Dr. and the Dr. may see a pattern in his seizures as to what time of day or what days of the month your son is having any seizures.
Tell your son to stay away from anything with nutra sweet ex. diet soda because that can trigger seizures for many people. Also cut back on the carbs and starch foods and start eating foods high in fat there's a special diet called the ketogenic diet that works good at reducing and sometimes stopping seizures. Also have your son start taking vitamin B12 1000 mcg. once a day that has done wonders reducing my seizures. I wish you and your son only the best and May God Bless the Both of You!
Sue
I'm sorry to hear that your son had a seizure. I've had them for 44 yrs. and I was just a kid when I started to have seizures. Take my word from my past experience your son should see an Epileptologist which is a Dr. who specializes in epilepsy. I had about 2 weeks of testing done and was put on seizure med when I first started having seizures but today they do things much faster. I learned to live on my own even in my teens I went to a boarding school and lived out of state away from my family. Once the Dr. finds out what type of seizure your son is having and gets him on the correct meds he can still work but as you mentioned he won't be able to drive. Tell your son to keep track of his seizures and write down what time of day/night the seizure happened by doing this it will be helpful the Dr. and the Dr. may see a pattern in his seizures as to what time of day or what days of the month your son is having any seizures.
Tell your son to stay away from anything with nutra sweet ex. diet soda because that can trigger seizures for many people. Also cut back on the carbs and starch foods and start eating foods high in fat there's a special diet called the ketogenic diet that works good at reducing and sometimes stopping seizures. Also have your son start taking vitamin B12 1000 mcg. once a day that has done wonders reducing my seizures. I wish you and your son only the best and May God Bless the Both of You!
Sue
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Welcome azr,
Sorry to hear about your son's seizures. It is a shock to your system. My seizures started when I was 22 years old. They started as Cps and went into generalized seizures. At the time I was married and we eventually had two children. My seizures were very difficult to control, so I was seeing an Epileptologist, as Porkette suggested.
Different things can spark seizures for everyone. For me it was a hormonal thing. For your son, it could be what he eats, whether he drinks alcohol, lack of sleep, or other issues. Or it could be hypoglycemic seizures. Has he been tested for that? I also have Diabetes and sometimes low blood sugar can bring on a seizure if I'm not careful (that is if my glucose level is REALLY LOW). So I have to watch my diet carefully. But before messing with any of the diet issues, make sure he's getting the right meds for seizures.
That ketogenic diet is used mostly for children and is a very STRICT diet. I suggest you speak to your dr. BEFORE starting any diet.
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet
Now I live on my own, my kids are grown and on their own. I don't drive but live close to the Light Rail so I can get to most places by myself. I still have a CP seizure once in a while, but most people don't even notice so I can continue on with my day. I haven't had a bad TC in 10 years now. So once your son is stabilized on a medication, he should be ok to live alone eventually.
Hang in there.
Sorry to hear about your son's seizures. It is a shock to your system. My seizures started when I was 22 years old. They started as Cps and went into generalized seizures. At the time I was married and we eventually had two children. My seizures were very difficult to control, so I was seeing an Epileptologist, as Porkette suggested.
Different things can spark seizures for everyone. For me it was a hormonal thing. For your son, it could be what he eats, whether he drinks alcohol, lack of sleep, or other issues. Or it could be hypoglycemic seizures. Has he been tested for that? I also have Diabetes and sometimes low blood sugar can bring on a seizure if I'm not careful (that is if my glucose level is REALLY LOW). So I have to watch my diet carefully. But before messing with any of the diet issues, make sure he's getting the right meds for seizures.
That ketogenic diet is used mostly for children and is a very STRICT diet. I suggest you speak to your dr. BEFORE starting any diet.
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietary-therapies/ketogenic-diet
Now I live on my own, my kids are grown and on their own. I don't drive but live close to the Light Rail so I can get to most places by myself. I still have a CP seizure once in a while, but most people don't even notice so I can continue on with my day. I haven't had a bad TC in 10 years now. So once your son is stabilized on a medication, he should be ok to live alone eventually.
Hang in there.
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He's had a brain CT done and blood work, neither show any cause for his 2 seizures. They've already started him on Dilantin and he hasn't had another seizure since. That's the stressor not knowing if he's going to have another one or not. Do people normally have another seizure soon after they are diagnosed? His GP really didn't have much to say about it, just general info at best. It seems as though its up to us to educate ourselves about it.
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A GP isn't trained to treat seizures, so they really don't know how to answer your questions. Really tho, not even an epileptologist as an accurate answer. It is a guessing game. They will need to do an EEg and wait and watch. My seizures started "out of the blue" And yes, once they started they kept on. As the saying goes, seizures have a kindling effect. One really doesn't know if they will have another seizure or not. No dr. knows either.
Check out this website for additional info:
http://www.epilepsy.com/learn/epilepsy-101/will-i-always-have-seizures
Check out this website for additional info:
http://www.epilepsy.com/learn/epilepsy-101/will-i-always-have-seizures
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I had my first seizure when I was 27, 13 years ago, and living on my own. Luckily I'd been staying at my boyfriends house when I had it because it t was VERY bad, was rushed to the ER and I had to be put into an induced coma for a few weeks to get my brain to clam down, if that's how you want to put it, before they were able to get the seizure to stop. I didn't come home from the hospital for another month.
Everyone - dr, family and even myself didn't think it was safe to be living on my own so I had to move back home. For the next year, maybe longer, I was having daily seizures. Sometimes having to go to the ER. About 3 years later I moved in with my now husband. I'm at home a alone a good bit but I know that I'm probably having seizures when he's not here, when I have a complex partial I usually don't know that I've had one unless there's someone there to see it happen because I black out during them and don't know.
I'm taking meds and I have on average 5 seizures a month, that I know if because like I said I don't know that I've had them a lot of the times. The only thing that I do when I'm alone is stay away from the stove and oven. I've had several seizures while I've been cooking and came close to catching the place on fire, luckily my husband's been home when I've had them.
I can have seizures days in a row, once a week and I've gone a few weeks without one then all of a sudden there it is. Some people can go months and years between seizures and others can be like me.
I'll probably get arguments about this but since he's just been diagnosed he may want to move back home for a month just to see how things are going. After that then you can see how bad his seizures are and how often he may be having then then decide if he'd be ok on his own or not. I'm sure he will, many people do. They'll be able to give you some advice on things to do while living on your own.
Everyone - dr, family and even myself didn't think it was safe to be living on my own so I had to move back home. For the next year, maybe longer, I was having daily seizures. Sometimes having to go to the ER. About 3 years later I moved in with my now husband. I'm at home a alone a good bit but I know that I'm probably having seizures when he's not here, when I have a complex partial I usually don't know that I've had one unless there's someone there to see it happen because I black out during them and don't know.
I'm taking meds and I have on average 5 seizures a month, that I know if because like I said I don't know that I've had them a lot of the times. The only thing that I do when I'm alone is stay away from the stove and oven. I've had several seizures while I've been cooking and came close to catching the place on fire, luckily my husband's been home when I've had them.
I can have seizures days in a row, once a week and I've gone a few weeks without one then all of a sudden there it is. Some people can go months and years between seizures and others can be like me.
I'll probably get arguments about this but since he's just been diagnosed he may want to move back home for a month just to see how things are going. After that then you can see how bad his seizures are and how often he may be having then then decide if he'd be ok on his own or not. I'm sure he will, many people do. They'll be able to give you some advice on things to do while living on your own.
That is a sobering story, thank you so much for sharing it. That's the thing right now, it's so new and he hasn't had another seizure yet. I agree with you that he should live with someone until we have a better ideaof how bad or good things will be. The other crappy thing is that his life and home is 1400 kms away from any family support. Moving back would be difficult as a trial thing but we'll just have to sort that out when it comes. I just wanted to say again how helpful everyone's responses have been and please keep them coming.
Hi azr,
Here are a few things that can cause epilepsy:
trauma, family genes, drug or alcohol abuse, a bad blow to the head, a bad scare or bad dream, scar tissue on the brain and lack of oxygen or difficulties at birth or while you were carrying your son. For yrs. my Dr. thought it was lack of oxygen at birth that caused my seizures but after doing a wada test on me the Dr. was able to pinpoint the cause which was trauma that my mom went through while she was carrying me and in turn to many brain cells went over onto the right temporal lobe of my brain which in turn caused scar tissue.
Your son should have an e.e.g., MRI, PET and SPECT scan done and maybe a wada test to find out what has caused the seizures. Then the Dr. will know how to treat him better. I wish you and your son the best of luck and May God Bless the both of You!
Sue
Here are a few things that can cause epilepsy:
trauma, family genes, drug or alcohol abuse, a bad blow to the head, a bad scare or bad dream, scar tissue on the brain and lack of oxygen or difficulties at birth or while you were carrying your son. For yrs. my Dr. thought it was lack of oxygen at birth that caused my seizures but after doing a wada test on me the Dr. was able to pinpoint the cause which was trauma that my mom went through while she was carrying me and in turn to many brain cells went over onto the right temporal lobe of my brain which in turn caused scar tissue.
Your son should have an e.e.g., MRI, PET and SPECT scan done and maybe a wada test to find out what has caused the seizures. Then the Dr. will know how to treat him better. I wish you and your son the best of luck and May God Bless the both of You!
Sue
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Thank you very much arz. Luckily everyone isn't like me when it comes to epilepsy and seizures.
Different states have seizure free time spans before you are able to drive again. It's usually either 6 months or 1 year.
I'd really try to see if you can get into see a neuro in a shorter time than that since he just started having seizures. A neuro knows how to deal with epilepsy in detail and a general practitioner isn't.
If he doesn't want, or can't, move home is there someone that can move in with him or that he can move in with? This way he won't be alone but have someone there with him in case something would happen.
Another thing that can sometimes cause problems for people are the meds that you take. I did, but again not everyone was like me.
When you first start taking meds you may have side effects. They may not be bad ones and after a few weeks they might go away or you just get used to them. I'd been on several different meds before we found ones that worked. Some I found out I was allergic to and others actually caused me to have seizures.
Hope things are going good.
Different states have seizure free time spans before you are able to drive again. It's usually either 6 months or 1 year.
I'd really try to see if you can get into see a neuro in a shorter time than that since he just started having seizures. A neuro knows how to deal with epilepsy in detail and a general practitioner isn't.
If he doesn't want, or can't, move home is there someone that can move in with him or that he can move in with? This way he won't be alone but have someone there with him in case something would happen.
Another thing that can sometimes cause problems for people are the meds that you take. I did, but again not everyone was like me.
When you first start taking meds you may have side effects. They may not be bad ones and after a few weeks they might go away or you just get used to them. I'd been on several different meds before we found ones that worked. Some I found out I was allergic to and others actually caused me to have seizures.
Hope things are going good.
Carpentergirl
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Welcome Azr! I thought you would like to hear from someone who works on a ladder! 
I have had epilepsy for 15 years now! I work on a ladder, on the roof, on a scaffolding every single day! It can be done...but...it all depends on what kind of seizures you have. I would say that since you are in the very beginning of things, it is your best bet to play it safe for now and like everyone has said, find out through testing what kind of seizures he has..find out "his pattern"...I'm hoping that he has nocturnal seizures. That way, he will be able to continue working his job. I am able to continue my trade because my seizures always happen into the morning, and i'm usually just put out for a whole day because i'm so worn out and sick to my stomach that day....it's impossible for me to work that day...I have never had a seizure in the afternoon or evening ..always early in the morning in bed...and my neuro has never taken my license away from me because my seizures have always been in the same time of day...I do hope for the very best for you and your son...you have come to the right place...you will find so much love and support here, and answers...
I have had epilepsy for 15 years now! I work on a ladder, on the roof, on a scaffolding every single day! It can be done...but...it all depends on what kind of seizures you have. I would say that since you are in the very beginning of things, it is your best bet to play it safe for now and like everyone has said, find out through testing what kind of seizures he has..find out "his pattern"...I'm hoping that he has nocturnal seizures. That way, he will be able to continue working his job. I am able to continue my trade because my seizures always happen into the morning, and i'm usually just put out for a whole day because i'm so worn out and sick to my stomach that day....it's impossible for me to work that day...I have never had a seizure in the afternoon or evening ..always early in the morning in bed...and my neuro has never taken my license away from me because my seizures have always been in the same time of day...I do hope for the very best for you and your son...you have come to the right place...you will find so much love and support here, and answers...- Messages
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Hi AZR, welcome to CWE!
I had my first seizures out of the blue at age 35. I continued to live alone then and still live alone now (15 years later). An EEG soon after the initial seizures provided pretty strong confirmation that my seizures were epilepsy-related (as opposed to a one-off). Still, after 6 months of seizure control I tried tapering off medication (under doctor's supervision) -- but without success. It's become pretty clear that my seizures respond well to medication, so as long as I stay medicated I can remain independent.
As folks above have mentioned, an epilepsy diagnosis isn't automatically restrictive in terms of where and how you live and work. It mostly depends on what kind of seizure control your son achieves. It can take a bit of time to get a sense of how his brain and body will react to the meds. Everyone is different. It's a good sign that the Dilantin seems to be helping your son remain seizure-free, though it's too soon to draw any firm conclusions (which is one reason most states impose driving restrictions for 6 months or longer). I wish you and your son the best of luck.
I had my first seizures out of the blue at age 35. I continued to live alone then and still live alone now (15 years later). An EEG soon after the initial seizures provided pretty strong confirmation that my seizures were epilepsy-related (as opposed to a one-off). Still, after 6 months of seizure control I tried tapering off medication (under doctor's supervision) -- but without success. It's become pretty clear that my seizures respond well to medication, so as long as I stay medicated I can remain independent.
As folks above have mentioned, an epilepsy diagnosis isn't automatically restrictive in terms of where and how you live and work. It mostly depends on what kind of seizure control your son achieves. It can take a bit of time to get a sense of how his brain and body will react to the meds. Everyone is different. It's a good sign that the Dilantin seems to be helping your son remain seizure-free, though it's too soon to draw any firm conclusions (which is one reason most states impose driving restrictions for 6 months or longer). I wish you and your son the best of luck.
Beginning Life With Epilepsy!!!
azr,
I can understand why you are so concerned about your son's well being right now. Something else that you have to think about is that your son is 27, a home owner and living by himself. Some times a person who has just been diagnosed w/E can have severe problems if their life seems to be suddenly taken over by people who are all trying to help. For most people, this is easily accepted and thought of as 'if they want to do everything for me, I'll let them do it, this just means my life has gotten easier'. It also can have an effect on a person that was NEVER expected! If the person who has just been diagnosed suddenly feels as though they are losing control of their life because of these people wanting to do everything for them, they may begin having another type of reaction to this 'helpfulness'. This could actually cause panic attacks, anxiety attacks or several other things that were never the intent of the people who were trying to help. This is why any person who feels that they have to now help the person w/E needs to think about how what they want to do to help may affect the person being helped. Hopefully things like this happen totally by accident, but it can be better to think about what can possibly happen if something is done before actually doing it! :twocents:
I FORGOT, Welcome to CWE!!!!!
ACsHuman
azr,
I can understand why you are so concerned about your son's well being right now. Something else that you have to think about is that your son is 27, a home owner and living by himself. Some times a person who has just been diagnosed w/E can have severe problems if their life seems to be suddenly taken over by people who are all trying to help. For most people, this is easily accepted and thought of as 'if they want to do everything for me, I'll let them do it, this just means my life has gotten easier'. It also can have an effect on a person that was NEVER expected! If the person who has just been diagnosed suddenly feels as though they are losing control of their life because of these people wanting to do everything for them, they may begin having another type of reaction to this 'helpfulness'. This could actually cause panic attacks, anxiety attacks or several other things that were never the intent of the people who were trying to help. This is why any person who feels that they have to now help the person w/E needs to think about how what they want to do to help may affect the person being helped. Hopefully things like this happen totally by accident, but it can be better to think about what can possibly happen if something is done before actually doing it! :twocents:
I FORGOT, Welcome to CWE!!!!!
ACsHuman