Hey all,
just registered on here as I've been trying to find a decent community where I can talk about epilepsy and how I've been struggling to cope with it.
I'm from the UK, am 22 years of age and contracted epilepsy in 2011, from July onwards. I have always been perfectly healthy and a very active and sporty person. I was able to drive...do what I want. Over the years, I have played soccer, rugby and American Football as well as many other sports. Through heavy playing of the latter named contact sports, I had picked up a couple of previous minor concussions but in July 2011, whilst playing American Football here in England, I suffered a hit which resulted in my head colliding heavily with the floor. I picked up a concussion from that hit and then suffered from post concussion syndrome for the next two to three months.
During those months, there were periods where I felt very out of it, dazed and disorientated but put it down simply to the syndrome (mu neurologist later said he believed these to be complex partial seizures). However, late August/earl September, I suffered my first tonic-clonic seizure. Since then, they have been a consistent problem.
I can kind of sense when they're coming. I get weird sensations, very dreary and become quite sensitive to light and rub my eyes. I feel very emotional and get aggravated by the slightest movement or noise. I'm aware of this and when it happens I lay myself somewhere safe and moments later...often a matter of seconds...I lose consciousness and (from what I know from witness accounts), my muscles tend to contract in and then I shake uncontrollably. I don't remember anything after I lose consciousness and am not aware of anything going on around me.
When the seizures are over, I again feel very sensitive to light, sounds and feel very achy. My mood is often extremely bad, to the point where I get angry when people fuss around em, regardless of who they are. It only takes me 15 minutes or so to recover fully but I can feel very drained afterwards.
In October 2011 I was placed on a starting dose of 100mg of Lamotrigine a day.
However, this is where the real problems started. I got very down and didn't deal with the diagnosis very well or the change in lifestyle, despite assurances that once I was medicated properly I would be fine. I stopped consulting people close to me and hid my head in the sand. I felt like I couldn't take my medication, I didn't sleep properly and this only led to more seizures, making me feel even more down. I missed appointments and scans and got myself in a hole financially as I was unable to work in this period. I'm a plumber on construction sites therefore am unable to work on site whilst my epilepsy isn't under control. However bad it got, I didn't talk to anyone or let people know how I was feeling or the trouble that I was in. I felt like I couldn't get into a relationship because of my epilepsy and distanced myself from a lot of people. I stayed in a lot as well.
This year, I suffered from trichotillomania. A compulsive hair pulling disorder as a result of stress. I lost a lot of hair. Fortunately my friends rallied around me, shaved my hair and got me to stop. I still have the urge every now and then now I have grown my hair back but have much more control over this.
This month I moved back in with my Dad to help me get back on track. I've been taking the 100mg of Lamotrigine a day consistently now for a couple of months and have a new appointment with my neurologist...things feel a little better now it's all out in the open and I'm around people who can help me. I've also got into a relationship for the first time since I got hurt and she does a fantastic job dealing with it and helping me cope with it myself.
I do however still feel very down in general,not helped b financial stress but I even get these feelings when I'm with my girlfriend...even though at other times I'm unbelievably happy around her and normal. It's not a problem with our relationship, it's a problem with my mind. I still have seizures although they have subsided a little since I've been consistent with the medication. I still have anywhere between 10-20 a month...some months have been good and others bad.
I have started to notice a trend. They happen when I have a lot of emotional stress...if I have a row with someone or get upset. When I'm tired or exhausted they can be triggered also. They only ever really happen at night or at the weekends...I've never had one whilst asleep. I rarely have them in the day time but they do occur then every now and again.
Sorry to ramble on but I have one main question. What are the chances that I will get to the stage once more where I have it under full control? I worry that no matter what medication they put me on, I'm always going to have to deal with seizures every now and then...and if that means I can't drive for the rest of my life I don't know what I'll do!!!
Has anyone got any explanation as to why I got so down? Could his have been a result of the condition itself having an effect on me?
just registered on here as I've been trying to find a decent community where I can talk about epilepsy and how I've been struggling to cope with it.
I'm from the UK, am 22 years of age and contracted epilepsy in 2011, from July onwards. I have always been perfectly healthy and a very active and sporty person. I was able to drive...do what I want. Over the years, I have played soccer, rugby and American Football as well as many other sports. Through heavy playing of the latter named contact sports, I had picked up a couple of previous minor concussions but in July 2011, whilst playing American Football here in England, I suffered a hit which resulted in my head colliding heavily with the floor. I picked up a concussion from that hit and then suffered from post concussion syndrome for the next two to three months.
During those months, there were periods where I felt very out of it, dazed and disorientated but put it down simply to the syndrome (mu neurologist later said he believed these to be complex partial seizures). However, late August/earl September, I suffered my first tonic-clonic seizure. Since then, they have been a consistent problem.
I can kind of sense when they're coming. I get weird sensations, very dreary and become quite sensitive to light and rub my eyes. I feel very emotional and get aggravated by the slightest movement or noise. I'm aware of this and when it happens I lay myself somewhere safe and moments later...often a matter of seconds...I lose consciousness and (from what I know from witness accounts), my muscles tend to contract in and then I shake uncontrollably. I don't remember anything after I lose consciousness and am not aware of anything going on around me.
When the seizures are over, I again feel very sensitive to light, sounds and feel very achy. My mood is often extremely bad, to the point where I get angry when people fuss around em, regardless of who they are. It only takes me 15 minutes or so to recover fully but I can feel very drained afterwards.
In October 2011 I was placed on a starting dose of 100mg of Lamotrigine a day.
However, this is where the real problems started. I got very down and didn't deal with the diagnosis very well or the change in lifestyle, despite assurances that once I was medicated properly I would be fine. I stopped consulting people close to me and hid my head in the sand. I felt like I couldn't take my medication, I didn't sleep properly and this only led to more seizures, making me feel even more down. I missed appointments and scans and got myself in a hole financially as I was unable to work in this period. I'm a plumber on construction sites therefore am unable to work on site whilst my epilepsy isn't under control. However bad it got, I didn't talk to anyone or let people know how I was feeling or the trouble that I was in. I felt like I couldn't get into a relationship because of my epilepsy and distanced myself from a lot of people. I stayed in a lot as well.
This year, I suffered from trichotillomania. A compulsive hair pulling disorder as a result of stress. I lost a lot of hair. Fortunately my friends rallied around me, shaved my hair and got me to stop. I still have the urge every now and then now I have grown my hair back but have much more control over this.
This month I moved back in with my Dad to help me get back on track. I've been taking the 100mg of Lamotrigine a day consistently now for a couple of months and have a new appointment with my neurologist...things feel a little better now it's all out in the open and I'm around people who can help me. I've also got into a relationship for the first time since I got hurt and she does a fantastic job dealing with it and helping me cope with it myself.
I do however still feel very down in general,not helped b financial stress but I even get these feelings when I'm with my girlfriend...even though at other times I'm unbelievably happy around her and normal. It's not a problem with our relationship, it's a problem with my mind. I still have seizures although they have subsided a little since I've been consistent with the medication. I still have anywhere between 10-20 a month...some months have been good and others bad.
I have started to notice a trend. They happen when I have a lot of emotional stress...if I have a row with someone or get upset. When I'm tired or exhausted they can be triggered also. They only ever really happen at night or at the weekends...I've never had one whilst asleep. I rarely have them in the day time but they do occur then every now and again.
Sorry to ramble on but I have one main question. What are the chances that I will get to the stage once more where I have it under full control? I worry that no matter what medication they put me on, I'm always going to have to deal with seizures every now and then...and if that means I can't drive for the rest of my life I don't know what I'll do!!!
Has anyone got any explanation as to why I got so down? Could his have been a result of the condition itself having an effect on me?
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