Love and Understanding

[benrose]

Hello everyone. My name is Ben. I'm English, currently living in Sydney Australia. I'm 27 years old. I was diagnosed with epilepsy after I suffered my first Grand Mal seizure when I was 16 following an operation to remove a benign bone tumour from my skull. I have Grand Mal seizures approximately every 3 years (at stressful times of my life). To control my epilepsy I have tried Phenetoin, Tegretol, and I'm now on Keppra but will soon be trying a new drug as I recently had two seizures, making a total of 3 in the past 9 months (two after flights, hence I am staying in Australia until my epilepsy is under control). I count myself lucky that I am ok after the few days recovery period and that I don't have seizures more often, although it can be upsetting to think about having epilepsy. I suffer from short term memory loss, as well as several other side effects of the keppra. I have never seen anybody have a Grand Mal seizure even though I have had several myself (usually at night or late in the evening). I have found a little bit of love and understanding helps to keep positive about living.

 

[CQ:)]

Hi Ben

Nice to meet you. What's the name of the new drug that you'll be trying? I hope it helps you.

I also try not to let my epilepsy get me down to much & stop me from doing to things. If I ever have bad days I remember there are people who do have disabilities and need constant care so I should be lucky.

My memory is also not as good as it used to be. I sometimes also forget simple words, usualy after I have had a long day or if I am getting tired.

 

[Bernard]

Hi Ben, welcome to the forums. :hello:

Stacy had a lot of trouble with her memory and cognitive skills following seizure clusters. The longer time went by without seizures, the better her memory and brain functions got (until they returned to normal). I'm guessing your memory can return to normal too.

There are many types of seizures (not just grand mal). If you are having memory problems, it's possible you are experiencing some other seizure types. In any event, it sounds like Keppra isn't the solution for you.

 

[brain]

:hello: Mate!

Glad to have you here Ben! I have permanent
difficulties with short term memory, but not with
long term memory, until I had several bad MVA's
(motor vehicle accidents) which resulted head
trauma where my memory sometimes can be really
messed up during seizure phases, and when I'm not
in seizure mode; it's not too bad, I have my share of
ups and downs.

BUT we're thrilled to have you here!! :star:

 

[benrose]

Hello!

Hi Ben

Nice to meet you. What's the name of the new drug that you'll be trying? I hope it helps you.

I also try not to let my epilepsy get me down to much & stop me from doing to things. If I ever have bad days I remember there are people who do have disabilities and need constant care so I should be lucky.

My memory is also not as good as it used to be. I sometimes also forget simple words, usualy after I have had a long day or if I am getting tired.

Nice to meet you too, my first contact on my first forum.

I'm not yet sure of the new drug I will be starting soon. I will be glad to gradually come off the Keppra. Although some of the side effects are welcome, such as I have more energy in the mornings now and I have lost a bit of of weight (needed to, not any more!).

I share your desision not to let anything get in your way. Dispite everything, I value my health. I came to Australia to escape from the painful headaches caused by the cold weather in England, and now I don't get headaches (except for when I've had seizures obviously). Also I came here to start a new life while exploring more of the world. My memory used to be so bad I couldn't read even a few words on a page before I would forget all the words and what the book is. Not good when you're training to be an actor. However, I managed to appear on TV and in Films, such as "Harry Potter 3 - The Prisoner of Azkaban" as an extra. After improvements in my memory, I eventually became the Manager of a London Theatre (after 12 years working my way up). Determination is an understatement. People don't seem to understand how much they can acheive when they put their mind to it. I also wanted to be a singer, but even now find it almost impossible to remember the words to any song. Howerever, I have won many Karaoke competitions (words come up for you!). I even travelled to Copenhagen while I was in a London Choir (other choir member's singing helped me to sing) before my move to Oz.

I talk a lot, as you can see. Job interview now so I'll try and talk more later.

Take care,

Ben

 

[Bernard]

:rock:

 

[benrose]

Hello!

Hi Ben, welcome to the forums. :hello:

Stacy had a lot of trouble with her memory and cognitive skills following seizure clusters. The longer time went by without seizures, the better her memory and brain functions got (until they returned to normal). I'm guessing your memory can return to normal too.

There are many types of seizures (not just grand mal). If you are having memory problems, it's possible you are experiencing some other seizure types. In any event, it sounds like Keppra isn't the solution for you.

Hi Bernard,

I have just had an EEG and am due to see my new neurologist in a week or so after another test. I'm suffering from an uncontrolable wobbly chin, which may be something to do with my epliepsy. I've had it before but not this bad (sometimes goes for hours). All will be ok soon I'm sure.

Ben

 

[Stacy]

Hi Ben,

Epilepsy is a pain in the ...ss. However, I've come to terms with it and figured it out... mostly. Read this book: Epilepsy. What medicine can do for you and what you can do for yourself, by Adrienne Richard & Joel Reiter, M.D. I found it to be very helpful, especially the part about keeping your own journal. I can talk all day too, so I'm getting off.

Hope your interview went well. Welcome to the forum.

 

[POSITIVEPERSON]

Hi Ben : Welcome to the boards, I have had memory loss and it has usually returned with a change of meds. I never worried about it much. I am now following one of the diets Bernard and Stacy list and I take homeopathy med instead of AED 's I have run out of AED. Let us know about your new med , you have anyone curious which med your getting. LOL
Riva

 

[benrose]

Hello!

:hello: Mate!

Glad to have you here Ben! I have permanent
difficulties with short term memory, but not with
long term memory, until I had several bad MVA's
(motor vehicle accidents) which resulted head
trauma where my memory sometimes can be really
messed up during seizure phases, and when I'm not
in seizure mode; it's not too bad, I have my share of
ups and downs.

BUT we're thrilled to have you here!! :star:

Hi Brain,

Sorry to hear about your memory problems. My memory has not been the same since my first seizure in October 1996. It has gradually got much better, worse around seizures.

I'm thrilled to have found this site!

Ben

 

[benrose]

Hello!

Hi Ben,

Epilepsy is a pain in the ...ss. However, I've come to terms with it and figured it out... mostly. Read this book: Epilepsy. What medicine can do for you and what you can do for yourself, by Adrienne Richard & Joel Reiter, M.D. I found it to be very helpful, especially the part about keeping your own journal. I can talk all day too, so I'm getting off.

Hope your interview went well. Welcome to the forum.

Hi Stacy,

I still find reading difficult, but I very much appreciate your reccommendation and will definitely try to get hold of that book. Might take me a while to get through reading it but I will eventually. Thank you. Interview went very well, should hear something later today. Fingers crossed!

Ben

 

[benrose]

Hi Ben : Welcome to the boards, I have had memory loss and it has usually returned with a change of meds. I never worried about it much. I am now following one of the diets Bernard and Stacy list and I take homeopathy med instead of AED 's I have run out of AED. Let us know about your new med , you have anyone curious which med your getting. LOL
Riva

Hi Riva

I will let everyone know what my new meds will be as soon as I know! I am a little aprehensive as to what the new side effects may be. I was fine on Keppra at first, but started on a very low dose. Every time I had another seizure my dose was increased, now I have more frequent seizures and am experiencing lots of side effects. Time for change I think. I will have a look at my diet too, maybe that will help.

Good to find this site.

Ben

 

[CQ:)]

I'm sure you'll like it here Ben. I only joined recently but everyone I've spoken to has been really helpful and nice.

I hope you have some luck with your new meds.

I have trouble having things stay stuck in my head, I am interested in working in administration area and wherever I have worked (whether its been paid or voluntary) I've always found it easier to write things down when I was taking messages. At one organisation that I volunteered at I used to carry a pen and paper with me everywhere so if someone asked me to do something I could just write it down lol.

Someone once sent me some info on epilepsy which included a list of famous people who have or had epilepsy. There were 9 actors who had epilepsy (3 of them were Australian).

Good luck with your interview.

 

[benrose]

Jobs

Hey guys,

My 2nd interview today must have gone very well indeed (I don't remember much about it, LOL!); Just had a call and they've offered me a position to start Monday with an increase in pay! They think I have the potential to be a "Top Performer" and will offer me sponsorship if I do well after 3 months. That means I get to stay in Australia where I have considerably fewer headaches (thanks to the better weather in Sydney).

:clap:

Have faith everyone. Believe in yourselves.

Ben :tup:

 

[CQ:)]

Hey guys,

My 2nd interview today must have gone very well indeed (I don't remember much about it, LOL!); Just had a call and they've offered me a position to start Monday with an increase in pay! They think I have the potential to be a "Top Performer" and will offer me sponsorship if I do well after 3 months. That means I get to stay in Australia where I have considerably fewer headaches (thanks to the better weather in Sydney).

:clap:

Have faith everyone. Believe in yourselves.

Ben :tup:

That's great news Ben :tup:

hope the job gos well & you enjoy it.

 

[Bernard]

Sounds great Ben. Cheers.

 

[Blessed]

Hi Ben,

So glad to hear the good news about your job. Congratulations! I read with interest your post about being an actor and an singer and CQ's response. My degree is in Musical Theatre and I teach music and drama to children. I also write and direct plays. I read somewhere that epilepsy can run in creative people. What do you think? There are several other musicians on this forum if I am not mistaken.

Have a great day!

Blessed
Juvenile Myoclonic Epilepsy since 1982
25 mg. Zonegran

 

[POSITIVEPERSON]

Congrats Ben on your new job!!!!!!!! Wishing you the best of luck!!!!!!!!!!!


Riva

 

[benrose]

Hello Blessed!

Hi Ben,

So glad to hear the good news about your job. Congratulations! I read with interest your post about being an actor and an singer and CQ's response. My degree is in Musical Theatre and I teach music and drama to children. I also write and direct plays. I read somewhere that epilepsy can run in creative people. What do you think? There are several other musicians on this forum if I am not mistaken.

Have a great day!

Blessed
Juvenile Myoclonic Epilepsy since 1982
25 mg. Zonegran

Maybe there is some connection between epilepsy and creativity. However, I know many people without epilepsy who are very creative also. I used to play the violin in an ochestra, but after problems with my short term memory I haven't been able to read music fast enogh to play again. I still have my violin back in England, so who knows I may play it again one day. I tend to write songs now, and I am a keen singer (at karaoke as the words come up).

Take care,

Ben

 

[benrose]

Thank you

Congrats Ben on your new job!!!!!!!! Wishing you the best of luck!!!!!!!!!!!


Riva

Thanks Riva!