Hi, my son is 16 and has been suffering from epilepsey since the onset of puberty, about four years ago. he has specific triggers which seem to evoke a blank expression from his consultant and I am hoping to find others here who may have the same sympoms and possibly some answers. I live in the UK but feel that posting on an international forum will help me to understand what research is being carried out globally....well, outside of the UK at least.
support needed
- Thread starter crannsmum
- Start date
Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!
Endless
Even Keel
- Messages
- 4,466
- Reaction score
- 3
- Points
- 0
Crannsmom,
Welcome to CWE!
What a great mom you are, to research and look for answers. Lots of us have found that we need to look outside our doctors to get all the information we need. Triggers are a big topic of conversation in here.
What are your son's triggers? Knowing will help the members share the right information with you.
To read about triggers in general.... Across the top of the page there is a strip of red (or is that brown?) words. One of them is "search." Click on that to search the forum for the word "trigger." You'll get a ton of strings to read and look at where there is at least some conversation around seizure triggers. You can also search on the specific triggers your son experiences.
There are lots of moms in here who can share their experiences, and members in their teens, too. Eventually your son may want to join, too.
I am very glad you are here.
Welcome to CWE!
What a great mom you are, to research and look for answers. Lots of us have found that we need to look outside our doctors to get all the information we need. Triggers are a big topic of conversation in here.
What are your son's triggers? Knowing will help the members share the right information with you.
To read about triggers in general.... Across the top of the page there is a strip of red (or is that brown?) words. One of them is "search." Click on that to search the forum for the word "trigger." You'll get a ton of strings to read and look at where there is at least some conversation around seizure triggers. You can also search on the specific triggers your son experiences.
There are lots of moms in here who can share their experiences, and members in their teens, too. Eventually your son may want to join, too.
I am very glad you are here.
alivenwell
Veteran
- Messages
- 1,604
- Reaction score
- 0
- Points
- 156
That's an awkward age with hormonal changes, a potential voice change, seeing all of one's friends start to drive, trying to fit in socially, living a 'clean' life without smoking, drinking, and many other stressors. Personally, I escaped into my music, reading, art and math (weird, I know). I was treated differently by some students and teachers. Some were over-protective, some were nonchalant, and some were downright discriminatory. Some were simply accepting of the epilepsy. He's probably had some of these emotional experiences over his brief life. I had a dog who was my very, very best friend on both good and bad days.
Maybe he can try the gluten-free diet or look for food/drink without some of the additives like caffeine, ginkgo biloba, ginseng, just to name a few. Some people in here strongly believe in neurofeedback. It may help him as well.
At that age, I was on Dilantin combined with phenobarbital which worked pretty well, with the exception to the occasional flu that I'd get from others. Personally, I strongly feel in favor of brand name only medications.
There is the possibility that he has experienced 'kindling'. Once one seizure starts, it takes a while to prevent the next one even if one is faithful with medication. It's like a storm that eventually slows down again, but it takes a lot of patience. For me, that would last for an average of one week.
It's a catch-22. If he worries about that next seizure, that stress could actually cause another seizure. It becomes a vicious emotional cycle. I'd suggest that he listen to soothing music, or find something that helps him release his stress.
My new stress relief right now is an intense workout with strength training alternating with brisk walking or 'cardio'. There are stress hormones that just wreak havoc with epilepsy.
Maybe he can try the gluten-free diet or look for food/drink without some of the additives like caffeine, ginkgo biloba, ginseng, just to name a few. Some people in here strongly believe in neurofeedback. It may help him as well.
At that age, I was on Dilantin combined with phenobarbital which worked pretty well, with the exception to the occasional flu that I'd get from others. Personally, I strongly feel in favor of brand name only medications.
There is the possibility that he has experienced 'kindling'. Once one seizure starts, it takes a while to prevent the next one even if one is faithful with medication. It's like a storm that eventually slows down again, but it takes a lot of patience. For me, that would last for an average of one week.
It's a catch-22. If he worries about that next seizure, that stress could actually cause another seizure. It becomes a vicious emotional cycle. I'd suggest that he listen to soothing music, or find something that helps him release his stress.
My new stress relief right now is an intense workout with strength training alternating with brisk walking or 'cardio'. There are stress hormones that just wreak havoc with epilepsy.
Last edited:
thanks for the support, I have posted in the kitchen and got some good responses. 90% of my son's seizures are triggered by eating, the other 10% is up for debate!! ( they happen at shcool so it's harder to work out the exact triggers) but I suspect they are still related to digestion. this site has already given me some good pointers and lots to think about so please keep coming with any suggestions or thoughts.