HI, I am new to this forum. I am hoping to find out more information about alternative therapies for epilepsy for my son. He is on Trileptal and is close to the max dose of 2400 mg. He is at 2100 mg. He has usually had good control on this AED. But the seizures return every 3 years almost like a cycle that mirrors a growth spurt. He is 16 yrs old. We were on the GAPS diet 3 yrs ago and that seemed to help a lot and we added magnesium and we use frankensence to stop the seizure if we get to him in time. He breathes that in and it stops. We are looking at vision therapy, neuro development therapy and neuro bio feedback. I have seen many posts about neuro bio feedback but nothing after they try it. Does that mean it worked and they are seizure free and therefore don't need the forum anymore? I have sent a few questions to a few people on the forum but no one has responded. If you have tried any other therapies that have worked, please respond. Thank you.
New here plse help
- Thread starter mom1
- 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!
Hi and welcome! I have had epilepsy since age 12 and now I am 56 and the only thing I've tried is medication and a vagal nerve stimulator(just got my second one in 10 years 18 days ago). I've been on many medications and some worked better than others and many of course have side effects. I have never tried any alternative therapies. I was wondering why the alternative therapies? I've been told that uncontrolled seizures usually get worse with age like mine did. I take Depakote, Carbatrol and have the VNS. Do you have a good neurologist? I see an epileptologist in Chicago at Rush and had video eegs there. I think you are asking good questions but I think the majority of people with seizures find medication is the only route for treatment. I wish you the best of luck. Jeanne
Hi mom1,
Welcome to CWE! I found out I was drug resistant to all seizure meds out on the market right now after having a DNA test done so my Epileptologist told me to start using CBD (medical marijuana) and it has worked great reducing seizures for me. Other things I have been doing over the past few yrs. is putting coconut oil on my skin once a day the coconut oil builds up ketones in my body which in turn reduces my seizures. The other thing I do is take vitamin B12 1000 mcg. once a day vitamin B12 helps calm the nerves down a lot. I've had epilepsy for 45 yrs. and had 2 surgeries to help reduce my seizures but I had the least amount last yr. after I started the cbd oil. I just buy it in a mouth spray and squirt it twice a day in my mouth and I was amazed at how good it worked. If you are interested check out healthy hemp oil.com
In regards to vision therapy you should ask your son's neuro to do a special e.e.g. on him where the flash different color strobe lights one at a time by doing this they can see if certain colors are triggering his seizures. I found that florescent green, amber and bright white like when the sun shines on the snow were the 3 colors that triggered seizures for me. This is known as being photosensitive. I wish you and your son the best of luck and May God Bless the Both of You!
Sue
Welcome to CWE! I found out I was drug resistant to all seizure meds out on the market right now after having a DNA test done so my Epileptologist told me to start using CBD (medical marijuana) and it has worked great reducing seizures for me. Other things I have been doing over the past few yrs. is putting coconut oil on my skin once a day the coconut oil builds up ketones in my body which in turn reduces my seizures. The other thing I do is take vitamin B12 1000 mcg. once a day vitamin B12 helps calm the nerves down a lot. I've had epilepsy for 45 yrs. and had 2 surgeries to help reduce my seizures but I had the least amount last yr. after I started the cbd oil. I just buy it in a mouth spray and squirt it twice a day in my mouth and I was amazed at how good it worked. If you are interested check out healthy hemp oil.com
In regards to vision therapy you should ask your son's neuro to do a special e.e.g. on him where the flash different color strobe lights one at a time by doing this they can see if certain colors are triggering his seizures. I found that florescent green, amber and bright white like when the sun shines on the snow were the 3 colors that triggered seizures for me. This is known as being photosensitive. I wish you and your son the best of luck and May God Bless the Both of You!
Sue
- Messages
- 5,811
- Reaction score
- 827
- Points
- 268
I have read on here that seizures can be brought on when a child goes through the different stages of puberty. As his body develops could be a reason that his seizures are brought on every 3 years and medicine changes could be needed due to this. I wasn't diagnosed with epilepsy until I was in my late 20's so I can't really give you any advice or information about this but I'm sure others who have had experience with this can.
There is no cure for epilepsy so no matter what you do or try won't stop them. It's possible that the number of seizures a person has can be reduced but there's always the chance that he could go a few days or a few years without having a seizure then have one.
In the 14 years that I've had epilepsy have tried several different meds and I've got a VNS implant, I'm not able to have surgery. I went from having almost a seizure a day in the beginning to having on average 5 a month now.
I've gotten a lot of good advice and help from this forum and I hope you do to. Nice to meet you!
There is no cure for epilepsy so no matter what you do or try won't stop them. It's possible that the number of seizures a person has can be reduced but there's always the chance that he could go a few days or a few years without having a seizure then have one.
In the 14 years that I've had epilepsy have tried several different meds and I've got a VNS implant, I'm not able to have surgery. I went from having almost a seizure a day in the beginning to having on average 5 a month now.
I've gotten a lot of good advice and help from this forum and I hope you do to. Nice to meet you!
- Messages
- 17,355
- Reaction score
- 755
- Points
- 263
Hey mom1, welcome to CWE!
NFB treatment is appealing (esp. becasue of the minimal to zero side effects), but unfortunately there haven't been enough studies to confirm that it works on a large-scale basis. Given how diverse epilepsy is, I have a feeling that nfb works for some, but it may not be appropriate for others. Here is one success story you might be interested in: http://mind-braintraining.com/Page.html
NFB treatment is appealing (esp. becasue of the minimal to zero side effects), but unfortunately there haven't been enough studies to confirm that it works on a large-scale basis. Given how diverse epilepsy is, I have a feeling that nfb works for some, but it may not be appropriate for others. Here is one success story you might be interested in: http://mind-braintraining.com/Page.html
seizures4ever
New
- Messages
- 475
- Reaction score
- 0
- Points
- 0
Hi, I was diagnosed at 16, although it turns out I had undiagnosed seizures almost my entire life. I have tried nearly every medication and I have the VNS. I am not a good candidate for surgery. I have also tried biofeedback; it did not really produce noticeable results. I even tried the ketogenic diet and measured everything/counting carbs. I didn't really notice any changes, but I'm going to give this diet one more try.
Much like your son, I have to get my meds. changed every 3-5 years. Just like with any other drug, your body builds up a tolerance to the medication. Finally, you get to a point where you are at the maximum possible dose.
Your son's seizures may be hormonal...like I said, I was finally diagnosed at 16 (when my female hormones were changing), but I would also encourage you to consider that he may just be hitting his "tolerance" threshold around every 3 years.
And for the record, my VNS did significantly reduce my complex-partial seizures although it hasn't done much for my simple-partial. I average about 5 cps a month now, and my meds. control my tcs. Best of luck and welcome! :e:
Much like your son, I have to get my meds. changed every 3-5 years. Just like with any other drug, your body builds up a tolerance to the medication. Finally, you get to a point where you are at the maximum possible dose.
Your son's seizures may be hormonal...like I said, I was finally diagnosed at 16 (when my female hormones were changing), but I would also encourage you to consider that he may just be hitting his "tolerance" threshold around every 3 years.
And for the record, my VNS did significantly reduce my complex-partial seizures although it hasn't done much for my simple-partial. I average about 5 cps a month now, and my meds. control my tcs. Best of luck and welcome! :e: