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New approach to Treating Drug-Resistant Epilepsy

Posted by Chris Gautier, Volunteer Mentor @santosha, Apr 24, 2025

Hi, good evening to all!
Just wanted to share with you this article about a new study by researchers at Mayo Clinic that brings new hope for those with refractory epilepsy.
https://newsnetwork.mayoclinic.org/discussion/new-study-in-brain-communications-finds-personalized-deep-brain-stimulation-shows-promise-for-drug-resistant-epilepsy/
https://www.cureepilepsy.org/news/mayo-clinic-study-highlights-a-new-approach-to-treating-drug-resistant-epilepsy/
Chris (@santosha)

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for laura
laura | @laura1961 | Jan 20 1:52am
In reply to @santosha "@laura1961 Hi Laura I completely understand that feeling of wanting to give up on doctors. But..." + (show)
Profile picture for Chris Gautier, Volunteer Mentor @santosha

@laura1961
Hi Laura
I completely understand that feeling of wanting to give up on doctors. But as I shared in my post, I'm so glad I kept searching until I found the right doctor to truly care for me. It made all the difference.
Several members of our group have been treated at Mayo Clinic and might be able to share their experiences with you: @dannoyes, @keeg1010, @royanthony, @tchandos, @absentsenior, and @patrassi. Feel free to reach out to them if you'd like to hear their perspectives.
Since you're in Australia, it would be wonderful to find a good epileptologist closer to home. Mayo Clinic might also be able to refer you to a specialist in Australia.
Please, keep persisting!
Chris

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@santosha Thank you for those links I have seen the 1st member but will take a further look at the others too.

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laura | @laura1961 | Jan 20 2:24am
In reply to @keeg1010 "@laura1961 I completely agree with Chris. It can be extremely frustrating and overwhelming when you feel..." + (show)
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@laura1961
I completely agree with Chris. It can be extremely frustrating and overwhelming when you feel like the doctors aren't helping. My advice is to never give up. Keep fighting until you find the doctor who understands and is knowledgeable about what you're going through and knows how to help. We were very lucky to be able to get in with Mayo Clinic. They have been wonderful and are very thorough. My son also has the diagnosis of Mesial Temporal Sclerosis and didn't start having seizures until adulthood. We have been through so many doctors, I've lost count. However, once you find the one, your life will change and your stress will decrease. I'm glad you found this group. Everyone here is very helpful, encouraging, and dedicated. You have friends here that are on your side. I wish you luck and as always, feel free to reach out if you have questions.
Take care,
Kerry

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@keeg1010 Thank you so much for the encouragement I really appreciate you and other members understanding where I am coming from regarding the TBI

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keeg1010 | @keeg1010 | Jan 20 3:55pm

@laura1961
You are very welcome. You will find that you have a family here so always know that you're not alone. We may not have all the answers but we'll always help any way we can.
Kerry

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lynnelw | @lynnelw | Jan 20 4:51pm

My great respect for Mayo Clinic. Most especially for its Neurology Department. I thank the Lord for all their graciousness and kindness to not just me, but more people who have been, are and can be blessed with their exceptional care!

I wish you all better... Just like I wish for myself.

Thank you Mayo Clinic for continuing your hard work and gaining knowledge to help those of us with this incomparable (to other) disease(s).

Sincerely,

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Chris Gautier, Volunteer Mentor | @santosha | Jan 22 2:51pm
In reply to @dannoyes "Thank you so much for sharing because I am reaching that point where they've tried six..." + (show)
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Thank you so much for sharing because I am reaching that point where they've tried six different AE drugs with little success. I will share this with my Mayo team to get their feedback.

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@dannoyes
Hi Dan,
Looking back at our discussion about this new approach, I've been wondering if you had a chance to bring it up with your Mayo doctor. I'd love to hear what he or she thought!
Chris

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Dan Noyes | @dannoyes | Jan 25 2:11pm

@laura1961 I was heartbroken to read your post, but I think it's all something we have had to face in our epilepsy journey. I heard the same thing about wearing a helmet and the warnings that I'd die if I had another fall (TBI). I was constantly living in fear. At a certain point, I just had to accept my life as it is and make the best of it, with the best medical team I could find standing by my side. Mayo removed over half my medications and I actually have significantly less seizures. They told me I can't be totally off my meds, but they found just the right combination. I did have two seizures yesterday. One was while I slept, but you know I woke up so life is good.

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Chris Gautier, Volunteer Mentor | @santosha | Feb 2 8:53am
In reply to @dannoyes "@laura1961 I was heartbroken to read your post, but I think it's all something we have..." + (show)
Profile picture for Dan Noyes @dannoyes

@laura1961 I was heartbroken to read your post, but I think it's all something we have had to face in our epilepsy journey. I heard the same thing about wearing a helmet and the warnings that I'd die if I had another fall (TBI). I was constantly living in fear. At a certain point, I just had to accept my life as it is and make the best of it, with the best medical team I could find standing by my side. Mayo removed over half my medications and I actually have significantly less seizures. They told me I can't be totally off my meds, but they found just the right combination. I did have two seizures yesterday. One was while I slept, but you know I woke up so life is good.

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@dannoyes
Hi Dan,
Thank you so much for the update and your message to @laura1961 !
I recently heard something that really stuck with me: "Either you give in to fear and it wins, or you face your fear and you win." Our minds can truly be our greatest ally or our toughest challenge.
I'm sorry to hear you had two seizures late January, but I love your perspective: 'I woke up so life is good.' That resilience is powerful!
Chris

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laura | @laura1961 | Feb 2 2:10pm
In reply to @dannoyes "@laura1961 I was heartbroken to read your post, but I think it's all something we have..." + (show)
Profile picture for Dan Noyes @dannoyes

@laura1961 I was heartbroken to read your post, but I think it's all something we have had to face in our epilepsy journey. I heard the same thing about wearing a helmet and the warnings that I'd die if I had another fall (TBI). I was constantly living in fear. At a certain point, I just had to accept my life as it is and make the best of it, with the best medical team I could find standing by my side. Mayo removed over half my medications and I actually have significantly less seizures. They told me I can't be totally off my meds, but they found just the right combination. I did have two seizures yesterday. One was while I slept, but you know I woke up so life is good.

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@dannoyes Thank you Dan for your reply & encouragement. Chris is right in what she says not to give into fear. This is something which has only really started with me since my fall & fracturing my spine. I had 2 more falls after that & they found another 6 fractures. I am glad I can still walk & have not given up either. I got myself back to exercising about 8 months after all that. I am feeling so much better & will just keep pushing on & staying positive.

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Dan Noyes | @dannoyes | Feb 3 8:36am

Hi Laura @laura1961 , it is truly incredible to hear that you’re back to exercising after everything you’ve been through. Fracturing your spine and then facing more falls takes immense strength—both physically and mentally. Your determination to keep pushing and stay positive is such an inspiration to the rest of us here. We’re all rooting for you!

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laura | @laura1961 | Feb 4 12:39am
In reply to @dannoyes "Hi Laura @laura1961 , it is truly incredible to hear that you’re back to exercising after..." + (show)
Profile picture for Dan Noyes @dannoyes

Hi Laura @laura1961 , it is truly incredible to hear that you’re back to exercising after everything you’ve been through. Fracturing your spine and then facing more falls takes immense strength—both physically and mentally. Your determination to keep pushing and stay positive is such an inspiration to the rest of us here. We’re all rooting for you!

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@dannoyes Thank-you Dan - I just keep going as I have NO other choice really. I also have my mum in a Care Home here in Australia so I have to keep an eye on her.

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