1. < Epilepsy & Seizures
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Anyone have drop seizures, “eating epilepsy”?

Posted by alex1paul2 @alex1paul2, Apr 12, 2023

Hi to everybody! My son , 19, has a rare form of reflex epilepsy , called “eating epilepsy”, he has drop seizures almost every time he eats or drinks. His meds are Trileptal, Vimpat and Briviact. For some time he was a little better , while taking CBD 10%, but now it’s gotten worse… We are desperate because he is falling so often during the day, in fear of severe injuries . Any of you having eating epilepsy or drop seizures? Thank you !!!!!

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salpal01 | @salpal01 | Apr 17, 2023

Hi Alex
Seeing that epilepsy is stress related maybe if you cook him his favorite meals it might stop him stressing at meal times. It's probably an unusual suggestion but you never know ? It's amazing how the brain reacts to different situations

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alex1paul2 | @alex1paul2 | Apr 18, 2023
In reply to @salpal01 "Hi Alex Seeing that epilepsy is stress related maybe if you cook him his favorite meals..." + (show)
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Hi Alex
Seeing that epilepsy is stress related maybe if you cook him his favorite meals it might stop him stressing at meal times. It's probably an unusual suggestion but you never know ? It's amazing how the brain reacts to different situations

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Thank you!!Will definitely try 😉🙏

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jamessr | @jamessr | Apr 19, 2023

Mom,
Have tried any of the eatables CBD/THC gummy solutions, they come in different ratios. My son uses a 1:1 ratio . Can't say it won't stop his seizures but for my son's seizures there is a definite improvement. Don't know what state you live in so that might not be a solution. Another good reason to move to Florida.

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alex1paul2 | @alex1paul2 | Apr 19, 2023
In reply to @jamessr "Mom, Have tried any of the eatables CBD/THC gummy solutions, they come in different ratios. My..." + (show)
Profile picture for jamessr @jamessr

Mom,
Have tried any of the eatables CBD/THC gummy solutions, they come in different ratios. My son uses a 1:1 ratio . Can't say it won't stop his seizures but for my son's seizures there is a definite improvement. Don't know what state you live in so that might not be a solution. Another good reason to move to Florida.

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Thank you so much!!! We’re living in Greece, so moving to Florida is not really an option…😅 When my son tried 10%Cbd/2% THC he felt an increase in seizure intensity. and so CBD with very little THC is better tolerable for him. Do you feel that you have to get used to “high” THC concentration or did your son tolerated immediately?

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jamessr | @jamessr | Apr 19, 2023

That's a 5:1 ration which is pretty mild. I'm told users build up a tolerance to THC over time. My son tolerates the THC and seems to function well. I am not a doctor but it sounds like your son's seizures are stress related and mild sedative ie THC would relax him. I would not rule it out from his list of meds. Good luck

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alex1paul2 | @alex1paul2 | Apr 19, 2023
In reply to @jamessr "That's a 5:1 ration which is pretty mild. I'm told users build up a tolerance to..." + (show)
Profile picture for jamessr @jamessr

That's a 5:1 ration which is pretty mild. I'm told users build up a tolerance to THC over time. My son tolerates the THC and seems to function well. I am not a doctor but it sounds like your son's seizures are stress related and mild sedative ie THC would relax him. I would not rule it out from his list of meds. Good luck

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Thank you again! It’s really moving to get a response and from so far away😊 Tou helped me a lot! I wish the best for your son❤️

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kedwards1950 | @kedwards1950 | Aug 3 3:23pm

My daughter, now age 44, has a history of epilepsy having many types of seizures. For the past several years she has drop seizures at least 90% of the time while eating or before. She is on about 6 seizure meds and non has succeeded in making her seizure-free. I am wondering if there is something, a medication or activity, that can be used to lessen these occurances?

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alex1paul2 | @alex1paul2 | Aug 4 1:40am
In reply to @kedwards1950 "My daughter, now age 44, has a history of epilepsy having many types of seizures. For..." + (show)
Profile picture for kedwards1950 @kedwards1950

My daughter, now age 44, has a history of epilepsy having many types of seizures. For the past several years she has drop seizures at least 90% of the time while eating or before. She is on about 6 seizure meds and non has succeeded in making her seizure-free. I am wondering if there is something, a medication or activity, that can be used to lessen these occurances?

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I am really sorry, I think I know what you are going through…The med that has helped my son with the drops (without ongoing seizure) is Fenfluramin. He also tried Epidyolex but had to stop it due to side effects. My son still is having seizures during or after meals , he also is on 6 meds.
I wish you the best!!

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