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  #1  
Old 07-13-2018, 02:28 AM
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Weirdom, had seizures now everyday for 20 plus years .


Having seizures everyday for 20 plus years. I can't seem to get used to them. It seems new every time.,I have a VNS unit that doesn't help. The meds don't either! Any suggestions. I'm a 40 yr old single Father who just lost my Son. Need some help.
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Old 07-13-2018, 08:16 AM
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Hew Sweetroll, welcome to CWE.

So sorry for the loss of your son. Please feel free to talk things out and vent here on the forum. I hope we can help.

As for your seizures, I assume you have been through all the traditional options with your neurologist -- different meds and med combos, VNS (obviously), surgery, etc. One CWE member who tried the VNS unsuccessfully had it switched it off and then found seizure control by taking his med three times a day instead of twice (go figure!). Some have seen benefits from dietary approaches. And recently many members have reduced their seizures using CBD oil. You night want to consider some of these options.

best of luck,
Nakamova
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Old 07-13-2018, 03:22 PM
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Hi Sweetroll,

Welcome to the forum! Sorry to hear about your son along with all the seizures. I tried over 10 different meds and then my Dr. did a DNA test on me and found I was drug resistant so I started using cbd oil and that has done wonders for me. Then this past Feb. I was trying to lose weight so I started taking 2 Tablespoons of organic apple cider vinegar with mother in it and I am amazed to say the vinegar has stopped 50% of my seizures.
If you aren't seeing a Epileptologist yet you may want to check into seeing one. I also had surgery done over 20 yrs. ago and that helped a little until I went on Neurontin which caused status seizures. I have found cutting back on carbs and starch foods also a big help reducing seizures. I wish you the best of luck and May God Bless You!

Sue
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Old 07-13-2018, 04:45 PM
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Originally Posted by Porkette View Post:
Hi Sweetroll,

Welcome to the forum! Sorry to hear about your son along with all the seizures. I tried over 10 different meds and then my Dr. did a DNA test on me and found I was drug resistant so I started using cbd oil and that has done wonders for me. Then this past Feb. I was trying to lose weight so I started taking 2 Tablespoons of organic apple cider vinegar with mother in it and I am amazed to say the vinegar has stopped 50% of my seizures.
If you aren't seeing a Epileptologist yet you may want to check into seeing one. I also had surgery done over 20 yrs. ago and that helped a little until I went on Neurontin which caused status seizures. I have found cutting back on carbs and starch foods also a big help reducing seizures. I wish you the best of luck and May God Bless You!

Sue
Vinegar! We'll I might have to try that one. How does the stuff taste? As far as meds go, I think I'm resistant to everything they give me.

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Old 07-13-2018, 05:53 PM
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Hi Sweetroll,

The vinegar tastes very sour and it also burns when you first swallow it. If you do try this be sure to drink a glass of water right after you swallow the vinegar or you will have a bad taste in your mouth. Also you may want to check with your pharmacist to make sure it won't interact with any seizure med. Wishing you only the best of luck and May God Bless You!

Sue
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Old 07-13-2018, 06:00 PM
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Thanks I'll look into it.
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Old 07-18-2018, 01:06 AM
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I'm getting mine out when this battery dies. It's my 3rd one 1st one lead detached now I looked like I made a gangster mad with the new scar. I can't even get my VNS to a proper working level, because it gags me until I throw up. I am so tired of it. What is the diet about? Thanks everyone.

Last edited by Sweetroll; 07-18-2018 at 01:19 AM.
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Old 07-18-2018, 02:51 PM
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Hi Sweetroll,

The diet I have been on is the ketogenic diet it's been out since 1927 and it helps reduces and in some cases stop seizures. The diet is high in fat but low in carbs and starch foods. Right now I have to eat 4 grams of fat to ever gram of protein this in turn builds ketones up in a persons body which helps reduce the seizures. You also will be burning off the fat for energy instead of carbs and starch foods. You can have your family Dr. refer you to see a Dietician and start the diet or you can go on it by yourself but you have to do it very slowly. I lost 70 lbs. in 4 months while on the diet and I had to go off of it for awhile because I lost to much weight. I cook with oil olive and butter and I have to cut back on the sweets but I'm allowed to have a slice of cheesecake.
You can buy the book titled "The Epilepsy Diet Treatment" By Dr. John Freeman which explains all about this diet you can also go on line and check out ketogenic diet which will give examples. I wish you the best of luck and May God Bless You!

Sue
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Old 07-18-2018, 02:56 PM
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Thanks, it may not be for me. I only weigh 129 I'm 5'9" I should have more weight on me. I don't ever want to eat.
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Old 07-22-2018, 10:08 PM
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My sister in law, who also has epilepsy, started the Keto diet mainly to lose weight. She said that it has helped with her seizures but she's also lost over 60lbs since she's been on it.

I'm going through another medical condition right now and I don't want to eat either. Most foods taste disgusting and I just want to throw up after I eat them. I have lost some weight because of that but I've found some foods that do taste good and I eat as much of them as I can. It may seem weird eating the same thing every day but if it's the only thing that I can keep down then that's what I have to do.

I know this doesn't help with advice on the seizures but it might help you with eating.
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