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drug resistant seizures
I had my first seizure at age ten; I am 67 now. I was started out on phenobarbital, but it did no good. During my teens and early twenties, my seizures were catamenial. I had no seizures during either of my two pregnancies. I know that my seizures are triggered by fluctuations in my hormones. Estrogen is the obvious one since the seizures were catamenial. However, insulin plays a role, as well. I would have seizures while on the treadmill and learned it was because a drop in my blood sugar. About a year ago, my husband was diagnosed with cancer and underwen emergency surgery. I was so stressed that I couldn't sleep, so I started to take melatonin every night. I didn't even know that was a hormone; but I went three months without a seizure. Flashing or flickering lights are the first trigger I noticed. I noticed this when my mother would drive me to church, and the setting sun flashing through the trees would cause a seizure. I had one brilliant neurologist tell me that the seizure was caused because I didn't want to go to church. So many things that are said to trigger seizures, such as stress, artificial sweeteners, and others, do not affect me. I have taken part in clinical trials under the care of Dr. J. Kiffin Penry. I have had a VNS, but it did no good; and I am not a candidate for the RNS because of all the scar tissue in my brain. I have also had a temporal lobe resection. I went one year with no seizures, but they came back with the same prodromal symptoms as before. That means I had all the symptoms of pms.
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@psychogranny, Good Morning
I am sorry to hear your story. I am also very sensitive to those medications that did no good to me, being treated with CBD from medical cannabis since 2021 and doing well again. Have you tried that?
My period is also a trigger to my seizures. So, my epileptologist together with my gynecologist have put me on a birth control pill with no breaks so as not to have my periods. This has been very helpful. IUD Mirena has unfortunately not worked for me, but it might work for you?
I do understand you have temporal lobe epilepsy, like me, correct? As I do not tolerate well AEDs, my epileptologist has been investing in alternatives to control my seizures. I have been more than 1 year with a gluten-free diet and this has reduced my seizures by 60%. Very recently, I have been diagnosed with SIBO (small intestinal bacterial overgrowth) that might have been caused by past medications. More and more there are studies showing a close relationship between the gut and the brain. Perhaps, it is interesting to investigate that also in your case.
My best wishes to you!!!
Santosha
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4 Reactions@psychogranny I'm so happy you are not under the care of the genius that thought church brought your seizures on! There is a place for him where he doesn't see patients; I hope~!!😕😕
I had to Google catamenial even though I've been dealing with epilepsy since 1955 when they thought phenobarbital was a cure-all. I'm so sorry you can't seem to get more control than you are experiencing. Reading your post ...you certainly have tried everything, it seems.
I found it amazing that Melatonin helped, but your explanation clarified why. I have so much faith in the Mayo Clinic or centers in cities like Chicago, Boston, or Dallas. Do you think pursuing one of those avenues would help?
I'm 82 for a few more months, and having to take steroids for GCA meant watered-down seizure meds, but I was put on Keppra at age 79, and it has worked. I have temporal lobe also.
As I'm sure you do, I wish there would be some combo of hormones and meds that would work.💞
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3 ReactionsPortsmouth Naval Hospital, Wake Forest University, University of Miami, UVA, Charlottesville, Harvard, and innumerable civilian docs.
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4 Reactions@psychogranny You are amazing! I think you would qualify to be a Viking!! I'm thankful that you have had all the incredible opportunities you have...but I know.💞
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3 ReactionsI have my husband to thank for all of this. My mother took me to our family doctor and to a specialist once after I was diagnosed. When we moved to Norfolk after our marriage, the first thing he did was have me examined. During that diagnosis, I learned that the dosage of dilantin that I had been on since childhood was a child's pill. The dosage was changed, but it did no good.
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3 Reactions@psychogranny As I said before...you have been to some excellent facilities, but....how do you feel about your neurologist now? I'm a Granny and will be 83 shortly...I remember Dilantin in the 1950s; I was treated by a wonderful epileptologist at Children's Hospital in Boston, Dr. Lombroso. It still took a while to get the meds balanced with my system. There are so many improvements in the anticonvulsants available today. But, if you feel your neurologist or epileptologist is doing all he can.....if not, I would go to the Mayo Clinic.💞
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2 ReactionsI constantly research anything I can find about epilepsy. One thing you can say about my mother is she didn't raise a quitter, at least not when it comes to me. I have learned from studying the ketogenic diet that medium chain triglycerides are what makes it work. With that in mind, I started taking caprylic acid on June 24. I started at 600 mg daily and titrated it weekly. When Monday comes along, I will have made my first month seizure free. If you go to the nih.gov website and search "refractory epilepsy" and "caprylic acid" you will find some interesting articles explaining why I started with this.
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3 ReactionsHello @psychogranny
I too have had drug-resistant seizures despite a temporal lobectomy and a VNS. The addition of the drug Zonisamide has made me seizure free for two years. It has been a miracle drug for me. I research all medications before I take them. I learned that Zonisamide is a sulfa drug.
Because the VNS does not control your seizures do you have the battery replaced regularly? My battery is dead. I had a doctor who offered to remove my VNS. Because I hate it so much that I could rip it out I will take him up on that!
Laurie @lsittll
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2 Reactions@lsittll
Good to hear your VNS is coming out. Are they removing the wire around your vagus nerve too?
You sure had a lot of grief dealing with it. Did that thing ever work to help your seizures?
Take care,
Jake
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2 Reactions@psychogranny
I had That's sure easier than all the trouble dealing with the Ketogenic diet.
I had drug-resistant seizures for 45 years. Wish I knew about it 56 years ago.
Thank you for posting this information.
Take care,
Jake
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