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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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@jakedduck1
When the VNS comes out the whole thing comes out wire and all! I want no remnants left in. What good would it do to take it out without removing the wire?
You asked if it ever did any good. My mother never saw any improvement with it. Only that phony VNS phanatic neurologist thought it did some good. I saw her for 15 years and had it in all that time and there was no improvement in my seizures. Yet she insisted on the replacement of the battery! My mother even couldn't understand that.
Take care,
Laurie
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2 ReactionsHi Everybody,
As I have mentioned in many posts, I see more and more alternatives besides surgery for those who have refractory epilepsy, like I have.
On the 31st of August there will be a webinar "Transcranial Direct Current Stimulation in Refractory Epilepsy".
For those interested, here is the link with more information: https://www.neuroelectrics.com/resources/webinar?utm_medium=email&_hsmi=269351571&_hsenc=p2ANqtz--wDKSp9-m_pYG0gmJ2jEFP9xnAa6avJR_LRT314DZVupExkD4VLX7CXQqrsCpwOs3v_d-ES7ABB6-tGtHaU5Wl8U8nVA&utm_content=268154707&utm_source=hs_email
Wishing you all a good day!
Chris (Santosha)
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2 ReactionsHello Chris,
Thank you for the information. It is certainly interesting and will be informative.
The alternatives of suirgery for persons with refractory epilepsy is most certainly needed.
Have a good day!
Take care,
Laurie
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4 ReactionsHi Laurie
Thank you for your comment. I hope this webinar brings new perspectives to those with refractory epilepsy and a smile.
Take care you too.
Have all a nice weekend!
Chris (Santosha)
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1 ReactionThere was a webinar on Mayo Clinic some time back, not sure when but people asked questions. It was very good but I don't know how to repost it. Maybe the moderator could post it and how to access others.
Memories being what they are in many Epilepsy patients I believe they would be helpful and appreciated.
Thank you in advance.
Jake
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2 ReactionsHi Jake,
Thank you for sharing this precious information. It would be great if we could have access to this webinar from Mayo Clinic.
Chris (Santosha)
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