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Advice? Still having seizures and MRI is normal.
I need advice, My brother has been having seizures since we were a year old and our whole lives we have been told that it is just epilepsy he’s even been told that it is just anxiety. over the years he has had a bunch of different cocktails of medications, and neurologists he is currently seeing an epileptologist who has recommended that he goes to the mayo clinic because he has had seizures more frequent in the last few months and it has been impacting his quality of life and he is super frustrated and wants answers we went to the clinic and they did an MRI which came back completely normal and they want to do a PET scan in November has anyone found any other causes for seizures other than the brain or is there anything else we should be looking out for it would be appreciated
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@happyrivers9 would you be able to tell me more about the DBS? how have the two devices worked together?
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2 Reactions@maureendigi
The VNS and DBS work just fine together. We saw have observed no problems associated with 2 devices. The VNS works with the vagus nerve and the DBS works by sending controlled electrical stimulation to the brain.
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4 Reactions@happyrivers9
Thank you for sharing those additional details. I was wondering — has your son's doctor ever considered Epidiolex as part of his treatment?
Chris
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1 ReactionYes my son tried Epidiolex for over a year. Not very effective for him. Side effect was loose stools and diarrhea. Others may have different reactions and results.
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1 ReactionThank you for sharing this @happyrivers9! I'm sorry to hear that Epidiolex was not very effective for your son. As you wisely noted, responses can vary quite a bit from person to person — what doesn't work well for one may work better for another.
I hope his DBS continues to bring him better seizure control 🤞!
Chris
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1 ReactionYou may be experiencing both Anxiety attacks and Seizures. Many of the seizure medications, one of the side effects is anxiety. I just recently discovered this information attempting to control my seizures. The last two prescription drugs subscribed for me were Keppra, which I was taking for over 15 years and just recently Vimpat. I requested to be taken off the Keppra and they subscribed Vimpat. When I received the Vimpat, the first side effect listed is anxiety. Therefore, I didn't even open it. Also, 10mg. of Lexipro (5 mg. morn. 5 mg, eve) was prescribed for anxiety. It has been very successful in controlling anxiety for me. I take 2mg. of Clonazepam in the evening to help me sleep. Lamictal (100mg twice a day) for seizures. I take Kava Kava, a supplement in the afternoon. It also relieves anxiety issues. The anxiety issues are nearly gone. I take many other supplements, but won't discuss them here. Google Anxiety attacks verses Seizures. You'll find that many of the symptoms are the same.
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2 ReactionsJust to update he got the VNS put in two weeks ago and getting it turned on tomorrow but I was also wondering he’s on xcopri and lamotragine and has been having issues with high blood pressure has this happened to anyone else or does anyone know anything about it?