Quality of life with epilepsy

Rufus53

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Hi,
My niece has epilepsy. She is 31 years old. She had her first brain surgery, a radical resection of the left temporal lobe at the age of nine. Unfortunately, she had 2 more surgeries, months apart at the age of 13. She still has seizures. She has tried all the meds, she takes an extremely high dosage of phenobarbital in conjunction with other meds. The pheno has caused severe osteoporosis, her meds have caused her face to be covered in terrible acne. Aly has a vagus nerve stimulator which has helped with the seizures. Her doctor, Orin Davinsky, wants her to get an RNS in the hopes that her medication can be lowered.
Aly has many problems socially. I don’t know if her problems stem from her surgeries, her meds or both. The first surgery was done without a grid.
Aly displays all the symptoms of a narcissistic personality disorder. She has no real friends, she can’t hold a job of any kind, or maintain a relationship with a boyfriend. Upon meeting people, she is overly friendly, talks incessantly, she exaggerates her importance, makes up stories, among other things. She makes people uncomfortable. Every job or volunteer position she gets ends in disaster.
There doesn’t seem to be any help for Aly. She writes poetry and performs at open mic nights around the City. That is her only avenue for socializing, any people she befriends eventually abandon her. She recently had 2 meltdowns, she displayed symptoms of pyschosis. Her med levels were off and she snapped out of it but Dr. Davinsky is pushing the RNS. Her parents are afraid the invasive procedure could make her mental problems worse. Anyone else know of a similar situation? Aly sees a cognitive therapist and a psychologist but nothing seems to help. Thank You for reading this.
 

Porkette

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Hi Rufus53,

Welcome to the forum! I had 2 brain surgeries when I was in my 30's to help reduce my seizures, just like your niece I have been on over 10 different meds but nothing stopped the seizures. Until my Dr. told me to start using the medical marijuana (CBD oil) and I was amazed at how that reduced my seizures. She may want to try that before the RNS. Also another thing that has helped me as crazy as it sounds is 2 Tablespoons of apple cider vinegar with mother in the morning before I eat breakfast that will also clear up the acne. I was amazed at how the vinegar lowered my seizures to the lowest in the past 47 yrs.
In regards to Aly's personality a lot of that can be do to the meds she takes and also the surgery she had. My neurosurgeon told me that my personality could change after surgery. My best advice is before anymore surgery Aly should see a Epileptologist, neurophyschogist and neurosurgeon at an Epilepsy Center. All of these Drs. work together as a team and communicate with each other as to what would be the best treatment for a person, take my word a psychologist won't help much because they don't understand epilepsy like a neuropsychologist would. Also have her start taking vitamin B12 1000 mcg. once a day that will help calm the nerves. Wishing you and your niece only the best and May God Bless the Both of You!

Sue
 

Rufus53

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Hi Sue,
Thanks so much for your reply. Aly is a patient at NYU. She does have an Epileptologist and a neuropsychologist. They haven’t helped her improve her quality of life. Her seizures are mild auras that aren’t her big problem. I feel like her surgery ruined any chance of a somewhat normal life. She has the classic symptoms of Narcissistic Personality Disorder. I’m trying to find out if other people that have had surgery have this condition. She shows a complete lack of empathy (not sympathy) which prevents her from connecting with people.
She makes inappropriate comments and remarks, she talks over people and fabricates her accomplishments. Her personal hygiene suffers without outside intervention. It’s like she lives in a fantasy world. I came here curious to see if others have similar problems. She is really a sweet girl at heart and through no fault of her own alienates people. She can’t keep a jog, even a menial one because she can’t follow directions and has a hard time accepting constructive criticism. I know there is no easy fix, I just wondered if others suffer like Aly.
Thank You for your imput. I will mention the Apple cider vinegar. Thanks for your time! It’s greatly appreciated!
Rufus53
 

Cint

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Rufus53,

Sorry to hear your niece is having such a difficult time after her surgery. I had a left temporal lobectomy way back in 1990 and was only seizure free for 18 months. My seizures came back with vengeance. I started having not only Cps, but TCs after my surgery. It changed me forever. I went into a severe depression and was seeing a neuropsychiatrist. I think it depends on where the seizures originate in the person's brain that will determine how the person behaves. Epilepsy changes a person, also.
My dr. said I had "dysphoric disorder" because of the seizures/surgery. I couldn't hold down a job after surgery and was severely disappointed because I used to work in the airline industry and was married to a pilot. After trying about 10 meds, my epileptologist suggested I try the VNS. I had my first VNS surgery back in 1997. It has reduced the seizures significantly for me. Since 1997, I've had two battery replacements and so far so good. My dr. did once suggest the RNS, but I told him no one is cutting my head open again while I'm alive!
You may want to check out this website for more info on epilepsy and behavior/moods:
https://www.epilepsy.com/learn/challenges-epilepsy/moods-and-behavior/mood-and-behavior-101/mood-and-personality-changes
 
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Janus

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Hi Rufus53 and thank you Cindy for all this great info from great people. I am preparing to have a VNS. AND still not sure. I am scheduled to meet the surgeon on April fool's day. That's a funny twist. I can't really find info from people who use the VNS and side effects from the general population, world wide. And so nobody ever died? Just sayin. I'm scared
 

Nakamova

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Hi Rufus53 --

It's possible that the surgery, the seizures and/or the meds have had an impact on your niece's personality. Dr. Devinsky is the well-respected head of the epilepsy center at NYU and has been involved in trials of the RNS, so he should have a sense of whether or not it will help your niece. (You can read a bit about it here https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/responsive-neurostimulation-rns). Still, given all the other treatments she has tried, it might make sense to get a second opinion before embarking yet another path.

You might also ask about having your niece see a Cognitive Behavioral Therapist to help her identify and modify behaviors that may be socially problematic for her.
 

Rufus53

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Quality of Life

Thank you to everyone for your kind words. Aly does see a Cognitve therapist. Dr. Davinsky is pressing for RNS, he fears she may be slipping into psychosis. We are all worried as this would be her fourth brain surgery. I think the suggestion of a second opinion is a good one but she has been the NYU system since she was 6 years old and it’s like her second home. God Bless You All!
 

Army Vet

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Hi Rufus53 and thank you Cindy for all this great info from great people. I am preparing to have a VNS. AND still not sure. I am scheduled to meet the surgeon on April fool's day. That's a funny twist. I can't really find info from people who use the VNS and side effects from the general population, world wide. And so nobody ever died? Just sayin. I'm scared
Hi Janus,

Sorry you're having trouble finding info on VNS's. I had my operation (FINALLY, after fighting the VA for over 2 years) back in December 2015 and I'd say it has helped quite a bit. The surgery is same day (ie it's not like you spend a week in the hospital recovering). Once you wake up from the surgery, they check your vitals and make sure everything is okay for x-number of hours. Assuming everything is okay, which it should be (just checking their work), then you'll be out the same day you walked in. I also didn't have stitches. They used glue instead. Had to wear a shirt that I didn't care about if it got ruined (due to the glue), but no biggie. Then I think I peeled off the glue after 48 hours or so. It's not tender or anything. However, you can definitely tell it's there (ie you can feel it with your hand; not OMG you can see it from 10 miles!). I have my mom hug my other side because her glasses would always push right where the VNS is lol.

The biggest thing with a VNS, at least for me, is getting used to talking with it (not to scare you lol). But with me, it always feels like I need to clear my throat when it goes off. Also, if you're talking in mid-sentence, it will override your speech during that moment lol. So you'll be in the middle of a great conversation and the VNS will go off and then you'll have let it do it's thing and then continue on with your conversation (ie clear your throat). At least that's been my experience.

The doctor has "played" with both the frequency and voltage (ie how often and how "hard" does it go off?). After he had turned up the frequency as high as he wanted it to go, he continued to go up on the voltage. After awhile I just couldn't handle going up any longer. It would literally make me gag/cough (ie choke me). So we agreed that the VNS settings were as far as they were going to go.

However, it has really cut down the number of seizures I've had. I looked at as:

What's worse? Being interrupted by a seizure or being interrupted by a VNS for a couple of seconds?

My :twocents:
 

Rufus53

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Quality of Life

Hi Army Vet,

Yes, the VNS does change one’s voice slightly and it’s necessary to clear your throat occasionally but it really does help with seizures. It is worth it.
I’d like to thank you for your service to our country. It’s sad that VA hospitals are in such a sad state. Good luck to you!
 
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