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Epilepsy Action
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Caregiver, question help is appreciated!

Hi, my name is kelly and I am a caregiver of my 28 year old boyfriend who currently has stage 4 melanoma. I am apart of the caregiver group for that as well. My question for ANYONE is if I can be apart of this group and I ask because my boyfriend has NON epileptic seizures due to a brain tumor that was sitting in his left temporal lobe of his brain.. the tumor bled, and that’s how we knew it existed. Once it bled, he started having speech disturbances which I didn’t understand and had mistaken them for migraine symptoms that had been going on for 2 days prior.. long story short; he has suffered gran mal seizures ever since. (August 23rd, 2018) He’s had one about every 30 days or so. Give or take.. he’s had two partial seizures in the mix as well. All having auras that have presented themselves 3-4 minutes prior to seizing and as far as an hour before. He is currently on 2,000mg of Keppra and 200mg of Vimpat. EEG has shown slowing on the left side of his brain. We have been using CBD oil (charlottes web brand) for a little over 2 months.. his last gran mal convulsion seizure was on Christmas.. partial on January 11th consisting of loss of speech, (no convulsions). We are both terrified of these seizures and the neurologist is kind of like a robot.. and BOTH of us are looking for comfort from people who know what we are going through. There are no health forums for non epileptic seizures :(

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Hi Kelly my heart goes out to you and your boyfriend. A grand mal seizure is a *type* of epileptic seizure , there are many causes, in your boyfriends scenario it is the tumor that is causing his seizures. In my sons case no one knows what is causing them. The auras ect he gets are a type of warning, my son gets flashing lights, others get a smell or taste. They are terrifying, but it seems you are doing all the right things to help. I have been told the "oil" is the best medication. I wish I could be more supportive, all the best to you both x

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The neurologist is dancing around the question when I ask her if he is non epileptic or epileptic. I do know the medicine he’s on is for epilepsy. They are pretty strong anti convulsants. 4,000mg of Keppra a day. And 400mg of vimpat a day. That’s a lot.. and he takes 400mg of gabapentin 3 times a day. PLUS CBD oil. It’s wild.. we know what causing them, it was the tumor that they removed.. Do you have a hospital around you that does sleep studies? My aunt, and a friend actually JUST got out of a sleep study. They keep you for 5 or so days, take you off the medicines and try to make you have a seizure so they can map where they are coming from.

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Kelly, for my son the sleep study would not be suitable, for many reasons. It is good they have removed the tumor, maybe you could write a list of questions for the neurologist, ask her to answer them for you, I always asked them to answer simply.rather than medical terms. It might help..

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Hi Kelly

Of course, it’s ok for you to post on this platform. I hope you hear from others, as sharing information and experiences can be a good idea.

To find out more about Non-epileptic attack disorder (NEAD) here is a website nonepilepticattacks.info that has been set up by people with NEAD to provide information and support for those with NEAD and their family and friends.

As your boyfriends seizures started due to his brain tumour and he is on epilepsy medicine, are his doctors saying he has both epilepsy and non-epileptic seizures?

I ask as people often develop epilepsy when they have a brain tumour. Also doctors do not prescribe epilepsy medicine to treat NEAD.

If you would like to discuss this further please do come back to me with more information. You can post on here or email me helpline@epilepsy.org.uk or phone me on the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Thursday 8.30am until 8.00pm, Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

Epilepsy

Action Helpline Team

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That’s why I’m so confused, they haven’t told us. I asked if he had epilepsy but she danced around it. In all his paper work it says NES. So that’s all I have to go off of. And I’m also in the US, so I don’t know if I could call that number 😔

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Hi Kelly0d

I’m sorry but you will not be able to phone our helpline from America.

You could maybe try the Epilepsy Foundation in America for local support.

epilepsy.com/

Regards

Diane

Epilepsy Action Helpline Team

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