← Return to My neurologist called me her "complicated patient"...

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@lisalucier

Hi, @crstyday40 and @jakedduck1 – I thought I'd also bring into this conversation @ckeys @davidinvegas @mmas @michele0161 @dawn_giacabazi @aroman @mythreeguys, who may have some input on dealing with complex partial and absence seizures, as well as the migraines. I'm guessing some of these members can relate to what you've shared about feeling alone in what you are facing medically, having your doctor call you her "complicated patient" and feeling like you are trying not to lose hope. Trusting they will have some tips and advice from their own experiences.

You mentioned you don't feel your doctor knows what else to do with you. Are you considering another opinion from a different M.D.? Do you have a friend or relative who is walking through this with you, @crstyday40?

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Replies to "Hi, @crstyday40 and @jakedduck1 - I thought I'd also bring into this conversation @ckeys @davidinvegas @mmas..."

@crstyday40
Have you considered going to see an Epileptologist? I hope you give that some serious thought. Do you know if there is a level 4 Epilepsy Center near you. Here is the National Association of Epilepsy Centers to help you locate one if your interested https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/all-epilepsy-center-locations/

I’m probably out of line here but
You state your husband is against VNS, I’m not a big fan of it either. I know the creator of the VNS Message Board and respect her greatly for her pursuit of the truth. She uncovered things the manufacturer was hiding. Regardless, I’ve known of many people that it has helped and vice versa. I don’t claim to be knowledgeable about the RNS. I’m not thrilled with the success rate in the beginning, their 7 year numbers are equivalent to the success rate of AEDs.
I believe healthcare decisions should be a matter of personal choice. Your husband is not the one directly going through the agonizing effects of the seizures and I don’t think anyone can except the one who experiences them. It’s no walk in the park for him either. I guess your husband is just trying to protect you. I know how awful these seizures can be and the devastation they can cause. How I wish I didn’t. If I were you I’d go to another Neuro for their opinion. I’ve been to so many I’ve lost count. I hope someone is able to get your seizures under control or at least slowed down.
Best of luck,
Jake