Complex partial, Anxiety, and Peripheral Neuropathy

[pile4ever87]

My girlfriend has complex partial epilepsy of the temporal lobe region which I think is of a more comprehensive nature because it's a triple threat involving seizures, anxiety, and some peripheral neuropathy. She's been having these issues since she was a teen and she's 27 right now. She's been on over a half dozen anticonvulsants and twice for some such as Lamictal, Phenobarbital, and Lyrica. She received a Vagus Nerve Stimulator (VNS) implant via surgery. And since everything has proved virtually unsuccessful up until now, the way we see it we currently have 4 hands left to play so to speak. Charlotte's Web pending federal approval; Epidiolex; Sativex; and Responsive Neurostimulation (RNS) surgery if ABSOLUTELY necessary as a last resort!

 

[Cint]

Welcome to CWE,

Your girlfriend's story sounds very similar to mine, except my seizures started when I was 22 years old (and that was 30+ years ago for me). And not only do I suffer from CP, but until I had my VNS, I was having TC seizures, also. I had a Temporal Lobectomy that led me to having the VNS put in because the seizures were worse after the brain surgery. Now that I have tried 12 or so drugs, my epileptologist has mentioned the Responsive Neurostimulator to me, too.
I hate the thought of having two implants in my body--- a super powered woman!
I feel I've been experimented on enough.

But your girlfriend is much younger than me, so she will be the one making the choice. Wishing her the best.

 

[pile4ever87]

temporal lobe epilepsy; tonic-clonic seizures

Thank you for your expression of endearment Clint, my name is Peter and I have indeed been there and done almost all of that for we've been dating since 2006 and living together since 2011 and God forbid if I myself have broken anything neurologically because that basically signifies how stressed out and frustrated we both are because being a pseudo-caregiver is never easy but that's true love for ya I guess... Alexandra is a willful woman who wants to fulfill a meaningful life with me and has just as much a sturdy constitution as I do despite our differences in physique and appearance which would be considered as similar as David and Goliath. And since you mentioned it, I believe she specifically suffers from tonic clonic seizures because they're defined by 60 to 90 second blackouts which are accompanied by involuntary jerking, lip smacking, and ALWAYS turns right when she's going in circles or attempting to do so and NEVER to the left. Finally this is followed by an additional 60 to 90 seconds of disorientation before fully coming to with the knowledge of having been out but bitter most of the time when she concedes if anyone asks out of ignorance or concern... Most of the time they are aurae which are still enough to throw her off course almost as much as blackouts themselves but it all varies. Hopefully if Congress and Obama approve the Charlotte's Web bill, the 18 to 20% CBD content should prove powerful enough to suppress everything that's present and absent

 

[Cint]

Cint is my screen name. Anyway, what you have described sounds more like complex partial seizures and not tonic-clonic seizures. A tonic-clonic is when someone blacks out and starts convulsing for a minute or two, eyes are rolled back in their heads and most of the times they will momentarily turn blue. And then it will take a while for them to recover. A complex partial seizure is where a person does start lip smacking and makes jerking movements. They don't answer when someone speaks to them and have a spaced out look in their eyes. It usually lasts for a minute or so.

For more info:
http://www.epilepsy.com/learn/types-seizures/complex-partial-seizures

The Charlotte's Webb bill is for children and individuals with severe epilepsy, from my understanding. I'm not sure it will work for everyone. I don't think it will work for me.

 

[pile4ever87]

Yes Clint, I thought about that shortly after replying last night my mistake they are complex partial and not tonic clonic. And as far as the Charlotte's Web bill--for children who are afflicted with forms of epilepsy that are exponentially worse than hers, I would say that hers and possibly even yours as well would be considered as less than trivial by to be dealt with properly by comparison. But, you are right about it not being right for everyone; because, even though a majority of testimonies and spreadsheets may conclude that Charlotte's Web is the closest thing to an epileptic panacea, everyone person is unique. Evidence suggests that there must be as much CBD content as possible but with the least amount of THC followed by it as possible and Charlotte's Web is something of a 18:1 or 20:1 ratio. We both want a quality of life that we and everyone deserves as long as no ill-intent is involved and until she's able to scout herself independently we have those 4 aforementioned poker hands left to play as far as a cure.