Hello, introducing myself.

Clovis

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Hello. My name is Clovis and I am a 51 year old female who has been dealing with seizures for almost 18 years.

I had a hysterectomy and the doctor missed tying off a bleeder. I bled internally for 36 hours and was unconscious from blood loss when they got me back into the OR. I had my first seizure 3 weeks later. It was an absence one and I wan't sure what was going on. A few days later I had the first gran mal. I have had almost every type of seizure there is and have never had complete control of them even with a VNS implant, I'm actually on my third having had them 15 years now, and have been on almost every medication there is.

The meds have either just not been effective or has had such horrible side effects I could not tolerate it. I am fighting with my medical coverage now to try to get Fycompa as a pretty much last ditch effort to try for control without the side effects.

Eight and a half weeks ago I had a gran mal so bad I shattered a vertebra in my back and had to have a new titanyum one rebuilt and put in. I also had to have a rib taken out so the surgeons could go in from the side since one of the pieces was up against my spinal cord.

Anyway, I am glad to be here and hope to share stories information and hopefully get help with some things I am dealing with and maybe help others too.
 

Nakamova

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Hey Clovis, welcome to CWE!

Yikes! It sounds like you've had a tough time, and the insurance company isn't making it any easier. You're in good company here at CWE, plenty of folks who have been through the ringer with seizures, meds, doctors, and/or insurance... Feel free to vent in the padded room if the moods strikes.

I hope you heal quickly from the shattered vertebra.

best,
Nakamova
 

Clovis

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Thank you for the reply and welcome. I am getting better. Still have days where I have quite a bit of pain but at least they are getting fewer. Main problem now is trying to stay occupied without over doing it. Thankfully I like to read and do all kinds of puzzles.

Believe me I may very well take advantages of the padded room. My hubby says I am getting a bit cranky. Lol
 

Porkette

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Hi Clovis,

Welcome to CWE! I've had absence and complex partial seizure for 48 yrs. now. I tried over 13 meds and nothing stopped my seizures so my Dr. did a DNA test on me and found out I was drug resistant and she told me to start using cbd oil (med marijuana) and take my word it lowered my seizures to the lowest in my life. Another thing I do is put coconut oil on my skin once a day this helps build up ketones in the body which will reduce or stop seizures for some people. I had a right temporal lobectomy over 20 yrs. ago and it helped reduce my seizures but after I went through my change my seizures lowered even more this can sometimes happen to people with temporal lobe epilepsy.
Last yr. I was trying to lose some weight so I started taking 2 Tablespoons of apple cider vinegar with mother in it and then I noticed my seizures
reduced even more. Come to find out the vinegar can sometimes help reduce seizures for some people I even saw a video on You Tube about it.
Try doing some of these things if you want to. I wish you the best of luck and May God Bless You!

Sue
 

Clovis

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Thank you for your welcome and reply. I am probably med resistant too from all I have experienced. I have been using CBD oil, no THC in it, for about about a year and a half now. When I first started on it I didn't have any type of seizure for almost 4 months. Then I started having the minor ones again snd have now had 2 gral mals this year.

We have looked into actual medical marijuana but the cost has prohibited us from being able to get some
 

Porkette

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Hi Clovis,

Check out healthyhempoil.com or Charlotte's Web I've been dealing with both of these companies and what I like about them is
if the med marijuana doesn't work you can return it within so many days and get your money back. I use 5 mg. a day of the mouth spray.
Wishing you only the best and May God Bless You!

Sue
 

Loopy Lou

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Ouch! You've been through the wringer. Welcome to the site, and i hope you heal up quickly
 

Clovis

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Thank you for the welcomes and kind words. I am getting better. Not as quickly as I'd hope, but then, I have no patience. LOL
 

Clovis

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Hi Clovis,

Check out healthyhempoil.com or Charlotte's Web I've been dealing with both of these companies and what I like about them is
if the med marijuana doesn't work you can return it within so many days and get your money back. I use 5 mg. a day of the mouth spray.
Wishing you only the best and May God Bless You!

Sue
I have been using a brand of CBD of a company called Regalabs. It has a high concentration of the CBD with less of other kinds of oil. I have tried the Charlotte's web and it didn't seem to have as much of the actual CBD oil and was about 3 times more expensive than what I currently use.

I didn't know about being able to get your money back from a company tho. That is good to know. The only thing I wonder about is how many days do you get to return it and doesn't it take several days for the oil to get into your system and start working?
 
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