FDA approved CBD Oil - Epidiolex

[Afriend]

To start let me say that unlike most OTC CBD oil this in NOT a full spectrum oil.
I'm the man who has a friend of 51 yrs who suffers from seizures. Usually she takes only Tegretol but at this point we don't know if it helps her or not anymore. Her docs have wanted her to take all kinds of new meds but she's scared. The few she did try made her so exhausted she coulddn't function at all. When we were younger we both smoked Pot from time to time and Donna said she never had a seizure while stoned. This is why I have wanted her to try CBD for almost a year. I bought her a bottle of the otc CBD but she never tried it.
Recently she got a new neurologist who wrote her a script for FDA CBD Oil called Epidiolex. Luckily her insurance covered it. Btw, I take otc CBD to help sleep.

This Epidiolex oil is quite different from otc CBD. For one thing 50 mg of Epidiolex is the same as 150 mg of otc CBD. Donna only started the Epidiolex 30 days ago and she's still at the 50 mg dose. She's supposed to go up to 150 mg, that would mean 50 mg 3 times a day. So far there has been no change in the frequency of her seizures or auras.

I know several members here use CBD but does anyone take a prescription form of it? I have had no side effects from otc CBD but Donna thinks she's having side effects. She's not sure.
First of all it's making her laugh a lot, very much like Pot does when you first smoke it. But this isn't a problem.

Donna is also complaining about pain in her neck, on the left side, that sometimes goes down her back. I don't think the pain is severe but it was bad enough for her to mention it. And Donna doesn't complain much.
She won't be seeing her neurologist until early March. I told Donna to call her but she doesn't want to.

Does anyone have any advice with this Epidiolex?

 

[Porkette]

Hi Afriend,

I've been using CBD oil for at least 3 yrs. if not longer and it has reduced my seizures a lot. My Dr. told me never to use the pill form Epidiolex because it was man made and has more chemicals in it than the natural cbd oil. I do know that Epidiolex can cause insomnia and it can other bad side effects compared to the natural cbd oil that I use. If you are interested check out healthyhempoil.com and have Donna try the mouth spray or inhaler of the cbd what I like about this group I buy it from is if you don't like it you can get your money back within 90 days. Another place you may want to check out is Charolette's Web they are really good also. I wish you and Donna the best of luck and May God Bless the Both of You!

Sue

 

[Afriend]

Hi Sue, Thanks for the quick reply. I did some reading up on Epidiolex and I also got the impression there are pharmaceutical chemicals in it that probably aren't in the otc CBD oils. That's what your doc said, right. I also got the feeling Epidiolex is probably extremely expensive since insurance is paying for it. So they have to make it seem like it's something you can't get otc and much cheaper. However, Epidiolex is not a pill. It's liquid and it comes with a syringe only without a needle. I'm going to have a hard time convincing Donna she's better off with otc CBD. Usually Donna never trusts doctors but this time she is. And she doesn't use the Internet so I can't show her this board.
I would love it if she would take the Charolette's Web oil, but I checked on the price 8 yrs ago and it was $250 a bottle. Maybe now it's cheaper. Where I live there are only 2 otc brands of CBD I can get. This is because I don't have a car. I take Ananda and it says it's a full spectrum oil (minus the THC, of course). I also tried Veritas Farms oil but it didn't help me sleep.
I know Donna a long time. Unless those pains in her shoulders get worse she's probably going to keep taking the Epidiolex until she goes back to the doc.

Sue, can I ask you 2 questions. What dose are you taking? And do you remember approximately how long you took the CBD until you noticed a reduction in seizures?

John

 

[Porkette]

Hi John,

I want to apologize I didn't realize that Epidiolex was in a liquid form when I first heard about it they had it in the pill form.

My Dr. did a DNA test on me and found out I was drug resistant to all seizure meds out on the market and that's when I was
told to start using cbd oil. I use about 5 mg. a day in a mouth spray form. I pay $45.00 for 1 ounce that last me 2-3 months.
I order it through Healthy Hemp oil and they in turn mail it to me.

I squirt the spray in my mouth 2 times in the morning and then 2 times around 4 pm and it has reduced my seizures to the
lowest in my life. I started using the cbd oil about 4 yrs. ago if not longer. The seizures reduced immediately after I started using the cbd.

Other things I do to help reduce the seizures is put coconut oil on my legs and feet once a day in the morning the coconut
oil builds up ketones in my body which help reduce the seizures and another thing I started to do last yr. was take 2 TABLE-
SPOONS of apple cider vinegar with mother in it and now my seizures are the lowest in my life. I take the vinegar in the
morning and then eat breakfast. I started using the vinegar to lose weight but I later found out that it can help reduce seizures
You just have to be sure that you buy the organic apple cider vinegar with mother in it. Mother is a form of protein and good
bacteria from what I have been told. On YouTube there's girl who spoke about how all her seizures stopped when she started
using vinegar.

I wish you and your friend only the best of luck and May God Bless the Both of You,

Sue

 

[Afriend]

Hi Sue,
I'll tell Donna about the vinegar but she may not do it. Donna's been getting seizures since she was 14 which means 52 yrs. At this point she's skeptical and I can't blame her. I just wish she would get some kind of Internet connection so she could watch these things herself. But...

I'm confused about how they measure the dose of CBD in the various products. My bottle of oil says it's 600 mg extract. It's a fluid ounce bottle. But last night I was reading the fine print and it says 1 ml = 20mg of CBD. 1 ml is 1 eye dropper, or for Donna, it's 1 syringe. Currently Donna takes 1/2 a syringe, or 1/2 ml, but how many mg is that, I'm not sure. I went to the Epidiolex website and I thought it said 1 ml = 100 mg of CBD. That would mean that stuff is super concentrated. Are you sure you're taking 5 mg, maybe you're taking 50 mg? It's so confusing.
You're paying the going rate for a 1oz bottle of CBD, so that's good.
It's wonderful you saw a reduction in seizures so quickly. If Donna sticks with this maybe we'll look into getting the brand you use.

Thanks again,

John

 

[Porkette]

Hi John,

When I ordered the cbd oil it stated that I would get 100 mg. of cbd but then I read the fine print on the bottle and for every time
I spray the cbd into my mouth I get 2.5 mg and I squirt the spray into my mouth 2 times in the morning and 2 times in the afternoon.
You have to watch some of these companies they like to play tricks on people.
I've had seizures for 47 yrs. now along with the surgery to help reduce them. Tell Donna to go onto YOU TUBE and type in
vinegar and epilepsy there's a video with a girl by the name of Vanessa who speaks about how the vinegar reduced a large
amount of her seizures. The video is a little over 6 min. long. I wish you and Donna the best of luck and May God Bless The
Both of You!

Sue

 

[Afriend]

Hi Sue, Since I know Donna 50 yrs it's obvious that I love her. But at this point in our lives we're just friends. Donna is stubborn beyond belief. Her brother refers to her as eccentric. Whatever one considers her she hates the Internet. She doesn't own any kind of PC nor will she buy a smartphone. And currently I we live too far away for me to go there with my phone. Her daughter and ex husband have smartphones but neither is willing to argue with Donna until she would agree to watch a You Tube video. So most likely, that's not going to happen. This is why I make all these posts, she does listen to what I say but that doesn't mean she does it. But she hears me out.
She's been taking the liquid Epidiolex almost 2 months but she's still scared of side effects. Epidiolex is not exactly the same thing as otc CBD oil so I can't tell her with 100% truthfulness that her Epidiolex is just liquid Pot and since Pot never gave her side effects neither will Epidiolex. I don't think it will but it might. I wish she'd quit the Epidiolex and use otc CBD oil because that's what all of you are using plus I take it to help sleep. I smoked Pot every night for 35 yrs but I finally quit in 2002. My fear was I wouldn't sleep well without it and that happened. When NYS made CBD legal I decided to see if it would help me sleep and it does.
But now we have the dose issue. Donna is taking 0.75 ml of Epidiolex which is only half of what her neurologist wants her to take. Here's the confusing issue. The CBD I buy claims that each ml (that's 1 eye dropper) has either 250, 500, or 1000 mg of active CBD in it. To be honest I really don't see much difference between any of those bottles except for the price. But Donna's Epidiolex claims to have only 100 mg of CBD in 1 ml. With otc CBD they can say whatever they please but Epidiolex is supposed to be FDA regulated.
Now you said that basically you're taking only 10 mg of CBD a day. No offense, but are you sure you meant to type 2.5 or did you mean 25 mg? I'm guessing 1 spray is either 1 ml or 1/2 ml? I'm glad you're seeing a reduction in seizures. It must be like a dream come true.
As of the 2 months Donna's seizures and auras haven't reduced one bit. In fact last moth she had more seizures, but that was probably due to her stress levels. We've known stress causes seizures for Donna since the mid 1980's. Not enough sleep is another trigger and for Donna high stress also causes poor sleep. I think Donna should quit the Epidiolex, give her body a week to clear it out, and then start otc CBD oil. If I still owned a car I'd drive to where she lives once a week, and I'd nag her until she tries otc CBD. I'd also make her read these posts.

God Bless,
John

 

[Porkette]

Hi John,

I'm sorry to hear that Donna is being stubborn when it comes to the cbd. Maybe when she sees her neuro her neuro can tell her she
has to start using it, that's how I started using it. I also wanted to let you know I do use 2.5 mg. in the morning and afternoon for a total of
5 mg. a day of the cbd. Does Donna like candy? If she does you can get the gummie flavored cbd on Charolette's web just ask her is she
wants a piece of candy. I tried it the other day and it worked great plus as you mentioned it does make you sleepy.
I wish you and Donna only the best and May God Bless the Both of You,

Sue