new member w. question about CBD

[Hope4all]

Hello everyone! I am new to the forum and just wanted to introduce myself. My name is Gene, and the reason why I'm here is that my niece has suffered from partial seizures since 2009, and we were looking for answers to some questions. At the present time, we were considering surgery(temporal lobectomy), and after undergoing all of the pre-op testing( mri, pet,Wada etc), New York has approved the use of medical marijuana. Now we have decided to put the surgery on hold and instead try to treat her episodes with CBD. Wanted to ask if anyone can share any experiences they may have had treating their seizures with CBD? Thank you all in advance.

 

[Nakamova]

Hi Gene --

I moved your post to give you your own welcome thread. Welcome to CWE! I don't have experience with CBD myself, but many members are curious and some have tried it. Below are some CWE threads on the topic, and I hope folks will chime in soon.

http://www.coping-with-epilepsy.com/forums/f23/has-anybody-tried-medical-pot-cbd-epilepsy-21518/
http://www.coping-with-epilepsy.com/forums/f20/dropping-meds-now-only-use-cbd-hemp-paste-25666/
http://www.coping-with-epilepsy.com/forums/f23/more-medical-marijuana-access-research-22905/
http://www.coping-with-epilepsy.com/forums/f23/medical-marijuana-cbd-epilepsy-real-scam-22874/
http://www.coping-with-epilepsy.com/forums/f23/does-anyone-here-take-cbd-oil-supplement-25136/
http://www.coping-with-epilepsy.com/forums/f20/nocturnal-seizures-cannabis-24766/

 

[AlohaBird]

Welcome! I'm so pleased to hear you are willing to give MMJ/CBD a try before going for invasive surgery. That's great that your state has 'seen the light'.

I am currently in the process of ramping back my meds while maintaining full seizure control by supplementing with a few different forms of cannabis.

I highly recommend this stuff (and no I don't work for them) http://www.holdenshope.com

There are also all kinds of interesting "edibles" these days for those of us who prefer not to smoke. There are chocolate bars, mints, lemon aid, lollypops, etc.


I have tried some of the CBD extract products (capsules and tinctures) but they really didn't do much for me. They are often produced using high heat and sometimes harsh chemical solvents which might interfere with the good stuff being able to do you any good.

The Holden's Hope paste is the whole plant (a strain which is naturally high in CBD and very low in THC) which is gently cooked in coconut oil and then the whole plant is ground up into the oil to form a paste.

We are just at the early stages of research as to why and how cannabis does what it does but it seems that when we try to isolate a particular element, there is something lost. Researchers are calling this, "the entourage effect".

Cannabis is making all the difference in the world for me (totally off one out of two of my meds) and I hope it can help you too. Kudos on being willing to give it a try.

 

[Hope4all]

Hello Nakamova

Thank you for all the sites you recommended, they were all very helpful. Being that the topic of CBD is new to me, I'm researching and educating myself as much as possible before jumping in. Thank you again and all the best. Gene.

 

[Hope4all]

Mmj / cbd

Hello AlohaBird

Thank you for the reply. I just took a look at the Holdens Hope website and decided we will give it a try

At the present time, we are just waiting for my nieces epileptologist to become certified,being that New York just saw the light on 1/7/16. The hospital which the doctor is affiliated with (NYU Medical Center), just completed a year-long clinical study on CBD, with promising results.They used a product called Epidiolex, and we're hoping it is as good if not better than Charlotte's Web. We have our fingers crossed.

As for the MMJ working for you and allowing you to come off one med,that is great news. Hoping that everything continues to go well for you so that the next time you post, you will tell us that you are off your meds completely!

All the best and thank you for sharing. Gene

 

[AlohaBird]

You're welcome.

Just to clarify, you don't need a prescription for products that are pure CBD. They are legal in all 50 states. The Holden's Hope paste is low enough in TCH that it is legal without an Rx too.

My best wishes to your niece.

 

[Hope4all]

Holdens Hope

Thank you for clarifying.

Question: Are you presently using the paste?

We will definitely give it a try until the doctor becomes certified and hopefully prescribes something that works.

We're open to all ideas and suggestions in hopes that we don't have to go ahead with the surgery.

Thanks again.

 

[AlohaBird]

Yes I am. I've been using it since last September during which time I have stepped back from 1000 mg /day of Depakote to ZERO.

Next to work on is the Phenobarbitol. Letting the old bod get used to this first and get all the leftovers cleaned out.

I'm sleeping really well and soundly (my seizures are nocturnal) and that feels like a gift from the gods.

Also since I'm off the Depakote completely (since Jan 1), I've lost 7 pounds without even trying.:woot: Depakote has the side effect of messing with metabolic functions.

The folks that run the Holden's Hope company are so nice and helpful too. If you have any customer service questions or concerns you can call or email and they get right back to you.

 

[Hope4all]

I was on the phone today with reps from both Holden's Hope and Realm of Caring (the producers of Charlottes Web). They were both very helpful. Their CBD products and pricing are somewhat similar.

I'm starting to understand that using CBD is somewhat trial and error, just like trying to get the correct combination of meds. I now understand the CBD is available with different potencies (from 200- 5,000 mg CBD). The rep at ROC recommended the 5,000 mg. and the dosing info is on their website. You have to start somewhere and experiment with dosages.

It's really nice to hear that so many things are working for you right now. I guess that's why we're all here so things can hopefully start working for Us (everyone here).

I had a few more questions:

How many mg of CBD did you start with?

Where did you get the dosage info from?

Did you consult with your doctor about the CBD beforehand, and if so,
did he/she make any suggestions about dosages?

Thanks again

 

[Carpentergirl]

Just wanted to give you a shout out and welcome you to the forum Hope4All! Always the more the merrier!

 

[AlohaBird]

The Charlotte's Web product is an extracted tincture whereas the Holden's Hope paste is the whole plant. In my experience that makes all the difference in the world.

I tried tinctures, sublingual sprays, and capsules of CBD. The standard capsule is 25mg and I was taking four of those a night. The dosing on the other liquid products is imprecise at best. There does not seem to be any definitive dosing information available that is anything more than, "Try this amount and if that doesn't work try a little more."

At the time I started with the CBD products I was "between neurologists" (One had retired, then I moved). So, I was experimenting on my own. My new neurologist basically says, "Can't hurt, might help, have fun."

With the Holden's Hope paste, I can tell if I have taken a bit too much because I end up sleeping until noon. So, I dialed it back and found my ideal dose. The thing about the oversleeping is that, to me, it shows very convincingly that the HH paste is doing something. I mean it is difficult to be under the influence of a placebo effect when you are asleep.

After trying all those various extracted CBD products and then the Holden's Hope paste, I really think the HH folks are onto something with their process of gentle, low heat cooking and including the whole plant. There are multiple components of a cannabis plant including the CBD, THC, CBN, terpines, etc. We don't really know enough about how they all work synergistically. When high heat and chemical solvents are used to extract only one component, something important gets lost in the process.

I tried several brands of extracts and, after a lot of time and money, came to the conclusion that they really didn't do much of anything.

 

[Nakamova]

Side note: CBD products may be legal in all 50 states, but one guy who was selling them here in Massachusetts was charged by the police because there were trace amounts of THC in some of the items. It seems clear (to me) that the charges are without merit, and that the police are trying to make an example of the guy (they even confiscated legal hemp items), but folks should be aware that it may still a little murky legally in some states.

You can read about it here:
https://www.bostonglobe.com/metro/2...na-activist/kFGpQ7O31ArPkZsjfhwqPN/story.html

 

[Hope4all]

Hello again AlohaBird

I see that your pretty well versed on this CBD topic after trying all those various CBD products. I understand that during the extraction process, some of the other compounds which may help with seizures may be also extracted, as opposed to the HH paste which uses the entire plant.After consulting with my family,we decided we will try the paste.

I see that the paste is available with 2500, 1500 and 500 mg of CBD. How many mg of CBD is the paste that you are presently using?

Thanks again.

 

[Hope4all]

Hi Carpentergirl

Thank you for the "welcome to the forum". Your absolutely right. The more members we have the more info available to all.

At the present time, I'm just looking for answers, but hopefully I'll be able to educate myself to the point where I'll be able to provide useful input.

All the best

 

[Cint]

Hi Gene,

You stated your niece suffers from CP seizures, so I suggest you not experiment on your own with the meds nor with the CBD, as AlohaBird said she did. That could be disastrous, especially for a child or adolescent. I do understand why you don't want to go the surgery route. I was down that road and it didn't work for me. But it does work for the majority of folks. And since there is still so much discrepancy out there about CBD, another reason to work with your neurologist. Make sure he/she is an epileptologist who is well-educated on the subject. Since my surgery was not successful, I haven't looked in to the cannabis route. Not too sure about it myself.

Anyway, here is another website on the subject:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-

Cannabidiol (CBD): Recently, there have been some open-labeled studies in the U.S. of Epidiolex (a drug derived from cannabidiol or CBD), which is produced by a pharmaceutical company (GW Pharmaceuticals). Epidiolex is a purified, 99% oil-based extract of CBD that is produced to give known and consistent amounts in each dose. The U.S. Food and Drug Administration (FDA) has given some epilepsy centers permission to use this drug as "compassionate use" for a limited number of people at each center. Such studies are ongoing for difficult epilepsies such as Lennox-Gastaut syndrome (in children and adults) and Dravet syndrome in children.
Results from 213 people who received Epidiolex (99% CBD) in an open label study (without a placebo control) were presented at the American Academy of Neurology, April 22, 2015 in Washington DC. Data from 137 people who completed 12 weeks or more on the drug were used to look at how helpful or effective the drug was. People who received the Epidiolex ranged from 2 to 26 years old with an average age of 11. All had epilepsy that did not respond to currently available treatments - 25 or 18% had Dravet Syndrome (DS) and 22 or 16% had Lennox-Gastaut Syndrome (LGS).

 

[AlohaBird]

Hello again AlohaBird

I see that your pretty well versed on this CBD topic after trying all those various CBD products. I understand that during the extraction process, some of the other compounds which may help with seizures may be also extracted, as opposed to the HH paste which uses the entire plant.After consulting with my family,we decided we will try the paste.

I see that the paste is available with 2500, 1500 and 500 mg of CBD. How many mg of CBD is the paste that you are presently using?

Thanks again.

Great! I hope it works as well for you as it is for me.

The 500, 1500, and 2500 mg designations on the jars available on their website is not about potency, it's about what size jar you want. It is all the same strength. It gets a little less expensive (per mg) if you order more of course.

Keep us posted on how it works for you.

 

[AlohaBird]

Side note: CBD products may be legal in all 50 states, but one guy who was selling them here in Massachusetts was charged by the police because there were trace amounts of THC in some of the items. It seems clear (to me) that the charges are without merit, and that the police are trying to make an example of the guy (they even confiscated legal hemp items), but folks should be aware that it may still a little murky legally in some states.

You can read about it here:
https://www.bostonglobe.com/metro/2...na-activist/kFGpQ7O31ArPkZsjfhwqPN/story.html

From that article:

Swomley said that authorities sought to intimidate Downing by using a SWAT team armed with semiautomatic weapons to gain access to his home, while his wife and children were there.

“That’s just way too overboard for who Bill Downing is,” Swomley said. “They are trying to silence him.”


This guy is a vocal advocate for the legalization of marijuana in his state and this is blatant harassment by the authorities in order to shut him up. I have every confidence that the constitution will prevail here.

The issue is not at all "murky" legally. He was selling products that are legal in all 50 states and under federal law as well.

 

[AlohaBird]

Hi Gene,

You stated your niece suffers from CP seizures, so I suggest you not experiment on your own with the meds nor with the CBD, as AlohaBird said she did. That could be disastrous, especially for a child or adolescent. I do understand why you don't want to go the surgery route. I was down that road and it didn't work for me. But it does work for the majority of folks. And since there is still so much discrepancy out there about CBD, another reason to work with your neurologist. Make sure he/she is an epileptologist who is well-educated on the subject. Since my surgery was not successful, I haven't looked in to the cannabis route. Not too sure about it myself.

I agree that having a trusted partner in a neurologist while making any changes in medications or other treatment plans is the optimal route. Sometimes one goes it on one's own however due to other factors such as the neurologist being unavailable (FedUp got put on a two year wait list) or the neurologist being ignorant of anything other than pills and surgery as options. An epileptologist is definitely optimal too but not always available depending on where one lives.

As far as potential "disasters", I agree if you are talking about ditching the meds abruptly. However the worst disaster that could occur with a CBD product is being a little sleepy in the morning. Or there could be the disaster of getting talked into surgery without exploring other options first.

Personally I would be more leery of a concentrated synthetic product such as that Epidolex than a whole plant product too since cannabis has been used by humans as a medicinal herb since before Hippocrates. In its natural form, we know it is not toxic.

How old is your niece, Gene?

 

[Hope4all]

Thanks for the post Cint.

Just want to fill you in. Yes we are working with an epileptologist who is affiliated with NYU Medical Center in New York. NYU just completed a year-long clinical study using Epidiolex with promising results. At the present time, our epileptologist is in the process of becoming "certified" so that he may give prescriptions to be filled at the dispensaries. NewYork just approved the use of medical marijuana on 1/7/16, so the topic is fairly new to everyone here.

Clint, I appreciate your concern, but in all honesty, I feel that when the epileptologist prescribes something to my niece, it will be something that will be very similar to what we have available right now(Charlottes Web, Holden's Hope). So I guess what we're just trying to do is get a head start on things because we will need time to see any results.

We've waited so long already, I guess another week or two till the doctor becomes certified, shouldn't be a problem. We saw the epileptologist on 1/5/16 and he told us he should be certified within a couple of weeks. So hopefully he already is. I will make a phone call tomorrow. Hoping for the best.

Thank you again Cint, and all the best. Gene

 

[Hope4all]

Hi Nakamova

The law stipulates that hemp must be under .3% THC. If the products he possessed or was selling fall under this guideline, then the case against him should be thrown out.