Question for anyone using marijuana for treatment

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bdhshakes

bdhshakes

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I wanted to see if you guys could provide any suggestions from your own experiences or just what you've heard.

I think we've all seen/heard about the Marijuana & Epilepsy stuff that's been around. I've tried almost every medication under the sun and got a VNS put in a year and a half ago. VNS changed so much for me but I'm not quite seizure free. I happened to be visiting Denver this last week for a Star Wars art show and so I thought 'hey... I may as well check out the marijuana stores while I'm here'. I was very surprised how professional the one place I went to was. I walked in and straight away asked about what they have for epilepsy and they showed me CBD oil. I decided to just buy it and would figure the rest out later as I wouldn't be in Denver very long.

So i've got the stuff sitting at home and I haven't attempted it yet. Sent an email to my neuro to ask him about it as we haven't even talked about it in depth in the past. I'm in a transition of pills right now so I won't be trying it until I'm done with that. Switching off Vimpat onto Fycompa.


TL;DR --- Is anyone here on CBD oil for treatment? What is your dosage? How do you take it? With food or just pop the stuff in your mouth? Does it seem to help? Notice any side effects?


Hope to hear from you guys!

:rock:
 
 
Oh thanks! :)

I am currently at work and was going to really search out the forums for stuff later. But thank you for pulling those out for me, really appreciate it :)
 
Hi bdshakes,

I started the medical marijuana last yr. My Epileptologist wanted me to try it since I've been on over 10 different seizure meds and none of them stopped my seizures. I've also had 2 brain surgeries to help reduce my seizures. I have absence, complex partial and simple partial (aura) seizures. I still take my seizure med but twice a day I use the CBD oil and last yr. I had the least amount of seizures in 45 yrs. If you check out health hemp oil.com they have all different types of medical marijuana and I've found that the mouth spray has worked the best for me. I squirt it in my mouth twice a day and it's 1.25 mg. with each spray. I get it in the mint flavor. It cost me around $84.00 for 2 ounces which last me about 6 months. As I mentioned just check out health hemp oil.com and if you get any cbd they will send it by mail but if it doesn't work you have 90 days to get your money back. Wishing you the best of luck and May God Bless You!

Sue
 
CBD oil absolutely works for me, but only in combination with my other meds. It has reduced the number of seizures I was having by more than two thirds. I tale 3 capsules twice a day with my other meds. Doesn't matter if I take it with food, and so far no side effects. Smoked Cannabis also works for me, but it's often hard to find a strain low in THC.
 
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Posted quite a lot on this for someone else:

Notice that 2 of you who posted are still on antiepileptics - a section down the bottom may be relevant to that...as it isn't just benzos and valproate that are metabolized in the liver and a few are partially metabolized there too, making the potential list pretty long.

Stuff on cannabinoids -
Sorry, this is a bit TL;DR, I'd put in links for you but I haven't been here long enough.
This is from a paper Ben Whalley is an author is on. He has been writing about epilepsy and the cannabinoids for a while. I asked about any info when the head of my course gave us a lecture on the cannabinoids and the endocannabinoid system and missed out epilepsy research. At least he emailed me stuff.

'There is a strong tendency to equate “cannabis as a natural therapy” with “cannabis as a safe therapy”. This a priori assumption—the naturalistic fallacy—is countered by many instances of toxic or deadly plants (e.g., amotoxins in mushrooms) and animals (e.g., tetrodotoxin in puffer fish). A more muted naturalistic view is that if side effects occur with cannabis, they would be less severe than those from drugs produced by the pharmaceutical industry. A recent Epilepsia survey of 776 individuals found that 98 % of the general public supported the use of medical marijuana for severe cases of epilepsy, compared with only 48 % of epileptologists. Similarly, the majority of the public and a minority of epileptologists thought that there was sufficient safety (96 % vs 34 %) and efficacy (95 % vs 28 %) data for medical marijuana use in severe epilepsy. This significant disparity in opinion between professionals and the lay public, possibly swayed by the appeal of natural remedies, emphasizes an increased need for further research and public education regarding medicinal cannabis and epilepsy.'

Here is the reference if you want to google the paper, it is all online. Sorry, can't do links yet.
Rosenberg, E., Tsien, R., Whalley, B. and Devinsky, O. (2015). Cannabinoids and Epilepsy. Neurotherapeutics, 12(4), pp.747-768.

This is from a pharmacological paper from this year, it is basically a review of available research and their findings. It is also behind a paywall. If you truly want 6 pages of pharmacology, happy to send it if I can.

'There is accumulating evidence that some cannabinoids have anticonvulsant properties in animal models of seizures and emerging evidence for efficacy in human epilepsies. Despite this empiric evidence, the mechanisms by which these compounds exert anti-seizure effects are poorly understood. The major cannabinoids have multiple targets
within the Central Nervous System and can modulate the activity of neurons, glia, and microglia and it is unknown which mechanism(s) are critical for therapeutic actions.

The pharmacokinetic properties of Δ9-THC, Δ9-THCA, Δ9-THCV, CBD, and CBDV also present unique challenges to use as therapeutic agents including low bioavailability (the fraction of an administered dose of unchanged drug that reaches the systemic circulation) and potentially erratic absorption in oral formulations, significant accumulation in adipose and other tissues, and interactions with certain other drugs ... Some of these problems may be overcome by novel delivery systems (oromucosal, transdermal) or through the synthesis of related compounds with optimized properties. However, the potential interactions with other antiepileptic drugs pose a particular problem for patients with treatment-resistant epilepsy for whom polypharmacy
is the norm.'

In trials for Epidolex, which was granted orphan drug status, there were side effects ranging from vomiting, fatigue, fever, drowsiness, and diarrhea. Eight patients in the group withdrew from the trial because of the severity of the side effects.

In the best-done study for CBD oil, and there aren't many good ones - most lack a decent sample size, length or placebo control; 79 percent of participants reported adverse events, including diarrhea and fatigue, but only 3 percent of them dropped out of the study.
The adverse event rate is not small; according to a letter in the journal Lancet Neurology, it's higher than the side effect rate for other epilepsy drugs.

One thing I didn't appreciate was that some people in the studies were also on other antiepileptics and CBD oil is very good at blocking the liver enzymes that normally break down other drugs such as Clobazam and Valproate.
This drug interaction makes it impossible to say whether reduced seizure incidence seen in study participants was due to CBD by itself or whether it was simply the result of those other medications staying in the system for longer stretches.

So is it the antiepileptics extended time in your system that improves seizure control or is it the CBD oil?
 
Hi Highlander,
I found out I was drug resistant after having a DNA test done and since I started using the CBD oil my seizures have decreased a lot. Yes, my Dr. does have me on meds but they don't work anything like the CBD oil and I've been on that a little over a yr. I was even asked to do a report yesterday with the FDA putting info. in on how the CBD oil was working for me and my seizures. Here's wishing you well and May God Bless You!

Sue
 
Porkette said:
Hi Highlander,
I found out I was drug resistant after having a DNA test done and since I started using the CBD oil my seizures have decreased a lot. Yes, my Dr. does have me on meds but they don't work anything like the CBD oil and I've been on that a little over a yr. I was even asked to do a report yesterday with the FDA putting info. in on how the CBD oil was working for me and my seizures. Here's wishing you well and May God Bless You!

Sue
Click to expand...

Hi Sue

Can't be bothered to write it all out in my own words again so basically just going to C&P.

CBD oil is very good at blocking the liver enzymes that normally break down other drugs. This drug interaction makes it impossible to say whether reduced seizure incidence seen in study participants was due to CBD by itself or whether it was simply the result of other antiepileptic medications staying in the system for longer stretches.

The list of antiepileptics that are metabolised or partially metabolised in the liver is pretty long.

If you are on a drug combo with CBD oil and an antiepileptic/s that is/are metabolised or partially metabolised in the liver then the pharmacokinetics have changed.

How do you honestly know it is the CBD oil or the change in the pharmacokinetics of the meds you are currently on, which I take it you aren't resistant to?

Regards

Highlander
 
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Reading through many of the published studies on CBD oil and it's effects on the CYP450 family of enzymes it would appear the research results are all over the place. Old studies show CBD to be an inhibitor and new studies are showing it to be both an inhibitor and an inducer.

There are 57 different (human) CYP450 enzymes but roughly 12 are responsible for metabolizing the majority of substances that the liver metabolizes.

Here are a few consistencies I have read. No studies I have found show CBD oil to shut down the entire CYP450 family of enzymes. Many studies show it to temporarily inhibit CYP3A4 and CYP3A5.

CYP3A4 inhibition is the most likely issue since it is induced by the anti-epileptic drugs, carbamazepine/ oxcarbazepine, Dilantin, Topamax and phenobarb, and the benzos are substrates.

Many studies are showing this inhibition to not be dose dependent but delivery method dependent, when CBD is ingested and passes through the digestive track the inhibition occurs, but when CBD taken by the sublingual, transdermal, or smoking routes, the inhibition does not occur.

Also in practice, doctor's using CBD on patients, while monitoring blood levels of drugs that should be changed by CYP450 inhibition, are not seeing changes in blood levels of these drugs or their metabolites. This could be because the effects of CBD on the CYP450 enzymes is only temporary.

It would seem that the studies are not settled yet and much more research will be needed.

The safest thing would appear to be that if you are going to add CBD products to your seizure medications you should do so under a doctors supervision while monitoring blood levels of antiepilpetic drugs that are CYP450 inducers or substrates.
 
Frink said:
Reading through many of the published studies on CBD oil and it's effects on the CYP450 family of enzymes it would appear the research results are all over the place. Old studies show CBD to be an inhibitor and new studies are showing it to be both an inhibitor and an inducer.

There are 57 different (human) CYP450 enzymes but roughly 12 are responsible for metabolizing the majority of substances that the liver metabolizes.

Here are a few consistencies I have read. No studies I have found show CBD oil to shut down the entire CYP450 family of enzymes. Many studies show it to temporarily inhibit CYP3A4 and CYP3A5.

CYP3A4 inhibition is the most likely issue since it is induced by the anti-epileptic drugs, carbamazepine/ oxcarbazepine, Dilantin, Topamax and phenobarb, and the benzos are substrates.

Many studies are showing this inhibition to not be dose dependent but delivery method dependent, when CBD is ingested and passes through the digestive track the inhibition occurs, but when CBD taken by the sublingual, transdermal, or smoking routes, the inhibition does not occur.

Also in practice, doctor's using CBD on patients, while monitoring blood levels of drugs that should be changed by CYP450 inhibition, are not seeing changes in blood levels of these drugs or their metabolites. This could be because the effects of CBD on the CYP450 enzymes is only temporary.

It would seem that the studies are not settled yet and much more research will be needed.

The safest thing would appear to be that if you are going to add CBD products to your seizure medications you should do so under a doctors supervision while monitoring blood levels of antiepilpetic drugs that are CYP450 inducers or substrates.
Click to expand...
Interesting...

Apologies for the dearth of detailed information on the of biochemistry and pharmacological interactions of the cytochrome P450 superfamily in my previous post. Also, at which point did I say that CBD oil shut down the entire CYP450 family of enzymes?

As you say more research is needed...

These are from the latest papers I can find - Nov 2016 & Aug 2017...

Serum levels of topiramate, rufinamide, and clobazam increased in children and adults with increasing CBD dose
• Serum levels of zonisamide and eslicarbazepine increased in adults with increasing CBD dose
• Adult participants reported sedation more frequently with higher clobazam levels with concomitant CBD dose.
• AST and ALT levels were higher in participants taking concomitant valproate with CBD; In some cases, the valproate dose was weaned or completely discontinued due to increasing or abnormally high AST and/or ALT levels after CBD treatment initiation. These abnormalities were not seen in participants who were not taking valproate in the study, indicating that there was an effect of the combined valproate and CBD on liver functions or that CBD affected the negative effects of valproate on liver functions. This emphasizes the need for drug levels to be monitored during therapy with CBD, but also for routine liver function test analysis in those patients who are taking concomitant valproate.

With regard to metabolism:

There are multiple potential routes of administration for CBD. The most common delivery form for CBD is via the inhaled route as a constituent of smoked cannabis used for recreational or medicinal purposes.
This approach is obviously unsuitable for medicinal drug delivery but highlights the fact that the lungs are a very efficient mechanism for drug delivery. Studies that have examined delivery of CBD through aerosol or vapor using specialised devices have reported rapid peak plasma concentrations (<10 min) and bioavailability of ~31%, although such an approach is limited by the need for specialized equipment and patient cooperation with the administration.

CBD has been delivered orally in an oil-based capsule in some human trials. Because of low water solubility, absorption from the gastrointestinal system is erratic and leads to variable pharmacokinetics. Bioavailability from oral delivery has been estimated at 6% due to significant first-pass metabolism in the liver.

Oral-mucosal/sublingual delivery through sprays/lozenges has similar bioavailability to the oral route but less variability. Most of the data for oral-mucosal delivery comes from studies of nabiximols oral spray, which is a mixture of ~1:1 Δ9-THC and CBD. Serial measurement of serum CBD levels in healthy volunteers after a single dose of nabiximols containing 10 mg each of CBD and THC has demonstrated a Cmax of 3.0 ± 3.1 µg/L and Tmax of 2.8 ± 1.3 hrs.

Transdermal approaches to CBD delivery have also been investigated, but due to CBD’s high lipophilicity, special ethosomal delivery systems are needed to prevent drug accumulation in the skin, currently these are too impractical and costly.

Care to reference? Rather interested as not many really good studies have been done are the normal moans. Teensy sample sizes and what not.

Take care

Highlander
 
Hi Highlander,

After being on CBD for a few months my Epileptologist lowered the dosage of 2 of my seizure meds because after I started using the CBD the seizures decreased as I mentioned so there's less drugs in my system and in turn my seizures are still lowered with the CBD oil. If you go on line and go to the FDA you may be able to find detail on how CBD is either helping or hurting people. I wish you only the best and May God Bless You!

Sue
 
Hi Sue

I'm not 'for' or 'against' CBD oil. I just think there definitely needs to be more research.

Also, there are more interesting new drugs with antiepileptic properties in the pipeline.

It is my understanding that for the FDA to approve a drug they expect the pharmaceutical firms to submit results from two well-designed clinical trials. The company then sends CDER the evidence from these tests to prove the drug is safe and effective for its intended use. A team from the Center for Drug Evaluation and Research reviews the company's data and proposed labeling.
If this independent and unbiased review establishes that a drug's health benefits outweigh its known risks, then the drug is approved for sale. The CDER doesn't actually test drugs itself.
If you go on line you may be able to find research that has been sent to the FDA.
What research do you think I've been looking at if I'm interested in this.

I'm not a believer. Chill.

Highlander
 
CBD has helped me.

I am medication resistant......But i still take 6 drugs between epilepsy, insomnia & being bi-polar.

Get real MJ, CBD made from hemp is not worthless......but does not give results like CBD & THC together.

If you fear getting "hi", please know that you can consume a good amount of THC, have a "hi" and consume CBD that will bring down & ease the effects of the THC.

I shoot for a 5/1 ratio, CBD to THC. You get no hi at all like this. I sometimes consume just THC for rotator cuff and lower back pain though.

Of course more testing would be great......But one has to think, if CBD can cure or improve a long long list of major medical issues.....................What will that do for major pharma companies.

People begin to use 25/45% less prescription drugs, that will not go over well. Lobbyist's, political figures and so on who get paid or sponsored by Pfizer, Johnson & Johnson, Astra Zenca, etc will begin to do what they can.


Just like the tobacco industry, the spend and sponsor a million political issues.
 
You have contradicted yourself in your 2nd sentence.

Do you really think that Pharma companies are dragging their heels regards testing because people would stop using prescription drugs?

While you shoot for a ratio that works for you but may not work for others because of individual idiosyncrasies relating to the efficiency of absorption, distribution, and metabolism relating to the physiological differences of age gender etc. the drug companies are going through the lengthy process of trying to get a one size fits all-ish dose utilising clinical trials.

Although it was never approved in the US Thalidomide basically changed the way that all drugs would be tested forever.

'They' know about it and 'they' want to utilise it, i.e sell it as a measured dose prescription drug so you don't have to guess whether what someone says on a forum will be any good for you, it will have gone through years of testing to work it out. Epidolex has already been given orphan drug status.

The Pharmaceutical Industry isn't scared they are possibly as pleased with all the potential of cannabinoids as they were when they realised what HFC was doing as a rampant food additive.

And that last little bit isn't mad conspiracy my husband worked at a particular pharma company where they churned out strips for diabetic testing by the ton - all hell broke loose if production went down.
 
Highland


I am glad you posted. After my long tough day I needed a good solid laugh

Thank you
 
Glad you posted too...

'Fool giggle on and waste thy wanton breath'

FRANCIS QUARLES, Emblems

Happy to explain anything you didn't really understand but basically, Huxley was right.

Regards

Highlander
(that's with a 'er' by the way denoting residence or birthplace, not geography....spend less time pumping iron)
 
If marajuana works for MS sufferers I can't see how it wouldn't help with epilepsy. Sadly over here people have to break the law and go to back street dealers to medicate themselves and all because of the stigma that surrounds the use of cannabis. We are so far behind other countries that it's shameful!
 
Highlander said:
Glad you posted too...

'Fool giggle on and waste thy wanton breath'

FRANCIS QUARLES, Emblems

Happy to explain anything you didn't really understand but basically, Huxley was right.

Regards

Highlander
(that's with a 'er' by the way denoting residence or birthplace, not geography....spend less time pumping iron)
Click to expand...


I do not believe you have consumed much CBD or THC, tough for you to comment on their effects if you do not have active experience.

But ill go back to pumping iron. your too bright for me
 
From what I've read (here) CBD oil helps nearly everyone. I didn't read every word, sorry, so I may have skipped over some important parts. Any recommendations? As in, how often? How much?
Because my neurologist and my neurosurgeon didn't like the idea. So they didn't give me tips or a card, I got it from a nurse (NP).
Point being, what are your recommendations? Because the people at the dispensary aren't experts, neither are you, but you all have experience.
 
fina,

email me, i will send you a pic of the CBD rich mj i buy. a pic of the label.

it is .88% thc, 26.02% CBD. you get no "hi" effect at all from it. Dispensary only have little bits of CBD because everyone with a card is looking to get hi.

I have to bitch and wine that they need to carry more CBD mj n just CBD products alone.

I cook the MJ in oil, butter, any fat on extra low for 90 min. Everything comes out of the mj and into your oil. Then you can make anything you want with it. Look up cana butter, its a machine that does it all for you.

But if you goto the dollar store, buy items you will only cook mj with......you should be able to buy all the parts for 15/20 bux.

Most CBD products, just CBD, are not the best because they come from Hemp. Hemp is any MJ with lower then 2 or 3% THC. Grown in large, large amounts for the big CBD craze.

The processes used to extract enough CBD from MJ thats 2% compared to 25%.......involves tons of extra shit. I only know so much by memory, but i could find some literature stating facts.

i have some charlottes and holden hope CBD paste/juice just sitting in the fridge....for like a year now.

You can see on their sites, its HEMP oil. read up on hemp vs mj

you will not want any HEMP derived CBD product.
 
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