Cannabidiol (CBD) — Epidiolex

[StoneInFocus]

Cannabidiol (CBD) is a non-psychoactive cannabinoid found in the cannabis plant. It is available on prescription under the brand name Epidiolex as an anti-epilepticum. Some people on Tinnitus Talk have reported improvements in their tinnitus and hyperacusis after taking CBD in one form or another. Based on a scanning of the various threads dedicated to this substance, I am under the impression that most of the user experiments have been conducted with full spectrum CBD oil. The results of these experiments have been mixed, according to a poll of one of these threads, some people reported improvements, some reported a deterioration of their condition or severe side effects, but the vast majority did not notice any improvements at all. I suspect that these mixed results are due to several factors:

1. Users have been experimenting with different dosages of CBD.
2. Users have been experimenting with different concentrations of THC in their CBD product. Some people for instance reported an induction of anxiety after consuming a full spectrum CBD product.
3. Users consumed incorrectly labelled CBD products. Multiple studies have found out that a lot of the commercially available CBD oils do not contain the same amounts of CBD and THC as is stated on the package.
4. CBD products such as oils available in drug stores contain significantly less CBD than is used in the treatment of epilepsy.
5. In the treatment of epilepsy, only CBD isolate is used. No other cannabinoids are present in Epidiolex.

Now is also the first time that we have a theoretical explanation for the potential tinnitus and hyperacusis treating properties of CBD, which warrants another thread on 'Treatments' instead of on the alternative treatment section. A research published in February 2022 found that administration of cannabidiol opened Kv7.2/7.3 channels in hamsters. These particular potassium channels are also the subject of Professor Thanos Tzounopoulos' investigation and the target of the developing tinnitus drug RL-81, which has been successfully used to prevent the induction of tinnitus in mice.

The standard dosage of Epidiolex is as follows:

• 2.5 mg/kg PO BID initially; after 1 week, may increase to maintenance dose of 5 mg/kg BID
• If 5 mg/kg BID tolerated and further seizure reduction required, patient may benefit from a dosage increase up to a maximum recommended maintenance dosage of 10 mg/kg BID (ie, 20 mg/kg/day)
• Increasing to 10 mg/kg BID may be achieved by increased weekly increments of 2.5 mg/kg BID, as tolerated
• If a more rapid titration from 10 mg/kg/day to 20 mg/kg/day is warranted, the dosage may be increased no more frequently than every other day
• Administration of the 20-mg/kg/day dosage resulted in somewhat greater reductions in seizure rates than the recommended maintenance dosage of 10 mg/kg/day, but with an increase in adverse reactions.

I've ordered an appropriate dosage of CBD isolate powder from the United Kingdom this morning. I am planning on mixing it with MCT oil and creating a tincture. I hope the package is sent on its way as soon as possible. I'll report about my experiences in this thread. Feel free to comment, ask questions, and report your own experiences too.

Further information, risks and side effects

 

[CRGC]

Very interesting! Thanks for the post. Will be following this.

 

[BrysonKingMe]

Cannabidiol (CBD) is a non-psychoactive cannabinoid found in the cannabis plant. It is available on prescription under the brand name Epidiolex as an anti-epilepticum. Some people on Tinnitus Talk have reported improvements in their tinnitus and hyperacusis after taking CBD in one form or another. Based on a scanning of the various threads dedicated to this substance, I am under the impression that most of the user experiments have been conducted with full spectrum CBD oil. The results of these experiments have been mixed, according to a poll of one of these threads, some people reported improvements, some reported a deterioration of their condition or severe side effects, but the vast majority did not notice any improvements at all. I suspect that these mixed results are due to several factors:

1. Users have been experimenting with different dosages of CBD.
2. Users have been experimenting with different concentrations of THC in their CBD product. Some people for instance reported an induction of anxiety after consuming a full spectrum CBD product.
3. Users consumed incorrectly labelled CBD products. Multiple studies have found out that a lot of the commercially available CBD oils do not contain the same amounts of CBD and THC as is stated on the package.
4. CBD products such as oils available in drug stores contain significantly less CBD than is used in the treatment of epilepsy.
5. In the treatment of epilepsy, only CBD isolate is used. No other cannabinoids are present in Epidiolex.

Now is also the first time that we have a theoretical explanation for the potential tinnitus and hyperacusis treating properties of CBD, which warrants another thread on 'Treatments' instead of on the alternative treatment section. A research published in February 2022 found that administration of cannabidiol opened Kv7.2/7.3 channels in hamsters. These particular potassium channels are also the subject of Professor Thanos Tzounopoulos' investigation and the target of the developing tinnitus drug RL-81, which has been successfully used to prevent the induction of tinnitus in mice.

The standard dosage of Epidiolex is as follows:

• 2.5 mg/kg PO BID initially; after 1 week, may increase to maintenance dose of 5 mg/kg BID
• If 5 mg/kg BID tolerated and further seizure reduction required, patient may benefit from a dosage increase up to a maximum recommended maintenance dosage of 10 mg/kg BID (ie, 20 mg/kg/day)
• Increasing to 10 mg/kg BID may be achieved by increased weekly increments of 2.5 mg/kg BID, as tolerated
• If a more rapid titration from 10 mg/kg/day to 20 mg/kg/day is warranted, the dosage may be increased no more frequently than every other day
• Administration of the 20-mg/kg/day dosage resulted in somewhat greater reductions in seizure rates than the recommended maintenance dosage of 10 mg/kg/day, but with an increase in adverse reactions.

I've ordered an appropriate dosage of CBD isolate powder from the United Kingdom this morning. I am planning on mixing it with MCT oil and creating a tincture. I hope the package is sent on its way as soon as possible. I'll report about my experiences in this thread. Feel free to comment, ask questions, and report your own experiences too.

Further information, risks and side effects

I think another reason that there are such mixed results are some products are created using the hemp plant, and other products are created using marijuana. I'm assuming you have purchased hemp CBD as you are in the UK. I believe the research paper you linked uses "cannabis sativa", which is marijuana.

I have yet to find CBD oil that is created from marijuana, but includes zero THC, which always spiked my y, even when it was super mild. I'll look around, I'm in a legal state.

I just purchased a 50:1 CBD/THC, mixed in MCT oil (made from marijuana). I have previously vaped CBD/THC oil in a 25:1 ratio, but it didn't have any noticeable effect, so I figured I'd try a tincture.

I started with 16 mg earlier today and plan to take another 16 mg before bed tonight.

My reasoning for purchasing this is because I read the same article on how CBD can be a potassium channel opener, so interesting that you have posted this today.

I'll let you know if I see any changes.

EDIT #1:

To add to this, it looks like the drug you linked is made from marijuana, not hemp. I'm not knowledgeable enough to know the differences between CBD from hemp and marijuana, if there is a difference.

FDA Approves First Drug Comprised of an Active Ingredient Derived from Marijuana to Treat Rare, Severe Forms of Epilepsy

EDIT #2:

I misread your comment, I don't know where you are but you ordered from the UK, so probably hemp. Again I don't know if this even matters.

EDIT #3:

Cannabis sativa can be both hemp and marijuana.

The research paper you posted says cannabis sativa, but does not say anything about hemp or marijuana specifically. The link I posted, referencing Epidiolex, says Epidiolex is derived from marijuana.

 

[StoneInFocus]

Cannabis sativa can be both hemp and marijuana.

The research paper you posted says cannabis sativa, but does not say anything about hemp or marijuana specifically. The link I posted, referencing Epidiolex, says Epidiolex is derived from marijuana.

In the study on potassium channels CBD isolate was used, or in other words pure cannabidiol. CBD is a cannabinoid on its own. There is no difference between CBD extracted from marijuana plant and CBD from a hemp plant. Epidiolex is pure cannabidiol.

I know the whole thing is kind of confusing. The typical "CBD" oil you find in the drug store is extracted from industrial hemp, which contains other cannabinoids and trace amounts of THC as well. CBD isolate exists in the form of powder or crystals and is the result of a second extraction.

 

[JPGL]

Does Epidiolex need to be prescribed by a doctor?

 

[StoneInFocus]

Does Epidiolex need to be prescribed by a doctor?

Epidiolex as in the brand, as far as I know, yes, but you can buy CBD isolate (the active substance of Epidiolex) freely.

So, I've already briefly discussed my current situation in the Suicidal thread.

I have great reasons to suspect the batch of CBD isolate I've been sold is a diluted product and contains other cannabinoids as well (and God knows what else).

Yesterday, after consuming 1,25(bodyweight)mg of CBD powder I experienced, among other things such as a burning sensation in my throat and a so called cotton mouth, a tinnitus spike and feelings of anxiety. I think these particular side effects might be due to possible THC residue in my CBD isolate. I've also noticed that my CBD "isolate" has a faint but unmistaken cannabis smell, which true CBD isolate should not have at all.

I've ordered a test kit to check if my CBD isolate contains traces of THC.

I am also planning to order a small sample size of CBD isolate from a more trustworthy company to see if the side effects I've experienced yesterday reoccur.

I'll keep you updated.

 

[StoneInFocus]

I've ordered a test kit to check if my CBD isolate contains traces of THC.

UPDATE:

So I've just performed the test with a small sample of the supposed CBD isolate I've received
and my suspicions were true, it does contain THC.

I'm slightly relieved because now there is at least a possibility my tinnitus spike can be attributed to the THC instead of the cannabidiol.

I'll continue searching for a reliable CBD vendor in Europe that also sells isolate in small quantities,
not an easy task.

You'll hear from me.

 

[scotty03874]

UPDATE:

So I've just performed the test with a small sample of the supposed CBD isolate I've received
and my suspicions were true, it does contain THC.

I'm slightly relieved because now there is at least a possibility my tinnitus spike can be attributed to the THC instead of the cannabidiol.

I'll continue searching for a reliable CBD vendor in Europe that also sells isolate in small quantities,
not an easy task.

You'll hear from me.

I tried CBD suppository before. They helped lower my tinnitus I just ordered more. I'll keep everyone posted.

 

[StoneInFocus]

I tried CBD suppository before. They helped lower my tinnitus I just ordered more. I'll keep everyone posted.

Great, what dosage did you use? Did you use a full-spectrum product or an isolate?

 

[scotty03874]

Great, what dosage did you use? Did you use a full-spectrum product or an isolate?

I took one yesterday and my tinnitus was very low all day long. I'm going to take one per day and keep notes on my tinnitus levels.

 

[StoneInFocus]

I took one yesterday and my tinnitus was very low all day long. I'm going to take one per day and keep notes on my tinnitus levels.

I am glad you saw an improvement in your tinnitus but "one" still doesn't tell us how much mg of CBD that is.

Also, I've made this thread specifically for CBD isolate, so if your stuff contains other cannabinoids as well, I'll gently direct you to the Alternative Treatments and Research section as to avoid further clouding an already confusing topic.

Thank you.

 

[Hottopic29]

Wait, they sell CBD suppository...

 

[StoneInFocus]

Wait, they sell CBD suppository...

Yeah, I don't care how bad my tinnitus gets, my asshole is an exit, not an entry lol.

But in all seriousness, my CBD isolate just came in, I am going to start with a very small dose tomorrow.

 

[StoneInFocus]

I am sorry guys but I just took a quick whiff of the powder, and I noticed my CBD 'isolate' smells like weed AGAIN!

I have contacted the company and I am probably going to order another THC testkit.

Let's hope it does not contain THC, otherwise I'll have to look for yet another distributor to get CBD isolate from.

My patience is really being tested here.

 

[Hottopic29]

I am sorry guys but I just took a quick whiff of the powder, and I noticed my CBD 'isolate' smells like weed AGAIN!

I have contacted the company and I am probably going to order another THC testkit.

Let's hope it does not contain THC, otherwise I'll have to look for yet another distributor to get CBD isolate from.

My patience is really being tested here.

I'm confused. CBD from hemp is the one with 0% THC. It's impossible to actually get just CBD from marijuana unless it is made from hemp.

You don't want hemp CBD. Hemp is used to clean up toxic contaminants from contaminated soil since it's so absorbent. Where hemp is grown and what they put on it makes it dangerous.

 

[StoneInFocus]

I'm confused. CBD from hemp is the one with 0% THC. It's impossible to actually get just CBD from marijuana unless it is made from hemp.

You don't want hemp CBD. Hemp is used to clean up toxic contaminants from contaminated soil since it's so absorbent. Where hemp is grown and what they put on it makes it dangerous.

I think you are confusing a full spectrum CBD product with CBD isolate. The discussion in this thread is about isolated cannabidiol, which is a singular substance.

 

[Hottopic29]

I'll have to look into this more. I think it will help people whose tinnitus is more neck or TMJ related than it would hearing damage related tinnitus, with its relaxing effects.

 

[StoneInFocus]

I'll have to look into this more. I think it will help people whose tinnitus is more neck or TMJ related than it would hearing damage related tinnitus, with its relaxing effects.

This is not true, theoretically cannabidiol should help specifically with hearing damage related tinnitus because of its ability to open Kv7.2/7.3 channels. Considering the "relaxing effects" you mention, those are related to THC, not cannabidiol itself.

Anyway, I've received a reply from the company, they said the powder should be THC free, but that it could've absorbed the cannabis smell from the facility in which it is processed.

I should receive a THC test kit soon, we'll see what comes out of it.

 

[StoneInFocus]

I should receive a THC test kit soon, we'll see what comes out of it.

So I tested my CBD isolate from Zero Point Extraction and it turned out to contain THC (don't know how much).

According to the lab results of ZPE's CBD isolate (which I'm not really sure I trust a 100 percent), their product contains 0 mg per gram of powder (more accurately, there is no THC detected). I might give it a try and hope the THC quantity is negligible enough as to not cause any psychotropic effects whatsoever.

I also contacted another company, GVB Biopharma, and someone of their customer service sad that their CBD isolate could still contain 0.04% THC. It might not seem like much, but if you take an epilepsy dose of 1000 mg per day for example, you are still ingesting 40 mg of THC per day, which is considered a heavy dose according to Psychonautwiki. Yet on their website, GVB Biopharma claims that "there isn't enough of this intoxicating cannabinoid present to register with even the most advanced testing equipment", which just seems like a total contradiction to me.

So it seems like the majority of CBD vendors are just straight up unreliable. For now Epidiolex is still unavailable to me, so unfortunately that is not an option. I don't really know what to do at this point. Your input is greatly appreciated.

 

[StoneInFocus]

I also contacted another company, GVB Biopharma, and someone of their customer service sad that their CBD isolate could still contain 0.04% THC. It might not seem like much, but if you take an epilepsy dose of 1000 mg per day for example, you are still ingesting 40 mg of THC per day

I'm sorry but what I wrote is not entirely correct. GVB Biopharma claims that they can test their CBD isolate for THC up to 0.1%. They simultaneously claim "there isn't enough of this intoxicating cannabinoid present to register with even the most advanced testing equipment" which seems like a total lie (more on that later).

I've done some more research, and there are pharmaceutical grade CBD isolate products available. One particular CBD product available at a pharmacy in my country could contain up to 0.02% THC. The great problem is its price; about 30 cent per mg of cannabidiol. It's simply too expensive if you want to use epilepsy doses.

I've tried to look for other US-based CBD isolate suppliers in the higher price categories but it's such a confusing mess. Although many vendors supply a certificate of analysis along with their product, the crucial question here is whether the product the customer receives is of the same substance as is tested in the laboratory. So far it seems that as a customer there is simply no way to know for sure. That means that lab results alone are pretty much meaningless in determining whether a product is accurately labelled. What's also confusing is that different laboratories employ different instruments for detecting cannabinoids. This means that some laboratories might detect THC up to 0.01%, while others detect just up to 0.1%, which is basically a difference between a usable and an unusable product.

Any CBD-only product outside of Epidiolex is entirely unregulated in America. What also doesn't help is that the FDA doesn't want to regulate CBD as a dietary supplement. Corrupt forces might be at play here.

Anyway, if we want to use cannabidiol at higher doses it seems that we have to find a reputable CBD vendor from which a CBD product has been tested independently at least once, such as here, and who simultaneously tests their CBD isolate down to a low enough level as to be usable daily.

So far no luck.

 

[Martin69]

I have read a story about getting rid of panic attacks, anxiety and depression with CBD oil. The story can be found on https://www.meinwegausderangst.de/mga01/. But it is in German.

I hope that also tinnitus can be reduced by using CBD oil or it least makes me calmer.

I have ordered the CBD oil (in Germany, you can get it without THC) and will test it as soon as possible.

I can only start with it in about 3 weeks since I am currently in a clinic and will be home again in 3 weeks.

I will let you know if the CBD oil does anything for me.

 

[StoneInFocus]

You can't make this up but thanks to the customer service of Ez Test Kits I just found
out that their THC testkit tests positive for both THC and CBD, even though their website states that it "solely tests for THC."

Anyway, apparently Leafreport also tests CBD isolate products for label accuracy.

I'm currently working on recording the lab results of CBD isolate products tested by Leafreport compared to the lab results of the corresponding vendor, along with some other information in a table. I still need to find out what limits of detection Leafreport employs for their product testing. Hopefully they'll respond to my emails soon.

 

[dd314]

I took one yesterday and my tinnitus was very low all day long. I'm going to take one per day and keep notes on my tinnitus levels.

Did you use isolate?

 

[scotty03874]

Did you use isolate?

Isolate meaning being by myself? Confused by your question...

 

[ajc]

Isolate meaning being by myself? Confused by your question...

CBD isolate is a form of CBD, or cannabidiol, which is a chemical compound present in the cannabis plant. Unlike full-spectrum CBD products, CBD isolate does not contain any THC — the psychoactive component of cannabis.

So @dd314 was asking if you used CBD isolate.

 

[scotty03874]

CBD isolate is a form of CBD, or cannabidiol, which is a chemical compound present in the cannabis plant. Unlike full-spectrum CBD products, CBD isolate does not contain any THC — the psychoactive component of cannabis.

So @dd314 was asking if you used CBD isolate.

"No THC" is what I purchased, except like 0.03%. THC gives me massive panic attacks. That's the worst thing for my tinnitus/ hearing loss and anxiety.

 

[JPGL]

"No THC" is what I purchased, except like 0.03%. THC gives me massive panic attacks. That's the worst thing for my tinnitus/ hearing loss and anxiety.

@scotty03874, what brand are you taking?

 

[CRGC]

I also contacted another company, GVB Biopharma, and someone of their customer service sad that their CBD isolate could still contain 0.04% THC. It might not seem like much, but if you take an epilepsy dose of 1000 mg per day for example, you are still ingesting 40 mg of THC per day, which is considered a heavy dose according to Psychonautwiki.

Reading up on your experiments with CBD. Just a heads up: 0,04% of 1000 mg would amount to 0.4 mg of THC and not 40 mg. You would need a 4% ratio to amount to 40 mg of THC per 1000 mg. So maybe the GVB isolate would be a possible option for you to try after all?

 

[StoneInFocus]

Reading up on your experiments with CBD. Just a heads up: 0,04% of 1000 mg would amount to 0.4 mg of THC and not 40 mg. You would need a 4% ratio to amount to 40 mg of THC per 1000 mg. So maybe the GVB isolate would be a possible option for you to try after all?

True, I've made a mistake with my calculation, but 0.4 mg is still way too much for me on a daily basis. Extract Labs' CBD isolate contains supposedly less than around 0.000281% THC, and has been tested by Leafreport on its cannabidiol but surprisingly not its THC content. I've tried emailing Leafreport about it but to no avail. Some other CBD isolate products are by tested and marked by Leafreport as containing 0% THC, but I don't know precisely what percentage of purity that is supposed to be. I could email the laboratory with which Leafreport is affiliated, if I find a better option for CBD isolate that is actually tested for THC by Leafreport. I haven't spent much time on this to be honest, I've been very busy with other things so apologies for that. But for the moment Extract Labs' isolate is my main candidate for ordering.

 

[CRGC]

I haven't spent much time on this to be honest, I've been very busy with other things so apologies for that. But for the moment Extract Labs' isolate is my main candidate for ordering.

Thanks for the info! No stress, keep us updated when you have the time. I'm currently taking CBD as a sleep aid, so at lower doses than the protocol you listed, but I'm enjoying its effects and tolerating it well. For this reason, I'm considering maybe trying it at higher doses myself at some point. I'll update this thread if I do.