Cannabidiol (CBD) — Epidiolex

I've noticed the differences between Epidiolex, CBD isolate and CBD oil has left some people confused.

Therefore I've made this table to clear things up.

mKFGpFol.jpg

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.
Good luck, looking forward to hearing from you.
 
I also want to share this video on how to make your own tincture using CBD isolate.

The guy in the video uses 1000 mg CBD per 30 ml of oil, but you can also use as much as 6000 mg per 30 ml oil, and maybe even more.

 
I just smoked some CBD because my tinnitus is severe and I have moderate noxacusis. It seems to make me not care about the tinnitus. Even though it's screaming loud, I'm calm and clear headed.
 
If you're that desperate, why not just give cannabidiol isolate a shot?

For less than a hundred bucks you can get very pure powder.

It acts on the same potassium channels and the risks are relatively well known. Just make sure to actually get CBD isolate powder, not any full spectrum oil.
Where can this be ordered from? Can you take it while on benzos?
 
Where can this be ordered from? Can you take it while on benzos?
There are multiple vendors from which you can order CBD isolate from. It depends on the purity you want and the price you are willing to pay. I currently haven't ordered anything yet because I've just been too busy, but the CBD Isolate from Extract Labs is one of the purest powders on the market. You can get it from here.

Concerning whether or not you can take it with benzos, that is something you absolutely have to discuss with the doctor who prescribed you these pills.

You might have to reduce your benzo dose, see this. Also, be sure to read this leaflet.
 
I'm interested in trying this out. CBD oil is freely available in the Netherlands and there are some good Black Friday deals.

I found one that contains 3000 mg CBD (per 30 ml). Would that be a good starting point?
 
I'm interested in trying this out. CBD oil is freely available in the Netherlands and there are some good Black Friday deals.

I found one that contains 3000 mg CBD (per 30 ml). Would that be a good starting point?
According to the protocol quoted by @StoneInFocus, the recommended starting dose is 2.5 mg per kg of body weight per day. So depending on your weight, this oil could be enough for 1-2 weeks.
 
According to the protocol quoted by @StoneInFocus, the recommended starting dose is 2.5 mg per kg of body weight per day. So depending on your weight, this oil could be enough for 1-2 weeks.
Just so you know, the recommended starting dose is actually 2.5 mg per kg of body weight twice per day (BID).
I'm interested in trying this out. CBD oil is freely available in the Netherlands and there are some good Black Friday deals.
I wouldn't let these Black Friday deals seduce you to be honest. If you'd read my first post in this thread, you'd have seen that the vast majority of people on Tinnitus Talk didn't get any improvements from trying CBD oil in regular doses. If you want to try cannabidiol in meaningful dose,s you'll run out of this stuff after a week. Even the cheapest CBD oils available can't compete with CBD isolate price-wise.

Also, you have to keep in mind that people used Retigabine for several months to achieve any lasting effect on their tinnitus. Good chance you wouldn't even notice any improvements after a week. High doses of the CBD tinctures you find in the drugstores and supermarkets will get you stoned for sure. Are you really planning on getting high several hours per day for weeks on end? The THC in itself might do more harm than good for your tinnitus.

CBD oils just aren't suitable for tinnitus treatment. Either making a tincture yourself from trustworthy CBD isolate or getting an Epidiolex prescription is the only valid option for treating tinnitus and hyperacusis.
 
Just so you know, the recommended starting dose is actually 2.5 mg per kg of body weight twice per day (BID).

I wouldn't let these Black Friday deals seduce you to be honest. If you'd read my first post in this thread, you'd have seen that the vast majority of people on Tinnitus Talk didn't get any improvements from trying CBD oil in regular doses. If you want to try cannabidiol in meaningful dose,s you'll run out of this stuff after a week. Even the cheapest CBD oils available can't compete with CBD isolate price-wise.

Also, you have to keep in mind that people used Retigabine for several months to achieve any lasting effect on their tinnitus. Good chance you wouldn't even notice any improvements after a week. High doses of the CBD tinctures you find in the drugstores and supermarkets will get you stoned for sure. Are you really planning on getting high several hours per day for weeks on end? The THC in itself might do more harm than good for your tinnitus.

CBD oils just aren't suitable for tinnitus treatment. Either making a tincture yourself from trustworthy CBD isolate or getting an Epidiolex prescription is the only valid option for treating tinnitus and hyperacusis.
Thanks for pointing this out! Going to look for isolate instead.
 
Guys, if you want any benefit from this at all - use isolate only. Stuff sold at the stores has nowhere near declared amount of CBD and that is what differentiates CBD isolate self-made tinctures and/or Epidiolex; the concentration and purity of CBD.

A week's supply of CBD isolate, as per 10 mg/kg body weigh consumption schedule, runs you about $100/week. I am not sure if you would need months on end of use prior to seeing an effect though. Within a week you should get somewhere and if positive - keep on going. I base my respond on XEN1101 trial and Trobalt feedback. People noticed a change within the first week.
 
I've looked through this thread, but are there any success stories other than theories?
As far as I know, there hasn't been any person yet to try Epidiolex or CBD isolate in epilepsy doses to treat their tinnitus. We are on the very frontier of potential tinnitus treatments.
 
Epidiolex seems to be available in France but it is prescribed for people with epileptic seizures associated with Dravet syndrome.

According to what I read, it has no major side effetcs.

Do you really think it can help tinnitus?

I will talk about it to my psychiatrist next week.
 
Epidiolex seems to be available in France but it is prescribed for people with epileptic seizures associated with Dravet syndrome.

According to what I read, it has no major side effetcs.

Do you really think it can help tinnitus?

I will talk about it to my psychiatrist next week.
If you want your psychiatrist to prescribe you Epidiolex, you need to explain to him why it could work for your tinnitus. Hearing disorders are usually not the department of psychiatrists.

I'd advise you to get him (or any other doctor) to read the transcript of Tzounopoulos' episode on the Tinnitus Talk Podcast: https://www.tinnitustalk.com/podcas...tus-talk-podcast-ep11-thanos-tzounopoulos.pdf

I'd also suggest you read this thread from start to finish. Best of luck.

By the way, my CBD isolate is still in transit, my apologies for not ordering it sooner.
 
Epidiolex seems to be available in France but it is prescribed for people with epileptic seizures associated with Dravet syndrome.

According to what I read, it has no major side effetcs.

Do you really think it can help tinnitus?

I will talk about it to my psychiatrist next week.
I went to my doctor today. Epidiolex is authorized but not sold in France :-(
 
So yesterday I collected my CBD isolate from the post office.

In the package, Extract Labs included a print out of the lab results, which date back to last October.

I took a whiff of the powder in the 5 gram container, the smell was slightly acidic with a very faint odor of cannabis, which isn't too bad I guess. At least miles different from the stuff from HonestCBD and GVB.

I'm going to assume the powder is as pure as the lab results say for now.

I'll probably start with the trial within the next couple of weeks.

Until then.
 
@StoneInFocus, looking forward to your report of how it's going for you. I thought I'd chime in with my own internet findings as I'm looking into things (other than red wine!) that will modulate my tinnitus (one theory is the GABA-agonist, glutamate-antagonist thing for alcohol; in thought, CBD will do similar things for my brain).

This site has a slightly hard-to-follow but probably somewhat well-researched article on dosage and CBD for neurogenesis:

https://indigonaturals.net/blogs/news/research-on-cbd-dosage-for-neurogenesis

I absolutely hate how it's written but the PubMed links make it worth it.
 
Hi everyone, your favorite Tinnitus Talk member is back! :p

First of all I want to apologize for not trying CBD isolate sooner. I hope the long wait did not antagonize you too much.

With that being said, I want to give a small update about my experiences with the substance so far.

I have tried CBD isolate for about a week now. I have dissolved 5 grams of isolate in about 50 ml of olive oil. I have used a tincture to administrate the oil beneath my tongue.

I have used 50 mg, building up to 125 mg once per day in the first couple of days, and 50 mg to 75 mg twice a day in the last couple.

Considering my tinnitus, I have not really noticed the substance having effect on it, whether positive or negative. Either the dose is too low, the usage period is too short, or both, but right now I cannot say anything meaningful about the relationship between the two, except that it does not catastrophically worsen tinnitus as I had experienced in my Flupirtine trial. If any of you were to try it, I would still caution you to start with a low dose, instead of the standard Epidiolex dose, just to be sure it does not have too much of a negative effect on your tinnitus.

Considering my hyperacusis, I do suspect that it has had a slight positive effect on my hyperacusis (for a certain duration), but I cannot really tell for sure. Again, it is still too early for me to tell. But I am fairly optimistic that with higher doses, the positive effects of CBD isolate on hyperacusis will become more evident. The only question is whether the positive effect will be lasting, or only temporary after taking the isolate.

Considering the side effects, I have not really noticed any physical or mental ones, except for maybe a slight tiredness.

I will continue increasing my dose. I think I will start dosing according the Epidiolex schedule this week or next week.

Again, I'd advise anyone to be cautious. Make sure you get comfortable with lower doses first before trying higher doses.

That is all for now. Feel free to ask questions, I will do my best to answer them.

I will keep you updated.
 
I've now completed a week of the recommended Epidolex regimen of 2.5 mg/kg twice a day.

Over the last three weeks I have consumed 5 grams of CBD isolate in total.

There is still not much to report, I don't notice great improvements, but I also do not suffer from major side effects either.

This week I'll increase the dose to 10 mg/kg/day.

Let's hope for the best.
 
CB1 neurons in the DCN:

"However, the presence of CB1 receptors in the DCN was suggested to increase rather than to inhibit tinnitus (Smith and Zheng, 2016)."

Frontiers Review: Pathophysiology of Subjective Tinnitus: Triggers and Maintenance

Citation paper:

Cannabinoids, cannabinoid receptors and tinnitus

The Frontiers Review article is actually fascinating, by the way.
You have copy pasted a single sentence from a 2018 review article citing a 2016 review article written by two authors from a pharmacology department. Just curious what you are trying to say here.
 
Are you really planning on getting high several hours per day for weeks on end? The THC in itself might do more harm than good for your tinnitus.
That's my take on it too. The cure may be more worrisome and troublesome than the condition. Perhaps if someone only used it at night to help get to sleep, but only if it works that way. If you need to have a certain amount in your blood stream and keep it there for it to be effective, then I'd say this would not work for me, for sure.

I was living in Arizona when the state went to legal weed on every level. At first, it prompted everyone to try a lot of different things. There was a sort of expectation that this or that might be effective for certain medical conditions. The CBD cream seem to help people w/ things like joint pain, but otherwise it was a lot of money spent for stuff that just didn't live up to the hype or people's hopes.

As always, your mileage may vary, and what works for someone may not work for another. None of the CBD products helped my tinnitus and the weed itself just made it much worse.
 
That's my take on it too. The cure may be more worrisome and troublesome than the condition. Perhaps if someone only used it at night to help get to sleep, but only if it works that way. If you need to have a certain amount in your blood stream and keep it there for it to be effective, then I'd say this would not work for me, for sure.

I was living in Arizona when the state went to legal weed on every level. At first, it prompted everyone to try a lot of different things. There was a sort of expectation that this or that might be effective for certain medical conditions. The CBD cream seem to help people w/ things like joint pain, but otherwise it was a lot of money spent for stuff that just didn't live up to the hype or people's hopes.

As always, your mileage may vary, and what works for someone may not work for another. None of the CBD products helped my tinnitus and the weed itself just made it much worse.
I am pretty sure I do not notice any THC related psychoactive effects from the CBD isolate I am using now (Extract Labs). I am taking more than a gram of cannabidiol per day at the moment. The CBD isolate I tried previously (Honest CBD Co) already produced psychoactive symptoms similar to THC at just a dose of 100 mg, worsened my tinnitus and produced feelings of panic in me. Only the purest CBD isolate available is suitable for trying high doses. I think the positive effects of common CBD products like oils and 20 mg tablets are either placebo or due to their THC content.
 
Update:

I started my 25mg/kg dosage last Monday.

I am starting to get more confident that cannabidiol helps with pain hyperacusis. If I could try a higher dosage I would, but 25mg/kg/day is already the max.

If I get more certainty that it helps with pain hyperacusis I will post a more detailed update.

Sadly, I am almost at the end of my cannabidiol stack, it will only last me a couple of days.

Tomorrow I am getting my blood checked for my liver health. If everything is alright, I will order new isolate and continue my experiment.
 
I am starting to get more confident that cannabidiol helps with pain hyperacusis.

If I get more certainty that it helps with pain hyperacusis I will post a more detailed update.
Interesting. Look forward to some elaboration on this observance.

Has there been any change in your tinnitus that you've noticed, since your last post?
If everything is alright, I will order new isolate and continue my experiment.
35 grams for $450 (this time)?
 
So apparently it will take about two weeks before the test results come in. I will order new isolate after I've discussed the results with my doctor. Shipping internationally takes about six to eight weeks, so it'll be a while before I can continue with my experiment.

I am quitting cannabidiol cold turkey tomorrow, and keep a small reserve supply in case I get withdrawal symptoms.
Interesting. Look forward to some elaboration on this observance.

Has there been any change in your tinnitus that you've noticed, since your last post?
Considering the effects on my hyperacusis, I think it provides temporary relief for my pain hyperacusis after ingesting the oil. I wasn't sure about this before, but I think a single dose of 12.5mg/kg has made this effect more noticeable. For instance, a couple of times I noticed that my own voice sounds loud but less painful and harsh after taking it. I also noticed that I was less bothered about cars rushing by. As someone who has suffered from pain hyperacusis for 3 years, I don't think this was coincidental. I also do not believe it to be a placebo effect. But it is still too soon to tell for sure whether these results can be consistently replicated.

Considering long term hyperacusis improvements, it is difficult to tell. For the last few weeks my own voice has been pretty painful, more so than usual, but it could be due to the fact that I have been putting way more stress on my ears as well these last couple of months. The sound of rushing cars seem to feel a bit less painful strangely enough. It is interesting to think about the role of potassium channel openers in pain hyperacusis. Do they only prevent pain neurons from firing, or do they have a broader role in treating hyperacusis? Does it even make sense to ingest cannabidiol at fixed times in a day, or is it better to just take a dosage whenever you need?

For tinnitus, I haven't really noticed any positive effect. Since last week my tinnitus has been acting up. I don't know if that is related to the cannabidiol or not. It is important to note that poorer sleep is a known side effect of Epidiolex. I have noticed that my sleep quality has been of a declined quality these last couple of weeks, which could be the cause of my louder tinnitus. I am curious to see whether quitting cannabidiol will improve my sleep.

Even though the results of my experiment weren't exactly what I had hoped, I have reasons to believe that there is hope on the horizon for those with long term pain hyperacusis. I am curious to see what prolonged usage of a dose of 25mg/kg/day does for my tinnitus & hyperacusis. Will the temporary effect become more pronounced the longer I use it? Will my tinnitus start to improve as well? Would it be safe to take a single dose higher than 12.5mg/kg/?
35 grams for $450 (this time)?
That depends on the results of the blood test.

The problem with Extract Labs is that they only sell quantities of 5/25/100/500 g. If my liver values are OK, as in, nothing unusual is noticed, I will order 100 gram (with 25% discount).

If my liver values are compromised, I might have to stop the continues administration of the drug, but maybe it would still be possible to take it occasionally, so I might order 25g.

I will definitely give an update on the results of the blood test.

P.S.: In this study they used a maximum of 50mg/kg/day for patients with tuberous sclerosis complex. I don't know yet where this number comes from and if it is only applicable to TSC patients, but the effects of using even higher single doses than 12.5mg/kg seems like a promising subject of investigation.

Long-term cannabidiol treatment for seizures in patients with tuberous sclerosis complex: An open-label extension trial
 

Log in or register to get the full forum benefits!

Register

Register on Tinnitus Talk for free!

Register Now