Cannabidiol (CBD) — Epidiolex

[haha ear go eeee]

Just received some CBD isolate, going to try this tomorrow.

@StoneInFocus, you started out with 2.5 mg per day, right? What type of scale did you use to measure out those really fine doses? Did you follow the guidelines outlined in the research paper for increasing the dosage?

 

[MadeleineHope]

I think that the acute stabbing pain I experience is related to these neurons in the cochlea. I have not really read much about middle ear dysfunction and hyperacusis.

I am strongly beginning to believe that it's possible that both the burning & stabbing pain may be coming from the trigeminal nerve, since burning & stabbing are both sensations commonly described by people with trigeminal neuralgia.

Just received some CBD isolate, going to try this tomorrow.

Can you please share where you got your isolate from?

 

[StoneInFocus]

Just received some CBD isolate, going to try this tomorrow.

@StoneInFocus, you started out with 2.5 mg per day, right? What type of scale did you use to measure out those really fine doses? Did you follow the guidelines outlined in the research paper for increasing the dosage?

Hey, I'm curious how you obtained the stuff? Epidiolex is off the table?

I hope you mean mg per kg body weight, right?

In the first trial I mainly followed the official Epidiolex dosage as stated on the website, in the second trial I've upped the dosage after every two days with 2.5 mg/kg, starting of with 5 mg/kg. So day 1 & 2, 5 mg/kg, day 3 & 4, 7.5 mg/kg etc.

I don't know the quantity of your CBD isolate, but if you do precisely you could just make a tincture out of the whole batch.

Otherwise you'll need to order a mg scale, which doesn't need to be an expensive one. You could also use a centigram scale, I don't think it matters that much.

I used 175 mg CBD isolate per ml oil. You probably need to heat the mixture up on the stove.

Then you'll need a tincture bottle with a scaled pipette, and a simple syringe to measure out the oil.

I'm just kind of worried your CBD isolate won't be pure enough and this is going to end in a trainwreck. Please be careful.

 

[haha ear go eeee]

Hey, I'm curious how you obtained the stuff? Epidiolex is off the table?

I hope you mean mg per kg body weight, right?

In the first trial I mainly followed the official Epidiolex dosage as stated on the website, in the second trial I've upped the dosage after every two days with 2.5 mg/kg, starting of with 5 mg/kg. So day 1 & 2, 5 mg/kg, day 3 & 4, 7.5 mg/kg etc.

I don't know the quantity of your CBD isolate, but if you do precisely you could just make a tincture out of the whole batch.

Otherwise you'll need to order a mg scale, which doesn't need to be an expensive one. You could also use a centigram scale, I don't think it matters that much.

I used 175 mg CBD isolate per ml oil. You probably need to heat the mixture up on the stove.

Then you'll need a tincture bottle with a scaled pipette, and a simple syringe to measure out the oil.

I'm just kind of worried your CBD isolate won't be pure enough and this is going to end in a trainwreck. Please be careful.

So I obtained it through something called a CandianLP. CBD isn't available by prescription here so this was my next move. I went through a website called Mendo and was able to get a script for isolate by a doctor.

Sorry, how do I find out the mg per kg body weight? I don't start with 2.5 mg in a day?

Yeah, so it's actually not for my noxacusis, I'm getting some really shitty Mast Cell-like symptoms and I'm dropping weight like crazy because I'm only down to like two foods. I haven't gotten it diagnosed yet but I need to try some sort of stabilzer urgently before I wind up in the hospital, that'll be horrible for my ears too.

I mean, if I notice my tinnitus spiking from the isolate I'll just stop it. Honestly, I believe this is the only way to get isolate in Canada, we can't get Extract Labs here. Is my tinnitus spiking the only ear related side effect?

I am strongly beginning to believe that it's possible that both the burning & stabbing pain may be coming from the trigeminal nerve, since burning & stabbing are both sensations commonly described by people with trigeminal neuralgia.

Can you please share where you got your isolate from?

Sure! I got it from here:

https://mendocannabis.ca/en/

You're in Canada too, eh? I'm not sure how you're obtaining CBD, but with a Medical Card through Mendo's doctors you can get products pretty cheap or even free I believe.

The isolate I'm using isn't restocked yet so you won't see it listed, but it's Medipharm Labs CBD Isolate. I can keep everyone posted if I find it makes me too stoned lmao. That way you don't have to waste your money if it's not pure enough.

 

[StoneInFocus]

Sorry, how do I find out the mg per kg body weight? I don't start with 2.5 mg in a day?

This is primary school mathematics but sure, you take your own body weight in kg and multiply that by a certain factor as stated in the dosage schedule. So if you weigh 70 kg and want to you start with 5 mg/kg/day, you take 70 times 5 mg = 350 mg CBD isolate per day. Hope this helps.

I am strongly beginning to believe that it's possible that both the burning & stabbing pain may be coming from the trigeminal nerve, since burning & stabbing are both sensations commonly described by people with trigeminal neuralgia.

If you shoot me some articles I might look into it.

 

[haha ear go eeee]

I am strongly beginning to believe that it's possible that both the burning & stabbing pain may be coming from the trigeminal nerve, since burning & stabbing are both sensations commonly described by people with trigeminal neuralgia.

You know, I totally agree with you on this one. It might even be possible that some of the inner ear pain might be coming from the trigeminal nerve in the ear. I think someone here said the trigeminal nerve loops back around in the inner ear?

This is primary school mathematics but sure

Wow. I don't know what warranted that response but that was pretty rude. But thank you anyways for answering the question.

 

[MadeleineHope]

You know, I totally agree with you on this one. It might even be possible that some of the inner ear pain might be coming from the trigeminal nerve in the ear. I think someone here said the trigeminal nerve loops back around in the inner ear?

Hmm, that's interesting, I hadn't heard that! Do you have any info you can point me to? I'm starting to think in some cases it may entirely be a middle ear issue with trigeminal nerve involvement, since a lot of people with TTS (Tensor Tympani Syndrome) report burning, stabbing, & facial symptoms. And both burning & stabbing sensations can occur with trigeminal nerve. Myriam Westcott even advises treating those with pain hyperacusis as one would patients with trigeminal neuralgia (which makes sense based on the Norena model). Now, I don't agree with Westcott that TTS is harmless & that there is no damage that has been done, but I think the treatment suggestion for pain makes sense with the Norena model. Of course it's possible that in some cases there is involvement of the type II fibers as well (or even solely), but I don't think at this point we can exclude the possibility that it's entirely a middle ear phenomenon, with the overexcitation of the trigeminal nerve occurring due to the constant Tensor tympani muscle contracting.

 

[haha ear go eeee]

Hmm, that's interesting, I hadn't heard that! Do you have any info you can point me to? I'm starting to think in some cases it may entirely be a middle ear issue with trigeminal nerve involvement, since a lot of people with TTS (Tensor Tympani Syndrome) report burning, stabbing, & facial symptoms. And both burning & stabbing sensations can occur with trigeminal nerve. Myriam Westcott even advises treating those with pain hyperacusis as one would patients with trigeminal neuralgia (which makes sense based on the Norena model). Now, I don't agree with Westcott that TTS is harmless & that there is no damage that has been done, but I think the treatment suggestion for pain makes sense with the Norena model. Of course it's possible that in some cases there is involvement of the type II fibers as well (or even solely), but I don't think at this point we can exclude the possibility that it's entirely a middle ear phenomenon, with the overexcitation of the trigeminal nerve occurring due to the constant Tensor tympani muscle contracting.

That's what I'm thinking too!

Given that all 11 patients of Noreña and Fournier's follow-up study had TTTS symptoms with their noxacusis, I'd say there's a majority of us who have these middle ear symptoms that perpetuates the pain. What are the recommended treatments for trigeminal neuralgia?

EDIT:

I finally found the post!

@100Hz said that "From what I've read, I think a good theory is cochlear inflammation that stimulates the trigeminal nerve endings that are actually in the cochlea. The trigeminal nerve apparently links back to the dorsal cochlea nucleus and this fluctuating level of inflammation is what could be causing the excess modulation of dorsal cochlea nucleus neuron activity."

From what I'm taking away from his comment, is that the trigeminal nerve continues deeper in the ear than we thought. It could very well mean that some of the inner ear noxacusis that we feel could actually be the trigeminal nerve being stimulated.

 

[object16]

Since people are talking CBD isolate, and CBD, I did acquire some excellent CBD herb, and I think I dosed myself at around 250 mg last night. That's an enormous dose. Cannabinoids have a strange dose response curve, sometimes taking less is better than taking more. Bottom line - it actually seemed to work for me. There was a minor cannabinoid spike which everyone knows about, but an obvious sedative effect which helped me sleep and I feel pretty good today.

The problem with cannabinoids is you inevitably down regulate the receptors, so taking every day is a bad plan, especially with this high of a dose. Small dose is less likely to result in tolerance.

I did also find a source of CBD isolate and I'm going to see if isolate dissolved in ethanol and administered sublingual has any beneficial effects for me.

CBD isolate is readily available in Canada for pretty reasonable price. I've never used any from the place I'm ordering from, so I'm hoping it's legit.

 

[StoneInFocus]

Since people are talking CBD isolate, and CBD, I did acquire some excellent CBD herb, and I think I dosed myself at around 250 mg last night. That's an enormous dose.

It isn't. Any sedating effect from the stuff you used is most likely from the THC.

My advice to everyone would be to not waste any money on CBD products.

 

[StoneInFocus]

Subtype-specific modulation of human KV7 channels by the anticonvulsant cannabidiol through a lipid-exposed pore-domain site

"We found that CBD modulates the activity of all human KV7 subtypes and that the effects are subtype dependent. CBD enhanced the activity of KV7.2–7.5 subtypes, seen as a V50 shift towards more negative voltages or increased maximum conductance. In contrast, CBD inhibited the KV7.1 and KV7.1/KCNE1 channels, seen as a V50 shift towards more positive voltages and reduced conductance. In KV7.2 and KV7.4, we propose a CBD interaction site at the subunit interface in the pore domain that overlaps with the interaction site of other compounds, notably the anticonvulsant retigabine. However, CBD relies on other residues for its effects than the conserved tryptophan that is critical for retigabine effects. We propose a similar, though not identical CBD site in KV7.1, with a non-conserved phenylalanine being important."

So there we have it. Not only does cannabidiol open Kv7.2/7.3 channels, but also channels 2 till 5.

The interesting thing is, if "retigabine was ultimately withdrawn from the market due to concerns related to adverse events, in part caused by its modulation of other KV7 subtypes", then why doesn't cannabidiol cause similar adverse effects?

 

[StoneInFocus]

Possible reasons why I haven't experienced much success yet:

• I haven't used a high enough dose for long enough. Some people in the Retigabine threads reported immediate...
• .........
• There is a possible effect on tinnitus & hyperacusis but this was offset by my hyperacusis setback or other factors.

Solely because of the fact that cannabidiol was found to open KCNQ channels in vitro we can speculate that cannabidiol affects tinnitus & hyperacusis and/or its underlying disorders.

I want to expand upon the final point that the desired effects of cannabidiol on tinnitus & hyperacusis are counteracted by the presence of bad factors. I think my final point as written in the quoted part, when thinking about 'factors', evoked ideas about 'positive' things like alcohol, increased histamine in diet, and of course sound exposure. However, if we flip the words at the lexical semantical level the statement retains its sentential semantical value while adding a new perspective on the issue:

Possibility: Cannabidiol has a positive effect on tinnitus & hyperacusis but this effect cannot come to fruition because of the absence of certain positive factors. For instance, maybe cannabidiol can only work for tinnitus & hyperacusis if co-administrated with another drug or supplement.

 

[AverageJoe12]

That's what I'm thinking too!

Given that all 11 patients of Noreña and Fournier's follow-up study had TTTS symptoms with their noxacusis, I'd say there's a majority of us who have these middle ear symptoms that perpetuates the pain. What are the recommended treatments for trigeminal neuralgia?

EDIT:

I finally found the post!

@100Hz said that "From what I've read, I think a good theory is cochlear inflammation that stimulates the trigeminal nerve endings that are actually in the cochlea. The trigeminal nerve apparently links back to the dorsal cochlea nucleus and this fluctuating level of inflammation is what could be causing the excess modulation of dorsal cochlea nucleus neuron activity."

From what I'm taking away from his comment, is that the trigeminal nerve continues deeper in the ear than we thought. It could very well mean that some of the inner ear noxacusis that we feel could actually be the trigeminal nerve being stimulated.

How are you feeling these days? Gabapentin is helping me a bit which sort of lends itself to what you posted here about the trigeminal nerve.

 

[BB23]

The trigeminal nerve apparently links back to the dorsal cochlea nucleus and this fluctuating level of inflammation is what could be causing the excess modulation of dorsal cochlea nucleus neuron activity."

From what I'm taking away from his comment, is that the trigeminal nerve continues deeper in the ear than we thought. It could very well mean that some of the inner ear noxacusis that we feel could actually be the trigeminal nerve being stimulated.

The docent I have been seeing said something that would verify this, when I first mentioned my TTTS symptoms to him, he said what I might be feeling (pain, vibrations to sounds and touching face), could be because of the trigeminal nerve acting up due to the chaos in the dorsal cochlear nucleus, since it extends all the way there...

Anyways, originally I came here to say..

Many VSS/HPPD patients also report having their symptoms reduced/eliminated on CBD products. To confirm, you can go on VSS/HPPD boards on Reddit or hppdonline.com. CBD doesn't work for everyone though...

Funny how fixing one of these conditions would probably help with the other...

We desperately need to test a potent Kv7 opener NOW...

 

[Utdmad89]

The docent I have been seeing said something that would verify this, when I first mentioned my TTTS symptoms to him, he said what I might be feeling (pain, vibrations to sounds and touching face), could be because of the trigeminal nerve acting up due to the chaos in the dorsal cochlear nucleus, since it extends all the way there...

Anyways, originally I came here to say..

Many VSS/HPPD patients also report having their symptoms reduced/eliminated on CBD products. To confirm, you can go on VSS/HPPD boards on Reddit or hppdonline.com. CBD doesn't work for everyone though...

Funny how fixing one of these conditions would probably help with the other...

We desperately need to test a potent Kv7 opener NOW...

What doses of CBD?

 

[BB23]

What doses of CBD?

I have no idea. Keep in mind it doesn't work for everybody.

 

[Ksharky13]

Solely because of the fact that cannabidiol was found to open KCNQ channels in vitro we can speculate that cannabidiol affects tinnitus & hyperacusis and/or its underlying disorders.

I want to expand upon the final point that the desired effects of cannabidiol on tinnitus & hyperacusis are counteracted by the presence of bad factors. I think my final point as written in the quoted part, when thinking about 'factors', evoked ideas about 'positive' things like alcohol, increased histamine in diet, and of course sound exposure. However, if we flip the words at the lexical semantical level the statement retains its sentential semantical value while adding a new perspective on the issue:

Possibility: Cannabidiol has a positive effect on tinnitus & hyperacusis but this effect cannot come to fruition because of the absence of certain positive factors. For instance, maybe cannabidiol can only work for tinnitus & hyperacusis if co-administrated with another drug or supplement.

Hi: I have a quick question for you. I've read a lot of your posts on this thread. You've experimented with a number of different CBD oil products, and you've mentioned that some of them spiked your tinnitus. Were your tinnitus spikes permanent or temporary? If temporary, how long did it take to return to baseline?

I'm asking because I've had tinnitus for almost 2 years, along with very high anxiety. My audiologist, who I totally trust, has highly recommended a specific CBD oil (full spectrum, and she doesn't have a financial interest in any brand). I've obviously read about CBD oil spiking some people's tinnitus but can't seem to find any definitive information as to whether tinnitus spikes from CBD oil are permanent or temporary. I would love to see if this CBD oil can help with my anxiety and, as a result, help me cope with my tinnitus. However, I don't want to risk getting a permanent spike from it.

Any insight or information you can provide would be greatly appreciated. Thank you and take care.

 

[StoneInFocus]

Hi: I have a quick question for you. I've read a lot of your posts on this thread. You've experimented with a number of different CBD oil products, and you've mentioned that some of them spiked your tinnitus. Were your tinnitus spikes permanent or temporary? If temporary, how long did it take to return to baseline?

I'm asking because I've had tinnitus for almost 2 years, along with very high anxiety. My audiologist, who I totally trust, has highly recommended a specific CBD oil (full spectrum, and she doesn't have a financial interest in any brand). I've obviously read about CBD oil spiking some people's tinnitus but can't seem to find any definitive information as to whether tinnitus spikes from CBD oil are permanent or temporary. I would love to see if this CBD oil can help with my anxiety and, as a result, help me cope with my tinnitus. However, I don't want to risk getting a permanent spike from it.

Any insight or information you can provide would be greatly appreciated. Thank you and take care.

Hey, I think you've read it wrong, I don't have any experience with regular CBD oil, I made my own using high concentrations of CBD isolate. It's a different ballgame.

I have used impure CBD isolate, which temporarily spiked my tinnitus. However, regular quantities of CBD oil probably won't contain as much THC as I presume was in mine.

Does that answer your question?

 

[Ksharky13]

Hey, I think you've read it wrong, I don't have any experience with regular CBD oil, I made my own using high concentrations of CBD isolate. It's a different ballgame.

I have used impure CBD isolate, which temporarily spiked my tinnitus. However, regular quantities of CBD oil probably won't contain as much THC as I presume was in mine.

Does that answer your question?

Thank you for your response. Yes, you helped to answer my question. The fact that your tinnitus spikes have been temporary gives me a little more confidence to try CBD oil for myself. I am going to be using a full-spectrum brand that is supposed to have less than 0.3% THC. My audiologist says she uses it and actually tested herself after the first couple of months, and THC was not detected. I've become so paranoid about doing anything that could make my tinnitus worse, even to the point of not even taking just one Advil for a headache.

I think I've also developed a case of TTTS, which really has my anxiety amped up to a new level that is not fun at all. It's a never-ending cycle of self-fulfilling prophecy when it comes to tinnitus and anxiety.

Thanks again for your feedback. I hope you are doing well. Take care.

 

[StoneInFocus]

Lots of articles about cannabidiol have been published recently:

https://scholar.google.nl/scholar?as_ylo=2024&q=cannabidiol&hl=en&as_sdt=0,5

At first glance, the research appears quite interesting.