Natural (Herbal) KCNQ Channel Activators for Pain Hyperacusis?

Hi everyone,

I found this article today on how certain herbs act on KCNQ potassium channels. Interestingly, ginger, which seems to help some of us with burning pain, is on the list. And we know from research that a potassium channel activator (retigabine) "suppresses the type II fibers' response to hair cell damage."

So I wonder whether it might not be worth it to experiment with some of these other herbs to see their impact on our symptoms?

Cheers,
Maddy

 

This is an amazing find, thank you. I wonder if that's why ginger works for a large majority of us. It's interesting that it only helps with the burning pain though and not the stabbing, since stabbing pain suggests the type II fibres are being sensitized. Maybe higher amounts of ginger might help with the stabbing as well?

UPDATE:

I can't find ginger mentioned anywhere else in the paper, but I think it's inferring that it may only act on the Kv7.5 channel and not the others. This may be why it doesn't help with the stabbing pain, and only the burning.

@StoneInFocus, @addot, @Lucifer, @Aaron91:

You guys, what do you think of this paper? This might be a bombshell find on new things to try.

 

This is interesting. We were talking about how Kv7.5 might be causing the severe side effects with Trobalt but ginger may be helping with the burning pain due to acting on the Kv7.5.

I always thought burning and stabbing pain were part of the same area so yea, that is surprising that ginger helps the burning pain but not the other.

At this stage I am going to try Tegretol. Clomipramine has too many side effects and there have been some research papers on Tegretol reducing hyperacusis symptoms. Since Tegretol is an anti-epilepsy drug, I hope when BHV-7000 or XEN1101 comes out it will be easy to switch to them without any side effects or the effect of these drugs being reduced because of Tegretol.

 

Rosemary plant, another potassium channel opener:

Ancient medicinal plant rosemary contains a highly efficacious and isoform-selective KCNQ potassium channel opener

 

Here's a link to a review of "241 plants effective in neurodegenerative disorder with special focus on epilepsy and convulsion." Lots of links included to relevant research as well.

 

I'm not entirely sure if ginger helps because it acts on the Kv7.5 channel or because of its anti-inflammatory properties.

I'm pretty sure the burning comes from the middle ear being agitated, whether it's from the muscle itself or the trigeminal nerve being stimulated I'm not sure about. The stabbing seems to come from more the inner ear.

Have you thought about trying some of these plants first before trying medication? It's either this or Epidiolex for me personally.

 

I only get delayed and lingering aching pain and have been really trying to figure out what the underlying issue is. I don’t get stabbing or burning pain (although maybe the ache is just a more minor version of the burning?). I also don’t have fullness or spasms or anything in my middle ear. Any thoughts on where my problem lies?

I’ve tried ginger and it didn’t do anything but I might try some more stuff on this list and report back.

 

I haven’t thought of trying plants, but it would not be possible to get Epidiolex in my country.

It would be nice if these potassium channel drugs could come out soon so we can test the theory on whether it can help with stabbing and burning pain. I still reckon both will be reduced or gone with these drugs targeting the Kv7.2 and Kv7.3 but I’m not ruling out the importance of Kv7.4.

 

After doing a lot of reading on how ginger relieves pain, I'm pretty sure the impact is because of COX-2 inhibition (which then inhibits release of prostaglandins). So yeah, I agree that it's very likely the anti-inflammatory piece that's making the difference.

If you're wanting to try a plant for the potassium channel effects, I suggest considering Cilantro; it's been found to work against seizures. It's high in salicylates though, so I'd suggest maybe taking an anti-oxidant with it (e.g., NAC).

Looking forward to hearing about how it goes if you do decide to try! Maybe there'll be a bonus & you can reduce your tinnitus too

Cheers,
Maddy

 

Thank you so much! Does fitweed work the same way as cilantro? Also, what's the harm in salicylates? Is that ototoxic (sorry if that's a stupid question lol, having major brain fog right now)?

 

@MadeleineHope, what type of cilantro/coriander should I get?

 

No problem. I'm not sure about fitweed; I haven't read the entire article & it's possible you'd have to do some more research.

Salicylates are known to be ototoxic, though this ototoxicity is usually referenced in relation to drugs (the most well-known being Aspirin). In most cases, eating foods rich in salicylates will not be an issue, since it will be hard to ingest a really large amount. But if a person is ingesting supplements, or otherwise purposely ingesting really high amounts of salicylates, it could lead to ototoxic effects. If a person is sensitive to salicylates, they can also experience this ototoxicity at lower levels.

So if you're wanting to ingest higher amounts, it's probably a good idea to take something to try to prevent/decrease any potential ototoxicity as well.

Cheers,
Maddy

It'll probably be easiest to ingest higher amounts of Cilantro using an extract. But I'd dig some more into the research & see what was used in studies.

Cheers,
Maddy

I get delayed & lingering aching pain too. I agree that the aching may be a more minor form of the burning; I get burning too. I think it's likely a matter of the intensity of the sensation.

That is curious though that you don't experience any noticeable middle ear symptoms. Maybe it's a milder injury?

When you tried ginger, what did you use? Have you ever tried tea made from fresh ginger root, boiling crushed/chopped ginger for at least 10 minutes? I also recommend sipping it throughout the day.

Cheers,
Maddy

 

Welp, I think this weird Mast Cell thing may have caused an allergy to Ginger, so I don't really know what to take anymore for this. I don't know if I have an allergy to just Ginger or salicylates though.

I wish I could go stay with my folks and get out of this wet, damp, moldy apartment but they're too far away. I think the drive would kill me. I think I need to try something before I get any more allergies. I just bought some Cilantro too but they're high in salicylates like you said. It might be either Quercetin, Fitweed, or Epidiolex time so I can stay down here longer. Good news is if I can treat my hyperacusis with potassium channel openers, it should help the MCAS.

 

I feel you! Just a thought: Maybe it would be possible to break the trip to your parents up into many shorter trips, staying at Airbnbs in between?

FYI, Quercetin is also high in salicylates, & I'm not sure about Epidiolex in particular, but I've read that CBD oil includes a carrier oil which is often high salicylate as well. I'm not sure about the Fitweed, but it's possible it's high too.

Unfortunately, a lot of plants are high in salicylates :/

 

Yeah that might need to happen. I'm so scared of it getting worse down here. I think before I try moving, I'll try CBD isolate. There's no oil in that I believe.

 

Ahh, I was thinking of CBD oil! Forgot you can smoke it too

Keep us updated on how it goes

 

Rosemary grows in my yard. I just tried it. It did nothing for my tinnitus.

 

You'd probably have to ingest very large amounts of it in order for it to have any effect, hence if you're wanting to experiment with it, it's best to use an extract.

Cheers,
Maddy

 

@MadeleineHope, did you find out what type of cilantro/coriander was used? I tried to ask my doctor to prescribe me Tegretol but they wouldn’t let me so I probably will have to go to the natural route for opening potassium channels.

I don’t know how long it will take for these potassium channel openers such as BHV-7000 and XEN1101 to come out in the market. Hopefully when these drugs come out, I would be able to get a prescription for it but feel like I’m going to get denied again.

 

Oy, that's so frustrating being denied! Can I ask on what basis they denied you? I know Tegretol is used for nerve pain... maybe consulting a neurologist would work? I know family doctors can be reluctant to prescribe specialized meds, unless they were initially prescribed by a specialist.

I don't have any specific details re: the cilantro (haven't looked into it), but I'm sure there's helpful info out there if you do some further research!

 

Basically due to it being off-label and no prior experience in prescribing Tegretol for hyperacusis/noxacusis. I may try a neurologist if I can’t get it prescribed from my doctor. It seems to be the only drug which has success on being able to tolerate more noise and reduce pain whereas the other drugs only reduce the pain.

 

Have you tried DAO? I have a ton of health problems and one of them is gut biome issues creating histamine problems. Taking NaturDAO before meals has helped a ton. It gets rid of the constant inflamed feeling.

I also unfortunately suspect I have some form of frontal lobe epilepsy as well from a totally unrelated event many years ago that injured my brain. I’m finally trying to get it diagnosed and treated and actually have my EEG next week. I’ll see if I can get one of these anti-epileptic meds prescribed.

 

@MadeleineHope, @haha ear go eeee, do you know what may be the difference between Ginger capsule supplements (Ginger root) vs. actual Ginger?

Will the Ginger supplements still have the same effect as actual Ginger for hyperacusis/noxacusis?

What do you think about NAC and Magnesium Glycinate for tinnitus and hyperacusis/noxacusis?

 

I'm not sure what the difference is, if I had to guess the supplement is just super concentrated Ginger. Personally, I found the raw Ginger to be extremely cheap and pretty helpful so I didn't bother with the supplements.

I tried NAC, it aggravated my asthma so I haven't tried it again. And I haven't tried Magnesium Glycinate, just Ionic Liquid Magnesium. It also aggravated my asthma haha.

 

How are you making the Ginger tea? Do you boil water and then tip it in the cup or do you boil water with the Ginger inside? If you have any leftovers, do you leave it outside and drink it later on during the day or night?

 

I've personally never tried Ginger capsules, just tea from fresh Ginger root. Maybe try the fresh Ginger tea first, see if it works for you, & then try Ginger capsules to see if you get the same effect?

I take Magnesium Bisglycinate every day for hearing & general health, but I can't say it does anything for my hyperacusis. As for NAC, I used to take that daily for a while towards the beginning of my journey, but I noticed it seemed to be giving me some chest pain so I stopped (& the pain went away). Now I have NAC on hand but only take it after an unexpected loud noise exposure.

Good luck!

Maddy

 

So I used to cut up raw Ginger into a pot of water and boil it for like 10 minutes, but honestly that was too much work lmao. I just ended up boiling the kettle, pouring the water into a glass, and just using a garlic crusher to crush the Ginger into the water. Left it for some time to steep and cool off and drank it. I was able to leave it out for a decent bit without it getting funky, you can definitely refrigerate it though just in case.

 

Mallotus oppositifolius seems to be another KCNQ2/3 opener.

 

I can't find this in a supplement from searching on Google. Do you have any other ideas?

 

Can you suggest a product that would be a good rosemary extract? I would like to experiment.

For example, I see this one, Swanson Rosemary Extract.

But in the interesting PubMed paper about rosemary that @Anima provided, the rosemary extract they prepare seems very different: