Ideas for Reducing Neuroinflammation to Help Hyperacusis

[MadeleineHope]

Hi everyone,

I believe that reducing neuroinflammation could go a long way to helping with hyperacusis symptoms. With this in mind, I thought I'd create a thread where we could discuss different ideas for reducing neuroinflammation & our experiences (if applicable).

Currently, I'm trying a highly absorbable form of curcumin called Longvida. I haven't noticed any notable benefits yet, though I haven't been on it for very long at all.

I have experimented with ginger (tea made from fresh root), & though I can't be sure, I do feel like this helped with my ear burning.

I'm interested in trying Boswellia, Pulsatilla, or high dose vitamin D (20,000-30,000 mg +) next. I read that a neurologist suggested 800 mg of Boswellia to someone with hyperacusis & it was apparently helpful. @ZFire also wrote he started improving around the same time he started taking this supplement. @Marin was helped by Pulsatilla, & apparently it's good for ear issues. Vitamin D is a steroid hormone which I've heard can replace Prednisone at high enough dosages.

Looking forward to hearing your thoughts & experiences!

 

[haha ear go eeee]

That finding about Vitamin D is very interesting! I wonder if taking it after a noise exposure would help like Prednisone sometimes does?

For me, I'm not sure if I'm seeing any improvements with ginger, however, I haven't been trying it every day at high amounts. I have noticed it really helps with my burning symptoms which I recently obtained.

I'm wondering if cutting out sugar, dairy, salt, and maybe caffeine might help? The same with incorporating more anti-inflammatory foods into my diet! I might slowly cut back on histamine foods as well.

 

[Juan]

I believe that reducing neuroinflammation could go a long way to helping with hyperacusis symptoms. With this in mind, I thought I'd create a thread where we could discuss different ideas for reducing neuroinflammation & our experiences (if applicable).

A toast with sliced raw garlic and prohitively expensive olive oil on top. Nasty breath but a potent way to reduce inflammation.

 

[Nick47]

I always look at the long termers on here + studies. There is only one good study that showed a benefit of ALA + multivitamin. No point taking them separately. Not seen any long termer improve with supplements. Some people take Magnesium glycinate to help relax.

The last thing you want is to limit foods you enjoy, however you should eat generally healthy.

You can get all the vitamins and minerals you need through food and sunshine. If you want, take a multivitamin.

I know it's bleak but it's the truth.

 

[momus]

There are health issues associated w/ large doses of Vitamin D. Make sure you keep an eye on your blood levels, and if you think you may have kidney problems it wouldn't be a good idea.

I try and eat anti-inflammatory foods, and love the taste of them all. So I haven't had to change my diet much, and what has been changed tastes better anyway. Garlic, no butter (just olive oil), keep salt down and sugar to a minimum, tea, Salmon, sweet potatoes, Greek yogurt, arugula, ginger, almonds, walnuts, broccoli, tomatoes etc. NO fried foods.

You could make a ton of great meals w/ just these. I love hot/spicy foods, so plenty of onions, jalapeno peppers, Louisianan Hot Sauce, all that. If it's inflammatory, I won't eat it. Rice is inflammatory, but black rice is good. Potatoes are a problem unless they're sweet potatoes.

Does any of this help w/ my tinnitus? I have no idea, but I almost never, ever get colds or infections. Let's put it this way, there are no downside to eating an anti-inflammatory diet.

 

[Nick47]

There are health issues associated w/ large doses of Vitamin D. Make sure you keep an eye on your blood levels, and if you think you may have kidney problems it wouldn't be a good idea.

I think this is important. There are lots of social media influencers pushing certain supplements.

When buying any supplement, no matter how good the advertising or brand image is, there are key points to remember:

1) Supplements are not regulated and therefore can contain 'anything' in any amount.
2) The molecules are often synthetic copies in order to avoid oxidation and degradation. For instance vitamin C is degraded within seconds. So they are NOT NATURAL.
3) They often contain different amounts to what is stated.
4) Vitamins, minerals, polyphenols etc usually are not very bioavailable on their own. What this means is they need the presence of other molecules to be absorbed. This is why food is better.
5) Toxication occurs in some, especially fat soluble molecules like vitamin D, some B vitamins and many others.

If you see a study showing benefit in tinnitus or hyperacusis, then look to replicate it by all means, but follow the protocol:

1) Purchase the supplements from the company that supplied the study centre.
2) Take the same dosage.
3) Follow the duration.

I hope this helps. Unfortunately big pharma has a rival and it's big supplements, only the latter is unregulated and has no quality control.

There's a reason that there are almost no threads in the Research News section following development or trials of supplements.

 

[ECP]

With regards to homeopathic remedies, there are many, besides Pulsatilla, that could be used for ear issues. Kali Carbonicum, Cinchona, Kali Muriaticum, and Cimicifuga Racemora are just a few that might be appropriate for you, depending on your particular combination of ear-related symptoms. There are many websites on homeopathy that can help you identify the remedies that may suit you best.

Having said that, I want to caution against putting too much faith in homeopathic remedies, as the evidence for them isn't very strong and it can take some trial and error to figure out which remedy or remedies will work -- or if any of them will work at all.

Last autumn, when I came down with tinnitus & hyperacusis, I tried about a half dozen homeopathic remedies, as well as the usual array of supplements, such as Curcumin, NAC, vitamin B complex, Rhodiola, Lion's Mane mushroom powder, and Ginger. I also found out through bloodwork that I was low in iron and vitamin D, so I started taking supplements of those. I also had tons of acupuncture, and my practitioner custom-prescribed some Chinese herb formulas for my symptoms. And then at the start of July, I started taking Cymbalta.

Diet-wise, I've always had plenty of non-inflammatory foods in my meals, so I didn't feel the need to add more of them.

Ten and a half months later, my hyperacusis is 90% better, but the tinnitus is still with me. Because I took so many herbs and supplements at the same time, I can't look back and say for sure which ones were the most helpful. All I can say is that the healing of the hyperacusis was incredibly slow and non-linear with many setbacks along the way. If fact, it was really only in the last two months that the hyperacusis got significantly better, jumping from about 30% better in mid-May to 90% better as of now. The first eight months were unspeakably horrible, and I honestly don't know what happened between May and July that made things so much better all of a sudden. I'm just glad it happened (and I hope I haven't jinxed anything by typing this).

Getting back to the subject of homeopathic remedies, my gut feeling is that they didn't work for me at all, no matter which ones I experimented with. HOWEVER, I took them shortly after the onset of my ear problems, and it's possible that the injury was just too severe at the time to be helped significantly by any homeopathic remedy, no matter what it was. For all I know, if I had waited until late spring or early summer to try the homeopathic remedies (a time when I was already beginning to heal more noticeably), they might have been more effective. And even if they weren't more effective, I might have attributed the healing to the homeopathic remedies anyway, just because they would have been something new to my regimen at that time.

Looking back, whatever healing I experienced was probably caused by the cumulative effect of everything in my regimen, and I will never know what to credit the most.

In short, it's hard to know what helps with tinnitus and hyperacusis. I think a lot of people like myself want to try a million things all at once out of sheer desperation -- but of course that makes it harder to know at the end of the day which things are working and which are not. As @Nick47 said, if you want to test a supplement that you've heard good things about, it's probably best to follow the research protocol very strictly so that there aren't any confounding variables. But that requires a lot of patience. It may also require abstaining from all other meds and supplements, which few of us are willing to do when we are in so much pain and distress.

Good luck to you. I really hope you can figure out a combination of things to take that help your symptoms. I'm still working on my regimen to see what else I could add and whether there are things I can cut back on.

 

[MadeleineHope]

That finding about Vitamin D is very interesting! I wonder if taking it after a noise exposure would help like Prednisone sometimes does?

For me, I'm not sure if I'm seeing any improvements with ginger, however, I haven't been trying it every day at high amounts. I have noticed it really helps with my burning symptoms which I recently obtained.

I'm wondering if cutting out sugar, dairy, salt, and maybe caffeine might help? The same with incorporating more anti-inflammatory foods into my diet! I might slowly cut back on histamine foods as well.

That's a good question! I'm not sure whether there would need to be a build-up period for the vitamin D or not.

But I've learned that there are lots of people out there who have replaced long-term use of steroids with really high doses of vitamin D (much greater than 30,000 IU) & seen great success. If you'd like to read more about this, you can look into the Coimbra protocol. But this protocol is used for people with certain conditions, so I don't think I would start out that high!

There are health issues associated w/ large doses of Vitamin D. Make sure you keep an eye on your blood levels, and if you think you may have kidney problems it wouldn't be a good idea.

Yes, you would definitely want to take high doses of vitamin D under a doctor's supervision & have your calcium levels checked regularly. That said, there is a study that was done where participants with autoimmune diseases took very high doses of vitamin D for up to 3.5 years & this was found to be safe. Of course, these are participants with autoimmune disease, so the results may not carry over to those without one, so it would still be important to monitor those calcium levels. The participants also adhered to a low calcium diet & consumed at least 2.5L of fluids per day.

I think this is important. There are lots of social media influencers pushing certain supplements.

When buying any supplement, no matter how good the advertising or brand image is, there are key points to remember:

1) Supplements are not regulated and therefore can contain 'anything' in any amount.
2) The molecules are often synthetic copies in order to avoid oxidation and degradation. For instance vitamin C is degraded within seconds. So they are NOT NATURAL.
3) They often contain different amounts to what is stated.
4) Vitamins, minerals, polyphenols etc usually are not very bioavailable on their own. What this means is they need the presence of other molecules to be absorbed. This is why food is better.
5) Toxication occurs in some, especially fat soluble molecules like vitamin D, some B vitamins and many others.

If you see a study showing benefit in tinnitus or hyperacusis, then look to replicate it by all means, but follow the protocol:

1) Purchase the supplements from the company that supplied the study centre.
2) Take the same dosage.
3) Follow the duration.

I hope this helps. Unfortunately big pharma has a rival and it's big supplements, only the latter is unregulated and has no quality control.

There's a reason that there are almost no threads in the Research News section following development or trials of supplements.

Thanks for highlighting these points! I've come across a lot of the same information. The lack of regulation & quality control when it comes to supplements is abysmal & really unfortunate, especially since I do believe that quality supplements can have a lot to offer & often with a more favourable side effect profile than medical drugs.

On the other hand, I wouldn't be too trusting of big pharma either. Clinical trials of drugs are usually funded & conducted by big pharma itself. So lots of opportunity to fake results & not disclose harmful side effects.

I think the dominance of big pharma is also a good part of why we don't see more studies involving supplements.

 

[Nick47]

I believe that reducing neuroinflammation could go a long way to helping with hyperacusis symptoms

I think the most important thing to address is this belief. What evidence or reason led you to look at this as a cause of hyperacusis? Hyperacusis is a condition with little understanding and is loosely believed to be as a result of 'central gain' following a shift in hearing threshold. The only evidence to date is that pain hyperacusis can be attributed to auditory type 2 neurons in some cases.

I just thought it may be beneficial to look at your opening hypothesis.

On the vitamin D3 debate, it should be taken with K2, if larger doses are taken. This prevents excess serum calcium levels.

 

[MadeleineHope]

I think the most important thing to address is this belief. What evidence or reason led you to look at this as a cause of hyperacusis? Hyperacusis is a condition with little understanding and is loosely believed to be as a result of 'central gain' following a shift in hearing threshold. The only evidence to date is that pain hyperacusis can be attributed to auditory type 2 neurons in some cases.

I just thought it may be beneficial to look at your opening hypothesis.

On the vitamin D3 debate, it should be taken with K2, if larger doses are taken. This prevents excess serum calcium levels.

Yes, good point - it's always important to take an adequate amount of K2 as well when supplementing with vitamin D.

Re: inflammation, have you read the Norena paper? Inflammation is pretty much the process that is believed to lead to hyperacusis symptoms. Norena actually does a nice job of including the potential involvement of the type II afferents as well.

Here's the link to the paper:

An Integrative Model Accounting for the Symptom Cluster Triggered After an Acoustic Shock

Maddy

 

[Nick47]

have you read the Norena paper?

Yes, with interest. He seems at the forefront of some of our symptoms. He proposes the immune response leads to inflammation, which certainly has some evidence. There is a trial on TNF-1 blockers ongoing.

 

[haha ear go eeee]

Yes, with interest. He seems at the forefront of some of our symptoms. He proposes the immune response leads to inflammation, which certainly has some evidence. There is a trial on TNF-1 blockers ongoing.

Oh interesting! Who's conducting the trial?

 

[StoneInFocus]

Re: inflammation, have you read the Norena paper? Inflammation is pretty much the process that is believed to lead to hyperacusis symptoms. Norena actually does a nice job of including the potential involvement of the type II afferents as well.

I'm curious to hear how you think neuroinflammation in particular contributes to hyperacusis.

 

[MadeleineHope]

Yes, with interest. He seems at the forefront of some of our symptoms. He proposes the immune response leads to inflammation, which certainly has some evidence. There is a trial on TNF-1 blockers ongoing.

I too am interested in learning more information about this.

I'm curious to hear how you think neuroinflammation in particular contributes to hyperacusis.

Good catch - should have just written inflammation as I was thinking mostly of the Norena paper (& also Megan Wood's latest research). That said, neuroinflammation is also thought to cause hyperacusis in some cases; I'm thinking particularly of cases where the facial nerve becomes inflamed (e.g., Bell's Palsy or infection such as Lyme disease).

Cheers!
Maddy

 

[Josh59]

Speaking of neuroinflammation, Professor Sven Vanneste will be talking about it at the AFREPA conference in Toulouse (FRANCE) in September.

Topic: tinnitus and neuroinflammation.

It will be interesting to find out more after this conference.

 

[MadeleineHope]

With regards to homeopathic remedies, there are many, besides Pulsatilla, that could be used for ear issues. Kali Carbonicum, Cinchona, Kali Muriaticum, and Cimicifuga Racemora are just a few that might be appropriate for you, depending on your particular combination of ear-related symptoms. There are many websites on homeopathy that can help you identify the remedies that may suit you best.

Having said that, I want to caution against putting too much faith in homeopathic remedies, as the evidence for them isn't very strong and it can take some trial and error to figure out which remedy or remedies will work -- or if any of them will work at all.

Last autumn, when I came down with tinnitus & hyperacusis, I tried about a half dozen homeopathic remedies, as well as the usual array of supplements, such as Curcumin, NAC, vitamin B complex, Rhodiola, Lion's Mane mushroom powder, and Ginger. I also found out through bloodwork that I was low in iron and vitamin D, so I started taking supplements of those. I also had tons of acupuncture, and my practitioner custom-prescribed some Chinese herb formulas for my symptoms. And then at the start of July, I started taking Cymbalta.

Diet-wise, I've always had plenty of non-inflammatory foods in my meals, so I didn't feel the need to add more of them.

Ten and a half months later, my hyperacusis is 90% better, but the tinnitus is still with me. Because I took so many herbs and supplements at the same time, I can't look back and say for sure which ones were the most helpful. All I can say is that the healing of the hyperacusis was incredibly slow and non-linear with many setbacks along the way. If fact, it was really only in the last two months that the hyperacusis got significantly better, jumping from about 30% better in mid-May to 90% better as of now. The first eight months were unspeakably horrible, and I honestly don't know what happened between May and July that made things so much better all of a sudden. I'm just glad it happened (and I hope I haven't jinxed anything by typing this).

Getting back to the subject of homeopathic remedies, my gut feeling is that they didn't work for me at all, no matter which ones I experimented with. HOWEVER, I took them shortly after the onset of my ear problems, and it's possible that the injury was just too severe at the time to be helped significantly by any homeopathic remedy, no matter what it was. For all I know, if I had waited until late spring or early summer to try the homeopathic remedies (a time when I was already beginning to heal more noticeably), they might have been more effective. And even if they weren't more effective, I might have attributed the healing to the homeopathic remedies anyway, just because they would have been something new to my regimen at that time.

Looking back, whatever healing I experienced was probably caused by the cumulative effect of everything in my regimen, and I will never know what to credit the most.

In short, it's hard to know what helps with tinnitus and hyperacusis. I think a lot of people like myself want to try a million things all at once out of sheer desperation -- but of course that makes it harder to know at the end of the day which things are working and which are not. As @Nick47 said, if you want to test a supplement that you've heard good things about, it's probably best to follow the research protocol very strictly so that there aren't any confounding variables. But that requires a lot of patience. It may also require abstaining from all other meds and supplements, which few of us are willing to do when we are in so much pain and distress.

Good luck to you. I really hope you can figure out a combination of things to take that help your symptoms. I'm still working on my regimen to see what else I could add and whether there are things I can cut back on.

You mentioned that you started taking Cymbalta at the beginning of July... do you think it's this that may have helped? I know it's used for chronic pain conditions...

Cheers,
Maddy

 

[ECP]

You mentioned that you started taking Cymbalta at the beginning of July... do you think it's this that may have helped? I know it's used for chronic pain conditions...

Cheers,
Maddy

Yes, the Cymbalta helped greatly with the depression, even after just one dose. I think it also may have helped somewhat with the pain in my right ear and the clenching headache-like sensation on the right side of my head, although if I can be honest, by the time I started taking Cymbalta, the pain had already subsided quite a bit and it was no longer a primary concern. My main motivation for taking Cymbalta was for the depression, which was debilitating. But yeah, I think if I had started taking Cymbalta earlier instead of holding out for as long as I did, it probably would've helped reduce the pain too.

I'm still taking the Cymbalta and I plan to stay on it for the remainder of the summer and very likely autumn too. Not sure when I'll start to taper off. I definitely don't want to be on it forever, even though I am told it's very safe to take it for extended periods of time.

 

[StoneInFocus]

You mentioned that you started taking Cymbalta at the beginning of July... do you think it's this that may have helped? I know it's used for chronic pain conditions...

Cheers,
Maddy

It's interesting that "the clinical efficacy of duloxetine [Cymbalta] for pain associated with diabetic peripheral neuropathy has been demonstrated in three double-blind, placebo-controlled, randomized studies. These studies (n = 1139) were 12-week fixed-dose trials that enrolled Type I or Type II diabetics with painful diabetic neuropathy for greater than 6 months duration with at least moderate 24-hour pain severity... Diabetic neuropathy is a symmetrical peripheral polyneuropathy that results from nerve damage."

You know what else helped patients with diabetic peripheral neuropathy?

"ivabradine may be efficacious at higher doses, particularly in patients with diabetic neuropathic pain. Importantly, participants reported no adverse effects. These data suggest that ivabradine, a peripherally restricted drug (devoid of central nervous system side effects), is well tolerated in patients with chronic neuropathic pain. Ivabradine is now off-patent, and its analgesic potential merits further investigation in clinical trials."

We know from a recent study that Ivrabradine can inhibit perceived tinnitus in guinea pigs. It is hypothesized that this inhibition is due to a reduced excitability of type II SGNs.

Even though noxacusis might not be nerve damage related, could it be that one of the mechanisms behind it is an increased amplitude of a HCN2 induced inward cation current?

It would be super interesting to find out if and to what extent Ivabradine could help noxacusis sufferers. The only thing I am still puzzled by is how Ivabradine is supposed to cross the blood labyrinth barrier.