LDN (Low-Dose Naltrexone) Experiences and Effect on Tinnitus, Anyone?

I've also got a script for Low-Dowe Naltrexone now.

I was having better days before Quercetin and Bromelain, ironically some of the best so far since my tinnitus got much worse (not even close to mild though). I was taking a fair amount of Calcium to deal with potential ototoxicity but maybe it wasn't enough. It's been fairly bad each morning with the pulsatile tinnitus being stronger.

Maybe a diuretic plus LDN will make the difference one morning.

 

Did the Quercetin and Bromelain worsen your tinnitus? Something really strange is going on. I’ve been on it for about 5 days and while the feeling of fluid in my ear is less (when I swallow) I feel that I have more tension in my temples, jaw and eardrums (if that makes sense). The sensitivity is up and I have gone from having almost no hyperacusis to mild to moderate again. I can only imagine this all being due to the Quercetin/Bromelain. Also, my tinnitus is slightly spiked but it varies throughout the day.

 

Yes. I have today ceased Quercetin and Bromelain. @Tinker Bell was kind enough to provide a paper on ototoxicity. I was titrating up and I definitely seem to be worse now than I was in the beginning. Not the worst I've ever been so hopefully it's a temporary spike. I was taking Calcium too but apparently not enough to prevent hair cell damage. I also scored slightly lower on hearing testing (3 dB) which has now returned.

 

I haven't been able to find anything that suggests Quercetin or Bromelain is ototoxic. Actually, I have found the contrary. Do you mind to share the info?

 

This probably needs it's own thread if we're gonna talk Quercetin but....

Natural Compounds as Occult Ototoxins? Ginkgo biloba Flavonoids Moderately Damage Lateral Line Hair Cells

What bothers me other than this being about zebrafish is that the authors propose no mechanism for radical formation or ototoxic effects. It's known as a radical scavenger.....so if anything you'd think it'd help.
So why?
Now....being organic radicals it is entirely not out of the realm of possible that the hydroxyl and carbonyl would react with themselves in the event of a radical capture through the conjugation...if it broke the right bond it "could" turn into a salicylate persay. The hydroxyl next to the carbonyl/double bond would be highly reactive.
But on the phenyl groups, any radical capture making this ototoxic doesn't make sense, it would just hold it until the next hydroxyl radical came along and make water.

Of course that's it's own research paper, but the fact the authors don't even try suggesting bothers me. Need the full paper to find out but I doubt there's little more than "it seems ototoxic".

 

How long did it take you to habituate?

 

@Zugzug, any updates on LDN?

 

The LDN basically cured my bothersome tinnitus, but before that, I’d say I wasn’t habituated.

I was ok with things, but still not habituated.

I’m cured now I’d say.

 

Sorry for my late reply, I’ve had a busy time having a baby!

I stayed on the diuretics. I think the diuretics cured the Hydrops.

I had a tiny recurrence at the end of my pregnancy, but all is well now, 2 weeks after the birth. I’ve cut the Moduretic in half so I can breastfeed and all remains well at the moment. Touch wood.

Still on the LDN. I had a couple of spikes during the pregnancy, but all is normal and quiet now.

To be honest, I couldn’t care less about the tinnitus now, even when it was loud while I was pregnant, it bothered me not a bit.

 

Hi and sorry for my late reply. No, I haven’t stopped the LDN.

I have given birth just 2 weeks ago, and at times during the pregnancy my tinnitus spiked.

I’d blame hormones and inflammation and the LDN couldn’t help, even when I increased the dose. Things are now back to normal and the only noise bothering me at night is my daughter screaming! Lol.

 

Great! Congratulations and glad you have been able to move on with your life. This is really a great success story.

May I ask: do you think the diuretics are maybe helping more than the LDN? Do you plan to stay on them indefinitely?

 

Congratulations on the birth of your daughter! Thank you for the reply, so glad you are doing well!

Twa

 

I've got hyped with the positive reports shared here! Thank you for that!

Has anyone here tried LDN while using SSRIs and/or benzos?

I use SSRIs, Valium and Lyrica, I wonder if it's safe for me to take it or if will hinder any therapeutic effect from any med...

Any thought on this?

 

@Matchbox, did you end up taking LDN? Is it doing anything for your tinnitus?

 

@Lukee, those who got over CFS/ME - did they attribute that to the LDN, or was there something else that did it for them? Any chance of enquiring?

 

LDN can be a miracle drug for some people with CFS but it’s only a small percentage that it works really well for. I would say a large portion respond to it but don’t get full remission.

 

And your friends who had ME/CFS? How did they get over it?

 

I'm still taking LDN - will keep track and report.

 

For how long have you been taking it @Ben Winders? Any effects so far?

 

Hi @Uklawyer -- I feel I've recovered about 75% from ME/CFS after having been mostly bedbound for 20-30 years (approx. 20 hrs/day in bed). I did many things over the years to improve things for myself, and was able to go from about 4% functionality at one point (took an hour to make my way from my bed to the bathroom in the morning), to around 20-25% functionality for many years.

There were four things that I feel were absolutely critical for me in my journey.

1) I began taking low-dose bioidentical cortisol;

2) I had all my amalgams and metal crowns removed from my mouth;

3) I attempted to treat a chronic Lyme situation with a variety of modalites, including long-term HBOT, and

4) I focused intently on addressing structural issues, and availed myself of just about every conceivable approach I came across.

Many of these approaches helped considerably, especially Orthogonal Chiropractic, and a specialized technique called AtlasProfilax. Here's a link to 3 video testimonials on how AtlasProfilax helped some people's tinnitus. -- I'm also a big believer in a technique called Nasal Specific, which has also been reported to help reduce or even eliminate tinnitus. But what I feel really got me over the hump (from 20% functionality to ~75% functionality), was doing a couple of simple thoracic extension exercises I ran across on YouTube.

This :37 second video shows two ways a rolled up towel or foam piece can be used for the upper thoracic area.

Thoracic Towel Stretch

Below is a link to a 5-min. video which goes into more detail on how to use a towel or foam piece to loosen up the upper back:

The Simplest and Most Effective Exercise For Thoracic Extension

I discovered a really good complimentary exercise called the pelvis stabilization techniques described in this 5-Min. video (Natural Pelvis Reset). It really helped my lower back a LOT, and most likely helped my neck area as much as the towel exercise (I use foam instead of a towel). I think these two techniques work really well together.

So why did I improve so much in just a week or two? I can't say for sure, but my top two hypotheses are that by doing the thoracic extension exercises, I was able to get a lot more nerve energy to the top of my GI tract, which is where the bulk of the body's immune system lies. I suspect I had a long-standing chronic infection of some kind that my body couldn't handle, and when I got more energy to my immune system, it was able to dramatically reduce that chronic infection.

The other hypothesis is that I changed things structurally in a fundamental way, and got a lot more nerve energy running up and down my spine, and greatly improved the neurological functioning of my body, helping it in a number of ways. It could also be a combination of the two. I must say however, that even though I feel this is what got me over the hump, I think it's unlikely I would have gotten so much immediate benefit had I not done a very large number of other things over the years that prepared my body to take full advantage of the new stretching exercises that worked so well for me. -- I read of another many with chronic ME/CFS who claimed to have fully recovered just by doing yoga. Could be the same or similar dynamics as my situation.

Just to mention, most people who have ME/CFS never recover. They may have upcycles for a while, or even remission, but it's pretty rare for somebody to recover from ME/CFS, especially if it's long-term. I feel extraordinarily fortunate that I was able to make such significant improvement after so many decades of being mostly bedbound.

 

Hi @Lane - many thanks for the considered response.

I am sorry to hear about what you have been through with ME/CFS (and now understand why you have referred to this and to related conditions on a number of occasions throughout your posts on here). 4% functionality sounds horrendous. I did a mitochondrial test once which showed that I was producing energy at at 30% of the average person. So I considered myself a mild case of ME/CFS - some time after glandular fever, which is what triggered mine when I was at university. Luckily, I always managed to struggle through, taking an extra year here or there to finish studies. Work has been pretty hard going, but I would say that I was probably at around 60 - 70% (mostly brain functionality and basic physical stuff) and managing with work, but the worsening of tinnitus last year killed it for me. Concentration, sleep, increased anxiety, depression, needing benzos. It's cruel. So I am not working, but trying to find a way through the psychological side.

There are theories around chronic fatigue and other things like fibromyalgia, MCAS electro-magnetic sensitivity, that something triggers the immune system to react to protect us, but that it then gets stuck in a state of hypervigilance, which creates a negative feedback loop, further stimulating the immune system and the sympathetic nervous system. Some think that it is the Amygdala and Insula where these various threats to our system are learned and processed - and that these areas of the limbic system need to be worked on (via the neocortex I believe at a conscious level) in order to "reset" our systems not to overreact and keep us in this state of hypervigilance and over-reactivity to perceived threats.

There seems to be overlap with tinnitus in this respect (all the talk about tinnitus retraining therapy and teaching ourselves to recategorise the noise as not being threatening in order to relax the limbic system and push the noise to the back of our minds, moving towards habituation).

Essentially, we are talking about neuroplasticity - creating new pathways that cause us to experience things in new ways - and changing the physiology of the implicated structures themselves.

Your issue sounded, in part, to be related to your spinal column - and I know people have had ME/CFS only to find real issues with vertebrae alignment - Is it Greg on here that mentions the C1 and C2 frequently? I saw an osteopath who said I had myofascial pain (I think it was), but I don't think that manipulations did much for the tinnitus. I suspect mine initially came from stress and then, perhaps, was worsened by medication, but am unsure.

We have hijacked this thread enough. But LDN has been used for ME/CFS, so it would be interesting to see if it could work for tinnitus too. Tinnitus is also a known symptom of ME/CFS, so for a subgroup of tinnitus sufferers at least, there must be some link (nervous system n'all).

I am looking into the Gupta Program, which is about brain retraining/neuroplasticity. Perhaps I should consider posting a thread on here about it...

 

How did you get on with trialing LDN?

 

I'm quite concerned about the potential for Quercetin to be ototoxic.

My naturopath had me on Quercetin for a while now. Tinnitus was a non issue for several months.

Until, I received a dose IV Cefazolin and a week's worth of oral Cephalexin about a month ago.

Now my tinnitus is problematic again.

I've dug around and haven't found anything particularly concerning about cephalosporins.

I have had similar relapses however, and never really was able to pin it on anything in particular.

Any suggestions?

 

@DebInAustralia, did your tinnitus become a non-issue because of the Quercetin? Or was it a non-issue already?

 

Did you get around to trying LDN?

Can you try another TNF-alpha inhibitor?

 

What dose of LDN are you taking?

Is it helping?

 

1x 5mg once a day.

For a while I thought it reduced the volume a bit, but it seems to be back to baseline now (loud humming).

 

Hi Ben,

I hope you are doing well. I am a fellow tinnitus sufferer and live in the Netherlands.
I recently had a call with Dr. Ridder, impressive and genuine guy. I saw that you have been there. How was your experience? How did it help you overall? Did it help to reduce yor tinnitus?

Kind regards,
transient_18

 

The issue with Naltrexone is the half-life. It's very difficult to go on/off to be able to tell distinct differences apart from placebo (less a miraculous wake up to silence).

Is the idea that it inhibits TNF-A? What part of the immune system is it inhibiting?
This might not be a good thing if our issues are viral, FYI.

 

Sorry for delay.

I'm not entirely sure.

I have read Quercetin can modulate KV7 channels.

But...

I've also read it may be ototoxic.