Repeated Modified Nerve Blocks and Auditory and Non-Auditory Nerve Stimulation

I don't think it will be permanent. This is complicated biology and more so when having tinnitus, but I don't think it will be permanent.

A finger is always placed at the level of the infraorbital foramen to avoid further cephalad advancement of the needle, and gentle pressure is used to prevent a hematoma formation.

Otherwise, there would be persistent paresthesia of the upper lip and prolonged numbness of the upper lip.

I would say that it's apparent that no difficult penetration of the foramen was made, which can result in nerve damage by compression in the narrow infraorbital canal, or needle penetration of the orbital floor and damage to the orbital contents - spike hopefully will resolve within days to three weeks.

The face on each side, has one area where there is a cluster of nerves - a larger goup of nerves and they are sensory. This group only interacts with the trigeminal and facial nerve when there's pain. If salivary glands in mouth are not dry or producing more saliva, then this would be another reason for spike to resolve. Over using of radiation can be a concern.

Needles are no longer being used in the secondary procedures that you had done. A nose tube is used, but use of a needle should be OK.

 

@Chinmoku, how are you doing? Thoughts are with you my friend.

 

Not well, not well at all. Don't want to trigger anyone, will post when I feel a little better hopefully.

 

Thank you Greg, God, I need something to hang on because the worsening has been catastrophic.

I can confirm that needles insertion has always been done carefully and skilfully, I never had paresthesia, numbness or any other symptom of nerve contact. Also, they told me these are particularly thin needles, among the thinnest injection needles ever.

There was no hematoma.

Radiation was only used at the first session and at the triple block. X-rays.

Lidocaine is at very low concentrations, 0.5% with volumes of 0.7 mg typically, except in the triple block where they used more.

They did use needles for the triple block. I had read that most clinics don't use needles anymore for some of those blocks, but they did. They have their patented needles and I think they wish to use those as much as possible. However, again, I felt no pain or nerve-damage related side effects.

The clinic recommends continuing more intensely when the symptoms get bad, a kind of doubling strategy. But I'm at the limit of what I can tolerate to stay alive and I don't know if it's wise to risk any more worsening, I'm really at my limit, and I may have already exceeded it.

I'm not a medical doctor but tried to use some logic. Could stopping the treatment halfway, against the recommendations, make the worsening permanent?

a) The needles didn't hit my hair cells, so there is no hair cell damage, as pointed out earlier.
b) If the needles did cause some minor nerve damage, more needles is not going to help anyway. Damage seems unlikely though, I would think more about sensitization through needles in innervated tissue.
c) If the lidocaine is causing problems, then more lidocaine will not help, but again this seems unlikely at the concentrations and volumes that have been administered.
d) Stopping the treatment early could stop the plastic changes the treatment is trying to achieve.

Point d) is the only reason I would see to continue the treatment, but it is a little vague, I need to discuss more in depth, but we know neuroplasticity is not that well understood. The approach of this clinic is mostly empirical, so I don't think there are clear answers to d). I am still discussing with the doctors, who remain very approachable and available to answer questions. I hope to survive this and post a much more detailed analysis later on, for people who wish to try the treatment.

Overall, I have two choices: keep going with the treatment, but this is impossible without something that brings down the tinnitus at least temporarily, or stop and hope for a reversion to pre-treatment levels, which were already pretty severe-catastrophic but not like this. I will have to decide shortly.

One more thing:

Can you tell me more about this, @Jerad? I wonder if the lidocaine is spiking me too. How did you get a permanent worsening? Was it injected near the ears or elsewhere? May I ask this? This seems unlikely in general but if it can happen I would like to know. I hope the effect is not permanent, how long ago has your lidocaine spike started?

 

Well, the question remains: Could this work for neurological tinnitus e.g., visual snow syndrome induced?

It doesn't have to do anything with the cochlear, instead primary with the brain e.g., thalamus, cortex.

 

Sorry to hear it, @Chinmoku. Don't worry about us - we are all here for you.

Did you notice progressive worsening that was maintained after each session?

 

Hearing damage isn't the only singular cause of tinnitus/tinnitus spikes, you know... People like @DocTors_94, me and @Chinmoku spike from insignificant noises, permanently. It doesn't make it any less horrendous...

I stand firmly on my opinion that this treatment will most not likely be effective for purely hearing loss tinnitus i.e. phantom cochlea, as that has little to anything to do with cranial nerves. I also don't think it will affect visual snow at all.

 

@Chinmoku, I’m sorry to hear about the worsening and this troubling time. I feel bad for you and I am praying for you.

My issue with lidocaine was last December and resulted from a topical cream that was put on two open ulcers on my leg. I believe it was either 1% or 2%, but it was not injected at all. They put it on the ulcers to perform debridement, which is a type of surgical procedure where they use a tool to just manually loosen-up the tissue to remove dead skin and so forth. They wiped-off most of the remaining lidocaine after, but I figure it got in my bloodstream because 8 hours later, I had a very pronounced spike. Nothing else had happened — no sound exposures to attribute the spike to. I did use Silvercel pads over the wounds that day, too, but I find it highly unlikely that they caused the issue. Those pads are just to keep the wound protected and sanitary. So I was confident it was the lidocaine. Obviously, can’t be 100% sure, but I was rattled enough by it that I wouldn’t feel comfortable using it again.

In the aftermath, the tinnitus was rough for that night and started to calm in the next few days, but it seemed to permanently alter my dental drill tone, and changed its characteristics from oscillating / on and off to more persistent, like always there. In the next month or so, it calmed more and became lower / more steady.

I have ultra severe hyperacusis and my auditory system is very touchy. I seem to spike easily or worsen easily. I thought that might be why my system is so fragile and volatile to begin with. I don’t know, though. There are so many unknowns with this condition and experiences vary from person to person.

 

Thank you for letting me know, and I'm sorry this happened to you.

In my case the lidocaine was injected in trigger points near the ear. Other people I talked to got it regularly injected from dentists or other specialists, one of them near the ear, but without spiking. God, I hope it's not that but it could be one of the consistent scenarios. As I was injected 6 times, it might take a while to wear off if it is indeed what triggered this worsening. Ototoxicity is usually manifested only when the lidocaine is directly injected in the hair cells and not systemically or topically, but as you say God knows what happens with this horrid condition. There is no rhyme or reason. Thank you for letting me know.

I would also be grateful to anyone else who was spiked by a lidocaine injection to let me know their experience.

 

They never made a single statement about visual snow. I don't think it's one of their objectives.

The treatment idea is to alter brain plasticity through an alternating of stimulation and sedation, thus confusing the brain. It's a sledgehammer tactic, but it seems to have worked on some people tinnitus. However, I never heard of it doing anything for visual snow. You can ask the clinic by emailing them, the address is in the paper in the very first post of this thread.

 

One thing that has been a literal lifesaver for me is to play an exact tone of my tinnitus on my phone, which will silence it for about 10-20 seconds. This gives me a temporary bit of sanity during bad spikes. It’s not much at all but maybe it can help you in some form. Just knowing I can switch some of it off at will makes it slightly more bearable for me. Keep in mind we’re all unique and your tinnitus may react differently to this treatment than mine does... obviously don’t do anything that makes you uncomfortable.

I have about 20 tinnitus tones just to give you a perspective of where I’m coming from. Definitely not a mild case. Unfortunately this was caused by the COVID-19 vaccine as a rare side effect.

Regarding the treatment, personally I’d wait and see if this is a temporary spike and if it will calm down in a week or so. You can always do more sessions down the line.

Best of luck to you, we are all rooting for you.

 

Yes, unfortunately. There was no zig-zagging in my case, just steady, continued elevation. Not sure why.

 

Thanks for this, I will try a few sound combinations. I had residual inhibition when this started but it has almost completely gone as the tinnitus got worse and worse and the sound saturated.

 

Praying for you.

I think you must go on and push through.

Be strong my friend.

I think this is our best chance to date.

 

@chinup, checking in on you. How are you doing?

 

Hey Chinmoku,

I can't fathom the level of your suffering, but maybe this can help you a little: I did a mindfulness-based stress reduction course recently and our teacher suggested that we should try to smile when going through difficult/stressful moments. It may make it a bit easier to deal with these situations. To me, it allows me to be with my problems with a bit more grace and acceptance, even if it doesn't change my situation. So for me it works. I had heard of this little trick before but it was good to be reminded.

Just a little suggestion that may ease your stress a bit.

 

SEOUL STIMULATION/NERVE BLOCKS TREATMENT – THIRD REPORT

Thank you everyone who asked about me. The situation is not good, to use a euphemism. Sadly, the elevation that came with each treatment session is still there and we are now trying to use a range of medications to being the tinnitus back to the pre-treatment level. I will have to improve in time for my flight. If things get desperate I'll try to get a lot of benzos and low dose quetiapine to tolerate the flight with protection while sleeping. I will go back to a life of torture worse than the one I had when I left for Seoul. I am the unluckiest patient ever: no one of their previous 700 patients had a situation like this, according to them. They mostly worsened temporarily but the spike would revert quickly, and the lidocaine for many would provide a temporary relief that would become permanent with a higher number of treatments.

There are a few things that might explain the worsening.

First of all Lidocaine interacts with Clonazepam amplifying tinnitus in some patients, there have been a number of FDA complaints on this, I think about 280. However, there is no clarity on Lidocaine dosages and sites that are triggering this, this is a collection of complaints that has not been analyzed statistically.

Second, my anatomy is narrow, so they couldn't inject a lot of Lidocaine. It can be that in my case the stimulation (needle insertion) overrode the sedation, so that I got stimulated excessively. We did try a sixth session with a much stronger block but even that didn't lower the tinnitus. So I tend to think that the needles insertion stimulated me excessively in general.

Third, I have to add that a friend asked his anesthesiologist about this treatment and the anesthesiologist's reaction was quite shocked. I don't know many details but this doctor thinks that the injection sites are dangerous, the Lidocaine will affect the dorsal cochlear nucleus and potentially excite the brain stem and worsen tinnitus. He was very alarmed by this treatment and recommended to stop immediately. However, at the same time, the clinic treated 700 patients and no-one responded so poorly or worsened permanently, according to them. So I'm probably their worst case. As I may already have said, an initial tinnitus matching test had put me in their worst 3-5 patients ever. Also, their special needles have a cap, if they hit a vessel the cap goes red, and they change needle position, so they make sure the Lidocaine should stay local. They explained this to me.

Anyway, my advice for cases that are really catastrophic is to be careful. If you want to try this treatment, have one or two sessions, but if the tinnitus is elevated and does not go down then stop immediately. This is what I should have done but I continued with the treatment instead. The doctors claim it could still go down after permanent elevation but for me it was an academic assumption: my tinnitus has been so bad after session 5 that I wanted to die every minute. I am going through hell, I hope we find a set of medications that can help me. The doctors are very cooperative and are willing to prescribe drugs, so we are trying a few drug combinations to see if this tinnitus can be contained or reduced. The anesthesiologist above mentioned that for the Lidocaine to dissipate their effect on nerve endings, DCN and possibly brainstem it might take three weeks after stopping the treatment. I'm on week two now. Fingers crossed, unfortunately this is no longer a therapy but has become damage control.

Greetings from Seoul.

Chinmoku

END THIRD REPORT

 

The results in this graph from eHealth, that I gave to @Chinmoku, are confirmed by a Clinical IV Advisory FDA post market study. This is why adverse events dropped after 2014 as doctors stopped injecting Lidocaine with those using Clonazepam.

Anesthesiologists also know that this has been analyzed statistically. Most that have an interaction have nerve impulse tinnitus and are male. Nerve impulse tinnitus can be caused or enhanced by chemicals and could be from an infection or cold.



In the far past, I mentioned one particular nerve drug for @Chinmoku to consider, but it wasn't available in England. He has just received this medication from another country - not where he is now. It's not known if the other drugs just prescribed will help, but increased tinnitus hopefully will recede and maybe also result in a lower baseline with use of this nerve medication.

 

Hello Chinmoku,

I'm really sorry to hear this. I really do think about you, and I wish you all the best. I'm sure you're going to make it, though noone deserves to be tested this way!

I don't know if this matters to you at all, but because of fates like yours, I'm reminded to enjoy every day that I can.

I hope you get better and find your way.

Cheers,
Stepe

Btw, the treatment really does have 1 star user reviews on this forum so far...

 

@Chinmoku, do you really believe you are one of the worst cases they have seen? Is it that their treatment is BS and they’re making excuses to come off looking like you’re an outlier?

 

All: listen to @Greg Sacramento, as usual an encyclopedic source of information and wisdom. Avoid my mistakes.

Thank you for the good vibes.

The clinic had 4 western patients.

1. @BrysonKingMe had improvement, but in his words not enough to justify the trip and expenses. Nothing comparable to the paper claim of 7/10 average reduction. Note that Bryson was on Clonazepam too but didn't have a reaction to Lidocaine.

2. @bikerbandito didn't get any improvement (but he didn't worsen either).

3. An helicopter pilot seems to have had a reduction of 50% at sessions 12-15. This was told to Bryson by the clinic, so we have no direct testimony. I agree with Bryson the clinic people are in good faith and nobody is lying. Soo-Ji is quintessentially kind, caring and compassionate.

4. There's finally me. I worsened big time but according to them I'm unique.

So 4 cases is statistically insignificant but there are also other issues, that were discussed earlier. Possible self-selection bias. Inconsistent statements between the paper and the clinic verbal/email communications etc.

Still very promising on paper, but one wonders.

 

Same.

You've been on my mind a lot lately @Chinmoku.

It was so courageous of you to make the journey you have, and to give this treatment a try; giving the rest of us an idea of it's efficacy in the process.

And then of course this happens. It's just typical.

When do we get a break? and how many f*ckers must we have murdered in a past life?

I can relate to this, because it's reminiscent of my own luck, and there are times it just seems the universe wants me to throw in the towel.

However if it helps at all, (like the others) nothing I've read via this thread so far regarding the treatment, suggests to me the elevation will be anything but temporary.

My intuition at the very start of this threads snowballing, was that this would end up being little more than a placebo, if anything. I wouldn't have predicted any real improvements, but likewise, no serious harm either (although I've made a note of what your friend's anaesthesiologist had to say).

My biggest concern at this point - were I in your position (as a fellow reactive sufferer) - would be the flight home's impact on the time, and lack of stimulus (that is to say, noise) needed for the elevation to subside.

Although, perhaps this isn't an issue for you, taking into account your ear defender and benzo plan?

Personally, if I could afford it, I'd want to hole-up in the quietest hotel in Seoul I could find, and make it my fort until I made my return to baseline. But of course we'd be talking about a lot of money, because as we both know, these come downs can take time. Plus there's the psychological impact of being away from home, much like @InNeedOfHelp outlined. And while I don't like to dwell on the psychological impact of our condition (as I believe it is given far too much credit for our troubles), it is most definitely going to be a factor in recovery when you're spiking and you're away from the place you feel most comfortable/relaxed.

Anyway, however you decide to play it, I believe you'll recover and re-join us here, back at square one (or should that be square six or something?).

Thank you btw, @Greg Sacramento, for your frequent updates and reassurances regarding @Chinmoku's current predicament. It has been much appreciated.

 

As usual you put it bluntly but it is a legitimate question.

I think we should have a dispassionate examination of this treatment.

On the pros side, a published study with exceptionally good results, refereed by two respected tinnitus researchers. A mechanism of action that at a superficial glance can make sense. The clinic has real doctors, and anesthesiologist and a neurosurgeon. This is no acupuncture. They have high dexterity in handling their proprietary needles and are very professional. They are also very kind and open to discussion. They expain everything they do. They can talk to you for hours without charging you.

On the cons side, inconsistent statements between the paper and the claims they make verbally/by emails; the self-selection bias of patients; our anecdotal data show that the results of the paper probably don't apply to a general tinnitus population; the anesthesiologist alarm I mentioned in my third report above; and I have never seen a database with the 700 patients. From what I understand, this is embedded in SK medical record system but would have to be extracted. So I am not sure how many systematic data they have besides the 52 in the retrospective study. However, they do have a ton of clinical experience with the method. Again on the cons side: me!!!

 

I am thinking there could also be cultural differences between Koreans and westerners that play a role. Maybe native visitors exaggerate how much the treatment has helped them because of politeness reasons? Just speculating.

 

We talked about this earlier in the thread. That is one of the things I suspected. But talking to a Korean friend, he told me it's more a old generation thing.

 

Thank you for writing this, @Damocles. Even in the middle of this hell I always appreciate your writing.

I'm in a silent flat so I'm trying to recover here but in 1 month my visa waiver will expire so will have to fly back one way or another. I hope to make it back.

 

When I travelled to Korea on business, I was told I could stay for 90 days without a visa - that was 3 years ago so not sure if it's changed. Alternately, you may well be able to apply for a visa to stay longer while there?

 

@Chinmoku, yesterday, I read all your thread postings and in one of them, you mentioned you done a lot of travel naming specific areas. These areas have a high rate of Lyme disease. With this travel, there is a high probability that Lyme or another infection caused tinnitus with nervous system reactions. If any of this is found and treated, your tinnitus may improve or resolve.

I once said that I don't understand facial - the facial nerve and branches when it comes to tinnitus. No one does with association to tinnitus as this is so complex.

Nerve blocks are for pain and some procedures are more risky than others. Nerve blocks for tinnitus may be the future, but more research is needed.

There is tinnitus association between Lyme, infection, cranial nerves, nervous system and Lateral Semicircular Canal. There is also association between Lidocaine with use of Clonazepam. All of this can connect as noted in some very interesting personal case studies.

The nerve medications that I mentioned to you are in the top one percent for safety - having almost no side effects. These meds should also help.

 

@Greg Sacramento, what is the nerve medication you’re referring to? Thanks.

 

I’m sorry to hear this has not worked out well, @Chinmoku. Have you thought about joining a clinical trial for DBS or XEN1101 (if you have MDD)? Both require multiple MRIs, though, as part of their processes. So it might not work for your situation. But there are a few clinical trials on the horizon.