Fix for Sound Induced Pain — Stellate Ganglion Block?

Exactly, just because it did not work very well initially doesn't mean you shouldn't try a couple more injections. If you have any sort of relief, even for a few hours, it likely DID work like it was supposed to. By the 5th injection, the patient in Myriam's paper had a month of relief.

 

The only thing is, he thinks it was the fentanyl. If I get it done, I’m just going to take anything tbh. Are you going to do it?

 

Does anyone know when Myriam Westcott is planning on publishing her paper detailing the SGB patient case study?

 

Just so you know, I shot her an email today with questions regarding the SGB, I’ll tell you if she says anything regarding when we can expect it.

 

Hey guys, so she didn’t really say much about the stellate ganglion block. But she confirmed that to date it’s still been tried on one patient, so personally, I think it’s up to us to take it into our own hands and just do it and see what happens. Here was her full excerpt relating to it.

“At this stage the stellate ganglion block using botox has only been tried on one patient. (A low dose Botox injection to the stellate ganglion at the C6 uncinate process with 25IU Xeomin in 0.25 ml normal saline). One approach that is less invasive than a stellate ganglion block is to find a holistic musculo-skeletal physiotherapist“

Also wanted to point out that she said one doesn’t necessarily need to have had acoustic shock to have TTTS. So I think this is an indication that even if you got your hyperacusis differently, if you have TTTS symptoms the block is worth a try.

 

Thanks for reporting back - this makes me wonder whether it would be worth trying with hyperacusis from prolonged noise exposure, sounds like it!

 

Yeah because that’s actually how I got it. Do you have TTTS like symptoms?

 

Yeah, I'm the same. Things have been getting better but I was in touch with Myriam Westcott and she confirmed that my symptoms fit with TTTS. The main symptoms I am still getting are intermittent pain that feels like warm liquid is being thrust in my ear. Also get referred pain which seems to match up with TTTS - e.g. I tend to experience tingling in my forehead, some sort of trigeminal nerve distribution.

 

Yeah same, really can’t stand it. I think it’s giving me migraines also now. Do you plan to get the block?

 

Things seem to be getting better and if I look back at, say, a month ago my symptoms have defo improved. It's just kinda coming and going which is a bit annoying. So it may not be necessary but I'm still curious about the procedure as even just knowing that there would be *something* that could be done would be comforting if the symptoms got worse or persisted long-term. I have days where I'm virtually asymptomatic and others where it flares up, it's just a t0ss-up. At least now with corona I can self-isolate w/o feeling bad about it lmao.

 

I’ve seen a few people on Twitter mention their ear ear thumps sometimes following loud noises or just randomly, and they don’t have Tinnitus or Hyperacusis (so that last part she mentioned is definitely true)

 

I do worry slightly about how I would go about getting the block should things don't improve and I want to try it out. Specifically because I'm not sure how the NHS would deal with it - I got referred to an ENT by my GP who (surprisingly) was familiar with tinnitus + hyperacusis but recommended sound therapy and/or CBT. My expectations were pretty low so at least I felt somewhat validated but when I emphasised that my pain is the most troublesome issue, the ENT was kinda dismissive and said it wasn't 'clinically relevant' as there's no surgery/meds for it.

So idk how it would work because I don't think a referral to an ENT would do any good on the NHS... I think you'd somehow have to persuade GP to refer to a neurologist or pain management of some sort but idk.

 

It shouldn’t be hard to get your GP to refer you to pain management. Mine gave me the slip like it was candy.

 

Someone else with pain hyperacusis got this done and they posted about it this past Monday. They gave their observation about after a week and said:

- reduction in pain: Before the shot, I would get weird feelings in my left ear cartilage area. Have not felt this since. My left ear can sometimes still get kind of tight inside but not the same frequency and intensity as before
- left side of face numbered feeling has been reduced a tiny bit but not gone

They say that if pain is your major complaint this might be worth looking into.

 

Great insight - where did this person post about their experience? That sounds quite encouraging especially as cumulative sessions really seemed to amp up the efficacy according to Myriam Westcott and her patient.

 

Do you have a link?

 

It’s a Facebook group, “Tinnitus and Hyperacusis Support”, it’s a closed group so I can’t link it but I promise you I quoted her word for word. You can join the group to see it.

 

It was posted on the facebook hyperacusis support & research page by Saleema Fazal

 

@serendipity1996 did you ever try this ?

 

@grate_biff did you ever get the real block?

 

My hyperacusis has improved a lot with the course of time so I didn't try this out!

 

@100Hz this thread may be useful for more information on the nerve blocker.

 

Thanks @serendipity1996 for pointing me to this thread.

Apologies if you've read this elsewhere on the forum but I'll post it here as well as it seems like this thread is discussing the same research I've been reading and might be better placed here.

Ive been researching the acoustic shock model paper and thanks to this thread can now a see bit more detail on where the information regarding the nerve blocks are being referenced from (Myriam Westcott).

I'd just like to add something to the discussion based on what I've read in that paper. I've seen a lot of reference to the stellate ganglion block and the one or two instances that it has been performed for acoustic shock noxacusis, and also a brief mention of blocking the trigeminal nerve.

In the acoustic shock model paper, it mentions that the mandibular nerve branch of the trigeminal nerve, specifically the red colored part below, innervates the facial muscles shown in the pics below. What I find significant is that these are the almost exact areas where I experience delayed facial pain and just wondered has there been any discussion on blocking the mandibular branch of the trigeminal nerve in particular? In addition, it also innervates the tensor tympani muscle, the middle ear mucosa, and the outer ear drum. It seems to cover the full area of delayed pain and seems significant.

 

My facial nerve pain was mostly concentrated in the forehead area (particularly on the left side and centre of my forehead). When this was triggered I also had a very uncomfortable sensation of 'tightness' in my forehead like someone was tying a rubber band round my head. This has gone away for the most part but one thing that did seem to trigger it, in addition to noise, was caffeine and stimulants. It's very bizarre and I wonder if it could be alleviated via nerve blockers.

 

@100Hz - you may be interested to see this. Hyperacusis Research posted this on their Facebook page a few days ago.

"The 2020 Tinnitus Research Initiative conference in Vancouver has been cancelled due to Covid, as have many important research conferences.

While the event was cancelled, an abstract book was published. On page 47 of the link below, you can see details of the symposium we were to present, titled "From clinical data to a model accounting for hyperacusis and associated symptoms."

In Arnaud Noreña's introduction, he describes the hypothesis (inspired by clinical data) that the tensor tympani muscle (TTM), the trigeminal nerve, and the trigeminal cervical complex may play a central role in generating hyperacusis and related ear symptoms. He further describes how TTM injury can lead to inflammation and ultimately result in pain.

Hyperacusis Research president Bryan Pollard summarizes characteristics of the onset and recurring symptoms of hyperacusis. The work is based on a combination of last year's brief online survey and our official Coordination of Rare Diseases at Sanford (CoRDS) registry questionnaire.

The abstract notes that pain is common among hyperacusis sufferers, as is with an increase in loudness sensation and tinnitus. Also, many sufferers experience setbacks that temporarily or permanently make their symptoms Therefore, setback prevention should be a top priority of clinical treatment programs."

https://tinnitusresearch.net/images/files/meetings/files2020/Abstract_Book_Vancouver_2020_Final.pdf

I think this is the same guy who co-authored that acoustic shock paper you posted?

 

My ear surgeon wants me to try the nerve blockade again, with Botox this time, before we cut my MEM. But my referral just got denied. Don´t know what happens now. I only know that my severe noxacusis is driving me more and more mentally unstable. I am on two different ADs and starting low dose Zyprexa now to fight depression and racing thoughts. This is what long term noxacusis will do to you. I´m a prisoner in my own body and mind. God help me!

 

Fight who denied the referral and maybe have your ear surgeon get in contact with them.

 

Yes, she is on it. She got very angry actually. Thanks.

 

That's disappointing news. Hope you have some luck with getting it sorted out.

 

Anyone else try this treatment or do more research on it? Seems like it is relatively low risk with a good doctor.