Fix for Sound Induced Pain — Stellate Ganglion Block?

I am sorry to hear that, and also glad that i seems to be OK. This spring I was 100% dependent on my mother for surviving and she was there for me every day.

Losing that person... I can't imagine. I was a shock when I read the first paragraph.

Take care and hope that you and your dad both get better.

 

Thank you, Johan.
He's back at the hospital now with some arrhythmic problems. Think the problem is they are pumping him full of drugs. It's crazy. He has never taken a drug in his life, now they put him on benzos, opiates, betablockers and a full cocktail of other stuff. Blood thinners, I get, but the rest is just overkill. Makes me so mad

Either way, I'm on an internal waiting list for SGNB. Don't know when it will be. I have to get better first.
Completely off benzos now. Just have to ride the hell-train for a while.

 

If this were an effective treatment it is weird that Myriam Westcott has not heard about this stellate ganglion block...

 

What do you mean? Of course she's heard of it. Myriam Westcott (and the doctor she worked with) is the only one who's performed the treatment so far, and only on one patient to this day.

 

I am really sorry to hear about your Dad, I wish him a speedy recovery, heart issues can be very scary. This would also put additional stress on you worrying about him, and as you know stress will exacerbate benzo withdrawal symptoms. I know you are now benzo free, I hope you do not have too many awful symptoms, it certainly has been the hardest thing I have ever been through in my life.

Are you still going to try Lenire or will you wait till things settle down for you?

 

Unfortunately I had to reinstate benzo because of the stress and panic of what happened to my father. Tried to go a "CT" a week ago, but that didn´t go well. What a fucking danger-drug benzo is. And you are so right, stress can really be a setback as well. I´ll probably be committed again next week as I´m a nervous wreck at the moment.

Thanks for caring Star

I´m unsure if I will make my appointment with Neuromod. Going on a flight right now seems impossible. Always had a fear of flying in the first place too so...

 

So sorry to hear this, but please do not cold turkey it is dangerous, you will put so much more stress on your CNS.

Benzos are dangerous drugs, tinnitus is bad enough on its own let alone with the added shit of withdrawal... takes things to a whole new level.

If you need support talk to me please, I will try and assist you, do not suffer alone.

You are going through difficult times, support is vital and I know how much you care about your father, I went through a similar experience years ago. Thank God I was not in withdrawal then.

Stay strong,
Good people here on this forum to offer you support, BenzoBuddies also full of advice from kind people.

 

@grate_biff
Have you done the SGB?
Hope you are doing well given the circumstances.

 

Going for SGB on the 27th.
Wish me luck...

 

I wish you all the luck in the world mate. Frankly, I'm even a tad jealous. If I may ask, how would you rate your severity? Do you have pain hyperacusis and/or loudness hyperacusis?

 

I rate my severity as extreme. My whole life evolves around protecting myself from sound.
I'm sure the withdrawal doesn´t make it any better either.
How about you?

 

Yep. Extreme as well. Haven't been outside in 6 months. Haven't heard my own voice in months either. Hence, I'm really hoping the SGB will help. How great would that be? A readily available procedure that is relatively simple fixing the hellish pain. I feel like contacting Westcott to inquire about her study on the matter. It was allegedly in preparation.

The withdrawal symptoms will subside eventually mate. It will get better.

 

Crossing fingers and toes that all goes well.

 

Hi everyone,

Had my SGB today and my severe noxacusis is definitely better. It´s not a slam dunk (no more pain) but it is better.
It´s early still, and I´m still in benzo withdrawal, but I´m feeling very relieved there is something that can help a severe case like me.
I´m going back in a few days/weeks to do it on my left side as well.

They had never done the procedure for my ailment before so this is new to them as well. Thankful that they did it based on my presentation of the Westcott article.

The procedure itself was fast and with minimal pain and side effects

 

Thank you very much for your review!

It's great news, indeed, that there is at least something to try for us severe cases. I might be giving it a go once I can leave the house. I'm really looking forward to the large scale study by Westcott as well.

 

So glad everything went well and that you're seeing some improvement. I think you're really brave for trying this. As far as we know, you're the second hyperacusis patient in the world who's tried it.

 

Sounds fantastic! Glad you are doing better. I hade not realised that the SGNB was side specific. But if the noxacusis was bilateral and you noted a one-sided improvement then its strong proof that it works.

 

I am so happy for you, withdrawal makes everything tougher, I hope you continue to make a speedy recovery.

You should shoot Westcott an email, she is a lovely lady, I am sure she would be happy to hear your story.

 

Congratulations friend.
Hope things keep getting better.

DL

 

Hi guys - just started to follow this thread. Can anyone tell me what this procedure is all about?

From a quick read it looks like these are some injections to numb the nerves on either side of the voice box. Do we know if this is a 1 injection and set for lifetime, or do we need to take these injections continually or for a certain time?

 

Hi

It requires several injections. You can find more links etc. among the posts in this thread. Grate_biff is possibly the second person to get it for Pain H as far as we know, so there is not a lot of data around.

You can read this article:
https://www.themonthly.com.au/issue/2018/may/1525096800/kate-cole-adams/when-sound-becomes-pain

 

Hey man, can we get some updates? How do you feel now?

 

How did you make the appointment to get this done? Did you just call them up and said "I would like this please"? How did you convince them to do it? Plus how is it going now with the pain?

 

I'm also really interested to hear how it went! I'm actually contemplating getting in touch with Myriam Westcott as she seems very sympathetic and keen to discuss her work. One thing I'm sort of unclear on is whether the SGB would be recommended for pain caused by acoustic shock disorder or hyperacusis/noxacusis stemming from something like long-term noise exposure. Is it suspected that these have different underlying etiologies?

The noxacusis has been flaring up pretty badly today - feeling pretty despondent about it all tbh. Knowing that this could be a potential viable treatment for the pain would be so reassuring - even just psychologically comforting if the pain were to get worse and become chronic.

 

@grate_biff This may have been written before but may I ask if you also have delayed pain like aching, burning after a few hours or maybe even few days after sound exposure?

 

Hi,

I´m sorry to say the effect was very short lived indeed.
I´m now pretty confident the SGNB didn´t do anything I´m afraid.

I asked for something to calm me down before the procedure. They gave me Fentanyl and it was probably what was dulling the pain for a few hours afterwards, but it came back very fast.

I´m really sorry to bring bad news, but it didn´t do anything for my noxacusis.

But I urge others to try it so we get more info.

Many ask how to go about it and I really don´t have a clue.

I got it at a pain clinic and was refered through my GP after showing him the Westcott article.

 

So a narcotic was effective, that’s interesting. Maybe you could get them to prescribe you that?

I might ask pain management if they can give me that if the stellate block doesn’t work. I definitely want to try stuff.

 

I'm especially intrigued by the use of botox since that has been used to manage neuropathic pain.

 

Did you have it done with Botox or just the standard stuff? Because the effect only lasted for a couple days with Myriam's patient with a regular SGB. The patient had 4 or 5 total done, each one lasting longer than the last. The Botox is what lasted for months.

 

Not only that but upon further research it’s not uncommon for it to last that short a period of time the first injection.

“With the first several injections pain relief may only be noted for several hours to several days. During this time, you may experience partial relief or full relief.”

https://discover-cpc.com/pain-management/patient-education-information/stellate-ganglion-blocks/