Fix for Sound Induced Pain — Stellate Ganglion Block?

So, what I thought was gonna be a SGNB procedure turned out to be something else. The doctor only communicated through my dad so there was some miscommunication there.

Instead he gave me, at his house, 400ml of lidocaine intravenously. His thinking was that this would affect my voltage gated sodium channels and that this worked for up to 30% of chronic pain sufferers.

Through administration I felt really dizzy and numb all over my body. I could feel all the senses numbing, thus I had some immediate relief from my Noxacusis (and tinnitus) and bursted into tears.

Sadly, it was very short lived, indeed. Just about an hour later my Noxacusis was actually much worse and still is as I am writing. My blood pressure and heart rate skyrocketed because of the dizziness and triggered my everlasting benzo withdrawal. I´m not gonna do that again.

I´m still scheduled for SGNB in the fall, but you never know with these doctors :banghead:
That's scary... Thank goodness you're ok.
Doctors? Good luck with the SGB.
Are you off the Benzos or still tapering down?
 
Are you off the Benzos or still tapering down?
I´m tapering, but it´s really hard. Feels like an endless nervous breakdown.
I thought I was tapering off the last 4-5 years, but did quite the opposite. This drug will fuck with your mind.

Problem is it works like a charm for tinnitus and hyperacusis. Makes it sooo difficult.
 
I´m tapering, but it´s really hard. Feels like an endless nervous breakdown.
I thought I was tapering off the last 4-5 years, but did quite the opposite. This drug will fuck with your mind.

Problem is it works like a charm for tinnitus and hyperacusis. Makes it sooo difficult.
Understood... and sympathize.

Maybe the Neuromod will help, perhaps marijuana in tea or oil.
It's really up to you.

Continue on or keep tapering and get off... with an hour of vigorous exercise a a day and hot baths. If you get off... you can always use them once in a blue moon for relief.

I don't know honestly.
Some people are cool with Benzos for years, decades.
They work for me but ironically also ramp up my tinnitus after a few days. I also have to take huge amounts by average medical standards.

I'll use Valium for two days or three once a month, or five weeks for an escape.

I'd like to push it to six weeks and perhaps never again.

I pass no judgment.

Hyperacusis and tinnitus are killers and Benzos calm the hyperacusis down for me quickly.

Let's both try our best and stay strong my friend.
Daniel
 
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So, what I thought was gonna be a SGNB procedure turned out to be something else. The doctor only communicated through my dad so there was some miscommunication there.

Instead he gave me, at his house, 400ml of lidocaine intravenously. His thinking was that this would affect my voltage gated sodium channels and that this worked for up to 30% of chronic pain sufferers.

Through administration I felt really dizzy and numb all over my body. I could feel all the senses numbing, thus I had some immediate relief from my Noxacusis (and tinnitus) and bursted into tears.

Sadly, it was very short lived, indeed. Just about an hour later my Noxacusis was actually much worse and still is as I am writing. My blood pressure and heart rate skyrocketed because of the dizziness and triggered my everlasting benzo withdrawal. I´m not gonna do that again.

I´m still scheduled for SGNB in the fall, but you never know with these doctors :banghead:

Hope your condition has stabilized and that you are back to normal.

I had lidocaine a couple of years ago during surgery and remember waking up with silence in my ears (Which turned out to be temporary...).

Anyway, good news that he is willing to do an actual SGNB!

Considering that you actually have one scheduled, maybe contact Myriam Westcott and ask if they have learnt anything more about the procedure?
 
Hope your condition has stabilized and that you are back to normal.

I had lidocaine a couple of years ago during surgery and remember waking up with silence in my ears (Which turned out to be temporary...).

Anyway, good news that he is willing to do an actual SGNB!

Considering that you actually have one scheduled, maybe contact Myriam Westcott and ask if they have learnt anything more about the procedure?

I've been in contact with her recently and have a consultation coming up. Myriam did give me some more info on the SGB though. I won't go super in depth as a lot of it is in her paper she is still waiting to get published and it would be better to contact her directly if you're interested, however the original patient from the article has continued to get SGBs, and now uses Botox for a longer lasting effect. It has mostly gotten rid of all her pain related symptoms so far.

It is just one person, but it's very exciting to see. I'm going to discuss it more with Myriam in my consultation, however I may give the stellate block a try as well. It's important to note I'm having issues specifically with acoustic shock disorder, so a lot of ttts related things, which is also what the original patient from the article was experiencing. What the effect for the SGB is for everyone is unknown still. And if you're having hyperacusis issues that aren't related to acoustic shock, it may be a totally different situation as well.
 
I've been in contact with her recently and have a consultation coming up. Myriam did give me some more info on the SGB though. I won't go super in depth as a lot of it is in her paper she is still waiting to get published and it would be better to contact her directly if you're interested, however the original patient from the article has continued to get SGBs, and now uses Botox for a longer lasting effect. It has mostly gotten rid of all her pain related symptoms so far.

It is just one person, but it's very exciting to see. I'm going to discuss it more with Myriam in my consultation, however I may give the stellate block a try as well. It's important to note I'm having issues specifically with acoustic shock disorder, so a lot of ttts related things, which is also what the original patient from the article was experiencing. What the effect for the SGB is for everyone is unknown still. And if you're having hyperacusis issues that aren't related to acoustic shock, it may be a totally different situation as well.

Hi Matt,

Do you live in Australia where Myriam is based or is the consultation done online?

Also, what is the difference between H and Acoustic Shock Disorder? I have read some papers on these topics but it's still not clear for me...
 
Hi Matt,

Do you live in Australia where Myriam is based or is the consultation done online?

Also, what is the difference between H and Acoustic Shock Disorder? I have read some papers on these topics but it's still not clear for me...

Online consultation.

Acoustic shock disorder seems to lead to a bunch of other issues on top of hyperacusis. Issues I've had are, hyperacusis, constant sharp stabbing pain (even in silence), dull ear pain, and pain radiating to the jaw and throat. Many of these issues are believed to be cause by TTTS, mainly the constant stabbing ear pain and pain radiating to the jaw. It's believed these are caused by the overactive Tympani muscle irritating the trigeminal nerve. This isn't proven, but just a good hypothesis. ASD is caused specifically from a single, unexpected noise near the ear. It does not have to be damagingly loud like a gunshot either, just unexpected, causing a significant startle response. That's where it may differ from hyperacusis caused by being at a concert or loud venue for hours.

The patient from the article had all of those symptoms and more. Vertigo, constant pain that she rated as 12/10, and some other stuff. I don't know the mechanics behind it, nor am I sure even any doctors would know at this point in time, but the stellate injection got rid of the constant pain almost immediately, and some of the other symptoms like hyperacusis slowly went away more after each successive injection.

I have seen SGBs can be used to treat PTSD with pretty good success, and Myriam does believe acoustic shock is caused by involuntary brain response from a sudden noise near the ear, so it could be correlated. That's also why even if this SGB does work for those dealing with acoustic shock disorder, it may not be as effective with other hyperacusis?

Obviously there's still a ton of research needed, but I'm really excited about the potential here, and seeing Myriams full paper when it's published. If I end up getting the SGB I will update everyone here as well. I'll be elated if it works just as well for me as the patient from the article.
 
Obviously there's still a ton of research needed, but I'm really excited about the potential here, and seeing Myriams full paper when it's published. If I end up getting the SGB I will update everyone here as well. I'll be elated if it works just as well for me as the patient from the article.

Yeah, keep us posted!
 
So, what I thought was gonna be a SGNB procedure turned out to be something else. The doctor only communicated through my dad so there was some miscommunication there.

Instead he gave me, at his house, 400ml of lidocaine intravenously. His thinking was that this would affect my voltage gated sodium channels and that this worked for up to 30% of chronic pain sufferers.

Through administration I felt really dizzy and numb all over my body. I could feel all the senses numbing, thus I had some immediate relief from my Noxacusis (and tinnitus) and bursted into tears.

Sadly, it was very short lived, indeed. Just about an hour later my Noxacusis was actually much worse and still is as I am writing. My blood pressure and heart rate skyrocketed because of the dizziness and triggered my everlasting benzo withdrawal. I´m not gonna do that again.

I´m still scheduled for SGNB in the fall, but you never know with these doctors :banghead:


You get that SGB yet?
 
@grate_biff You have developed hyperacusis as a result of your tapering benzos or tolerance w/d? I am experiencing the same thing and going through hell on all levels, including severe H and some T. I'm constantly in "fight or flight" mode now. How long have you been tapering? Are noises unseemingly loud also or do you only get the pain/burning? Do you startle with unexpected noises?. I also have "misophonia". I just feel like my nerves are constantly on edge. I still have .4 mg of K to taper and the H, which was mild and I ignored (assuming all benzo w/d) ramped up to a severe level with burning, everything (normal everyday sounds) getting very loud about 4-5 weeks ago, 2 weeks ago after I restarted my taper (after a long hold that threw me into acute). When voices are loud, I get a "stabbing" sort of sensation now. Also, things will often sound overly "sharp" and high pitched. How much do you have left in your taper? And if sounds are ultra loud, what are you doing to cope? Do you have the unexpected startling response to sudden noises? Do you wear earplugs all the time? I have 7 kids. Even with earplugs, I can hear things loud and they hurt my ears but audiologists told me not to wear them often as did Myriam through email. I have not yet consulted her via Skype. Trying to figure out how to live through this torture with 7 children. I had 2 good days recently, then dropped a large wooden toy in a trash bin that was much louder than expected and then was plunged back into hell again. Now, I'm looking at trialing some hearing aids that can maybe act as an electronic filter, using closed domes or semi-closed domes. I am using an audiologist who works with a lot of autistic kids and she's making no promises but thinks they could be helpful - they just have to be adjusted really well and carefully. Myriam said that they can be effective but are not always well tolerated by patients with hyperacusis and of course, they are horrendously expensive.

With the SGB, they use a steroid? I had occipital blocks done over a year ago (for occipital headaches) and afterwards, I was a jittery mess (and this was before benzo w/d) but I had several of them and I believe it was quite a lot....however, if I'm correct, the amount of steroids in the SGB (which they said I could get back then) was supposed to be fairly small but don't remember.
 
Hi @BenzoMom,

I have been meaning to write to you in the other thread (severe hyperacusis in benzo withdrawal) as I have very similar symptoms as you. I have had a difficult relationship with benzo for many years. A love/hate relationship i suppose.

I´ve had a start-stop relation to it for years, short acting and long acting kinds. I was committed for it in 2012, but thought I was out of it. Alcohol probably made me relapse and the stress from getting tinnitus in 2014 made the withdrawals all come back like a bang. As I found it helped immensely for my tinnitus I haven´t been able to leave it alone these past years. I tried to be smart about it, but still I realized some months ago I was becoming tolerant to 10-15 mg of Diazepam. It would not give me the same relief anymore. Since up dosing is out of the question, because it scares the hell out of me and probably wouldn´t help either, you realize you have to taper off of it. Again :dohanimation:.

Like you I have insanely painful hyperacusis or noxacusis since tapering. And how do one taper from intermittent use of 10-15 mg, but suddenly you find yourself needing it every day. I have written A LOT about benzo on this forum. I know a lot about its mechanisms on our CNS, still I feel like an idiot. I always knew it wasn´t a viable option still I couldn´t stop taking it because it is gives a much needed break from this fucked up condition we have.

I have chosen to taper fast. I´m already down to 2 mg and I started tapering in mid June.

My tinnitus is insanely ultra high pitched and even though the volume is reasonably low it is HELL.
I mask it all day long, through my TV or with bone conductive HP all day long apart from when I get some short time relief from either Flupentixol or Baclofen.

Still it is the noxacusis that kills me. I can´t tolerate even normal daily sounds. When I go out of my bed, where I spend almost all of my time I have to use serious hearing protection only to pee or make myself some food in the kitchen. Even the sound of my bare feet on the floor can shoot like electrical needles through my brain. Very painful. indeed. Luckily (or not) I don¨t have to deal with any kids or any people at all. I´ve totally isolated myself the last 2-3 years as I feel nobody understands what I´m dealing with. All I have is my dad ATM.

The withdrawal have made it much worse, but it was not easy before either. I can´t tell before I´m on the other side of it how it will end up. I feel from experience, when I have managed to be without benzo for 1-2 months (which I have managed twice these last 5 years) the pain will abate some. But it feels like it takes a lifetime to figure it out. Like for many both my tinnitus and hyperacusis fluctuate too, so it´s hard to get what does what in the end. I do not think it would be this bad if we had totally healthy ears either. Question for me is, when I´m truly free from withdrawals, will it be enough?

In addition I suffer with the usual symptoms, like tremors, anxiety, depression, body aches, restless legs, fatigue and despair. I only manage to sleep because of Mirtazapine and Melatonin and I keep my racing hart at bay with beta blockers.

I´m sorry you have to go through all this as well. I have found some comfort in your posts and let's just hope when on the other side of it we will be able to cope better with noise/sounds than we do now. This is no way to live. Thinking about sound every second of the day. Just looking at a plastic bag or the faucet sometimes send shocks up my spine because I know the sound of them will be excruciating.

When it comes to the procedure I will have (SGNB) on the 25 of October, I can only hope it will give me some relief. I applied for it in March btw. They like to have you wait in Norwegian healthcare, especially if you are really in pain.

It´s not a steroid they inject, but rather a nerve poison or anesthetic like lidocaine or botox.

I should hear with Ms. Westcott what she has used. Even though they will give me the injection, I don´t think they have any experience with it regarding hyper/noxacusis. I also have a feeling that even if it helps me, they won´t administer me with it again so I would have to find a private doctor to do it maybe, I don´t know. I live in one of the worlds richest countries, but our healthcare system is fucked up. It´s very rigid and lacks any kind of empathy IMO.

I don´t know if I answered any of your questions. I have been to sick to post anything on this forum the last couple of months and now since you approached me I just pour it out. I need hearing protection just to type on my keyboard as well.

I hope we both will come out of this with our life. I´m pretty sick of it all after 5 years.
I´m also scheduled for Lenire in December and I find a lot of hope with Frequency Therapeutics. I must live to see the results of phase II.

All the best!
 
@grate_biff I'm sorry you have been dealing with this so long. this is a hell I didn't know existed. There's no way I could taper down at the speed that you are but I have been at daily usage for many months and it was the hold on it that threw me into tolerance. I have actually slowed down my taper, which may or may not be good, I just freaking don't know anymore.

My tinnitus is also very high pitched and I'm noticing even more so today as being piercing but thankfully, not as loud as many here - it fluctuates as well. I will think I am having a good couple of days, I will get exposed to something and then get thrown back into the depths of hell, it seems. I had two good days, thought I was getting better or improved (that it was a mind thing). I dropped a toy too far high into the trash bin, it banged loud and then I was thrown into the pit of hell again for 3 days. Yesterday, I was able to go to a store and be ok - it was a little louder but not horrendous and I had my ear plugs in for a few times. But then last night, I was on my porch (I live in the country but next to a road) and a motorcycle came by (not close about 50 yards) and I didn't plug my ears, because I felt I had to test them. It wasn't that bad but then afterwards, the neighbors drove home and were again about 50 yards and they were yelling out their window at their dogs and their shouts just felt piercing and high pitched to my ears and like a knife stabbing them. So clearly, these sounds that I am testing with or being tested with are setting me back further. But I have had to test with them because I live in a loud house and I'm going to be bringing my kids home again soon and there are constant unexpected noises - a drop of something, my daughter screaming, whatever. So in order to bring them home, I have to figure it out and find a way to manage this somehow, whatever that is.

Have you tried any hearing aids that are specially programmed to act as a filter? I don't want to spend the thousands of dollars but if they work and that's what I have to do to endure this or even to live the rest of my life, then I will. I don't know if I will tolerate, though as I have a eustacian tube issue which causes echoing in my left ear. And they can amplify as well. And I just don't know......some say they help and others not. I guess I can only try. And if they don't work, I will not have a choice but to wear the special musician earplugs that they make (haven't even tried them yet), even though they have told me not to wear them all the time and they make the tinnitus worse. Do you wear your earplugs all the time? How can you stand the TV noise but you can't stand walking?

You must not take the baclofan either, as it is a GABA drug as well so it's just going to set you back. In order to heal your receptors, you have to stay off the benzos, alcohol, any GABA drug or supplement. What pisses me off is that we can't even take magnesium. I am sensitive to all meds and supplements now and many foods.

I do believe that if you are already down to 2 mg of Valium in your taper, that you can get off and heal but it's going to take time and you are going to have to stay away from them, alcohol, etc for much longer than you have, if not forever.

I look forward to hearing about the block.
 
Hi @BenzoMom,

I have been meaning to write to you in the other thread (severe hyperacusis in benzo withdrawal) as I have very similar symptoms as you. I have had a difficult relationship with benzo for many years. A love/hate relationship i suppose.

I´ve had a start-stop relation to it for years, short acting and long acting kinds. I was committed for it in 2012, but thought I was out of it. Alcohol probably made me relapse and the stress from getting tinnitus in 2014 made the withdrawals all come back like a bang. As I found it helped immensely for my tinnitus I haven´t been able to leave it alone these past years. I tried to be smart about it, but still I realized some months ago I was becoming tolerant to 10-15 mg of Diazepam. It would not give me the same relief anymore. Since up dosing is out of the question, because it scares the hell out of me and probably wouldn´t help either, you realize you have to taper off of it. Again :dohanimation:.

Like you I have insanely painful hyperacusis or noxacusis since tapering. And how do one taper from intermittent use of 10-15 mg, but suddenly you find yourself needing it every day. I have written A LOT about benzo on this forum. I know a lot about its mechanisms on our CNS, still I feel like an idiot. I always knew it wasn´t a viable option still I couldn´t stop taking it because it is gives a much needed break from this fucked up condition we have.

I have chosen to taper fast. I´m already down to 2 mg and I started tapering in mid June.

My tinnitus is insanely ultra high pitched and even though the volume is reasonably low it is HELL.
I mask it all day long, through my TV or with bone conductive HP all day long apart from when I get some short time relief from either Flupentixol or Baclofen.

Still it is the noxacusis that kills me. I can´t tolerate even normal daily sounds. When I go out of my bed, where I spend almost all of my time I have to use serious hearing protection only to pee or make myself some food in the kitchen. Even the sound of my bare feet on the floor can shoot like electrical needles through my brain. Very painful. indeed. Luckily (or not) I don¨t have to deal with any kids or any people at all. I´ve totally isolated myself the last 2-3 years as I feel nobody understands what I´m dealing with. All I have is my dad ATM.

The withdrawal have made it much worse, but it was not easy before either. I can´t tell before I´m on the other side of it how it will end up. I feel from experience, when I have managed to be without benzo for 1-2 months (which I have managed twice these last 5 years) the pain will abate some. But it feels like it takes a lifetime to figure it out. Like for many both my tinnitus and hyperacusis fluctuate too, so it´s hard to get what does what in the end. I do not think it would be this bad if we had totally healthy ears either. Question for me is, when I´m truly free from withdrawals, will it be enough?

In addition I suffer with the usual symptoms, like tremors, anxiety, depression, body aches, restless legs, fatigue and despair. I only manage to sleep because of Mirtazapine and Melatonin and I keep my racing hart at bay with beta blockers.

I´m sorry you have to go through all this as well. I have found some comfort in your posts and let's just hope when on the other side of it we will be able to cope better with noise/sounds than we do now. This is no way to live. Thinking about sound every second of the day. Just looking at a plastic bag or the faucet sometimes send shocks up my spine because I know the sound of them will be excruciating.

When it comes to the procedure I will have (SGNB) on the 25 of October, I can only hope it will give me some relief. I applied for it in March btw. They like to have you wait in Norwegian healthcare, especially if you are really in pain.

It´s not a steroid they inject, but rather a nerve poison or anesthetic like lidocaine or botox.

I should hear with Ms. Westcott what she has used. Even though they will give me the injection, I don´t think they have any experience with it regarding hyper/noxacusis. I also have a feeling that even if it helps me, they won´t administer me with it again so I would have to find a private doctor to do it maybe, I don´t know. I live in one of the worlds richest countries, but our healthcare system is fucked up. It´s very rigid and lacks any kind of empathy IMO.

I don´t know if I answered any of your questions. I have been to sick to post anything on this forum the last couple of months and now since you approached me I just pour it out. I need hearing protection just to type on my keyboard as well.

I hope we both will come out of this with our life. I´m pretty sick of it all after 5 years.
I´m also scheduled for Lenire in December and I find a lot of hope with Frequency Therapeutics. I must live to see the results of phase II.

All the best!
I am not sure if you are still drinking alcohol, but my addiction specialist said this was one thing that should be avoided during tapering and for a while after ceasing benzos.

@BenzoMom is correct this may make your situation so much worse.... I hope you feel better soon:huganimation:
 
I am not sure if you are still drinking alcohol, but my addiction specialist said this was one thing that should be avoided during tapering and for a while after ceasing benzos.

@BenzoMom is correct this may make your situation so much worse.... I hope you feel better soon:huganimation:
I took a while, but it´s finally sunk in, alcohol is pure poison in withdrawal. It will prolong and destroy progress. Thanks, Star:huganimation:
 
How can you stand the TV noise but you can't stand walking?
Im listening to a special noise I´ve found on YT to mask my T, but lately it has become painful as well.

Ordinary TV noise I keep extremely low or muted. If it¨s a soccer game, I¨ll keep it muted as I can´t stand the noise of crowds cheering or clapping.
 
I took a while, but it´s finally sunk in, alcohol is pure poison in withdrawal. It will prolong and destroy progress. Thanks, Star:huganimation:
Benzo Withdrawal is horrendous worse than cocaine, here is Stevie Nicks' from Fleetwood Mac's summary of her account of benzo use... Do not suffer alone, everybody should have someone to help them get through this... you can PM me anytime, I will always support anybody in need.

"Singer Stevie Nicks has publicized the dangers of Klonopin by describing her own detox from the prescription drug as "hellish" and worse than withdrawing from cocaine or heroin. In fact, Nicks was introduced to Klonopin at the Betty Ford clinic, with the intention of assisting her with new-found sobriety! Recovering addicts and alcoholics have all too often been helped off of one drug addiction by being introduced to a new one, all with the best of intentions, of course." - Benzos: more dangerous than the conditions they treat? Occasional Planet, September 14, 2011.

"Seventies-era rock star Stevie Nicks is the poster girl for the perils of Klonopin addiction. In almost every interview, the former lead singer of Fleetwood Mac makes a point of mentioning the toll her abuse of the drug has taken on her life. This month, while promoting her new solo album, In Your Dreams, she told Fox that she blamed Klonopin for the fact that she never had children. "The only thing I'd change [in my life] is walking into the office of that psychiatrist who prescribed me Klonopin. That ruined my life for eight years," she said. "God knows, maybe I would have met someone, maybe I would have had a baby."

Nicks checked herself into the Betty Ford Clinic in 1986 to overcome a cocaine addiction. After her release, the psychiatrist in question prescribed a series of benzos - first Valium, then Xanax, and finally Klonopin - supposedly to support her sobriety. "[Klonopin] turned me into a zombie," she told US Weekly in 2001, according to the website benzo.org.uk, one of many patient-run sites on the Internet offering information about benzodiazepine addiction, withdrawal and recovery. Nicks has described the drug as a "horrible, dangerous drug," and said that her eventual 45-day hospital detox and rehab from the drug felt like "somebody opened up a door and pushed me into hell." Others have described Klonopin's effects as beginning with an energized sense of euphoria but ending up with horrifying sense of anxiety and paralysis, akin to sticking your tongue into an electric outlet, or suddenly feeling that your brain is on fire." - America's Most Dangerous Pill? AlterNet, June 1, 2011.

Stay strong, :huganimation:
 
@grate_biff Hang in there. You are getting close - much closer than me. I am doing a microtaper and it's very brutal. Only 25% down from 2 months ago. I can't go any faster. Anyhow, look into low gain hearing aids once you are done, with custom molded ear plugs. The plugs can keep noises out, the hearing aids can be adjusted by a good audiologist to change pitch, to shut down when noises are too loud, etc. I have been in contact with a person in Denmark and in UK who these are working for well for H. I am getting ready to try them but for me, I can't do custom plugs b/c they are a "trial" pair so I have to try them with closed domes only. I would be cautious about the Leniere device. Maybe hold off.....
 
I took a while, but it´s finally sunk in, alcohol is pure poison in withdrawal. It will prolong and destroy progress. Thanks, Star:huganimation:
I am not sure if you are tapering this drug on your own or under a specialist, but please do not hesitate to pm me if you think I can assist you in anyway, I did read that you are tapering fast...very fast...I know benzomom contacted Myriam Westcott here in Melbourne, she is excellent in both the field of tinnitus and Hyperacusis I am sure she would answer any questions you may have, she is a lovely lady. Her website link I have placed below,

https://www.dineenwestcottmoore.com.au
 
Hi @BenzoMom,

When it comes to the procedure I will have (SGNB) on the 25 of October, I can only hope it will give me some relief. I applied for it in March btw. They like to have you wait in Norwegian healthcare, especially if you are really in pain.

It´s not a steroid they inject, but rather a nerve poison or anesthetic like lidocaine or botox.

I should hear with Ms. Westcott what she has used. Even though they will give me the injection, I don´t think they have any experience with it regarding hyper/noxacusis. I also have a feeling that even if it helps me, they won´t administer me with it again so I would have to find a private doctor to do it maybe, I don´t know. I live in one of the worlds richest countries, but our healthcare system is fucked up. It´s very rigid and lacks any kind of empathy IMO.

I don´t know if I answered any of your questions. I have been to sick to post anything on this forum the last couple of months and now since you approached me I just pour it out. I need hearing protection just to type on my keyboard as well.

I´m also scheduled for Lenire in December and I find a lot of hope with Frequency Therapeutics. I must live to see the results of phase II.

All the best!
Just one more month! Really hope it works for you. The impression I got from the email with Myriam was that Botox had the most permanent effect.

If you have not done so already I would drop her an email and ask if she has learnt anything more about the procedure. She was very quick to reply. As she is clearly passionate about the topic and sufferers I am sure she would like to know how it goes for you in either case.
 
Thank you @Star64 and @Johan_L.

I just sent her an e-mail.(or a general enquiry on her/their site)

I¨ve booked an hotel near the hospital as the procedure is very early in the morning. Read their info-pamphlet also: They will put me in a wheelchair right after the procedure.
 
Thank you @Star64 and @Johan_L.

I just sent her an e-mail.(or a general enquiry on her/their site)

I¨ve booked an hotel near the hospital as the procedure is very early in the morning. Read their info-pamphlet also: They will put me in a wheelchair right after the procedure.


I hope it goes well for you. I asked Myriam during my consultation if she knew of anyone else who had been given an SGB and there wasn't anyone, so I'm sure she'd love to hear from you whether it works or not (hopefully it works just as well as it did for her patient!). I'm very much contemplating getting one myself since my issues are quite similar to Myraim's patient. If the SGB works well for you that might be what pushes me over the edge to get one. The risks are pretty minimal 99% of the time from what I've read even though it is somewhat invasive.

Even if it's just a band-aid, I'm really hoping this is an effective treatment until researchers can figure out the true underlying cause of these issues we're dealing with.
 
I hope it goes well for you. I asked Myriam during my consultation if she knew of anyone else who had been given an SGB and there wasn't anyone,

This is a bit worrying... I thought she was doing a trial to follow up on the case study. Did she mention why she and the pain doctor have not continued investigating the SGB?

@grate_biff Good luck on Friday!
 
This is a bit worrying... I thought she was doing a trial to follow up on the case study. Did she mention why she and the pain doctor have not continued investigating the SGB?

@grate_biff Good luck on Friday!

No one else has wanted to try the SGB was what she told me. While she did say it was moderately invasive, all the research I've done says it's a pretty minimal risk procedure.

But it is essentially unproven except for one case so I can understand why other may be hesitant.

She also has yet to release her paper so many people may not know about it
 
@grate_biff Good luck on Friday!
I´m sorry to tell I have had to postpone the whole thing.

In addition to my severe benzo withdrawal I experienced the greatest shock of my life two weeks ago.

My dear father, best friend and caretaker/supporter had a cardiac arrest and was clinically dead for ten minutes.

For three days, when he was in induced coma nobody could tell if there would be brain damage or not. Or if he would even wake up at all.

It seems now everything have worked out well and he will be ok after they put a stent in his vein.

My life now is a constant panic attack and I'm unable to leave my apartment, even my bed really.

Noxacusis is worse than ever and I´m extremely suicidal.

I hang on just because I can´t disappoint my dad.

I´m sorry!
 

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