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?
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.
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)
It shouldn't be hard to get your GP to refer you to pain management. Mine gave me the slip like it was candy.
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.
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.
@grate_biff did you ever get the real 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
My hyperacusis has improved a lot with the course of time so I didn't try this out!
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.
Fight who denied the referral and maybe have your ear surgeon get in contact with them.
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