Hello Everyone,
I'm new here, and could use some advise with dealing with public healthcare and doctors who won't take risks (and follow the ENTs' guideline of "do nothing" as they are the "experts")
I initially developed tinnitus after a noise exposure 2 months ago. Went from a hiss to a whine and dine within a week. Was given steroids which seemed to make the problem worse (50mg for 2 days). After persuading a GP to give me a true trial of steroids and doing HBO, my hearing and tinnitus had greatly stabilized (was left with a hiss in my left and a low rumble wavering seashell tone in my right (which occured with the steroids), only audible in 25 dB rooms and no longer reactive as they had been previously).
Fast forward to now, I took a plane (was rather coerced under duress by a support network I've since ditched) to see another ENT and the hearing protection I had (doubled) was not enough. It was a floatplane and registered 95 dB in the cabin.
I had a tremendous spike and intermittent "chimes which were amplified when they occurred with real sound, even chewing" which randomly appeared along with new tones.
Then I decided to do HBO to help the situation a day later. Apparently that was a big mistake, because I could hear the new tones fading, but they were replaced with what's best known as non-sense. RANDOM blips, bleeps, laser blasts, chimes all throughout my skull. Texting and banging on the chamber to leave apparently didn't make it fast enough for them to do anything about it quickly.
Many of those subsided, but I've been left with severe sound distortion (water sounds like chimes, fans sound like they are beeping).
As time has passed (about 5 days) things are progressively getting worse. 3 days ago I began to get a unilateral "bell toll" tone which was completely random and rhythmic. It had me rushing for Xanax and Clonazepam as they have been the only ways I've been coping since this onset. I've developed low unilateral tones which react to sound (very fun around fridges) in a big way, it sounds like they react up to 60 dB to me and sound like a wine glass being made to play low resonating music (just very intermittent and momentary).
They also are reactive and will match the volume of other sounds (even though they are NOT the same tone).
White noise and fans sound... at best demonic. Full of beeps, moans, screeches.
My GP is not on board with prescribing another round of steroids, nor looking into safer viable alternatives that might be safer because they aren't "used for tinnitus" (Pentoxifylline).
I'm definitely desperate to turn down the tones, HBO had previously worked, but now I'm scared shitless of it. I feel steroids would be beneficial (even if they leave new tones behind as they're always so far been quiet and slowly fade).
Is there any way I can get him to play ball? Shopping for a new GP right now would prove really difficult in my location, public healthcare and all... and I feel like I've been on the clock since whatever happened in that plane. Sounds keep appearing and any kind of low volume masking seems to make things worse (onset of new sounds, aggravated tinnitus).
When this whole mess started, I found the combination of benzodiazepines and steroids worked extremely well for making this quiet and although not always "quiet" when I tapered, it was waaaaaaay better than baseline. My doctor isn't onboard this time with doing it again so soon and prefers to defer to the ENT and what they would think, which is do nothing (and getting in touch with specialists in Canada is a nightmare).
Since this new onset I've been off work yet again, because this time it is too much. The tones are too loud, too busy, too random to concentrate or habituate. They can't be masked, sounds are wrecked. Was just getting my life back together and now getting hit this hard again feels like my world is demolished. I'm hating myself for putting my trust in people whom really didn't understand or have my best interests at heart.
I'm afraid to even "try" to mask at night since it could be worsening it (I've only used spurts of masking using large 40 dB volume fans which sound distorted but "trap the demons" out of my head) and benzos I had JUST finished tapering before all this began again and I'm afraid could also be making things worse (dependence and upregulated GABA receptors).
Any advice from experts would be appreciated. I know habituation is key, but I've been thrown into the deep end of a pool, and when I was barely... BARELY... swimming someone turned on the waves to maximum.
Regards,
Michael from BC
I'm new here, and could use some advise with dealing with public healthcare and doctors who won't take risks (and follow the ENTs' guideline of "do nothing" as they are the "experts")
I initially developed tinnitus after a noise exposure 2 months ago. Went from a hiss to a whine and dine within a week. Was given steroids which seemed to make the problem worse (50mg for 2 days). After persuading a GP to give me a true trial of steroids and doing HBO, my hearing and tinnitus had greatly stabilized (was left with a hiss in my left and a low rumble wavering seashell tone in my right (which occured with the steroids), only audible in 25 dB rooms and no longer reactive as they had been previously).
Fast forward to now, I took a plane (was rather coerced under duress by a support network I've since ditched) to see another ENT and the hearing protection I had (doubled) was not enough. It was a floatplane and registered 95 dB in the cabin.
I had a tremendous spike and intermittent "chimes which were amplified when they occurred with real sound, even chewing" which randomly appeared along with new tones.
Then I decided to do HBO to help the situation a day later. Apparently that was a big mistake, because I could hear the new tones fading, but they were replaced with what's best known as non-sense. RANDOM blips, bleeps, laser blasts, chimes all throughout my skull. Texting and banging on the chamber to leave apparently didn't make it fast enough for them to do anything about it quickly.
Many of those subsided, but I've been left with severe sound distortion (water sounds like chimes, fans sound like they are beeping).
As time has passed (about 5 days) things are progressively getting worse. 3 days ago I began to get a unilateral "bell toll" tone which was completely random and rhythmic. It had me rushing for Xanax and Clonazepam as they have been the only ways I've been coping since this onset. I've developed low unilateral tones which react to sound (very fun around fridges) in a big way, it sounds like they react up to 60 dB to me and sound like a wine glass being made to play low resonating music (just very intermittent and momentary).
They also are reactive and will match the volume of other sounds (even though they are NOT the same tone).
White noise and fans sound... at best demonic. Full of beeps, moans, screeches.
My GP is not on board with prescribing another round of steroids, nor looking into safer viable alternatives that might be safer because they aren't "used for tinnitus" (Pentoxifylline).
I'm definitely desperate to turn down the tones, HBO had previously worked, but now I'm scared shitless of it. I feel steroids would be beneficial (even if they leave new tones behind as they're always so far been quiet and slowly fade).
Is there any way I can get him to play ball? Shopping for a new GP right now would prove really difficult in my location, public healthcare and all... and I feel like I've been on the clock since whatever happened in that plane. Sounds keep appearing and any kind of low volume masking seems to make things worse (onset of new sounds, aggravated tinnitus).
When this whole mess started, I found the combination of benzodiazepines and steroids worked extremely well for making this quiet and although not always "quiet" when I tapered, it was waaaaaaay better than baseline. My doctor isn't onboard this time with doing it again so soon and prefers to defer to the ENT and what they would think, which is do nothing (and getting in touch with specialists in Canada is a nightmare).
Since this new onset I've been off work yet again, because this time it is too much. The tones are too loud, too busy, too random to concentrate or habituate. They can't be masked, sounds are wrecked. Was just getting my life back together and now getting hit this hard again feels like my world is demolished. I'm hating myself for putting my trust in people whom really didn't understand or have my best interests at heart.
I'm afraid to even "try" to mask at night since it could be worsening it (I've only used spurts of masking using large 40 dB volume fans which sound distorted but "trap the demons" out of my head) and benzos I had JUST finished tapering before all this began again and I'm afraid could also be making things worse (dependence and upregulated GABA receptors).
Any advice from experts would be appreciated. I know habituation is key, but I've been thrown into the deep end of a pool, and when I was barely... BARELY... swimming someone turned on the waves to maximum.
Regards,
Michael from BC
Member
