Tenacious Tinnitus Club – Ear Pressure, Noise and Hyperacusis

[Guest [...]]

Birdman,

I was reading way back on this thread a few years ago and saw that you took Remeron at a low dose, sometimes a dose broken through the night. If I see correctly. As the going through each thread post is tedious, may I ask if it continued to help you sleep,  weight gain, antidepressant effects? Hard to get off of? Two weeks ago my doc prescribed me amitriptyline. Took the full 50 MG doses for two nights, hated the way it made me feel, and after the groggyness wore off my ears screamed! Cut my Ativan to 1.5 last night, couldn't sleep, so I broke up an amitriptyline and only too about 12.5mgs. Still woke up groggy, and feel irritated. I hate the hung over feeling! Not sure if amitriptyline is the way to go.or not. Buspar I have read can cause tinnitus, Remeron hard to get of, hydroxy zine  might be promising as an anti-anxiety, which is what I need. Let go of the fear! Sorry for rambling.

[[tw...]]

Anybody else's tinnitus ever turn into the sound of a land-line phone being left off the hook? Obnoxious beeping sound (beeping doesn't really describe it though, lol.) I keep thinking someone in an office down the hall, has their phone off the hook. I can't only "hear" it faintly. Irritating!

[[Bi...]]

Birdman,

I was reading way back on this thread a few years ago and saw that you took Remeron at a low dose, sometimes a dose broken through the night. If I see correctly. As the going through each thread post is tedious, may I ask if it continued to help you sleep,  weight gain, antidepressant effects? Hard to get off of? Two weeks ago my doc prescribed me amitriptyline. Took the full 50 MG doses for two nights, hated the way it made me feel, and after the groggyness wore off my ears screamed! Cut my Ativan to 1.5 last night, couldn't sleep, so I broke up an amitriptyline and only too about 12.5mgs. Still woke up groggy, and feel irritated. I hate the hung over feeling! Not sure if amitriptyline is the way to go.or not. Buspar I have read can cause tinnitus, Remeron hard to get of, hydroxy zine  might be promising as an anti-anxiety, which is what I need. Let go of the fear! Sorry for rambling.

 

 

Amitriptyline is on the OTOTOXIC list so it may make things worse. 

Remeron, hydroxyzine and all those other H1 blockers stop working after 3 months. When your ready to stop playing around with H1 blockers I have one with a little more punch and it will have you yawning through every wave.

 

In the end the BEST drug for killing off anxiety and sleeping well was Clonidine for me. It's an A2  norepinephrine blocker.

 

The first 2 times I took it I fell asleep uncontrollably! Once on the dinner table at home and once at a restaurant in public.  I took .2mg which was WAY too much in the beginning so I cut the doses in half after that. 

 

When your ready to take some serious control over your anxiety try clonidine and start off slow. It has a long 12 hour half life perfect for bed time.

You will become chemically dependent on clonidine but it's easy to taper if you go slow enough and a great med to beat the benzo's during a taper  (Warning: You may sleep through the whole taper however )

 

When your ready to get serious look into Clonidine.

 

Don't suffer through withdrawal, yawn at it

 

https://en.wikipedia.org/wiki/Clonidine

 

Birdy

[Guest [...]]

Birdman,

I was reading way back on this thread a few years ago and saw that you took Remeron at a low dose, sometimes a dose broken through the night. If I see correctly. As the going through each thread post is tedious, may I ask if it continued to help you sleep,  weight gain, antidepressant effects? Hard to get off of? Two weeks ago my doc prescribed me amitriptyline. Took the full 50 MG doses for two nights, hated the way it made me feel, and after the groggyness wore off my ears screamed! Cut my Ativan to 1.5 last night, couldn't sleep, so I broke up an amitriptyline and only too about 12.5mgs. Still woke up groggy, and feel irritated. I hate the hung over feeling! Not sure if amitriptyline is the way to go.or not. Buspar I have read can cause tinnitus, Remeron hard to get of, hydroxy zine  might be promising as an anti-anxiety, which is what I need. Let go of the fear! Sorry for rambling.

 

 

Amitriptyline is on the OTOTOXIC list so it may make things worse. 

Remeron, hydroxyzine and all those other H1 blockers stop working after 3 months. When your ready to stop playing around with H1 blockers I have one with a little more punch and it will have you yawning through every wave.

 

In the end the BEST drug for killing off anxiety and sleeping well was Clonidine for me. It's an A2  norepinephrine blocker.

 

The first 2 times I took it I fell asleep uncontrollably! Once on the dinner table at home and once at a restaurant in public.  I took .2mg which was WAY too much in the beginning so I cut the doses in half after that. 

 

When your ready to take some serious control over your anxiety try clonidine and start off slow. It has a long 12 hour half life perfect for bed time.

You will become chemically dependent on clonidine but it's easy to taper if you go slow enough and a great med to beat the benzo's during a taper  (Warning: You may sleep through the whole taper however )

 

When your ready to get serious look into Clonidine.

 

Don't suffer through withdrawal, yawn at it

 

https://en.wikipedia.org/wiki/Clonidine

 

Birdy

Yeah, I didn't take amitriptyline too long ng, only a few days. My blood pressure is already low, but my heart rate is high...I guess add it to another withdrawal symptom list. I saw my doctor yesterday, and he is retiring. So now I have to start with a new doctor next month.  In the meantime, hydroxyzine, which may not do much.  When I start with my new doctor,  hopefully they will have a different perspective.  I may have to really explore the one you suggested, if deemed safe.

[[Bi...]]

Birdman,

I was reading way back on this thread a few years ago and saw that you took Remeron at a low dose, sometimes a dose broken through the night. If I see correctly. As the going through each thread post is tedious, may I ask if it continued to help you sleep,  weight gain, antidepressant effects? Hard to get off of? Two weeks ago my doc prescribed me amitriptyline. Took the full 50 MG doses for two nights, hated the way it made me feel, and after the groggyness wore off my ears screamed! Cut my Ativan to 1.5 last night, couldn't sleep, so I broke up an amitriptyline and only too about 12.5mgs. Still woke up groggy, and feel irritated. I hate the hung over feeling! Not sure if amitriptyline is the way to go.or not. Buspar I have read can cause tinnitus, Remeron hard to get of, hydroxy zine  might be promising as an anti-anxiety, which is what I need. Let go of the fear! Sorry for rambling.

 

 

Amitriptyline is on the OTOTOXIC list so it may make things worse. 

Remeron, hydroxyzine and all those other H1 blockers stop working after 3 months. When your ready to stop playing around with H1 blockers I have one with a little more punch and it will have you yawning through every wave.

 

In the end the BEST drug for killing off anxiety and sleeping well was Clonidine for me. It's an A2  norepinephrine blocker.

 

The first 2 times I took it I fell asleep uncontrollably! Once on the dinner table at home and once at a restaurant in public.  I took .2mg which was WAY too much in the beginning so I cut the doses in half after that. 

 

When your ready to take some serious control over your anxiety try clonidine and start off slow. It has a long 12 hour half life perfect for bed time.

You will become chemically dependent on clonidine but it's easy to taper if you go slow enough and a great med to beat the benzo's during a taper  (Warning: You may sleep through the whole taper however )

 

When your ready to get serious look into Clonidine.

 

Don't suffer through withdrawal, yawn at it

 

https://en.wikipedia.org/wiki/Clonidine

 

Birdy

Yeah, I didn't take amitriptyline too long ng, only a few days. My blood pressure is already low, but my heart rate is high...I guess add it to another withdrawal symptom list. I saw my doctor yesterday, and he is retiring. So now I have to start with a new doctor next month.  In the meantime, hydroxyzine, which may not do much.  When I start with my new doctor,  hopefully they will have a different perspective.  I may have to really explore the one you suggested, if deemed safe.

 

There are millions of people on Clonidine for a blood pressure med.  I think it the #5 med for BP in the world.  Good luck and I hope it helps you

[Guest [...]]

Sounds really good... I have made a journal note when I meet my new doctor.

[[...]]

I'm 14 months off now and I have these unbearable waves where my tinnitus, hyperacusis, sound distortions and ear pressure get absolutely unbearable.  It's literally painful like nails on a chalkboard 24 hours a day during these waves.  3 tones...dentist drill, shrill hiss, and actual low ringing tone.  When I plug my ears it sounds like a working factory in there.  During my 14 mo. Off At its best during the good periods it's just a low hiss that isn't really that bothersome with some low hyperacusis (sound sensitivity). I've had a couple periods of minutes where it felt like it went away completely. Weird thing is that from month 2-6 it almost completely went away it was very manageable,  then I went to a loud outdoor festival that caused my ear symptoms to go insane and it's been up and down with Windows and waves ever since. I hope these are signs of healing or something because it's absolutely debilitating right now. Also the ear pressure right now is nuts I actually pop my ears like 500 times a day and that's not an exaggeration. Can anyone relate to these insane waves?  Or has anyone had a somewhat similar experience with their ear symptoms?  I never get any replies on this stuff when I post on the main forum.

[[Bi...]]

I'm 14 months off now and I have these unbearable waves where my tinnitus, hyperacusis, sound distortions and ear pressure get absolutely unbearable.  It's literally painful like nails on a chalkboard 24 hours a day during these waves.  3 tones...dentist drill, shrill hiss, and actual low ringing tone.  When I plug my ears it sounds like a working factory in there.  During my 14 mo. Off At its best during the good periods it's just a low hiss that isn't really that bothersome with some low hyperacusis (sound sensitivity). I've had a couple periods of minutes where it felt like it went away completely. Weird thing is that from month 2-6 it almost completely went away it was very manageable,  then I went to a loud outdoor festival that caused my ear symptoms to go insane and it's been up and down with Windows and waves ever since. I hope these are signs of healing or something because it's absolutely debilitating right now. Also the ear pressure right now is nuts I actually pop my ears like 500 times a day and that's not an exaggeration. Can anyone relate to these insane waves?  Or has anyone had a somewhat similar experience with their ear symptoms?  I never get any replies on this stuff when I post on the main forum.

 

Sounds like you are catching the tail end of a taper that was just too quick.

You have EVERY symptom I had and dozens of my friends here have.  It's not the festively.  It's that the MID BRAIN (https://goo.gl/images/EdDBMf) gets rid of benzo's at a very slow rate of speed while the Cerebellum is much faster and has less places for benzo's to accumulate.

 

This is why tinnitus is the last S/X to go and ALSO the one the sneaks up on you LONG after you jump or only at the end of your taper.

 

Too reverse engineer this phenomenon people who take benzo's to get rid of tinnitus only get good results after 6 to 12 months of benzo therapy.  The mid brain moves at a very slow speed in both directions.

 

What I did.  I started low dose Librium 5 mg twice a week and 1600 MG Gabapentin per day.  Tinnitus is gone for now but took 4 months for peak results.  I will retaper that crap VERY VERY VERY slow in the future but for now I have to pay the bills and have a life for a little while. 4 years of this tapering crap was killing my family and financial life!

 

Why Low dose  / Long acting benzo's plus Gabapentin work together on:

 

Benzodiazepine-receptor-deficiency-tinnitus?

 

SEE: Reading material and videos

 

http://www.tinnitusjournal.com/articles/benzodiazepine-receptor-deficiency-and-tinnitus.pdf

 

Dr. Robert Aaron Levine's Tinnitus Tutorial

 

Good luck and go SUPER SLOW

 

 

[[...]]

Thanks Birdman!

 

I'm actually just over 14 months completely off CT after short term use.  Wait....so your tinnitus is gone from using the Librium....wow I've read all your post that's cool.  So this mid brain thing you really think we heal from the ear symptoms.  I know Brooklyn Joe did after having tinnitus for like 13 years. Over 9 on benzos than 4 off.

[[Bi...]]

Thanks Birdman!

 

I'm actually just over 14 months completely off CT after short term use.  Wait....so your tinnitus is gone from using the Librium....wow I've read all your post that's cool.  So this mid brain thing you really think we heal from the ear symptoms.  I know Brooklyn Joe did after having tinnitus for like 13 years. Over 9 on benzos than 4 off.

 

My philosophy is this, Tinnitus is a sign of tapering too fast. 

Maybe Joe should have done a 13 year taper     I half serious about that too  

[[...]]

Thanks Birdman!

 

I'm actually just over 14 months completely off CT after short term use.  Wait....so your tinnitus is gone from using the Librium....wow I've read all your post that's cool.  So this mid brain thing you really think we heal from the ear symptoms.  I know Brooklyn Joe did after having tinnitus for like 13 years. Over 9 on benzos than 4 off.

 

My philosophy is this, Tinnitus is a sign of tapering too fast. 

Maybe Joe should have done a 13 year taper     I half serious about that too

Lol....but bottom line you do think that tinnitus caused by benzos will go away?  And do you think tinnitus acts in windows and waves like other symptoms?  I didn't think so but now my T and H are so up and down I'm beginning to believe it does act and heal that way.  If I'm fact it is healing.

[[fl...]]

This thread was one of the big deceptions of 2016. Birdman made some claims that she'd been given botox at the houseear clinic, and the clinic denied doing so. We're starved for info over at fb and tinnitustalk, and when I pointed out the clinic's denial, birdman claimed to be worried people would discover her real identity. When I had to point out no clinic's allowed to do so and nobody cares, there was nothing but silence, of an astoundingly highly deceptive level.

 

I see you all merely have tinnitus and only a miniscule minority have hyperacusis and tensor tympani syndrome, so this brutal incongruity isn't affecting you directly and the thread is still inching along. Maybe birdman wants to join the tensor tympani syndrome and hyperacusis support groups on facebook with a phone verified account made by Vladimir Putin. Do we have a deal?

 

You really don't want to give credence to what's written in this thread, it's the weirdest most unacceptable waste of time I went through last year.

[[...]]

Well I have hyperacusis, sound distortion and TTS from benzos.  From my research I'm not sure I have classic hyperacusis but when the waves come it sure feels that way and is almost completely debilitating  And I think even though some people may only have tinnitus their is no way to judge whether their suffering is any less so I try not to.  I've thought about doing tinnitus talk but it scares me a little I guess I'm not ready to accept that this is permanent even though I know there is a chance it Might be.

[[Bi...]]

Well I have hyperacusis, sound distortion and TTS from benzos.  From my research I'm not sure I have classic hyperacusis but when the waves come it sure feels that way and is almost completely debilitating  And I think even though some people may only have tinnitus their is no way to judge whether their suffering is any less so I try not to.  I've thought about doing tinnitus talk but it scares me a little I guess I'm not ready to accept that this is permanent even though I know there is a chance it Might be.

 

For many of us it does take a very long time to heal from this one little nagging S/X.

What make's tinnitus so different is that it's not based in the cerebellum like most of the anxiety S/X are.  Tinnitus is problem in the fusiform cells in the DCN and many of the surrounding "MID BRAIN" areas.

 

I love this article as it really showed how complex tinnitus and the whole mid brain area is:

 

Ref: http://discovermagazine.com/2010/oct/26-ringing-in-the-ears-goes-much-deeper

 

'In 2004 Louis Lowry, an ear-nose-and-throat doctor at Thomas Jefferson University in Philadelphia, discovered that the caudate and the putamen play an important role in tinnitus by studying an unusual patient—himself.

 

As a young man, Lowry spent a summer working on a farm with a noisy tractor. The experience left him with partial hearing loss and a high-pitched ringing in his ears that plagued him for 40 years. Then at age 63, Lowry suffered a mild stroke. A CT scan and an MRI revealed that the stroke had damaged his caudate and putamen. But the stroke also brought a pleasant surprise. Lowry was completely cured of his tinnitus, without any further hearing loss.

 

Steven Cheung and Paul Larson, two doctors at the University of California, San Francisco, set out to reproduce Lowry’s experience. They took advantage of the fact that some people with Parkinson’s disease get electrodes surgically implanted in their brain stem to control their symptoms. The electrodes typically have to pass the caudate and putamen to reach their target. Cheung and Larson engaged five patients preparing to'

 

 

 

[[Bi...]]

This thread was one of the big deceptions of 2016. Birdman made some claims that she'd been given botox at the houseear clinic, and the clinic denied doing so. We're starved for info over at fb and tinnitustalk, and when I pointed out the clinic's denial, birdman claimed to be worried people would discover her real identity. When I had to point out no clinic's allowed to do so and nobody cares, there was nothing but silence, of an astoundingly highly deceptive level.

 

I see you all merely have tinnitus and only a miniscule minority have hyperacusis and tensor tympani syndrome, so this brutal incongruity isn't affecting you directly and the thread is still inching along. Maybe birdman wants to join the tensor tympani syndrome and hyperacusis support groups on facebook with a phone verified account made by Vladimir Putin. Do we have a deal?

 

You really don't want to give credence to what's written in this thread, it's the weirdest most unacceptable waste of time I went through last year.

Flarp, your mission to get my real name, my email address and my doctors name will end up being a "Flop"   Don't act so aggressive and nutty

[[me...]]

This thread was one of the big deceptions of 2016. Birdman made some claims that she'd been given botox at the houseear clinic, and the clinic denied doing so. We're starved for info over at fb and tinnitustalk, and when I pointed out the clinic's denial, birdman claimed to be worried people would discover her real identity. When I had to point out no clinic's allowed to do so and nobody cares, there was nothing but silence, of an astoundingly highly deceptive level.

 

I see you all merely have tinnitus and only a miniscule minority have hyperacusis and tensor tympani syndrome, so this brutal incongruity isn't affecting you directly and the thread is still inching along. Maybe birdman wants to join the tensor tympani syndrome and hyperacusis support groups on facebook with a phone verified account made by Vladimir Putin. Do we have a deal?

 

You really don't want to give credence to what's written in this thread, it's the weirdest most unacceptable waste of time I went through last year.

 

Hello Flarp,

 

The above post is not acceptable. We do not allow members to attack each other in this way.  Birdman is a long-time member of this forum.  This is from our Rules and Guidelines:

 

Be polite towards, and respectful of, your fellow Buddies. We do not tolerate attacks upon fellow members. Any account created for the purposes of causing arguments and/or ill-feeling will be banned.

 

megan918

Administrator

 

[[fl...]]

 

Hello Flarp,

 

The above post is not acceptable. We do not allow members to attack each other in this way.  Birdman is a long-time member of this forum.  This is from our Rules and Guidelines:

 

Be polite towards, and respectful of, your fellow Buddies. We do not tolerate attacks upon fellow members. Any account created for the purposes of causing arguments and/or ill-feeling will be banned.

 

megan918

Administrator

 

This account was made to find out about this possible method of botox for the rare condition of hyperacusis, not to attack anyone. I came here to look into the claim and was given what looks like false info, as the clinic denied applying botox. How would you react? I was accused of the utterly surreal mission of ''trying to find out Birdman's real name'' when I asked what they saw in Birdman's MRI, so it looked like deflecting away from the question. How else would you interpret it? The statement of seeing hyperacusis on an MRI makes little sense, actually it makes no sense, all while people on forums on hyperacusis have to struggle with this brutal condition with plenty of different etiologies, apparently that simple question is a mission to find someone's name. How would you react if you found out hyperacusis could be seen on an MRI and then told to shove off to phone a fake clinic and get accused of doxxing someone? Thus all I'm saying in the message is to say this thread applies to hyperacusis is beyond unacceptable, no matter how hard I tried to make it seem so, so I could bring back some good news to real people with this real condition over at other forums or facebook. Instead I had to close up the post with the ridiculous situation of having phoned a clinic that denied using botox and being told about ''hyperacusis seen on an MRI''. I actually asked maybe another condition was being seen on the MRI, and the hyperacusis was a subsidiary to that condition, but apparently that question was also me on a ''mission to find out birdman's name, and birdman's doctor's name. Doctors aren't even allowed to give patient info out anyways. So with all these questions unanswered, all I'm saying is why should this thread be about hyperacusis?

 

P.S. I also asked more questions that were also unanswered to see if Birdman's hyperacusis was a somatic condition or if it was cochlear issue, all unanswered.

[[Bi...]]

 

Hello Flarp,

 

The above post is not acceptable. We do not allow members to attack each other in this way.  Birdman is a long-time member of this forum.  This is from our Rules and Guidelines:

 

Be polite towards, and respectful of, your fellow Buddies. We do not tolerate attacks upon fellow members. Any account created for the purposes of causing arguments and/or ill-feeling will be banned.

 

megan918

Administrator

 

This account was made to find out about this possible method of botox for the rare condition of hyperacusis, not to attack anyone. I came here to look into the claim and was given what looks like false info, as the clinic denied applying botox. How would you react? I was accused of the utterly surreal mission of ''trying to find out Birdman's real name'' when I asked what they saw in Birdman's MRI, so it looked like deflecting away from the question. How else would you interpret it? The statement of seeing hyperacusis on an MRI makes little sense, actually it makes no sense, all while people on forums on hyperacusis have to struggle with this brutal condition with plenty of different etiologies, apparently that simple question is a mission to find someone's name. How would you react if you found out hyperacusis could be seen on an MRI and then told to shove off to phone a fake clinic and get accused of doxxing someone? Thus all I'm saying in the message is to say this thread applies to hyperacusis is beyond unacceptable, no matter how hard I tried to make it seem so, so I could bring back some good news to real people with this real condition over at other forums or facebook. Instead I had to close up the post with the ridiculous situation of having phoned a clinic that denied using botox and being told about ''hyperacusis seen on an MRI''. I actually asked maybe another condition was being seen on the MRI, and the hyperacusis was a subsidiary to that condition, but apparently that question was also me on a ''mission to find out birdman's name, and birdman's doctor's name. Doctors aren't even allowed to give patient info out anyways. So with all these questions unanswered, all I'm saying is why should this thread be about hyperacusis?

 

P.S. I also asked more questions that were also unanswered to see if Birdman's hyperacusis was a somatic condition or if it was cochlear issue, all unanswered.

 

I gave you the "Cold shoulder" since you where and still are creeping me out. Calling my docs office and giving them my name and procedure?  On a follow up visit they mentioned they got a call from a very pushy person talking about botox injections and speaking my real first name!  I'm guessing was you!

Keep in mind I brought this botox idea to their table. After a month of review the board agreed to try it.  Everyone at "HOUSE" knew it was experimental and it still is. 

They may be guarding it as a "TRADE SECRET" too or for many other reasons like an attorney digging for info to make a potential lawsuit. 

Until you pay the $275.00 fee and walk in the door and get seen for an appointment, you really will not get the right answers with a phone call.

 

It did work for me but still I do not want my "bed sheets" hung out for the world to see with my name on them. Just stay away from me and my doctor and do not PM me ever again! 

I work at a sensitive job and if they found out I was suicidal my security clearance would be revoked or worse!

 

I think anyone here at BB would feel uneasy if a member started calling their personal doctor and digging for procedural data and dropping the patients real name which I stupidly gave you in my PM's.  I really have to rethink how much access I give to people about my personal info. So far your the only person who used it this aggressively.  For that I am thankful that most people that I trusted here are actually "TRUST WORTHY".

 

GOOD DAY and GOOD BYE!

 

[[fl...]]

Wow, so much drama, maybe we're not as litigious in Fuentidueña de Tajo as in the USA.

 

Anyway, you didn't give me your real name. You used the same name as your forum nick, Birdman. Really? I'm not even going to follow you up on that one.  If people with hyperacusis find out a doctor, like, say, Silverstein is doing a reinforcement of the oval window procedure for hyperacusis, they call his office. You yourself told me to phone them. And I did just that given how practically the only other known reference to botox for H/T is a chinese paper from 5 years ago and a swedish paper from 15 years ago. And to top it off 99% of doctors out there think H/T doesn't exist or is just a brain thing that can't be addressed peripherally with tenotomy or botox.

 

Tell them good luck trying to patent it, trade secret really? As for getting sued by a lawyer, wtf? First of all botox has lots of off-label uses and second-of all you could be just pulling my leg again. And I'm just someone over at tinnitustalk and facebook groups on the subject with a perfectly verifiable history.

 

Why don't you at least tell me what they saw on MRI, a patulous eustachian tube? a stenotic tube? Or did you just have palatal myoclonus and conflate that condition with H and T? Link H to those conditions, you gave a very interesting angle to the H thing while all day long I have to put up with the entire universe saying it's a limbic thing or it's a cochlear thing. Or you just conflated palatal issues and veli palatini issues with real H. I suspect the eustachian tube is involved, but only because I've been reading 10-15 yr old historical conversations from desperate commentators at chat-hyperacusis, and because I read obscure papers on libgen and pubmed, who else do you think cares about it? Do you even know how rare these references are when people talk of hyperacusis? Aren't you aware of how valuable a reference to botox on the tube for H and T is when most docs administer all sorts of garbage straight to the cochlea destroying people's hearing in the process? When they can't even agree on what menieres disease is, and think H is either non-existent or an anxiety thing? How else did you expect me to react, oh a possible sane solution to H, it demysifies so much of the rubbish spoken about how the middle ear isn't involved in H, ''nah I'll just sit around and wait 20 years for some pen-pushing bureaucrat to do a second botox trial''.

 

Anyway, if one day your story turns out to be true, thanks a lot. If it turns out to be a joke or a profit-thing, here's the opposite of a thanks a lot for you. I guess we'll never know, as everyone knows MRIs are tracked by the CIA, so thanks or no thanks or whatever!

[[Bi...]]

Wow, so much drama, maybe we're not as litigious in Fuentidueña de Tajo as in the USA.

 

Anyway, you didn't give me your real name. You used the same name as your forum nick, Birdman. Really? I'm not even going to follow you up on that one.  If people with hyperacusis find out a doctor, like, say, Silverstein is doing a reinforcement of the oval window procedure for hyperacusis, they call his office. You yourself told me to phone them. And I did just that given how practically the only other known reference to botox for H/T is a chinese paper from 5 years ago and a swedish paper from 15 years ago. And to top it off 99% of doctors out there think H/T doesn't exist or is just a brain thing that can't be addressed peripherally with tenotomy or botox.

 

Tell them good luck trying to patent it, trade secret really? As for getting sued by a lawyer, wtf? First of all botox has lots of off-label uses and second-of all you could be just pulling my leg again. And I'm just someone over at tinnitustalk and facebook groups on the subject with a perfectly verifiable history.

 

Why don't you at least tell me what they saw on MRI, a patulous eustachian tube? a stenotic tube? Or did you just have palatal myoclonus and conflate that condition with H and T? Link H to those conditions, you gave a very interesting angle to the H thing while all day long I have to put up with the entire universe saying it's a limbic thing or it's a cochlear thing. Or you just conflated palatal issues and veli palatini issues with real H. I suspect the eustachian tube is involved, but only because I've been reading 10-15 yr old historical conversations from desperate commentators at chat-hyperacusis, and because I read obscure papers on libgen and pubmed, who else do you think cares about it? Do you even know how rare these references are when people talk of hyperacusis? Aren't you aware of how valuable a reference to botox on the tube for H and T is when most docs administer all sorts of garbage straight to the cochlea destroying people's hearing in the process? When they can't even agree on what menieres disease is, and think H is either non-existent or an anxiety thing? How else did you expect me to react, oh a possible sane solution to H, it demysifies so much of the rubbish spoken about how the middle ear isn't involved in H, ''nah I'll just sit around and wait 20 years for some pen-pushing bureaucrat to do a second botox trial''.

 

Anyway, if one day your story turns out to be true, thanks a lot. If it turns out to be a joke or a profit-thing, here's the opposite of a thanks a lot for you. I guess we'll never know, as everyone knows MRIs are tracked by the CIA, so thanks or no thanks or whatever!

 

You sound like a botox expert.  What do you need me or the house clinic for?

 

As the admin's here at BB  have pointed out SO many times "FACEBOOK IS NOT PRIVATE"

[[...]]

So I have been experiencing extreme fluctuations in my tinnitus and hyperacusis(sensitive hearing).  This includes ear pressure and some ear pain.  Would y'all consider these windows and waves?  I kind of didn't believe windows and waves applied to the auditory issues from my experience in research but I'm kind of hopeful thats what it is. I've had months at times where it's very manageable and then out of nowhere it acts up.  At times it feels like it goes into waves because of exposure to steady Noise even when it's not particularly loud.  Just wondering if anybody experiences this.  At its worst my tinnitus becomes multi tonal, a hiss and a ring.  Also sometimes a generator type sound.  And the hyperacusis when it's at it's worst...well life just sucks.  Any feedback would be sweet.

 

Thanks.

[[fl...]]

 

 

You sound like a botox expert.  What do you need me or the house clinic for?

 

As the admin's here at BB  have pointed out SO many times "FACEBOOK IS NOT PRIVATE"

 

Linking to this site from facebook isn't a violation of your privacy. I'm the one on facebook, not you.

 

Of course I'm not a botox expert, I need to know if it works for the sound vibrations I get from external sound, specifically, mostly, whenever a sound starts. Sure, the vibration follows external sound around for the duration of said sound, but it is most felt at the start. And that's a vibration on top of another permanent vibration tinnitus that's been around since my acoustic trauma, together with a high pitched tinnitus. For many years I was told it was H and misophonia, that it was all in the brain and CBT and TRT addressed it. That's a lie, and it took me time to be in a silent place where I could obsessively read about this issue for the past two years, and found out some people on a couple of forums that had done tenotomy. I tracked down one of the doctors that had done one of the tenotomies and followed him all the way to Greece to have a consultation. The issue has always been that while some people were happy with their tenotomy, there was another case that was worse off, perhaps temporarily perhaps not as we lost track of them, and a few other cases that may have been slightly worse off. So it was a hard decision and I haven't been able to do it. If I'm worse off than how I've been for a decade and a half, I wouldn't even be able to sleep or use a fan to drown out sounds in order to read things online.

 

So the issue with the woman on the chat-h forum that was worse off from tenotomy is nobody looked into whether she was worse off because her eustachian tube became more problematic, or cuz she got a perilymph fistula because of the operation, or a problem with the eardrum being floppier in the absense of a tensor tympani. I started off thinking this was all due to the acoustic reflex but then the more I read the more involved the eustachian tube seemed to be. Most doctors out there except the handful that saw the greek doctor lecture them, believe middle ear myoclonus has to be objectively diagnosable with tympanometry cogwheels or visible eardrum movement, or an acoustic reflex. Well it turns out the tension from the muscles could be tonic as opposed to clonic, in which case it wouldn't be seen, and it could be all pulling on the eustachian tube to either vibrate or to let in sounds that shouldn't be getting in, making the eardrum vibrate twice, hence making it thump to external sound. The eustachian tubes could be the problem on their own, causing an issue of ventilation that escapes me right now as I only recently started reading about eustachian tube disorders. Obviously I was shocked when I recently read that patulous dysfunction can come without autophony while causing ''hyperacusis'' to external sounds, and that only a handful of PET doctors worldwide seem to know that.

 

Botox applied to eustachian tube I've seen it both referenced as causing patulous eustachian tube and as curing it, so the issue gets even more confusing.

 

Since you're a successful case, obviously I need data from you like, how many months did you have the H before the botox application, and how many months since the botox was applied, is the H still gone? Was your eardrum vibrating like mine, or would external sound merely set it off and the thumps would go off on their own, just as bothersome as when the external sound was present? Do you have a high or low pitched tinnitus, or just vibrations and thumps, because that could be another indicator that differentiates the eustachian tube issues with merely middle ear ones. Are your vibrations equally bothersome in total silence as they are in response to sound? Was your condition objectively verifiable, cogwheel tympanometry, eardrum inspection, MRI etc? Is there any variability in how a doctor might apply botox up the nose onto the eustachian tube or is it all just simple?

 

From the house clinic if they're not experts and you nagged them to do it, then they wouldn't be of much use. I may have a doctor in Barcelona willing to do it if I nag him, I may not, I'll see, then again he may be retiring like the greek guy, and the new generation of doctors may be drinking so much useless international hyperacusis conference kool-aid about the brain central gain and CBT that there could be no one else doing it for decades. Either that or tenotomy, there's very little info about both.

[[Bi...]]

So I have been experiencing extreme fluctuations in my tinnitus and hyperacusis(sensitive hearing).  This includes ear pressure and some ear pain.  Would y'all consider these windows and waves?  I kind of didn't believe windows and waves applied to the auditory issues from my experience in research but I'm kind of hopeful thats what it is. I've had months at times where it's very manageable and then out of nowhere it acts up.  At times it feels like it goes into waves because of exposure to steady Noise even when it's not particularly loud.  Just wondering if anybody experiences this.  At its worst my tinnitus becomes multi tonal, a hiss and a ring.  Also sometimes a generator type sound.  And the hyperacusis when it's at it's worst...well life just sucks.  Any feedback would be sweet.

 

Thanks.

Hi Robk,

If the only symptom you have are in your ears then yes those are your waves and windows

I had all these symptoms and more.  In fact my whole withdrawal was 99% centered in my ears. 

It started with my vestibular system going hyper and I had horrific vertigo and I felt like the whole planet was on a 15 degree slant to the left.  It was hard to walk straight and one night a cop on the street gave me a Breathalyzer test.  I told him I just had an ear infection.

I put pillows under my chairs and sat sideways eating dinner and watching TV, my family thought I was nuts.

Then came the heat I was burning up but had no fever.  Then the psychosis started and I thought I was loosing my mind.  After that phase had passed the hyperacusis hit hard.  When I walked on gravel I could hear every grain of rock grinding together and a dog bark would make me jump.

Finally all the other S/X faded away and the tinnitus set in and that symptom was the most ruthless since it lasted for years and I have to take a few drugs to keep it under control.  It seems like it will never heal but it actually does but very slowly.

From all the people I have talked to here the general pattern is that the hyperacusis fades into tinnitus at a fairly fast pace which heals much slower

 

The ear pain and pressure is controlled by the mandibular division of the trigeminal nerve which controls the Tensor tympani muscle which keeps pressure on the ear drum to keep it in tune    https://en.wikipedia.org/wiki/Tensor_tympani_muscle

The tinnitus is controlled by a part of the brain sitting just below the trigeminal nerve called the dorsal cochlear nucleus    https://en.wikipedia.org/wiki/Dorsal_cochlear_nucleus   

Both these are areas of the mid brain are where the long term healing problems are harbored.

 

I hope you feel better soon.

 

Birdman

 

 

 

 

[[Bi...]]

 

 

You sound like a botox expert.  What do you need me or the house clinic for?

 

As the admin's here at BB  have pointed out SO many times "FACEBOOK IS NOT PRIVATE"

 

Linking to this site from facebook isn't a violation of your privacy. I'm the one on facebook, not you.

 

Of course I'm not a botox expert, I need to know if it works for the sound vibrations I get from external sound, specifically, mostly, whenever a sound starts. Sure, the vibration follows external sound around for the duration of said sound, but it is most felt at the start. And that's a vibration on top of another permanent vibration tinnitus that's been around since my acoustic trauma, together with a high pitched tinnitus. For many years I was told it was H and misophonia, that it was all in the brain and CBT and TRT addressed it. That's a lie, and it took me time to be in a silent place where I could obsessively read about this issue for the past two years, and found out some people on a couple of forums that had done tenotomy. I tracked down one of the doctors that had done one of the tenotomies and followed him all the way to Greece to have a consultation. The issue has always been that while some people were happy with their tenotomy, there was another case that was worse off, perhaps temporarily perhaps not as we lost track of them, and a few other cases that may have been slightly worse off. So it was a hard decision and I haven't been able to do it. If I'm worse off than how I've been for a decade and a half, I wouldn't even be able to sleep or use a fan to drown out sounds in order to read things online.

 

So the issue with the woman on the chat-h forum that was worse off from tenotomy is nobody looked into whether she was worse off because her eustachian tube became more problematic, or cuz she got a perilymph fistula because of the operation, or a problem with the eardrum being floppier in the absense of a tensor tympani. I started off thinking this was all due to the acoustic reflex but then the more I read the more involved the eustachian tube seemed to be. Most doctors out there except the handful that saw the greek doctor lecture them, believe middle ear myoclonus has to be objectively diagnosable with tympanometry cogwheels or visible eardrum movement, or an acoustic reflex. Well it turns out the tension from the muscles could be tonic as opposed to clonic, in which case it wouldn't be seen, and it could be all pulling on the eustachian tube to either vibrate or to let in sounds that shouldn't be getting in, making the eardrum vibrate twice, hence making it thump to external sound. The eustachian tubes could be the problem on their own, causing an issue of ventilation that escapes me right now as I only recently started reading about eustachian tube disorders. Obviously I was shocked when I recently read that patulous dysfunction can come without autophony while causing ''hyperacusis'' to external sounds, and that only a handful of PET doctors worldwide seem to know that.

 

Botox applied to eustachian tube I've seen it both referenced as causing patulous eustachian tube and as curing it, so the issue gets even more confusing.

 

Since you're a successful case, obviously I need data from you like, how many months did you have the H before the botox application, and how many months since the botox was applied, is the H still gone? Was your eardrum vibrating like mine, or would external sound merely set it off and the thumps would go off on their own, just as bothersome as when the external sound was present? Do you have a high or low pitched tinnitus, or just vibrations and thumps, because that could be another indicator that differentiates the eustachian tube issues with merely middle ear ones. Are your vibrations equally bothersome in total silence as they are in response to sound? Was your condition objectively verifiable, cogwheel tympanometry, eardrum inspection, MRI etc? Is there any variability in how a doctor might apply botox up the nose onto the eustachian tube or is it all just simple?

 

From the house clinic if they're not experts and you nagged them to do it, then they wouldn't be of much use. I may have a doctor in Barcelona willing to do it if I nag him, I may not, I'll see, then again he may be retiring like the greek guy, and the new generation of doctors may be drinking so much useless international hyperacusis conference kool-aid about the brain central gain and CBT that there could be no one else doing it for decades. Either that or tenotomy, there's very little info about both.

 

I do not like you very much but maybe you are just desperate for relief. 

I can tell you this.

The docs at house injected me in the TT with Lidocaine (without epinephrine) first to see how I feel. This made the TT go limp.  I felt instant relief. Then we went to phase 2,  BT.

 

It would be MUCH easier to fine a doc to Lidocaine your TT first since it's is safe and temporary test with effect lasting 3 hours only.  This way you can test it first and find out if you like the change.  The world sounds more BASS'Y to me now and high pitch tones are gone so I can't here song birds chirping but the sounds are coming back slowly since BT only works for 6 to 12 months in a muscle and shorter in soft tissue like lips.

I do not want to speak to you any longer on this topic.  You are blocked.  Go get a Lidocaine shot first, you would be crazy to go any further than that point as a logical first step.  My guess is you will LOVE the results like I did!  Instant relief, I actually cried when I could only here silence and muffled sounds.

 

WARNING:  After a BT injection in the TT  you will be 50% DEAF for 1 to 2 weeks after.  It's a very scary time but hearing comes back rapidly once it starts resolving!

 

[[Ca...]]

Wow, I think this is the longest I've seen this thread go with no activity  It's the best.

 

For those of us who are sick of waiting and have the extra cash lying around, has anyone thought about stem cell therapy to heal the brain? I'm also on tinnitustalk and that's been the "talk" these days. I know benzo T is a different beast but stem cell therapy can speed brain healing and vesibular damage. I've been trying to find info on it in regards to receptors but I did find some promising info in regards to depression and how it has a positive effect on neuronal growth.

 

I tend to plan for the worst and navigate to the most extreme solution.