Can't Take This... My Street Is Used as a Racetrack

[Geo]

MFs use my street as a racetrack almost every other day at my condition i cant bare to hear a light switch let alone a heavy duty machine like a racecar or motorbike.. This always happens at night and my ears are just taking a beating and my T and H are just far beyond extreme levels...

 

[Dr. Nagler]

MFs use my street as a racetrack almost every other day at my condition i cant bare to hear a light switch let alone a heavy duty machine like a racecar or motorbike..

Geo, that sounds terrible.

You have likely spoken about this on the board before, but I just don't recall reading it. Would you please explain exactly what your condition is, how it was diagnosed, and what you have done about it.

Thanks.

 

[Geo]

Geo, that sounds terrible.

You have likely spoken about this on the board before, but I just don't recall reading it. Would you please explain exactly what your condition is, how it was diagnosed, and what you have done about it.

Thanks.

From my ents they diagnosed me with tinnitus and hyperacusis and sinisitus wich i think is more tube dysfunction but they mis diagnosed me.. I cant stand my ears anymore they are so week from all the loud sounds if i just hear my mom talk it hurts so bad.. And to think i was almost falling alseep after trying for two hours.. Now my T just shot up again.. And this is the stuff i ment how my H just gets worse and prevents me from leaving all the punishment i take leaving in this neighborhood it never was like this when i firsy got H but as the months pass it just gets worse more and more sounds become visible and painful..amd we cant just up and move its a money situation... I honeslty just want to crash out and hope it somehwat dims down but it never does only a bit it dims down to lower sounds but higher louder exposure its most likeely damaged caused from my experiences... Lucky me.. And i developed reactive t from getting H again...idk what to do .. I wish i wasnt in this situation last time inwent to the doc just the drive alone was a nightmare got to the docs office and already was in pain and light headed..if it was just the T and not the other things that disable me i would go to a doc.. But also i find my case very uncommon..

I went to three ents two just took my money and said live wit it one was more helpful but felt annoyed i kept returning and we had a argument on my last visit so he let me go... Which was his fault he thinks im just a guy with faint t who cant move on with his life which is not the case.. I wish it was just that..this weird type of H i have is just a game changer i wish i just had t..

 

[Dr. Nagler]

I wish it was just that..this weird type of H i have is just a game changer i wish i just had t..

Geo, thank you for your explanation. Nobody should have to go through what you are going through.

I wish I had some sort of incredible diagnostic or therapeutic insight to point you towards your answer, but I do not. I very much do believe your answer is out there - but I do not know where to tell you to look. Anne-Mette Mohr is a clinician in Copenhagen who, when faced with the toughest of cases sometimes says, "You have to make peace with it in order to have peace from it." I do not know if that applies to your situation or not, but I offer it to you nonetheless.

I will keep a good thought for you.

 

[Danny Boy]

From my ents they diagnosed me with tinnitus and hyperacusis and sinisitus wich i think is more tube dysfunction but they mis diagnosed me.. I cant stand my ears anymore they are so week from all the loud sounds if i just hear my mom talk it hurts so bad.. And to think i was almost falling alseep after trying for two hours.. Now my T just shot up again.. And this is the stuff i ment how my H just gets worse and prevents me from leaving all the punishment i take leaving in this neighborhood it never was like this when i firsy got H but as the months pass it just gets worse more and more sounds become visible and painful..amd we cant just up and move its a money situation... I honeslty just want to crash out and hope it somehwat dims down but it never does only a bit it dims down to lower sounds but higher louder exposure its most likeely damaged caused from my experiences... Lucky me.. And i developed reactive t from getting H again...idk what to do .. I wish i wasnt in this situation last time inwent to the doc just the drive alone was a nightmare got to the docs office and already was in pain and light headed..if it was just the T and not the other things that disable me i would go to a doc.. But also i find my case very uncommon..

I went to three ents two just took my money and said live wit it one was more helpful but felt annoyed i kept returning and we had a argument on my last visit so he let me go... Which was his fault he thinks im just a guy with faint t who cant move on with his life which is not the case.. I wish it was just that..this weird type of H i have is just a game changer i wish i just had t..

Are you still on keppra geo? Have you upped the dosage?

 

[lapidus]

I wish I had some sort of incredible diagnostic or therapeutic insight to point you towards your answer, but I do not.

I'm confused, I thought you treated H. Earlier on this site you've claimed that H is not only treatable but curable.

 

[Dr. Nagler]

I'm confused, I thought you treated H.

I do.

Earlier on this site you've claimed that H is not only treatable but curable.

Almost all cases of hyperacusis are treatable, and many are indeed curable.

But here's the thing. I'm talking here about properly diagnosed hyperacusis; not some other sort of decreased sound tolerance or sound sensitivity problem that somebody (ENT or otherwise) has incorrectly labeled as hyperacusis.

Let me tell you about three patients. And then I will get back to Geo.

• The first patient is a gentleman I saw a few months ago in my clinic who presented with severe hyperacusis. He found that he could not go to restaurants because of the noise of the dishes and silverware. Indeed he had difficulty tolerating his wife's voice as well as the sound of her walking down the hall in shoes. He saw an ENT and an audiologist in the city where he lived and was told that his LDL (loudness discomfort level) testing was markedly abnormal. He was therefore diagnosed with hyperacusis. He then did a web search and found a support board devoted specifically to hyperacusis. He followed all the suggestions of the well-intentioned people at that site, but found no relief at all. He was worried. He was desperate. His social life was restricted because of his sound sensitivity. And his marriage had become testy. The interesting thing to me when he called me to make an appointment was that his voice was rather loud. Most severe hyperacusics speak in relatively soft tones - so already something didn't seem quite right. Additionally, my own voice is fairly loud, and he had no difficulty tolerating it at all. Long story short, his audiogram was reasonably consistent with age, but on very careful testing there was a small band of frequencies where he displayed a severe threshold shift, a band located between the discrete frequencies that are typically tested in an audiogram. Moreover, when his LDL testing was repeated with very careful instruction using 1 dB intervals instead of the typical 5 dB intervals and explaining to the patient that the test could be stopped at any time at all upon his request (thereby eliminating the anxiety that many hyperacusics experience during such testing), his LDLs were found to be completely normal. Furthermore, upon careful questioning, he described absolutely nothing suggestive of the type of visceral response one sees in misophonia. Bottom line: this patient did not have hyperacusis at all; he was experiencing marked recruitment in a relatively narrow band of frequencies. He was fitted with hearing aids using compression at the appropriate frequency band, and he is once again enjoying life to the fullest. This patient did not need desensitization. He did not need some sort of music protocol. He most certainly did not need TRT. And he absolutely did not need me. What he needed was a proper diagnosis and targeted treatment based upon that diagnosis.

• The second patient is a high school junior who was a very good student, but who had a bit of an odd look (as many of us do). Unfortunately as the end of the school year approached, he was left without a date for prom. (In his school the tradition was that the girls asked the boys to prom.) He became sad and depressed. He did not want to go to class. And his grades consequently began to suffer significantly at the end of the year. His parents took him to a number of therapists to no avail. They took him to a neurologist who ran a number of tests and scans. Because of his somewhat odd look, he even wound up in the office of a geneticist! Finally somebody thought to ask him what it was specifically that caused him to not want to go to class. The answer he gave, which was so obvious to him that he never before thought to mention it, was that the classroom was too loud. Not only that, the gym was too loud, the hallway was too loud, essentially everything was too loud. His parents brought him to my clinic, and we did careful LDL testing. We also wanted to compare his LDL curve to his audiogram curve to be sure that we weren't dealing with some other form of decreased sound tolerance. Bottom line: this patient's problem was uncomplicated severe hyperacusis (with LDLs in the 50s); the prom and other social issues were strictly coincidental. He was treated with a straightforward desensitization protocol, and within 10 weeks his LDLs were in the 90-95dB range. He attended summer school to make up for his missed class work. And a psychologist helped him greatly with his insecurities, none of which were related to his hyperacusis. He graduated the following year and went to a very fine college. He is now a successful businessman, fully active in his church and community, with a wife and young child of his own.

• The third patient is a female in her mid-30s who lived in the Midwest. She presented with a six-month history of increasingly loud ringing in her left ear. She had been to three ENTs, all of whom told her that she had tinnitus and had to learn to live with it. She became distracted, distraught, and depressed. She tried a number of different medications and treatment protocols all to no avail. In desperation she flew all the way to Atlanta to see me. (Talk about scraping the bottom o9f the barrel!) I took a history and reviewed all of her records. The next thing I did was examine her (which is sort of what doctors do!) I looked in her ears, and then I listened to her ears with a stethoscope. I also listened to her neck and all over her head with a stethoscope. Nothing particularly noteworthy in any of that. Finally I inserted a small electronic amplifier into both ear canals and listened again. It was at that point that I was able to detect a sound in her left ear similar to the sound she was describing. It was a venous hum, the sound of turbulent blood flow coursing through the low-pressure venous system (as opposed to a bruit, the sound of turbulent blood flow in a high-pressure arterial system). I turned my attention again to her neck and in a very quiet room was able to trace the origin of the sound to a point high up in her left jugular system. I asked one of my colleagues in vascular radiology to do a selective venous jugular study. He found a tight stenosis, which he gently dilated up over two sessions. And she was cured! Although she had been told by three different ENTs that she had tinnitus, as it turned out she did not have tinnitus at all. What she had was a somatosound emanating from her distal jugular venous system. (And the very last thing she needed was the TRT that she came to me for originally!)

OK, so what does all this have to do with Geo? Well Geo, who lives all the way on the other side of the country, is obviously suffering greatly. Incredibly so. He has seen three ENTs, all who have told him that he has tinnitus and hyperacusis. I'm not about to argue with that assessment; indeed it might be 100% spot on. It probably is! Or it might be 100% wrong. I have no idea. The very best I can do for Geo under such circumstances is listen to his story, be as sympathetic as possible, share Anne-Mette Mohr's wisdom, and tell him that I will keep a good thought for him. Which is precisely what I did in Post #4 of this thread. It's called support. We do that here.

 

[PaulBe]

Dr Nagler. So much hinges on correct diagnosis, yet getting it from well paid practitioners seems like finding the lost gold of the Incas. Your case number one sounds a lot like my situation, except I don't think any specialist took any kind of history or listened to what I was trying to say. As soon as they heard the word tinnitus they wrote me off, even though I pointed out as much as I could that sound intolerance was my biggest concern, and I couldn't give a damn about the tinnitus. I was variously told that I "needed to see a psychologist to work out why I had "good" days", "there was no treatment for that, and maybe I'd had a stroke" (no referral on mentioned), or that "we ENT's aren't very good at this sort of thing" and finally: "Its the kind of thing that just happens at his age". That's my experience of the practice of Medicine here in Northern Australia (see-a-psych guy was in Melbourne, where I did see Myriam Westcott, which, while diagnostically wasn't a lot of help due to time constraints...I live up the other end of the country, she did at least settle my mind that someone listened to what I was saying). I'm an ICU Nurse of 20 years standing. I've been on the receiving end of Medical arrogance often enough. You can perhaps imagine the anger I've felt and continue to feel towards Medicine as a discipline right now.

 

[Dr. Nagler]

Dr Nagler. So much hinges on correct diagnosis, yet getting it from well paid practitioners seems like finding the lost gold of the Incas.

Well, yes. A lot does depend on a correct diagnosis. I absolutely agree with you.

That's my experience of the practice of Medicine here in Northern Australia (see-a-psych guy was in Melbourne, where I did see Myriam Westcott, which, while diagnostically wasn't a lot of help due to time constraints...I live up the other end of the country, she did at least settle my mind that someone listened to what I was saying).

Seems to me that you saw one of the very best in Myriam Westcott. I do not understand the "time constraint" issue. If it were me, I'd have done whatever was necessary to make the time!

I'm an ICU Nurse of 20 years standing.

Then you know the importance of a proper work-up, which can occasionally take some time!

I've been on the receiving end of Medical arrogance often enough.

Me too! I have definitely been on the receiving end of medical arrogance When that happens, I fire the doctor and move on.

In fact I have myself been accused of being arrogant - but never by folks who have taken the time to actually get to know me! I am only accused of being arrogant on the web, which is a unidimensional representation of a three-dimensional reality! But I digress.

You can perhaps imagine the anger I've felt and continue to feel towards Medicine as a discipline right now.

Yes I can imagine. My question to you is ... what good has that anger done you? Perhaps you might channel it elsewhere?

 

[PaulBe]

Seems to me that you saw one of the very best in Myriam Westcott. I do not understand the "time constraint" issue. If it were me, I'd have done whatever was necessary to make the time!

Its was the 6000 mile drive (I didn't know if it was safe to fly), and I still had to get back and work. I had thought I could pick up follow-up here in the North as Myriam has students of hers here. We did continue correspondence by Email. Unfortunately there was no quality follow-up, only Neuromonics salespeople with no counseling skills or inclination. I did at least find a very good GP. I will say, Myriam's education and approach has been the thing that kept me going, and twelve months later its still what I refer back to as the most sensible set of strategies that have given me some results. I also understand why you speak so well of her. She placed a floor under me that no-one else to that time could even see was missing.

Yes I can imagine. My question to you is ... what good has that anger done you? Perhaps you might channel it elsewhere?

You are of course correct, and nowadays its getting harder to maintain the rage, because its ultimately pointless, I know. I guess channeling it into educating others about this condition is a good start. ICU Nurses in Australia are the noisiest, shoutiest bunch of people you will find.

Me too! I have definitely been on the receiving end of medical arrogance When that happens, I fire the doctor and move on.

One of the problems of living rural is the lack of availability of good medicine, and the cost of traveling all the time makes it harder still. There are three ENTs here. No 1 is "there's no treatment for that...maybe you've had a stroke (no follow-up plan), no 2 is clonazepam, clonazepam and more clonazepam (actually, could be nice), and no. 3 thinks the surgical process ends when the last stitch is cut. I'm not seeing any ENT until I locate one in Australia that has some interest in the topic. I'm waiting for that person to be born, then its just thirty more years and I'll be set.

 

[Joe P. Tamborra]

Hey Geo, Sorry to hear your having so much trouble. I will take some time this evening and pray
for you and myself to get some relief this Sunday. I had a good week in general with my tinnitus;
however today mine is loud and afflicting. I cannot give you any medical advice, but I will say when
I cry out to God for help, He always helps. Make your appeal to the Almighty and see what happens.
Let me know if Sunday is a good day for you. Praying for intervention.

 

[Danny Boy]

Hey Geo, Sorry to hear your having so much trouble. I will take some time this evening and pray
for you and myself to get some relief this Sunday. I had a good week in general with my tinnitus;
however today mine is loud and afflicting. I cannot give you any medical advice, but I will say when
I cry out to God for help, He always helps. Make your appeal to the Almighty and see what happens.
Let me know if Sunday is a good day for you. Praying for intervention.

God isn't gonna cure him Joe....You can beg and beg, but there's no invisible man in the sky.

 

[Carm]

Hey Geo, Sorry to hear your having so much trouble. I will take some time this evening and pray
for you and myself to get some relief this Sunday. I had a good week in general with my tinnitus;
however today mine is loud and afflicting. I cannot give you any medical advice, but I will say when
I cry out to God for help, He always helps. Make your appeal to the Almighty and see what happens.
Let me know if Sunday is a good day for you. Praying for intervention.

You can appear so delusional it hurts. Do you see it yourself? It takes a small mind to believe in those made up stories.

MFs use my street as a racetrack almost every other day at my condition i cant bare to hear a light switch let alone a heavy duty machine like a racecar or motorbike.. This always happens at night and my ears are just taking a beating and my T and H are just far beyond extreme levels...

Can you move away? Consider moving somewhere quieter?

 

[Joe P. Tamborra]

Carm, the bible is a history book. The accounts in the bible are literal events
that took place in past generations of people.

 

[astronomer]

told you guys , someone is going to preach the gospel all over this forum !

 

[Mark Beehre]

Someone offers to pray for someone else and people who aren't even associated with either person take issue with that. I like what @Joe P. Tamborra just did, it was kind and it was thoughtful. It showed care and consideration. However, what @Danny Boy , @Carm and @astronomer just said was rude and offensive. If you want respect how about being respectful. Great way to hijack a thread as well, I am sure the OP appreciates that.

 

[Tamar]

Back to Geo... Arguments about religion or philosophy have no place here. We all understand Geo's emotional frustration. These problems are so unique and having both T and H is so intolerable sometimes. I personally have 3 super loud noises in my head 24/7 and none can be masked. Honestly, it's really unbelievable and sometimes I'm impressed that I manage to live a normal life. Of course sometimes I want to tear my hair out. I really do believe that my friends and family have no clue as to what I it sounds like in my head. Their jaws would drop! My ears are in pain with a full feeling and I'm super sensitive to sound yet I'm hard of hearing... It's plain annoying. I really feel for you Geo. I hope you can get some relief. I'm interested in trying hearing aids soon but I'm avoiding it because I'm afraid I will run into all the sales pitches and that it may be difficult to select the right one. I know nothing about hearing aids and don't really understand my condition very well. Anyway. I hope we all get relief.