AM-101 Clinical Trial — Participants Updates and Discussion

[AlexSongitus]

So after writing that update Saturday, and having not experienced a single day of silence my third week, I just want to give a quick heads up and say that yesterday I once again woke up with the low centralized sound, and I was surprised with the gift of silence again last night.

I didn't even realize when that happened exactly, because it was so low throughout the day I didn't pay much attention, but at some point around 10pm, I realized I was in a completely silent room, and I couldn't hear my T at all. It dropped down to complete silence. I stayed up as long as possible, and it stayed silent. I milked it for all it was worth. Last night, at first I only slept about 4 hours. When I woke up, I was still in silence. This is now the 2nd time since the injections that I went to bed in silence and also woke up in silence. Then I fell back asleep for a couple more hours and it was back very low, a 1 at most and so far it's staying that way.

Kind of regret that decision to fall back asleep, just to see if it would have led to complete silence on back to back days. But part of the reason I went back to sleep is that I don't fear it coming back so much like I used to when it's mainly been this low centralized sizzle head sound. As long as the hissing stays away, I'm good. Either way, week 4 is off to a good start.

I also want to add that yesterday was a stressful day for me. Well apparently my T doesn't care if I am stressed because after that I had complete silence. Go figure. The only thing I can think of is it must mean it's still being caused in my ears, so stress probably wouldn't have much of an effect if the problem is there. That would also explain the instant reaction I had to Lidocaine and suctioning during the injections and the changes from hissing in the ears to centralized sound in the head.

 

[liquefact]

Well my friend @AlexSongitus, i'm very glad that you're experiencing silence again. This is great news, enjoy it while you have it.

The only suggestion from me would be, do not obsess about it, because you'll still have some relatively bad days. Slowly stop gauging the T and do not let these up's and down's change your attitude that much. Enjoy the silence but do not be upset if you're ringing.

Cheers mate.

 

[AlexSongitus]

Well my friend @AlexSongitus, i'm very glad that you're experiencing silence again. This is great news, enjoy it while you have it.

The only suggestion from me would be, do not obsess about it, because you'll still have some relatively bad days. Slowly stop gauging the T and do not let these up's and down's change your attitude that much. Enjoy the silence but do not be upset if you're ringing.

Cheers mate.

Yeah I plan on following through to the end with this last week of tracking 4 times a day just to complete my 1 month report, and then I will just do the bare minimum AM-101 requires and stop paying this much attention to it. But yes I am definitely obsessing.

Oh yeah, it dropped down to silence again! It's 9pm here now, and it happened in the past couple of hours after another very low T day that just gradually faded away. I'm in silence on back to back days although I also spend a lot of hours in a strange type of near silence before it drops away completely. And sometimes it fluctuates right on this edge. Very difficult to describe the sensation.

There seems to be absolutely no pattern to anything. About as random as it gets, especially after last week.

How have you been? Any changes or progress?

 

[TJohns]

Keep on keeping on @AlexSongitus & @liquefact I'm out of the am101 because of an ear infection. Im hoping you guys get to a good place with your T and enjoy your new lives. R

 

[liquefact]

Hi folks,

Let me give an update 10 days after the last injection. T went back to pre-injections level 2-3 days ago.

Bad thing is, i still have occasional spikes and at this point feel like it's very unlikely for me to have an improvement due to AM101. It's been 6 months since onset and the T has centralized in brain i guess.
Good thing is, even though i don't have any improvement and my head buzzes, i'm doing a better job ignoring it.

I'll decide to jump on RTG bandwagon or not soon.

 

[Charlie396]

Hey guys, been a while since any updates, I wanted a lot of time to pass before I gave a real assessment of this process. So my round 1 is about to end, injections were first week of February. I got the god damn placebo, I'm certain of it. I've had zero progress or changes at all, but not just because of that, but because I'm pretty sure they made a conscious decision to give it to me.

First of all, this whole thing is not nearly as organized as people think. I guess different clinics have different procedures. Some ask for full medical record access, mine didn't. So flash forward to me sitting in the chair waiting for the injection after being numbed. In casual conversation the ENT asks me how my T came about, I tell him and immediately he stops everything 'whoa wait a minute, I'm not sure you qualify' he says, seconds after the god damn numbing agent was put in my ear. My T was caused by a sudden burst to one ear, the T started in one ear and in a day went to both. He didn't like hearing that, he said it should have been constant, not changing, even though it was only a day and the sound is now in both ears. This was documented since day one when I first told the coordinator, but I guess the people running this two bit operation doesn't bother telling the person jamming a needle into your ear these details.

So after he says this, he called my site coordinator, he leaves the room, my girlfriend who was in the room during the entire process follows him out in the hall and listens behind a corner, he's on the phone with the site coordinator, he then calls an Auris office here in America and tells them the situation. He proceeds to write down something on a piece of paper and says 'ok, so I give him this one?' The drugs were in individual viles with different serial numbers. So was no randomness to it, they decided to give me the placebo after the god damn ENT told them my story was sketchy.

I don't have much hope for round 2, but let's see what happens

 

[Poyraz]

Hey guys, been a while since any updates, I wanted a lot of time to pass before I gave a real assessment of this process. So my round 1 is about to end, injections were first week of February. I got the god damn placebo, I'm certain of it. I've had zero progress or changes at all, but not just because of that, but because I'm pretty sure they made a conscious decision to give it to me.

First of all, this whole thing is not nearly as organized as people think. I guess different clinics have different procedures. Some ask for full medical record access, mine didn't. So flash forward to me sitting in the chair waiting for the injection after being numbed. In casual conversation the ENT asks me how my T came about, I tell him and immediately he stops everything 'whoa wait a minute, I'm not sure you qualify' he says, seconds after the god damn numbing agent was put in my ear. My T was caused by a sudden burst to one ear, the T started in one ear and in a day went to both. He didn't like hearing that, he said it should have been constant, not changing, even though it was only a day and the sound is now in both ears. This was documented since day one when I first told the coordinator, but I guess the people running this two bit operation doesn't bother telling the person jamming a needle into your ear these details.

So after he says this, he called my site coordinator, he leaves the room, my girlfriend who was in the room during the entire process follows him out in the hall and listens behind a corner, he's on the phone with the site coordinator, he then calls an Auris office here in America and tells them the situation. He proceeds to write down something on a piece of paper and says 'ok, so I give him this one?' The drugs were in individual viles with different serial numbers. So was no randomness to it, they decided to give me the placebo after the god damn ENT told them my story was sketchy.

I don't have much hope for round 2, but let's see what happens

Man! I think this thing is gonna be a huge disappointment. SF0034 better come soon.

 

[Alue]

Hey guys, been a while since any updates, I wanted a lot of time to pass before I gave a real assessment of this process. So my round 1 is about to end, injections were first week of February. I got the god damn placebo, I'm certain of it. I've had zero progress or changes at all, but not just because of that, but because I'm pretty sure they made a conscious decision to give it to me.

First of all, this whole thing is not nearly as organized as people think. I guess different clinics have different procedures. Some ask for full medical record access, mine didn't. So flash forward to me sitting in the chair waiting for the injection after being numbed. In casual conversation the ENT asks me how my T came about, I tell him and immediately he stops everything 'whoa wait a minute, I'm not sure you qualify' he says, seconds after the god damn numbing agent was put in my ear. My T was caused by a sudden burst to one ear, the T started in one ear and in a day went to both. He didn't like hearing that, he said it should have been constant, not changing, even though it was only a day and the sound is now in both ears. This was documented since day one when I first told the coordinator, but I guess the people running this two bit operation doesn't bother telling the person jamming a needle into your ear these details.

So after he says this, he called my site coordinator, he leaves the room, my girlfriend who was in the room during the entire process follows him out in the hall and listens behind a corner, he's on the phone with the site coordinator, he then calls an Auris office here in America and tells them the situation. He proceeds to write down something on a piece of paper and says 'ok, so I give him this one?' The drugs were in individual viles with different serial numbers. So was no randomness to it, they decided to give me the placebo after the god damn ENT told them my story was sketchy.

I don't have much hope for round 2, but let's see what happens

My site location and trial coordinator were very professional, but I still think I got the placebo at this point. I'm pretty sure the trial coordinator was hoping I would get the real drug too. What they do is call in and Auris randomizes the patient then directs the pharmacist to get whichever vile. Only the pharmacist should know which is the real drug and which is the placebo, the trial coordinator and the doctor are not given that information.

Is it possible he just wanted to make sure that you qualify before asking for them to randomize you and direct which vial to select? That is the procedure on your last day of the screening period: make sure the patient meets all the criteria, randomize, then administer injections. You may well have gotten the placebo, but for it to be intentional they would have to throw out your results, I can't see them spending all this money then jeopardizing the study by not making it double blind. It would be more cost effective and less risky for them to kick you out at that point if they didn't like what they heard.

 

[AlexSongitus]

Well it's been a month for me.


My site location and trial coordinator were very professional, but I still think I got the placebo at this point. I'm pretty sure the trial coordinator was hoping I would get the real drug too. What they do is call in and Auris randomizes the patient then directs the pharmacist to get whichever vile. Only the pharmacist should know which is the real drug and which is the placebo, the trial coordinator and the doctor are not given that information.

Is it possible he just wanted to make sure that you qualify before asking for them to randomize you and direct which vial to select? That is the procedure on your last day of the screening period: make sure the patient meets all the criteria, randomize, then administer injections. You may well have gotten the placebo, but for it to be intentional they would have to throw out your results, I can't see them spending all this money then jeopardizing the study by not making it double blind. It would be more cost effective and less risky for them to kick you out at that point if they didn't like what they heard.

You took the words right out of my mouth, with the added information of how they do it. I was just about to post that I'm going to ask the procedure since my study center has been so open and forthcoming with everything.

That's the understanding I came to as well @Charlie396 . Doctors wouldn't have viles labeled with placebo and real AM-101, even by serial numbers, in their offices since it's a double blind study. They might have viles with real AM-101, for round 2, and a "study" vile, unknown to them what it contains. They are not allowed to know. So if anything, it would have to be AM checking the serial number, and then finding out what is in the vile while on the phone and then telling the doctor what to give. Because I just can't see a conversation that goes...."go ahead, give this guy the placebo, because he's going to mess up our numbers doc!".

I'm going to give a bit of a backround on my center . Without even knowing, I lucked out into having my injections done by one of the doctors that is at the top of the AM-101 Q&A of this forum and from what I have been told, a pretty renowned ear surgeon in the US. The words "walking genius" were mentioned on multiple occasions by the research assistants. They were very professional in how they treated me. Very open. Very forthcoming. And I had the privilege of picking his brain quite a bit, and I usually have to restrain myself from swamping him with a million questions. He and his clinic has been part of this AM 101 study since the get go and will continue doing so in the future. So he is very much one of the more knowledgeable doctors involved in this so I'd like to think if any doc would have any clue, he would be one of them. I just personally don't believe he would associate himself and his practice's good name with anything shady. Not to mention it just makes no sense, when so many members are getting turned away over this and that, that they would keep you in and give you a placebo. And, like @Alue said, they were also all crossing their fingers and hoping for me to get the real thing.

What he did flat out tell me though, is that they just do not know what you get. Not even after 3 months. He can't tell me. They don't tell them. The research assistants on separate occasions echoed the same information. The 2nd doctor that performed injections also repeated this. They don't have marked viles laying around when it comes to whatever they get for the study that they could figure out what they contain, not even by serial numbers. There aren't even any signs that he could figure out what he gave you, including numbness or anything like that. There is only one way for anyone to find out what you got, and that is due to a medical emergency where they break open your file. And another thing, when I initially saw him for my appointment, I was on Prednisone and told him about me experiencing silence my 1st and 3rd day. He didn't really seem to be sold that mine responded so well to Prednisone, and thought there was a chance mine could also be intermittent T, and actually made me wait 30 days to make sure my T isn't intermittent. Is it possible your doc was also concerned over something like this?

It's possible he just wasn't very well informed of all the criteria when it comes to trauma due to perforation and he called to double check and they ok-ed it. Even at my center the other doctor and the primary doctor don't see eye to eye on everything, including length of effectiveness of AM-101 since onset, theories of T, so it's not unheard of for one of the doctors to have different understandings of something like criteria, even in the same study center. Especially, since they mainly do a check up and administer the injection, while the research department handles everything else during the screening. And who knows, "So I give him this one", if your girlfriend heard correctly in the first place, could have just also meant, "I still go ahead with this one", or "I still give him this round". It's a big claim to make off of a phrase your girlfriend thinks she heard without any context of the rest of the conversation.

Medical malpractice isn't impossible, but all I know is if you really believe what you are saying, then basically you are claiming AM and a doctor are cooperating into falsifying a study. And you just had a doctor that willingly gave you a placebo and risked your health to make it look better for this company. Personally if I believed that, I wouldn't go back to that doctor, and sure as heck wouldn't go back for round 2.

 

[Alue]

Even at my center the other doctor and the primary doctor don't see eye to eye on everything, including length of effectiveness of AM-101 since onset, theories of T, so it's not unheard of for one of the doctors to have different understandings of something like criteria, even in the same study center.

I'm curious what their thoughts were on the length of effectiveness since onset.

 

[AlexSongitus]

I'm curious what their thoughts were on the length of effectiveness since onset.

The principal doctor, and my personal doctor, who is more involved in the research, believed it's still quite effective even during round 2, even after 4 months. The other believed it's really more up to 3 months, and beyond that you are kind of stuck, and the drug is not as effective....with an exception. My doctor was far more optimistic, even going as far as saying things like "oh you mean if you still have it in 3 months?". And I was like yeah, if it's still present and I get the placebo now, what are the chances of it still being effective? He said yeah, for sure. He seemed very confident. Although, I will say that even in his confidence, my doc stressed repeatedly that this is just 1 theory of how to treat T. One of many competing theories. The other doc simply believed it has a lot to do with fluctuations and seemed to be more of a believer in the 3 month time frame. He was of the opinion that the more it fluctuates, the better it responds to treatment.

That's why I ask if you are certain you haven't at least heard any type of shape changes. Your volume doesn't necessarily have to fluctuate, but if you are getting tone, shape, pattern changes, it's still fluctuating.

Oh yeah one more thing they both agreed on. They both have a lot of experience with Dexamethasone and Lidocaine injections. They do them frequently. And they both believed this is far better than that. My doc could have offered that to me, when I first saw him, about 10 days in, but he said to me they are very expensive, believed even 10 days after onset was kind of late, and that AM-101 was better. He preferred to make me wait 30 days to make sure my T isn't intermittent for AM-101 than to give me dex injections 10 days in. I too had paranoid thoughts and wondered at times if that wasn't because he wanted to fill some quota, but when I heard the 2nd doc echo the same sentiments, I felt better about it.

 

[Alue]

The principal doctor, and my personal doctor, who is more involved in the research, believed it's still quite effective even during round 2, even after 4 months. The other believed it's really more up to 3 months, and beyond that you are kind of stuck, and the drug is not as effective....with an exception. My doctor was far more optimistic, even going as far as saying things like "oh you mean if you still have it in 3 months?". And I was like yeah, if it's still present and I get the placebo now, what are the chances of it still being effective? He said yeah, for sure. He seemed very confident. Although, I will say that even in his confidence, my doc stressed repeatedly that this is just 1 theory of how to treat T. One of many competing theories. The other doc simply believed it has a lot to do with fluctuations and seemed to be more of a believer in the 3 month time frame. He was of the opinion that the more it fluctuates, the better it responds to treatment.

That's why I ask if you are certain you haven't at least heard any type of shape changes. Your volume doesn't necessarily have to fluctuate, but if you are getting tone, shape, pattern changes, it's still fluctuating.

I agree with the fluctuations being a good sign. Unfortunately I haven't really seen any, and if there have been they have been so gradual that I haven't noticed. I tried asking if there is any diagnostic criteria for telling if tinnitus is acute or chronic besides time, but couldn't get a straight answer. I guess nobody knows. But it would make sense to me that some people move from acute to chronic faster than others depending on the individual and the underlying cause.

 

[AlexSongitus]

I agree with the fluctuations being a good sign. Unfortunately I haven't really seen any, and if there have been they have been so gradual that I haven't noticed. I tried asking if there is any diagnostic criteria for telling if tinnitus is acute or chronic besides time, but couldn't get a straight answer. I guess nobody knows. But it would make sense to me that some people move from acute to chronic faster than others depending on the individual and the underlying cause.

Yea but if you say yours has been so constant from the get go, basing it off that, would mean it became permanently ingrained since onset. So wouldn't that mean direct brain stem damage, with no hearing cells damage? What did the audio test show?

 

[Alue]

Yea but if you say yours has been so constant from the get go, basing it off that, would mean it became permanently ingrained since onset. So wouldn't that mean direct brain stem damage, with no hearing cells damage? What did the audio test show?

No detectable hearing loss in the normal range (up to 8kHz). I have not had and ABR test, was going to get one but now I'm not sure if I'll be able to. I don't know if that would tell me anything beneficial anyways.

 

[bill 112]

Yea but if you say yours has been so constant from the get go, basing it off that, would mean it became permanently ingrained since onset. So wouldn't that mean direct brain stem damage, with no hearing cells damage? What did the audio test show?

Hey Alex,sorry to be butting in on your conversation but has Am-101 made a big difference to your T?Just wondering how it's doing lately?Friend of mine is considering going for it but wants to see more positive reports,seen a few but nothing overwhelming.Cheers

 

[AlexSongitus]

No detectable hearing loss in the normal range (up to 8kHz). I have not had and ABR test, was going to get one but now I'm not sure if I'll be able to. I don't know if that would tell me anything beneficial anyways.

That is interesting. We have heard that the brain fibers are even more fragile than the hair cells and can be just as easily damaged without hearing loss. If that's the case, then you would think that AM-101 wouldn't do much for it, because it's really designed to deal with glutamate inhibition. I hope that isn't the case for you, and I agree you have good reasons to be concerned, but I just don't think it's good to try to obsess to that point because going off of the consistency of the sound is not a good way to be certain. It still could be damage in higher frequency ranges. At this point it's just makes most sense to take the round 2 to be sure you didn't get the placebo and just see what it does.

Hey Alex,sorry to be butting in on your conversation but has Am-101 made a big difference to your T?Just wondering how it's doing lately?Friend of mine is considering going for it but wants to see more positive reports,seen a few but nothing overwhelming.Cheers

Yes overall, it's been significant. Week 1 was good, low T and a couple of days of silence, week 2 was great, about 4 days that included silence, week 3 was a set back, with just low T but no silence, and the past 4 days have been great, silence on back to back days. Today's low again. Probably the best stretch has been the past 4 days so far. Started Saturday with very low T, then Sunday it dropped to silence by evening, again yesterday, and today it's very low again. Probably the biggest improvement other than experiencing silence, is that even when my T is present it changed to a low sizzling head centralized sound, as opposed to the hissing that came from my ears. That's been the best part really because it just doesn't annoy me anywhere as much when its like this as opposed to the hissing. I heard the hiss come back last week on 2 or 3 occasions, and thankfully it went away again, but for the most part it's been gone since the injections. I either have a centralized sound, or it drops down to silence. This centralized sizzle only started happening after AM-101. Never heard it before. It still fluctuates, but never above my baseline, more between very low T and low T. So the easiest thing to notice, is that the hissing was present 100% of the time before, and now its been more like 5% of my awake time. And obviously the repeated days that included hours and hours of silence until I went to bed.

 

[Alue]

That is interesting. We have heard that the brain fibers are even more fragile than the hair cells and can be just as easily damaged without hearing loss. If that's the case, then you would think that AM-101 wouldn't do much for it, because it's really designed to deal with glutamate inhibition. I hope that isn't the case for you, and I agree you have good reasons to be concerned, but I just don't think it's good to try to obsess to that point because going off of the consistency of the sound is not a good way to be certain. It still could be damage in higher frequency ranges. At this point it's just makes most sense to take the round 2 to be sure you didn't get the placebo and just see what it does.

That's what I'm wondering, and that's what I've been wondering this whole time, but nobody (not even the experts) seem to have any answers. Would the glutamine storm only affect the inner ear and not the auditory nerve connected to the hair cells? Also, for a glutamine storm I would assume the process would be faster than 3 months. I don't know.

This thread https://www.tinnitustalk.com/threads/questions-regarding-am-101-and-trt.10568/ touched on the topic a while back.

 

[bill 112]

That is interesting. We have heard that the brain fibers are even more fragile than the hair cells and can be just as easily damaged without hearing loss. If that's the case, then you would think that AM-101 wouldn't do much for it, because it's really designed to deal with glutamate inhibition. I hope that isn't the case for you, and I agree you have good reasons to be concerned, but I just don't think it's good to try to obsess to that point because going off of the consistency of the sound is not a good way to be certain. It still could be damage in higher frequency ranges. At this point it's just makes most sense to take the round 2 to be sure you didn't get the placebo and just see what it does.



Yes overall, it's been significant. Week 1 was good, low T and a couple of days of silence, week 2 was great, about 4 days that included silence, week 3 was a set back, with just low T but no silence, and the past 4 days have been great, silence on back to back days. Today's low again. Probably the best stretch has been the past 4 days so far. Started Saturday with very low T, then Sunday it dropped to silence by evening, again yesterday, and today it's very low again. Probably the biggest improvement other than experiencing silence, is that even when my T is present it changed to a low sizzling head centralized sound, as opposed to the hissing that came from my ears. That's been the best part really because it just doesn't annoy me anywhere as much when its like this as opposed to the hissing. I heard the hiss come back last week on 2 or 3 occasions, and thankfully it went away again, but for the most part it's been gone since the injections. I either have a centralized sound, or it drops down to silence. This centralized sizzle only started happening after AM-101. Never heard it before. It still fluctuates, but never above my baseline, more between very low T and low T. So the easiest thing to notice, is that the hissing was present 100% of the time before, and now its been more like 5% of my awake time. And obviously the repeated days that included hours and hours of silence until I went to bed.

That's great to hear Alex,funny enough I was talking to one of the doctors involved in the trial and even though I've had T on and off for the last few years he asked the trial sponsors about screening me also.They accepted to screen me and I'm highly considering doing it too!They probably won't let me participate in the end,still worth a shot though

 

[AlexSongitus]

That's what I'm wondering, and that's what I've been wondering this whole time, but nobody (not even the experts) seem to have any answers. Would the glutamine storm only affect the inner ear and not the auditory nerve connected to the hair cells? Also, for a glutamine storm I would assume the process would be faster than 3 months. I don't know.

This thread https://www.tinnitustalk.com/threads/questions-regarding-am-101-and-trt.10568/ touched on the topic a while back.

Well it would affect the auditory nerve in the sense that AM-101 prevents the receptors from being flooded with glutamate, and if this is what causes increase activity on the brain side then it would prevent that from happening. But in this scenario, the active cause is still in the ear cells/glutamate. I do not know if when you have damage on the auditory nerve fiber it's the damage itself that are causing spontaneous firing. If it's that, I imagine AM-101 would be pretty useless, since it's not designed to do anything about that.

Only if damage to to the nerve fibers also reversibly cause glutumate flooding back on the cell level and that still happens to be the original point of activation for your T. Then the damage to the nerve fibers on its own isn't causing the neurons to fire but rather still the reversibly triggered glutuamate just as in the theory above. This would seems really far fetched to me though. I don't know enough about the workings to say for sure, but from my own common sense, I would say actual nerve fiber damage wouldn't be treated by receptors on the ear side getting blocked, so AM-101 wouldn't be so useful in that case.

Edit: From reading that OP's explanation, they seems to suggest the possibility that any damage, nerve fibers or cells/nerve hairs could cause glutamate flooding and it's more of a reaction of the central auditory system as a whole. I would have thought the increase is caused more by the damage to the hair cells, but if it's either side...then I suppose there might be a chance. Something to ask when I see my doc again. Not sure which I'm going to see for my next follow up. That's a good question for him.

 

[AlexSongitus]

That's great to hear Alex,funny enough I was talking to one of the doctors involved in the trial and even though I've had T on and off for the last few years he asked the trial sponsors about screening me also.They accepted to screen me and I'm highly considering doing it too!They probably won't let me participate in the end,still worth a shot though

Well if they do you wouldn't be the first person that they seem would have taken on with prior T, which does lend more credibility to the skepticism some people have about their procedures. Don't get me wrong, I hope they do and you get some benefit, but it's weird they are willing to consider you if you have had T in the past and are out of the acute stage. I know one member mentioned getting turned down simply for having experienced "prior T triggers" or something to that effect, which was pretty crazy. Did you have a recent re-aggravation perhaps and before that your T was just gone for a long time?

 

[bill 112]

Well if they do you wouldn't be the first person that they seem would have taken on with prior T, which does lend more credibility to the skepticism some people have about their procedures. Don't get me wrong, I hope they do and you get some benefit, but it's weird they are willing to consider you if you have had T in the past and are out of the acute stage. I know one member mentioned getting turned down simply for having experienced "prior T triggers" or something to that effect, which was pretty crazy. Did you have a recent re-aggravation perhaps and before that your T was just gone for a long time?

It came and went Alex,had it for a few months but then disappeared so for that reason I'm not considered chronic if that makes sense?My T has come and completely or near completely disappeared over the years so that's why they're considering my participation.I have made them aware of this and they still want to screen me regardless in April.God I hope I get the same results you have,would transform me from where I am now.I don't believe that I simply habituated to my T,it simply wasn't there or it was hard to pick out!

 

[AlexSongitus]

It came and went Alex,had it for a few months but then disappeared so for that reason I'm not considered chronic if that makes sense?My T has come and completely or near completely disappeared over the years so that's why they're considering my participation.I have made them aware of this and they still want to screen me regardless in April.God I hope I get the same results you have,would transform me from where I am now.I don't believe that I simply habituated to my T,it simply wasn't there or it was hard to pick out!

Interesting, that could be the case then. So did something sudden happen to cause it to return again? How long has it been since it returned? And I hope you get in and definitely wish you the best of luck.

 

[bill 112]

Interesting, that could be the case then. So did something sudden happen to cause it to return again? How long has it been since it returned? And I hope you get in and definitely wish you the best of luck.

I'm not fully sure what happened Alex,I was doing fine and had a few noise exposures nothing ridiculous,slowly but surely I felt my ears acting up when all of a sudden extreme T came in along with H.Happened so quickly I just don't fully understand it but I know noise had a major role to play.Went to get hearing tests done which funny enough worsened my current situation but they all came back perfect up to 10,000hz.I can feel it in my ear,it's not coming from my brain and I'm 100% certain of that.

 

[bill 112]

Started on the 10th of March,had symptoms since January but I didn't correlate the two of them

 

[AlexSongitus]

Started on the 10th of March,had symptoms since January but I didn't correlate the two of them

What do you mean with symptoms?

 

[bill 112]

I began getting a tight feeling in my neck,a stinging sensation over my head too,something very similar to T1 Tridgeminal neuralgia.This progressed and I thought it was due to stress and was put on 4mg of muscle relaxers a day.It worked and I was basically able to function,the tightness would return once and again and then leave.My ears were ok no extra sensitivity or anything.Then in March my ears just began ringing like crazy and after tests the docs confirmed that the tingling burning feeling in the back of my head and the T are connected.Im in for acupuncture and such tomorrow to see if that eleviates it but I highly doubt it.When my ears ring up which they do now to every single sound this burning tingling feeling comes with it and spreads within my body.The Specialist I see says they are connected but can't work out why He reckons something is happening within the inner ear.Its a long complicated story but that's the jist of it.

 

[AlexSongitus]

I began getting a tight feeling in my neck,a stinging sensation over my head too,something very similar to T1 Tridgeminal neuralgia.This progressed and I thought it was due to stress and was put on 4mg of muscle relaxers a day.It worked and I was basically able to function,the tightness would return once and again and then leave.My ears were ok no extra sensitivity or anything.Then in March my ears just began ringing like crazy and after tests the docs confirmed that the tingling burning feeling in the back of my head and the T are connected.Im in for acupuncture and such tomorrow to see if that eleviates it but I highly doubt it.When my ears ring up which they do now to every single sound this burning tingling feeling comes with it and spreads within my body.The Specialist I see says they are connected but can't work out why He reckons something is happening within the inner ear.Its a long complicated story but that's the jist of it.

I see. So it more or less arose one day without a specifically known cause. Were you still on medication when it started? Could it have been that? The reason I ask is because I think they will ask you for a cause.

 

[bill 112]

I see. So it more or less arose one day without a specifically known cause. Were you still on medication when it started? Could it have been that? The reason I ask is because I think they will ask you for a cause.

I was on a few meds but nothing that I can link to causing this in my ears.I was on anti inflammatories for 2 weeks for an arm injury and then 2 antibiotics for infections(Penicillin)I made sure to get Penicillin as they're supposedly the safest antibiotic.The symptoms came on after a noise exposure.

 

[Aaron123]

.I was on anti inflammatories

By any chance, do you remember what anti inflammatories specifically?

 

[bill 112]

By any chance, do you remember what anti inflammatories specifically?

I was on Ibuprofen,after reading they were potentially ototoxic I decided to stop them,I did not notice a worsening of my symptoms during my time useing these so they're not to blame in my opinion.I was on them for two weeks back in October.