New to Tinnitus and Hyperacusis — Willing to Try AM-101 Trial in Quebec, Canada

[Jean-Daniel Guay]

Hi to all,
First of all, I would like to thank everybody on this website as I have been reading several posts in the last few weeks. You have given me some hope that it is possible to overcome tinnitus and hyperacusis which have been part of my life for the past 6 weeks. Those have been the worst weeks of my life (to say the least). Second, I would like to thank (in advance) all of you that will take some of your time to read my post and try to answer some of my questions. I need some support as I am very anxious being a young man of 29 years old waiting for his first child to be born.

Here is my story. Coming back from a research conference in South Carolina (I'm a French-Canadian from the province of Quebec), I went to a concert in Philadelphia as my plane was overbooked and I needed to stay in the city until the next morning. After the concert, I had "ringing in the ears" but I thought it would go away as usual as it had already happened to me before. I took the plane (with a cold) and when I arrived in Quebec City, I still had the "ringing in the ears" but I thought it would go away and I did not panic yet. After a few days, I started getting anxious reading some posts over the internet about the mighty tinnitus and I went to the doctor. They gave me the usual medications (corticoïds, vasodilatators, antibiotics as my ENT thought I might have a sinusistis). While the "ringing in the ears" got better over time (and I think it is still get better or I'm getting habituated), it is still very bad as I can often hear it over the television and music even if I try really hard not to think about it. I also experienced "fullness in the ears" as my ears seemed to have some problems to find some pressure equilibrium (this seems to be get better also but they keep on popping when I do some exercise to relieve stress and anxiety). On top of that, I'm also experiencing some kind of hyperacusis (especially for high frequencies from background noises such as the fridge, fans, microwaves, neon lights, etc.). I am a language teacher/graduate student and I worked during the last couple of weeks even if it was really hard with all the background noises at the university as I can't afford to stop working since I am waiting for my first child. So, that was my story (sorry for the length, but I thought it would help you to understand the "full story").

Here are my questions:

- Regarding hyperacusis, I have been told not to overprotect myself to get used to the sounds again even if it is uncomfortable. I have noticed that my ears seem to be very tired if I expose myself to "high frequency" background noises for extended period (especially when I am teaching) and that my tinnitus seems to be worse at night and the next morning if I do. Should I protect myself if my ears start to get tired and that the noises because really uncomfortable and even painful? Also, I have read on several posts that hyperacusis will fade away with time, so should I continue to try to get "habituated" to the uncomfortable sounds? Finally, should I worry about the baby's cries of my newborn as I am really anxious about that?

-Regarding tinnitus, it is not so bad during the day as I am not hearing it while I am busy doing something and not too tired. However, I have some spikes several times a day and I can hear over everything (even over TV and music). Should I expect those spikes to lower over time?

-Finally, I have final questions about the AM-101 experimental trial. I have contacted the company as they are doing trials in Quebec city and they told that I am eligible for the study. I'm really willing to "take one for the team" as I'm a researcher and that I want to encourage research on tinnitus. However, I've always been really scared of any "intrusive" medical treatment and getting some "gel" in the ears looks kind of scary to me. I don't want this to worsen my condition as I believe that I might get used to it over time (even it takes a lot of time as several posts on this website gave me some hope). I also would like to know if it would be better to try some other methods (natural supplements, acupuncture, etc.) to lower tinnitus and hyperacusis before trying AM-101?

Basically, I would like to know what would you do in my situation? Would you try the AM-101 experimental trial or would you stay away from it and wait to see if tinnitus and hyperacusis are getting better on their own (or with some "usual methods")?

I'm "very very" sorry for the long post and thank all of you who will take the time to read it. I waited and reflected a long time before posting it but I really need some support right now. Many posts have been helpful to me on this website and I want to collaborate with you guys. Hope that it may help some other newcomers! Thanks again.

 

[Street Spirit]

Allo Jean-Daniel, fellow French Canadian well my family is from Montreal, but I was born in Ontario Anyways I am sorry about what happened. This T and H stuff is a real life changer, but let's hope with time not for you Sounds like you are already habituating to a certain degree or else your T is fading somewhat. Regarding your H, if its mild then indeed chances are very good it will fade in time. You could be having a bit of "reactive T" which accounts for your increased T due to noise exposure. Common amongst H sufferers. I personally would not do the trial as of yet. It sounds like things are sort of settling on their own. (Sorry, I may misunderstood, do certain noises hurt you right now?)

Now as for your ears. Protect them from loud noises ( as best you can) and loud environments. You are in a critical stage right now and your ears need rest..No clubs, concerts etc..You've read alot by the sounds of it and probably know the drill.

No doubt there will be others recommending the trial, I don't know enough about it so I will leave that alone..I just feel that if you are already making progress, best to leave it alone.

Good Luck.

 

[Jean-Daniel Guay]

Hy Lynn, thanks a million for responding. I have noticed by looking at your profile that you T and H. I hope it is getting better for you.

- Regarding H, indeed, some sounds are being really uncomfortable and seem to have an impact on my T level. High frequency background noises (fans, fridge, some sounds when I go to the gym...) are the worse. Should I protect from them because I don't have any problem with other noises? Also, when I go to the gym, I noticed that the sound coming form some exercisors (especially treadmills) are hard to tolerate? Should I protect when I go to the gym? I've tried to protect yesterday and it seemed to have lower my T in the evening but it is quite similar today. What do you recommend me?

-Also, I have a lot of pain around the ear and especially behind the lobe (similar feeling that I experienced when I had several otitis when I was younger). When I slightly press behind the lobe, it very painful. Does it come along with T and H? During my two first visits, my ENT told me that I don't have any otitis and that the pain would fade away with time but it doesn't seem to get better over time. Any advice or experience on that?

Again, thanks for helping,
Have a wonderful day.

 

[davidchampoux]

Hello Jean-Daniel. I'm David, from Quebec City too. I'm new on the forum.

How did your situation evoluates? I hope you're getting better!

I'm dealing with T for 3½ years now. I'm in a very rough period at the moment. T has been louder since 2 months... I'm conastantly hearing a 14 500 hz tone in both hear, at about 90db. Hard to accept and deal with...

Can you tell me who should I contact regarding the AM-101 study in QC ? I might consider it if I'm eligible...

Thanks, and good luck!
DC

 

[Emily Sanchez]

@Jean-Daniel Guay Did you end up participating in the AM-101 trial? If not, has you T gotten better? Mine started about 3 weeks ago and I feel that it is similar to yours. Any update would help, thanks so much!

 

[liquefact]

- Regarding hyperacusis, I have been told not to overprotect myself to get used to the sounds again even if it is uncomfortable. I have noticed that my ears seem to be very tired if I expose myself to "high frequency" background noises for extended period (especially when I am teaching) and that my tinnitus seems to be worse at night and the next morning if I do. Should I protect myself if my ears start to get tired and that the noises because really uncomfortable and even painful? Also, I have read on several posts that hyperacusis will fade away with time, so should I continue to try to get "habituated" to the uncomfortable sounds? Finally, should I worry about the baby's cries of my newborn as I am really anxious about that?

This is correct, do not overprotect your ears. Your brain needs to get used to that alien sound and if you do not give it this chance, i see no chance of habituation. I stopped masking immediately after realizing that masker sounds increase the intensity of my T. At first it was very hard but over 1-2 weeks i was able to sleep without any maskers at all. I believe NO MASKING accelerated my habituation tremendously.

This does not mean that you should not protect your ears though. I'm always using ear plugs and ear muffs in noisy environments. Our inner ears are damaged my friend, in one way or another, we cannot afford to damage it further.

For the hyperacusis, i was not able to endure the warnings in my car like the emissions check etc 1 month ago. For ~2 weeks, i'm still bothered but can endure. I can safely agree with that thought, the H is easing faster than T.

I also have a newborn and after the onset i was going literally mad when she was crying. Also do you know the decibel of a newborn cry? It's crazy. Do not be anxious about that, but be aware and protect your ears.

-Regarding tinnitus, it is not so bad during the day as I am not hearing it while I am busy doing something and not too tired. However, I have some spikes several times a day and I can hear over everything (even over TV and music). Should I expect those spikes to lower over time?

The frequency of the spikes for me decreased substantially. I can easily say that after 2.5 months, my T is pretty much stable. And i honestly prefer a stable T over a fluctuating T even if it goes to 0 sometimes. Because you feel very good if the intensity of T decreases but feel much worse when you realize that it's becoming louder. If this alternation always takes place then you're effectively exhibiting the behavior of a manic-depressive.

-Finally, I have final questions about the AM-101 experimental trial. I have contacted the company as they are doing trials in Quebec city and they told that I am eligible for the study. I'm really willing to "take one for the team" as I'm a researcher and that I want to encourage research on tinnitus. However, I've always been really scared of any "intrusive" medical treatment and getting some "gel" in the ears looks kind of scary to me. I don't want this to worsen my condition as I believe that I might get used to it over time (even it takes a lot of time as several posts on this website gave me some hope). I also would like to know if it would be better to try some other methods (natural supplements, acupuncture, etc.) to lower tinnitus and hyperacusis before trying AM-101?

I'm going to screening next week and scared to hell as well because of the obvious reasons. Even though i could find no report indicating the worsening of T after AM101, there's still the risk. And the temporary spike of T which can last for weeks during which you cannot have any other treatment to suppress it is scary. Still i'm willing to participate, hope i do not back off the last minute.