Let's meet again (My tinnitus experience)

David Bayode said:

Thank you for sharing something so personal, we all have our battles..

Regenerative medicine will be much better going forward especially for calling on stem cells towards a point of injury/repair. I wish it works for you even better than you expect.

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Hopefully there are a lot of clinical trials and regenerative medicine is under progress. I get updates for any news. To say the truth i don't really care when FX-322 be available, it would be great if i knew that it works on me 100%.

kite26 said:

Hopefully there are a lot of clinical trials and regenerative medicine is under progress. I get updates for any news. To say the truth i don't really care when FX-322 be available, it would be great if i knew that it works on me 100%.

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Think outside of the box


I can offer a distance session through video....


If it clears the problem donate whatever you want to

First of all thank you. The main purpose of the thread is not to cry, but to share my thoughts about T, my story and give courage to others. Thank you again.

kite26 said:

Hello folks. My name is Athanasios aka kite26. I am active on this forum since '12 and i have a good reason to create a thread here. What motivates me to write is my personal tinnitus experience.
I suffer from tinnitus since 30/5/2020. When i woke up, i realized that i was listening an odd hissing sound, similar to cicadas crickets. A broken television? Hell, no! Some minutes later, everything was ok, except for my head. The sound was produced inside my head! You can't imagine how shocking experience it was. I was feeling that i was unable to do anything to fix it. I went to doctors. Many doctors. They said there is no cure and i have to accept it.

To accept it?

Yes guys, i had to accept this terrible situation and familiarize it. How to accept a piercing sound inside your head around 9000 Hz?

I will not tell lies. If it happens to you, the road for familiarization is full of hurdles. At first, it seems to impossible to achieve it. But month after month, i really started to not take it seriously and continue my daily life. I feel like a winner now, as tinnitus has stopped to be the center of my life, but a small part instead.

Some good news
While there is no cure as i mentioned, many clinical trials are on progress. The biggest hope for cure is FX-322 therapy. You can read about it here. I asked on a tinnitus forum about its release date, it will be released at 2025 max. All tinnitus sufferers hope to have a therapy for this symptom. Because T is symptom, not a disease.
It can really destroy your life, causing you depression. I really hope FX-322 give a final solution for all of us.

To conclude, i wanted to share it with all of you because on this trip, i didn't quit my job, nor domaining. I am trying to stay strong and never lose my hope for the cure. Don't let all the difficulties to let you down. Keep trying my friends and stay near Jesus.

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Hi @kite26 ,

What a traumatic experience. Its so sad to read about it. I didn't even know this is what Tinnitus is all about, as I only just come across the word and move on.I knew it was a medical condition but never knew it was so uncomfortable. I will be praying for your healing through Jesus. Have steady faith .

Mister Funsky said:

Thanks for the info. Over a decade ago I received what was then called 'death chemo' in which one third of the patients would die during treatment, another third would die within a couple of months of the treatment (the body would not fully restart) and the remaining third would survive. I'm in the latter.

The list of things that were permanently done to my body is long but the most constant reminder is the buzz/ringing the treatment left behind. It is constant and quite loud...and as you describe above, you learn to exist with it. In my case, it is so loud I can miss about 20% of things that are said because the speaker does not use enough volume to override the buzz.

I hope there is indeed some relief on the horizon for all that deal with this 24/7 (during sleep is the only time my mind is not aware of the sound).

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@Mister Funsky,
So sorry to hear about your traumatic experience as well .I will be praying for your healing as well. A lot of us are going through a lot and I hope you all get the healing and live a normal healthy life again.

Interesting thread. Best wishes

Skyvisum said:

So sorry to hear about your traumatic experience as well .I will be praying for your healing as well. A lot of us are going through a lot and I hope you all get the healing and live a normal healthy life again.

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Thank you for the kind words...all prayers are appreciated!

This thread is an an example of how a digital community can do some good...of course ailments are not the purpose of this site, but the fact that diverse communications are allowed means the shared information could enhance someone's life. Despite how often I interact with doctors, none have mentioned the drug(s) that are on the horizon that may help this condition...many thanks to @kite26 for starting the conversation. I too will consider acupuncture as I've seen it be effective in other conditions.

This is just one of the physical and/or mental ailments that some nps members are dealing with...I will take this opportunity to pray for healing and comfort for anyone that needs and wants it.

Mister Funsky said:

Thank you for the kind words...all prayers are appreciated!

This thread is an an example of how a digital community can do some good...of course ailments are not the purpose of this site, but the fact that diverse communications are allowed means the shared information could enhance someone's life. Despite how often I interact with doctors, none have mentioned the drug(s) that are on the horizon that may help this condition...many thanks to @kite26 for starting the conversation. I too will consider acupuncture as I've seen it be effective in other conditions.

This is just one of the physical and/or mental ailments that some nps members are dealing with...I will take this opportunity to pray for healing and comfort for anyone that needs and wants it.

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Unfortunately, doctors can't do anything because the drug is under its trial phase. So, they say no cure. But probably we will have the drug until 2025. Wonderful news. Next phase for FX-322 is this May if I remember well. Stay calm, stay strong and positive and more good news will come.

best regards

I will tell you the real cause of this Tinnitus, as i have experience with it i know after what it amplifies and dissipates, you will not believe what i will say.
The Tinnitus is caused by words you say and write in direction to other people, the result is that they begin to be angry on you and possible even curse towards you, which in return comes as that unknown sound, but i think it is a frequency of other humans that our brain receives.
There are also some Tinnitus which comes in huge wave and dissipate slowly after some seconds or minute, this is worse cause it comes from a curse, we have also a saying that Devil have passed near by.
So the permanent small sound is caused by people which you offended and now they kiss you in the *** because of what you said to them.
As i like to speak directly i get many haters and when Tinnitus comes i know that my words worked, if you want to get rid of it be kind and on mute with everyone.

I am very touched for your support guys. Thank you. I really hope for you all the best. I will update this thread when we have news about FX-322. Next month we will know the results of the phase 2A. Pipeline is here.

@kite26

sorry to hear about that, friend. I know a bit about this topic as well. If you want to get rid of this problem, consider the following points (I am not a doctor, and following is NOT medical advice - you must do your own due diligence and consult with your doctor, always!).

A). 1 mg of Magnesium per day (consult with your doctor if you can take it, but probably yes - you should see a MAJOR improvement in a month or 6 weeks. Continue taking as long as you can, with your doctor monitoring it).

B). Get rid of any stress or inner conflicts - at your age, it is not probably that easy, as you are still in the "expansive" stage of human being development and want to achieve things - this will get better after you cross 40. Still, stress is your worst enemy.

C) Get rid of negative people in your life - again, not easy, but try it. If your family or close friends are negative or toxic, you can not get rid of them, but at least be aware of the whole situation, and limit contact with people who makes you feel bad.

D) Get into a stoic mode in life - you do not need to be a fighter, just be more aware of everything. Things are very bad in the world and they will get worse - once you know it, at least you avoid being surprised.

E) If you can get a pet, dog, or cat, they can make wonders to calm the nervous system and give unconditional love. You will not get these benefits from humans, mostly - there the love is almost always somehow conditioned. Of course, pets require a lot of care which is impractical for a lot of people. So, you can visit your local ZOO often - I am myself very often in our beautiful ZOO here in Prague, as I love animals, but I do not want to spend too much time caring about them

F) Do a lot of walks in nature, in beautiful places, on the beach. Avoid people who stress you out.

G) Small exercise every day. Swim, gym, or just walks.

If you do all that, your life will be wonderful and tinnitus will be slowly gone. I had very serious tinnitus for more than a year when I was around your age (I am now 42), It has gone away after I implemented the points which I outlined above, and I have never experienced it again. But you need to make changes in your life. If you can not make B-G, at least really consider A.

GL friend

iTesla said:

I will tell you the real cause of this Tinnitus, as i have experience with it i know after what it amplifies and dissipates, you will not believe what i will say.
The Tinnitus is caused by words you say and write in direction to other people, the result is that they begin to be angry on you and possible even curse towards you, which in return comes as that unknown sound, but i think it is a frequency of other humans that our brain receives.
There are also some Tinnitus which comes in huge wave and dissipate slowly after some seconds or minute, this is worse cause it comes from a curse, we have also a saying that Devil have passed near by.
So the permanent small sound is caused by people which you offended and now they kiss you in the *** because of what you said to them.
As i like to speak directly i get many haters and when Tinnitus comes i know that my words worked, if you want to get rid of it be kind and on mute with everyone.

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That is very interesting point of view and I think there may be a big substance in it.

Many people think that by being kind they save or help other people - and this is true - but the fact is, that by being kind to others we help mostly ourselfves. Unkind people already experience hell in this life.

I'm very sorry to hear about your painful experience.
great, that you found the energy to post your story here.
All the best to you.

iTesla said:

I will tell you the real cause of this Tinnitus...The Tinnitus is caused by words you say and write in direction to other people, the result is that they begin to be angry on you and possible even curse towards you, which in return comes as that unknown sound, but i think it is a frequency of other humans that our brain receives.

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you are an evil troll
and don't help anybody with that post

Brands.International said:

That is very interesting point of view and I think there may be a big substance in it.

Many people think that by being kind they save or help other people - and this is true - but the fact is, that by being kind to others we help mostly ourselfves. Unkind people already experience hell in this life.

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Btw, this remark I made is in no way pointed to anyone here, and definitely not to @kite26 , he is perfect guy It was more a reflection to myself and my life, to be honest

Ear problems are not fun, I avoid going to loud events now because I came pretty close to permanent damage a few times, I am not risking it. I get ocasional ear noises and it can get annoying so I can't imagine how annoying it is to have it every single day.

King said:

Ear problems are not fun, I avoid going to loud events now because I came pretty close to permanent damage a few times, I am not risking it. I get ocasional ear noises and it can get annoying so I can't imagine how annoying it is to have it every single day.

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This situation is very stressful. You are not sure about your condition. Every loud sound kills you. You don't exactly what you have even though you experience it everyday. The only thing keeps me fighting is that I hope that FX-322 will improve things. It has better results for high frequencies (over 8k Hz), which is my T range. However, I hope to help lower frequencies too. We have to wait trials.

Unfortunately, the results of current clinical trial are not good. No improvement with multiple doses of the drug. But we need be strong and optimistic.

kite26 said:

I really hope FX-322 give a final solution for all of us.

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@kite26 I sincerely hope and pray that you'll find the final solution to this soon.

Hi Kite,

Get well soon so sad to hear this; We all suffer from something or the other. Get well soon man!

Thanks

Thanks for sharing this with us! Do reach out if you need someone to talk to

@Save Breach Thank you mate. I plan to try acupuncture and start Gingko Biloba tea and see. I am trying to continue my life. Sometimes, especially at night it's not easy.

kite26 said:

@Save Breach Thank you mate. I plan to try acupuncture and start Gingko Biloba tea and see. I am trying to continue my life. Sometimes, especially at night it's not easy.

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There is an Indian medication, related to Ayurveda. Acccupuncture helped my headache but its hard to find skilled professionals. Go for a good doctor man :D

I wish you all the best. Never lose hope.

@kite26 thanks for sharing, feel for you - I have had it in a mild way for a few years now - 2 - 3 times on average a day the ringing happens (luckily) it is pretty quiet, annoying but manageable....sometimes it even throbs in time with my pulse which is slightly worrying.......

I used to go to a LOT of raves, concerts, underground music events and literally dance and stand right in front of these huge speakers every weekend between the age of 16 - 23 - I even used to put my ears up against the speakers

Hope you find a way to keep it manageable until (hopefully) some kind of cure comes along.......

Save Breach said:

There is an Indian medication, related to Ayurveda. Acccupuncture helped my headache but its hard to find skilled professionals. Go for a good doctor man :D

I wish you all the best. Never lose hope.

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Doctors are not the solution. They told me that i am very good. No solution=no problem for them.
Antidepressants are not something i want too.