I'm So Done

Sorry but I need to rant!

FOUR FREAKING YEARS!!! Four years of my life gone and living in either misery or barely managed depression.

FOUR YEARS AND FOUR INCREASES

I have so much hearing loss. Even every day noises that don't affect people give me hearing loss. Literally a four hour shift at work manning the quietest part of the store gave me hearing loss again in March.

It's so loud now that I can barely sleep and I can't watch TV or listen to music or play anything on my computer because it makes it worse. I'm sooooooooo tired of living and I'm only 25. I "habituated" 3 times to this but this time there is no habituating to it. There just isn't. It's far too loud.

I miss my hearing I can't hear crickets or frogs outside at night anymore. I can barely hear wind moving in a room.

I have been crying over tinnitus for years and it's a miracle that I'm still alive right now. An absolute bloody miracle.

And to know that even if Frequency Therapeutics succeeds, it likely wont work for me is so disheartening.

I'm so tired guys. SO TIRED AND SAD. I wish I would just die already. I don't wanna go on like this for the rest of my life. I'm too young for it. I literally cannot do it anymore.

If someone would have told me four years ago that my tinnitus was gonna become like this I would have offed myself instead of hung on.

 

@derpytia ,
Sending you lot's of hugs.
Tinnitus is truly a monster and can impact in every part of your day and emotionally grind you down as it does for me if I let it ...
We are hear for you and hope you have a lovely weekend out in the sun.
Love glynis

 

I understand. I've had 8 years of worsening T. It's so loud now that sleep is so difficult and hard to enjoy life. I know it is so exhausting. I just hope some help will come soon. You are young and a treatment that works will surely come in your time, while you are still young. Hang in there, taking one day at a time. You are not alone. Is there a support group near you? This has helped me feel not so alone.

 

Sorry to hear your aggravated ringing and your struggle with it. With the hearing loss, have you tried hearing aids to see if that will lower the T a bit? Don't know if you can handle masking music or nature sounds as you seem to imply that normal sounds can damage your hearing. If you are seriously considering offing yourself, perhaps you should consider some of the other treatment options that people don't normally try, such as stem cells, trobalt and others that have been discussed in the treatment section. Even drugs such as Xanax have helped some in desperate situation. Don't off yourself if you haven't exhausted the treatment options. Sure hope something can help you along the way. Hang in there. New drugs or treatments are in the horizon. You are young and can't rule out that your T may calm down to a level you can habituate. Wish you all the best. Take good care. God bless.

 

I am sorry. Have checked you the possibility of an auto-immune disease that is behind this hearing loss?

 

You could also ask your GP for clonazepam which reduces the tinnitus loudness for some people to a low level for some hours up to a day. From what I've read it's best to only take it occasionally, not something you'd want to take often over a long period of time but e.g. 1-2 times a month should be okay. Here's the thread on Clonazepam (Klonopin, Rivotril).

Not sure how much you're keeping up with research or whether you're interested in it or not (some people find research more depressing than uplifting which I can understand) but I've put some upcoming trials under spoiler.

Upcoming trials

Spoiler

Hair Cell Regeneration Trials in 2018

• Frequency Therapeutics - FX-322
  • Phase 2 (begin 2nd half of 2018)
• Audion / Regain Trial
  • Phase 1/2 ongoing in UK
• Genvec / Novartis - CGF166
  • Phase 1/2 ongoing

Other Trials in 2018

• Xenon Pharma - XEN-1101 (new retigabine / for epilepsy)
  • Phase 1b ongoing in London
  • Phase 1b completion date: July 2018
  • Phase 1 results: 2H2018
  • Phase 2 expected to begin by the end of 2018
• University of Michigan
  • signal timing device (Pivotal study / Phase 2 begin: August)
• MuteButton Device // Neuromod
  • trials in Ireland and Germany; more trials in the US planned
• Sens-401
  • Phase 2 (for SSNHL)
• Maps (MDMA)
  
  • 2x Phase 3 clinical trials of MDMA-assisted psychotherapy in patients with severe PTSD starting in 2018

  ​

Trials to begin in 2019

• Otonomy
  • 1H19: OTO-313 (reduce tinnitus) Phase 1/2
  • 1H19: OTO-413 (repairing synaptic damage) Phase 1/2
  • OTO-6XX (hair cell regeneration)
    • 2H18: candidate selection
    • 2019: Phase 1/2

 

He may be correct. Normal noises cannot give anyone hearing loss. There may be a very serious disease behind this. You need a proper medical evaluation.

 

My heart goes out to you. It's been six months since I got my T and hearing loss and life has been pure hell even since. There are still some nice moments, but overall, this is now a life I could do without and will be if Frequency Therapeutics fails. Life is one of this things where the destination doesn't matter, but the journey and if you can't enjoy the journey no more, there's no shame in cutting it short.

 

Why do you say that? Do you know the root cause for your hearing loss?

 

I really feel for you. There is no worse feeling than worrying about a medical issue to which you have no control. Our emotions can be all over the place. I can get quite easily depressed over even mundane things, so when something is really upsetting it can really cut deep.

Have you ever been given a diagnosis to the cause of your problems? It just seems like something else could be going on in your case.

 

Awww, you are so young and having to deal with this. Feel proud of yourself that you have been able to manage in the last 4 years, there must have been some good days in the past 4 years?
We are all here for you and understand how you feel.

 

You're not alone. We're here to listen.

 

Sorry to hear about your struggle...you are a very strong person.
I fought this monster for 3 months and if it weren't for accidentally discovering that playing back the same frequency as my T turns down the volume, I doubt that I would be here writing this rite now.
Your big hearing loss seems strange.
Have you checked for Lyme disease?
It is notoriously hard to diagnose through blood test, but maybe someone in your area does a Vega machine testing?

 

When you say hearing loss, is it just that your T is so loud you can’t hear over it, or have you actually lost your ability to hear, even if there was no ringing?

 

I've done tests with my GP. All came back normal.

 

It's been four years. I've tried Xanax, antidepressants, and much more. Nothing. I'm currently starting a new antidepressant that I hope I wont have to discontinue like the rest I've tried (had to discontinue because the side effects were horrifying).

 

I first lost hearing when I was five years old after my no good father put a gun in my hand when my mom wasn't home and had me shoot at soda cans without hearing protection. But I didn't get T then. More hearing loss was accumulated through the first half of my college years with several instances of temporary ringing after events that I ignored because I didn't know about T.

 

I have severe high frequency hearing loss. I can't hear any noise over 3.5 khz and some loss in the mid and lower frequencies.

 

Been checked over for Lymes. Don't have it.

 

Root cause is hearing loss. But I don't think Frequency's approach would help me because, as some people have stated in the official thread for it, damage to the hair cells can also mean damage to the supporting progenitor cells which means that even if those cells were activated, they wouldn't regenerate anything.

 

I am not sure if you have done therapy or not but doing only antidepressants or Benzos without the therapy is not normally suggested. Try to find an IOP to do some CBT and DBT.

 

Sure, but what makes you think that your supporting cells are also damaged?
It seems like it's a possibility, not a certainty.

 

@derpytia It's seems that most everything in relationship to your ears has been checked. Back in the eighties, doctors at a hospital in my area saw a lot of hearing loss due to chemicals. They were finding hearing loss since the sixties. Back then the population in this area was only in the thousands not in the millions. Many either worked in farming, for a large Air Force base or for a military jet contractor. This contractor caused a great amount of pollution to the soil and water supply. Scroll down to chemicals in this link. Just a thought. I also think that @Tinker Bell post is important.
https://en.wikipedia.org/wiki/Hearing_loss

Added: Just noticed that you live in this area too. Then you probably also know about the new toxic homes that were built in your area several years ago with the highest NOC deposits in the world. https://www.asbestos.com/states/california/

 

Where do your losses above 3.5k fall? Are they profound where you cannot hear sounds unless their 90dB? Where do your lower frequency losses fall? How much additional loss have you had in the past four years?

Normal speech is under 4k, which is why hearing aids tend to focus on lower and mid frequencies. Some hearing aids actually help with up to 12k. If you have significant hearing loss, you should really try a hearing aid.

My doctors were concerned about an autoimmune condition. Doing blood work at a GP is not sufficient to rule out all autoimmune diseases. Some autoimmune conditions are not even detectable via blood tests. I underwent a lot of testing including MRIs, CT scan, nerve tests, allergy panel, and a spinal tap in addition to very detailed blood work ordered by a neurologist and other specialists. There were at least a hundred blood tests, including different lymes tests that were pioneered by the medical facility.

I know it’s not easy to be an advocate for ourselves, especially when we’re already tired of our health problems, but I want to encourage you to push. If your hearing is quickly declining as you indicated, you need to see specialists.

 

May I ask what kind of test?
If it was the standart ELISA test, chances are it will come back negative even though you might have Lyme.
Lyme is next to impossible to diagnose through blood..there are some specialized labs (in Texas I think) that are able to detect it, but any VEGA test should be able to pinpoint it with 100% accuracy.

 

Ugh. Their should be they’re. I’m sure I have other errors but that one drives me crazy.

 

I think you should get a second opinion, if you have't done it already. This kind of rapid decline is pretty unusual and severe.

 

@derpytia I understand how your feeling since I often think about ending it myself because of the terrorizing sound i live with too. I had a great life until i was hospitalized for a serious illness last June and woke up in the ICU at the hospital on life support with tinnitus. Things have been fucking horrible ever. I fight everyday to get better but wake up everyday to the sound of a fire alarm going off in my brain just like you and its so devastating that I am unable to "get used to it" or "accept it" as many others in my life suggest that I do. I wish i could but like you said in your post its simply too loud to adapt to. I wake up and fight daily taking supplements and changing my lifestyle in different ways and doing anything i can different to get different results all with little to no effect so far but i stay fighting. I'm exhausted and feel like im losing my sanity after 10.5 months of fighting and cant imagine fighting for 4 years like you have. You are a real hero who is strong beyond what most people can comprehend so please keep fighting your life will get better at some point.

I really believe at some point technology will offer us some relief, hopefully in the next few years which keeps me going on the bad days since I also would probably not live much longer if I had to accept this as my new reality. You are an inspiration having gone through this for 4 years and I think your post is reflective of what a lot of us feel like since this condition is devastating and simply too much for the average person to deal with. The human body is not meant to endure this sort of nonstop suffering. I appreciate your post since it takes guts to say what a lot of us already feel like. I know things are awful right now but they will get better they have to get better. Keep up the fight and just remember how strong you are for what you have already achieved it really helps people like me who are earlier in the fight.

 

I totally agree with you to rant, not fucking fare . We need to make a topic on a this to rant. There are times you can cope , few years yes , but to think you have to live with this forever is fucking insane. I know there are ppl who are doing it , got to be most difficult thing, just can’t imagine how they did it. It put fear through my spine when I think of it. Sorry to hear what you going thru. It got to be to difficult on you especially with the way your hearing keep getting bad. I too have hearing loss .

You mentioned you have habituated 3 times you are a fighter.Got to ay you are strong doing it for 4 Years. Hopefully it will go back down. Is not easy to try to be thinking of positive taught, when this fucking things go out of control. We really need a pill, to at least get some kind of control on volume.

So many ppl are affected by this terrible sickness, don’t see why they say it a symptom. This shit is a sickness . This is worse than some sickness. Maybe that why it not being taken seriously. I rant because I feel for your suffering ok, I know it not easy on you . Only had this 6 months and it been worse than a bad dream. T is Groundhog Day. Feel better.

 

Hey @derpytia, I remember you and I came to this forum around the same time four years ago. It has been a journey for me as well. I really feel your pain and suffering but like most have said, keep exhausting options. Talk to people on this forum or similar situations like us. My hearing loss and tinnitus fluctuates on a day-to-day basis atm, possible diagnosis: Meniere's Disease. Sucks how fragile our ears are! Please reach out to me or any of us on this forum at any time. I really hope you find some sort of relief soon. Sending prayers your way