Trying to Stay Alive

Discussion in 'Introduce Yourself' started by keka, Aug 31, 2019.

    1. keka
      Wishful

      keka Member

      Tinnitus Since:
      08/11
      Cause of Tinnitus:
      benzo withdrawal
      Hello everyone! This is my first time posting here, so I just wanted to vent a little bit...

      Let's just say that I first got this horrible affliction in 2011 from a bad head cold, and from then, I had another permanent increase caused by another stupid head cold, then by wisdom teeth extraction (oh, but all the specialists guaranteed that it would lower my T, lol) and then, what really made me suicidal was the benzo withdrawal that caused severe tinnitus and hyperacusis that are persistent still to this day. I also have jaw pain because of the goddamn teeth grinding at night.

      Tinnitus and hyperacusis ruined my life at age 21. Every day is a challenge. My T is reactive and fluctuating. I don't know what it's gonna sound like tomorrow because it's changing every goddamn 30 minutes. I can no longer enjoy music the way I used to. I lived for it, man. I also loved singing. Those were my only passion. I can no longer sing because the sound of my own voice hurts my ears so I must speak softly. I can no longer go out with my friends because the fear of making it permanently worse once again is paralizing me. Of course, when I really must go somewhere, I put the earplugs in, but that just makes it worse cause they isolate external sounds and make the screeching in my head even more obvious. So I get back home, crying. I was forced to abandon college because of this. I can't work. I can't date. I'm sick of my family looking at me like I'm just a lazy person using tinnitus and hyperacusis as an excuse to do nothing. I'm sick of telling my family members things like ''can you please not yell, can you just please wait for me to get outside of the room so you can use a blender, can you please not slam the goddamn door''. I am so sick of everything. I can tell that they are sick of me too. Of course they are. No one likes a whiny parasite. Never in my life have I thought that my entire existence will be reduced to suffering. I'm being attacked by screaming noise everywhere I go. I'm spending my days locked inside of my room, watching life pass me by. Looking through the window and wondering ''why can't I be there''? I'm grieving every single day. I have become an angry and bitter recluse. I don't know what to do anymore, I can only hope that I live to see my 22nd birthday.

      I'm so sorry that I'm so negative, but I can't help myself. I feel like I'm lost beyond the point of no return.
       
      • Hug Hug x 14
      • Agree Agree x 1
    2. JohnAdams
      Wishful

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      You are not a parasite.
      Many of us feel the same way.

      I am sorry that you're going through this struggle. You've obviously been dealing with this much longer than I have.

      The only advice I can give, and it's the only advice I have, is to try some turmeric or curcumin. It helps me a lot and has helped a few others here.
       
      • Like Like x 2
      • Friendly Friendly x 2
      • Agree Agree x 1
    3. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Man... I really feel for you. Do you sleep with a mouth guard? If not
      ... you should really look into that. Greg Sacremento, a member here, knows a lot about mouth issues and tinnitus. I have learned from him that teeth grinding is really horrible and a mouth guard can potentially help. His suffering is extreme, like yours. Does your hyperacusis ever change? Does it fluctuate in terms of better weeks and worse weeks? What's your diet like? I know how much these afflictions suck... they have destroyed my work life, my art and nearly me, you are not alone. I have been fascinated by a doctor in Sarasota Florida who deals with extreme cases of hyperacusis. His name is doctor Silverstein. You can google his name with hyperacusis... his novel surgery may apply to you, it may not. Sounds like you have been off the benzos a long time and your tinnitus is coming from your dental work and teeth grinding. I hope you may be lucky and find some help with that... a compassionate and competent ENT or dentist. My ears are my problem so I apologize if my advice is a mess. It's good you're reaching out. You are not a parasite, you are suffering greatly. My heart goes out to you.
       
      • Friendly Friendly x 2
    4. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      Yes, you've been dealt a shitty deck of cards.

      I remember the days when my own voice would hurt my ears, and when I couldn't type on the keyboard either because of the pain. The good news is that hyperacusis has a reasonable chance of getting better. It often does, on its own.

      Sometimes you can find a root cause that you can fix (like I did with surgery). But the only way to know is to go down the diagnosis path. What tests have you done with your doctors? What were the results?
       
      • Agree Agree x 2
      • Friendly Friendly x 2
      • Good Question Good Question x 1
    5. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Hey JohnAdams sorry if you have explained this before, but how do you take this? Do you freeze the turmeric and take pills?
       
    6. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Same here, got tinnitus and hyperacusis in my early twenties and it got so severe within a few years that I had to drop out of college and basically became homebound. My hyperacusis has luckily improved during the last two years but my tinnitus is still at its severe level. It's insane how debilitating these conditions can be. You're definitely not lazy, whiny or weak-minded. Unfortunately, too many people don't understand how severe these conditions can be, even people that have experiences with tinnitus and hyperacusis.

      Have you heard of Lenire, a device by an Irish company called Neuromod? They released their new device against tinnitus three months ago in Dublin. I want to try it out as soon as they launch it in Germany. The University of Michigan und the University of Minnesota are working on similar devices to actually reduce tinnitus. We might actually see the very first medical treatments for chronic tinnitus within a few years.

      Also, about your hyperacusis, some might say that you should tough it out and just expose yourself to too much noise, but research shows that this doesn’t work for everyone and relapses can definitely happen. Speaking from personal experience I’d say listen to your body and try to introduce sounds slowly. People might say things like “everyday sounds can’t harm you” but that’s not true for everyone.
       
      • Agree Agree x 2
      • Hug Hug x 2
    7. Mila9828

      Mila9828 Member

      Tinnitus Since:
      08/01/2019
      Cause of Tinnitus:
      Accident/Screaming?
      Hi girl! I'm around the same age as you; I'm really sorry to hear that you're going through this right now. PLEASE, don't hurt yourself in any way or form. I agree, this situation is super shitty and it sucks. I suffer from tinnitus and hyperacusis as well. It does get better. I don't mean to throw age out here but we're young, the chances of our recovery may be greater than others. I got my tinnitus from an acoustic trauma following a stupid ear cleaning. My tinnitus fluctuates a lot, some days are better than others. My hyperacusis fluctuates too, it really just depends on the day. What has worked for me, and this is gonna sound stupid, is exposing myself to noise. On type of my T & H, I have pain in my ear and around my face/jaw, sometimes my temple on my head as well. It's painful and I want to cry all the time. A lot of people on this forum have talked about their H, and many saw improvements when they started to gradually reintroduce themselves to noise. Please do not let this take over your life. We're so young. Yes, I too have been suicidal, and it honestly has not gotten me anywhere. I wake up every morning with anxiety because of what I'm going through, especially because there's a lower volume in my affected ear and I'm not sure if it will ever get better. Life is beautiful; again I'm so sorry you're going through this, but just know that you have support, if not from your family, then from me. Keep your head up.
       
      • Friendly Friendly x 1
    8. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      ototoxic reaction

      Hello Keka,

      I can't imagine what it's be like for you to have been dealing with this for the last 8-9 years. Since you were 13-14!!
      That's a horrible deck of cards to have been dealt. I really don't know how to console you.

      I've only had tinnitus since June this year and already it has devastated me. Like you said, my entire existence has been reduced to one of immense suffering. I'm much older than you (49) and have two young children and feel i'm only still here for their sake. Like you, I don't know what to do. I've been bed bound for 3 months pretty much. My life has disappeared.

      What have you done in terms of finding treatment and relief? Hang in there, as hard as it is, things may get better.
       
      • Friendly Friendly x 3
    9. Peter61

      Peter61 Member

      Location:
      The Netherlands
      Tinnitus Since:
      08/2012
      Keka,
      There is a way of living with T and H. I've been doing it since I got it in 2012, due to loud noise exposure. It's a daily challenge, but it can be done. By simply accepting T&H and not making them bigger than they are, you take away a lot of fear and negative energy attached to them and you create piece of mind and space to breathe again. If you take away the negativity, and just "let it be", you might even forget about it for longer periods of time during the day. My motto is: Live for today, hope for tomorrow. Today is all we have, make the best of it. With hope for tomorrow I mean that there's help on its way. It might take some more years, but FX-322 is a serious option when it comes to treating the affliction that we have (www.frequencytx.com). As far as H is concerned, just use the earplugs when you are in a noisy environment. Not all the time of course, but only when sounds are just too loud for you. And if plugs muffle too much, try a plug in one ear and some cotton wool in the other. That's how I do it, you have to improvise a bit, because every situation is different. You'll get used to it, believe me, I've done it too. I admit that the quality of life for me is not what it used to be anymore, but to me life is still worth living. If you meet someone, just explain him or her your situation. The right person will understand it and fully accept you, with or without the hearing issues. You're not alone, people here understand you because we are all in the same place.
       
      • Friendly Friendly x 2
    10. Peter61

      Peter61 Member

      Location:
      The Netherlands
      Tinnitus Since:
      08/2012
      piece of mind = peace of mind.
       
    11. AUTHOR
      AUTHOR
      keka
      Wishful

      keka Member

      Tinnitus Since:
      08/11
      Cause of Tinnitus:
      benzo withdrawal
      Thank you all for your replies. It's a good feeling to know that someone actually listens.

      John - I haven't tried turmeric or curcumin yet, but I will for sure. It would be a dream if it reduced the intensity of tinnitus even a little bit...

      Daniel - I talked to my orthodontist a couple of months ago about the mouth guard; she said that my misaligned teeth are the real problem and suggested that I should wear Invisalign, and not mouth guard since that ''wouldn't change a thing''. I honestly do not believe her. I think she just wants to rip me off and doesn't really give a shit about what I'm telling her. Hyperacusis does get a bit better sometimes - but the setbacks always happen, and that sends my already hypersensitive nature over the roof. As for the diet, intake of sugar or caffeine doesn't really make it worse, so at least that's a one good thing...

      Greg - The tests I've done are pretty much MRI, hearing test and all that standard stuff. All the ENTs said that I don't have any hearing damage, but I don't believe them, since I obviously do. Sometimes everything sounds strangely muffled; the music can be so distorted that I turn it off immediately. What a mockery of my once great passion... I don't know what other tests I can do :(

      Mila - Thank you so much... I will be here for a little bit longer to see what else I can do. I think you're right about gradually exposing myself to sounds - I've been overprotecting my ears, maybe that's why almost everything sounds so unbearable? I guess I just got used to being locked up in my room... God I hope we all get some relief.

      all to gain - I feel for you - this condition turns your life upside down. Since your tinnitus is still very fresh, there is still a chance for it to reduce on its own. I've read somewhere that it doesn't become chronic until 6 months... I have tried the usual - various kinds of supplements, vitamins, psych meds and all that but sadly didn't get any relief from that. At this stage I only hope for a miracle. For all of us who are suffering.

      Peter - I'm really trying to reach that state of mind, but it hasn't been successful so far. I guess I just don't have that mindset... Even if I do feel better about this for a minute - the next minute I get back to the usual wallowing in self pity. I just can't seem to accept this.
       
    12. fishbone
      Shitfaced

      fishbone Member Hall of Fame

      Tinnitus Since:
      1988
      Cause of Tinnitus:
      loud noise and very bad sickness
      This is the area a lot of people have trouble with. It's hard to accept noise coming out of our heads. Even I, when I wake up say "THIS IS SO LOUD". I give myself 5 minutes to vent if i want to and then get up and take care of my daily duties. It is very unfortunate that we have gotten afflicted with such a horrible ordeal. I have tried every thing under the sun in my 31 years to make life manageable with this intrusive T and Severe hearing loss I have. It takes LOTS of efforts but something can eventually work for us. (Work does not mean it will go away, it simply means that we can move forward with our lives. It's a slow process, but it can move us forward day by day.)

      my family had no empathy for my T as well, It's very hard. YOU have to pave your own path. Avoid negativity whether its a person or a place. T is a mental thing and it can get more aggressive/louder with stress/anxiety/negative emotions

      It's all about coming up with a game plan/routine that benefits your life and your tinnitus(so it does not get louder). Talking things out with someone that cares and listens is one of the most valuable asset any T sufferer can have. Meds are not always needed, just talk it out and express your feelings.....

      Life with tinnitus takes LOTS of adjusting, it's a slow day by day ordeal....Be well.
       
      • Hug Hug x 1
      • Friendly Friendly x 1
    13. JohnAdams
      Wishful

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I just take the supplements when I eat dinner.
       
    14. all to gain

      all to gain Member

      Tinnitus Since:
      June 2019
      Cause of Tinnitus:
      ototoxic reaction
      I'm new to all this. What does turmeric and curcumin do? How much do you take of each and what brand or does it matter? And importantly, what are the side effects?
       
    15. JohnAdams
      Wishful

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      It is anti-inflammatory and also does some stuff that regulates how our nerves work, for the better. It doesn't work on all types of tinnitus but it works very well for me and others. I'm not sure the brand matters. If you take it at normal doses I don't think there are any side effects.
       
    16. Agrajag364

      Agrajag364 Member Benefactor

      Tinnitus Since:
      09/2017
      Cause of Tinnitus:
      Unknown
      Ok but do you buy turmeric/curcumin paste and freeze it or buy pills?
       
      • Like Like x 1
    17. JohnAdams
      Wishful

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Nasty Swamp
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      pills
       
    18. Lynny

      Lynny Member

      Tinnitus Since:
      December 2018
      Cause of Tinnitus:
      Unknown, possibly stress
      Hey @keka,

      Wow, everything you wrote resonated with me. I’m in almost the same situation. Most of family is luckily quite understanding, I have one 18 year old brother that purposely makes sounds to bother me, sometimes makes fun of me because of my obsessive behavior and gets angry at me for not wanting to be in complete silence (i.e. putting on classical music/ ambient noise). Other family members are mostly kind, but I feel they’re getting tired.

      For them it’s hearing the same story over and over again, for us it’s a new type of hell every single day.

      This feeling of watching (other) life pass by outside your window is literally and figuratively a very accurate depiction of what this feels like. Nostalgia/‘homesickness’, too: you’re grieving over a past you used to have and a future you (feel like you) won’t have. It hurts like hell.

      Perhaps Lenire or something similar will bring you some relief in the future?

      Anyway, we’re about the same age, I’d love to get in touch. Send me a message.

      I pray things will get better for you.
       
      • Hug Hug x 2
      • Friendly Friendly x 1
    19. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      @keka Have you had a complete count (CBC) - a blood differential test?
      Answers for you may be found with this testing.
      If so, could you provide any positive results which is really negative results.
      I have a few thoughts from your head colds that may show a wide range of immune variables which could be corrected. Those values may be as simple as a vitamin being depleted to an immunity type infection.
       
    20. Daniel Lion
      Ape-like

      Daniel Lion Member Podcast Patron Benefactor

      Location:
      SE Asia
      Tinnitus Since:
      2017
      Cause of Tinnitus:
      Noise trauma, hearing loss
      Get a second opinion from another orthodontist. It sounds like this is the source of your tinnitus. Try and fight to get to the bottom of this, then help is possible. Get another person or two to check. It’s really important.
       
      • Agree Agree x 1
    21. Cape crusader
      Cool

      Cape crusader Member

      Tinnitus Since:
      09/18/18
      Cause of Tinnitus:
      Microsuction ear wax removal
      @Mila9828
      What type of ear cleaning did you have done?. Mine was microsuction. It caused my tinnitus and it cost me over 60% high frequency hearing loss.
       
    22. AUTHOR
      AUTHOR
      keka
      Wishful

      keka Member

      Tinnitus Since:
      08/11
      Cause of Tinnitus:
      benzo withdrawal
      I will actually go soon to get it done. I really really hope they find something bad!!
       
    23. Candy

      Candy Member Benefactor Advocate

      Tinnitus Since:
      06/2016
      Cause of Tinnitus:
      Unidentified
      I feel your pain but please try and stay busy... it does help. You can’t judge the level of your tinnitus when you are at home not engaged and not busy. If you are in a position to be productive it will empower you, you will be doing while dealing with a chronic condition. You are young and they will have this figured out in a few years... you will make up for lost time.

      Advocate in the meantime, blog, instagram, let’s make sure everyone knows we want a cure. And make notes of the good things every day x
       
      • Like Like x 2
      • Agree Agree x 1

Share This Page

Loading...