Where to Next

Hi
I have lived with T for about 22 years-penicillin injection when I had meningitis. I have managed to cope with lots of exercise and eating like a rabbit. Lately it has become worse as I have got older. Lost my job and am not sure of applying for a new one, since one cannot walk into a company saying one has a disability.

The worse is the T makes me so tired and I can sleep most of the time. By the way the wife and kids also left-could not handle my ups and downs and my anger.

Any thoughts

Johnny

 

Welcome Johnny,

So sorry you're struggling and have lost so much! My heart and prayers go out to you.

However, you're in the right place for support and sympathy. We all have T and some worse than others. Mine is a high pitched screamer most days, but have a few lower days in between. It's a challenge everyday. I'm sure you will read some of the forums, especially the success stories. Some here, have had T for 40 years! They have managed and live normal lives.

For me, the best thing is keeping busy and being in areas that are somewhat noisy. Like the beach with waves and public places. There's a great Tiki bar here, right on the water and they have live entertainment, with mostly solo guitarist / singers, so not to loud. I also have a pool at my home, with jets above water, that help mask my T. Whatever it takes!

I've had to create, places and spaces, to help mask my T, to get some relief. So, after 22 years with T, you must have developed some coping skills. Try and work with those as a base and make some tweaks, now that you T has become worse.

Maybe it's spike, that will subside and return to baseline after a while?

I too eat a healthy diet and take whatever supplements that seem to help lower my T. You'll find on this forum, what seems to work and not work for people. I take a B complex, B12, vit C, magnesium oil, calcium, fish oil, NAC and some zinc.

I also go to an acupuncturist and take Traditional Chinese Herbal Medicines, which seem to help.

For sleep, I take melatonin, 5HTP and L-Theanine. I use a sound machine on my bed with nature sounds. I sleep well.

I hope you find help here and browse through the various forums for ideas on how to cope and manage your T more effectively.

God bless,

Sailboardman

 

Thanks for the input- I have not tried some of your suggestions-I am going to do so. I suppose I am hoping for this magic pill that will instantly remove the T-that's what I have prayed for. Somehow it has not materialised.

And obviously being on this forum helps somewhat because people can relate to one another-something my family and wife have no clue about.

regards
Johnny

 

Hi, I just came onto this site a short while ago. My husband had no clue what I was dealing with. I went into YouTube and searched for "What tinnitus sounds like" I played it for him when I found a video that represented that nerve wracking noise. He could not believe it! no one can understand unless they have been through it. But this site is fantastic and has great information. Stay strong and gather up all the information you can.

 

Hi Johnny, I too am sorry to hear about the things that have happened with you. I haven't had the T no where's near as long as you have, but I do know about the emotional ups and downs with it. I feel like a different person most of the time, always serious and more cranky. I spend much more time alone now than I used to. Sailboardman is right about trying to stay busy. I too need to take his advice. Please hang in there and check this forum out on a regular basis, the folk's on this site are here to share information, and for supporting each another. God Bless......... Rich

 

Thanks guys the issue I am dealing with is that to get my wife to even read a thread on this forum is a mission, never mind trying to get her to listen to sounds. If there was only that one drug or magic pill-like taking a headache tablet and its gone.....

T should be classified as a dissabilitation which means people with T who could no longer cope should be granted disability when leaving work - at least I would had income from my pension fund for my life time.

I did approach the health and wellness person at my work and she laughed at me when I suggested dissabilitation.
regards

 

I got my husband to listen to it via my phone after I got into YouTube. I was sitting casually on the couch with him one night and put it out there. The look on his face was "ok he gets it now". Even my sister who wears hearing aids didn't get it till I linked her up to this site. I do believe the world is waking up to the huge amount of people globally who struggle with T. I never heard or knew of Tinnitus till Feb 17 when I came down with this roaring in my right ear. But I am coping as best I can. The roaring has stopped and has turned into a hissing, high pitched sound. Sometimes it seems to be gone. But I saw my Family Dr. Yesterday after getting a hearing test from the audiologist. I have sensory loss more in my right ear. He said that in my case, hearing aids would help a great deal. I am going to consult with the hearing folks again and see what my next move is. I know my hearing has been going downhill as I am 61, but I am beginning to suspect the attack of roaring T may have come from seeing a war movie at the theatre. I kept holding my ears because the sound was actually hurting my ears. Have you been to an audiologist or Dr lately?

 

Robin I am due to go Tuesday next week to clean out my ears of wax-normally a get huge pieces that build inside the ear canal-I can sense that the ears are full of wax hence my T is worse as I write-

I am distraught at the moment since the T has made me a morbid person and I have a sad look on my face most times-one that looks tired as well. Its difficult to smile when one constantly feels uneasy-I mean if I knew I had cancer and had 2 months to live well then be it-with T I could live until 80+ and still have it-it has messed up my life - I have become angry and frustrated-I keep asking God why or why not just allow me to move on to the next world.

Over the last 4 weeks I attempted to cut my wrists (did not work), then I took tripinol and all it did was it gave me bad nightmares-then I took about 37 panados (pain killers) and that made me stomach so sore-I brought up the whole nite-so suicide is not easy but having to wake up to the T is not easy either.

I mean the above is bad but I would rather not wake up in the morning-quiet honestly. I will chat to my Doc nest week-but I believe he will not have to many answers for me. If you have any other suggestions-I would love to hear-I feel most times life is not fair and we should be given the right to switch off the light if we are not enjoying life..... so I don't have all the answers for myself....I was a dedicated Christian and have given up on God long ago....what else do I tell you....its comforting to have someone to talk to if anything...please keep writing.
Johnny

 

((((huggzzzzz))))))) I suspect that you are going through a whole lot more than T. You wrote of your wife and four children and being separated from them because of the T. You also wrote about the loss of your job. You mentioned God and your lack of faith. You have written about cutting your wrists. You have a lot on your platter!! Is everything a result of the Tinnitus? I have a feeling that if you have been coping with T for 20 something years, you ARE A SURVIVOR! Life does have a way of throwing difficulties at us when we don't even expect it. I have been through some very difficult times in my life. Just when things were getting normal and predictable, BAAM, hello Tinnitus!! REALLY I SAY TO MYSELF. But you know what. I LOVE LIFE. AND This T ain't going to define who I am. I am pissed off but I am determined to use any and all resources available to me to get a handle on this thing. I intend to live a lot more years and enjoy the things I love. Art, music, meditation, nature, my wonderful husband (second time around) my lovely daughter, my lovely home WHATEVER. Maybe you need to focus on You for a while. Don't worry about the rest. You need to love you. Because you are so worth it. Get some help. You can overcome this but it is up to you and only you to make the choice. You are not alone.

 

Johnny,

I have seen the dark side and I know exactly how you feel brother! I am not the same person I was since T invaded my peace and quiet. That's for sure!

Back story. I moved to sunny Florida about 3 years ago and have a nice home on 2, ultra quiet acres. I worked in NYC all my life and looked forward to an early retirement and to have peace and quiet at last. 16 months into my new life here, wham T hits me like a freight train in one night! No warnings, just there the morning of April 21st 2014. The day I believed my life ended. I also had thoughts of "S" for many months. I was angry, confused, mad at God, hopeless, helpless, asking why me, why now? My anxiety and depression was through the roof. I said there is no way I can live with this very long. I Lived in the past and would say, "wow the last time I saw this or did that, I could hear and had no T." My life was perfect before T. Now it's ruined! What a way to retire. I felt robbed.

However, I didn't abandon God and hope. in all my daily struggles and torture with this demon, I go to bed and think, maybe tomorrow, I'll wake up and it will be lower or gone? I know I'm only 11 months into this thing, but maybe, just maybe, I'll hit on something that will ease the pain. One night I stumbled onto this site and immediately became a member. I believe, Karen and billie48 were first responders. I felt so relieved that I was not alone and struggled like so many others. This site has kept me alive and away from "S"!

One things for sure, if you're dead, there's no hope. Not even one particle of hope exists if you're gone. I can tell you, I have days where the "S" thought dangles over me, like the sword of Damocles. But I get out of the house, get in my car and head for places and people with tons of distractions. At the end of the day, I pray and tell T, you didn't take me down today you little F..K!

I am also a member, of my of a local Tinnitus support group, here in Sarasota and have seen people, like a guy who is a Vietnam veteran, who has T and hearing loss so bad, he's lost his ability to speak clearly. But he volunteers to drive disabled people, to places they need to go. His forearms are full of scares from previous, attempted suicides, but now he says, "I will not give into this demon, no matter how bad it is."
He says he likes to have a few beers with his buddies and won't give that up. I tell you he's a mess, but still functions, after having this for over 40 years!

You might want to consider asking your Doc for some short term anti-anxiety med, like Xanax. It has worked for me in the past. Also, seek some therapy. CBT, Cognitive Behavioral Theraphy, seems to help with most people's association with T and it's relationship to reality. I'm currently seeking this out myself. I believe, I need help to push me closer, to my goal of habituation. I know I can't do this on my own. That's the first step for me acknowledging, it's beyond my mentality, to accept and cope with this. I don't have the tools.

Johnny, please, keep it together! I know it's so hard to do, but there are so many possible breakthroughs coming along, that we all may get lucky and our suffering, will soon be a thing of the past!

You are in my prayers, brother.

God Bless,

Sailboardman

 

Yes I am-when I had meningitis, the doc drew fluid out of my spine-they damaged the l5/s1 vertebrae-I had my lower back fused-so now imagine an uncomfortable back or sore back if I stand for too long a period together with T-the combination is unbearable-I wear glasses (short sighted)-and the T seems somehow to effect my eyes-they get tired constantly-I was sitting at the PC for over 10 hours everyday-sore eyes and T-bad combination. And with the sitting my back was uncomfortable-so I have been trying to manage all 3.

By the way I have 4 kids-the anxiety to ensure they have enough to eat and school fees are paid etc-the whole thing just got hold of me-So yes it is more than just the T.

My work required a lot of reading presentations travel (40 times in one year) on an aircraft-so it was all overwhelming-just to make sure my family was gonna be ok.

But I can no longer do it-been at home depressed for over 2 months-just have to find my feet again-OH and no family support-they all think I am to too concerned with money-well now there is no income soooo...

 

Welcome Johnny to the board. You have received excellent advice from fellow members. I can't add more to their advice. I can only share my own experience of my struggle. Hopefully you won't easily give up. I feel for your situation. Things are not going well and you are not having the support of the family as well as losing the job. Sometimes, there are the low time in life that can really test the soul. Don't give up. Life is full of ups and downs. There are always people who have worse lot in life than we are. Every time I saw a homeless person or a young child with handicap or a blind person groping in a world of total darkness, I count my blessings despite my ultra high pitched dog whistle T blasting most mornings when I wake up. Life is not fair and imperfect. But there is also much beauty in life if we pursue it in the spirit of positivity.

A few years back, my ultra high pitch dog whistle T and severe hyperacusis turned me into a mess. They also triggered relentless anxiety and panic attacks on auto mode, from the minute I woke up to when I went to sleep (if I could sleep at all with sleeping pills). I was paranoid to wake up to repeat the torture cycle. Yes, the big 'S' word was dangling in front of my tired and stressed out mind often, as it saw no way out of the mess. It was a tempting way to get out of the dark tunnel, until I watched some videos on youtube of people's terrifying experience on the 'other side' after a near death experience due to attempting suicide. There are so many people reporting the same thing that convince me that no way I want to try that one-way ticket. I rather stay put to deal with this temporary 'hell' than to risk otherwise.

I decide then that I would try to live at all cost. I use the approach that, if I can just find examples of people who have survived severe T (and H too in my case), then I know it is survivable, and I would use their attitude, strategies, philosophies or whatever they rely on to help me soldier on with T & H. Additionally, I used examples of people surviving the endless tortures of Stalin's Gulag to help motivate my fighting spirit. I searched internet with people dealing with acute chronic pain to see how they cope (there I found Darlene Cohen who survives her pain from young 20 to near 70). Ultimately, I searched for people with loud and unmaskable T to see how they can survive this ordeal. Well some people with deafness are known to have unmaskable T. One lady actually was in the same area I live. Through our conversation, she had survived 12 years of unmaskable T due to partial deafness, been to ER a few times, lost her marriage, on Klonopin for this long too to cope, but she has survived her T and now moving on.

Another one just came to the support forum I was in back then to introduce her tinnitus film. She is an attractive, young lady Zoe Cartwright with loud and unmaskable T which she described as *^%$#@! loud. Her T became unmaskable since she became completely deaf at 15. Somehow, bless her, she manages to choose acceptance over resistance and move on to pursue her goal to attend university. Against all odds, she made it. After 10 years of the unmaskable T, she made the tinnitus short film which I already posted about on page 15 of the Positivity Thread. The film title of 7.24.52.10 was chosen because she said her loud unmaskable T was for 7/24, 52 weeks a year for 10 years at the time of the film. She survived it and even said she loves her life. Amazing and shocking to me, honestly. How did she survive that endless noise in her waking hours all these years? But she did it, believe it or not. Is loud T really that unbearable or is it my acute negative reaction causing it?

Well, her example is enough indication to me that with a certain attitude and approach and a persevering human spirit, T is survivable and livable. That is enough guiding light for me to decide to take on these T & H bullies and stay put & fight them on my feet. By fighting, it doesn't mean by more emotional or negative reactions, but by emulating what others have learned to do - acceptance (not accepting T but the reality of T in my life), positivity (I was very negative person before, hence my years of living with anxiety and panic disorders), patience (letting the body to have enough time to heal), strategies (CBT, mindfulness meditation, abdominal breathing), finding joy amid the pain (willing to peacefully co-exist with T and yet living life abundantly to compensate for any suffering from T). And you can add to that whatever you like to enjoy.

Perhaps with your bad back, try some swimming and gentle leisure walk in the park for your bad back. I have a bad back too. Once I hurt it so bad I had to be hospitalized and then was bedridden for 4 days. The next time I hurt it again I laid down for 12 days with excruciating pain. But slowly I did swimming, leisure walk, stretching exercise, strengthening exercise etc. Now I can go fishing, gardening, dancing, even some light lifting. Believe it or not, I over did it on lifting some garden compost soil a few days ago, and now my back tells me what I did wrong to it and why I forget about its history. LOL. Well, I just ice it and stretch it, then slowly it will give me back some flexibility. I will focus on what I can do positively about it now then worrying about it or getting depressed. There is always life still to enjoy for us guys with bad back. Cheers.

Back on T, I have learned the wisdom from a war veteran who replied to my inquiry how to live with T long term. He said, 'I am a soldier. I fight for a living. But with tinnitus, I have learned to ACCOMODATE it, and not to fight!'. What wisdom from a professional solider. I learn my lesson and apply the wisdom. In a few years, the tyranny of T over me is over. It still scream its lung out but me and my body don't give a dime to it now. Don't know how. It just happens over time when I stop resisting T. T can go to hell while I enjoy my earthly heaven. Don't give up the fight and don't give up on God, bro. If I Who Love Music can be back to silence after 40 years (per his success story post Back to Silence), you can't rule out anything and in time the medical world may come up with a solution. So hang in there. God has not forsaken you. So don't forsake yourself too. If you are interested in my success story post, you can read it up too with more detail about my journey with T & H. Take good care and God bless.

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

 

Billie thanks sooooo much for your input-it is so strange that those living with the same issue (T) can relate and show some kind words.

Just last night I spoke to my sister and told of my struggles-she kept saying, go and see a doctor-I repeatedly told her I have and to date there is no cure, she refused to believe me and said again go to the doctor he will help you.

The honest truth about my family is that my anger and frustrations from my T and back were being taken out on them and that's not fair - so I have spoken to my wife to try and explain the frustrations-it has not been easy. Your words are inspiring and yes the trying the S method is not easy - it is so frightening.

I will look into your link above most definitely.
Bless you too
Johnny

 

I hope things are better for you today. I don't know what the answer is for you but seems the people most close to you need to open up their hearts a little more to understand that you need support and love, not hostilities. My heart goes out to you as I can hear you have suffered greatly. [[[Huggzzz]]]]] If I don't like one Dr. I just go to another or another until I feel satisfied.

 

Robin thanks, it seems that always is the case-those around that live with you and see your pain are the ones who least understand. My day has been better as mentioned I am due to go to the ENT and get my ears cleaned -always helps with the T-thanks for the huggzz I really appreciate them.

Tell I tried e mailing the greek professor at pittsburg university-Thanos Tzounopoulos-he is doing the research with the mice etc-are you aware of this guy-he never answers e mails though.

Do you know of any other research that may be happening in the US-as mentioned I will as my doc if he is aware of any progress within T research.
God Bless
if u ever want to e mail me I am on jguilherme@mweb.co.za