3 Months In and Going Strong!

Hello Friends!

I have had tinnitus just shy of 3 months now and felt I should probably introduce myself since I found myself to be a regular stalker on this forum in the early days. Let me just say, it really does get better. I know, I found that hard to believe but it does. My tinnitus decided to join my world after I came down with a gnarly flu turned sinus infection. It is a combination of electrical hissing in my head and sometimes ringing in my left ear. My GP and ENT gave me antibiotics and steroids and told me "it will go away!" Well after a few weeks and it had not "gone away" I started to freak. Not eating, not sleeping, my anxiety and stress went through the roof. I lost 20 pounds in 4 weeks (and proud to say gained most back thanks to ice cream ) I went back to my GP and he put me on sleep meds and anti depressants. He also said and I quote "I honestly don't know how you get used to something like that" ummmm not helpful!! lol My ENT told me to "calm down" and I asked him to refer me to a therapist. I also did my own research and found a doctors office that specializes in tinnitus. They conducted a hearing test. My hearing is perfect. (apparently I can hear dog whistles). The audiologist was honestly a life saver. She discussed ways to reduce my anxiety and how to mask the noise. She also fit me for custom musicians ear plugs with filters that I carry with me everywhere. Every time I went to see her she would sit and talk with me for about an hour just to see how I was doing. This essentially is when I started turning things around. Like I said I am only 3 months in and hardly and expert but I just wanted to share so far what has worked for me so bare with me ...

1. GET MOVING! I can't say this enough. If I could scream it from a mountain top I would. I had been running before all this happened and stopped well because I thought it would make my tinnitus worse. I ran with head phones and music but feared that would make it worse. (obviously I needed to get my anxiety and fear under control). After chatting with my therapist and audiologist, I set my volume limit to 50% and laced up my shoes. See working out has so many benefits. You work out, you get tired and you sleep! You work out, you get hungry you eat! You work out, you release endorphins your anxiety and stress go down. See where I am going with this? my first weeks back running my mind only thought about the tinnitus. I would sprint the last quarter mile cussing every phrase in my head at the tinnitus lol but as time went on the tinnitus stopped being the main focus, and I really started focusing on going farther, faster and not dying lol So find something you love that breaks a sweat and get out there!

2. Sleep! I know this is easier said than done especially in the early days/months. Before tinnitus I slept with ear plugs because I am a very light sleeper. Obviously you all know that ear plugs makes it so much louder! (oh universe, such a funny sense of humor). I was barely sleeping. I was a zombie at work and my concentration was non existent. My coworkers started to become concerned. I would cry because I was so tired and my fear of tinnitus took over my whole world. my boyfriend started becoming very concerned and worried. My GP gave me sleep meds which actually seemed to make my tinnitus worse. So after a few weeks, I kicked those to the curb. Then I stumbled upon ear plug head phones. These baby's saved me. I would listen to pink noise and be out! Now a days I can sleep without them but always have them on a hot stand by, but always have a fan or white noise on. So find whatever works for you to help you sleep. Because once you start sleeping everything else starts falling into place and the tinnitus is much easier to handle

3. Get a handle on the anxiety and live your life!! This is HUGE! Pretty much everyone in the world of tinnitus knows about the vicious anxiety/tinnitus/fear circle. Its not so much the sound that scares us (but agreed its pretty damn annoying) but our reaction to it. My fear was that I was going to live in my house with a fan blowing in my ear for the rest of my life. Speaking with my therapist one day, she asked me what my goals were before tinnitus. I just stared at her because what did this have to do with tinnitus and how dare she change the subject to be something other than tinnitus since obviously it ruled my life at the time. But I answered the question: run 500 miles this year, run my first 10k, plant a new garden. She looked at me and asked me point blank "whats stopping you?" I had no answer other than being lame. Once I let the thought of this wash over me, I slowly started doing everything I did pre tinnitus. I went to restaurants, baseball games (go padres!), and my big one, my yearly pilgrimage to Stagecoach...a 3 day music festival. I had huge reservations about this. My audiologist told me as she handed over my adorable hot pink and white swirl ear plugs "Go. Have a great time, and most importantly..have beer." Who was I to turn down doctors orders! So I went...and had the best time!! my tinnitus remained exactly the same, no spikes, no volume increase. And I was having so much fun I didn't even think about it! So go do what you love! if its going to be loud, bring ear plugs! Laugh, live, drink wine, eat chocolate, spend time with the ones you love! OH, and DONT GOOGLE TINNITUS. Seriously, don't. There are far more horror stories than success, well because once people feel better and are living their lives they just forget to report back how well they are doing. If you do, just read the success stories. Success stories are the absolute best. The provide loads of hope when you don't think you have any (but you do, its just hiding )

4. Masking! Gosh this helps so much I cant event express it. In the beginning, I had a fan or some sort of noise on in every room of my house. At work I would have rain noise playing. (my office mate is a surfer so he dug it lol) But just knowing that the sound could be lowered or completely hidden at the flip of a switch was just such a relief. I masked all the time for the first month and a half. I avoided this back bedroom in my house because it was too quiet and my ears would just ring! Drove me nuts! But one day (after realizing I can live my life and was working out again) I noticed that I didn’t need the noise in the kitchen, and shortly after I didn’t need the living room fan on. I actually sat on the couch with my boyfriend, playing on my iPad with no fan, tv or anything else on. I was so happy I could have done a victory dance in the living room. The fact that I didn’t run out of the room screaming, holding my ears was surprising to me. Did I still hear the tinnitus? Sure did. But for some reason it wasn’t bothering me as much. I don’t know if the actual volume lowered or if I am just getting used to it. But it the end does it really matter? I stopped masking at work also (my coworker is bummed) and I still hear it from time to time, but I easily get distracted and forget again. Now I still have a ways to go, don’t get me wrong. I still mask in the bedroom, and always at night. And still turn on the fan if the tinnitus is bothering me too much when I'm watching TV but hey life is going to have its annoyances!


5. Get yourself a good support system! And I don’t care if this person is your significant other, a friend, a coworker, the homeless guy you give money to on the way to work. Just someone who will be there for you because let's get real, this is not easy. This is a mental battle (and physical if you aren’t sleeping) that only you are fighting. No one else gets it unless they have tinnitus themselves. My mom and boyfriend were amazing. As long as one of them was there to tell me it was going to be okay and give me a hug, it made things just a little easier. My boyfriend was living this fun with me. Being there when I cried, my sleepless nights, my anxiety attacks. At one point, I knew I needed to get better not only for myself but I refused to let tinnitus affect the best relationship I have ever had in my life. He got a break during the day, my co workers had me the rest of the time. I was so depressed, they would actually rotate coming in and talking to me (and to make sure I wasn’t googling tinnitus constantly...see don’t do it!) During this time frame, I actually discovered that 5 of my coworkers have tinnitus and you know what? Not one of them is bothered. Not one. One actually said you wouldn’t believe the noise my head can make...while he was laughing and then went right back to work. They said it got them in the beginning, but they adjusted and got used to it. I found out my aunt has had tinnitus for 25 years! My boyfriend's son (previous relationship) also has it. (he's a drummer) He is completely un phased and actually slept in that back bedroom that I used to hate in silence! Shocking right!? But he got used to it. So reach out to people. Let them know whats going on in your life. Its amazing how much things get better once you start reaching out. Also, finding a doctor/audiologist that cares is so helpful. GP's no nothing about tinnitus, so find someone that specializes in it. It really changes everything.


6. Time. This one unfortunately is the hardest and is different for everyone . It just takes time to adjust and accept that this may be with you for the rest of your life. Or it might not, who knows! Tinnitus is funny like that. But please do not give up hope. There is light at the end of this very dark tunnel. Having a positive mindset is very helpful. Just telling yourself that this too will pass and your bad ear days will get less and less (which is true!) also helped me. I started practicing mindfulness and deep breathing exercises. I do this in a silent room. In the beginning it was hard, but over time it has got much easier. I also started acupuncture! Now I am not sure if has done anything but my goodness who knew getting poked with tiny needles could be so relaxing?! Lol But in the end, time is on your side and trust that this WILL get better! Your life will be back to normal, if not better!! Just give it time


Well, thanks for listening to my rant! I just wanted to give a little hope to the newest members to this club. And thank you to the veterans on this forum(@billie48 I read your story at least 20 times ) and all the positive information you have provided. I still have tinnitus and still think about it regularly but not as much as I used to. There are periods I forget about it and giving it more time, those periods will get longer and longer. I don’t hear it as much as I used to and when I do it doesn’t bother me as much. Don’t get me wrong, it's not all sunshine and roses over here. I still have tough days but they are fewer and farther between. But my life is pretty much back to normal which makes me very happy and my boyfriend is glad to have his girlfriend back Please don’t hesitate to reach out if you want to chat! xoxo
Melissa

 

I think you and I have had almost identical experiences with this. So glad to know you are better. Good luck

 

Honey Bee....that was one inspirational post. Thanks. I've had T for about 6 years now but in March this year spiked and louder. I spent literally thousands on private clinic masking hearing aids which did little although I returned them before the recommended period so I can't really give a comment about that. Your attitude to the T is really uplifting. Thanks Honey.

 

Thank you both!! T is just such crazy experience and I have had so much support I just wanted to give a little back

And I seriously dig the dancing banana lol

 

What an awesome success story! Thank you @Honey_Bee for sharing it. I love reading story like yours which re-affirms what I have been posting about. I am truly glad that my success story post has helped you in your habituation process. Very often for a new sufferer, it is very hard, while the suffering is so much, to comprehend or believe that one can get used to the T sound and the brain can fade T out of consciousness at some point of the habituation. Yes, it takes time and each person may need a different time frame. But once you get there, then you realize that what the T veterans have been saying is true, and your story confirms that. New T sufferers should find hope and comfort in reading your story.

 

No thank you @billie48! I would see you posting on all the newbie threads and everything you wrote was so positive and reassuring. I thought this guy is onto something! I then found your success story and read it, and read it again and again lol every time I was down I would just re read it and I felt better. I saw a tinnitus specialist about a week ago for any additional treatment and she said "you totally don't need me you are doing very well" lol that made me feel good (but I keep her card on a hot stand by as an safety blanket lol). I have re worked my goal from a 10k to a half marathon..gotta work off that ice cream weight!

 

@ Honey_Bee , thank you for an amazing post. I have been hearing ringing on my left ear for 5 days now. ENT said there is no infection and asked me to wait 2 weeks. and as you know right away I started googling and reading up on so many things which made me more and more anxious. However, after I read your post, I think I am ready even if i have to deal with this for the rest of my life. I think If i can control my mind it will stop bothering me. Its funny when i'm out and about with my girl friend just doing random things I don't notice it at all. For instance, I was moving out last week and my girl friend was helping me and the entire time I was so distracted that I forgot my ears were ringing.

I have yet to get an audiogram since it has only been 5 days and ENT said to come back after 2 weeks so I am hoping that it magically goes away and i wouldn't have to go back but I am ready to face it if I have to. It is affecting my work and my person life. Since this is new to me, it is hard for me to train my mind. However, having people like you with great success with your technique i think I can do this. I am more motivated now.

I would have never thought i would be writing a post about hey its never too early. Also, on a side note i'm from San Diego as well. This might be a long shot but what do you think about starting a club in the San Diego area. I think personally for me what helps is talking to people. let me know what you think.

 

Hi @Dev and fellow San Diegan! (Spelling? Lol) I would love to say I don't know what you are going through but been there! It does get better though! You are so new yours has a good chance of going away still. An audio gram is always very helpful. I had 3. They allllll said the same thing. My ENT thinks my ear was damaged when I was sick a few months back so hence Tinnitus! If you are already having periods of forgetting, that's amazing! I found two amazing audiologists in the area. One has tinnitus herself so that is very reassuring talking with her. She rarely heard hers and actually has to try to listen for it. She is very positive and helpful providing many different treatment options depending on the person. I saw her 3 months after and she said I don't even need her with my progress lol I have emailed her during a rough patch and she responded right away. She's great. Let me know if you want her info . But I know this is hard especially in the beginning. Hang in there. Working out was probably the best thing that I did. It kinda helped everything fall back into place. I still have days where it annoys me more than usual, those days I'm usually tired, stressed, didn't workout , eating bad lol I almost use it as a meter to how I'm doing lol my audiologist said it usually takes about 6-18 months to habituate to so I'm still a work in progress but you for sure seem to have the right attitude!! And that's huge!! Postitivity works wonders. Along with time! Don't be too hard on yourself and do whatever you do, sleep is very important also. If you would love to chat, feel free! (I'm in a very boring meeting at work...lol)

 

This post is so ridiculously good it made me want to write an inspirational post myself, except I find it hard to find anything to add to this! You're probably off the forum now Honey Bee so you're likely not reading this, but 100% agree on all points. Should be obligatory reading for anyone going through the anxiety and despair phase really. Gangsta check B.

 

Thanks @Xynic! I haven't been on lately and was surprised to see an email notification Glad you agree! It has really worked for me. Hope you are doing well!

 

The success story is then, that you've learned how to live with it..

Congrats. That is an accomplishment.

 

Great post Honey Bee, always great to read another very positive story. My ears have been ringing for about six weeks now, and I can say that while my ears havent really gotten any better, the ringing doesn't bother me anywhere near as much as it did those first three weeks, which was a very dark time for me. Reading posts like this one have helped me immeasurably, and although I know it's still early days, I feel like I'm slowly starting to emerge from the awfulness of this condition.

 

Update: things are great! Survived my year mark with tinnitus. Just came back from my annual pilgrimage to stagecoach (3 day musical festival) and as usual...it was amazing! I have learned a lot over the past year, but basically to have a little faith and know that this too shall pass. My mom actually admitted to me the other day that she too has tinnitus but wanted me to figure this out for myself (tough love much?! Lol) but I love her for that. My boyfriend proposed and we are getting married! We also rescued an Australian cattle dog shepherd mix. Man you want to forget your ears for minute...rescue a dog lol. but he is the absolute love of my life my tinnitus has sort of become a meter for how things are going. If it's louder than normal, I am more often than not not taking good care of myself. It reminds me to slow down, maybe go get a run in, maybe don't have that third piece of cake lol and remember what's important. So newbies...hang in there! It gets better...promise