Hi, I'm New and Could Use Some Help

[reinergirl]

Hi all, I've been lurking around this forum for several months trying to read the positive stories but after a particularly difficult few days I decided to join in.

I am very new to all this, in the beginning of December 2016 my ears suddenly became very full and clogged feeling.

A few days into it my ears started ringing, I brushed it off at first figuring it would go away when my ears cleared up.

I went to my Dr who said I had no infection or virus and referred me to an ENT and Audiologist.

The super full and hard to hear feeling subsided mostly(although my ears crunch and make weird noises everytime I swallow and always feel slightly full now)and now 5 months later I've had a roller coaster of a life.

A little history on me, I'm 38 never ever sick, extremely healthy lifestyle, very active, perfect hearing when tested in December, I don't shoot guns/attend loud concerts/use ear buds....basically this is a huge mystery.

The ENT said my ears are perfect but since I grind my teeth, inflammation from my jaw joint is likely causing the noise and feeling of fullness so he referred me to a TMJ specialist.

Fast forward several months, the noise in my ears is still quite noticeable and maybe not really improved at all. The perception aspect of it is really frustrating, I don't know if it's better, worse or the same.

There are times when I legitimately know it's quieter but sometimes it's just my reaction that's better. In the beginning I was absolutely horrified at the noise in my head and couldn't fathom living the rest of my long life dealing with this, my life felt extremely bleak and awful to say the least.

Through the months I experienced horrendous anxiety and then depression neither of which I've ever experienced before in my life.....I didn't even know what the anxiety was, I had to be told that's what I was experiencing.

I went to a counselor for the anxiety and he was intially very helpful and while I'm much better it still lingers.

I've found the Headspace meditation app extremely helpful! The sound in my ears has changed so many times I can't count, the volume/pitch/tone have been all over the board.

Initially it was my left ear, then my right one for the bulk of the time and now the last 2 days my left one feels oddly full, sort of like I can't hear out of it as well which is really scaring me and the white noise I normally hear from it has gotten very loud.

The right ear is more of a high pitched/electrical sound.

My husband has had Tinnitus for as long as he can remember but he's of the "doesn't give a s*** about it" variety and is fully habituated....he actually didn't even know the term Tinnitus and until I got mine I didn't even know he had it because he'd never mentioned it to me....even after 11 years of marriage.....now that's habituated and I couldn't be more jealous! He's extremely supportive and keeps telling me that when my jaw heals and the inflammation goes down it will get better or go away,

I'm at the point where frankly I'm getting sort of tired of hearing that....I really don't think it's going anywhere at this point and it just makes me frustrated when he says stuff like that.

I can tell my TMJ specialist is also frustrated that I really haven't improved. The TMJ specialist wanted my ENT to refer me to an MRI to make sure of no Neuroma, ENT said he would have no problem referring me to one but that he didn't think it was necessary so I didn't do it.

Now with this spike and weird feeling in my left ear I'm thinking that I should have just in case. I did have a CT scan at the TMJ doctor a few months ago which didn't reveal anything.

So tonight after months of starting to sleep a little better I woke up after 3 hours with so much noise in my head and tons of anxiety, when I move my head on my pillow it shrieks in my other ear and I just couldn't stand it anymore so here I am in the middle of the night on my computer.

I've not been very positive mentally about all this but the last month I've been really trying to not worry so much and replace negative thoughts with positive ones but I'm really struggling these last few days and could use some help.

 

[Mettafort]

Hey @reinergirl,

Thanks for sharing your story. I have a similar issue to you I think - at night when I move my head, the simple friction against a soft pillow on my good side, causes my tinnitus to start jumping onto the night stage singing as loud as it can. Then I get into a mode of thinking that I need to get to sleep, and get anxious its not happening, and then tinnitus or not, now my mind is wild dancing with the worry.

Whats your biggest concern/worry right now, cognizant you now have a full left ear which is a recent change? Are you at all bothered that you havent had an MRI too?

mf

 

[reinergirl]

Hi @Mettafort thanks so much for responding. Sometimes it's just nice to know I'm not the only one out there struggling although I wish no one was Yes, I am bothered that I didn't get the MRI so I'm actually going to call and get the referral this morning. I know that it is highly likely that they won't find anything wrong but with my personality type I think it would be best to just know for sure, ya know? When this first started I actually got sleep anxiety and one week only slept about 8 hours total, I was a basket case and honestly thought I'd never sleep again and I'd die from it, ha! I've been a great sleeper my whole life so it was hard to get used to. These days I sleep about 4 or 5 hours and then wake up, can usually fall asleep but as morning wears on I wake up more often but I'm not tired and fall asleep within minutes. You should check out that Headspace app, its been more help than the CBT therapist I was seeing!

I was actually starting to do better, even with little ups and downs day to day....I considered it a win when I would notice that I hadn't thought about it for even a few minutes because it's dominated my thoughts 110% for months now. So waking up yesterday with this clogged ear and really loud noise just sent me right back to the wondering/questioning/fear/freakout-hysterically-crying that I had for so long. It's one thing to get used to constant sound or even little fluctuations but geez give me a break! I'm not really a negative person about most things in life but with this I really have been, not to mention I'm extremely stubborn and want to "fix" everything and won't let it go until I've done so.....I exhaust myself

 

[Mettafort]

Hi @reinergirl,

I hear you on just knowing one is not alone; thats been a great crutch for me too at times. I think its good that you are taking action on the MRI - it would be on my mind for sure, given my personality type too. I like how you have a "ha!" - keeping things light helps. The problem with sleep is interrupting REM sleep. If you can get some decent deep sleep thats definitely good; interrupted sleep is a problem. People with non-diagnosed sleep apnea for example feel fatigued all day long unware that they are interrupting their sleep for a second or so to take a breath, but its enough to interrupt restful sleep and cause them to feel tired and moody...moody is then the real problem, since a good mood helps with coping. I have the Headspace app actually, and I have Calm too. Both are great. I will say thats a shame about the CBT therapist; you might have more success working through a CBT/ACT book instead to be honest, since CBT is very pen n paper anyway.

While your second paragraph talks about your recent struggles, its laced with so much for you to reach into. Focusing on the wins is crucial - remember, we are wired to think of negatives, so every time you refuse to think negatively you're helping yourself stay positive. I am sure waking up with a new situation, especially given that time is such an unknown with individual cases, would be a cause for some initial alarm. But you have done beautifully well in the past - proving you have what it takes to get through this too. If you can tap into those areas of your life where you are way more on-fire and positive, and use the same resources here, that would be a real boon. You have managed to get through this up until now, and for sure you will continue to get through it. The MRI will bring peace of mind too. One less thing to obsess about, consciously or otherwise.

I may have misread, but it sounds like you feel in a better place when you feel like you have some control over whats going on in your life; theres no judgement there. I am the same actually. My T/H is variable on daily basis, so what has helped is for me to embrace the uncertainty of it all, including any wild idea I have of getting OR NOT GETTING my hearing back. I have let go of all future expectations about my condition. It took a while, some good CBT exercises, but I am done with it. I feel that has helped me cope profoundly better by just dealing with each day as it comes.

"Fix"ing everything is a very masculine energy (we all have both masculine and feminine); maybe a way to anchor yourself into something wholesome is to treat yourself to something, pampering or spa or something where someone takes care of you. I see you have a horse profile picture - my wife rides horses; I see the memes daily

Regardless it seems like you are taking positive action which I think is the DNA to coping, so well done for that.

mf

 

[reinergirl]

@Mettafort Wow for being so new to this you have a pretty amazing outlook! I admire that and am trying really hard to be more that way. I actually got tested for sleep apnea by the TMJ specialist along with a CT scan and a zillion other little tests and so forth....I am 0% sleep apnea which was no surprise to me. I too was worried about not getting in enough sleep cycles and the effects that can have on your body. On the other hand I have more friends that I can believe who only sleep an hour or so at a time or only a few hours at night and they are all fine and in good health but it still blows my mind! I really like my sleep so when I would wake up every 2 hours I'd get really upset and frustrated. I tried to let that go and my length of sleep time has definitely improved in general. I own my own internet based(and yes horse based too) business so I work from home, while I've done this for years it's been hard ever since all this....just being alone with my thoughts ALL day long, it's nearly impossible to not let my mind drift to worry and obsessively thinking about it. You say it took you a while to let go of future expectations but you've only been dealing with this for a very short while, that's a pretty tremendous accomplishment to have already completed! I really hate that part, not knowing what my day will be like when I wake up....and even then it can change throughout the day. Normally I listen to podcasts or music during the day while I work which for the most part covers up the tinnitus, but the last 2 days no matter how loud I crank it up it's still there.....or going outside is usually much easier too but not these last few days.....sigh

 

[Mettafort]

@reinergirl Maybe its because I am so new to this that my outlook hasnt been worn down enough yet Though admittedly, personally speaking, from my own psychology, for me I know I have a choice. Once the cat was out of the bag, as it were, when once upon a time I was able to change my mood by deciding to do a few simple exercises, I realized I had nowhere to hide and be melancholic...everywhere I looked, there I am !

Glad you dont have apnea; thats good news.

Have you heard of Emotional Freedom Therapy (EFT/Tapping)? I have used this successfully to release any OCD thought pattern I might have when its 2am and I begin to fear the suns coming up anytime soon!

I work from home a few times a week, and I am aware of those lonely moments of going inside oneself.

Any time for me that lasts a couple of hours, of melancholy, is enough for me to do something about it. I developed this because I know if I dont do it sooner rather than later, I can definitely spiral out of control. So by design I allow myself a little self-nurturing, connecting with myself with my down thoughts, but I try to keep it timeboxed

See the beauty is, needing that certainty around what day it will be for you, is ironically the stressor and the relief - because it is the NEEDING CERTAINTY that then sets the mind up to have all sorts of worries and concerns. If you could practice letting that desire for certainty go, you have immediate relief.

Vipassana meditation btw, where your object of meditation is not your breath, but the tinnitus, I have found to work well after a small number of sessions, for as little as 5 minutes per session. Thats the acceptance piece. Being thankful for the tinnitus (I know that sounds crazy), helps with the experience I find.

 

[reinergirl]

You are exactly right, there is no choice but to get better even though at times it seems impossible. That's when I like to come on here and read success stories. Yes, "I" am always there too....can't hide! I've heard of EFT but don't know much about it so I'll check it out. I'm just concerned about why my ear suddenly feels so strange, even with the music turned all the way up my ear doesn't feel right and I can still hear it.....this is much worse than I can ever recall. I don't have much faith that the ENT appt is going to be much more than a referral to an MRI. I waited 3 weeks to get in with this Dr because he was the best rated one I could find in my area and his response to me in his office(as I'm crying and clearly really upset) is "why does it bother you?".....seriously, I wanted to punch him in the throat. But I didn't, and just stared at him like he had 10 heads.