I've Lost My Faith in Doctors Now

So I've had T for about a year. It started the same time I started taking Wellbutrin for depression; foolishly, I kept taking it for 4 months, during which the T kept getting worse. In January I quit, but nine months later, the T is still blazing away.

My primary care provider was just confused, and referred me to an ENT, who told me where was nothing he could do. He referred me to an audiologist at the Michigan Ear Institute. My last appointment with the audiologist was in April, where he was surprised to learn that my T was still going after quitting the Wellbutrin. He ordered me to get an MRI before my next appt, but I'd already shelled out $500 for a pointless CT scan, and didn't see any reason to drop thousands on something that likely would find nothing. I haven't seen him since.

Overall I've been inching my way towards habituating, or so I thought. On good days I can go a couple hours without thinking about it, as long as I have distracting background noise. But I've been in a pretty bad spike for the last few weeks. It's scaring me; I can hear it over my noise generators right now, and I have to use a direct in-ear headset to block it out. I'm afraid it's getting worse permanently, or that maybe I should've had that MRI (maybe I have an acoustic neuroma, even though I hear it in both ears?).

Part of me thinks I should try to see the audiologist again, as he was the only person who gave me any sort of explanation for my condition (he said he'd seen Wellbutrin cause T before, but it was always temporary). But honestly, every doctor I've talked to seems less competent than the people on this forum.

Everyone always says to ask your doctor, but every doctor I've had is just confused by me. They've "never seen this happen before," and they don't offer any advice beyond "mask it." (No sh*t, Sherlock, I've been doing that for a YEAR. Also, not really possible when I work in a library.) I want to talk to a medical professional who actually understands this condition, maybe a counselor who could teach me TRT or something. But I don't know where to find anyone who knows about that stuff.

How do I find a doctor, or counselor, anyone who actually understands tinnitus and can help me through the habituation process? Or are they all just completely ignorant?

 

Is your T a hiss, tone, combo or something else? External sounds tend to make my hiss in my right ear worse but I don't hear the steady tones unless I really listen for them or I'm in a quiet room. But sometimes the steady tones are more noticeable after being outside for a while etc. T is hard to predict.

As far as finding a doctor that understands I would not hold my breath. If you seek emotional support you may want to just look into a regular therapist?

 

I have a mostly-consistent hissing tone that I hear constantly (sounds like an electrical hum from an old tube TV, but louder), and that's what bothers me the most. It's in both ears, but usually louder in the right. I also get pulsatile T when it's really quiet, or I'm nervous.

 

Oh yeah I remember thinking all of the electrical things I worked around were so loud. Little did I know that hiss sound was in my head.

 

Lol. I like to think of it as "listening to radio waves" sometimes.

I did, for a while. She was very helpful with some of the other issues in my life, like anxiety and marital problems, but eventually told me that when it came to T, "I just don't know how to help you." Not sure how to find anyone else who might understand.

 

Hi Liberty Girl,

I have a similar sound as you. In both ears but right is louder. Right now I can mask pretty well with normal ambient noise. I avoid quiet rooms like the plague. And I am terrified of a spike. I have not had one but I am only 3 weeks in. Hoping I will continue to improve as many suggest I will. I too am surprised your T did not resolve after stopping the Wellbutrin. I would go back to the audiologist. They seem to know the most about T and have some decent strategies to cope! Although I have seem some good ENTs but they do not do any therapies.

 

You know what? This site can also provide some emotional support. I don't think it's good to read negative posts but sometimes it's good just to know that others are also dealing with this type of stuff and you are not alone

 

You might try the Henry Ford Tinnitus Program https://www.henryford.com/body.cfm?id=53644
The description looks pretty good.

 

The spikes truly suck, but it's easier to manage to you understand what caused them. For me, I'm pretty sure it was a combination of poor diet and disruption in schedule. And 3 weeks in could very well be temporary, but definitely talk to your doc about it thoroughly, if you haven't yet. It's a crucial point for many people.

This forum has been immensely helpful. Without it I don't think I would've ever started habituating at all. The people here have given much better guidance than any doctor has, to me anyway.

Thank you very much for the link! It certainly looks more promising than the institute I went to.

 

Hey, seeing as you work in a library I assume you enjoy reading books. Do you still enjoy reading or do you find the quiet atmosphere is too annoying with the T? I used to love to read and now find myself avoiding it because I'm afraid I'll just lay there and focus on my T the whole time. If I could go back in time I would tell my teenage self to wear ear pro while mowing lawns and turn the music down! No sense looking back though, what's done is done.

 

I found a brochure from the Michigan Ear Institute when I googled to find Henry Ford. It seems like it was written in the 50s - talks about "head noise". As part of the general treatment guidelines, they say:

"4
Try to accept the existence of the head noise
as an annoying reality and them promptly and
completely ignore it as much as possible.
5
Tinnitus will not cause you to go deaf, will not
result in your losing your mind or cause death,
so immediately forget such distracting and ter
-rifying thoughts."

Now, acceptance and not panicking are are both good things and would be part of TRT or CBT. But they way they phrase it to "completely ignore it" or "immediately forget it" seems to show a lack of understanding of the lived experience. (shakes head)

If you go to Henry Ford, be sure to report back.

 

LOL, that's funny, but it's actually really good advice. People these days tend to need more hand holding but, as it stands, the bottom line is you need to accept it, ignore it, and then I would add: protect your hearing! Seriously, though, I think it's good advice. Sometimes, old school advice is best.

For anyone interested, here it is: http://www.michiganear.com/webdocuments/brochure-tinnitus.pdf

 

I agree that the underlying advice is good - as I said, both items would be part of a cognitive behavioral approach. It just rang too close to the "just ignore it" advice from doctors.

 

I never had much faith in doctors to begin with. I think when they graduate from med school they have a sincere desire to help people....but then they find that the real world is so different than what they hoped to practice in. Many patients expect to receive some kind of magic pills that will cure all their problems. Pharmaceutical companies push their products...often toxic products that have dangerous side effects. Technological advances bring new diagnostic equipment and tests, which make big bucks for the medical industry. Insurance companies - one of the biggest money-makers - exercise much power in the industry, often by what they will or will not cover.
Doctors and patients become slaves to - and victims of - this money-making industry.

 

You can try reaching out to Dr. Hubbard who sometimes responds to questions on here. I think he offers phone and Skype CBT sessions.

https://www.tinnitustalk.com/threads/does-everyone-eventually-habituate.10855/#post-134000

 

Losing faith in doctors just means you woke up and got smart.

 

I think doctors need the support in place to refur patients with tinnitus to a counsellor while they wait for ENT and also guide them in direction of Tinnitus Talk and The BTA and any tinnitus groups not to far away .
The first few months is when emotions are overwhelming and tinnitus a big shock to people as it invades their life so the support for doctors would be great......lots of love glynis

 

Hi Library Girl,
Thanks for your comment.
I have seen an ENT and an audiologist as well to get my hearing tested, as consulted a family friend who is also a retired ENT. And yes, all said they think this is likely temporary for me but after three weeks you really start to wonder. It has not gotten worse but really cannot say that it has improved at all but I am trying not to listen for it because it just makes me terribly anxious. I am seeing an another audiologist this week who specializes in T. Is there anyone near you who does that? Again, from reading this forum, I have found folks have had the best experiences with audiologists. I think ENTs just do not know how to address something they can't treat/cure. I live in Boston and Mass Eye and Ear is finally doing all this research on T because there are so many people with tinnitus after the marathon bombings.

 

What can doctors do anyway. All they can do is refer you to ENT write out a prescription for your depression which comes with tinnitus and tell you to live with it. Of course that's not what you want to here but what else can they do. There's no wonder pill out there at this time. In reality we have to deal with this problem ourselves.

 

Spikes are just horrible when they go on for a few weeks. I'm also in one that I've had for three weeks so far. I hate the way you get to the point where you start wondering if it is going to stay this way permanently. So far, for me, they have all gone back down. But I seem to get them a lot and long ones too, like yours.

I've pretty much given up on doctors for tinnitus, and they don't even cost me anything because we have the NHS in the UK. My strategy is just to make sure my GP knows what a big deal tinnitus is in my life so that if/when a treatment such as Autifony's drug makes it then I'm in a strong position to get a prescription.

My conclusion is that with most chronic health conditions you are better off doing your own research and going to your doctor with a clear idea of what you want them to do. I think you have to actively manage your relationship with them, rather than allowing them or the system to position you as a supplicant. From what you say about opting not to have the MRI I'm guessing you might be coming to that conclusion too.

By definition, chronic health problems are ones they cannot solve for you. And I suspect that many doctors are not good at facing that fact while also finding ways to help you mitigate the emotional burden and develop coping strategies. Not knowing the answer is uncomfortable for them (it unsettles their feelings about their own status) so they can sometimes either be dismissive or start recommending things that don't really help (possibly like the MRI). That is just my opinion though. I'd say Tinnitus Talk is a much better source of information and ideas for how to deal with this problem until an effective treatment is developed. Like with all sources of information you have to be prepared to filter it, but there is a lot of knowledge and experience here.

Good luck with that spike. I hope it ends soon.

 

You've already done the right thing, you've found the only people who can understand what you're going through and you have asked for support.

As someone who already habituated as a kid I now have to go through it again with a much more disturbing sound which sounds similar to yours. I would recommend everyone here finds other people who share common symptoms and onset and compare notes.

It sounds like you're left alone with the T for much of the day in the library which is not good for you as you need to take your attention away from the sound. If you went for TRT doctors would probably recommend a in ear noise generator/hearing aid with counselling if you needed it. There are different approaches to sound therapy which I wrote a bit about here and wrote a summary here.

You can use an app like Hear Tinnitus which can play masking/suppressing sounds over top of the sound around you. It simply plays the sound through the microphone on your headphones or phone and then overlays it with whitenoise or a range of different sounds.

Most of the literature I have read recommends suppression rather than masking. That means playing a sound slightly softer than your T and at adjacent frequencies. And that treatment should be for several hours a day.

In the end nobody can tell you to 'get over it' or 'you will just habituate' because it's you who has to be inside your body. I think the hardest thing for me was coming to terms with the assumption I made before that I would always have my health. I never expected this to happen and so when it did I started to become nostalgic for a future that now looks like it is fading away; one where I could be at peace in silence whenever I wanted.

Moving on from a trauma like this is deeply personal and you have to do it in your own time with support from those who understand the emotional challenges as well as the medical ones. You have that here.

I can post more about the TRT if you want. Happy to answer questions from anyone anytime I am online. You are not alone.

 

Yes, T is very personal and some can accept and ignore it, quicker than others. Reaction to it is the key. Lose the negative reaction and T will most likely fade into the background. Of course there are all kinds of T and lucky people, can only hear it when in a quiet situation and others can hear it over a jet engine blasting ten feet away. I met a guy who lost all hearing in one ear from an accident and has screaming T as a result. He said, it took 3 years to accept and ignore the noise and works everyday in a fairly quiet job. So, the key for him was acceptance, reaction and time.
These three factors, are a common thread, in defusing T with many veterans here on TT.

I'm in 17 months now and still struggle, because my mind has not yet accepted the noise. I'm still angry at myself and think of my past, quiet way of life, much to often. Finding a way to move on and accept this nasty noise, hasn't materialized in my mind yet. So, until it does, I will unfortunately suffer and drift further away from habituation.

 

I can only enjoy anything when I have enough background music to distract me. I usually play nature sound generators when I want to lounge and read.

I thought the same thing while reading that brochure. True, but not very compassionate. And I'm planning on requesting a consult at Henry Ford tonight or tomorrow. Will keep updated.

@Brian Reade, I can definitely see your point. I've been denied insurance coverage for promising treatments before, and had my treatment suffer. I know my doctors try, but often just don't know what to do.

That's a great idea; I wish I'd had that when I started. The first time a doctor told me "I can't help you" about this, I started having nearly-suicidal thoughts. I wish doctors would take the psychological implications of diagnosis into consideration more often.

 

@Forever hopeful, sounds like you're in a good position, as far as treatment goes. Good luck! (And don't try to "be tough and wait it out" like me. That was my biggest mistake, waiting several months to address it with the doc...)

My ENT didn't even do that. Just bounced me off to the audiologist. What I wish they would do is refer us to therapists with experience treating tinnitus patients. I spent months developing a phobia/panic reaction to noise which, I now realize, will probably take years to unlearn.

@dboy, I'm sorry to hear you're in a spike too. And I think that's a very sound analysis; this isn't my first time dealing with chronic illness (though this is definitely the worst) and I'm very familiar with that "I-don't-know-how-else-to-help-you" expression.

Thank you so much. I sincerely appreciate everything you wrote. What you describe above is exactly what's been repeating in my head; the sudden loss of potential health feels just like grief.

This is exactly what I'm experiencing too. I have yet to accept it because I'm so angry at the situation, at having been recommended a supposedly "safe" drug to treat my depression, which, in the end, caused a permanent, constant condition that made the depression exponentially worse... That's why I need TRT and specific counseling, I think.

 

@Library Girl I feel for you, truly! I remember your initial posts were around the same time my initial onset happened and from my recollection it does seem like you are much more on the "road" to habituation now than you were then (as am I) so I'm really happy for you.

That said I think you're getting a lot of good advice above. My only thought is try to find other doctors, both ENT and otherwise, that are well-versed or at least competent with tinnitus. I had an ENT who basically was not at all helpful with it but his nurse practitioner had an interest in tinnitus (her husband has it) and she was around my age which really helped "normalize" it for me. I also worked with a counselor who wasn't necessarily a TRT-type expert but was also a registered nurse and she had some really helpful advice about how to deal with chronic health conditions.

It might be worthwhile to get the CT just to rule out an acoustic neuroma if you haven't done that already. Very likely it's not that but it doesn't hurt to check, and you'll be able to rule out any other inner ear things that could be bigger problems than the tinnitus.

As far as dealing with the "guilt" side of it--yes I think the same things, like "if only I'd worn earplugs when I played drums" or "if only I'd used hearing protection when I mowed lawns as a teen instead of listening to loud headphones" or "if only I'd washed my hands more thoroughly and avoided the sinus infection that led to the onset of my tinnitus" but somehow the "edge" to those thoughts is gone. In fact typing them out right here doesn't give me any feeling at all. It's hard to get there but I think you'll get there and you're on your way. Now I'm sitting here with my T blaring (because the background din of TV noise is gone) and it still gives me no emotional reaction. I'm preparing for some day the possibility of a "worsening" but I see how a lot of people eventually habituate to that too.

Depending on where you are geographically there might be good TRT-related counselors as well. I had an initial consultation with a TRT counselor which I ended up deciding to "hold off" on because of the cost and because I wasn't sure it was "for me" but it might be worth it for you.

Best wishes and hope your spike quiets down a bit!

 

Me too.

 

@Library Girl we have similar sounding T, if you want try this sound enrichment I found on youtube on low volume: https://www.tinnitustalk.com/threads/shhh-nobody-move.11139/#post-136675

Hopefully it will help you too, you can add it to your playlist. For me it made the T go down even after it finished.