New Sufferer and I Am a Physician!

I woke up on September 24th with bilateral tinnitus. It is a high-pitched hissing tone and is worsened by stretching my jaw or lying down. I went to an audiologist and had my hearing tested - I am in my early 60's so some higher end hearing loss was discovered and my tinnitus is where the loss is. I got high-end hearing aids and at least I can pump in various sounds to alleviate the tinnitus - I use "White Noise" on my Anroid phone - this is a great app and has helped to preserve my sanity.
I guess I will go through the gamut of medical invetsigations and seeing various specialists but will end up, like so many others, hoping that Tinnitus Retraining will eventually help. It seems quite difficult at times.
I realize I am only at the beginning of my long journey, a journey many of you have been on for years.

 

Hi and welcome to the forum.

I'm fairly new as well (3 months). You will find some amazing people on here and some great advice. The first month was the hardest for me, because of the spikes and the unknown, but when you get used to the pattern, it becomes easier. The fear of T reduces and you know tomorrow will get better. As you know there isn't a one stop shop cure for T, but there are successful treatments that help a lot. Also the mind does adapt and the noise fades into the background at times, especially when you're busy or concentrating. I find being outside helps a lot and a sleep generator and pillow helps me get off to sleep really easy.

Take care,

Darren

 

Dr. Ancill,

Sorry to hear about you waking up out of the blue with tinnitus. Was there any event or illness you could possibly attribute it to? Sometimes it is idiopathic, and we will never know. I've had it for 10 years now, and I'm only 27. You will get used to it, and if you have a hearing deficit (as described by your audiologist) using a hearing aid may well benefit you.

With masking, you don't want to set it so loud to where it drowns out your tinnitus. Masking should just be a competing sound, so that your brain can concentrate on something else along with the tinnitus. That way, it learns to filter it out. Our brain has an amazing ability for plasticity.

It's also nice to have a physician on board. Perhaps you could weigh in on some of the more medical related topics at times, as they often come up. An expert opinion is always welcome.

Hang in there buddy, for the vast majority of people, it becomes a total non issue if it does not go away.

 

Welcome! I'm fairly new also. It was a scary few weeks for me in the beginning. There is a lot of advice and support here. Because of that, I am already experiencing lower stress and sometimes even lower T. I have great hope for myself now, and I have great hope for my fellow T sufferers. There is so much info here about T and support for coping. There are alot of shared experiences and tips to try and I hope you find something that works for you here.

 

Thanks all.....it is nice to know there are others. Not only am I a physician, but I am a psychiatrist with a special interest in concussions and traumatic brain injuries. For the past 16 years, I have sympathized with my patients who have developed traumatic tinnitus and it seem reassuring to them to now learn I have it too....talk about empathy!! I understand about neural pathways and how the tinnitus is created by the auditory cortex then modulated by the limbic system which is constantly alerted to this 'new' sound. However, knowing is not the same as dealing with it. I find that a mild tranquilizer, such as Ativan, helps to calm the brain down when things become tough - usually in the evening.

 

My main task right now is to ween myself off of .5 mg of clonazepam that I have been taking once a day at night since my tinnitus last flared up. The tricky part will be doing it in such a way that does not exacerbate it!

 

Dr. Ancill -

Hang in there. We forget that even doctors are human beings. Seems like you are doing all the right things, especially getting the hearing aids, and the TRT.

We are both about the same age, so it's likely your T is due to hearing loss. When I first got tinnitus, I went to my psychiatrist. I was very surprised that she had no experience dealing with patients who have tinnitus.

You seem to have a lot of expertise in this area. Perhaps you will be able to have some unique insights into this condition, which may help others with tinnitus.

 

I don't know if anyone has 'real' insights. Most psychiatrists and psychologists simply use a 'system' designed to get the patient to talk and emote, thinking falsely that that is therapeutic. Regarding how to deal with tinnitus, I guess the first thing is perspective - it is only noise. It is not fatal. It is not paralysis. It is just one of those curve balls that life throws at everyone and there are things that can be done to make it less intrusive, but the main weapon is one's own brain. After all, it caused the damn problem - it can bloody well fix it!! Attitude is everything. I know I do not (at least yet) have tinnitus as bad as others but as with all the difficult things we have to deal with in life, it starts by putting one foot in front of the other and doing that again and again.....

 

Many also believe that we're imagining it. Well, ok, the whole of life is probably imagination but to be told to 'stop listening to it & you'll be ok' is less than useless. It's as though they think that we've deliberately not 'turned off the switch'. Perhaps it isn't the impression they intend - but that's how it can easily be perceived.

 

It is very clear that the Limbic System in the brain drives the 'importance' and the emotions attached to the tinnitus. Theoretically, psychotropic medications should be able to modify that response and, as a psychiatrist, I am susprised that no pharmaceutical compnay has thought about testing their antidepressant (which modifies limbic response) in patients with tinnitus, given the size of the market. I know people are leary about taking medications as medications are often thought to be the cause of tinnitus. However, the majority of the 500+ drugs that are often listed as 'causes' of tinnitus have very low incidences (1% or less) when I look at the actual FDA figures. Modifying how the brain reacts to stimuli either too much or too little, is the function of modern psychiatric medications. I would be interested to learn of anyone's reaction and experience to having been prescribed such agents. If we can learn to live with taxes and Justin Bieber, we can surely learn to cope with tinnitus!!

 

Welcome to a wonderful, supportive and educational group!!! They have helped me so much.
I have a question for you please. What about the theory of not reading about tinnitus, talking about it etc.
Theory being that we "feed" it, with our thoughts. In fact there is a thread somewhere on this board talking about it.
I can come to these friends on a bad day and get some empathy, good days are celebrated and keep current with research and coping skills. Would hate to think it is a bad thing to do. My doctors say avoid the internet.

 

Interesting point. One of the main parts of Tinnitus Retraining is education (the others being Cognitive Behavior Therapy to control anxiety and stress and the 3rd being the use of Sound Habituation). I guess it matters what you read on the Internet. Being a doctor in clinical practice, I don't care if my patients use the Internet and I will always try and answer their questions. The trick is to sort out the useful and accurate from the nonsense and rubbish, especially the 'miracle' cures. I don't think you ignore the tinnitus as that is impossible for most sufferers. The objective is to take away its power and your sense of loss of control. You need to get to that point when you can say "It's only tinnitus", have a neutral emoitonal reaction to it and put it back its box.

 

Welcome to the group. Like everyone here, I feel for you. You're patience's are very lucky to have you. Here is a link you may find interesting, it was posted by Mick in the Research News Forum:

Neuroscience may offer hope to millions robbed of silence by tinnitus | PBS NewsHour | Nov. 6, 2013 | PBS

ps; we are open 24/7

 

"Welcome"! of all to be included in our group it's always interesting with someone whose field has touched the issue
And yeah it could show out to be a benefit when it comes to your practice, lucky you
JB is no problem (sure sounds like a harsh disease when put in only initial letters), and even Danish taxes can be overcome, so there is hope!

 

Thank you, I have said many times some days it is about the volume and that I don't have the ability to stop it.
If a club is too loud for comfort, walk out. Construction, walk away. with this I feel so trapped.

 

Hi Dr. Ancill,
You have raised the same issue that I have been thinking about. I‘ve been wondering if I should stay on Fluoxetine for the rest of my life in order to ‘negate’ or compensate for my brains limbic response, (stress response?) to my tinnitus.
I had sudden onset very loud tinnitus, (74 dB) after pneumococcal meningitis 3 and a half years ago, then a shift in loudness (76dB) after a second bought of pneumococcal meningitis just over 6 month ago. After each episode of meningitis I took Fluoxetine 10 mg for 7 months each time. I completely habituated to the tinnitus within 3 months after the first meningitis, through self education, mostly using the TRT manuals. I can 'CBT it' and feel no stress from having tinnitus, but I do wonder, no matter what I ‘tlogically hink’ if there is a slight chemical imbalance in my brain due to the limbic response to the tinnitus. This is why I am considering staying on Fluoxetine for the long term is a good solution. I’m interested in your opinion as a psychiatrist.
In answer to your question, I can give these anecdotal answers. I feel that both times Fluoxetine helped me adjust to having new onset and a change in tinnitus. Many would say that habituating in just 3 months, on my own, is quite quick. I have just come off Fluoxetine, for the second time, (it has been 6 weeks since my last pill). I had been considering staying on F forever, (to compensate for the brain response to my tinnitus), but decided to come off it for a full 4 months before making a decision. I was expecting to feel bothered about my tinnitus, but too my surprise, although initially my tinnitus did become quite stressful, I would say that overall I am responding much better to my tinnitus than I expected. I’m giving it till the end of January, and will keep you updated. There are so many variables, I think it will be very difficult to know whether I am really responding better to my tinnitus on F compared to off.
I still wonder; surely this tinnitus is causing a stress response in my brain, and this slight chemical imbalance could shorten my life. Taking Fluoxetine seems like an easy solution.
( I should add that I also use sound therapy, relaxation and meditation, so F plus these other therapies for the ideal long term solution).

 

I am a great believer in "if it isn't broken, don't fix it!!". There would be no harm in staying on fluoxetine lifelong although as you age (60+), the dose may need to be reduced. Stress does not, of itself, shorten lifespan. Stress is the trigger for making us get up off our ass and do things. There is a lot of nonsense talked about 'stress' and often stress and anxiety are used by doctors to 'explain' what they don't know. Remember - whatever works.....!!

 

aloha Dr. Ancill, i too went to bed one night and woke up with T ? it has been 4 months with this ringing but i can say it has gotten better thanks to many wonderful people here to help you better understand it. everyone here has great advice and stories that can lead you in the right direction.. hope all gets well with you,, mahalo.........

 

Dear Dr. Ancill

Very sorry to hear that you now have to suffer from Tinnitus. Your tinnitus seems very similar to mine (I suffer from probably noise damage in the higher frequencies which correspond to my tinnitus frequencies), although there is about a 20 year age difference between us. I very much hope that you will be able to take charge of this miserable condition and find a way forward with it

I'm certain you will be able to bring a lot of experience and knowledge to this forum and hopefully you may be able to pick up some useful information at the same time

FWIW I'm finding that wearing musicians headphones when in moderately noisy environments (and avoiding very noisy enviroments) helps me a lot as they still allow a little noise through to act as a masker but protect you from the worst of the external sound without leaving you 'alone with your hissing'. I know the ENT's say not to wear earplugs but well... when they have something to offer me instead of 'learn to live with it' then I'll take a bit more notice of their advice!

 

Thanks for your reply. Perhaps 'stress' wasn't the best word for the effect in the brain that I was trying to describe.

I'd be interested to hear about anything you think or find out about antidepressants and tinnitus, especially antidepressants to help with the limbic response to tinnitus.

I hope the effect of your tinintus eases soon.

 

Welcome, Dr. Ancill: Like you, my tinnitus came on suddenly. I had barotrauma on a trans-Atlantic flight coming home from a spring vacation this year. So one day I was in France, the next day I was walking off a plane in Ohio with my ears ringing -- and they haven't stopped since. It's a shock and very stress inducing, I think, when you have a sudden onset. I quickly developed an anxiety reaction and had rolling panic attacks -- even though I never previously had suffered from an anxiety disorder.

Two neuro-psychologists think my reaction, in part, may be due to prior brain injury and brain death I had following a cerebral hemorrhage and stroke 13 years ago. So I added a psychiatrist and CBT therapist (my first experience with either) to my tinnitus team immediately after my initial consult with my very unhelpful (and now former) ENT. I think the psychological/psychiatric component of tinnitus is often overlooked -- in fact, the general public views it as a ear disorder, rather than a neurological disorder.

Anyway, welcome. And I am curious: Given you probably already know much about what we non-healthcare professionals are trying to figure out, what drew to you Tinnitus Talk?

 

Hi Dr. Ancill.. You are right in pursuing the syptomatic threapies as you know tinnitus is a symptom. What the physicians generally do not know is swere stress (other than noise, infection, blow, ototoxic drugs or auto-immune disorder) can lead to inner ear damage directly or indirectly for some people, .
If you look for some reliable information about what lies under this annoying symptom, i can recommend you this website : Tinnitus , A Cure for Tinnitus

 

Thanks everybody for your advice. I am learning to cope as many of you have. I understand that negative attitudes lead to anxiety which worsens the experience of the tinnitus so I try to keep positive and use masking sounds - the best program I found so far is Sleep & Noise Sounds for my Android phone. White Noise Lite (the pay version) is also good as you can download new sounds and mix your own 'mixes'. These have made a huge difference during the day. At night I make sure I get 6+ hours sleep with lorazepam (Ativan) 1mg + diphenhydramine (Benedryl) 25mg + melatonin 5mg. Things are usually quieter when I waken but do get louder as the day wears on. I have had this tinnotus for 2 months now and I do find that I am learning 'to live with it'. My wife had made me try the Lipo-Flavinoids for 3 months and I agreed - as they probably can't do much harm, although there is no good evidence that they will help either.

 

A question to Sunflowergirl:

How do you know that your tinnitus is 76 decibels and what does it sound like to you?

 

Apologies for the slow reply!

My tinnitus is unilateral, constant and unchanging. Occasional when I have pressure in my ear there is a shift in the sound. Much of the day I don’t hear it, especially when I am busy, (I’m sure most of us can relate to this!) If I am ‘hearing’ my tinnitus I hear it over nearly everything, TV, bus, Hoover, about the only thing that will mask my tinnitus is my hairdryer close to my head. This seems to agree with my measured loudness, buses/Hoovers/TV’s but not hair dryers near ears, come in less than 76 dB.

Tinnitus loudness and frequency matching is easily done by an audiologist, but seems to be a big ‘no-no’ with the NHS and NHS audiologists will not loudness match even if you ask for it.
A private audiologist can tinnitus loudness match in about 5 minutes after the usual hearing test. To do the loudness match first frequency match is undertaken; simply different frequencies in each ear until I match the frequency given to the frequency of my tinnitus. Then for loudness match; first the sound is given in my tinnitus ear, (I have unilateral tinnitus and hearing loss) and adjusted till the sound is exactly the same loudness as the tinnitus I hear. Then the sound is given in my non-tinnitus ear and adjusted till the sound is the same as the loudness as my tinnitus. For the two times that I had tinnitus loudness measured I matched the loudness within 2 dB of each ear. This seems very accurate!
The bit that intrigues me, and I’d be interested in a view from a audiologist on this, is this: I was told, that yes 74 dB is very loud, but as my hearing deficit is 60 dB at this frequency in my tinnitus ear, then my tinnitus loudness in only 74-60 = 14 db. I wondered; if this is the case then why didn’t I match my tinnitus as 14 dB in my ‘good’ ear? Also, on the second time my tinnitus loudness was measured, my hearing deficit in my tinnitus ear had improved (at my tinnitus frequency), and yet my loudness was measured at 76 dB? There didn’t seem to be a correlation to my hearing loss at my tinnitus frequency and my tinnitus loudness.

Tinnitus loudness seems to be a very unpopular topic with tinnitus researchers and the NHS. Research presented in the Tinnitus Retraining Therapies manuals written by Jastreboff etc suggests that tinnitus loudness has no effect on outcome from TRT. As a sceptic I question this, especially for tinnitus measured at very loud readings. As TRT is to a degree based on a CBT model, I guess it is unhelpful to suggest to tinnitus suffers that; ‘your tinnitus IS very loud’.... I can see that presenting research that suggests that tinnitus loudness is correlated with TRT outcome would be unsupportive to the TRT model, but coming from a science background, I know that I am going down a line where I don't want to make any more comments!

For me it has been very helpful to know that my tinnitus is considered very loud. When I am using CBT to cope with my tinnitus it is helpful to know that I am dealing with something that is real and with impact, not some inconsequential background sound that the hearing therapists would like us to think it is.

I consider that I have completely habituated to my tinnitus and on the whole it doesn’t bother me, but despite this, I would give a very, very large sum of money not to have it!

 

Thank you so much for haring your insight, Sunflowergirl.

 

Hi. I'm sorry that you too have Tinnitus. It can happen to anyone. And just because you are a psychiatrist does not make your emotional reaction to it any more real. I have been trying unsuccessfully to habituate for 4 months now. Have you tried Neuromonics? I believe it is neural acoustic stimulation to re-train your neurons that are misfiring. I'm not entirely sure about it, but I am sure you've at least heard of it. Good luck and keep posting, we need a psychiatrist on here!

 

Hello everyone. I joined a few days ago. I had just returned from a vacation and the last plane trip created a lot of pressure in my head. Of course my T. was so loud. Being tired also played a factor. I started a thread titled Unable To Sleep two days ago. That is my main issue these days. I received such encouraging responses with good advice. Thank you to all. This support plays a very big role in trying to cope with our respective T. Issues. Have a good day to all. Keep busy. Stay in shape. Have faith!

 

Neuromonics may be helpful for some sufferers but TRT is equally effective if not more so. Neuromonics is really a variant of TRT anyway. Don't give up on TRT - it can take 12 months or more to work.

 

My tinnitus began shortly after a serious concussion. Another member told me that concussion induced tinnitus is more complicated. Can you shed any light on that matter if you have any information in that area as it relates to tinnitus.