Tinnitus Week 2018 / Day 7: What Advice Would You Give to Someone Else Who Has Tinnitus?

What kind of advice would you give to someone else who has tinnitus, or is new to tinnitus?

Thank you for your involvement in our daily questions throughout the Tinnitus Week. This is the last question of the week.



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I always say that tinnitus is the one medical condition that no one cares about – until they acquire it themselves, that is! It is also part of the list of "invisible diseases" and combined with the lack of treatment options, it can be a heavy burden to be a tinnitus sufferer (if one has it in the more severe form). I am not sure what advice I would give – I always try to give "preventive advice" so that friends, acquaintances, colleagues, family, etc. do not have to ever develop ringing in the ears in the first place. But such advice is often dismissed since no one can imagine the nightmare tinnitus can turn into.

If there is advice I would give, it would be to self-educate yourself via good sources of information. Regular ENT websites offer kind of basic not-too-informative background knowledge on tinnitus (some of it is even incorrect). Similarly, tinnitus boards can be "pretty messy" in terms of the accuracy of the information – not to mention intentionally biased (in some cases). There are clinical trials underway and perhaps we will start to see progress in that domain. I would also recommend earplugs for daily commuting. And lastly, I would probably recommend keeping tinnitus to yourself – it is unlikely that others will understand what you are going through. And trying to get others on the same page as yourself (and failing) can lead to even more frustration. I do think that it is possible to perhaps make some progress by examing barriers (inhibitors) to habituation. Make a list of those things that contribute to you not coping and come up with a list of things that can help you manage better (e.g. sound enrichment for sleeping, water-wall in the office, and so forth). Over time, tinnitus will become less of an issue (for some people, not everyone).

P.S. If you are new to tinnitus, don't forget to include "patient history" in your self-assessment (if you are unsure what caused your ears to start ringing...).

 

Stay calm and keep relaxing music on and give them 100% support and get the doctor check their ears and reasure them their is help and support on TT-TH facebook group and BTA.

 

Stay calm seek support and don't let the damn thing beat you

 

Hello Ateos,
Is it possible to give more info on this. I mean your opinion. Does this mean earplugs everywhere except home?

 

Find a way to conquer the anxiety and depression and do not alter your lifestyle.

 

Well... if today is the day of anecdotes, then I will pick a story from the time I visited Dr. Wilden (which I did about 12-13 times back in 2013). Those who have been his patients while he was still based in Regensburg will know that there would be a large bowl full of earplugs right next to the exit in the lobby of the mansion he was housed in. It was free to take a handful on your way out (and indeed you would almost be forced to take some with you). Protecting your ears was an essential component of his therapy. While I do not know with 100% guarantee why I am +90% improved since 2013, the important thing for me is that I am.

So, that's the story. And to this day, I continue to protect my ears whenever I leave the house.

 

Hi, I would advise you not to despair. Increase serotonin and try to live as full as possible, because we have it.
Use sound enrichment.
Unfortunately, for today there is no concrete concrete treatment.
Try to calm the nervous system and improve your mood - this is very important.
And keep hoping for help in the foreseeable future. Bring the public's attention to this issue.
Because it really is against the background of the attention of science.

 

Thank you Ateos. Do you have any earplug recommendation?

 

I use 3M 33 dB NRR (the orange ones). And I make sure that they are inserted firmly and that they have a chance to expand while plugged in. I do believe that those who wear earplugs to concerts, and still end up with tinnitus, may not have inserted the earplugs while holding them in for about 20-30 seconds. This is actually quite important to get the full benefit. For everyday commuting, it is of course less of an issue.

Having earplugs in has "saved" me twice: in both cases was I caught off guard by someone detonating a firecracker near me – I mean, like military grade ones some 10 m away... But it was all good because I remembered my earplugs (and actually put them in too – important "minor" detail... ).

 

Your information is always very helpful. Lately I experience further worsening and I suppose I might have to protect more. However I use ear-muffs almost everywhere. I'll check on those earplugs. The hard part is that tinnitus with plugs is 10 times louder.

 

To stay calm and keep living exactly how you've been. (Unless you T was induced by sound then clearly alter some things there.) Also, create a great support system around you if you can. A doctor may be able to help so go get checked examined and heart tests, so on. However, take what the doctor(s) have to say with a grain of salt. Don't take there advice for the cure. In my case my doctors advice made my T so much worse.

 

First of all, I would recognise their suffering, and validate their distress.
“T” is an awful condition to have to cope with.
Having myself been near suicidal at the onset of severe chronic T, I would suggest that their condition will almost certainly improve.
They will not live for ever in a pit of despair.
We clearly do not ‘like’ our noise, but having learnt how better to tolerate it, cope with it, and live with it, the depths of distress are then behind us.
I would continue accessing this website, and definitely gravitate towards those people with a more positive outlook.
Having determined who they are, follow them, and read anything that you think will encourage you.
I am most definitely not hero material;
quite the reverse, but perhaps heroism is ‘catching.’
There is a sense in which we are all heroes, and we should take a pride in ourselves.

On a practical level, I would:

* always have earplugs ready (in my top pocket) for use if necessary,

* experiment with Melatonin for deeper, longer, sleep, (just 2mg does it for me - I even use a pill cutter, and take just 1mg most nights,)

* learn how to use meditation (deep relaxation) techniques. (I can essentially ‘put myself out’ in a few seconds).
A trancelike state is quite achievable, despite “T.”

* If you have a sympathetic, loving partner, or friend, confide in them when the going gets tough.
(“Arms all round” is a truly wonderful balm.)

Well that’s all I’ve got just now.
Best wishes everybody.
Jazzer x

 

1. Join Tinnitus Talk and be an active participant. The support on this forum is amazing and can be a literal lifesaver.

2. If you can afford a doctor, find one who is knowledgeable about tinnitus and is willing to listen to your fears or concerns. Make sure there's no underlying physical cause for your tinnitus.

3. Make an effort to stay calm. Anxiety heightens perception of tinnitus intrusiveness and volume, and interferes with sleep. You need a good night's rest.

4. Find something to focus on that will distract you from listening to your tinnitus, whether it be engaging in a hobby, watching movies, reading a book that takes your mind to other places, volunteering in the community to help others, etc.

5. Use sound enrichment in your environment. Absolute quiet only heightens tinnitus perception. Use masking when the tinnitus is intrusive or when you need a break from its relentless presence.

6. Do your best not to obsess about your tinnitus:
a. Don't monitor it for signs of improvement;
b. Don't measure it to gauge its volume;
c. Avoid describing it to yourself or others, because that creates an emotional attachment in your limbic system, which plays a major role in tinnitus;
d. Don't compare it from one day to another, as that's another form of describing it.

7. Buy my book

 

I have noise induced T after a car accident (airbag blast) for almost 4 years now.
1. Go to your ENT to exclude any disease (such as neurinoma), and forget him/her, since useless ("Try to cope with") from that point.
2. If T is unbearable and you feel you're in hell go to a psychatrist you know he/she deals with patients suffering from T : you'll sleep, stay calm and avoid to fall into depression
3. Go to a neurologist, to exclude tumor, traces of concussion (even a tiny one, or a "healed by itself" one even months after a small head injury). Again, the neurologist should be T aware and help T sufferers. He/she will possibly prescribe anti-epileptic drug (Aaaaaaaaaarg Trobalt where are you now ???????? R.I.P.) and rTMS sessions if equipped with.
4. Never, never, never, never talk to people who don't have experienced T, they'll make you down. I would say talk to no one except to a T fellow.
5. I consider alternative medicine (it's my opinion, I'm a scientist, sorry, and my experience you have perfectly the right not to agree) as bullshit. If one snake oil would truly cure or relief T you would heard of it. I include (sorry approximative translation) : homeopathy, magnetism, cristals on your chest while hearing mantras from a shaman (lived for true, 50€, I was about to punch his face in the end and put his cristals in his *ss), chiropractor, sophrologist, hypnosis... In a word don't give your siblings and friends' advices a sh*t.
6. Try and fail by yourself, it's YOUR T, it's YOUR PATH.
7. Protect your ears
8. TIME is your best friend.
9. Never lose HOPE (go to point 8 and repeat).
10. Don't be ashamed of feeling to be at the point of no return. Try keeping your favorite hobbies. It took me 3 years to read a book again and a little more for crosswords (found 4 words in a day yeehaa). I had to quit my IT manager job (to much stress, lack of concentration, and the feeling to work for nothing). I'm on a sick leave and try to find another way...

 

Try not to worry about it.... Don't give it any emotional power. A lot of constants can be added in your life's equation, you just got to consider them and move along the best you can, you know?

 

This is a condensed version of https://www.tinnitustalk.com/thread...itus-recently-this-info-will-be-useful.25741/

1. Many people eventually get to hear silence again
https://www.tinnitustalk.com/threads/spontaneous-recovery-stats-over-70-recover-3-studies.21441/

2. After reading the posts on this forum over the past 10 months, I learned that in many cases T tends to fade: it gets quieter and its pitch gets lower (often changing to a hiss or even a soft hiss) so that it is easier to ignore. So in the worst case scenario if your T doesn't go away, what you are hearing now is likely not going to be the sound that you will get stuck with.

3. Many others, including me, found that staying away from even moderate noises (like that of a vacuum cleaner, blender, lawn mower, and hair dryer) promotes healing.

5. There are countless posts on this site where people describe how they found out the hard way that hearing protection like ear plugs or muffs can provide a false sense of security, and not be enough to protect you. Here is a sample: https://www.tinnitustalk.com/thread...-religious-purposes-in-nyc.24448/#post-294691

6. Most spikes are temporary spikes (few become permanent). Temporary spikes can last a surprisingly long time:
https://www.tinnitustalk.com/threads/head-movement-spikes-tinnitus.25179/#post-290614
https://www.tinnitustalk.com/threads/poll-how-long-do-your-tinnitus-spikes-usually-last.23110/
https://www.tinnitustalk.com/threads/poll-how-long-was-your-longest-spike.22099/

When you get a spike, it is natural to panic and assume the worst. My advice is to wait three months or so. If the spike is still there, as loud as ever, at that point you might start worrying about this spike being permanent.

7. If you get a new acoustic trauma, it might be a good idea to take prednisone. {You can find more details about prednisone at the link at the top of this post.}

8. You might hear that if your T doesn't go away in 6 months, it is permanent. That is a myth. "Six months" is just a time interval that insurance companies use to classify a condition as being chronic. It has no medical basis.

Multiple sources seem to use "2 years" as their rule of thumb. See, for example
https://www.ncrar.research.va.gov/Education/Documents/TinnitusDocuments/01_HenryPTM-HB_1-10.pdf
"A general guideline is that tinnitus of at least 12 months duration has a high likelihood of being a permanent condition (Dobie, 2004b). However, it also has been suggested that a person must have experienced tinnitus for at least two years before it should be considered permanent (Vernon, 1996)."

If your T keeps fading but is still audible 2 years after onset, there is no reason to think that it will stop fading after 2 years.
It will most likely continue fading. A number of members of this forum had stated that the first time they got tinnitus, they eventually got to hear silence after 12-18 months. This is evidence contradicting the statement above from that Dobbie 2004 study.

9. Many people on this forum got their T as a result of ultrasonic dental cleaning. There is no reason to take this risk. Insist that your dental hygenist cleans your teeth manually. I never heard of a hygenist declining such a request. Manual cleaning is as good as ultrasonic cleaning, and it doesn't cost more.

10. Beginning today, commit to taking better care of your teeth. You want to minimize the number of dental procedures you undergo.
It is probably not a good idea to wear ear plugs or even ear muffs during a dental procedure because of occlusion effect. You will want to ask your dentist to drill for at most 5 seconds followed by a 10 second break. If a laser can't be used, find a dentist who uses electric-powered drills (as opposed to the traditional air-powered drills) as they are supposed to be quieter. For more details, check out
https://www.tinnitustalk.com/threads/dentist-laser-vs-ordinary.2791/#post-272983

11. Many people get their T as a result of an ear infection. Do what you can to prevent an ear infection. For more information, check out https://www.tinnitustalk.com/thread...tus-disappear-for-a-second.23966/#post-295711

12. Many get T after doctors remove wax from their ears using microsuction or syringing. There is no reason to take that risk. Ask the doctor to remove the wax from your ears using manual tools. I think the name of one of the tools is curette. Another tool looks like a wire loop. Make sure to use special ear drops for two weeks prior to your appointment to soften the wax. Also make sure that the person cleaning your ears is a doctor who has a lot of experience (and not a nurse with little experience).

13. If sleep is a problem for you, there are several things you can try.
Amitriptyline (10 mg) is non-addictive and it didn't make me drowsy in the morning.

You can also try taking melatonin, but make sure not to take too much of it.
https://vanwinkles.com/the-dark-side-downsides-side-effects-of-melatonin
"In 2001, researchers at MIT concluded that the correct dosage for melatonin falls between .3 and 1 mg."

Make sure you use some sort of sound enrichment. It is very helpful. The idea is not to drown out T, it is to give you something else to listen to, besides your T.
Check out
http://mynoise.net/
Or buy a device like the ones below
https://www.amazon.com/Sound-Oasis-S-5000-Deluxe-Therapy/dp/B018KUVEOM/
https://www.amazon.com/Cherry-Koala-Concentration-Relaxation-Sufferers/dp/B01FRW2WBA/

14. Airplanes {To see this tip, click on the link at the top of this post.}

15. Look into taking supplements. There is a lot of information about supplements on this forum. Some supplements you might want to investigate (those are the ones I have been taking) are: NAC, Magnesium bis glycinate, Vinpocetine, ALCAR (N-Acetyl-L-Carnitine), Vitamin B complex, Ginkgo Gold, and Zinc. For more details on each supplement - use this forum's "search" function.

16. When you get a full ear sensation it is a sign that you hurt your ears. Do not use Valsalva maneuver - it will not improve your full ear sensation, and it can do more damage to your ears (as evidenced by multiple reports on this forum).

17. Many people get T as a result of taking ototoxic medication. From now on, you will want to ask your doctor to prescribe medication that is the least ototoxic of all medications he or she can use to treat you.

You can also use the brochure below to check whether the drug you have been prescribed is ototoxic:
http://hlaa-sbc.org/wp-content/uploads/2013/11/Ototoxic_Brochure.pdf

If you live outside of U.S., and your drug is not listed, make sure you use the U.S. brand name for your drug when you search this brochure. Some drugs are listed in this brochure but they cause tinnitus in very few people. You can learn this information by going to
https://www.ehealthme.com/ds/XXXXX/tinnitus/ (replace XXXXX with the brand name of the drug, for example

https://www.ehealthme.com/ds/prednisone/tinnitus/ )

The way to interpret these is: for Prednisone, since 1998, only 720 reported getting T as a side effect. This is low - imagine how many people took prednisone in the U.S. since 1998. We also see that over 65% of the patients developed T after taking Prednisone for over a month. So this means that if you take prednisone for less than a month (as will be the case if you take it for acoustic trauma), your risk is pretty low.

18. Be careful when it comes to the tests done by your audiologist. If you search this site, you will see many stories involving Tympanometry test. For example
https://www.tinnitustalk.com/threads/beware-of-the-tympanometry-test.23097/
https://www.tinnitustalk.com/threads/is-tympanometry-safe.18558/

It is possible that you might run into trouble if Acoustic Reflex Test is done (or that they do a Tympanometry test as part of acoustic reflex test), see
https://www.tinnitustalk.com/threads/warning-acoustic-reflex-test.25645/

20. http://hyperacusisfocus.org/research/earplug-use-2/
"While there are over 2200 posts on hyperacusis setbacks in the patient forum on chat-hyperacusis.net, no academic papers could be found using a pubmed search."

The fact that there have been no published studies regarding what causes permanent and temporary T spikes, means there is no scientific reason behind doctor advice to only protect your ears against noises that are known to damage the inner ear. They are basing this advice on studies that talk about what can damage healthy ears, whereas what can hurt us hasn't been studied (and the overwhelming number of testimonies on this site imply that sounds that can hurt us are Way quieter than the sounds that can damage healthy ears).

21. I protected my ears from even moderate noises, and wore earplugs whenever I was outside. My hyperacusis (H) got better and eventually I was free of H. It is possible that this happened becasue I would make sure to watch TV with volume set to medium. If you do that, you ensure that you are exposed to the kind of noise that will not hurt your ears, while building your tolerance to noise and healing your H.

22. Many of us believe that it is a good idea to never use headphones again, even at low volume. For more details, check out the thread below
https://www.tinnitustalk.com/threads/isnt-it-ok-to-use-headphones-even-at-low-volume.25287/

23. Early on, you might consider HBOT treatments. {For more information, click the link at the top of this post.}

26. If you can't get your mind off of memories of how you got T, don't worry - it gets better. A joke eventually stops being funny. Likewise, T and memories of how one got T eventually stop eliciting a strong emotional response...

27. https://www.coopersafety.com/earplugs-noise-reduction
https://multimedia.3m.com/mws/media...how-to-use-the-noise-reduction-rating-nrr.pdf

25. Here is a good overview of possible treatments. Use this forum to search for information about each treatment that you might be interested in
https://www.tinnitustalk.com/threads/tinnitus-—-possible-treatments-—-modern-medicine.26045/

19. Turns out that it is natural to relax and begin taking unnecessary risks once one's T goes away.
(e.g., see post 1 and 10 in https://www.tinnitustalk.com/threads/i-ruined-my-recovery.25514/ )
As a result, many people eventually have their T return. It is a very traumatic experience. We are given only a limited number of second chances. If you are fortunate enough to get a second chance - don't throw it away.

 

I'd say fight the good fight until you receive the respect and care you deserve.

Don't see non-cures as solutions. It's fine to go through treatments that don't get rid of your tinnitus per se, but don't tell the world that anything less than actual removal or lowering of the noise inside your head is good enough.

 

DO WHATEVER THE F*** YOU CAN TO RAISE AWARENESS AND BRING MORE ATTENTION TO IT! Ill never understand why other tinnitus sufferers don't talk about it. That's how I got it because no one around me said a damn thing. I found out they had it afterwards. Way to look out for people eh?

 

Very difficult question. I am sitting here with a blank mind.

I remember how I felt and I don't want to remember.

 

Attacking the anxiety is a meme, it's not gonna get anything done, and pray you don't have hearing loss tinnitus so you may be able to get rid of it.

 

oi what did I just read?

Meme status = Confirmed
but seriously

We share a common agreement here that a cure should be the ultimate goal and not habituation. However I advocate habituation as a way for tinnitus sufferers while they wait for a cure, would you agree with that?

Since we are both atheist and "edgelords" about it we know prayer is useless superstition

However I gotta call out your BS here dude, I don't see why TMJ induced tinnitus and hearing loss induced tinnitus sufferers will both not benefit from Susan Shore's device. I can modulate tinnitus with my jaw as well and I'm certain my T was caused by acoustical trama. Also from what I heard about the trials I think Susan Shores device will only provide temporary relief for tinnitus. It will end up as a life long routine of listening to tonal noises and being zapped 1 hour a day for once a week I imagine.

Hearing loss sufferers may have an advantage due to future therapeutics and advancements in science relating to hair cell regeneration and auditory nerve repair that may be a reality in 5 - 12 years realistically.

Gen Vec and Frequency Therapeutics have clinical trials in progress as well as 10 other bio tech firms ready to start the hearing loss race. Decibel, Affichem and Otonomy have drug candidates and clinical trial plans for hidden hearing loss via auditory nerve fiber and synapse repair and there is reason to believe this will have an impact on tinnitus and hyperacusis. We just have to wait and see.

 

I never thought about that. In the future it may be better to have hearing loss.

 

I read somewhere that 2 of the patients had their tinnitus go away after several sessions of using the device. They are also trying to figure out how it can be used to help nonsomatic patients, which is certainly a plus. Besides, with a another year to go, things could very much change and even possibly improve.

 

I don't think they are allowed to modify a device during clinical trials

 

It's hard to say due to alot of different Ts one is by loud music and they also have H, even though alot have this one I don't relate, two is low T again I don't have this one don't relate, three is a doubles those hearing loss/T & TMJ/T what can I say, fourth T with other sounds what I will say ignore & Stay busy. Fifth head T what I will say yes you are not imagine and yes it is T. If you get anxiety go to doc to deal with it, it is separate from T it is an extra goodie. Yes, I will say it not our imagination and the inner you better calm down fast, there are methods of treatment and I hope they give you relief.

 

I got Tinnitus back in 1991 after taking a sulfur antibiotic before a long flight and after about a year it settled down and became a background hiss that i got used to and pretty much stopped thinking about and i think there's a very high probability that you will get used to it as well. However, the lesson i just learned the hard way is that it can come back just as fiercely if not more if you don't watch what medications you take like a clinical trial pharmacologist! For example, ototoxic medications like NasaCort (which triggered my current outbreak of T) or high salicylate consumption (Aspirin, Sensdyne, foods) can re-trigger it, so once you do get used to the T or habituate, make dang sure to question every doctor's medication recommendation by scouring the web for any indications of causing Tinnitus as many doctor's continue to prescribe ototoxic medications without even warning you about the potential risks and also even check OTC medications as these companies apparently don't know how to test for T affects or just want to get the product to market maybe knowing it would be difficult to sue for T or other implications ie (NasaCort no warning label at all), greed is not good in this case, its downright criminal imo.

And almost everyday, i'm sending emails warning my family members about the dangers of medications, especially in this flu season and warning them that their doctors, unless they have Tinnitus themselves, probably don't have a clue about Tinnitus or think its just a temporary thing, but i can tell you that unless you have a caring family and a lot of work leave, it can upend your life in every way. I just finally got back to work as i'm now able to get 5 hours of sleep a night without sleep aid medication, but it took me 2 months to get here, 3 weeks of xmas vacation and 5 weeks of sick leave.

P.S. i think doctor's get desensitized to patient suffering because they see people with cancer and other bad diseases and just say "hey its only some ringing in your ear no big deal" and that kind of attitude is probably why there's a Tinnitus epidemic going on just like an opioid epidemic.
Example of doctor prescribing Cimbalta and causing T after only 2 tablets (2 pages down, Elaine Dec 6th 2017) she went in for what may have been a lesser problem imo and ended up with Tinnitus!
http://hearinglosshelp.com/blog/how-long-before-my-drug-induced-tinnitus-goes-away/
Elaine "........apparently, from all the posts, it was an epidemic! I immediately stopped the Cymbalta to thwart suicide – after only taking 2 pills (one each of the 2 days). The next day, I woke up with loud ringing in both ears. I continued to have pretty bad depression for about a week, but it eventually subsided. But, the constant loud ringing and buzzing in my ears has not stopped for one minute for 5 long months now"
So should her doctor be sued for not at least knowing about and warning about the possible side affects?

 

I used a decibel app on my commute in my car with the radio off and I had a reading peak of 100 dB from rough areas on the freeway. The ear plugs help a lot and I can hear just fine.

 

I agree to some extend with @Dubbyaman. However we people have this tendency of subconsciously believing that ailments and disorders are issues of the "people next door", until of course tough luck rings our bell.

 

awesome to read you're still doing better.