Update — Where I Am Now on My Tinnitus Road!

Firstly a big thank you to those who have posted encouraging words on my threads - I may not have replied recently as I decided to switch off from reading and researching T and try to take on the advice all you guys wisely offered. Its the way I work is I guess I needed time out to get on with this thing and let the Anti D's do there thing - Citalopram has now helped me greatly ! After 4 weeks Im turning the corner - and at long long last started to sleep again !

I'm back at work part-time at the moment and I feel like part of the old me is back albeit with my new attachment of an annoying noise but I dont lsiten for it anymore - I dont walk into quiet rooms and wait for it - I dont test myself and stick fingers in my ears to listen if that makes a difference ! I do hear it at night but I've now 'got used' to the masking noise that helps me - before no matter what I tried the masking noise annoyed me and my phone got launched acrossed the room!

Im in control and Im on my way back ! Im now ready to read up again on how to look after my hearing to try and prevent T getting worse and also interested in natural sleep help ideas for when I do have a few bad nights again - which I guess I should expect.

I have learnt some valuable things from this whole experience - STRESS is a major factor for me - I have had a really stressful year and the T maybe is a result of this- Im hoping it will as the ENT doc said 'settle' once I relax and de-stress. Ive started listening to relaxing guided meditation its fantastic and helps me focus on positive thoughts - and I have had wonderful support from friends and family and work! Sometimes when things are down in your life its then you reaslise who and what is important!

To all you regular forum guys - your are so so so right in all your wise words of support and I thank you all - and for anyone new to this T thing - it DOES get better, ASK for help, you WILL get through it, now with 6 weeks behind me Im on the road to getting my life back on track and I feel great!

Cher x

 

You've treated the anxiety. Well done.

 

Yes Robert you were so right ! With anxiety in check I'm ready to deal with this and learn coping skills. Ty for your advice I found it v supportive

 

Meds work. You'll be able to taper off eventually. Use a pill cutter (pharmacies sell for cheap), so you can taper in very small amounts.

 

Glad your old self is rising from the tar pit. Knew she was still under there, alive and breathing.

 

TY Markku - I have found the web site v v helpful and would like to offer support to others but Im still very new to this and learning a lot as the days and weeks roll by.

Its such a frightening thing to happen oneday its 'what is that noise' the next day ' can you hear it' a week later 'maybe its just me' an other week ' maybe I should see a doctor' then bingo - you probably have Tinnitus and your cards are marked - off you then go on a roller coaster you wish you could get off !

I reckon Ive slammed the brakes on my roller coaster ride - and Im learning to cope - slowly!

Let me know what your plans are and I will see what I can do to help

Cher

 

Hi,

I got T in June and I can relate to what you refer to as the roller coaster. I mediately concluded with my sound not being right and I guess I already knew I had a loud T before going to the doc. The internet is vast on this topic. The ENT "expert" further hammered the diagnosis down to the floor: Tinnitus with no cure. But I'm getting sick of doctors making people sick of fear and hopelessness, it's like they really dont want to see us get well? Some medical people are extremely ignorant and my first impression with the T is how hopeless every doctor thinks it is, but is is WE that have the thing - not them. We know what works for us in the long run.

I just want to join you in your praise for this forum. I've been reading it for some hours now and this is a great source of positive inspiration. My first goal is to try and find a strategy for my anxious mind. The T scares me, I must admit, at the same time I find strength in reading about people actually getting rid of their T. I've read alot of scientific reports about T now and I think its good they finally treat this as a neurology symptom, I guess the general people would react if I said I have a brain damage but that's what T really is and it looks like the scientific T research is in the brain area for the most part.

 

Hey Cher...I have just started on this board it we've had a very similar journey. I came down with my T after a transatlantic flight tow months ago and soon developed a panic response. I didn't see how I was going to make and immediately started imaging myself as being disabled for the rest of my life. But as Robert has said, got the anxiety fairly controlled with meds and cognitive therapy. While I have some bad days, I am so much better and ready to move on, Am looking forward to getting some good advice here.

Markku, happy to help with your project. More people need to know about T: how to prevent it, how disabling it can be to some and most important: that there ARE things you can do to help yourself, even though the first words you often hear from your ENT is "there is no cure."

 

Hi Lady Di and Per - we are so not alone in this - and it sounds like ( excuse the pun ) we all go through the same fears and feelings as this thing takes hold of us and we start to learn to take control of it !

As I talk to people and 'news' spreads round the small village where I live I learn about loads of people who have had T after a bout of illness - it appears to be a common thing ! Or maybe I'm getting to 'middle age' OMG mid 40's arghhhhh and things are starting to head south (lol) and I hear noises !

I can now make a joke 4 weeks ago I couldn't!

Lady Di you do sound like we have been going through this at the same time and have started to get things on-track now ! Keep in touch how you are doing and what you learn along the way to help us all.

Per - If you still have anxiety over this T thing - please please get a Doc on-board to help you with that - the mind goes crazy and like me you have read up on the matter - then the brain starts going into overdrive and the noise is soooooo much more louder and annoying ! I truly truly now don't hear mine AT ALL through the day - and I did!! I couldn't walk into a room to put clothes into the kids drawers as 'that room' had no background noise - I now don't think about it - OK its there I know it is but I don't wait for it to 'start'.

Nights are hard but I'm dealing with it slowly - little steps lead to big leaps ! I actually took 3 weeks off from any WWW browsing and didnt allow myself to do any more research UNTIL - I was in control - I put myself in the hands of an excellent GP who listened and sorted out the anxiety - Im on a 6 month program now and Im 6 weeks into it.

I hope you soon start to find the way forward to help you deal with it - some people do have a tough time - keep ya chin up and ask for help to get you on the right road

Cher xx

 

Thanks Cher hang in there. You taking control of your situation inspires me. Had some setbacks this week, including return of panic attacks, so it was good to read your post.

 

Ups and downs - this roller coaster !! Just had a couple of weeks again struggling but re-visited Doc - he is keeping me on the ADs for a little longer - bit of a wobbly due to work issue knocked my confidence - sleepless nights again the pain of that only just healing and the memory was so raw !! BUT - needed a bit of relaxation time - the reassurance of the Doc and the support of the T family on here and Im feeling better again - a nights sleep is wonderful and a glass of wine - planning a weekend packed with fun and I hope more sleep !!! TY to my T family for the support you give xx

 

Hello dear Cher, have been thinking of you. So sorry you hit a rough patch... As you said, it is a roller coaster. But it sounds like you are taking care of yourself, getting the help you need. And yes,nothing helps like a good night's sleep and a glass of vino!

My ears have been super loud lately. I finally have my appointment with the Unof Miami docs this week, my entry into their tinnitus clinic. I am so ready to get on with some TRT or sound therapy.

Hugs from across the pond.

 

@Cher69

Keeping your mind peaceful--whether through medication or meditation or just plain chit chat--is critical to getting better. I'm sorry you had a set back, but remember that this is normal! We all have set backs. I'm a year into this, and still have very bad days. But I no longer take these days personally: I accept them for what they are--just a bump in the road. Our minds are complex and everything interacts with them. But our minds are also capable of healing, and that's what everyone should achieve. It takes time, courage, and commitment to plan.

If you're under stress at work, this could definitely aggravate your tinnitus. Staying on the anti-depressants are probably a great idea. If you find a specific antidepressant is not working, try another one. They are all a little different. Some focus on neurotransmitters that are responsible for anxiety while others treat mainly depression. If you do experience anxiety from work related issues, here's a reference to a few anti-depressants:

http://www.webmd.boots.com/anxiety-panic/anxiety-antidepressants

@LadyDi I'm glad you're trying TRT or sound therapy. Are there any considerations that would make you choose one over the other? And, by sound therapy, do you mean Neuromonics?

 

@LadyDi Good luck with your appointment keep us posted - @jazz TY for the support I read your link and its good to be aware of the other types of AD's - the doc did say if I still feel wobbly in a couple of weeks to go back - so will see what the week beings. Back to work tomorrow after a busy Bank Holiday Monday off - usualy things - painted the garage door and cut the hedge ! Fingrs crossed for a good sleep to tonight for all of us - Cher x

 

Hey @jazz: Nice post for @Cher. You said it so much better than I did. And I agree: Work stress when are you dealing with T is a bear. I am feeling better than I was a month ago but now they are back to putting additional projects on my desk -- 10 hour days are the norm around here -- and I am nervous about how it will go.

And I like this thought from you to Cher: "Don't take the bad days personally. They are a bump in the road." I stopped calling them "bad" days awhile ago (my therapist suggested something like "loud" or "anxious" days might be more helpful, as you are then just calling them what they are, rather than negative labeling). But now I think I will call them "bump" days.

So yes: I FINALLY am getting my start at University of Miami, where they have a large tinnitus clinic. I already have been evaluated at one of the other three T specialty clinics in our area, which was connected to a large private ENT practice. But I decided I would rather go the university route, as they also do research there, which might give me a better shot at experimental treatments that come up. Also, they have psychologists/psychiatrist on staff, unlike the private practice. Given that T is as much as a brain disorder as an ear disorder, and has sparked an anxiety response from me, that seemed critical.

I know that Neuromonics, hearing aids like Widex and maskers will be among their options. It also appears that they offer TRT as well. I will need to be re-evaluated by the university audiologists and will see what they suggest. You are so well-schooled in these matters: If you have any thoughts on what I should be asking them, early on, I would love to hear them.

I have a little high frequency hearing loss, but nothing serious. I also have a bit of hyperacusis, I'm afraid, although nothing miserable at this point. On a very low dose of anti-anxiety meds and in cognitive behavioral therapy. Also am trying acupuncture. While it hasn't helped my T much, sure has helped relax me!

Blessings for all the wise advice and unconditional support you give to us all here at TT.

PS: I love your avatar! You probably can tell I'm a cat person, too.

 

@LadyDi Thanks for the kind words! I likewise love your avatar--a literary cat!

Ten hour work days! And you're a journalist so you're really under pressure. In my junior year of college, I was an editor for the school newspaper and it was quite stressful. Long days and always a deadline! (Our advisor wanted us to feel the real pressures of a newspaper.) That experience encouraged me to go to graduate school--where the deadlines were not daily! (I did not pursue journalism or English in graduate school, however, for I desired a career change.)

Regarding therapy choices, flexibility should be your number one priority. You may have to try two therapies until you know which one works best. With hearing aids, some audiologists offer a thirty-day trial period. The trial period won't cure your tinnitus, but you might develop an idea if the treatment will eventually help it. The same may be said for Neuromonics. Since you'll be working with the same audiologist, you might ask about a trial policy.

Along with the sound therapy, counseling will be critical. All studies suggest that sound therapy is not as effective when offered alone. TRT and Neuromonics each offer their own protocols. Widex's Zen2Go also offers counseling--or should offer it--since many audiologist use the hearing aids' fractal noises as a form of TRT. Will you continue with CBT? Or use it to supplement your sound therapy? Your treatment team will advise you accordingly.

Of the two treatment modalities--hearing aids and Neuromonics--I prefer the former. Research supports the use of hearing aids for people with tinnitus--even if a person's hearing loss is only slight--which is my case. Of course, many people choose Neuromonics. Tested in three clinical trials, Neuromonics is loved by many audiologists. But the treatment is very expensive. (So too is Widex's Zen2Go hearing aids.) I did not choose Neuromonics, however, for music irritates my tinnitus.

Besides Widex, which employs fractal tones, you might also consider Starkey's Xino Tinnitus. That's what I use. Starkey utilizes white noise, but the sound is subtle, and it is matched to your tinnitus frequency. This matching makes all the difference! Your tinnitus blends in with the hearing aids' white noise, and thus your sound becomes less noticeable.

I might have a link for a Widex's tinnitus presentation. I'll look for it. And I'll think of some questions you might ask your team. But I believe that offering you flexibility is probably more important than any questions you might ask them. Tinnitus is such a personal experience; your team may offer you suggestions, but they cannot know in advance what will work best for you!

Take care,

jazz

 

Thanks so much, Jazz, this is great.

So by flexibility, you mean: the ability to first try the therapy, and the ability to try another if the first does not work well? At the private clinic I went to, the told me there was no Neuromonics trial period, which I thought was very unreasonable. Florida law mandates a 30-day trail for all hearing aids.

Unless the team tells me otherwise, I intend to continue my CBT while I utilize the sound therapy counseling as well. My therapist has gotten into underlying issues with my anxiety that go back to before my tinnitus but just never were apparent, which has been very helpful, and I want to keep moving forward with her.

And my other big question: Is a hearing aid basically a masker? And if so, will it help me habituate? While I don't imagine myself ever being "free" or "cured," my goal is to get to the point that I basically can ignore it most of the time. I was drawn to Neuromonics originally as it seemed focused on habituation.

Appreciate the many ways you are helping me and others. My guess is tomorrow, I just see the docs and have (yet another) hearing test, not the tinnitus team. So I have some time before I make these decisions, although I do want to ask the doc good questions. This is my FOURTH ENT specialist I have seen in three months.

 

@LadyDi I'll look for that Power Point Presentation tonight and will post it on a new thread. Make sure you get a copy of your hearing test. I have copies of all my hearing tests, which I keep on file.

 

@Markku Thanks!

@LadyDi I'll post here.

First, Markku's links provide an excellent resource for understanding Widex Zen2Go, which is an excellent hearing aid that I've discussed above.

Second, you are correct in what I meant by flexibility. Since these treatments are so expensive (Widex's Zen2Go is probably around $5K for two hearing aids and Neuromonics is around $6K), I think it's imperative you are given the flexibility for a test drive. Most likely, your insurance will not cover either therapy.

If Neuromonics doesn't offer a trial period, I would first try the hearing aids. Like I've mentioned, Widex does have a tinnitus hearing aid; but so does Starkey. The latter is less expensive, but I wouldn't let price be an issue since my Starkey's cost $3800--not a significant difference from the Widex in my opinion. Rather, it's what sound you prefer; each offers different noises.

Hearing aids are not maskers; the noise they offer are supposed to help your brain learn to ignore the tinnitus signal. The same is true for Neuromonics. Maskers, on the other hand, are generally used to cover up your tinnitus. But they are not used typically for habituation. If you look at the web links on Widex's hearing aids, you'll see the differences. So, yes, the purpose of Neuromonics and hearing aids like Widex's Zen2Go is to facilitate habituation. The process is slow, but within six months you should see significant improvement. I did notice with the hearing aids, however, that my tinnitus initially got louder for a few days. This was just my brain getting used to the hearing aids. After a few days, the spike went away and I began getting better. I now have many days when my tinnitus is very low, and I am able to work normally. My sleep also improved with the hearing aids.

About your hearing tests, if you've recently had an audiogram you don't need another one. I've only had two audiograms, but have seen four health care providers. Instead of getting a hearing test with every new audiologist you see (or physician who uses the audiogram to ascertain if you have conductive hearing loss), just bring your most recent audiogram. If it's within six months, the health care provider should accept it. That way you'll save yourself a few hundred dollars.

Regarding visiting multiple ENTs, this will become very costly. I saw one ENT and two Neuro-otologists. The latter two were both chairman of their departments and ivy league educated. (I'm fortunate to live near two world class universities with teaching hospitals.) All three visits were a waste of money. Perhaps, I could've seen one neuro-otologist since a regular ENT knows almost nothing about tinnitus. While a neuro-otologist may know about tinnitus, however, he or she probably can't help you. (Except for a few disorders--like an accoustic neuroma or middle ear disease--tinnitus cannot be cured.) Though I saved myself money by declining an MRI for an accoustic neuroma, which I did not have since my tinnitus was caused by a barotrauma, I still spent over a $1000 to be told I had to "learn to live with it." That money would've been better spent at an audiologist who provided tinnitus therapy.

I don't know what your hearing loss is, but if you have a 30 db threshold in the tinnitus frequencies, like I do, you should benefit from a hearing aid. You don't need severe or even moderate hearing loss to benefit. You only need minor hearing loss within the tinnitus frequencies, i.e., 4 hz through 8 hz.

Here's the information on how to read an audiogram:

​

http://www.hopkinsmedicine.org/hearing/hearing_testing/understanding_audiogram.html​

Here's the Widex link that offers a comprehensive explanation of tinnitus and sound therapy. But I warn it it's long and you might want to start with Markku's links:

http://www.powershow.com/view/14170-MWQ2O/Robert_W_Sweetow_Ph_D_powerpoint_ppt_presentation​

​

Here's a study on Widex's hearing aids and tinnitus. This is one of many studies that suggest hearing aids help people with tinnitus. See TT's hearing aids posts for more information:

http://www.ncbi.nlm.nih.gov/pubmed/20807482​

Hope this helps!

 

Does Widex Zen have a superior white noise than ReSound or Starkey? I only have a little experience with the ReSound Alera, as that is the brand the audiologist I seen uses. Her counterpart uses Starkey at the same local clinic.

ReSound has a soft hiss for the white noise. I was mistaken that I thought there was 2 different white noise settings....but it actually is 2 different volume settings on the hearing aid. Also, more variable settings of the volume with the remote.

Looks like Starkey, ReSound, & Widex all have youtube videos of their tinnitus model.

 

The Widex has some type of fractal white noise that bothered jazz, as I recall. I am not sure if mike b. has tested any others besides the Widex Zen.

 

@just1morething You are right, the fractal tones did annoy my tinnitus. I personally liked some of them (there are several to choose from) but my tinnitus became irritated after playing the fractals for several minutes. Certain sounds just spike my tinnitus. I do hope you're doing well with your ReSound!!

@Markku For some reason, some white noise irritates me; others do not. I believe white noise can be divided into broad and narrow band.

The Starkey hearing aids provide individualized white noises that are generated from an person's audiogram. So perhaps Starkey is actually providing a narrow band noise from within the white noise spectrum. I don't know. But someone acquainted with audio sounds might understand this.

I'm am not familar with ReSound's white noise. It might be pure white noise or tailored to your tinnitus, like Starkey's. I do know Widex's white noise is generic--like the sound you get from the Simply Noise app, for example. And Widex lets you choose three sounds--one of which may be white--for your tinnitus sounds. I also know that fractal noises are supposedly relaxing--just as music is relaxing. In this respect, Widex and Neuromonics do share similarities--though the former also offers amplification, which is known to stimulate neural networks. That's one reason why I believe hearing aids are more effective than sound therapy alone. But hearing aids only work for people only whose hearing loss is below 8 hz and within the tinnitus ranges.

 

Hey all: Don't mean to hijack @Cher's thread and will post on my own as I progress with my U of Miami analysis. But just wanted to update you all: My appointment with the university clinic went very well last week. No silver bullets. But it was great to be around ENTs who understood what people with tinnitus go through and that yes, you can do SOMETHING even if you can't cure it.

For starters, they have an acupuncturist on staff. And the audiologist spent a lot of time with me, talking about ear protection and sound sensitivity... didn't just run tests. I had thought and hoped they had a psychiatrist on staff, given my ongoing anxiety issues, but alas, not the case. They had a referral network but told me there weren't any psychs in our area that specialize in T. So I probably will stick to the one I have, who I like.

Best news: Instead of waiting yet more months to be seen, I was booked for my tinnitus evaluation right away. So I go on Thursday! Thanks,@jazz and @Markku, for all the info above. I am sure I will have more questions as I go forward.

And thanks, @Cher69,

 

Hmm... for some reason, my reply window has shrunk... And I can't edit.
Anyway, thinking of you@Cher69, and hope you are feeling better.

 

Remember the good days you have had with the T that will help you get through the bad days. Just know relief is around the corner will get you through the rough patches...

 

Hey @LadyDi hoping your coming appointments give you positive ideas to help and build confidence that you can and will cope and find your way through. I always feel better after talking to a professional who listens and cares and Ive found support from everyone. Im wobbly at the moment my anxiety is rocky and my sleep rubbish Ive decided if by next week Im not feeling better and sleeping better Im going back to review the Anti D's as I feel they are not helping as much. Bit confused at the moment for the first time in ages I cried feeling a bit sorry for myself !!

I dont have time for that got life to live just need to sleep at the moment and not sure which way to jump at the moment
Oh well hope for a good week or at least a few days soon - keep us posted on your appointments and how you get on
cher x