Looking for Help from My Tinnitus Talk Friends

Hi all - I am admittedly a newbie to the world of tinnitus- it's just been three and a half months. My day job is a bit unique (I am an actor on a show called Gotham), but just like everyone else here- I have to do things at work on a day to day basis that demand focus and laser attention. I feel like every minute of these last three months have been such a difficult journey and I don't know why necessarily today, but I basically hit a point where I thought that there is no way I can continue doing what I am doing with the electrical whooshing storm in my head.

My workmates and bosses are good people, but like most normal folk, they don't know what having tinnitus is really like. I cannot even say if mine is remotely like anyone else's. Mine feels more like an undulating electrical whoosh that lives in the right brain as much as the ear. I have a week off work and am going back west to seek the help of a hypnotherapist that the awesome musician Ryan Adams turned me on to. I love this forum (though I try not to linger too long) and take comfort that I am not alone in this thing. I can say, however, that the person I was before T and who I am now are very different. I hide from the world and am always in a state of mini-panic. Thanks to advice on the forum, I got pressurizing ear plugs for the flight and am looking forward to getting some hypnotherapy and a little acupuncture done at a place called the Chinese Institute of Healing in West LA. If you are out in LA, both hypnotherapist Kerry Gaynor and Chinese Institute of Healing come highly recommended. Thank you all for trudging this path so bravely, it makes me think that I can make it- sometimes for the long haul, sometimes for just a minute at a time. We are all in this together- DL

 

Wow, are you... who I think you are? Your character is HB? I will assume you are who you say you are (Internet, ya never can tell). If so, you could use your celebrity to help bring awareness to others about this difficult medical disorder, just a thought, recognize this is not something everyone would want to do.

Anyway, more important @dfl, if this helps you: I, too, am a different person than I was before I got off a transatlantic flight a little more than two years ago with the tinnitus that has been my constant companion ever since. I am a better person.

I am much more sympathetic to people who are in chronic pain or have severely disabling illnesses. I am much more grateful for my supportive husband and family, friends who carried me when I felt like I couldn't move forward, for work that sustained me. And I am more appreciative that I am basically in good health, despite this sometimes miserable condition. I try to take better care of my body now; before, I just took it for granted I could continue ignoring its needs forever. No more. Nothing in life is guaranteed.

Yes, it wasn't an easy journey. And when I was where you are right now, there were times I just wanted to quit. But honestly, do believe me: It DOES get better. Do whatever you can to get you through these times -- acupuncture, hypnotherapy -- whatever it takes. I PROMISE you, the day will come when you will look back and realize how far you have come. And that life still can be a precious, fun and wonderful thing, even with tinnitus.

All of us are here for you. Good luck.

 

Welcome to TT. Hope whatever treatment you will get will help your situation. One good thing is your T is relatively new so you never know if it will calm down to a less intrusive level after some time. In the mean time, you can try masking to help cope with T. I used to mask all day from the moment I woke up to sleep time (if I could sleep at all, lol). My ultra high pitch T requires high frequency nature sounds. Any thing is better than the high pitch shrill which can cut through most noises around me. But after a few years now, my brain is more hardened to this mad ringing (surely it is screaming while I am typing), and it can fade it out of consciousness when the brain is distracted with things. Couldn't do that initially but the passage of time and trying to stay calm and positive have helped the habituation process.

Also, to help lower T loudness, members here often recommend some good supplements, such as NAC, Magnesium, Zinc, B12, D3, etc., and reduced intake of salt, sugar, MSG, caffeine, alcohol etc. This works for some members and not all people. It never hurts to try them. You may also want to help yourself to get more sleep. Sleep deprivation is one sure way to fire up T. Get some bed time masking such as a sound machine or a sound pillow etc., so you can fall asleep better. Instead of sleep meds from the doctor, you can try natural alternatives such as Camomile tea, Hops, Valerian tablets, Melatonin etc. Check out this site on using natural herbs for sleep problem:

http://www.christopherhobbs.com/library/articles-on-herbs-and-health/herbs-and-natural-remedies-for-insomnia/

Also, since you are an actor, you may know that William Shatner also has T and he and the late Nimroy both got T from an explosion on a set of Star Trek. He and David Letterman did a show in 1996 talking about their T (Letterman has a 2-toned T himself). Watch this link:

https://www.youtube.com/watch?v=yCdx8aueK9I

 

I think @LadyDi just said it quite well, it really does get better for most people and it seems as if you are meeting T with some hope in your heart, despite the difficulty we all know. At least to me, after writing with many on TT over the years, I think that is a sign of better times to come. You are, truly, in the worst part of T. It is a traumatic thing and that takes time to adjust to mentally and physically. I think it probably took me about a year - it's just not a quick thing for your body to get used to, especially when you're really in a state of panic. Your brain has it ingrained that T is dangerous - you're in fight or flight mode, and you can do neither with T. It will abate in time, truly. I'm sure you've roamed through the success stories, and hopefully you can see that is the case for many. Be patient and kind with yourself.

It would seem your particular line of work perhaps does not have enormous leniency in taking time off for varying reasons, but I think it's good that you are for a bit. I think my second month in I took a month off and worked from afar. I was fortunate it was something I was able to do, but I just went off into nowhere and had people who had an enormous amount of faith in me take care of me for a while. That was probably the most pivotal part of my journey looking back.

Do not give up though, things seem terrible now, and trauma changes everyone, but I really do think there is a stronger you on the other side of this, if a different one. Change in life is inevitable, but that also means you won't feel how you do right now forever. Hang in there and know that we're all here for you, always.

 

Hi @dfl, thanks for sharing your story and for joining the forum! (I'll always be sad that Terriers didn't get more than one season... )

Anyway, I can promise you that you'll find that a lot of people here (myself included) know what those first few months with tinnitus are like--they are terrible. I echo what @LadyDi said above so beautifully--I do feel like a better person almost a year since getting it, for the same reasons she listed.

As far as the actual tinnitus--it's very possible that yours will die down over the course of a few months with the help of the people you are meeting with (not all the way but enough that you start feeling like yourself again). Mine started in my left ear and within a few months it felt like it was relentless in its intensity--to the point where I had a lot of sleepless nights and the undulating brain noise. I recall with horror one night where I felt like I was trapped inside my own body and tinnitus had taken my head over--and I felt like I would never be the same. After some time, and it wasn't one simple "aha" moment, rather a series of moments, I found that I was doing a little better. January 2015, I took my son to the Mall of America, the scene of where I had one of my worst tinnitus days, and found that I didn't notice it when I was there. February 2015, I was deathly afraid of doing it but more excited to see Kevin Garnett return to Minnesota and, knowing the crowd would be loud, attended his first game back and felt incredible (with earplugs). Little by little I also started practicing with my band more (again with earplugs) and using masking noise at my desk at work (KEXP from Seattle) and now I am back to where I was before tinnitus, in terms of my whole "self" (albeit with tinnitus that I would love to be able to treat, and may be able to with pharmaceuticals in a few years.)

Anyway, long story short, we're here for you and this is a good place for support. Best wishes!

 

To avoid any future unnecessary doubts regarding @dfl's story, we can indeed confirm he is who he says he is.

We are glad to see our members coming together to help each other.

—Staff of Tinnitus Talk

 

thanks all for your kind support- @marqualler there is no way in hell I could have handled the intense train of Terriers if I had T back then! part of what is scary is going from a place of complete confidence in craft to complete fear! glad you all are here

 

yeah , the first months are pretty hardcore ...

I tortured myself a lot with constantly checking it , whenever it was slightly lower I would start hoping it was getting better and when it didnt I felt like crap .Its a catch 22 situation really , I think its less likely to get better if you get super occupied by it and yet ,its a big challenge to not think about this all the time.
Having said that you still you still have a pretty good chance of it getting better if you are only 3 months in.

Undulating electric noise in the brain sounds similar to my T .

I have a friend that got rid of this in a few weeks and another one where it just stopped after 2 years.

I hear you on that , musician and producer myself...

Good luck with your acupuncture and hypnosis sessions , be sure to let us know how it goes.

 

Btw . This rain generator app has helped me a lot. You can eq it to your liking and save that in the URL.
I bring down the bass and bring up the highs until they somewhat hit that hi freq bzzz.

http://mynoise.net/NoiseMachines/rainNoiseGenerator.php

 

Bit off topic but your friend who's t stopped after 2 years, do you know what the original cause of his t was ?

 

Loud noise .

 

Believe me, many of us know what that "undulating electrical whoosh" sounds like. Rest assured the first months are the worst months. As you can see below my avatar, I attribute much of my tinnitus to stress, as do several other members of this forum.

I hear my tinnitus predominantly in the right upper quadrant of my brain, although it does often spread throughout the central front. I am very much a right-brained individual, and I use self-hypnosis to go to sleep at night, usually falling asleep within 10 minutes. If the T wakes me up during the night, I go through the self-hypnosis routine again. So, it's my opinion that if you are a right-brained individual, and especially if you are capable of imagining vivid scenes in your mind's eye, you will likely benefit from hypnotherapy. People can undergo painful dental procedures while under hypnosis, so the brain/mind is capable of ignoring a lot of unpleasant stimuli.

I also take one GABA 500 mg about 10 minutes before going to bed, plus a 3mg melatonin and a 100mg niacin (do not use the non-flushing kind), then another GABA 500 mg after I'm in bed. I've used self-hypnosis off and on for over 30 years, but this supplement regimen seems to calm my brain, making it receptive to auto-suggestions.

I wish you the best of luck on this journey that no one wants to take.

 

@dfl Firstly, I have to say I am a huge fan of the show, keep up the good work! Second and more importantly, it does get better. From personal experience I can say I was a wreck when it first started, and now (approx 3 months since onset) even though it has gotten louder I am coping a lot better. Don't get me wrong, I still have many ups and downs, but the downs aren't as bad as they used to be. Not sure what caused your T, but it would be a good idea to protect your ears from loud noise, just don't be over protective. As far as treatments go I never really had anything bring down the volume, but seeking a therapist has helped me calm down my emotions towards it which certainly helps. Also I think it is a good idea to find a good audiologist that specializes in tinnitus. They can give you lots of good info and may be able to offer tinnitus retraining therapy. Right now I am looking into white noise machines (similar to hearing aids) to help mask my T and hopefully habituate to it, until a true medical treatment is offered. Anyways these are my insights from my first few months so far, I hope they help in some way.
Good luck with everything!

 

I am the same. I don't want to hide from the world but everday i do it.

 

DL, please let us know how your hypnotherapy works. You are new to T so you may be one of the lucky people whose T goes away. In any case, you will habituate in time. Try not to look ahead and take one day at a time. it will get easier.

 

Autifony are around the corner, so within a few years, we'd have treatments. We have trobalt now, which I used and am cured...Also got rid of hyperacusis with keppra and trobalt combination. So this proves it is possible to treat either condition. I think many conditions there are drugs out there that can be repurposed for existing conditions. For example, trobalt can help with ALS, tinnitus and strokes.


KCNQ4 channel activation by BMS-204352 and retigabine.
Schrøder RL1, Jespersen T, Christophersen P, Strøbaek D, Jensen BS, Olesen SP.
Author information

Erratum in

• Neuropharmacology. 2003 Mar;44(4):553.

Abstract
Activation of potassium channels generally reduces cellular excitability, making potassium channel openers potential drug candidates for the treatment of diseases related to hyperexcitabilty such as epilepsy, neuropathic pain, and neurodegeneration. Two compounds, BMS-204352 and retigabine, presently in clinical trials for the treatment of stroke and epilepsy, respectively, have been proposed to exert their protective action via an activation of potassium channels. Here we show that KCNQ4 channels, stably expressed in HEK293 cells, were activated by retigabine and BMS-204352 in a reversible and concentration-dependent manner in the concentration range 0.1-10 microM. Both compounds shifted the KCNQ4 channel activation curves towards more negative potentials by about 10 mV. Further, the maximal current obtainable at large positive voltages was also increased concentration-dependently by both compounds. Finally, a pronounced slowing of the deactivation kinetics was induced in particular by BMS-204352. The M-current blocker linopirdine inhibited the baseline current, as well as the BMS-204352-induced activation of the KCNQ4 channels. KCNQ2, KCNQ2/Q3, and KCNQ3/Q4 channels were activated to a similar degree as KCNQ4 channels by 10 microM of BMS-204352 and retigabine, respectively. The compounds are, thus, likely to be general activators of M-like currents.


Retigabine works primarily as a potassium channel opener—that is, by activating a certain family of voltage-gated potassium channels in the brain. This mechanism of action is unique among antiepileptic drugs, and may hold promise for the treatment of other neurologic conditions, including migraine, tinnitus and neuropathic pain.
New research suggests that an already-approved drug could dramatically reduce the debilitating impact of strokes, which affect nearly a million Americans every year.In the study, one dose of the anti-epilepsy drug, retigabine, preserved brain tissue in a mouse model of stroke and prevented the loss of balance control and motor coordination. Researchers from the School of Medicine at The University of Texas Health Science Center at San Antonio conducted the study, which was published Feb. 3 in The Journal of Neuroscience.

- See more at: http://www.med-chemist.com/2015/04/retigabine-drug-could-reduce.html#sthash.8djjFBie.dpuf

 

This should help-

Playlist: Mix - Mozart - Sonata for Two Pianos...

Mozart - Sonata for Two Pianos in D, K. 448...

http://www.ncbi.nlm.nih.gov/pubmed/23025336

 

Trobalt may be a good idea for "fresh" tinnitus!

 

This is one of the best paragraphs ever written.

 

Probably not good for an actor who needs to memorize lines and stay on cue. Trobalt can have side effects that would interfere with his profession. If he's not working, though, it's worth a shot. Depends on the severity of his tinnitus.

 

I think this speculation about Trobalt side effects should really stop.
I've been on a fairly high dose and have no side effects.
Unless one trys it it's hard to say how it affects you.
Some people are more sensitive to drugs than others that's for sure but being certain that this will affect him in a way you're saying is not known to anyone unless he tries it for himself.

 

@dfl

My T is a result of Meniere's Disease. When my T first came on, it was a BEAST for sure! It started in my left ear. When it spiked it moved to my head and right ear...and during the spike I could not mask it. You did not state if you have any hearing loss, but there are hearing aids available with masking for T.

I want to you know, I am a year in and it does get better. I can tolerate T much better. Sleeping can still be somewhat of a challenge at times, but I manage sleeping without prescribed medication. I take over the counter melatonin (6 mg).

 

Update from LA- the hypnotherapist and I decided my brutal dependence on nicotine had to be addressed first before I try and deal with my tinnitus- so i am day four kicking nicotine- my T is spiking- but I am sure its from the anxiety and the kick- but the overall health benefit will be beneficial in the long run- how are y'all doing out there?

 

wow, I need my cigarettes and coffee , I can't give that up too.
I wonder why he suggested that though , did he feel that plays a part in your T ?

 

Also , you are early on , have you considered Trobalt ?

 

It might help to know that tinnitus is somewhat common with actors and entertainers. If you look up "celebrities with tinnitus" you'll find a list of musicians and actors who have it (you should be on the list, lol! Love your work in Vikings and Sons Of Anarchy). From experience I can say working on a film set is loud, and it's easy to find a film shoot where people aren't taking proper safety precautions in order to get the shots on schedule. I carry earplugs at all times on film shoots just in case they're doing something I think is dangerously loud, but I'm not an actor (I do VFX) and I have long enough hair that hides ear plugs so no one knows.

In addition to Shatner and Nimoy, Steve Martin got it after a gunfight on Three Amigos. Ronald Reagan also got it from a gunfight scene. When people fire guns as a hobby, they wear ear protection, actors should always be doing the same with prop guns and explosions in my opinion, blanks are actually louder than regular guns because they usually have more powder in them. Let them shoot around earplugs or use VFX to fix it. They make some pretty small ones that are hard to see. Though, a lot of people do get it for no obvious reason, so maybe the noise isn't the issue. I don't know why I got mine. I've heard that something like 95% of tinnitus patients never have a cause identified.

It's good you're cutting nicotine, good luck with that, that's a hard one. I've heard it causes stress at first to quit, but it should help you have a lower overall stress level later. I've heard that the top things that can make tinnitus temporarily louder are smoking, drinking, lack of sleep, and stress. Which is really hard to avoid if you're in the film industry, but not impossible. Good luck!