Extreme Multiple Tinnitus (6-8 Sounds) — How to Survive?

Discussion in 'Support' started by snow86, Apr 30, 2015.

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    1. snow86

      snow86 Member Benefactor

      Tinnitus Since:
      2006 - Extreme T since 12/2013
      Cause of Tinnitus:
      see "information" on profile page. Crippled by extreme T

      I would like to share my curious case of my extreme Tinnitus.
      Maybe theres somebody out there with similar nightmarish multiple tinnitus (6-8 simultaneous sounds) who can give me some advice on how to further survive this.

      Im 28 years old and have a medium hearing loss ( using hearing Aid on both ears) and a medium case of hyperacusis.

      Im not new to T. In 2007 I got a chronic "normal" 6Khz tinnitus (medium volume) after some severe studying/exams.
      It was hard to get over it but after some months and new hearing aids, the T didnt matter anymore and i almost didnt notice it while wearing the hearing aids. I had it beat. (its still there in my head tho)

      Now 1,5 years ago (Nov 2013) I experienced some severe stress on my mind and body. Got a new stressful job and I had my wisdom teeth pulled. 2-3 days after I got those teeth pulled I woke up with a new T-Sound. It was (is...) exactly like a washing machine. A very low (~200hz), extremly loud sound.Unlike the classic high pitch tinnitus, It's got kind of rotation speed, like an engine or like a jet turbine.

      That sound was varying in volume. My Dentist diagnosed my jaw with craniomandibular dysfunction. I had to wear a splint on my teeth. But it didnt help.

      I had visited the usual doctors (ENT) who only give out those usual blood thinners. Of course that didnt help (like in 2007). I did a week in a tinnitus clinic in Berlin. But the "treatment"was very disappointing and is a bad joke to severe tinnitus. Just some daily deep relaxation exercise and talks with psyschologists and fellow t-sufferers.

      Thats when the depression set in. I just couldnt live with this new monstersound, it was (and is) pure torture.
      I could not return to my new job and was fired after my absence.

      But that was just the beginning. Because of the depression I went to a psychiatrist. And over the course of 6-7 Months I got various antidepressants. (Citalopram, Venlafaxin, Quetiapin, Mirtazapin) Maybe some of these are called differently in the EU. There are the german trademarks.
      In that course of time (6-7) Months I got like an additional T-Sound every month! Not only I got more sounds but all sounds became louder. Im not sure it if was that downard depression-tinnitus spiral or the
      Meds that worsened the T and added all these sounds. Im quite sure that the Venlafaxin is very bad for Tinnitus. None of these Meds but Mirtazapin helped me with my Depression.

      Almost all of those additional Sounds were(are) very low.
      Now after more than a year I have like 6-8 T-Sounds that are like: washing mache/turbine (the worst one), bubbling/boiling water like an electric kettle, windstorm, electric sounds like an alien ship landing..those are the low/bass sounds...then I also got 2-3 additional high usual sounds in the range of 6-10khz.(those high sounds are not that annoying, the low sounds are killing me)

      All those sounds are very unstable. Every day is a different mix of sounds and each sound has a different volume every day. Methods like TRT and similar are useless.
      When I wake up, I have like 2 quiet sounds and in the next 1-2 hours the rest of the sounds "wake up" and all of them become louder. On most days the sounds get more and louder over the course of the day. The maximal volume is like you would listen to loud music. It's like standing in a Storm while there is a jet plane landing next to you. Its just a ******** nightmare.

      Sometimes I get a good day. And the sounds do not get louder after waking up. but thats like a one day in ten. Its impossible to habituate to these sounds, its just too many of them and they are too intense.
      And its no comparison to the first Tinnitus I got in 2007.

      Things that I tried in the last 1,5 years:

      - Usual medicine like bloodthinners (when the T was in acute state)
      - ENTs, Tinnitus-clinic in Berlin, extensive Audio-diagnostic (brainstem and stuff)
      - MRI Head imaging, Doppler of neck veins
      - Psychiatrist/Several antidepressants (probably made the T worse and created several sounds out of one)
      - Seeing a psychologist
      - Splints for CMD of the Jaw, extensive diagnostics of the Jaw
      - Physiotherapy for Jaw/Head, Osteopathy
      - Massages, Acupuncture (TCM), Deep relaxation (PMR)
      - Qi Qong (just started)
      - Burned through a pile of cash for the stuff above...

      Nothing of those has helped.

      I just dont know how to go on. When the T reaches the maximum volume/intensity then im thinking about killing myself everyday and as you can see im not unexperienced with Tinnitus and already tried so much stuff. I just cant believe that there is somebody out there with such severe Tinntius. I would have never imagined that there can be such severe T in one's head. It is just unbelieveable to have so many nightmarish sounds in the head. I wish i'd never taken all those antidepressants crap as im pretty sure they worsened my T by far. And from what im reading about antidepressants and worsening the T its pretty obvious...
      Well, none of the psychiatrists explains the risks of worsening the T with antidepressants.
      I just wish the tinnitus would be still the same when it began 1,5 years ago. Back then I wouldnt have imagined that its gonna be so much worse, when the T was already unbearable.

      I tried getting off the current antidepressants to see if the T will be different or better. But after 2 weeks without Antidepressants I couldnt handle living and cried all the time and just wanted to kill myself the next day. So far the current ADs are the only things that keep me at bay...

      Now, is there a reason to go on with this nightmare? Every day is worse than torture.
      Obviously, theres nothing right now that can help.
      Of course, im following the current hot topics like Retigabine/Trobalt, Autifony and Microtransponder vagusnerve therapy VNS.

      I dont know how long I can go on with this. Im considering taking Trobalt like some users here in Forum. But the risks of becoming blind or damaging the eyes are somewhat of a trade-off :) I could get my hands on that stuff tho.

      As for Autifony...it doesnt seem that there will be something coming soon and the trial results are not so consistent.

      Microtransponder told me that they will bring the VNS to germany in 2015. But im not sure if thats true and still it's a long (+expensive) shot then.

      I dont know if its worth to hold on for a little longer. As all of you fellow T-sufferes know, the forums are full of "life long tinnitus" remarks and other claims like "there will be no help in the next 10 years"...Well I know that its impossible to last that long with this kind of extreme T.

      thanks for reading and for potential advice!
      Sorry if some sentences are not perfect. English is not my native language.
      • Hug Hug x 2
      • Friendly Friendly x 1
    2. Telis

      Telis Member Hall of Fame

      Tinnitus Since:
      Did you have any change in your T when you tapered off the ADs? I am on Venlafaxine as well, I am pretty sure this stepped up my T. I tried to taper and things actually got worse (new tinnitus sounds), I went way too fast. Maybe if you come off slower you would be ok. The crying and additional intense feelings will go away, this is withdrawal. I had the same, I'm down to half my dose now and feel the same as I did before I cut (about 14 months now). I still feel aweful from T but I'm back at my baseline, there is definitely an unusual spike of emotions coming off this garbage. I am hoping long term that coming off this stuff and detoxing my brain will help, not sure if it will, but that's what I hope for.

      I have the same thing as you, a ton of different tones that get so intense that I pass out at times. I know this sounds weird but I actually become fairly non functional and lay down and fall asleep instanty. I guess my body says enough as shuts off. I wake up, things are always a little lower and within an hour of being up the electrical storm is in full force, my head is swimming with noise, I can't count how many sounds I have, there is just too much happening there.

      Anyway, I'm not much help, just thought I would chime in with my experience with Venlafaxine, I think it's nasty stuff. My T seems to be on a never ending upswing, I really feel that these ADs are still making things worse, they are just a nightmare to get off of. Recently I tried to cut a few beeds out, opened the capsule and cut just a few for three days, I started getting fleeting T bursts every hour or so, sore ears etc. this shit can't be good!!!
      • Hug Hug x 2
    3. Dr. Nagler

      Dr. Nagler Member

      Atlanta, Georgia USA
      Tinnitus Since:
      Hi Snow!

      To briefly summarize your very challenging situation: you have moderate sensorineural hearing loss requiring binaural hearing aids, you have hyperacusis, you have a number of different tinnitus sounds, you have secondary depression, you feel that "every day is worse than torture" (and who could blame you for feeling that way!!??), you are following "hot topics" like RTG and VNS with great interest, you have spent a ton of money on stuff that has not helped you a bit, and you have lost your job and are currently out of work, and feel that "methods like TRT and similar are useless" in this sort of situation."

      May I ask why you feel that methods like TRT and similar would be useless in your situation?
    4. snow86

      snow86 Member Benefactor

      Tinnitus Since:
      2006 - Extreme T since 12/2013
      Cause of Tinnitus:
      see "information" on profile page. Crippled by extreme T
      Thanks for your story! Im sorry that you have to suffer from such intense mutliple T as well.

      I would highly recommend to switch to another ADs. Venlafaxine didnt help me a bit and when I was coming off it (over 3-4 weeks) I even had short electric bursts in my head and dizzyness. This stuff is just evil. I did not experience such ugly sideeffects with any of the other ADs. I was also told to take out some of these beads (progressively) over two weeks and then I got the quetiapin (it worked a lot beter (for me) and had no side effects beside some hunger). Same with the Mirtazapin...I switched because I have the same feeling that the ADs are making the T worse. I mean im 1,5 Years into the "new" T and over the period of time the T has only progressed into multiple sounds and is so much more intense.

      As for your Question if there was any change in T while coming off the ADs...Well it didnt get better BUT I only lasted for 2 weeks without ADs. Being "down" and crying and wanting to kill myself I needed the stabilizing effect of the ADS. I think you're right and the detox has to much longer than this...Im still no sure how to get off the ADs and if ts even possible with such T. Natural herbal ADs like passion flower (think thats the name) seem to be to weak.

      Hi Dr. Nagler,

      You need to meet certain conditions with your Tinnitus for TRT to work i.e. stable sound(s) with same frequency every day. If you have many sounds which even vary every day in intensity and frequency then its Pointless.
      Whats more problematic, the new low sounds have that kind of rotational speed oder like wind, theyre constantly changing. Its not the same as that high ringing (like 6KHZ )Sound like everyone knows (cinematic tinnitus after explosion). That usual Tinnitus is quite easy to Mask. And as you know from my post I also had a "normal" Tinnitus, one stable sound (6KHZ, still always in the back of my head). With the hearing aid amplifiaction of outside sounds I had no problem with the old T...but now thats different.

      Same for similar programme like that "new" Tinnitus music APP (tinnitus pro, tinnitracks). In those you can filter out your T-Frequency from the music you want to listen. Now, finding out your frequency if you have only one stable sound is easy and it may work, but its pointless if you have so many sounds (+ those with rotational speed or some crazy wind sounds or similar). Believe me, I tried. My hearing aids are very good (widex) and with my remote I can add white noise (+ piano fractals). I used that to distract me when the T started as one sound. But when more T sounds appeared the Noiser became very annoying, because instead of distraction you from all these sounds it starts to annoy you because it is one more sound. When you're having so many sounds in youre head and some kind of ventilator or different device is starting to work in your immediate are, youre asking yourself "is that another T sound starting or just a machine on the outside?". Its ***** annyoing.

      In the first post I forgot something in the " what I tried " list.
      - Completely coming off fast food because Glutamat (monosodium glutamate) can worsen the T, so im trying to eat healthy (work in progress...)
      • Agree Agree x 1
    5. awbw8

      awbw8 Member Benefactor

      Tinnitus Since:

      I am so sorry you are having such a very, very difficult time @snow86. I can't say that my T sounds much like yours, so in that way our situations aren't really comparable.

      However, I would give the qi gong, clean eating, exercise and maybe yoga/mindfulness some time - they do all take regular practice, time and commitment to have effect. Those are the things that helped me with depression and with managing changing T sounds in a more peaceful way. The way you fuel your body makes a HUGE difference in its ability to help you manage stress and heal. I have other health conditions and once I stopped eating processed foods completely (all organic and I cook for myself), my whole life and body changed. It wont cure your T, but it may make you better able to deal with it. Maybe just try it for a month and see how you feel. If you want recipes etc. I have a whole little book of really easy ones I'd be happy to share.

      Other than that, I would try to find ways to be busy or do something you like/used to like, if possible. I know depression well, and I know it makes it hard to get any initiative to do those things at all, but finding something to focus on other than T helps.

      From what I've read, coming of ADs can be a bit of a mess. I took them for a period of time, did not like it at all, and still had a rough go tapering off of them, but all is well now. If you are going to go off of them, talk to your doctor and also be doing everything you can to be healthy and happy as you do taper off - maybe try regular yoga (or just exercise), it's shown to have an effect on neurotransmitters* that might soften the blow of coming off ADs if you and your doctor decided to go that route.

      *See here: http://abcnews.go.com/Health/Healthday/story?id=4507486

      We're all here for you, please don't give up.
      • Like Like x 4
    6. linearb

      linearb Member Hall of Fame

      East Coast USA
      Tinnitus Since:
      snow86, I just reread your original post, and I doubt if my last reply was helpful to you. I'm sorry; I am passionate on this issue when I see people continually engaging in cognitive mishaps which are pretty clearly making their misery worse than it is already.

      You have tried the "shotgun" approach; I've also been down that road.

      My best advice is to not give up hope that there may be an eventual medical breakthrough on this, but also not to put all your hopes on that or spend much time thinking about it. As @awbw8 said, mindfulness stuff takes a lot of time and effort to see any return from. It's also not likely to literally change the nature of your tinnitus (I'm personally still of the opinion that it might do so in some small way over a very long period of time, but that's neither here nor there.)
    7. Tweaker

      Tweaker Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Noise exposure

      I also have multiple sounds which have worsened over the past 5 years of having chronic T. I also think it may be the ADs and sleeping tabs etc that have all made it worse. I am trying to quit all meds but my brain doesn't like it when I stop these meds. I'm on low dose mirtazapine and have been cutting down but after 4 days of stopping my T is even worse and sleep is so difficult. I take zopiclone on and off but again a low dose. Hard to concentrate at work. Its like a catch 22. You need the meds to get some sleep and cope but they could be making it all worse and then stopping seems to aggravate everything too. I may just ride it through and hope my brain settles down over time or I may just draw out the stopping process more gradually and see if things improve. At mo, T is just so crazy loud and unmaskable. It's like an electrical storm inside my head too.
      The only things to have helped me are a support group and mindfulness meditation. But it so hard to cope at times, I know. Stress makes it worse too. I hope yours settles down and mine too. Just have to live one day at a time. Who knows what tomorrow may bring. There is always a chance it will improve. I just keep telling myself that I must have reached max volume by now and that it can't go on getting worse.
      • Agree Agree x 1

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