New to the forum, hello!

Discussion in 'Introduce Yourself' started by MissionForTheCure, Jun 24, 2013.

tinnitus forum
    1. MissionForTheCure
      Woot

      MissionForTheCure Member

      Tinnitus Since:
      06/2009
      Hi All,

      I have just joined the forum so thought I would take some time to introduce myself and explain my story here.

      So I have generally been a relatively healthy person all my life, loved my sports and my friends. I studied Economics at University at the beginning of my 2nd year, got really involved in DJing as a hobby outside of studying, it was such a nice relief for me to escape the world and be creative through music, normally mixing anything from commercial club music to trance (my passion). I got very heavily involved and after having an amazing night out, one night made it my mission to get a DJ set in this club, which I did achieve about 12 months later through lots of practice and dedication! My problem was the love of playing my music LOUD, and looking back I pumped it hard, a lot of the time and was constantly exposed to noisy situations. Unfortunately this led me to develop tinnitus very quickly because I was simply unaware of the health risks associated to loud noise..

      Initially when I got tinnitus, I was very scared and had countless sleepless nights. I started wearing earplugs when I went out to clubs, and in general the "hissing" sound was bearable, but annoying. After about a year, I had gotten used to this hissing, and whilst annoying I was doing just fine. Then, I got a job, which added a great deal of stress to my life. There have been a couple of times in the last 2 years where I have gone out to a bar for a short period of time without earplugs, and it has made the tinnitus so much worse, permantly. It's now at a point (mostly in my right ear) where the high pitched hiss is so loud and intrusive that I find it incredibly hard to concentrate and have been suffering with Anxiety and Depression for the best part of a year, which was really triggered when I developed eye floaters in my right eye, another annoying conditions that gets in the way of day to day activities. I just can't seem to go a day without thinking about it significantly because it is just so loud, intrusive and seemingly to get progressively worse every day. With the anxiety, I have had terrible dizziness, exhaustion and tension in my head.

      I've gone through about 10 sessions of CBT, which has really helped with the anxiety symptoms, and feeling mostly back to normal with respect to the anxiety, but still feeling down. Throughout this time I have continued going to work and ploughing through these incredibly difficult days because I refuse to give up, and just try to make it to the next weekend, taking each day at a time! I often avoid social situations now, whereas before I used to love going to, and really am separating myself from any sort of social scene. All in all, I would recommend CBT! However, I was encouraged to try and push myself to go to bars, restaurants without wearing earplugs, but I know doing this will make my life that much harder, because the T will get worse!

      I have also completed a course of Acupuncture (13 sessions). This was very good for relaxation, and allowing my mind to drift (especially during the massage :)). I really felt I was making good progress about half way through, but now I have finished the tinnitus is ever louder! This was only really good as some chill out time.

      I am very determined to beat this, but am struggling so much in my life right now to see any form of light at the end of the tunnel as this condition just seems to persist in getting progressively worse. The only masking I can achieve, is in the shower, which is for about 5 minutes in the day. White noise seems to aggravate my tinnitus, so if I play white noise over the top of it, the tinnitus seems to come back with an even stronger, higher pitched hiss, it's like my brain refuses to let go!

      I'm sorry for the long post, and I don't mean to appear like I am the only one going through this, I know there are many people suffering just as bad, if not worse than I am, I am just so upset about how 1 fun year has potentially ruined my entire life. The thoughts I often have is, "if it's this bad now, what's it going to be like in 10 years time" - this I just cannot comprehend.

      I have mostly bad days now and am desperate for anything that might help and am determined to get better. When I say cure, I mean my tinnitus is at a point where it does not affect me or my daily decisions in any way, complete silence is a dream. This is my personal mission.

      What I have tried/trying:
      CBT - would recommend for helping with anxiety/depression, it hasn't helped so far with reducing "annoyance" of tinnitus
      Acupuncture - Would recommend for relaxation and reducing stress. Unfortunately hasn't directly helped with the tinnitus.
      Gingko Biloba - started taking 2 of these per day and will track progress over next couple of months
      Diet - I am trying to eat a very nutritious diet, lots of "super foods", veggies etc... I aim to keep this going for as long as it takes.
      - Had an MRI scan, everything fine (through an ENT specialist)
      - Had a blood test, everything fine, Blood Pressure - ideal for my age

      Things I will try:
      - Vitamin Supplements
      - Improving exercise (although this always makes my T worse)
      - anything else that can be recommended?!

      I love my girlfriend with all my heart, I have supportive friends and am lucky to have my parents, but I just cannot open up truly to how I feel, as I'm worried there's only so much support they can give :(. I'm just wondering who out there also has this incredibly high screeching tinnitus and what options there are to help alleviate the sound, even if it is a little?

      Thank you for taking the time to read this and I very much look forward to your thoughts :). I want to work through this with all other tinnitus sufferers and I am hoping something works, it just has to!
       
    2. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Welcome to the forum!

      Interesting that you too have eye floaters. How old are you now?

      There are several people here with tinnitus and floaters. But I guess both are pretty common conditions, so it's not that unlikely to have both.

      Did the CBT therapist suggest you go to bars and loud places without ear plugs/hearing protection? Did I read that right? What the heck!

      Don't bottle up your feelings. Share your everything with your girlfriend. I'm sure she loves you even more for it, trusting her with your painful experience.

      I don't know what to recommend regarding improving your T. There's just so limited options available to us, and it seems you've tried a lot.

      I hope you'll find our community to increase your wealth of information regarding tinnitus and that you're able to meet new people in similar situations.

      We welcome you!
       
    3. MissionForTheCure
      Woot

      MissionForTheCure Member

      Tinnitus Since:
      06/2009
      Hi Markku,

      Thanks for the welcome! I am in my mid twenties, so this is currently a scary time for me, with potentially a lot of time ahead of me!

      My CBT therapist did indeed encourage me to avoid wearing earplugs where possible (not necessarily in clubs - I haven't been for over 1.5 years now), but she did encourage me to try and stop wearing them in restaurants etc... I think this was more to do with the fear response I assume when going into pretty much any loud place and not being protected in circumstances that most people find completely normal. The frustrating part of it is that I think she is (mostly right). Conquering your fears helps remove them. The problem with tinnitus and anxiety, is try to conquer the anxiety response, will ultimately make the tinnitus worse, hence the classic vicious spiral!

      I'm considering Acoustic CR Neuromodulation, recommended by the ENT specialist, but have heard mixed reviews and £4.5k + check ups are not cheap. Plus i'v read it may not work with my type of tinnitus. :(

      I wish there was some more hope out there, I must have read every board on the web!

      Hoping Auris Medical or Micro Transponder come up trumps with their efforts to help us all!
       
    4. Sven
      Procrastinating

      Sven Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      06/1999
      Cause of Tinnitus:
      Acoustic trauma
      Hello!

      Seems you're about the same age I was when I got mine. I was 26 and it was after a rock concert. I can't of course say how loud/bad yours is, but hang in there, you'll start coping better with it, eventually!

      Also, not to ruin your hopes, but save your money and skip the Gingko. I think it only helps with other forms of T. not T. caused by noise. I tried it myself back then.
       
    5. Piper
      Loved

      Piper Member

      Tinnitus Since:
      Feb 2013
      I know
      exactly what you mean , its driving me nuts too,I have tried everything , today I am going to try antidepressants, there is no escape from it, I wish it was a terrible pain instead so I could at least take pain killers. I wish you well
       
    6. James White
      Anime

      James White Member Benefactor

      Location:
      Toulouse, France
      Tinnitus Since:
      April 2013
      Cause of Tinnitus:
      Maybe loud music. Not sure.
      Hey Mission,

      I also have tinnitus from playing in a band and years of loud music, parties and concerts. I'm only 29.

      I don't think ACRN is interesting today because it costs too much in my opinion.

      AurisMedical may release their drug in a few years if it passes phase3 (which ends in Dec 2014). It's only for tinnitus < 3 months but still it may help some people even if they had it for a longer time (i hope so).

      I think MicroTransponder would be a little bit intrusive if your tinnitus is not "disabling", meaning the incapacity to lead a quasi normal life (going to work, etc).

      Still, Autifony started its phase1 this month and targets chronic tinnitus, have you read about it ? It would be a few years too before its released (5 years minimum).
       
    7. MissionForTheCure
      Woot

      MissionForTheCure Member

      Tinnitus Since:
      06/2009
      Hi Guys, thanks for your responses and messages! This is the frustrating thing about tinnitus, today I have mostly had a good day and it just baffles me as to how one day it can be so much more noticeable, then the next day not that intrusive. I highly doubt the Gingko is having an affect, but even if it provides me placebo effect, I will certainly take that for a few days! Again trying to keep well nourished diet, eating lots of salad and fruit (I think this realistically has to help as it gives your body the right nutrients to feel as good as possible.) Most noticeably, I have been busy at work, and I have had periods where my mind is taken off of it entirely, what is frustrating is how your mind forces you to think back onto it!!

      Sven - thank you for your comments, I want to try Gingko just for my own piece of mind, even if it has the tiniest (psychological) effect, I will take that as a positive move forward :)

      Piper - I have to agree, I find tinnitus is actually akin to pain, just in a different form. From my CBT I have learnt that it is possible to mindfully focus away from the source of pain/tinnitus and if you can give yourself just 10 minutes a day where you practice this, it may help you! There is no question this is a difficult skill to master and fully grasp as it is essentially a form of meditation, but a very useful tool, especially for anxiety. I wish you well too my friend!

      James - Thank you for your comments on new future treatments, Autifony is not a company I have heard of, so will do a bit of research into those guys. I am a keen investor also, so if a company does come up with something that works, I want to be on board!! lol.. I agree ACRN is very expensive, I believe there are trials testing the efficacy in the UK and may soon be available on the NHS (free!), so I am more inclined to wait for a bit on this. I am also sceptical at how effective it will be in treating the type of tinnitus I have, a high screeched hissing sound! Has anyone tried or had success with AudioNotch? The major problem I see with this is it is not done under any professional guidance, so do not want to waste money and potentially make it worse going down this route.

      Have you guys every had ear wax removed/any success from this?? I don't mean to clutch at straws, but on a ski trip last year, my T sounded louder/more high pitched than normal. After putting my earplugs in a clump of wax came out of the right ear and the T definitely reduced, it's the first time since getting T that I had the honest feeling it had got better! I have always suffered from relatively waxy ears, so wondering if this is an avenue worth exploring or if there are any over the counter ear wax removal drops that could be recommended?

      Thanks again,
      Mission
       
    8. Alfredo

      Alfredo Member

      Tinnitus Since:
      7/2011
      Hi, I'm interested in CBT methods. In my town there's no CBT specialist. Could you tell me a little bit about the methods that you used for reliving anxiety?
       
    9. MissionForTheCure
      Woot

      MissionForTheCure Member

      Tinnitus Since:
      06/2009
      Hi Alfredo,

      So just to give a bit of background, I was suffering from a lot of physical symptoms of anxiety, such as racing heart rate (for seemingly no reasons), heart palpitations, dizziness, extreme triedness and tension across my head, occassionally pins and needles sensations - pretty nasty all in all!

      So in my CBT, we dug deep into the specific route cause of what is causing the anxiety, which I thought was obviously my tinnitus. Where in fact the problem actually comes from, is your thoughts (which I know may sound bizarre.) Therefore a lot of the techniques used are to help you manage your thoughts more effectively.

      So firstly, you are tought to be and live in the present. this involves stop predicting how you will feel in the future and stop "what if" thoughts, because at the end of the day they are just thoughts and there is only one moment, which is the one you are in now. The mind is very powerful, and can ultimately cause you too feel very unwell (something I couldn't quite see at first, but definitely see now).

      Secondly, you need to try and face your fears, set yourself targets and try and hit them. Whether this is slowly exposing yourself to noisier places with ear protection until you feel less anxioous (utlimately you will need to determine what is the route cause of your anxiety - this is most likely tinnitus, but ultimately your thoughts can affect how you feel). So for me, I was encouraged to stop being so conservative and try to push myself. Now I am not silly, and will always wear earplugs when I feel uncoffortable, bu tthe idea is that you face your fears (safely).

      Thirdly, I wanted some techniques to help me when I was feeling really bad, with all of the physical symptoms, as you feel there is no way apart from sleep, some tip for this:
      - Practice a mindfulness guidance twice a day (morning and evening) for 10-15 mins each time. this involves listening to someone guid you through a focus exercise of different parts of the body, the goal being to completely focus on these body parts, and mindfully notice and let go of any other thoughts.
      - Breathing exercise - take deep breathes into the stomach, rather than breathing via your chest. Best way to do this is your belly sticks out when your doing it correctly.
      - Tension Exercises - tense certain muscles and then release and try and let the anxiety go with it.

      Hope this helps!

      Mission
       
    10. Sven
      Procrastinating

      Sven Member Benefactor

      Location:
      Sweden
      Tinnitus Since:
      06/1999
      Cause of Tinnitus:
      Acoustic trauma
      I've had wax removed once and the only way it helped was that I started picking up other sounds that the wax had blocked. When all quiet everything was the same, unfortunately. Amazing experience, by the way. (and OMG how much wax there was...) :)

      I have quite crooked eardrums so I think it got stuck there after too much use of custom made earplugs. I must have pushed it into the ear. In Sweden there's a brand called "Revaxör" that is availablie over the counter. I have no idea what the name is in other countries.
       
    11. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      1 ml Revaxör innehåller: Allantoin 3 mg, etoxylerat lanolin, polysorbat 80, polysorbat 60, sorbitanpolymer, fruktossirap, polyoxyetylenstearyleter, polyoxyetylenoleyleter, flytande lanolin, isopropylmyristat, minkolja, fenetylalkohol, cetylalkohol, antioxidationsmedel butylhydroxytoluen 1 mg, konserveringsmedel sorbinsyra 2 mg och bensetonklorid 1 mg, vatten.

      Seems it's "Remo-Wax" in Finland.

      http://www.itsehoitoapteekki.fi/Tuotteet1/muut-tuotteet/Remo-Wax/

      "Koostumus: Allantoin. 3 mg, Benzethon. chlorid. 1 mg, Butylhydroxytoluen. 1 mg, Phenethanol. 5 mg, Acid. sorb. 2 mg, Glucos. liquid., Lanolin. ol., Mink oil., Constit. et emulg., Aq. steril. ad 1 ml."

      It's good stuff. Applying it once in a while helps make sure I don't suffer from much wax problems. There are other products like this too, but not identical, and I think this one is seen as most effective.
       
    12. Sherri786
      Dreaming

      Sherri786 Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      03/2013
      Thank you Mission, for all the info. Please read my thread ' new here ' for more info !
       
    13. Alfredo

      Alfredo Member

      Tinnitus Since:
      7/2011
      Thanks
       

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