Somatosensory Tinnitus Anyone?

Discussion in 'Support' started by untamed wolf, Feb 9, 2016.

tinnitus forum
    1. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      Hello again!

      I Just found this form of tinnitus and it might be the solution, but I don't know... I have no hearing loss but a huge problem with the right side of my body also the side where my tinnitus is. my spine is misaligned or something like that. My jaw is misaligned and every single muscles are irritated. So my question is, could it be? I am currently seeing a physiotherapist but should I mention this? I just really want to find something and all of the symptoms fits. My sound changes when i move or jawn and my teeth arch feels narrow, my jaw pops and my ear on the right side feels clogged when I had it tested they said it was not clogged...

      Could it maybe help? I really want something
       
    2. Nick Pyzik
      Depressed

      Nick Pyzik Member

      Tinnitus Since:
      6/23/15
      Cause of Tinnitus:
      Listening to in-ear headphones & playing in a band
      Do you listen to music through headphones a lot?
       
    3. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Nick Pyzik I have not used headphones in years and I never turn the volume up to more than two three dots. That is why I am so frustrated plus I have over average hearing.
       
    4. Nick Pyzik
      Depressed

      Nick Pyzik Member

      Tinnitus Since:
      6/23/15
      Cause of Tinnitus:
      Listening to in-ear headphones & playing in a band
      That is odd. So that takes out the factor of noise-induced tinnitus. Would you say you have trouble concentrating, sleeping, emotional issues with it? Or are your problems just more anxiety based and you're afraid of having to hear this noise for the rest of your life?
       
    5. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Nick Pyzik I have some physical issues with my back since I am tall and I guess some emotionals. Yes I am very afraid to hear it for the rest of my life defiently. I have never been to anxious but since I got T I have been more.
       
    6. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Yes, somatosensory tinnitus here too. The solution is correcting all the problems of the body that you have on the right side, and then your T will go away as well. Sounds like your TMJD (temporo-mandibular joint disorder) if your jaw is popping. The clogging sensation is from the TMJD, from the swelling of that area that affects the middle ear too.

      See if this article clarifies you in this matter:
      http://yts.se/english/treatment.htm
      and the part about the somatic T in this article:
      http://www.randombio.com/tinnitus.html

      Of course, you need to research on the Internet for more information about the TMJD induced T.
      Good luck in your recovery! There is a lot of work ahead of you, but at least you have one silent side to sleep on, and you know what you have to do to restore your health.
       
    7. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Dana wauw so nice to actually meet someone with that kind of tinnitus I was not sure anyone had heard about it. I am so hoping the corretions to my body will help my T and give me some strenght back to my body. The TMJD sounds right especially with the clogged feeling and popping. Did your T dissapeat completly and if it did, how long did it take?
       
    8. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      most tinnitus is somatosensory, because sensory data starts to cross over into the audio system through the DCN following some (potentially very slight) loss of audio data. So, unfortunately, even if tense muscles directly impact your tinnitus, just fixing the muscle tension isn't really likely to completely get rid of the tinnitus.

      I've posted this here a few times, but it's still relevant:
      "The Neural Bases and Neuroengineering of...
       
      • Helpful Helpful x 1
    9. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @linearb do you know if you can test if you have a slight hearing loss because all I have been hearing from my ENT is I have very good hearing on both ears. Should I do some more tests? Or what should i try?
       
    10. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      You need a high frequency test; my hearing looks great on a normal audiogram up to 8khz with only a very slight discrepancy between ears; if I get tested up to 16khz, then you can see a clear difference, with worse hearing on the left from 12-14khz, which is also where most of my tinnitus is.

      A tinnitus specialist clinic can probably do this testing; normal hearing tests do not cover it.
       
    11. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      I have other types of T at the same time. (Yes, it is possible) My TMJD is the smallest of my problems and I didn't even have time to get to it and address it.
      All I did regarding the contractures in the muscles that give T was to have Botox in my masseter muscles on both sides, which resolved the problem of having an extra T sound when I clench my teeth. I haven't got myself a mouth guard for my TMJD induced T, although I was offered. I will have to do that.
      Beware that stress increases the somatic T, it worsens the TMJD symptoms. Avoiding stress and relaxing is very important.
      I take Clonazepam as a muscle relaxer and as an anti-seizure drug, but I heard that it gives problems on the long run. I had no choice, it was the only way to survive those almost 8 years of T. Clonazepam helps with the symptoms until it weares off, it doesn't address the cause of the problem.
      Physiotherapy, exercises, relaxation!
       
    12. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @linearb I will try that hearing test after my appointments are up with the physiotherapist. That T you are describing where the muscles getting relaxed will not kill the T how do you get that? Noise or?

      @Dana how does other times of T sounds like? Is it multiple noises due to multiples things?
       
    13. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      I am afraid so, but do not worry about it, this is my case.
      Today I had T at suicidal level, I cried a lot, worried about my future. On 28 of December 2015, for example, I had a day of zero or a 1/10 level T. So if you take care of yourself it can lower a lot, or go away, but it may return should stress returns, or your trigger point in the muscles get worse from bad posture.
      Be very careful at your posture!
       
    14. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Dana I am so sorry to hear that. I worry a lot too... My posture is so bad I do not even think I have a muscle in my back - it is all due to lack of confidence really. My physiotherapist says it might be my spine because it is shifted and has put some pressure on my neck and my ear, but he cannot promise it will go away... It can be so hard not knowing
       
    15. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      "most tinnitus is somatosensory, because sensory data starts to cross over into the audio system through the DCN following some (potentially very slight) loss of audio data. So, unfortunately, even if tense muscles directly impact your tinnitus, just fixing the muscle tension isn't really likely to completely get rid of the tinnitus'

      I disagree, but I have different opinions with linearb regarding almost every issue possible, so that's just an indicator of normalcy.
      I have heard of cases (from serious medical studies) of ipsilateral (on the same side with the problem of the body) somatic T resolved completely, without any treatment even, but that took about a year.
       
    16. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Dana nice knowing I maybe have a little hope especially since I have treatmemt. I am going to my physiotherapist tomorrow and last time I was so filled with hope when I left. I so hope you are right it is just frustrating that there is a possibility my problems will resolve and not my T
       
    17. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      most tinnitus is somatosensory, because sensory data starts to cross over into the audio system through the DCN following some (potentially very slight) loss of audio data. So, unfortunately, even if tense muscles directly impact your tinnitus, just fixing the muscle tension isn't really likely to completely get rid of the tinnitus'

      I said that I disagree, in the sense that somatosensory data can cross over into the auditory system at the DCN level not only following some loss of hearing, but also because of too strong somatosensory signals (too much contraction in the muscles) or other factors.
      I speak only based on serious medical articles.
      The fact that various medical articles/sources are contradictory to each other is another problem that T sufferers have to deal with, unfortunately.
       
    18. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      For a while I thought that my T my be attributable to neuromuscular inflammation of some kind. I did a lot of research on "Somatosensory Pulsatile Tinnitus" in particular. If you don't mind me asking, what in particular makes you believe your T is caused by muscular interference of the DCN? Any neck or jaw injuries in the past? What does your T sound like?

      Sorry for all the questions, just interested to hear a new perspective on this. I still wonder how much of my T could be attributed to inflammation of some kind simply because of how somatic my T was for a while (moving anything from my lips to my toes changed my T) and the fact that I started having jaw pain and issues for the first time in my life at about the same time of T onset....
       
    19. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @SteveSkis92 I don't mind the questions it is nice to describe how it feels and learn more. I have just recently discovered this form of T via a pdf article. Since I have no hearing loss and the ENT says my ears look super I refused to Think it was noise that did it I take care of my ears. This article has a checklist where I could say yes to 3/4 of it. My jaw problems also started with T and they have to be Linked. Also all of my muscles are irritated behind my ear included.
      Sorry for the long reply hope it was worth reading. I can link to the article if you want?
       
    20. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      May not be hugely relevant to you, but my tinnitus was caused by systemic inflammation, rather than noise induced. I have some somatosensory tinnitus, but this part has hugely reduced in its severity. It used to be appalling - in fact, it was so bad that I could actually make myself completely deaf at certain frequencies by clenching my jaw.

      I still have tinnitus and like many others, I have good and bad days, but since removing the source of the inflammation, the average is significantly better and the somatosensory tinnitus no longer features heavily as a condition - that does not mean that I am fine, I still have bad days and can dissolve into tears on those days. It is incredible how debilitating it is. I have been through some very tough times in my life and coped without complaint, but this is something that I have not been able to fully take control of. I know in relative terms 19 months isn't that long to have tinnitus, but it is long enough.

      At the start, for months, I would wake up every morning with my ear screaming - and I mean screaming. Now, some days I wake up and it is silent - and it is lovely when it is - but as soon as I start to move around and particularly if I yawn, it all kicks off. Oddly, it is not the movement of the jaw, as this has no effect. It only occurs as a result of the process that happens within the muscles in the ear when yawning - tightening of the tensor tympani being the most probable.

      I think back to the start when it was always loud and very occasionally, I would get a few minutes (maybe 5) of silence, once or twice a month. I would just stop what I was doing and just sit, enjoying it for those brief moments, before it would all start again. Now however, I take for granted the fact that I will average more than 20 minutes silence each and every day. In terms of quantity of silence, this is a 30-40 fold improvement. Perhaps in another 8 months, this will be a similar improvement again, meaning that I will hear more silence than tinnitus!?!?

      Like Dana, I have multiple types of tinnitus, most of which cycle throughout the day. My audiologist has a list of all the sounds I have heard and I currently hold the record number she has ever encountered - not a record I am proud of. Like you though, mine is not noise induced and I have clean hearing with less than 10 dB of loss all the way to 8 kHz and then good hearing all the way to 14.5 kHz. There is the odd drop hear and there, but even then it is only around 20dB which is considered normal and is no worse than would be expected for someone of my age - none of this accounts for hidden hearing loss though.

      I don't believe in the idea that this is it. I'm not saying it will completely go, but whilst it generally continues to improve, there remains hope and you should remain hopeful as well.
       
      • Helpful Helpful x 1
    21. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Owen thanks for sharing! Have you considered or maybe been to a physiotherapist ? My sounds changes with a lot of things especially yawns too. Do you have any jaw problems? Or back? Because that might be the course of mine how did your T feel like? Clogged ear?
      Sorry for all the questions I am just really motivated to make it stop
       
    22. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      As part of the inflammation, I was suffering from a lot of problems, including the fit my jaw - the inflammation was such, that on some days I couldn't close my jaw properly, as all the teeth were out of line. I spoke to my dentist about it, but it was not considered a dental issue, nor TMJD. The inflammation in the soft tissue was pushing my jaw out of position. This took about 3-4 months to settle following the removal of the source of inflammation.

      One of the many things that makes it strange though as that it can be silent and the act of yawning creates strange mechanical noises in my ear and following this and relaxation of the muscles to normal, following the yawn, the tinnitus sounds persist. Equally odd is that if I am lying down and I yawn, the noise that persists is a ring, if I am upright and I yawn, the sound is more like Morse code. This, to me indicates that there is an issue associated with pressure being applied somewhere. Occasionally though, I yawn and it remains silent - but this is pretty rare. Equally though, none of the mechanical sounds appear before it on these occasions.

      I have problems with the muscles in my shoulders, but I have had those for more than 15 years and they come and go. There does not appear to be a connection between my shoulders being tight and the tinnitus. For me, the question really is "Once the source of inflammation has fully resolved, will the tinnitus go or not?" I am told and I regard the fact that it comes and goes as a positive thing, indicating that my auditory system is at least capable of hearing normally.

      I definitely have problems with clogging in the ear. Not just a sensation, but a tangible, measurable, mechanical problem. I have drainage down my throat (post nasal drip), which I never used to have and problems with squelching noises in the ear due to Eustachian tube dysfunction.
       
      • Winner Winner x 1
    23. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Owen I have the excact same problem with my jaw! With the feeling misaligned but only in the weekends. How did you get the inflamation? Did it just occure or was it a sickness? How did you even find out is was that, my ENT says my ears look perfect so i would never suspect inflamation. Since I only have one tinnitus do you think it will go away? I know you are not a doctor but might be nice with a opinion
       
    24. Dana
      Chicken

      Dana Member Benefactor

      Tinnitus Since:
      09/2008
      Cause of Tinnitus:
      not known, too many possible causes
      Please do that. The more articles about that, the better.
       
    25. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
    26. Owen
      Disappointed

      Owen Member

      Tinnitus Since:
      05/2014
      Cause of Tinnitus:
      Unclear. Inflammatory allergic reaction/AIED
      Sorry if this gets a bit long, but it isn't easy to answer in a short sentence.

      Mine was a rare allergic reaction to Levothyroxine. I had all manner of symptoms from it before tinnitus developed and was in and out of hospital for months for other inflammatory conditions, ranging from skin rashes at the mild end, through to appalling allergic reactions that would make my nose stream for hours, to facial, throat and jaw pain and even the lining of my mouth pealing away leaving open sores - there were more, but you get the idea. I was prodded and probed for everything and I kept asking if it could be the Levothyroxine, but was repeatedly told no, even though all of these symptoms started around 1 month after starting treatment.

      Eventually, I told the doctors that I believed it to be the Levothyroxine and against their judgment, went for private treatment to receive something called NDT (it is thyroid hormones that has been extracted from pigs, rather than synthetic) - it is not licensed in the UK. The endocrinologist I saw was aware of many of the issues that some people suffer, although he acknowledged that the severity of my problems was at the extreme end of the scale.

      24 hours after I changed drug, for the first 3 days, my hearing was completely normal, my skin started to feel less sore and I thought "wow, why didn't I just stop taking this crap sooner?", but then, all hell broke loose and I had screaming, jet engine noises etc and I thought I was going to lose my hearing - I was terrified.

      Out of fear, after 3 more days of screaming in my head, I took a Levothyroxine tablet to see what happened and within 24 hours, the tinnitus was back to its previous level and I took it for a couple more days, but other issues returned. I tried this cycle several times, until eventually, I could see such a repeatable link between the two. I went to see an ENT about this and was given absolutely nothing and despite the evidence, told it was unrelated. Realising that there was no hope from the medical profession, I just went for it on my own. 3 months of absolute misery followed. I stopped sleeping and instead used to pass out once every 3-4 days through exhaustion.

      Over time, this started to improve - albeit slowly - until eventually I find myself where I am today. I still have hearing issues and flare ups and have moments of weakness where I find myself really depressed and low about it, but no-where near where I used to be.

      I no longer have any of the other inflammatory conditions outside of my nose and sinuses, they have all gone and after suffering with them for the 2 years solidly that I was taking Levothyroxine, there is a very clear link. Some doctors I have seen accept it, but others still refute the connection - amazing when I was suffering from 15, known, albeit rare, side effects (something that I was not aware of at the time).

      Link if you're at all interested in the side effects of Levothyroxine:

      http://www.webmd.com/drugs/2/drug-1433/levothyroxine-oral/details/list-sideeffects

      I still have a lot of congestion around my head as a result of the severe allergies and get flare ups in m sinuses and nasal passages which in turn result in worsening of tinnitus whilst they are present. My audiologist agrees that it is an unusual case and may have even offered some useful information about tinnitus in general if regular scans and tests had been taken from the start to try and understand the processes occurring in its development and healing. Although she considers it too late for much , she has written to and recommended that the local eNT department shows a bit more interest, so I have another appointment in 4 weeks (it should have been 2 weeks but they moved it - you couldn't make this stuff up).

      Has an ENT had a look up your nose or taken any sort of X-rays or scans? If not, they can honestly tell almost nothing by looking in your ears. There are so many problems linked with hearing that are utterly invisible by looking in the ear.

      Unless through noise induced hearing loss, hearing tests are useless for tinnitus and even then, don't always reveal very much - loads of people with apparently good hearing have tinnitus.
      Unless a middle ear infection is present, or lots of fluid build up, looking in the ears is useless. There are lots of middle ear problems that don't show up from looking in the ear.

      I can of course give you no indication as to whether or not it will go, but it might. I know you are in the early stages of it and at the moment and you're looking from reassurance from people further down the road, so hopefully the amount of information I have shared with you shows that it can improve. I promise that I am not embellishing how bad mine was at the start, it really was unbelievably loud, but now, when it goes for a while, it genuinely is gone, it isn't that background noises are masking it. I remain hopeful that I will be someone writing my own success story on here in a few months time. It took over a year of taking Levothyroxine for tinnitus to develop, so at the very least I believe it will take a full year after stopping for it to resolve. That take me to mid-June this year. Even then though, the total time I took it for was 2 years and 2 months, so it would not be wholly unreasonable for it to take that long for everything to return to normal.

      One last thing to share with you over my case that I have not made clear is that some of the noises I hear are concentrated seemingly in the ear, whilst others appear to be somewhere centrally in my head. At ties, neither are present and at others both, or one or the other. I believe the central ones to relate to a slightly different mechanism from Levothyroxine than those in the ear. The ear tinnitus first appeared in my left ear and it was there for 4 months before transitioning to my right ear. Other than the odd tinkle that appears now and again, the left ear has remained free from tinnitus for a year now. What caused the transition is anyone's guess, but if it can go from one ear, surely it can go from the other.

      Finally - and I promise this is it, I must admit, a lot of the advice I have read doesn't really apply to me. Food stuffs make no difference to me. I can eat and drink what I like and it makes no difference - with the exception of alcohol, but then alcohol does dry out the nasal membranes and I feel bunged up and whenever this happens the ringing in my ear is worse so it isn't surprising that it has some effect on me. Being stressed or tired doesn't make mine worse - in fact, I have been at my absolute wits end about it and wanted to scream and suddenly, it just fades away to nothing. What I would say though, is eat well and look after yourself. Not because it is going to have any profound affect on improving your hearing, but it will put you in a better position to cope with it when it is bothering you. For me, the emotional response to tinnitus can be worse than the tinnitus itself.

      Again, apologies that it is such a long reply, but you did ask ;).
       
    27. untamed wolf
      Confused

      untamed wolf Member

      Tinnitus Since:
      10/2015
      @Owen Wauw thanks really so amazing to read such detailed experience! I have not been taking anything, I even stay clear of aspirins. Your ENT story is actually very close to mine. My ENT have not been taking any x-rays and just looked up my nose really quick as a procedure. I had a cold and sinus problems some weeks before I got T but no one have seemed to care so far. I just visited my physiotherapist today and he keeps finding tense muscles and suspects i react way too much in my somatosensory system under stress and since i got it after i just started my crazy after summer schedule up the time I got T I am hopeful. Should I go back to the ENT and demand them to look at my middle ear, maybe middle ear problems can be fixed?
      I have discovered after I went to the physiotherapist for the first time, so it might be something he did, is that i have a semideep low radio noise that tend to go away when I put my fingers in my ears and a high pulsating sound that changes in volume and location. depending on how I move this will change around and sometimes one of the sounds may stop. It is all really odd to be honest it feels like my sound is always changing but never stops - at least so far.
       

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