Somatosensory Pulsatile Tinnitus Syndrome

Discussion in 'Support' started by Worker, May 13, 2015.

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    1. Worker

      Worker Member

      Location:
      England
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      lots going on at the time
      Has anyone ever been diagnosed with this syndrome and been treated sucessfully. Robert Levine has written research papers on this syndrome. Also has anyone ever been to his clinic in Tel Avi in Israel?
       
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    2. Kaelon
      Wishful

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      Hi @Worker,

      I just posted about this a bit in the other thread in this forum, and bottom line, I believe that this syndrome describes the mechanism of neuromuscular inflammation commonly attributed to neck, jaw, upper back, and head muscle tensions and spasms -- as these are probably leading to the compression of blood vessels at play. The treatments that Levine prescribes - electroacupuncture, for instance - have little grounding in Western medical science, but may be stimulating the muscles to be less reactive and creating the perceived improvements. None of the treatments that Dr. Levine has written about appear to have "cured" people of this "syndrome" he describes.

      However, there has been a lot of scholarship done about people who suffer from this syndrome's symptoms (especially the cardiac-rhythmic oscillating high-pitched tinnitus) having been cured through long-term physical therapy addressing the underlying problems. Neuromuscular inflammation that causes compression of blood vessels is usually a long-term, chronic problem that reaches a critical breaking point, and this is not something that can be easily cured. Surgeries that address TMJ disorders, for example, rarely actually address tinnitus caused by TMJ spasms or myofacial pain. Instead, treatments of 6-18 months seem to be the norm for substantially reducing the perception and occurrence of tinnitus in patients who have neuromuscular inflammatory conditions like this.

      There appear to be common components associated with what is causing this:
      • Chronic poor posture, head, neck, shoulder, or jaw issues.

      • Dental work (extractions, root canals, etc.) that initiate an onset of the symptoms within 18-24 months following the procedure - sometimes sooner.

      • Cardiac health issues that may be aggravating or amplifying the perception of a pre-existing neuromuscular inflammatory state.
      I would certainly be very interested in more scholarship or reporting on Dr. Levine's work and whether he has any diagnostic approaches that can definitively prove his theory which, if you read his NIH NLM publications, seem to be built around a lot of unproven assumptions and highly speculative conditions (that he proves principally by trying to disqualify the more common alternatives).
       
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    3. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I've been reading the research, trying to absorb it, it seems that they did have some success with auricular electro acupuncture, at least a decrease in sound. They list the 2 primary causes as 1) failure of the somatosensory-auditory CNS interactions to suppress cardiac somatosounds or 2) cardiac synchronous somatosensory activation of the central auditory pathway.

      I'm trying to get in touch with Dr. Jennifer Melcher in Boston who co-authored the research. If not I'll try to contact Dr. Levine.

      Mine has improved about 70% from initial onset in December, but has leveled off recently. I still hear pulsating everyday and can start and stop it with head movements.
       
    4. Worker

      Worker Member

      Location:
      England
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      lots going on at the time
      There is a good report on tia.sagepub.com

      Somatosensory pulsatile tinnitus syndrome. I have never had any pain in my neck or jaw before and now. I thought that it could be compression of blood vessels. I beleive my started with overflexing my neck over a sink. I have no headaches, dizziness, facial numbness, fulness in the ears. Just 24/7 pulsations changing when I move my neck and jaw and I can move the pulsations from one ear to the other.
       
    5. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
    6. Worker

      Worker Member

      Location:
      England
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      lots going on at the time
      Yes he sent me this link as well. What are your thoughts?
       
    7. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      It's nice to know its there and they seemed to have good success. I think we are lucky to at least have a chance of making go away or get better. I want to know if there are any risks and talk to someone who does it.

      I keep looking around for more info about it, but I'm going to wait and see a little longer since I've seen improvement. A new thing my T is doing is my left (sometimes right) ear will ring for a second or two if I bite down on something hard, like hard candy. It never ends.

      What do you think?
       
    8. ruben ruiz

      ruben ruiz Member

      Location:
      Tucson, AZ
      Tinnitus Since:
      2012
      Cause of Tinnitus:
      I believe it was meds and stress
       
    9. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I don't have any symptoms like that, if all of your symptoms started at the same time then it may be some underlying condition waiting to be found. Tinnitus is just a symptom, it wouldn't cause any of those.

      Have you seen a doctor? I would start with a regular doctor.

      I'm not sure about the secondary neuropathy, most tinnitus is thought to be some type of mal-adaptive neurological change in the brain due to decreased input from a damaged cochlea.

      Pulsatile tinnitus is a whole different category, normally caused by a vascular abnormality in a vein or artery, rarely serious. Somatic pulsatile tinnitus is a sub-type of pulsatile tinnitus that doesn't have a vascular abnormality but rather is caused by excitation of the auditory system by sensory nerves, or failure of the brain to surpress cardiac sounds.
       
    10. Suffering

      Suffering Member

      Tinnitus Since:
      01/2015
      • Helpful Helpful x 1
    11. Kaelon
      Wishful

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      Thanks so much, @Suffering. This is a great synopsis of treatment available to people who have compromised Dorsal Cochlear Nuclei, like all of us who have principally somatosensory tinnitus do. It really does sound like long-term physical therapy is the only way to get this condition properly diagnosed and treated.
       
      • Agree Agree x 1
    12. Worker

      Worker Member

      Location:
      England
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      lots going on at the time
      Kaelon and Pilot have you ever thought that a blood vessel/artery could be compressing on a neck bone and conducting the noise via the bone to the ear? I saw a consultant yesterday who said that bone conducts noise.
       
    13. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I initially thought it might be a problem with my neck, maybe a nerve or something. Yawning tends to temporarily increase mine more than anything, so I can't really isolate a specific area in the neck.

      Along with the pulsating hiss, I also had a 3 month period of noise sensitivity known as "winding up" and "kindling" where the hissing would get louder and some static and ringing would start. It's 95% improved now.

      I also experienced some strange phenomena with my auditory gain where I could hear it gaining down the tinnitus noticeably over a period of a minute or so after a while of wearing ear plugs in a loud environment.

      With the research team suspecting the DCN, and everything else I experienced, I really believe that something in my brain is to blame. It probably is the DCN, with other parts being thrown off balance trying to compensate. I don't know why though, my hearing is good.
       
    14. Kaelon
      Wishful

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      It's important to note that Dr. Levine's studies theorize that there are really one of two scenarios where the DCN is compromised:
      1. Neuromuscular inflammation of the neck or head which causes nerves in the muscles that are spasming to interfere with the DCN's conduction and filtering process of auditory signals, generating tinnitus; OR,

      2. Neuromuscular conflict somewhere along the auditory pathway (also likely from a spasming or injured muscle group) erroneously activates the DCN and causes tinnitus.
      In either case, it seems likely that the somatic nature of the Tinnitus indicates that the problem isn't circulatory (and has an arterial blockage as the likely explaining factor here), but instead a question of cervical compression that can be best treated with re-alignment therapies and long-term physical work.

      I haven't read that the DCN can be compromised by simply "something in the brain." Separate studies have shown that when the brain is principally to blame, there is widespread malfunction of numerous centers, including those that are linked with emotion and memory, usually indicating some sort of auditory trauma as the genesis. Tinnitus caused by auditory trauma, however, does not ordinarily have a somatic component.

      Therefore, one has to conclude that the etiological origin of your tinnitus rests principally on whether it responds definitively with somatic provocations and, more importantly, if it can be completely resolved through the use of powerful anti-inflammatories that suppress the somatic conflict to begin with.
       
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    15. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Hey guys, glad I found this thread as I am becoming more and more convinced as time goes on that I have a case of SSPT. The only reservation I have in totally believing this is that my pulsating is not continuous. Sometimes I hear the pulsing, perfectly synced with my heart beat. But other times, I only hear a continuous hiss, maybe with VERY mild pulsing if I listen extremely closely, but this could be my imagination.

      I have also noted that sometimes my pulsing goes with every other heart-beat. It's like it goes up with one beat, down with another, then up with one, down with another. Very strange.....

      Any input on this would be greatly appreciated! Thanks guys! - Steve
       
    16. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      Mine isn't continuous. I can make it start by putting my head in certain positions, but in a neutral position sometimes it's there and sometimes it isn't.

      I haven't experienced the alternating beats, mine goes right with the heartbeat when it's there

      I believe I have the condition too, I just gave the research paper and treatment outline to my doctor today. I'm not sure if I'll do the treatment yet, I'm waiting to see if mine keeps improving. I doubt insurance would cover it anyway.
       
    17. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Hey @Pilot, thanks so much for the response! Good to know that at least I'm not the only one whose pulsing is not continuous. I see that we're not too far apart either, I'm located in Richmond, VA. I'm curious about exploring this route after getting some GREAT information from Kaelon (that has since been deleted along with my old profile......still not happy about it) regarding the symptoms and tell-tale signs.

      I've attributed my T to numerous things over the last 7 months, from noise exposure to ototoxicity, both of which I had exposure to (130 Watt M-Audio Studio Monitors currently sitting on my desk. Ototoxicity from an ingredient in Electronic Cigarettes - Propylene Glycol. I have quit using E-Cigs completely since the day of my T onset.) However, after reading some of the info @Kaelon shared with me about ototoxicity I am very doubtful of that being a cause, and my hearing is spot on. Perfect standard audiograms, can hear up to 17.5 kHz in both ears, and my right ear (the more problematic ear) can actually hear the higher tones BETTER than the left. I feel that 10 years of mild scoliosis, 8 years of orthodontic work including a total of 14 tooth extractions, a year of sitting in front of a computer way too much, and spending 40 hours a week on a meat slicer the last three years have had their toll on my neck, back, and shoulders. I'll also say that I've been experiencing jaw pain for the first time in my life since the onset of my T, yet an MRI of the joint came up negative for TMJ.

      Sorry for the long post, just been thinking about this quite a bit lately. Have you looked into or seen any Neuromuscular Dentists or something of the sort in the DMV area that you would recommend? Thanks again Pilot! I truly think that we are on the right track here! - Steve
       
    18. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I've done a bunch of research but I can't come up with anything that I think caused mine. My hearing is normal up to 8k, I haven't been tested above that. I think my hissing sound is below 8k, but I'm not sure.

      I don't have any pain or discomfort in my head, neck, or jaw. I occasionally get tightness in my trap muscles in my upper back, but it's been fine for quite a while. So I haven't pursued any neuromuscular treatment.

      If I do a treatment it would be P-STIM, which is auricular electro acupuncture.

      Hopefully we can keep moving towards quieter times.
       
      • Like Like x 1
    19. DebInAustralia

      DebInAustralia Member Benefactor Team Research

      Location:
      Geelong, Victoria
      Tinnitus Since:
      30/12/13
      Pilot

      Sometimes i think my white noise/hissing is pulsating..

      So this thread of interest to me..

      Do u experience residual inhibition with your t?

      I can quieten my hissing considerably..but only temporarily..

      Can u send me info on the treatment u r considering?
       
    20. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      So wait, I'm confused. For a while now I have thought that my T may be attributable to muscular inflammation/compromised DCN, but now I see that somatic movement in this type of T actually LOWERS the volume/pitch temporarily. Mine does exactly the opposite.

      I have not found any somatic maneuver that causes my T to LOWER in volume, but moving my jaw to either side, turning my head, and opening my mouth, even slightly, makes my T a higher pitch and slightly higher volume. Really, tightening any muscles in my body, hands, legs, etc, causes my T to jump temporarily.

      Is this indicative that I don't have SSPT, but instead have some form of otological tinnitus? Thanks so much for any info, greatly appreciated! - Steve

      @Pilot
       
    21. Nucleo

      Nucleo Member Benefactor

      Tinnitus Since:
      02/2011
      A lot of people with tinnitus can modulate their tinnitus by moving neck or jaw. It can either make it lower or louder. I can do this too, it gets louder when I open my mouth wide or when I tug my ear lobes.

      My opinion is no matter how you look at it, T almost always originates from hearing damage one way or another. The compromised DCN theory might just be a byproduct of that. DCN receives less signals so in an homeostatic response, some of the somatic feedback is being fed/borrowed to the auditory system and becomes well you get tinnitus or other audiological symptoms may arise.
       
    22. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      From the research report, typically people with this syndrome can both induce or inhibit the pulsating by moving the head, neck, or jaw. For me there are a few things I can do to induce in either ear, and a few things I can do to suppress it. It is dominant in my left ear, I have to go out of my way to induce it in my right ear.

      Attached are the report, and a summary of the treatment that Dr. Levine sent me.
       

      Attached Files:

      • Informative Informative x 1
    23. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      DebinAustralia, I forgot to answer your question about residual inhibition (RI).

      I've experienced strange volume reductions in T, but I'm not sure if it is RI. A few months ago when I was suffering from "winding up" and "kindling" (T increases when exposed to noise), I could get the T to quiet down by using ear plugs in a loud environment. I went to a loud show for a couple of hours with ear plugs and when I took them out the T was basically gone for about an hour. This happened several times, and still happens today but much less noticeable. I think it is less today since my "winding up" and "kindling" are 95% gone. I had gotten so used to it happening that sometimes I did it just for relief, and I could hear the T quieting down since it did it rather abruptly (over the course of a minute).

      Another T reduction phenomenon I have is that I'll sometimes get a little static and ringing if it is really quiet, then it gets a lot quieter as soon as a sound is present. Even if I plug my ears I have trouble finding the sounds. My watch alarm is enough to suppress it. I never hear the static or ringing during the day, usually when I'm waking up.

      Both seem to be connected to my auditory gain somehow.
       
    24. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Hey @Pilot , just one more question for you, (Please tell me to shut up if I'm driving you up a wall) but when you say you can suppress the pulsating, do you mean you can silence your T completely? Or are you saying that with certain somatic movements your pulsating turns to a steady tone?

      My T only pulsates at certain times, not always, but when it does, I can definitely make it a steady sound as opposed to a pulse through somatic movement. I can't silence it, but I can stop the pulsing. Thanks again for your time! Hoping for the absolute best for us all! - Steve
       
    25. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I'll answer as many questions as you want, it's no problem.

      I can usually suppress the pulsating sound completely by pushing on the right side of my jaw. If my T is aggravated then it's more likely to make it go steady instead of going away. There are also certain maneuvers I can do where it starts a steady hissing sound that turns pulsatile after a few seconds.

      I think in the report there was at least 1 person that the suppressive maneuvers changed it from pulsatile to steady, so it's in the ballpark.

      The other thing about this syndrome is that it is a higher frequency sound, instead of a low frequency sound that happens from a vascular cause.

      I'm really self diagnosing myself as having this, doctors haven't told me I have it. But two doctors have at least taken the report to read, they seem to trust my judgement.
       
    26. Worker

      Worker Member

      Location:
      England
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      lots going on at the time
      Has anyone here tried the suggested treatment in the paper and it is successful?
       
    27. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I haven't. I've found a couple of places that do it and will ask my insurance company if they cover it, but I'm waiting to see if mine goes away on its own. One doctor that is seeing me is going to ask an acupuncturist about it. I will do it if it doesn't go away and bothers me. I think it is a pretty low risk treatment and worth a shot for someone that believes they have the syndrome.
       
    28. Worker

      Worker Member

      Location:
      England
      Tinnitus Since:
      06/2014
      Cause of Tinnitus:
      lots going on at the time
      Thank you. I have had mine for 14 months without any let up. I have now had mri,mra,mrv,ct,cta,ctv and lp and nothing found. But this pt gets very loud and i can feel the pulses.
       
    29. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      That's really tough. I would think they would have found it with all those tests if it was vascular. If you can feel the pulsing all the time then maybe it is something to do with blood pressure. I can feel slight pulsing and it gets louder only when I stand up quickly, bend over, or my heart is playing catch up. It only lasts for about 5 heartbeats though. I think feeling a slight pulsing under circumstances is probably normal.

      Have you thought about sending all your scans to another PT doctor to take a second look?
       
      • Creative Creative x 1
    30. Jay M
      Thinking

      Jay M Member

      Location:
      South Carolina, USA
      Tinnitus Since:
      4/4/14
      You can develop SPT on top of existing T (from hearing loss) which I believe is more likely unrelated. I have both. My T from hearing loss is the quiet room T (eeeeeee) and many ppl have this type, aware or unaware. April 2014, I woke up for no reason with what I know now is SPT. The SPT is louder and more bothersome. When I contract my neck, etc... I can greatly reduce the SPT. I believe painless inflamed pulp of a tooth or many teeth can be the hidden cause of SPT. The TRIGMINAL NERVE is divided into three sections all running by the ears: lower jaw, upper teeth and sinus' and around the head. This nerve is hyper excited bc it's been dealing with a losing battle of bacteria invading the nerve from a decaying tooth (or teeth). IMO this creates the buzzing rhythmic pulsation, all coming from the nerve's inside a tooth (or many teeth). Think how much it hurts when a dentist pokes a cavity. Now imagine that the body has been dealing with this bacterial invasion with inflammation all w/o pain ...for a long time. The immune system always reaches a breaking point and SPT might be the result for many ppl.

      It only makes sense to me and here's why (long story, short). Things happen for a reason. Three weeks ago I broke off the cusp of a tooth (molar) bc of a hidden cavity between the teeth. I never experienced any pain but it obviously needed a root canal at that point. Since the RC I've been experiencing a noticeable reduction of SPT, it's still there but not as loud on bad days, my good days immediately got better and in more consecutive days. For many SPT waxes and wanes. I'm going back to dentist next week to start work on getting the necessary CAP for the molar. However the molar next to the broken tooth was affected and has a decent cavity underneath the preexisting filling. It's either going to get refilled or possibly another RC. My advise if you're dealing with SPT is to have your dentist carefully evaluate your dental xrays for any suspicious or hidden tooth pulp and ligament inflammation, even for subtle. I've read many times that more than 70% of Somatic T can be resolved with "PROPER" dental procedures. Hope this helps.
       
      • Helpful Helpful x 1

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