Somatic Pulsatile Tinnitus??

Discussion in 'Support' started by Lindagb, Jun 18, 2015.

tinnitus forum
    1. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Hi there!
      I'm Linda. I've had pulsatile tinnitus for 2 years now. I noticed it the first time while straining my neck to look at my back pant pocket. I heard a vibratory like sound in my right ear while I was looking hard to the left. I didn't think much of it other than not liking the sensation so I stopped. Since then anytime I'd strain my neck to that position I would hear it. After about a year of it, I began paying more attention to it. That's when I realized it was pulsatile in quality and it "wa woos " in time with my pulse. Mine it what I consider low pitched and I only hear it when my head is turned left and slightly bent at the neck. It's normally a fast whoosh however, if I open my mouth, move my jaw sidewise or swallow I can hear it longer. My sternocliodoid must be jetting out in order to hear the pt. As long as my head is not turned left, the muscle is relaxed, the sound is lot audible. I cal also sometimes, while my head is turned, press hard on the left of my neck and hear the sound in my right ear.
      In the mornings it's very very low pitched and so quiet that I can hardly hear it when I try. It is louder in the day but when I've been very actively working or exercising, after running up stairs etc, the sound is never heard no mater how hard I try to elicit it.
      I have had an ultrasound on my neck, a ct of the temporal bones,an MRI of my head, mra and an mrv of my head and neck with and without contrast. I have seen an opthamologist. I saw a neurotologist who ordered the ct and they did not hear a bruit behind my ear. The vascular neurologist who ordered the mr did not hear any bruit either
      From all the testing all that was found was a dilated mastoid emissary vein on the side of the pt. the eye dr stated I have small crowded optic discs but otherwise normal findings. I've asked about the possibility of needing a cerebral angiogram to rule out an avf however the neuro neurologist who is dedicated to stroke prevention stated that the mr was done on the best machine out there and the pics were very good. They did consult with their top neuro radiologist at uc and they were all in agreement. They stated I'd have more clues on the mr that would point to an avf as well as hear the sound all the time and they too would hear a bruit. Because of this they don't feel I have an avf.
      Aside from the sound, when I trigger it to experiment with pushing on different areas to try to stop it,I end up with pain in my temple that lasts for hours after.
      I know a dilated mastoid emissary vein can cause pt but again the position in which it's heard doesn't make sense.
      I just came across a report about somatic tinnitus also causing pulsatile tinnitus and it shouldn't like this could be the cause of mine.
      I did have a bad neck adjustment shortly before this began as well. I use to think I could stop the sound by pressing on my jugular but now I'm not sure if I'm pressing on the vein or just the sternocliodoid itself. If I trigger it, I can also stop it by gently touching behind the lobe of my ear and anywhere along the muscle itself.. Some spots harder than others.
      I'm wondering how can I know if I'm pressing on the external jugular? And does this seem to be somatic related?
       
    2. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Linda, and welcome!

      I'm afraid I don't know much about somatic pulsatile tinnitus, other than what I've read on this forum. Here is a link to information about somatic pulsatile tinnitus:
      https://www.tinnitustalk.com/threads/somatosensory-pulsatile-tinnitus-syndrome.9534/

      It sounds like you've certainly had the right tests and contacted specialists who are knowledgeable about this condition.

      I was wondering if, since yours seems to have a connection to the neck region, you had considered any type of physical therapy. Not a chiropractor, but actual physical therapy.

      You might try sending a private message to one of our members, Kaelon, who seems to have this same type of pulsatile tinnitus. He might be able to provide more information, or at least an opinion about your particular symptoms.

      I've had pulsatile tinnitus for five years now myself, but mine is constant, and I don't believe it has anything to do with movement of the head or neck. I also have high-pitched regular tinnitus in the same ear, plus some hearing loss. Although I've had a lot of the same tests you've had, they never found anything, so I've just been trying to live with it for right now. Mine has definitely not gotten any worse, and may even be slightly better.

      Have you read about Dr. Levine, who is doing research on this type of pulsatile tinnitus?

      I wish you well on your search to find some answers!

      Best wishes,
      Karen
       
    3. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Thank you for your reply. Of all the testing I've had, I don't believe the MRI itself was of the neck so now I'm wondering.
      The only thing I can think is it's compressed which movements. I have not tried physical therapy as I've never had problems with my neck and even now, it's just the pt. I know that doesn't mean there isn't something going on however.
      I can say that the less I move my neck to that side, the less often I hear it once I finally do. Then the more often I trigger it the more often and easier it occurs thereafter. I've told my husband for a while now that it has to be muscle related and I need to stabilize my head for a while to allow something to heal. This is just guesswork on my part of course.
       
    4. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Linda,

      It sounds to me like you have a better idea of the cause than the doctors do! Yes, I agree that it's too bad that, of all the tests you've had, you didn't have an MRI of the neck. I wonder what it would show?

      There are other people on this forum who have neck and back issues, along with severe tinnitus (but not pulsatile). I really do believe it is a likely cause of your problem. Perhaps a physical therapist, or even a sports medicine clinic, could be of help to you. I certainly understand what you're going through, and know that you're anxious to find some answers. I was, too, until I had all those tests, and the next test for me (CT scan with contrast) would have involved more radiation. That's when I decided to stop going for more tests, unless my PT got worse. So far, it hasn't, so I am just living with it for now.

      Take care, and please keep me posted on how you're doing!

      Karen
       
    5. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      The testing seems never ending. The neurotologist whom I saw wanted a cta with contrast on me as well but I refused which is why I ended up with a neuro vascular neurologist to get the mr testing instead, they agreed that a ct isn't the best test for tinnitus because the bones block too much of the vessels. I'm not sure if that would apply to regular tinnitus or not. I think I could live with the regular tinnitus knowing that it's not dangerous per say but I also understand how nerve wracking it can be.
      I keep telling myself that even though I didn't have an MRI on my neck that the ultrasound I did have would have picked up anything else up. She at least had me trigger the sound while she checked but the muscle blocked the view..however there were no abnormalities found there. I'm wondering if there could be a mass of some kind that presses on a vessel when I swallow and turn. Even then though I would think that if that were the case then light pressure on the muscle shouldn't stop the sound. This is how I came to the conclusion that perhaps it's somatic. Just stinks not knowing if I'm right or not.
      I keep thinking I need a cerebral angiogram to rule out a fistula but I know that test carries some serious risks. Luckily my drs don't feel it's that due to the lack of classic symptoms related to an avf.
      Tinnitus all together is nerve wracking.
      So sorry that you are suffering as well. I have the regular tinnitus too but have never given that much though. I always figured it was my brain at work :) I never hear it though unless I listen for it then I hear three different tones. All steady, non the sound of blood flow or the like.
      I read that Van Gogh possibly cut off his ear because of tinnitus then ended his life for the same reason. Who knows if it's true but it make sense.
       
    6. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Yes, I would think that the ultrasound would have picked up something if you had a mass in your neck. I've heard of a number of people who can stop their tinnitus by pressing on their neck, but I'm not one of them. I've tried so many times pressing on points around my ear, down my neck, etc., and there is no change. For me, the regular tinnitus was just about as bothersome as the pulsatile tinnitus (both were very severe in the beginning), but they have both improved recently. I must have habituated to the sound to a certain extent, as much as that's possible with PT.

      A person I've communicated with on another site had a cerebral angiogram, and the doctor accidentally nicked an artery, so she had to go through months of taking anticoagulants to ensure that she wouldn't have any complications, such as a stroke. It is an invasive procedure, and definitely does have some risks.

      I don't know about the somatic tinnitus, but I guess it is a possibility. Maybe someone else on this site who knows about somatic pulsatile tinnitus will wish to comment.

      Take care,
      Karen
       
    7. Kaelon
      Wishful

      Kaelon Member Benefactor Team Tech Team Awareness Team Research

      Location:
      Boston, Mass.
      Tinnitus Since:
      11/2014
      Cause of Tinnitus:
      Muscle Spasms
      After reading Dr. Levine's paper on Somatic Pulsatile Tinnitus Syndrome, I went to Massachusetts General Hospital for a follow-up on a diagnosis that I had received as the Massachusetts Eye and Ear Infirmary back in November of last year (as vaguely "neuromuscular inflammation," most likely caused by a "neck or jaw issue"). MGH confirmed that Somatic Pulsatile Tinnitus Syndrome was the likely diagnosis in my case, but they were clear to tell me that there aren't any definitive tests for it, and that instead, it's a process of elimination, history, and physical examinations along with cross-referencing tests to determine whether this diagnosis sticks. Here's what they told me:

      Signs of the Syndrome Include:
      • Ability to change volume or pitch of Tinnitus through physical movements of the neck or jaw.

      • Positive response to anti-inflammatory and/or anti-spasmodic medications (partial or total resolution of the Tinnitus).

      • Exhibiting muscle pain, aching, stiffness, and/or spasming sensations along the head, neck, upper back, or jaw regions.

      • Waxing-and-waning phenomenon; without treatment or intervention, tinnitus inexplicably almost totally resolves one day, only to be louder than it ever has been before the next. While all tinnitus patients experience considerable variation in their tinnitus, Syndrome sufferers are nearly "cured" one day, and then "worse than ever" the next.
      Favorable Tests:
      (These support a diagnosis.)
      • Cervical X-Ray to identify misalignment of the vertebrae (C1-C7 usually complicit).
      • Panoramic X-Ray to identify wearing in the jaw; illustrative of grinding or clenching.
      Exclusionary Tests:
      (Given to rule out something far more serious.)
      • Brain MRI: Exclude acoustic neuroma
      • Brain MRA: Exclude vascular occlusion
      • Head CT: Exclude other conflicts or disorders
      So, that's the good news -- the syndrome is being more readily recognized to explain tinnitus that is principally somatic in nature; according to the ATA, about a third of all tinnitus cases have a somatic component and cannot be explained by hearing loss. However, it's important to note that the vast majority of all tinnitus cases are, of course, connected to hearing loss or damage. In all cases, tinnitus is a widespread dysfunction of the brain, rather than a single misfiring.

      Here's the bad news -- there is no cure for this syndrome. It comes about due to life-long or long-term chronic problems (usually, poor posture, inadequate sleep, terrible diet and exercise lifestyle routine, etc.); as a consequence, the only treatments that show promise are long-term trans-muscular electrical stimulatnts with physical therapy, which over the course of several years, can reduce the volume (or the perception) of the tinnitus itself.

      Finally, it's important to note that I was advised that neck MRIs (and MRI's in general) are terribly inefficient and likely won't show any malfunction that can definitively explain the syndrome. If you've read Levine, you'll note that the neurological etiology of the syndrome is a neuromuscular conflict that reaches the back of the head and interferes with the normal functioning of the dorsal cochlear nucleus, or DCN, and that because of the interconnection between all of the muscle and nerve groups of the head, neck, back, and jaw, it's almost impossible to pinpoint where the spasm begins versus where it simply continues.

      I hope this helps.
       
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    8. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Thank you both for the info. It is helpfull. I did read the paper that you refer to which is what Meade me wonder if this is what I have. He mentioned in it that there were two patients at his clinic that were like mine where as they did not hear it until the triggered it which was the opposite of those who were specifically included in that particular study. The paragraph said for them it was a clear cut case of somatic pulsatile tinnitus.
      I'm tempted to try an anti inflamatory but I'm thinking over the counter stuff would be too mild.
      I myself don't notice spasams in my neck but I've had life long back problems resulting in spasams. I can tell there is tension in my neck and that muscle. In the past the chiropractors always mentioned my vertebrae in my neck being off. Given the number of years I worked as a hairstylist then rehabbing houses, non of that surprised me.. Not to mention the bad neck adjustment by my old chiro.
      I certainly believe my movement is compressing a vessel leading to the pt and perhaps inflamation is to blame. Not to diagnose myself or anything... Perhaps I will run it by the neurologist and see what they think.
      Again thank you for the help and all the info!
       
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    9. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      I don't recall neck pain, spasms, aching, etc. or the waxing and waning being mentioned in the research that Dr. Levine did. They actually say that it is relatively constant. Have doctors at MGH done additional research to change this? If not then it seems like they are trying to gravitate the definition closer to somatic tinnitus.

      I had in my mind three types of tinnitus (that we are talking about):

      "somatic" which is caused by a physical injury in the head, neck, or jaw (could be something going on in the brain too). Treated by treating the injury. Tanit Ganz Sanchez in Brazil is a leading doctor if a person has unusual symptoms such as gaze evoked tinnitus (GET).

      "pulsatile" (lower frequency) which has a vascular origin. Treated by finding the vascular defect. I think Dr. David Eisenman in Baltimore or Dr. Maksim Shapiro in New York are very good.

      "somatic pulsatile tinnitus syndrome" (higher frequency) which has auditory characteristics of both, but does not have a vascular origin or physical injury. Instead caused by a change or failure in the Dorsal Cochlear Nucleus. Treated with P-STIM (somehow it reduces sensory inputs to the brain). Dr. Robert Levine is the most knowledgeable.

      I think it's entirely possible for someone to have two out of three types at the same time.
       
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    10. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      I was under the impressing that somatic tinnitus in the pulsatile form indicated somatic tinnitus but from a vascular sorts as well as somatosensory. Kind of a mixture of each if you will..
      I know somatic tinnitus on it's own definitely represents regular tinnitus being modified by position change, clenching the jaw etc.
      when I read about somatic pulsatile tinnitus they described people that were able to stop the pulsatile tinnitus all together at times. I also believe I read that it was vascular but unclear as to how it was transmitted as such.
      I took the repost to mean that it was vascular tinnitus and the sounds of blood flow were being transmitted to the hearing nerve.. The reason the nerve did not block the sound ( due to a failure) or due to something else causing the sound to now be audible despite a normal nucleus, was what was unknown.
       
    11. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      The two possible causes that Dr. Levine lists are a) cardiac synchronous somatosensory
      activation of the central auditory pathway or (b) failure of the somatosensory-auditory central nervous system interactions to suppress cardiac somatosounds.

      For a) my guess for what is happening is that somewhere there are sensory nerves that are near a capillary or other blood flow, which is normal, and they are "feeling" the pulsating blood flow. They send the signals back to the brain along the sensory nerves, but it is so small that no one would ever actually feel it. When the faint signal gets to the Dorsal Cochlear Nucleus, the nearby auditory nerves have mal-adaptively latched on and pick up the signal and send it to the auditory cortex so that a person now hears what their sensory nerves originally sent.

      I don't understand b) as much, or the mechanism of the brain to suppress cardiac somatosounds.

      The problem seems to lie solely in the brain though, most likely the DCN like they mention in their research.

      In classic pulsatile tinnitus, a person can directly hear their blood flow as it goes near their cochlea, usually because the blood flow has become turbulent. All of the nerves and cochlea are functioning normally. A person with PT shouldn't be able to move their head, neck or jaw and stop it because you can't stop blood flow by moving around. In PT there is usually a physical abnormality in the vascular system (or a pregnant women in her second trimester). One test they can do to figure out if it is venous or arterial is to push on the jugular vein or carotid artery. If pushing on the jugular stops it then it's venous, if pushing on the carotid stops it then it's arterial.

      Somatic means it can be changed by physical movement, which is common for all types of tinnitus. But it is rare to be able to suppress or eliminate tinnitus with movement. Usually physical movement makes it worse, if it makes it better then there is a much greater chance for the tinnitus to go away.
       
    12. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Hum.. this is all so much to try understanding. Mine clearly has a somatic component since I only hear it when my head is held in a certain position and not other times. If my head is turned i sometimes hear it whenni start to yawn too.. I thought it stoped with pressure on the jugular but now im realizing that even if im not touching a vessel i can stop it just by ligtly touching the muscle, behind my ear lobe etc. I had hoped my testing would have given a diagnosis but the fact that it didnt and my symptoms being so strange make me wonder if it could be something like this. It seems to be something compressing a vessel cause if I turn my head then pinch my neck with my left shoulder I hear a fast whooshing the right ear as if I've squirted the blood up and through to the other side. Its my assumption that its the same reason the head position is what causes the sound. perhaps something not seen on testing is compressing a vessel, or causing a vessel to press the nerve in this position.ugh :( Mine started during pregnancy but never went away. It certainly sounds like blood flow to me..its a whoosh sound that takes the form of woo woo, woo woo. The pitch varies as does the loudness. Most of the day its the same tone of someone trying to make a shh sound..or close to that anyway. I never hear it if I plug my ear or plugged ears due to a cold. I can also hear my jaw on that side slide into position, it moves around as well if I press my cheek. Its all so strange, I just dont want to worry about a fistula.
       
    13. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      It is hard to understand, I'm sorry you are going through this. I think we are our own best doctors and that you will figure it out. I've been dealing with mine for 6 months and have spent a lot of time researching and trying to understand mine. I spent a lot of time researching somatic tinnitus, and a lot of time researching pulsatile. My symptoms have characteristics of both but didn't fit into either. When I read about somatic pulsatile tinnitus syndrome then everything made sense. I also had noise sensitivity and what's known as kindling and winding up effect which caused my ears to ring after being in a restaurant for an hour, or near a fan for several hours. That lasted 3 months and made it obvious that my problem was in my brain.

      It sounds like you are talking about the sternocleidomastoid muscles (SCM). It is the muscle behind the ear lobe and is attached to the mastoid bone in that area. The right side would also be in play when turning your head left.

      The SCM has been known to transmit sounds to the ear through the mastoid bone, I think it would normally happen if it is injured or has trigger points but who knows.

      My left ear gets the loudest when I fully stretch my left (SCM), I stretch it looking up at the ceiling and trying to touch my right ear to my right shoulder. I can suppress sounds in my left ear by pushing on my lower right jaw, I think it is relieving something in my left TMJ. I have no TMJ discomfort though.

      It's strange that you can't hear it if you plug your ears. If it was a fistula I would think it would be more constant.

      Do you hear it in both ears?
       
    14. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Yes the sternocliedoidmastoid is the muscle I was talking about. I don't hear the sound if I stretch my neck up but I read that that causes tension on the vessels and can cause pulsatile tinnitus. Mine has to jet out of my neck therfore really straining for my sound to be audiable to me which is the positions I described above. It's almost as if the muscle is so tight that it's squeezing a vessel or moving it closer to the ear but again, just guessing.
      Your movement with your right ear to your right shoulder is exactly what I do to my left ear and left shoulder which causes a fast gush like sound in the right ear. It only lasts for a second though.. typically the pt I have even when in the position to alow me to hear it, only lasts seconds. Rarely will it last longer than 30 seconds while in that position but every time I straighten then go back to that position it does it again.
      my pt is only in my right ear... well, I do on occasion get a different pulsatile sound in the left but that's only when I bend down quickly. Its a swish swish sound, higher pitched, quite and that I can hear with my ear plugged. I assumed that was intercranial pressure but iih was ruled out so the assumption is that pregnancy and hormones from pregnancy are to blame for it. It's kind of strange though, if I press hard on what I know is my carotid when I hear that sound while bending, it will sometimes cause it to stop but makes my typical pt ear make its sound.
      have you seen anyone about tmj? I saw a chiro about it since I hear sounds when I move it and I have a slight issue he said., he did some kind of treatment for it but it hurt so bad doing it and for days after that I couldn't go for more.
      My Dr's don't believe I have a fistula since mine is subjetive, not there unless I have my head just the right way, low pitched with a two beat sound and because I can't hear it if I plug my ears.. all of which should be the opposite if it were a fistula. Plus the assured me that my images were very good. Even though they found a dialated vessel, there were no signs with that to make them think a fistula was to blame, I wish I could let that ease my mind especially since they did find a dilated emissary vein that's a known cause of it, but I know not everyone is textbook so anything is possible.
      I too thought it made sense when I came across the somatic pulsatile tinnitus report. I nearly cried because it was so similar to my symptoms. All except for the high pitched part anyway. Reading about The two cases that paper describes regarding the patients that had interment pt but could elicit the pt with headmovements made me want to jump for joy!
      I am really starting to think my old chiro and the bad adjustment caused this in some way. I can not come to any more logical conclusion for mine other than thinking a vessel is being compressed. Why I can't hear it with my ear plugged is a mystery though.
       
    15. Pilot
      Mellow

      Pilot Member Benefactor

      Location:
      Baltimore, MD
      Tinnitus Since:
      December, 2014
      Cause of Tinnitus:
      Unknown
      A dentist did a check for TMJ but didn't see any problems. I don't have any symptoms of it either.

      Some doctors can listen around your ear with a stethoscope, maybe a doctor could listen near your ear while you do the maneuver that creates it.

      Fun times.
       
    16. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      My drs did attempt that, no luck.
       
    17. Lous22

      Lous22 Member

      Tinnitus Since:
      01/2015
      Linda-

      I found this thread while doing a google search and could not believe what I was reading. I have your EXACT symptoms...I mean exact. I hear my pt in my right ear when I look down and to the left, or over my left shoulder. Or when I touch my right ear to my right shoulder. I do not hear it when I'm just looking straight ahead. If I press on my right jugular vein the noise stops. If I press my left jugular vein the noise in my right ear increases. I can manipulate the noise with my jaw. When I bend down or stand up I sometimes hear one long whoosh. If I lightly touch behind my right ear the noise stops. Mine started 3 months postpartum. I have had an MRI, MRA, MRV, temporal bone ct...all negative. Actually, one neurotologist claimed I was missing a bone in my ear, but the next neurotologist said this diagnosis was wrong. Have you found anything else out since you last posted? Mine has been going on for a year and I too fear something serious is being missed.
       
    18. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Wow, all exactly like mine. . I feel like something is pressing against a vein causing it to block a vessel.. it seems to be related to my sternoclidoid muscle as it always has strain on it when I hear the sound. Ive been told that when you turn your head left the left jgular becomes compressed and colaterol pathways are auppose to take over but if those collateral paths are being compressed, it can cause a rush of blood being diverted down the other side and this can lead to the sound. (The one neurotologust I saw was pretty sure it was a diverticulum. Wasn't though.).. It could also imply that a vessel is close to the hearing nerve or the bone, leading to the ear picking up the sound. Have you heard about bow hunters syndrome? Or rotational artery occlusion? These conditions make me wonder. It hasn't changed since my last post. I don't suppose you have a dilated emissary vein? Does anyone suspect pseduotumor for you?
       
    19. Lous22

      Lous22 Member

      Tinnitus Since:
      01/2015
      I have not researched bow hunter's syndrome or rotational artery occlusion but will look into those. I have not been told I have a dilated emissary vein either....but perhaps that was missed. I need to circulate my films to more doctors. No one suspects pseduotumor either. I have been told by two docs that it is a "venous hum" but I don't feel comfortable with that diagnosis...I feel like its something else. I'm not even sure where to go next. Do you belong to the Whooshers facebook group? Its for people with pulsatile tinnitus. Its been really helpful to me. Please let me know if you ever discover anything else about your condition....I will do the same. I cannot believe I found someone else with such similar symptoms. Thought I was the only one!!!!! I truly think we're suffering from the exact same issue, whatever that may be.
       
    20. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      I thought about sending my films. UT haven't bothered.. mainly because of the Dr's I went to see were very familiar with pt. The neurotologist and the neuro vascular neurologist I saw were bot out of the university of Cincinnati and the later is a dr who focuses on stroke prevention and very familiar with pt as well because of this. These were the only 2 Dr's in the area that were familiar with this condition. I have however baffled everyone because it's positional only. I know the Dr's did everything the feel needs done based on the crazy symptoms. I hope they are correct when they say with my symptoms and imaging results, that it's not something dangerous. Did you happen to see a neuro opthamologist? I did just incase and all was ok there, they say pseduotumor can only be diagnosed with a lp even if all other tests are normal it can still be a cause.. to this I think it would not be positional.
      I was a member of the whoosh erst page and I'm sure a good number of them would remember me as well... mine was the only one positional. I had some issues with emma.. she told me that if it's positional it's not pt. I could go on so IL just say we didn't see eye to eye and my research and proof there of was always challenged.. we couldn't support anyone without being warned that it sounds like we are giving medical advice, even if we were only speaking of our own experiences.
      Do you have jaw issues? I can easily move my jaw with my hand on that side..i can hear it slide into position when i open my mouth as well. I've tried to find out if the jaw can press on a vessel in the case of tmj..it's not clear though. Do you get the impression that movement is compressing a vessel, or moving a vessel close to the hearing nerve? That's the only thing that makes sense to me, especially after all my extensive research on the matter. Ever seen a chiropractor? I know scar tissues, fibrous bands etc is known to cause compression of vessels leading to symptoms. As much as I fear an avf, theses symptoms make no sense when it comes to that. Turning your head left naturally blocks the flow through the left side and collet oral pathways then open up..same turning your head right.. when that vessel is closed a normal rush of blood diverts through the contralateral side. This is why I could see a diverticulum being possible but that was negetive. A lot of movements increase flow.. I can't help but think an avf might be opening up during those maneuvers causing the sound but in theory those should, when they exist, have flow through them at all times..sorry. just thinking out loud.
      All I can say is I'm sure it's neck and jaw related..specifically that muscle. If I press lightly anywhere along that muscle, the sound stops until I release, it's not just pressing on a vessel that stops it. Pressing my jaw bone in front of my ear lobe stops it too... does yours go away when you exercise?
       
    21. Lous22

      Lous22 Member

      Tinnitus Since:
      01/2015
      I'm pretty active on the whooshers facebook page...there are a few of us now who have pt that's positional. None of us know the cause, however. I do have jaw issues and was diagnosed with TMJ several months ago. I clench my teeth at night and when I'm nervous, although I've been trying to break the habit. When I hear my pt it will get louder if I open my mouth really wide. If I press my jaw none mine stops too, but I think I'm pressing on a large vein right there. Isn't there one in that location? Also, do you ever hear one long whoosh when you stand or sit up?
       
    22. Joan A.
      No Mood

      Joan A. Member

      Tinnitus Since:
      2000/ spike 2006/ massive 2009
      Cause of Tinnitus:
      unknow
      OMG! THIS IS ME BY 3 YEARS!!! Driving me to despair!
       
    23. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Along the jaw bone, there is not a blood vessel.. sure small insignificant ones but not one that would have an effect of pt. The main vessels are up the neck and branch off in front of the ear and behind it. Those run up and the ones running across the face run in, behind the bone to my understanding. pressing the bone near the jaw hinge, directly in front of the ear could potentially alter the flow but pressing lower down, along the angle of the jaw wouldnt. The temporal artery could be compressed but that's right in front of the ear and up psst the temple and forehead. The jaw component has stumoved my drs. I've read that tmd or tmj can cause pt but haven't found much to go on or a direct explination as to how it can cause it. How did you get diagnosed with tmj? I know I have it, not only can I hear the movements and move the jaw but my teeth aren't aligned and I open my mouth crooked.
      As far as Facebook whooshers go, do other people have the positional pt when they beND their necks? I don't get a whoosh when I stand or sit up.if I'm laying on my back and I use my upper body to lift my shoulders up or raise my head with my neck.. rather than using my arms to assist, then I will hear it sometimes.. again, my neck muscles have to be straining or tensed for me to hear it.
      A girl names Jennifer fruendel or something like that mentioned to me that she gets that a lot when she stands.. she has narrowing of the transverse sinus and iih. Pt can change based on position but it's very very rare to not have it at all unless you move a certain way.this is the most puzzling piece. Having it all the time and diminishedor getting louder when Turing the head is very common as those movements effect the flow.
       
      • Informative Informative x 1
    24. Joan A.
      No Mood

      Joan A. Member

      Tinnitus Since:
      2000/ spike 2006/ massive 2009
      Cause of Tinnitus:
      unknow
    25. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      i have read that article in the past.. its me to a t except, my pt is low pitched.. expecially in the morning.. almost like a bass drum. it does it higher in pitch throughout the day with it being the highest in the evening but... even then the pitch is still low.. a med range at best but never would i call it high pitched.
       
    26. gennnnnn

      gennnnnn Member

      Tinnitus Since:
      i dont know since it started
      Cause of Tinnitus:
      unknown
      Hey Linda i have the same problem..
      I can hear the.sound when i turn my head to the left , even when i press in the left part of my neck , it is.a sound like: vuuuu vuuuu vuuuu ... Wanna ask if others can hear it when they put their ear on your ear cuz my sound is heared even from others... I have recorded it with my phone... I have done MRA of head and neck and even CT of neck .. Nothing was found .. Feeling terribly bad... Sometimes i feel like fainting or like smth happens to my head .. Also sometimes i wake up like no breathing .. I think maybe the noise is the problem that gives me these kind of symptoms..
       
    27. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      I have tried to Ave others hear it.. no luck. My recording won't pick it up either. For the last few monhs, I have developed a swishing sound in the left ear in the mornings, when I bed over. It's sometimes quite loud. If I press my neck on the left when I hear this new aound, it triggers the sound in the right. The sounds are different though from ear to ear. Makes me wonder if it's just a strange way of interracial hypertension to manifest in the begining. I e been checked for that by an opthamologist though and my eyes appear fine as of now. Haven't done a lp though. I even had an mrv to check the veins in my head. They neck wasn't done though. I swear something is pressing on the vessel when my head turns. Can't explain it any other way. And yes, the breathing sounds like anxiety brought on my the pulsatile tinnitus.
       
    28. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      I'll be interested to hear if any of you find a cause for your PT. It sounds like you've explored a lot of options already.

      Mine is low-pitched, and sounds like a bass drum. No one else can hear mine, and I cannot change it at all by moving my jaw, or pressing on any spot around my ear or neck. It is continuous, and I hear it all the time. I also have loud tinnitus in the same ear (right).

      I've been to several neurotologists in my area, and so far, no cause has been found.

      Please keep us posted on your progress.
       
    29. Lindagb

      Lindagb Member

      Tinnitus Since:
      2013
      Have you been checked for a sigmoid sinus diverticulum karen? A CT of the temporal bones will show that but it's pretty new and not many neurotologists have learned about them yet.
       
    30. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, @Lindagb,

      Yes, the very first neurotologist I went to ordered a CT scan of the temporal bone. Nothing was found, I'm afraid. I think that was what he was checking for, although I didn't know it at the time. I hadn't read up on this condition very much back then. Since then (6 years ago), I've certainly learned a lot about pulsatile tinnitus.

      In my case, it started very suddenly, and probably had something to do with changes in blood pressure. I'm back to normal now, blood-pressure-wise, and am no longer on any blood pressure medication. However, I still have both tinnitus and pulsatile tinnitus. What a mysterious condition this is!
       

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