HOMECured WhooshersPulsatile Tinnitus SoundsNews & PressTop Ten Tips For Doctors, Written By DoctorsUpcoming EventsWhooshers T-ShirtsWhoosher WednesdaysPetition for a Pulsatile Tinnitus Diagnosis Code - WE SUCCEEDED!Pulsatile Tinnitus ResearchPoll ResultsMap Your WhooshArchives/Previous PostsAbout This SiteContact Us

Whoosh [hwoosh, hwoosh, woosh, woosh] noun 1. a loud, rushing noise, as of air or water: a great whoosh as the door opened. verb (used without object) 2. to move swiftly with a gushing or hissing noise: gusts of wind whooshing through the trees. verb (used with object) 3. to move (an object, a person, etc.) with a whooshing motion or sound: The storm whooshed the waves over the road. Also, woosh. Origin: 1840-1850; imit.

Pulsatile tinnitus is not tinnitus.
Pulsatile tinnitus is a rhythmical noise that is synchronous with the patient's heartbeat.

Archive Older

Another Journey Toward a Pulsatile Tinnitus Diagnosis

I recently received this personal story from a Whoosher who pushed and pushed for diagnostic tests - tests that our symptom, pulsatile tinnitus, clearly warrant - and she finally found a diagnosis. It's yet another inspiring example of diligence and perseverance for answers.

My journey began at the end of January 2018. I woke up one morning with my left ear blocked…like I had an ear plug in my ear and it would not clear. I was not sure why this occurred since I had not been sick at all but have had a history of sinus/allergy issues forever.

I went to my ENT who told me to take allergy medicine daily for 30 days along with a nasal steroid which would open up the ear over time. I did as the doctor told me and followed the medicine routine religiously. Nothing changed.

At the same time I was having dizzy spells and my body felt off. I then started hearing my heartbeat in my ears about 2 weeks after my blocked ear which started keeping me up at night since it was worse when I laid down. I was not sure what this was, so I went to my General Practioner and told him my symptoms and informed him what my ENT told me. He agreed with the ENT and told me to keep on the allergy medicine routine to see if this would change the outcome. He said that since my ear was blocked I was probably more aware of the sound now. He did order blood work though since I had not had a physical in a long time just to see where my levels were and to rule out any other possible issues.

I left the doctor’s office and tried to grin and bear it. I struggled with sleep but did the best I could to ignore it and move on.

My blood work came back about 1 week later which did show that my thyroid was high and my Vitamin D was low. The doctor told me to buy a Vitamin supplement but did not feel that my thyroid levels were “high enough for him to begin treatment.” I thought that was odd especially since thyroid issues are hereditary and run in my family (my grandmother, mother and aunt all have thyroid issues) but trusted the doctor at that time since this was how I was raised.

I was not feeling well and the whooshing was really bad at night. Some nights were so bad that I could feel my heartbeat throughout my entire body which was keeping me up.

It was now the end of February 2018 and I was trying to work through it but having issues feeling ok at work. I then went back to my GP in March and told him that I was not getting better, I was not sleeping well and that my body felt like electricity was running through it. He still refused to deal with my thyroid and referred me to a neurologist since my head was now feeling tingly all over when I touched it or ran my fingers through my hair. I went to the neurologist the next day who said he thought it was migraine related and ordered an MRI.

The results were back a few days later….they came back normal. I was discouraged but the neurologist said I should take Depakote (anti-seizure medicine) for 30 days to see if this helped with the whooshing and sleeping. It did for a bit but then came back. Plus, I was not happy having to take medication for something when I did not have a diagnosis but I did as the doctor told me and followed through with the medication for 30 days.

After 30 days was up and no change in results in the whooshing arena, the neurologist told me he was not sure he was able to help me any further. By this time, I had come across Whooshers.com and asked the neurologist if he would order an ultrasound of my carotid artery to check for anything vascular, which he did. He ordered the test for my neck (not my head) but I thought it was better than nothing.

I found that doctors don’t like to request tests unless you push and push - so that is what I started to do. I was on a mission to determine what was wrong and I was still feeling awful. The ultrasound was completed in late March and came back normal. Discouraged again, as I knew that there was something wrong but doctors were telling me that it was in my mind.

Funny thing was when I was getting the ultrasound, the technician asked why I was there and I told her about my whooshing. She asked if I was anemic since she was and did get that whooshing sound when her levels were low. I told her that no one had said I was but it made sense to me that that could be an issue since my thyroid was high but no one was willing to help with that.

I then started down the anemic path thinking that something with my thyroid issues may be causing my whooshing issues. I went back to my GP to push for getting on thyroid medication. I was then told that I was having anxiety and he wanted me to take Lexapro to deal with that first, before anything else. I did not go back to him after that.

It was at that time that a friend referred me to an endocrinologist to have my levels reviewed. Why my GP never mentioned that there was a doctor who specialized in thyroid I don’t know, but I was willing to do anything at this point.

I needed someone to believe that I was having symptoms even if the test results for the most part were coming back "normal." I did not know how to get better and needed to find a sympathetic doctor who would really take the time to help me figure out what was wrong.

I went to see the endocrinologist at the end of April who looked at my blood work and said that I needed to be on thyroid meds for sure. He did not understand why my GP was not willing to put me on thyroid since my levels were clearly an issue. He also said that thyroid issues cause rapid blood flow, which may be why the whooshing sound I hear was high though he did say that my thyroid issues were not the reason for the whooshing since it was not a common symptom of thyroid issues. He also told me to not take Lexapro since I was not anxious or depressed and said that he finds that a lot of GPs prescribe anti-anxiety medication when they do not know how to diagnosis or treat thyroid issues. He said that anxiety is a very common thyroid imbalance issue and with what I have been through it made sense that I would have a bit of anxiety since I was not feeling well.

I was relieved that my thyroid was now being dealt with but was still unclear about the whooshing.  I did leave this doctor’s office feeling optimistic, which I had not done in awhile. I left that day with a better outlook and knew I was on the right path. I started taking my thyroid meds the next day and a lot of my symptoms subsided (dizziness and electrical feeling throughout my body), however the whooshing was still there, just not as loud as before.

I then continued on the path of working to figure out my whooshing. I found a new GP who agreed with the possibility of anemia and found that my ferritin levels were low, which can cause a whooshing-like symptom. I was on iron supplements for 90 days and my whooshing did improve a bit but was still there.

When I went back to check my ferritin levels and they came back within normal range, my new GP decided to order an MRA since she agreed with me that this may in fact be something vascular since my “levels” did not eliminate my whooshing symptoms. I was grateful that she was willing to work with me to find an answer.

I underwent my MRA test in August which came back abnormal showing that my right cavernous carotid artery and the right supraclinoid ICA segment were approximately 50% narrowed, causing obstruction in blood flow. It was bittersweet for me since artery narrowing is a scary finding, but at the same time I was finally getting answers and tests were coming back with a finding.

I was not crazy!

Both my ENT and my new GP referred me to a neurosurgeon who then requested a cerebral angiogram to be completed. I had this test done mid-August which came back confirming the finding. The results confirmed an approximate 70% narrowing of the right cavernous carotid artery and that it suggests possible Moyamoya disease, a rare progressive cerebrovascular disorder caused by blocked arteries at the base of the brain. 

I have now been referred to a vascular surgeon in LA who specializes in this type of finding and the neurosurgeon was able to get me in ASAP for this to be reviewed and treatment options discussed.

I cannot believe that I finally have a diagnosis! I pushed and pushed and was finally able to find something. I am optimistic about the outcome and really believe that I will have treatment and hopefully whooshing gone by the end of this year at the latest.

More to follow once I meet with the vascular surgeon, but I wanted to let everyone know that Whooshers.com did give me the info I needed to continue to push these doctors in the direction of a diagnosis by insisting on ordering tests. It took time, but I was finally able to get an answer after continuing to follow up and find doctors who were willing to help.

Don’t give up and know that there are doctors out there that WILL help. You may just need to keep pushing to find one.

Carrie Luebcke 

Carrie, thank you for sharing your story. A diagnosed cause of pulsatile tinnitus is just the first step, but it's a huge step.  Good for you for being your best advocate, and we look forwad to following your progress. 

Thu, August 30, 2018 | link          Comments


Archive Older


Whooshers.com

Promote Your Page Too

Follow Whooshers
         on Twitter

RESOURCES

NEW: Click Here to Download the PDF, "Top Ten Pulsatile Tinnitus Tips for Doctors." Review it with your GPs and ENTs!

Diagnosis and Treatment of Pulsatile Tinnitus, Dr. Maksim Shapiro, NYU Neurointerventional Radiology Section, NYU Langone Medical Center - neuroangio.org

Radiation Dose Chart - American Nuclear Society (ANS) Public Information Resources Page: Click here for an interactive dose chart for various medical diagnostic tests. A downloadable and printable version is also available on this page. Discuss with your doctors.

Find a Neurotologist: American Neurotological Society (ANS) Membership Roster

Find a Neurointervention Specialist: Society of Neurointerventional Surgery (SNIS)- Click on "Doctor Finder"

Find a Neuro-Ophthalmologist: The North American Neuro-Ophthalmology Society (NANOS)

Site: Neuroangio.org - Your neurovascular education and information resource. Patient Information.

UCSF Pulsatile Tinnitus Clinic

Blog: Tales From Clark Street

Article: "Pulsatile Tinnitus: Differential Diagnosis and Radiological Work-Up," Sjoert A. H. Pegge, Stefan C. A. Steens, Henricus P. M. Kunst, and Frederick J. A. Meijer, Department of Radiology and Nuclear Medicine, Radboud University Medical Center Nijmegen and Department of Otorhinolaryngology, Radboud University Medical Center Nijmegen, The Netherlands. (SEE TABLE 1).

Presentation: "Algorithm for Evaluation of Rhythmic Tinnitus," Douglas E Mattox, MD, Patricia Hudgins, MD, Jahrsdoerfer Lecture, University of Virginia, March 25, 2010. (This link is to the abstract/summary)

Presentation: "Imaging of the Patient with Tinnitus," Mary Beth Cunnane MD, Massachusetts Eye and Ear Infirmary, Dec 2013. (NEW! Mentions Pulsatile Tinnitus and Whooshers.com. Republished with Permission.)

Article: "Imaging in Pulsatile Tinnitus: Diagnostic Pearls and Potential Pitfalls," B. S. Purohit, R. Hermans, K. Op de beeck; 1SINGAPORE/SG, 2Leuven/BE, European Society of Radiology, 2014.

Article: "Imaging In Pulsatile Tinnitus : When Should It Ring A Bell?" G. Bathla1, V. Chong; 1singapore/SG, 2Singapore/SG, European Society of Radiology, 2012."

Article: "Emma's Story," A Personal Account of Pulsatile Tinnitus, The British Tinnitus Association (BTA).

Article: "Pulsatile Tinnitus: Contemporary Assessment and Management," Aristides Sismanis, Current Opinion in Otolaryngology & Head & Neck Surgery: October 2011 - Volume 19 - Issue 5 - p 348357 doi: 10.1097/MOO.0b013e3283493fd8, Otology and neuro-otology: Edited by Myles L. Pensak.

Article: "Temporal Bone: Vascular Tinnitus," William W.M. Lo and M. Marcel Maya, Vascular, pp.1361-1374, 2003.

Article: "Diagnostic Clues in Pulsatile Tinnitus (Somatosounds)," Carlos Herraiza and José Miguel Aparicioa, Unidad de Acúfenos; Instituto ORL Antolí-Candela, Madrid, Spain; Unidad de Otorrinolaringología, Fundación Hospital Alcorcón, Madrid, Spain; Otorrinolaringología, Hospital Quirón, Madrid, Spain, Acta Otorrinolaringol Esp. 2007;58(9):426-33. This is a link to the article abstract.

Article: "How I Struggled with (PULSATILE) Tinnitus," The Story of Actor Graham Cole, Daily Mail Online, January 10, 2007.

Article: "I Got Lifesaving OP for Whooshing Thanks to US Help," David Powell, Daily Post UK, DPW West, Feb 19, 2013.

Article: "Vital Signs: An Unwelcome Ringing," by Dr. Christopher Linstrom, Discover Magazine, April 2010. (About a cured patient with pulsatile tinnitus symptoms!)

Article: "Tinnitus Highlights Poor Doctor Patient Communication," Martin Young, MBChB, FCS(SA), Diagnosis and Treatment, KevinMd.Com, November 2010.

Article: "Pulsatile Tinnitus: Recent Advances in Diagnosis," Aristides Sismanis MD, Wendy R. K. Smoker, MD, The Laryngoscope, Volume 104, Issue 6, pages 681-688, June 1994. ABSTRACT (Summary)

Article: "Neuroradiologic Assessment of Pulsatile Tinnitus," Department of Otolaryngology Head and Neck Surgery Loyola University Medical Center, Maywood, IL: Dr Kircher and Dr Leonetti; Department of Otolaryngology-Head and Neck Surgery Henry Ford Health System, Detroit, MI: Dr Standring; Presented at the Annual Meeting of the American Academy of Otolaryngology-Head Neck Surgery, Chicago, IL. Sept. 22-24, 2008. (CLICKING THIS LINK WILL DOWNLOAD THE PDF FILE)

Article: "Imaging of Tinnitus: A Review," Jane L. Weissman, MD and Barry E. Hirsch, MD, Radiology, August 2000.

Article: "Imaging in Pulsatile Tinnitus," G. Madania and S.E.J. Connor, Clinical Radiology, Volume 64, Issue 3, Pages 319-328 (March 2009).

Article: "Imaging of the Patient With Tinnitus," Mary Beth Cunnane MD, Massachusetts Eye and Ear Infirmary, December 31, 2013. (NEW! Mentions Whooshers.com and PULSATILE tinnitus as well.)

Article: "Imaging of Pulsatile Tinnitus: A Review of 74 Patients," Guner Sonmez, C Cinar Basekim, Ersin Ozturk, Atilla Gungor, Esref Kizilkaya, Clinical Imaging, Volume 31, Issue 2, Pages 102-108 (March 2007). (This is an abstract/summary-you have to pay to see the article in its entirety)

Article: "Pulsatile Tinnitus: A Review of 84 Patients," Daniel Waldvogel, Heinrich P. Mattle, Matthias Sturzenegger and Gerhard Schroth, Journal of Neurology, Volume 245, Number 3, 137-142, DOI: 10.1007/s004150050193, November 12, 1997.

Article: "Role of Angiography in the Evaluation of Patients With Pulsatile Tinnitus," Edward J. Shin, MD; Anil K. Lalwani, MD; Christopher F. Dowd, MD, Laryngoscope 110: November 2000. (PDF FILE)

Article: "Angioplasty and Stenting for Intractable Pulsatile Tinnitus Caused by Dural Venous Sinus Stenosis: A Case Series Report," Li Baomin, Shi Yongbing, and Cao Xiangyu, Dept of Neurosurgery, Chinese PLA General Hospital, Beijing, Otol Neurotol. 35.366-370. Dec 2014.

Article: "CT Angiography as a Screening Tool for Dural Arteriovenous Fistula in Patients with Pulsatile Tinnitus: Feasibility and Test Characteristics," J. Narvid, H.M. Do, N.H. Blevins and N.J. Fishbein, American Journal of Neuroradiology 32:446-453, March 2011.

Article: "Brain Dural Arteriovenous Fistula (BDAVF)," Patient Information, www.NeuroAngio.org

Article: "Usefulness of C-Arm Cone-Beam Computed Tomography in Endovascular Treatment of Traumatic Carotid Cavernous Fistulas: A Technical Case Report," Sato, Kenichi MD, PhD; Matsumoto, Yasushi MD; Kondo, Ryushi MD, PhD; Tominaga, Teiji MD, PhD, Neurosurgery: August 2010 - Volume 67 - Issue 2 - p 467470.

Article (Abstract): "A Convenient Sonographic Technique for Diagnosis of Pulsatile Tinnitus Induced by a High Jugular Bulb," The American Institute of Ultrasound in Medicine, Minoru Nakagawa, MD, Norimitsu Miyachi, MLT and Kenjiro Fujiwara, MD, Department of Neurosurgery (M.N., K.F.) and Clinical Laboratory (N.M.), Kosei General Hospital, Hiroshima, Japan, J Ultrasound Med 27:139-140 0278-4297, 2008.

Article: "Surgical Treatment of the High Jugular Bulb in Patients with Ménières Disease and Pulsatile Tinnitus," V. Couloigner, A. Bozorg Grayeli, D. Bouccara, N. Julien and O. Sterkers, European Archives of Oto-Rhino-Laryngology Volume 256, Number 5, 224-229, DOI: 10.1007/s004050050146 (ABSTRACT)

Article: "Brain AVM," (arteriovenous malformation), MayoClinic.com

Article: "Chiari Malformation," MayoClinic.com

Article: "Ménière's Disease," National Institute on Deafness and Other Communication Disorders (NIDCD)

Article: "TMJ Disorders," MayoClinic.com

Article: "Anemia," American Society of Hematology, Hemotology.org

Article: "Pseudotumor Cerebri," (also called Benign Intracranial Hypertension) MayoClinic.com

Article: "Pulse-Synchronous Tinnitus," The Intracranial Hypertension Research Foundation

Article: "Coarctation of the Aorta," MayoClinic.com

Article: "Man Cured of Hearing His Eyeballs Move," www.bbc.co.uk, July 27, 2011. Superior Canal Dehiscence Syndrome (SCDS)

Article: "Diagnosis and Cure of Venous Hum Tinnitus," Laryngoscope, Chandler JR, 93(7):892-5, July 1983.

Article: (Abstract) "Sinus Wall Reconstruction for Sigmoid Sinus Diverticulum and Dehiscence: A Standardized Surgical Procedure for a Range of Radiographic Findings," Dr. DJ Eisenman, Department of Otorhinolaryngology - Head & Neck Surgery, University of Maryland School of Medicine, Baltimore, Maryland; Otology Neurotology, 32(7):1116-9; September 2011.

Article: (Abstract) "Awake Embolization of Sigmoid Sinus Diverticulum Causing Pulsatile Tinnitus: Simultaneous Confirmative Diagnosis and Treatment," Park YH, Kwon HJ, Department of Otolaryngology-Head and Neck Surgery, Chungnam National University School of Medicine, Daejeon, Republic of Korea, Interv Neuroradiol. 2011 Sep;17(3):376-9. Epub 2011 Oct 17. (NEW!)

Article: "A New Therapeutic Procedure for Treatment of Objective Venous Pulsatile Tinnitus," Sanchez TG, Murao M, Medeiros HRT, Kii M, Bento RF, Caldas JG, et al. Int Tinnitus J. 2002;8(1):54-57.

Article: "Glomus Tympanicum," The New England Journal of Medicine, Volume 362:e66, Number 22, June 3, 2010.

Article: "Resolution of Pulsatile Tinnitus Following an Upper Mediastinal Lymph Node Resection," Wang YZ, Boudreaux JP, Campeau RJ, Woltering EA, South Med J. 2010 Apr;103(4):374-7.

Article: (Abstract) "Dissection of the Internal Carotid Artery After SCUBA-Diving: A Case Report and Review of the Literature," Franz Hafner, MD,* Thomas Gary, MD,* Froehlich Harald, MD,* Ernst Pilger,* Reinhard Groell, PD,w and Marianne, Brodmann* "Neurologist. 17(2):79-82, March 2011. (NEW!)

Article: "Carotid-Cavernous Sinus Fistula," Bobby S. Korn, M.D., Ph.D., and Kang Zhang, M.D., Ph.D., N Engl J Med 2011; 364:e15, February, 24, 2011. (WARNING: GRAPHIC IMAGES)

Article: "Pulsatile Tinnitus Cured by Mastoidectomy," Duvillard C, Ballester M, Redon E, Romanet P., Department of Otolaryngology-Head and Neck Surgery, Hôpital Général, Dijon, France, Ann Otol Rhinol Laryngol, September 2004.

Article: "Pulsatile Tinnitus: A Symptom of Chronic Subclavian Artery Occlusion," Marcio Francisco Lehmann, Charbel Mounayer, Goetz Benndorf, Michel Piotin, and Jacques Moret, AJNR Am J Neuroradiol 26:19601963, September 2005 (PDF).

Article: "Carotid Endarterectomy Relieves Pulsatile Tinnitus Associated with Severe Ipsilateral Carotid Stenosis," J Kirkby-Bott, H.H Gibbs, European Journal of Vascular & Endovascular Surgery, Volume 27, Issue 6, Pages 651-653, June 2004.

Article: "MR Angiography Imaging of Absence Vertebral Artery Causing of Pulsatile Tinnitus: A Case Report," *Mehmet Cudi Tuncer; **Yekta Helbest Akgül & *Özlen Karabulut,* Department of Anatomy, Faculty of Dicle University, 21280, Diyarbak¹r, Turkey.** Department of Otorhinolaryngology, Özel Diyarbakr Hospital, 21100, Diyarbakr, Turkey, International Journal of Morphology, v.28 n.2 Temuco Jun. 2010."

Article: "Endovascular Treatment of Sigmoid Sinus Aneurysm Presenting as Devastating Pulsatile Tinnitus. A Case Report and Review of Literature." Mehanna R, Shaltoni H. Morsi H, Mawad M., Interv Neuroradiol. 2010 Dec;16(4):451-4. Epub 2010 Dec 17.

"Pulsatile Tinnitus Caused by an Aneurysm of the Transverse-Sigmoid Sinus: A New Case Report and Review of Literature," Lenck S, Mosimann PJ, Labeyrie MA, Houdart E., Department of Neuroradiology, hôpital Lariboisière, 2, rue Ambroise-Paré, 75010 Paris, France, J Neuroradiol. 2012 Oct;39(4):276-9. doi: 10.1016/j.neurad.2012.02.001. Epub 2012 Sep 29. (NEW!)

Article: "Intractable Tinnitus and Sensorineural Deafness Cured by Surgical Correction of Coarctation of Aorta," S. Rathinam, A.M. Pettigrew, J.C.S. Pollack, Interactive Cardiovascular and Thoracic Surgery 3:431-433 (2004).

Article: "Pulsatile Tinnitus," Don McFerran FRCS Consultant Otolaryngologist Essex County Hospital, Colchester, British Tinnitus Association, October 2007.

Article: "Pulsatile Tinnitus and Dural Arteriovenous Malformation (Dural AVM)," G. A. J. Morrison, The Journal of Laryngology & Otology (1989), 103:1073-1075 Cambridge University Press (ABSTRACT).

Article: "Medical Mystery: Giving Birth Didn't Ease a Woman's Dangerous Hypertenstion," Sandra G. Boodman, The Washington Post, October 17, 2011.

Article: "That Noise Wasn't Just Tinnitus," Sandra G. Boodman, Special to The Washington Post, July 7, 2009

Article: "What's That Noise In Her?" H. Lee Kagan, Discovery Magazine, January 2006. (About a patient with arteriovenous malformation (AVM) and her doctor whose patience and persistence paid off).

Article: "The 'Rare' Disease That Isn't," Thomas M. Burton, The Wall Street Journal, June 27, 2009

Article: "Diseases and Conditions/ Fibromuscular Dysplasia (FMD)," Cleveland Clinic. Lists symptoms, details, treatments, and resources including Whooshers.com.

Article: Unraveling Pulsatile Tinnitus in FMD: A Report of the United States Registry For Fibromuscular Dysplasia."

Video: "A Rare Disease That May Be Underdiagnosed," Thomas M. Burton, June 26, 2009 (Hear an example of a whooshing sound in this short video)

Whooshers.com Pulsatile Tinnitus Sounds (Real Ones Recorded by Real Whooshers!)

Audio: Having trouble describing the sound you hear to others? Listen to this collection of sounds that whoosh and see if you can find a match to yours! Demonstrations: Heart Sounds & Murmurs, from the University of Washington Department of Medicine

Audio: FREE White Noise from White Noise MP3s.com

Audio: SimplyNoise.com

Whooshers.com Review: SleepPhones- Soft, comfortable headphones to help mask the whoosh for a good night's sleep.

Replace "ringing" with "whooshing," and here it is: our theme song.