Flying with Pulsatile Tinnitus

Discussion in 'Support' started by GiGi67, Jun 29, 2019.

    1. GiGi67
      Sick

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Life? Who knows? Also have 24/7 pulsatile tinnitus, L ear.
      I've had pulsatile tinnitus (PT) 24/7/365 in my left ear since 2015, soon after I was diagnosed with DVT and PE (blood clots in legs and lungs) and was in heart failure. Not long after that I started having pain in my left eye, sinus, and jaw. Neuro did an MRI and found what was thought to be a petrous apex lesion but further testing kinda left all the docs telling me, "We're not sure but it's a "leave it alone lesion." I've had all kinds of diagnostic tests on head, neck and inner ear: ultrasound, MRI/MRA, CT, you name it. I see a neurotologist. That little tiny "marble" as I call it has not changed with repeat imaging. It's not cystic, not a tumor, not an aneurysm. It could be fat. Who knows? Nobody. Nowadays my clots are gone, heart's back to normal. My whooshing is constant, timed right along with my heart rate. I also have intermittent ringing tinnitus in both ears. I have endolymphatic hydrops and hearing loss in the left ear. I also have a "thin bone" in my inner ear on the left that doc says could make me be hearing the whooshing sound... but wouldn't I have always heard it? I dunno. I've seen a neuro-ophthalmologist and was told I don't have IIH, there's no papilledema. I do need to lose weight but I'm not hypertensive, no diabetes. I do struggle with anemia, my H/H is normal but my latest ferritin level is 4 which is super low. Occasionally I CAN reduce the noise level of the PT if I move my neck a certain way but the neurotologist didn't seem interested when I told him that.

      Anyway, my question: who here has flown with pulsatile tinnitus? I am terrified. I'm on a blood thinner and I have visions of my brain exploding at 35000 feet. I saw the neurotologist today, he said I would be fine, I'm cleared now to fly, just use some Afrin ahead of time... but I really would like to hear from someone who's flown with this. I have a lot of travel upcoming - cross country and international - and I'm SO nervous.

      Thanks to anyone who can share their flying experiences with unexplained pulsatile tinnitus.
       
    2. Alue
      No Mood

      Alue Member Hall of Fame

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      I can't speak for pulsatile tinnitus specifically (I've only experienced it for short periods), but I do have tinnitus and hyperacusis and fly frequently. The biggest two concerns are noise level and equalizing you ears with the change in cabin pressure. There are things you can do to mitigate these problems. For equalizing pseudoephedrine, afrin, and knowing how to equalize your ears helps. For the noise level: the type of plane, where you sit, and hearing protection helps.

      As for your other medical conditions, if your neurotologist says you are okay to fly I think you'll be okay.
       
    3. M.Ryan

      M.Ryan Member

      Tinnitus Since:
      12/18
      Cause of Tinnitus:
      Unknown
      Gigi, this is my question as well. I have bilateral PT since December, 24/7. It's gotten worse. Every time I stand up my head fills and pounds. Then I have a high pitched squeal along with whooshing heartbeat sound. Had all the tests EEG, EKG, MRI, MRA, eye pressure testing, every hearing test, and been pretty much told everything's normal. I have 2 lesions on brain MRI, one radiologist suggested it could be mild NPH. Still have to see allergist, chiropractor, acupuncture, etc... exploring all avenues. I have a place in Florida that I'm going to need to get to at some point and I have exact same concerns about flying. Let me know how it goes for you!
       
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    4. AUTHOR
      AUTHOR
      GiGi67
      Sick

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Life? Who knows? Also have 24/7 pulsatile tinnitus, L ear.
      Ugh, the whole 24/7 thing can really be trying at times. It's been a few years for me now and some days I don't think about it and other days it interferes with everything. Not having a WHY makes it worse for me. I've been an RN since 1993 and I do like a cause to go with the effect! I'm not sure why but the neurotologist's green light rang hollow to me and I was not reassured. Seeing as I have to fly to do the whole "living life" thing, I've got to give it a try. I probably won't be flying until sometime in late August/early September and my husband's coming with me - we're going to take a long weekend to get some value out of my "practice" flight - but it's going to take some massive anxiolytics to get me on board, at least on the outbound flight! I will follow up here with my experience.

      I also have ringing tinnitus in both ears - had it before the PT - and have flown with that and did well with equalizing, noise reduction, etc, but this PT with its unknown cause is so different for me. I am hoping someone with pulsatile tinnitus will weigh in with their flying experience before I take off!
       
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    5. Laurie1961
      No Mood

      Laurie1961 Member

      Tinnitus Since:
      2008
      Cause of Tinnitus:
      dental work
      Check out Austin Goh's YouTube video on how to clear the eustachian tube -- he has the simplest trick but it really works! My ears hadn't popped for at least 8 years. I began doing Austin's exercise as silly as it seemed and since I heard a movement the first time like the start of a pop noise I continued, faithfully, 2x a day right after brushing teeth The improvement is miraculous! I noticed improvement in days - and more after a few weeks. Now I do it as a preventative. My ears, by opening my mouth, now can be made to pop sort of, like the good ole days. Clogged eustachian tubes can be painful when flying.

      Eustachian Tube Dysfunction: Unclog your ear...
       
    6. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      @GiGi67 I have PT as well. Everything that you mentioned in first post and in order of occurrence is often found with those that develop PT, but my feeling is that they are not primary for you. I also agree with you that certain mentions probably have no involvement. One mention is IIH and with even being young, female, with maybe some weight, I doubt that's your problem. There are three areas of close relation; eyes, certain medications such as vitamin A, steroids or just brief upsetting moments of hypertension.

      What you did mention that probably does have input is sinus, jaw and reducing noise by turning neck a certain way. This would indicate a vein or artery within the neck that's slow in return blood flow. Most likely it's the internal jugular vein, but it could be the vertebral artery if you ever had a hypertension neck injury. This could be just caused by lifting neck and holding it in that position for several minutes from a sitting or laying back position. If it was a twisted vein it would have shown up on your testing, but the vertebral artery which wines thru the C spine is most difficult to notice.

      None of your tests would confirm the internal jugular vein except the ultrasound, but the doppler needs to have repeated movement going to the ears. A simple X Ray is another important test to note joint space narrowing, sclerosis and most important is osteophyte formation in the medium atlantoaxial joint.

      Your involvement may be the internal jugular vein with sternocleidomastoid influence to your sinuses and C1 influence to the jaw as all often goes hand in hand. Any hypertension or stress can then trigger PT. A question to ask is did you have any single long extended dental care or operation where your neck was hyperextending? Another question is your PT a hum? If so, I will give you links to articles that describe my thoughts. I think that you are safe to fly and travel.
       
    7. AUTHOR
      AUTHOR
      GiGi67
      Sick

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Life? Who knows? Also have 24/7 pulsatile tinnitus, L ear.
      First, THANK YOU for calling me young, LOL! I am almost 52 so I will take it. To address all you posted, in regard to the vascular aspects, I would think I've had enough testing to tell if there's anything up with the internal jugular vein? I will email my friend who's the tech that did the initial U/S. I told my vascular surgeon about the PT and she ordered the carotid u/s and he (my friend) was pretty thorough but I want to make sure nothing's missed. I also do recall seeing images of all the vessels in my head from CT/CTA, MRI/MRA, etc. Nothing seemed amiss? I don't recall if my neck was done so your info re: the possible vertebral artery involvement is something I will have to check out.

      I've never had a hyperextension neck injury that I recall but in 2007 I did have a bilateral submandibular sialadenectomy (due to stones in the ducts) but I'm not sure of the OR positioning for that. I would imagine my head was tilted back as the incisions are across the front of my neck. I was in the OR for about two hours, I think. I don't recall specifically having PT after the surgery. Thinking back, I do know I had intermittent PT for some time before it became 24/7 in 2015, but not back in 2007, and that seems a long stretch of time to have had an impact now, yes? I have noticed new onset intermittent PT in my right ear as well, but it's very infrequent. I've been an RN for a long time and my career ended due to a debilitating hip injury that resulted in surgery, and I also do have occasional muscle pain in my neck and upper back. I have enthesophytes in multiple spots throughout my pelvis and I do have mild arthritis in my lower and mid spine as noted secondarily in a recent abd/pelvic CT w/ IV contrast, so I would imagine it continues up into my upper spine and neck. My neck is often very stiff and does give the occasional crackle when I turn it, to the point that I am mindful about how quickly I turn my head, etc. Osteophytes wouldn't surprise me.

      The neurotologist seems to think my PT is caused by thinning bone in my inner ear and that, combined with hearing loss in the left ear, is allowing me to hear the blood flow through a vessel that lies near that part of my ear. He did offer a surgery that would reline the inner ear bone but if the PT is not something that's potentially fatal, I'd rather whoosh 24/7 than go under the knife, esp. since I have a history of DVT and PE blood clots and I'm a lifer on anticoagulant medication.

      As to the sound of my PT, it's synchronous with my heart, it's 24/7. Due to post-thrombotic syndrome from my blood clots, I get doppler studies done of my legs every six months, and my PT mostly sounds like that, or maybe like a fetal heart monitor if you've ever heard one of those. My bilateral ringing tinnitus is a high-pitched squeal/hum that is low level in terms of volume so it's barely noticeable but the PT is more like that whoosh of a doppler. It varies in noise level, I can change the intensity of the pitch from high to low with a very specific move - turn my head to the right then tightly tuck my chin to my shoulder - and I can make it mostly go quiet if I clench my teeth together really hard, but in both instances it only lasts for a few seconds and goes back to its usual noise level even though my teeth remain clenched or my chin tucked. While typing, I've been sitting here moving around and pressing this and that and I am able to make changes in the sound level and the pitch, so... I dunno.

      Anyway... bottom line, the combo of PT of unknown cause and being anticoagulated, then purposely subjecting myself to a pressurized cabin and zooming through the air, is very disconcerting. I need to feel safe if I utilize airplane travel and my anxiety is not letting that happen despite reassurances from the doctor. I'm just going to have to say, "F*ck it!" and climb on a plane. A successful "I'm not stroked out or dead" round trip flight is the only way this will resolve for me mentally.

      Thanks for your very specific thoughts, they are appreciated, and I would very much like links if you have some to share.
       
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    8. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      @GiGi67 I thank you.

      When I research causes for somatic tinnitus or PT, or even something like what causes ear fulness or pain, most articles are genetic and don't contain a full list. I will stubble on added causes within specific research. One area of specifics is finding what problems can be associated to salvia glands. In order words, I will be reading a detailed article on saliva glands and buried within the article, radiation from multiple CTs will be mentioned.

      Also mentioned in advanced study is the degree efficiently that any radiological test may have with a specific narrowed condition. With PT influence, the numbers are all over the place. I had CTs, MRIs of all natures and other advanced tests for PT and they were not completely helpful. Simple X Rays did show degenerative degree of cervical spine and problems. Other tests showed a cut nerve within the oral cavity. I had 5 ultrasounds over a period of months for PT cause and nothing showed on the first four that was of concern other than thyroid. It was the fifth exam that did spot a concern. The radiologist then compared this ultrasound to my X Rays and was able to determine cause of somatic tinnitus and PT. I had muscle spasms causing loss of normal lordosis that caused vein and artery problems. I won't go into all details because I would need to write a book, but cause was from lifting and turning my neck off a dental headrest. I found same reason hidden in an article on dizziness which I no longer have.

      Within article: Araz Server et al (2018) reported reduced flow in the ipsilateral vertebral artery when the head was both hyperextended and rotated. Perhaps a position mainly encountered in dental offices ?
      This article may also be of interest to you.
      https://www.dizziness-and-balance.com/disorders/central/cervical/cervical.html

      This article may be of interest.
      https://www.centrallakesclinic.biz/cardiology/the-venous-hum.html

      I think that I have several articles and case studies from medical journals that can relate to your situation. I have spent a lifetime during bio research for employment related purposes. I will view your last post in detail and research.
       
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    9. lynn mclean

      lynn mclean Member

      Tinnitus Since:
      2016
      Cause of Tinnitus:
      Pulsatile and reason unknown
      I have had almost 24/7 pulsatile tinnitus left ear since 2016. I have had a number of investigations intermittently, when I get fed up an whine, and a number of other preceding mostly neuro symptoms with the vain hope for a unifying diagnosis to no avail! Also working in a medical field I am frustrated. We summer in a Lyme endemic area which always raises that pandora’s box. I lost my sense of smell last year, we blamed too many sinusitis in a row.

      I notice my PT is less if a rotate my head left, more if I turn right, strain, exert myself etc. An unusual observation is mine will lessen after air travel - no idea if that generalizes- on one occasion I had a bad migraine start during a flight, off neck pain, when we landed I eventually noticed hey -no or almost no pulsatile tinnitus for a month. Then it returned for a year and here again another recent flight, and I am now a week in to it with it being barely audible. I don’t recall any headache this last time.

      I certainly get migraine headaches, but also at this point told while they can not rule out IIH, there is not enough to promote more risk of invasive tests —-yet. I can see this will be a long haul. Goose chase and red herrings.
       
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    10. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      04/2011
      Cause of Tinnitus:
      Syringing + Somatic tinnitus from dental work
      @lynn mclean
      It could be pressure coming from the right sternocleidomastoid muscle - upper third. Several muscles blocks the SCM from the internal jugular and carotid. If so, then treatment of the SCM will take pressure off those muscles and then the internal jugular and carotid. Sometime treatment is very light vibration to the SCM and other muscles of neck. Maybe your plane vibrated down the runway.
       
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    11. AUTHOR
      AUTHOR
      GiGi67
      Sick

      GiGi67 Member

      Tinnitus Since:
      2014
      Cause of Tinnitus:
      Life? Who knows? Also have 24/7 pulsatile tinnitus, L ear.
      So you've flown, then? That is somewhat reassuring to me. I've scheduled a short flight from New Orleans to Austin for the second weekend in November. My husband and I are going to (hopefully) enjoy a day there before we fly back home. I've got a longer flight scheduled in December, from NOLA to Medford, Oregon and then back home again. That will be two flights each way, each one nearly three hours, but I think successfully flying in November will take away a lot of my fear. Meanwhile, I'm steadily whooshing away here, LOL!

      I'll post how it goes for whoever's inclined to read about it... ;-)
       
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    12. GJSCAR

      GJSCAR Member

      Tinnitus Since:
      9/2017
      Cause of Tinnitus:
      Unknown
      I’ve had PT diagnosed in September 2017. I took my first flight since in September 2019. I was with my family, took a red eye and slept the entire flight! If PT was active I didn’t know it. Same thing coming back. Caught a late flight, went to sleep.
       
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    13. Jamehol

      Jamehol Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      Pulsatile intermittent
      Did you end up flying?
       
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