Whooshing sounds / sensations in my head - Vasculitis or Carotid Artery problems - it’s not Pulsatile Tinnitus

[Pennyb65]

Hi there,

I’m new to the group.

I’ve been a tinnitus suffer for 56 years now and managed to live with it even though it has increased in noise level quite considerably in the last 3 years, necessitating me listening to meditation music through headphones to get to sleep. I’m not on any medication, have normal blood pressure for my age (65) and have been pretty fit and active my entire life, playing netball, doing gymnastics, cycling, walking running and going to the gym.

In the last 12 months I have had a series of incidences to add to the incessant noises in my head. In March, whilst having a neck massage in Bali, the masseur lifted and turned my head to the right and I immediately got a dizzy spell. It subsided when she turned my head back to the centre. I then experienced this for 5 or so days and periodically for 5-7 days each time I lay on my right side or looked up at a right angle. On occasions, it would come when I was lying flat on my back when doing yoga. It would then subside and around 2 weeks later, it would come back again.

What happened some 2 months later, the dizzy spells just stopped and I started to experience sounds and sensations of ‘bubbles’ or pulsating in the upper part of my neck and lower/middle part of my skull. I could hear the sound in both ears on top of my tinnitus high pitched noises and the pulsating feeling in the upper part of my neck right up to the back middle part of my skull.

I went to my GP and he said that the whooshing noises were probably Pulsatile Tinnitus and referred me to a ENT Specialist. I wasn’t going to wait months on the NHS so I went private.

The first ENT specialist didn’t appear very thorough in his examination and diagnosis and said that he could not hear any sounds around my ears when he used his stethascope. When I expressed concern that if this was the case, what was this ‘whooshing’ sound and feeling, so he agreed I have a CT Scan. He looked at the scan results and said that all blood vessels around the inner ears looked normal. The noises and feelings hadn’t dissipated. I wanted a 2nd opinion.

So onto the 2nd ENT Specialist. She was more thorough and used a camera to look up my nostrils, in my ears, my throat, felt all round my neck for lumps and found nothing. She said it couldn’t be Pulsatile Tinnitus as I could hear the noises in both ears. She then suggested 3 blood tests for Thyroid function, full blood count and coagulation screen and all these came back as normal. She even said she’d passed my initial CT scan and report to a 2nd Radiologist, who specialised in ear, nose and throat radiology and he confirmed no abnormalities in relation to my symptom of pulsatile tinnitus.

Fine, but I still had this pulsating noise/feelings in my head and neck. Another thing that I couldn’t do from a very early stage, was sleep lying flat else the pressure would build up in my head and I’d get headaches and sometimes pain behind my right eye. So for 5 months have been sleeping upright. I’m now down to sleeping on 2 high pillows but still can only sleep on my back and not my right side as that makes the noises and pressure worse.

Reading the comments about similar symptoms, and suggesting of what other route I could take, do you think I should get the possibility of this being Vasculitis checked out, as mentioned in a recent thread. Perhaps I should insist I have someone listen to my carotid artery too?

Would welcome anyone’s comments on this.

[Canygirl61]

Hi Pennyb65,

Has anyone suggested your dizziness might be Benign Paroxysmal Positional Vertigo (BPPV)?

vestibular.org/understandin...

We humans are so complicated. My journey started with dizziness (BPPV) and tinnitus, then chronic headache. My dizziness became a constant feeling of being off balance (actually falling down at times). I had lots of testing for vestibular dysfunction at a top institution in Pittsburgh, which confirmed damaged vestibular system and one-sided low level hearing loss. I was diagnosed as having Vestibular Migraine. My head pain was/is mostly focused in the temples (with tenderness), but also had/has migrated to facial pain. Last summer, I developed a clicking sound in my right ear-- kind of like a bug. I've been told it is likely a spasm of one or both muscles deep in the ear.

Meanwhile, despite being seemingly healthy—hiking, biking, etc.— I tested positive for ANCA, CRP, ANA, and other markers for autoimmune disease. So, all the issues mentioned above, may well be autoimmune related. I have many other annoying ailments (too long to list here), and am going from doctor to doctor, and test to test, while they try to diagnose me. I am on a very low dose of prednisone, which has reduced the head pain and dizziness, though definitely not cured. After three years, this reduction in symptoms is a welcome reprieve.

All the best,

Canygirl61

P.S., I just had an ultrasound of my carotid arteries, and am awaiting results.

[Pennyb65 in reply to Canygirl61]

Hi there Canygirl61 thanks for your response. My dizzy spells/vertigo have not recurred now for over 6 months and my Physio in Sydney whom I emailed when I first experienced ithis said the same as you and a method to get myself rebalanced. in the end my GP in the UK told me that it was probably the crystals in my right inner ear had adjust back to normal.

My headaches are very few and far between these days and during the day I hardly notice anything different. It’s when I lie flat and also turn to lie on my right side that it can get slightly louder and I feel minor pressure.

I wont resort to medications as I am a greater believer that pharmaceuticals don’t cure disease but maintain it at a bearable level. To cure would be to effect profits.

I will ask my GP on a possible autoimmune related problem but I’ve contacted him now to ask his advice

Thank you so much for your advice and hope you can get relief and eventual re co Rey to good health I will keep you informed of my progress Take care

[bluemoon70]

Hi Pennyb65,

I agree with Canygirl6; all people of a certain age should have their carotid arteries checked anyway; if I am not mistaken, the state of the art test is an ultrasound color duplex doppler; I just had it done 2 days ago b/c of temporary loss of vision In my left eye while calmly watching TV which can happen with vasculitis; or specifically giant cell arteritis;, if the optic or otic nerves become excessively inflamed and irritated, blood and oxygen flow to those nerves can be compromised causing visual and auditory problems. In my case, a neuro-ophthalmologist ordered the tests after regular eye exam, field of vision tests and photos of the back of the eye. I had to arrange that myself. Results still pending. I did hear the big whooshing sound during the carotid test.

The eye specialist also recommended a cardiovascular evaluation, suggesting that a small clot could have broken off a large vessel in the chest or around the heart and traveled to the brain. Giant cell arteritis can occur anywhere in the body where there are large vessels.

My rheumatologist's response was to start once a week methotrexate which ironically has given me tinnitus, but is a known side effect of methotrexate;(I never had tinnitus before); it doesn't bother me much; sounds like soft sound of crickets on a summer night. She also lowered prednisone by 4 mg.until early July.

However, your blood should be tested for ANCA antibodies if not already done so, and yes, agitate for the duplex dopplers of the carotid s and auditory nerves. I am not sure a CT scan was the best imaging option for your symptoms; seems like you need an MPA (MRI of vascular system in head) or an arterio/angiogram.

Do as much of your own research as you can so you can argue for the diagnostics you think you need because many, many doctors simply do not know or have experience with these rare disorders.

One last thought, you may want to have your ears professionally cleared of wax build up; I 'm not sure if you are in the UK, but in the States an urgi-center or nurse practitioner will do that. Wax build up and water trapped in ear can cause weird feelings in your head and with your hearing.

Good luck!

[Pennyb65 in reply to bluemoon70]

Hi blue moon70

No loss of vision to-date just pressure now and again at the back of either left or right eye accompanied with a headache but I’ve had 4-5 of those in the 9 months of this developing. Had my eyes looked at last Feb/Match by ophthalmologist due to getting a ‘floater’ appear in my right eye but over time, that has almost dissipated now. This was well before I started to get the pulsating sounds/sensations I’m having now .

I thought a CT scan was really focusing on looking for tumors or vein restrictions around the inner ears as I had a dye injected into my veins I wish I had an MRA now . I will definitely continue my research and am very grateful for this feedback

I’ll keep all updated on my progress Wishing you progress and a healthy outlook

[Hidden]

Hi there. I have Sjögren’s and probable ANCA negative vasculitis. I’ve had Tinnitus for a few years and, more recently, very similar Pulsatile Tinnitus to yours. I don’t have other term to describe it than Pulsatile Tinnitus although it seems to be in both ears.

I have some hearing loss and was diagnosed when younger with BPV and then with Bells Palsy and other inner ear problems. A locum doctor recently told me that I had Labyrinthitis. My GP says this wouldn’t recur and suspects Menieres or another Eustachian Tube Dysfunction that comes and goes.

I see an ENT in 2 weeks to test. It’s complicated by the fact I have a severe neuropathy so my balance is compromised by this too. I didn’t know that vasculitis was associated with Tinnitus but I did have a carotid US a few years ago which showed quite a lot of plaque and mild disease.

My mum died prematurely of severe atherosclerosis so it’s a worry for me but presently my doctors seem more focussed on my brain and kidneys. Like you I sleep with 2 deep pillows and lie on my back due to annoying insect sound on pillow or duvet cover resting on my carotids. At first I thought it was my eye blinking or twitching. Sometimes it’s whooshing or even hammering if I’m wearing my Tinnitus aids.

Usually vasculitis and other rheumatic diseases present systemically so you would probably have multiple symptoms and blood tests would probably show high inflammation. Have you had your ESR/ PV and CRP tested recently and if so were they elevated?

[RiviS7]

You may want to have scans looking for fibromuscular dysplasia.

It is another disease process of the arteries and veins but not considered autoimmune.

You would need to be scanned by doctors and radiologists knowledgeable about it and who know what to look for.

[Adventurer53 in reply to RiviS7]

I have fibromuscular dysplasia or FMD. I have very loud whooshing noises in my left ear/head on and off. I have this in both of my aortic artery‘s. I basically try to ignore the noise but I routinely have scans to check those arteries about the progress of the disease.

[RiviS7]

my.clevelandclinic.org/depa...

[danerd1960]

I had dizzy spells off & on for 3 months- my ENT laid me on an exam table & ran me through some specific excercises to move the crystals in my ears out of the tunnel & it worked- don’t know if it helps you!

[Hidden]

I have seen quite a few posts re. having to stay upright to sleep. I don't quite remember in what context I was reading, but wondered if anyone with V does suffer from this particular sleep issue?

I hope the OP will update us soon.