New Pulsatile Tinnitus and Sound Distortion — Recommendations?

[Kolby]

Hello, I am trying not to lose hope and desperate for help!

I think I have probably had mild regular tinnitus for a long time, and have lived with it without problems.

Recently I started noticing a heartbeat sound in my left ear when in bed at night and I didn't think too much of it.

When it persisted night after night I looked it up and found it could be pulsatile tinnitus. Even the pulsing was fairly tolerable though it was annoying.

Then maybe a week or two after the pulsatile tinnitus started, I started experiencing sound distortion in my left ear.

Certain pitches or tones sound terrible and off-key when listening to music, and people with higher pitched voices, especially children, sound distorted and robotic.

This has been terrifying. I already suffer from anxiety/depression and insomnia, and also have bruxism (teeth grinding) probably related to those things. I have also had a few bouts of vertigo over the past year that were of unknown cause.

The distortion in my ear started while I was out of town with my family and I just had to tough it out until we got home and I went into urgent care. They removed a lot of wax from my ears via syringe irrigation.

The doctor said there was some fluid behind my left ear and that it should evaporate and the tinnitus would go away. She said if it didn't improve within 24 hours to use Afrin nasal spray to try and dry out my sinuses. I have been doing that for 3 days now, and had one day where I thought things were improving, followed by the worst day yet. The doctor didn't specify how long it might take to resolve.

After reading around on these forums I'm now rather concerned that it wont! I've sent a message to the doctor asking how to proceed.

Should I ask for a referral to an ENT? Music and dance have been essentially my main source of therapy for depression and anxiety and the distorted sound of music is devastating and brings me to tears.

Any suggestions greatly appreciated.

 

[Scared111]

how are you feeling now? did things get better?

 

[Kolby]

Hi there, the pulsatile tinnitus is still there and louder than ever, but thank goodness the sound distortion did clear up after a few weeks. That has been a major relief, to be able to listen to music and people's voices without it sounding terrible is great and gave me hope for continued improvement. I have been waiting for my appointment with an ENT, it is coming up this Friday and I am very interested to hear what they have to say. The pulsing has gotten louder and more noticeable during the day and is terrible at night. Still not getting much sleep, but it all feels more manageable than when I had the distortion as well. I am very paranoid about it all and am having a hard time not paying attention to what I am hearing all the time. Thanks for asking and I will report back if anything changes or I find out any new information.

 

[Scared111]

Hi there, the pulsatile tinnitus is still there and louder than ever, but thank goodness the sound distortion did clear up after a few weeks. That has been a major relief, to be able to listen to music and people's voices without it sounding terrible is great and gave me hope for continued improvement. I have been waiting for my appointment with an ENT, it is coming up this Friday and I am very interested to hear what they have to say. The pulsing has gotten louder and more noticeable during the day and is terrible at night. Still not getting much sleep, but it all feels more manageable than when I had the distortion as well. I am very paranoid about it all and am having a hard time not paying attention to what I am hearing all the time. Thanks for asking and I will report back if anything changes or I find out any new information.

are you hearing a low freq whoosh whoosh sound? or a higher freq pusatile sound? they will most likely ask you to do an mri to make sure there's no neuromas or vascular problems. if nothing shows up after that, they are usually clueless as to why...

 

[Kolby]

Yes, low frequency whoosh whoosh, definitely it's my heartbeat/pulse. I also have had "regular" tinnitus on and off for years but it has been tolerable. I never would have associated this throbbing with tinnitus if I hadn't started googling. I have been trying not to get my hopes up to high for the ENT visit as so many people seem to have no solutions or resolutions...

 

[Riya]

Hi @Kolby

My PT reduced considerably after I started taking Magnesium and calcium supplements.. maybe you can check with your doctor if you can also take these supplements? Ofcourse it's never completely gone, but it's manageable. Anxiety and bruxism also might elevate it.

 

[Halsy]

Is it worse when lying down or you stress/bp is elevated? That's how mine is so far. I've anxiety kind of peaked in the last few days so I took some Lorazepam to level out and helped immensely, and as I calmed down so does the PT. There are times I wake up after an intense dream or something (maybe apnea episode?) and it is just thundering in my head - whoosh whoosh whoosh - then I start some breathing excercises and calm down and it quiets down right along with it. I find sleeping on a wedge pillow helps. If your depression/anxiety is that bad I'd strongly consider at least doing a short course of meds to help. Even 2 weeks to level you out can help immensely. I'm not a big fan of pills myself but when you're in crisis you do what you need to get through at that point in time. Good luck!

 

[Kolby]

So to update, I saw the ENT two weeks ago, hearing was fine - slightly worse in my left ear (the pulsing ear) but still within normal range. I do feel like the pulsing makes it harder to hear and can be disorienting. No fluid or anything else to speak of. They referred me for a CT angiogram, the results of which were also normal.

So now I have a referral to a neurologist, and of course there are no appointments for new patients until January.
So meanwhile, I saw my primary care doc and got a prescription for anxiety/depression meds, because, yes I feel like I'm in crisis - this ear business is pushing me to the edge of my coping skills. I will also consider calcium/magnesium... My recent blood work was normal but it probably can't hurt.

My PT seems to get louder/quieter at times but I can't tell why, it seems random. I have blood pressure that is usually on the low side. I can't tell if it gets louder when I am stressed. The PT is more noticeable when laying down but usually that's just because it is quiet. It is equally noticeable in a quiet environment. I have other "regular" tinnitus tones that may have been there before... not sure if it's just I notice more now because of the PT, but they all seem to fluctuate - sometimes the tones get loud for a minute and the PT is quieter or vice versa. Sometimes they all get suddenly loud. I do notice one of the regular tinnitus tones responds to both pushing my jaw out and pushing on my forehead (makes it louder). The PT doesn't seem affected by anything, I've tried pressing on jugular vein, other spots, nothing I can find makes it stop.

So I guess I am just waiting to see another specialist who may not have any answers... so for now I'm just working on living with the noise in my head.

 

[Halsy]

So to update, I saw the ENT two weeks ago, hearing was fine - slightly worse in my left ear (the pulsing ear) but still within normal range. I do feel like the pulsing makes it harder to hear and can be disorienting. No fluid or anything else to speak of. They referred me for a CT angiogram, the results of which were also normal.

So now I have a referral to a neurologist, and of course there are no appointments for new patients until January.
So meanwhile, I saw my primary care doc and got a prescription for anxiety/depression meds, because, yes I feel like I'm in crisis - this ear business is pushing me to the edge of my coping skills. I will also consider calcium/magnesium... My recent blood work was normal but it probably can't hurt.

My PT seems to get louder/quieter at times but I can't tell why, it seems random. I have blood pressure that is usually on the low side. I can't tell if it gets louder when I am stressed. The PT is more noticeable when laying down but usually that's just because it is quiet. It is equally noticeable in a quiet environment. I have other "regular" tinnitus tones that may have been there before... not sure if it's just I notice more now because of the PT, but they all seem to fluctuate - sometimes the tones get loud for a minute and the PT is quieter or vice versa. Sometimes they all get suddenly loud. I do notice one of the regular tinnitus tones responds to both pushing my jaw out and pushing on my forehead (makes it louder). The PT doesn't seem affected by anything, I've tried pressing on jugular vein, other spots, nothing I can find makes it stop.

So I guess I am just waiting to see another specialist who may not have any answers... so for now I'm just working on living with the noise in my head.

If it doesn't occlude - stop - with certain trigger points but gets louder than your a good candidate for MCS - Microvascular Compression Syndrome - or another neurovascular issue - I'll post some links to info to bring to the neurologist, as opposed to regular PT or somatosensory PT. Mine sounds almost identical to yours and they - the docs - are starting to feel this may be the case but I'm waiting on MRIs, sigh. The main characteristics of compression of an auditory nerve....high pitched, can be pulsatile and constant in nature, can be bilateral but is generally more unilateral or favors one side - mine is definitely on the left though I do get some general T sensation that seems bilateral at times, and it usually shows hearing loss in the upper ranges on the side affected - which is precisely what my audiometry report showed on my left ear and otherwise my hearing is perfect.

I can't modify mine - or stop it - but I can make it louder - again more of a sign of auditory nerve compression. When I yawn it gets really loud, though not if I just open my mouth no matter how much I try to open it as much as possible. Also, try putting your fingertips on the veins that run along the side of your head, usually just around the top part of your ear at the front, just a bit behind your temples. You'll know you've got it when you feel the pulse from those veins, it's very distinct. If you push in there it will likely also raise the volume of your PT. It does for me. Also if I overextend turning my head to the left or right to really strain the mastoids it'll increase in volume.

Standing up it's more tonal than pulsatile most of the time, though it definitely gets pulsatile if I stress and BP shoots up. Perfect example, almost got into a car accident the other day and with the adrenaline and pulse racing in my system it started going off like a car alarm - but perfectly in sync with my pulse. Or if I wake up from an intense dream it's the same thing, but as soon as I start breathing and calming down it goes right down with my pulse. Sometimes to points where I can barely here it or it may even stop...until I move then. It can also happen going from a standstill to a quick walk and other little odd things like that. And it's generally always pulsatile as soon as lay down, or bend over, anywhere where blood is going to your head and increasing intercranial pressure. Overall it's best in the morning and worst in the evening - 8pm onward - though I'm pretty good overall with just the odd bad day here and there - again tied to stress and diet.

Like you I was in a very bad place 8 weeks ago, but the nortripyline - 20mg a day - has helped a lot. I did use valium -2mcg - for 2 weeks just to get a handle on things and that helped a lot too. I only stopped because the nortrip works well enough for keeping me level and I really don't want a benzo addiction on top of all this. I use 1mg time-release melatonint for sleep - usually only need 2 - and 1 or 2 200mg chelated magnesium tablets. Those really mellow me out and make sleeping easy. That's a good, safe way to go.

So read up on these papers I'm linking and bring them to the neurologist. Also, ask the doc is he/she has any personal experience with PT in general or T caused by auditory nerve compression. If not, do they know any specialists - there are plenty in the US, they have some really good ones at Cornell University I understand. So if they can't isolate the problem after the first round of testing - MRI and MRV (a high contrast MRI) especially is warranted so insist on it - at least you've got someone else lined up without having to wait too long to see them. It's not unusual for things to get missed or overlooked so that's why you need to keep at it and see as many specialists as you need to see. I've seen cases where people suffered with this for years all because Dr. So-n-so didn't check this, that or the other thing. Keep records, keep everyone involved in the loop. Everything I do related to this is all shared by GP, ENT and Neurologist so everyone is on the same page.

My neurologist does have experience with this stuff and still feels that'll it'll resolve itself in my case - man, I sure hope so. So maybe I'll get lucky, and maybe you will too. If not, just make sure you work at a lifestyle change because nothing helps more than that. Quit drinking/smoking if you do, eliminate as much junk and eat as healthy as possible, lose weight as needed an exercise regularly, learn to deal with stress is this is ongoing with CBT, neurofeedback, etc.. Never forget, the body is always trying to heal itself and it can do that much easier the better you treat it. Good luck!

MCS
http://american-hearing.org/disorders/microvascular-compression-syndrome/

Imaging of Neurovascular Compression Syndromes (Look at Vestibular Paroxysmia in particular)
http://www.ajnr.org/content/37/8/1384.long

Vascular Loop Compression
http://www.jneuro.com/neurology-neu...rome-of-the-viiith-cranial-nerve.php?aid=7356

Surgical Decompression of the Eighth Nerve forTinnitus
http://www.tinnitusjournal.com/articles/surgical-decompression-of-the-eighth-nerve-for-tinnitus.pdf

 

[Halsy]

Oh yeah, I forgot to mention. The reason my neuro thinks this is temporary is that she feels it's a result of minor damage I suffered from the infection that started the whole thing. She feels it's case of neuromuscular inflammation and that it'll resolve itself over the next several months as the brain lays down new pathways for the blood vessels that broke, etc. She says in most cases this type of PT resolves itself in 6-12 months. So cross your fingers that that's what we're going through. The key is to stay as healthy as possible, diet/exercise, to help the body do this.

 

[Frédéric]

A scoping review of vestibular paroxysmia: An acute disabling clinical entity

The pathogenesis of vestibular paroxysmia (VP) is the neurovascular cross-compression of cranial nerve VIII with short episodes of vertigo as the common symptom. The exact etiological and clinical profiles of the patients with VP are uncertainly reported in literature. It is general thought that loop of the anterior inferior cerebellar artery and posterior inferior cerebellar artery (less commonly), vertebral artery, or a vein is involved in compressing cranial nerve VIII. Ephaptic neural discharges at the proximal end of cranial nerve VIII, which is covered by oligodendrocytes, are thought to be the mechanism for VP. Patients with VP often suffer from brief vertiginous attacks of several episodes in a single day, and nystagmus is seen during the vertiginous episodes. Cranial magnetic resonance imaging could reveal the arterial compression of cranial nerve VIII. The important differential diagnosis of VP includes vestibular migraine, Meniere's disease, benign paroxysmal positional vertigo, superior canal dehiscence syndrome, epileptic vertebral aura, paroxysmal brainstem attacks (in multiple sclerosis or after brainstem stroke), transient ischemic attacks and panic attacks. The vertiginous attacks can be ceased by administration of a low dose of carbamazepine. Carbamazepine or oxcarbazepine, even in low doses, can be efficient to relieve VP, and they have the same efficiency both in adults and in children.

Full article: http://www.jadweb.org/article.asp?i...me=9;issue=6;spage=248;epage=252;aulast=Swain