I’m new to this forum and i’m so glad i have found it!! I’m 31 yrs old and I have been diagnosed with MAV. A few months ago I began having debilitating migraines, extremely light sensitive, and some hearing loss. But I have to say, the most upsetting symptom I have suffered from has been a constant, pounding, pulsating in my ear. pulsatile tinnitus. Have any of you experience pulsatile tinnitus in conjunction with your MAV?? please report. spoke to my vestibular therapist and my neuro ent about what i can do about tinnitus, they said if the migraine suppressants doesnt do then nothing will.
-pulsingpatty
Yes!! So ive discovered its actually there all the time in my left ear,most times im not aware of it but when im veey symptomatic its in both ears and loud…whoosh whoosh whoosh whoosh!! Xx
Tinnitus started 3 weeks after my first MAV experience. It got really quite bad and remained that way for a year then recently it has shown signs of easing. It was very hard to cope with to begin with but I’ve got used to it.
It pulses 5% of the time. Usually it’s just a slight hiss or buzz that is constant
It’s one of the symptoms that to me suggests something else is going on than a migraine. I believe it’s due to pressure build up in the ear. I have had a couple of ENTs suggest Hydrops.
I will say that it has got both less intense AND I’ve got used to it.
Don’t worry it may well go in time. But in its own time!
James did the ENTs say you had hydrops and MAV? What exactly is hydrops?
I’ve had 4 diagnoses:
- Migrainous Vertigo (MAV)
- “A touch of Hydrops, or Migraine Variant”
- “Something central” aka MAV
- a healed PLF then Secondary Hydrops
The thing is I don’t believe migraine causes ear trouble. I think you get Migraine FROM ear disturbance. I simply don’t buy it that you get persistent symptoms from a migraine, an entity which is surely by nature episodic.
My own conclusion is I get migraines from BPPV and Hydrops, the latter which was brought on by BPPV (see Hain). It all started with an isolated 5 week episode of severe vertigo with no auditory, migraine or pressure symptoms. I didn’t see a specialist and it cleared up, only to return as light headedness and nausea 5 months later (I reckon blockage) with tinnitus starting three weeks later.
BPPV is by far the most likely culprit. It is the most common form of vertigo.
The thing they’ve all never been able to explain is the bubbling up noise I get in my ear on righting from bed in the morning. It’s like there is a variable blockage in there or air bubbles. That might explain the pressure and the tinnitus. This sensation has got less intense over time
It’s not like Menieres (I don’t get episodic fullness or deafness) so I don’t mean Hydrops in that sense. I do have persistently slightly dulled hearing in the bad ear, but it’s still fine for most circumstances except loud noises.
Hydrops is thought to be a build up of pressure and/or imbalance of fluids in the ear due to some other condition. My bet is on blockages in the plumbing. Hain mentions BPPV debris can cause it. This is compelling.
The second ENT mentioned that Amitriptyline is used to treat Hydrops patients too, so the symptom management is suspiciously similar. There is no recommended surgical procedure for any of these except the PLF. But the only ENT to suggest that reckons it’s healed.
Lee do you get tinnitus?
Yes I have pulsatile tinnitus as well as high pitched buzzing tinnitus and sometimes I can add into that low buzzing tinnitus, all only in my left ear. Strangely no hearing loss. Nobody is able to explain it to me but it is much worse when I feel unwell either with increased vestibular migraine symptoms or just a common or garden cold. Noisy place my left ear and no relief from nortriptyline.
I never really connected these two things before reading your pulse, but I do experience this sometimes. However, it’s only when I wake up in the middle of the night, and it’s not every night. Very strange! I haven’t told my neuro about it because I didn’t even know how to describe it before reading your post, and because in the larger scheme of things it’s not that annoying to me. I also have about 10 seconds of tinnitus in one ear, about once a week or so. Very random. I’ve had this pretty much my entire life. I haven’t paid to attention to whether or not it’s always the same ear.
A little bit of tinnitus is entirely normal. Persistent bothersome tinnitus is NOT.
If constant tinnitus isn’t part of vestibular migraine and I have been cleared of an acoustic neuroma what do you think is going on?
Well here we get into the contentious bit.
All I will say is have you ever had a scan that allowed you to look in DETAIL about what’s going on in the inner ear?
The MRI’s used to rule out acoustic neuromas are not high enough resolution to do this.
I’m not saying you should have such a scan but I believe there may be a lot of information in there that we have not gleaned.
I suspect you would need a cone beam CT and many doctors don’t want to perform them because it exposes you to some if nominal radiation.
I imagine their justification is that if your symptoms are largely controlled, stable and perhaps improving there is no need to expose you to radiation.
Thank you. The tinnitus is always out of control and has been a permanent fixture for years. It gets worse when I am unwell but never ever gets mild enough to ignore it. I have learned to live with it but would rather not have to. It is always just dismissed as if it is of no consequence, bet they wouldn’t take that attitude if they could hear what I hear 24/7!
Mine is almost 24/7 but declining and have had moments I could not hear it. I’m sure from all I’ve read it’s down to ear pressure. One way to put you at ease is that I believe it shows your nerves are working, but the pressure makes them give off noise. The higher the pressure the more noise, a bit like trapped nerves elsewhere in body. That’s my hypothesis.
I can understand that. Any ideas about how to reduce the pressure. My ear does sound like my pressure cooker!!!
Time may be the best healer. I hypothesise pressure may be down to a combination of blockage and/or inflammation. Both should theoretically decrease over time as there should be nothing to artificially sustain them: blockages dissolve, collapse and inflammation clears up.
I look forward to that big time!
Me too! Though I must say it definitely HAS improved already.
The main advice I give to anyone about tinitus is try to absorb yourself in something interesting; boredom or pre-occupation will only amplify it!
Margaret, another important consideration is stress reduction as that can influence pressure. I’ve often wondered if stress was a factor in my pressure increase. You do hear many tinnitus sufferers saying it gets worse when stressed. Tbh I first noticed it was a driver of vestibular symptoms before it became an auditory one.
And I’ve just been prescribed a diuretic to see if that will help. Not convinced …
I find I tend to get a big increase in volume in my right ear tossing tinnitus when I put my vestibular system under stress for example when doing balance exercises or walking in particular symptom inducing environments. I get a bit of very quiet tissing occasionally in one ear only but can go days without. If I do get it in both ears that is a bad sign.
I read Pulsatile Tinnitus which is always confined to one ear can be a sign of narrowing of the carotid artery and surgery can correct this using a stent as is done with heart patients. I never knew that before.
If you can increase the tinnitus with a clench of the jaw, imho it’s indicative of a degree of hydrops.
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I will have to take special note of next time it just happens I find have my jaw clenched. Sure could be a strong possibility.
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