Could some of you share your experiences with your MAV related ear symptoms and what relief, if any you have found from them and what caused that relief? My ear symptoms are causing me a lot of anxiety as I keep thinking that I’m gogin to lose my hearing for good or my ears are going to stay this way forever. I’d like to know what others have experienced.
I have major ear symptoms. Feeling of fullness, snap crackle and pop when swallowing, pulsating tinnitus in one ear, occasional pain etc… It is so frustrating and I have found no relief! Sorry, not the answer you wanted, just wanted you to know I have ear symptoms!!
Good luck to you!
I got ear symptoms a few months in, they included a feeling of fullness, crunching sounds when i move my jaw and for a while tensor tympani pulsing in my left ear in response to certain sounds. Also various crackling and little flutterings and noises inside. Some of these things improved within 12 to 18 months however i still have the crunching sounds when i move my jaw a certain way and with this lastest relapse some of the above ear things have got worse again but they had been ok as i say after about 12-18 months, hope this helps x
I have symptoms of Eustachian tube dysfunction and tinnitus in both ears, have done for decades to one degree or another, gone thru the roof since the onset of this current episode.
For some people, Topamax helps with these symptoms. I have just started this drug, and by the second day I believe I was already feeling some ‘activity’ in my ears, and less tinnitus during the day. Still loud tinnitus at night, and more tinnitus & plugged ears if I eat too much sodium, but a teeny bit better overall. May or may not be the Topamax as I say I have just started this Rx.
Other drugs may help as well.
Reducing your sodium will help almost no matter what. Drinking lots of water will too. Take your B complex vitamins, and try nettle if you feel bloated and ears are esp full or loud. Ginger is a good supplement or tea for your ears and balance in general. Make sure you get some kind of exercise, even if they are only seated yoga stretches.
Good luck; this for me has been one of the most stubborn, long lasting and quality of life affecting symptoms of this condition.
I have to agree with Kathleen here. Along with all the other MAV symptoms, my ears always felt full or some days they just hurt. I also have the ear rinnging, which has gotten better. The ear fullness has gotten better ever since I started topamax. Its still there but not as bad. Hopefully itll continue to diminish.
Thanks for all of your replys. I experience a lot of temporary hearing loss, none of which is actually reflected on a hearing test, fullness, ringing, pain, the works. I have a definate hormonal trigger. All of this started a few months after the birth of my daughter and the ear symptoms (and all my other symptoms for that matter) get drastically worse shortly before, during, and right after my period. I just got up to 75mg of topamax. So far I don’t see too much of a change in the “baseline” ear symptoms but it’s still very early and I still have yet to see how it will effect the hormonal flux.
ajs1016-This whole mess started for me immediately following childbirth as well. I found Nortriptyline to be of help for awhile, but, it recently stopped working and I have been very ill for the last 3 weeks or so. My whole head/ears feel like they swell with fliud, then the dizzies start, sometimes full vertigo, ear symptoms, nausea etc. Kathleen explained ear symptoms very well. Interesting that you are all taking Topamax, thinking of starting that soon! Wish you all well!!
I also have ear symptoms. And Nortriptyline helps me. I do have setbacks and still some problems. But it has reduced it very much. I am only on 20 mg. and will not go any further, but it still has helped. Best off luck to you!
As Bbrees just reminded me; Gingko Biloba!
I believe the dose was 60 mg and I took it once a day. Helped with the ringing in the ears I had forgotten all about it!
Thanks for the info about the ginkgo. Its day 4 of 75 mg of topamax. I’ll be sure to keep you all posted on how it effects my ears. So far it’s helping the vertigo, dizziness, and every day headaches so it’s movement in the right direction but these ear issues are relentless! I have a killer cold right now too so that’s not helping anything at all. I couldn’t hear well to begin with!
bbrees - Have you ever asked your doctor about getting any hormone testing done? I think Im going to ask my neuro at my next visit. Its no coincidence this all started after childbirth and then gets 100 times worse every month around my period. I’m wondering if maybe something is out of whack…get the hormones back in line and maybe that will help reduce the triggers…greatly. I’m not really ok with the “it took 9 months for your body to get that way, it will take time for it to go back to normal”. My daughter is 9 months old today. I would hope things would be normal by now. Maybe my body needs a little help!
I’m new. And, as I’ve recently read, I’ve broken one of the 10 commandments–pretty badly. THe one that says “accept your diagnosis.” Well, I hadn’t–until recently. Mainly because I had THREE separate diagnoses, and, well, how can you just ignore one for another when both are viable probablilities. Long story for another post.
Ear symptom–and question.
I get weird ringing in (mostly) my right ear. Please tell me if you get this, which I find to be very specific, symptom too. Sometimes, out of the blue, even when I’m feeling amazingly “well” I can be HIT with deafness and high pitched ringing in my right ear that makes me feel like I could quite literally fall to my left. My balance is thrown WAY off, the ringing is VERY loud and the deafness is profound, and it is a deafness that almost “feels” like it takes over half of my head–I don’t know how else to describe it. Anyway, it usually lasts approximately 10-45 seconds and then subsides–but I usually end up with a centralized, fairly mild, headache soon thereafter. I HATE IT–but it is not continuous (so far, thank GOD) and it is not as bad as other issues this thing brings–so… :roll:
Oh yeah–vestibular and hearing tests don’t support the tinnitus and deafness symptom. Dr. couldn’t find any evidence of hearing loss or inner ear damage.
Part of the MAV diagnosis…
I am no doctor and I don’t know your history other than your description just here but it sounds a bit like Menieres disease from what you describe.