I just wanted to ask a general question to throw out there: does anyone else experience ear pain with MAV? I haven’t been diagnosed as I’m waiting to see a neurologist but I think I have MAV. If I eat the wrong thing or my hormones are changing I get stabbing ear pain, mostly in my right ear and it’s extremely painful. This is accompanied by pressure in both ears, feelings of water in the ears at times and short bouts of dizziness. Then I have stomach issues. Then it all goes away entirely. I also get head migraines right between the eyes that are helped with Relpax (why I’m leaning towards MAV.)
Does anyone else experience the actual ear pain? It is helped with Lorazepam but I’m not sure if that’s because it just puts me to sleep and when I wake up the pain is gone. I have been investigating TMJ and my dentist says I have it for sure, and that this could be causing the pain. That doesn’t make sense to me though since it is brought on by hormonal changes and food, and never hurts when I wake up in the morning after a night of grinding my teeth? My jaw isn’t sore. I’m getting X-rays and a night guard just in case.
When I listen to music with too much bass/too loud my ears also get pressure and the right one hurts and then sometimes I get dizzy. I was looking into Superior Canal Dehiscence but this is the only relating symptom.
Any insight would be greatly appreciated! I have read many, many accounts of what other people are going through and they all seem to match up with my story in some way other than the stabbing ear pain. What are your main symptoms with MAV? Just trying to diagnose myself at this point because I have been told it is going to be a year until I can get in to see a neurologist. I will not be waiting that long because I will keep pushing until I get in sooner but any information I have to fight the medical system with will help. Thank you!!
Your post is very timely! I just had a two week episode where my primary symptom was ear pain, fullness and muffled hearing. Both ears, switching ears, then primarily my right ear (most of my one sided symptoms occur on the right side). See here: http://mvertigo.cloudapp.net/t/bad-patch/3458
My neurologist and his staff (the audiologist and the neurotology nurse) all confirmed these sorts of aural issues are common for the migraineurs they see.
At the time I also re-read a lot of the archived material on this forum, especially the MAV fact sheets found here: http://mvertigo.cloudapp.net/t/vm-fact-sheets/1222 In particular the paper by the folks at John Hopkins mentions that otic migraine (i.e. felt in the ears) occurs for about 40% of migraineurs.
I also have extremely bad TMJ (and do use a splint) which potentially confuses the issue. There is a difference of opinion amongst migraine experts as to the role of TMJ (or not) in migraine. In my own experience the symptoms of otic migraine vs TMJ are similar but with subtle differences. The popping sensation in the ears from TMJ tends to be alleviated in the short term by stretching the jaw. This doesn’t happen when it’s migraine. I also never have ear pain with TMJ - pain in the jaw, neck and scalp, but not the ears themselves. Perhaps that is just me. In addition, the ear sensations with TMJ are sporadic, with migraine they were chronic (for two weeks straight).
THANK YOU for posting Victoria you have no idea how much anxiety you just relived me of. Since this is new to me and I don’t have a diagnosis I sometimes get carried away down different paths like I have spinal fluid leaks or canal dehiscence or it’s my wisdom teeth etc. etc. I have always been a hypochondriac which has been getting the best of me lately. My Mom has been saying to me “Don’t hear horse hooves and think zebra’s” and I need take her advice.
I read your recent post and I am glad that they didn’t find any hearing loss and that your tests came back okay. Sorry to hear that things were going well for you and then turned recently too. I hope that your episode is over now and that you don’t have any more problems since starting the medication again. Glad to hear they confirmed to you that it is still migraine that is going on and nothing else. If you don’t mind me asking, how long were you on Prothiaden for? How long after you started taking it did you see improvement in your symptoms? Does Vallium help your ear pain?
I should re-read the sticky notes as well because when I first read them I remember thinking - yes these symptoms make sense, I think this is what I have! I had originally posted my symptoms on another message board when Scott directed me here to read the MAV survival guide. Interesting that 40% of migraineurs have some sensation in the ears! I have never heard the term “otic” but that will definitely help with my google research.
Also interesting that you have TMJ as well. Has your splint helped the ear pain/migraine at all? I cannot no matter what I do alleviate the fullness in my ears when it is happening and it seems like when I just give up on trying it eventually goes away. The ear sensations last about a week with me so pretty similar to your situation. Not good that you have other pain with TMJ too I’m sorry to hear that. We have enough to deal with already!
Thank you so much for replying you have really put my mind at ease. I was thinking I was the only one on this board with the ear pain so it had me questioning myself as to whether it is really MAV going on. Sorry for all of the questions and hope you are feeling better.
I was on Prothiaden in total for about two years. I started at 25mg, working up to 75mg. After a while symptoms starting creeping back so I went all the way up to 150mg. Late last year I decided to come off it altogether, which took me several months (I did it very slowly). It was a very effective med for me, I was roughly 80-90% most days. I started back on 25mg a couple of weeks ago, but I’d already started to feel better (the episode ended up only lasting two weeks) so I don’t think I’ll stay on it for long. I kind of know what triggered it anyway - lots of stress and hormones. Big bang!
When I first started getting ear popping 20 years ago I got a splint. The popping went within a couple of days and has never returned. Very effective. If I get prolonged jaw pain it usually means the splint needs adjustment, or I need a new one (I’m onto my third). I am not convinced however that the splint makes any difference with migraine.
Valium didn’t really do a lot for me in this latest migraine episode - it’s great for anxiety, muscular pain and some vertigo. Hearing, pain and fullness, not so much .
Definitely keep going back to the sticky threads and the great articles by the migraine specialists - it’s easy to get get caught up in our own anecdote and speculation and worrying about what other conditions we may or may not have. Quite reassuring to re-visit what the experts have to say.
I also get ear pressure and pain, sometimes in both ears or just one at times.
I have also not been officially diagnosed with MAV by a neuro, but I gave all of the information from this site and also told her my symptoms and she said I may have diagnosed myself so we are working together to try and figure things out. I am currently taking 37.5 Venlafaxine (Effexor generic) and 30 of Propanolol (Inderal generic). I have been on the Venlafaxine for 3 weeks and the Propanolol for 1 week. My dizziness triggers haven’t changed (I am dizzy right away when driving or riding in cars for the last 4 months) and I also have random dizziness where I will walk around the house and have to grab a wall. Lights in store also seem to cause a problem for me.
I hope we both are able to figure this out soon. I feel like I am losing myself because I can’t contribute enough at home because I can’t drive and was the one that did all of the errands during the week for my husband. I was also doing part time work and can’t drive to do that anymore, so our finances are very strained which causes more guilt for me.
I’d like to hear how you are doing in the future.
Victoria - Glad to hear that things are settling down now and that you have found a med that has and is still working well for you. Stress and hormones are really the two biggest factors for me too an I think a lot of others are the same.
One thing I just discovered tonight is that taking Relpax for the ear pain actually worked!! It has calmed my head migraines as well as the ear pain now so that is interesting. I know meds like that don’t usually help with dizziness though so if that is your main symptom it might not be the best to try? Something to throw out there though and this is confirming to me that I have migraine going on because I can’t see any other reason for a medication made to shrink blood vessels would work on pain? I am not a doctor though so I could be wrong. It has no side affects for me and I only took 20mg. You can go up to 40mg in one day.
Donna - Sorry to hear that this is putting a strain on you I completely understand. I also don’t think it is healthy to not know what is going on with your body/brain because it is easier to get through if you know what is happening and why. That is great that your neurologist is working with you and trying different things out, really hope these medications help you with the dizziness and pain. I remember after having my first vertigo attack that taking the bus and being in a car brought my dizziness on stronger and I had a very strange motion intolerance so our symptoms match up there.
Keep me updated on your situation as well and I hope we will both be feeling better soon. I’m working on getting myself into the neurologist sooner than a year because I think that is crazy but once I get one I’ll let you know what they say to me. Take care, hope you are feeling well today!
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