Ok, so long story short I have had these symptoms off/on since March:
*Off balance/rocking/on a boat dizziness
*Pressure in face/ temple
*Sinus pressure
*Ear pain
*Whooshing sound in ears/ and clicking (like morse code)
*Numbness in face (but isn’t actually numb- feels like novacaine)
*Dark shadow goes by in corner of right eye
*Tingling all over body and random “numb” feeling spot (that isn’t actually numb) on my ankle
*Anxiety
My ENT thinks it is vestibular migraine and prescribed Pamelor, but my Neurologist thinks it could be “ear related”. I have had the following tests done and everything came back NORMAL:
*Bloodwork
*EKG
*2 Brain MRIs w/ and without contrast
*VNG
*Audiology hearing test
*Allergy test (did find out I’m allergic to a bunch of stuff)
*Vision test
I am soooo confused and tired of having these symptoms. My ENT said a lot of women my age (28) who come to him inexplicably dizzy with otherwise normal test results have MAV. I haven’t started my medicine yet (going to this weekend), but I am looking for any advice you guys may have. Were your symptoms similar? Does this sound like Vestibular Migraine or something else?
Sounds like you are in the right place. I had all of those tests done (except allergies) and all were normal as well. I checked off 8 of 9 symptoms you listed as incurring those in some form throughout the last four years too. Start the Pamelor and see how you feel. It can take up to 2-3 months for medicines to have any efficacy so give it a good shot.
Expect others in this forum to chime in with great debate about whether this originates from the brain or ear. Regardless, do your due diligence to make sure do not have anything “ear related” going on. In the end, the treatment maybe the same given your symptoms.
This spectrum is indicate of MAV or Secondary Hydrops.
I get the clicks. Was this ever explained to you?
If ‘eat related’ could be Secondary Hydrops. This is over pressure in the ear. Mine was caused by a fistula. When they heal they leave an imbalance between endolymph and perilymph fluids causing a pressure. This explains the whooshing sound and the ear pressure/pain. Does this increase in certain positions? It sometimes does for me bending over. Hydrops can also give you migraine symptoms as the instability in the ear causes your brain to get upset.
Nope but I will ask on my next visit to my ENT (but unfortunately that won’t be for a while as I agreed to see him once a year! I’m already 2 years in and things have somewhat improved but still get the tinnitus and mild pain). I’m wondering if it is due to a spasm of one of the muscles in the ear.
What have been the major things you have done to regulate this? I am so frustrated and I feel like no one gets it.. I had a co-worker make fun of me this week ..He said maybe you have “dizzy” blonde syndrome.. I’m like uhhh how about feeling like I’m sailing on turbulent seas 24/7?! Seriously no one understands
I feel your pain! My friends and family say am panicking and making a storm in a teacup and it’s just my nerves. Well…the feeling you’re describing can and does interfere with everyday life, making you anxious and worry about the health. So yes, we may be a bit paranoid but everyone would feel this way not knowing what the hell is happening.
