I’m not sure where to begin here. I’m a year into this journey. Began (Summer ‘24) with random onsets of loud ringing, followed by feeling dizzy, losing balance and (sometimes) falling over.
Then for the next few hours I’d obviously feel nauseous. Then the onset of the worst ear pain you can imagine. Of course then headaches. All on the left side. Left Eye pain/sensitive to light. Pain in my teeth. Just now recently feeling a weird sensation on left side on my tongue in very back. Then around November I started to get this burning feeling on the skin of my neck. The area under my left ear and down to just above my collar bone. It isn’t a sunburnt sensation and it’s difficult to explain but now the pain moves into my chest and sometimes there’s palpitations with the sensation (not my heart)
A few weeks ago I experienced a crazy rise in blood pressure (no issues in that area ever) and then I felt extremely weak on my left side. Thought it was a stroke.
It’s like ground hog day.
I started at the ent last year, said possible Ménière’s so I cut back on the small amounts of salt I do intake and he prescribed a diuretic. No change into a year. I stopped the diuretic. No worse, no better.
Newest ENT is now mentioning same. They’ve done a lot more testing however. I do have a positive ECOG on left ear. And a positive VNG on right side. She ordered a soft tissue CT scan and says they found nothing. Won’t order a 3D and I don’t have my images myself.
The only imagine I have is the MRI my original ent ordered last summer to rule out acoustic neuroma.
They do continue to find my left mastoid always having opacification but never any infection. Yet they want to throw hard antibiotics at me. I refuse to take. Been there done that already!
Certainly some symptoms you have are quite common with ES; pain in your teeth could be the Trigeminal nerve which is often irritated by the styloids, eye pain could be this or possibly vascular ES if the carotid artery is affected. Burning tongue & mouth is common, possibly the Glossopharyngeal nerve, ear pain can also be this nerve, and many members get headaches. Vascular ES can cause dizziness & balance issues, if the internal jugular vein is compressed this can increase head pressure and cause this, if the carotid artery is compressed it can cause fainting. BP spikes & heart arrythmias can be caused either by irritation of the carotid artery or the vagus nerve…Tinnitus is also a common symptom.
It’s unfortunate that you don’t have copies of your imaging, as we could always look to see if your styloids look elongated at all, a CT is the best scan to see them. You could upload the MRI (anonymize it first), occasionally styloids can be seen on that. Unfortunately many radiologists are unaware of ES, & lots of members have been told their scans show nothing remarkable & when they get copies the styloids are very elongated!
I can only suggest that you try & get that CT copy, or request that’s it’s re-read & evaluated for ES. Otherwise are you able to get a second opinion, and be referred to a more experienced doctor, like Dr Hackman in NC?
Thanks Jules. I’ve been researching it all. Is there something special I should do to get the MRI pics uploaded. I have tried.
Sorry, can you try again, we have a trust level on here to stop new users spamming, I presumed as you’d started a discussion yours would’ve upped a level, it hadn’t so I’ve done that for you now!
@annaleighm - I’m also sorry to read what you’ve been through & presumably that you’ve been misdiagnosed. I was also diagnosed & treated for Meniere’s Disease for 8 years before I discovered I had a compressed internal jugular vein that was likely causing my symptoms. Your symptoms do sound more related to internal carotid artery irritation or compression though.
I’m sorry to say that your MRI images aren’t helpful in seeing what we need to see to help you. 3D images of the area between the skull base & hyoid bone in the front or from the side are the best for us. You are entitled to a copy of your CT scan so it would be wise for you to request a CD from the facility where you had it done. There is free software online that you can use to convert the CT slices to 3D images once you get the CD uploaded onto your computer - RadiAnt (radiantviewer.com) for PCs or Bee Dicom Viewer App for Macs.
@Jules has did a good job covering what nerves/vascular tissues could be causing most of your symptoms. I had a problem w/ plummeting BP when I exercised which would cause my heart to race crazily which made me feel breathless & like I’d was going to pass out. Thankfully that stopped after my styloidectomies. Heart & BP symptoms aren’t uncommon w/ ES, but they are uncommon w/ Meniere’s.
Good job declining the antibiotics. You probably don’t need them.