I have been told my styloids are twice as long as they’re meant to be. I get random headaches that appear out of nowhere and then randomly disappear again as well as stabbing ear pain that also comes and goes randomly. I have a feeling that my symptoms are more vascular in nature. Does anyone else get pulsatile tinnitus/whooshing in their ears when they stand up?
Yes, I had the pulsatile tinnitus, both my jugular veins were compressed. It’s a lot better after surgery! There’s some info on the Whooshers.com site about other causes as well if you’re interested. Have you had a CT with contrast to see what’s going on?
Oh interesting I’ll have to check it out thanks!
What did you find brought on your pulsatile tinnitus? Was it relating to changes in position?
Nope just a normal CT not contrast so far.
A CT w/ contrast will show if there is vascular compression or not but a regular CT is just fine for showing the styloids & s-h ligaments. If you suspect vascular compression & opt for a CT w/ contrast, make sure you let the technician know if a certain head position produces the pulsatile tinnitus & have that person scan you w/ your head in that position.
I found mine increased with anything that would perhaps cause an increase in blood pressure rather than a head position; like standing up suddenly, going upstairs or any exercise, being hot, stressed…but also laying flat made it worse, so I slept propped up.
Hi! Yes I hear the whooshing sound on my effected side. I have not been diagnosed with eagle syndrome yet though I have many of the symptoms and have been told I have a typical neuralgia since I have a combination of glossopharyngeal and trigeminal neuralgia. I went to see an ENT today who had an exray done and he said he will review that and if needed send me for 3-D CT scan.
I had eagles both sides. Heartbeat/whoosing in left ear. I had an ultra sound of my neck done by. Vascular surgeon which showed left interior jugular vein was being compressed. I am almost 4 weeks post op left side and heartbeat sound in ear has lessened (not as loud) but is still there. Im being patient as i still see there is swelling in my neck. Good luck!! Hugs and prayers
How is your stomach feeling? Any improvement there? Glad to hear the heartbeat sound in your ear is getting better. Good for you for being patient! It should continue to get less & less as time passes.
I get pulsatile tinnitus when I turn my neck!!!
@Isaiah_40_31 hi! Im hanging in. Stomach isssues were sever. So bad i was kealed over in pain. So i started a fodmap diet to see if that would help. The last 5 days on the fodmap diet i have no cramps or pain thank God but every time i eat i have “bubble guts” - i feel my GI track bubbling like crazy. Im trying to be patient. I hope things get better and praying. xoxo
Omg I get this especially when I stand up iv been getting treated for a year with angina and wondering if it’s all related I was sent to a neurologist for symptoms that are eagle’s related and he agreed and said that he was glad to leave me in the hands of maxillofacial surgeon then he wrote to my GP and said I was too focused on my throat problem and suggested that I get CBT I’m actually in tears and have spent last 2yrs in constant pain this past week iv spent in my bed too tired to do much but now I’m angry at the aroggant prick pardon my french I have CT with contrast next week then back to surgeon in November I’m just glad my GP is backing me and has written a letter of complaint to the ent surgeon who misdiagnosed me x
PinkyT and Jules…would you maybe also call the whooshing a kind of liquid fluttering? Or maybe just fluttering…I’m never quite sure what makes it stop, but always so darn happy when it does! It’s just a little much when paired with the tinnitus.
As an aside…since I seem to have other odd/rare things (ducts of luscka), does anyone experience sneezing when they look into bright sun? I’ve forgotten what the doc called it.
I’ve had the sneezing thing from the sun, but it’s inconsistent so perhaps not the particular syndrome you’re thinking about.
So sorry you’ve been “kicked around” by the neurologist. It’s soooo frustrating when people unfamiliar w/ ES are dismissive rather than inquisitive. There is ALWAYS something new to be learned in the world of medicine no matter which field the doctor’s specialty.
I hope your CT shows clearly what’s going on.
I have had a sort of fluttering feeling/ sensation in my ears, yes. The whooshing I get is just like the sound you hear when the midwife checks a baby’s heartbeat in your tummy.
Thanks for the kind words I’m glad I found this group and glad my own GP is so supportive of me yea can’t wait to get scans done then I can take it from there
Has anyone else had the “fluid feeling” “crawling” “popping” sensation all over head and in ears? I saw it from a few people on here and was like omg it’s not just me. I have bilateral jugular compression. It seems to worsen with position changes. Also have left sided vision change, numbness, pain in left neck, face, eye.
Did reply to your post on the other discussion, but forgot to say the numbness, face pain & possibly eye pain can be down to nerve pain, usually the Trigeminal nerve. I has 3 main branches which go to the lower jaw & teeth, the face, & eye/ eyebrow & top of the scalp. That can be helped with medications sometimes, some antidepressants or anticonvulsants can help, there’s info in the Newbies Guide section. It would explain why it changes with posture- as you move your head & neck about it can move the styloid & bring it into contact with different structures, or it can be there all the time.
Pressure on nerves can cause numbness or tingling too.