Those of you who have or have had jugular compression – what were the symptoms? My symptoms are back, and I’m trying to figure out if they are consistent with jugular compression. Main thing is this weird, spacey sensation in my head. Like I’m not quite all there. More heavy-headed than light headed. What did/do your symptoms look like?
I fely a bit out of it too- like being a bit drunk, I had to really concentrate to follow conversations etc. I was a bit off-balance all the time, & had some real dizzy spells. I also had some weird & quite frightening symptoms- like feeling I was falling, even when sitting down, feeling I was closer to the ground/ shorter than I was, & a sort of horrible rolling feeling in my head. Someone else described it as a sort of sucking feeling too. I was tired, & had head & ear pressure. If I slept flat at all I’d get a headache.
I hope this helps.
Oh wow, that helps a lot. Pretty much describes how I’m feeling!!!
Some for myself included brain fog, pulsatile tinnitus and heart rate changes with my head in certain positions especially rotation or looking down. Falling asleep in these positions and then waking up in a big reflexive valsalva which would give me a pounding headache.
I had tinnitus, brain fog, major head pressure, headache that were resolved with my first surgery. Praying my second surgery will help my heart rate, heart racing/skipping as my second jaguar is 80% compressed.
This is my worst symptom. Spacey numb feeling in my head along with a sucking sensation in head, behind eyes and in my ears.
So detached visually from reality it’s untrue.
I have bilateral ijv compression
How are you managing with work? I really feel for you…
It’s so hard to feel that awful & still have to function as normally as possible.
Hi @Bopper, my symptoms were very similar to Jules, head (heavy) & ear pressure and constant pain, dizziness, off-balance, positional vertigo that would make everything spin for 10-15 seconds. Constant headache, tinnitus and general feeling of unsteadiness, I looked like I was drunk all the time and yes, the spacey feeling. All these symptoms are extremely draining and add the pain on top…well you know. Sadly, it took many of us a long time and many doctors to get a diagnosis and some help. BUT, there is hope, I am now 2 months post surgery for my second side and feeling pretty darn great! Best of luck to you my friend, never give up.
@Weezie65, that is great to hear! Did the surgery resolve your tinnitus?That one is driving me particularly batty today.
No it did not, still have it in both ears. I can live with that, annoying as it is; I always make sure I have noise going on in the background, TV, music and sleep with white noise every night. All the other symptoms were debilitating; glad to have my life back, and I can’t say enough about the support I got from others on this forum.
Weezie, so glad that you feel you’ve got your life back- & hopefully you can get on with those garden plans! Have been praying for you
My symptoms are pain behind eye, heart beating in my head in certain positions, dizziness (this improved on blood thinner med) and a weird whooshing sucking feeling sometimes. Seems to happen randomly.
So glad to hear how well you’re doing. I agree wholeheartedly that the residual things left after surgery are, for me, nothing I can’t live with. My debilitating symptoms are gone! So glad you’re experience is the same.
hi, good evening everyone, its really interesting to read all of your replies - it really helps, as I find these symptoms to hard to describe, its really good not to feel alone with them, but I do wish that you weren’t suffering or have suffered like this… I have had pots and cci/aai but these symptoms are different to those… I feel vertigo and nausea, like there is a whirl pool going around in my head and pulling downwards at the same time. My tachycardia is random as is the fatigue which is different to how it presented in PoTS - which was very specific. I also have pain behind my left eye, like something is in it and it. can be behind my ear too and into my throat, yes it gets worse when lying flat and I am hardly sleeping… waking up frequently through the night. I just wondered if any of you are seeing specialists in the UK and who they are, how they have / are helping you? Im sorry if Im repeating myself, I have messaged on here before but memory is poor. x
We have a couple of UK members waiting to see Mr Axon at Addenbrooks, unfortunately he seems to have to do more vascular testing, which along with Covid has caused long delays.
Here’s a link to one discussion- it’s really long but Natty04 gives some info about other doctors she’s found helpful:
New Here … not diagnosed yet UK - General - Living with Eagle
& JustBreathe posted a link to a research paper, That & the discussion you might find interesting:
New paper associating vascular ES with IIH - General - Living with Eagle
I’m sorry you are struggling. I can relate to some extent to your head sensations, especially the pulling down. My eyes and head feel like they are being sucked in and down and I am always physically and visually spacey. Like I’m in a floaty dream! Just awful.
I would recommend Addenbrookes in Cambridge if you suspect eagles/ijv compression.