@baldcaldwell not the compression but the blood flow and the pressure gradient. Ultrasound can also measure the blood flow & resistance in the narrowed section but this depends on the technical expertise of the technologist performing it since accurate measurements depends on the angle of the US probe, head & neck position and the area of interest. So depending on these factors, the result could be easily skewed positively or negatively. That is why vascular surgeons prefer the catheter angiogram/venogram since it is done by interventional radiologists along with vascular surgeons. it also measures the pressure of the narrowed area bit more accurately. Also, it is generally difficulty for ultrasound to view bony areas at the base of the neck since sound-wave does not appear to penetrate bone very well. Bottom line is, you can have compression, but it might not be pathogenic (disease causing) if it does not affect the pressure and the blood flow.
@Dontgiveup I feel your pain but this too will pass. Nothing stays the same. I know how it feels but you need to focus on how you can mitigate the pain and reduce the head pressure. There are number of good suggestions in this site to lessen the pain and manage ES. For example @TheDude posted a number of tips here (Small tricks to help Eagles with IJV compression - #4 by TheDude). I would also add one thing that I found important. If you take multivitamins, make sure to take less Vitamin A or no Vitamin A at all as too much Vitamin A is associated with increase of intercranial pressure (Raised Intracranial Pressure - Secondary to Vitamin Overdose). Sleep on wedge pillow. Do not lie down alot since lying down uses the Jugular Vein as draining which in your case is impaired. lie on an incline like sofa chair if you want to relax a bit. When upright, our collateral veins come to the rescue and do the draining. Do anything that lowers your stress level as well. Any relaxation technique would do.
@KoolDude Thank you again for your help. It’s so hard to find a comfortable position where I feel even slightly better. I find I have to lay down quite a lot which actually helps. I can’t lay on my back because the pressure pools in the base of my skull. I have to lay on my left or right side which helps somewhat.
Sometimes a little bit of movement helps too. Though it’s short lived since I have no energy. I think it’s the instability that makes everything so difficult. I take fish oil to help thin my blood. I don’t take a multivitamin so I’m not getting any additional vitamin a. Thanks for all of the tips. I will check out TheDudes post 
Hi baldcaldwell,
@KoolDude gave you a far better answer than I could have. I hope you found it helpful. Since you do have vascular ES symptoms, I suspect your flow velocities would reflect that your IJV compression is “pathogenic” but having the additional testing done would help to secure that diagnosis. The critical thing is that the testing be done w/ your head in various positions. Too often the tests are done w/ the head in a neutral position & very often that doesn’t provide any helpful info.
Thank you, KoolDude for your helpful information both for @baldcaldwell & @Dontgiveup!
Yes, ES can really make you as ill as you feel, especially when you have vascular ES. We have a number of members who’ve recently been feeling like you are. Getting the styloid(s) removed can make a huge difference, but the positive effects are often not immediate taking a few weeks to a few months to develop.
So sorry that you’re feeling so rough with this, as Isaiah says others have felt so too…I’m pleased that you’ve found someone who has listened to you & can hopefully get you moved up the list a bit quicker. I hope that there might be some helpful tips from TheDude’s post…Sending you a hug 
and thinking of you
Interesting post 
. Doctors treat each body part and complaint as a separate issue so of course the dots don’t get joined.
I’m 70 now and probable EDS but told that it’s ok as you get less flexible as you get older! Ok I vent get my foot behind my head any more but I can still place my palms on the floor and am still flexible though not always in a good way! Hypermobile patellae along with chrondomalacia patellae is not great, nor thumbs that move and swell, neck instability etc. I believe my styloids may have elongated not help stabilise the neck. The lovely soft velvety skin was complimented on now gets covered with topical balms and potions for pain relief. My dancing shoes are put away and dresses sit in the wardrobe waiting to be either worn or donated. I’m sad, I’m in pain and I’m waiting for c1/2 fusion.
@McWelly - Reading this post of yours made me even more sad for you. It’s truly a shame that you’ve only recently been told you may have EDS. The characteristics you mentioned are definitely highly suspicious for that. Getting that diagnosis long ago could have been very helpful, but even now, it helps to explain some things. 
Yes, so many things make sense now but hedging their bets, been told - unlikely I have an inherited form of EDS. At least he checked a previous echo and my heart valves are ok, and said, there’s nothing we can do for it! No maybe not but a few weeks ago I had a steroid injection to my thumb (didn’t work), need two partial knee replacements, the hiatus hernia, the gut dysmotility, the eye haemorrhages etc etc. 
I’m sorry that you have all these issues along with the ES, it’s miserable for you… I’ve just found out I have hypermobility in my hands & feet as I’m having issues with them now, & that’s annoyingly painful enough so I feel for you 
How did they diagnose the gut dysmotility can I ask?
And how’s the infection you’ve had for so long, any improvements? 
Hi @Jules I had manometry prior to my fundoplication some 7 years ago,
I’ve finished another course of amoxicillin for ? Parotitis - that’s what new ENT thinks it is after seeing pics. Funny enough neither he nor max fax consultant can get any saliva from the left side and very little from the right. The submandibular glands are good. I’ve been harping on about dry eyes and mouth for years and my notes show consultations about this. Again, left to me to deal with. Two sialograms showed no stones though.
@Mcwelly - I’ve forgotten if you’ve mentioned whether or not you’ve been tested for Sjögren’s?
@Isaiah_40_31 - no, never. Asked about Lyme too, declined.
It’s just crazy, a blood test at least for Sjogrens might show something! Although if it’s negative that’s not necessarily a confirmation you don’t have it!
@Mcwelly - 
so frustrating, annoying, aggravating, irritating. Just makes me want to 
at the doctors you’ve seen. 
There are worse off than me @Isaiah_40_31 . I have a nice warm house, enough good in my belly, my partner and naughty dog with me plus children (useless for support but nearby).
I love your optimism, @Mcwelly. Those assets definitely make suffering more “doable”. Just wish you could feel well so you could enjoy all of them fully.
Yes, there’s usually always someone worse off, that doesn’t always help though! Good to have that mindset if you can, sending you hugs again
it’s been a long, difficult and increasingly painful journey for me and I appreciate the support and information I’ve had along the way, from kind, caring and non judgmental people who know what it is to suffer.
twice in the past week, I’ve been to the hospital, once to see an OOH GP. He actually sat and held my hand, when did that last happen! Pain was so severe, he gave me morphine….. a few days later, I’m back and this time stayed in overnight and needed larger and more frequent amounts. The doctors once again looked at Eagle Syndrome for my increasing pain which now seems now involves the trigeminal nerve……
Whilst struggling out to the toilet, my phone rang, it was Southampton with a date for my fusion surgery -21 January.
At last, after petition from my MP, writing to the health secretary and pestering …..
@Jules my optician thinks I have Sjögren and there seems to be a link between these areas and symptoms.
Anyway, I will get through one day at a time, I don’t care if I get addicted to opioids, they’re no worse than many other meds and to be pain free and functioning again is my goal.
I wish you all much love and good health for Christmas and beyond and will report back…. I may be an eagle imposter but you’ve been my raptor support 
