# Symptom list

**URL:** <https://forum.livingwitheagle.org/t/symptom-list/4696>\
**Category:** Newbies Guide to Eagle Syndrome\
**Tags:** symptoms\
**Created:** [February 26, 2019, 4:32am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696 "2019-02-26T04:32:05Z")\
**Posts on this page:** 20\
**Page:** 6

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**Author:** ![Sandb8791](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/sandb8791/32/2261_2.png) [@Sandb8791](https://forum.livingwitheagle.org/u/Sandb8791)\
**Post date:** [June 11, 2019, 3:44pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/101 "2019-06-11T15:44:21Z")

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Thank you and I am so glad I found you guys!

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**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\
**Post date:** [June 11, 2019, 8:25pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/102 "2019-06-11T20:25:34Z")

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Hi Sandb8791,

I agree w/ Jules. Styloid looks long ligament partially calcified. I had the same situation. Your symptoms all line up w/ ES.

Sadly, the VA has a history of not being very helpful w/ ES. There are a number of forum members who’ve done battle w/ the VA to allow them to have their ES surgeries outside of the VA medical system & have the cost covered. Some have gone on to pay privately or had additional private insurance that covered surgical cost. One person had an ENT surgeon offer to do his surgeries w/o charge because of his military service for our country. We applaud that doctor. I’m not telling you this to discourage you but to help you prepare for “battle”. Hopefully, your experience will be different than what others have dealt with.

We’re glad you found us! We welcome you with open arms!

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**Author:** ![Sandb8791](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/sandb8791/32/2261_2.png) [@Sandb8791](https://forum.livingwitheagle.org/u/Sandb8791)\
**Post date:** [June 11, 2019, 11:46pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/103 "2019-06-11T23:46:22Z")

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Yes, unfortunately sometimes the VA isn’t as helpful or timely as they should be. I’m hoping it will be different this time, but if not I can use my insurance through work to seek another doctor. I will be sure to keep everyone updated through my journey with the VA.

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**Author:** ![redbird773](https://avatars.discourse-cdn.com/v4/letter/r/b487fb/32.png) [@redbird773](https://forum.livingwitheagle.org/u/redbird773)\
**Post date:** [June 12, 2019, 12:23am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/104 "2019-06-12T00:23:09Z")

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Hi @Sandb8791! I’m not an ENT and I’m not sure what the potential contribution is from the bone spurs regarding the nerve-related issues you described, but it does look like you may have a calcified ligament and maybe also an elongated styloid…at least on the right side. I’ve circled what looks like the styloid (red) and calcified ligament (green). Hyoid bone is in blue.

 ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_eagle/original/2X/5/504fb98013df8da80b71e3b46c8b16ae42473048.jpeg) Best of luck!

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**Author:** ![Sandb8791](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/sandb8791/32/2261_2.png) [@Sandb8791](https://forum.livingwitheagle.org/u/Sandb8791)\
**Post date:** [June 12, 2019, 12:37am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/105 "2019-06-12T00:37:41Z")

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Thank you for doing that! I appreciate it!

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**Author:** ![Cupcake5](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/cupcake5/32/2990_2.png) [@Cupcake5](https://forum.livingwitheagle.org/u/Cupcake5)\
**Post date:** [June 15, 2019, 9:57am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/106 "2019-06-15T09:57:51Z")

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The leg tingle started way before pregnancy unfortunately. It started at the same time my head tingling started from ES. All the strange symptoms began at one time for me ☹ neurologist cant figure out leg tingle. It scares me…if ES isnt causing it then what is ☹

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**Author:** ![Swoo](https://avatars.discourse-cdn.com/v4/letter/s/e495f1/32.png) [@Swoo](https://forum.livingwitheagle.org/u/Swoo)\
**Post date:** [July 28, 2019, 4:26pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/107 "2019-07-28T16:26:41Z")

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Hello, questions about symptoms; 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.

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**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\
**Post date:** [July 28, 2019, 7:14pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/108 "2019-07-28T19:14:53Z")

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Everyone’s different, so symptoms vary a lot…unfortunately Doctors just don’t get it! If you have more unusual symptoms they can often be dismissed! I didn’t have much ear popping, but had the fluid/ fullness, & the weird head sensations. Maybe you should consider seeing an ophthalmologist for the eye blurring; occasionally if the head pressure is high it can press on the optic nerve, & can cause damage; I had the blurriness & got it checked out, thankfully mine was down to dry eyes which I have trouble with & not the head pressure.

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**Author:** ![Swoo](https://avatars.discourse-cdn.com/v4/letter/s/e495f1/32.png) [@Swoo](https://forum.livingwitheagle.org/u/Swoo)\
**Post date:** [July 28, 2019, 7:45pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/109 "2019-07-28T19:45:45Z")

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With the vascular symptoms you had the fluid crawling sensations in your ears and head too? That’s so crazy

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**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\
**Post date:** [July 29, 2019, 6:52am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/110 "2019-07-29T06:52:24Z")

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I had fluid/ fullness sensation in my ears, but just crawling sensation on my head. Had weird other sensations too- pressure on top of my head, feeling like I was falling sometimes (sitting down when it used to happen, horrible!), & a really nasty sort of rolling sensation over my brain, hard to describe! Also a weird one of being shorter than I am, sort of closer to the floor, lol!

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**Author:** ![Swoo](https://avatars.discourse-cdn.com/v4/letter/s/e495f1/32.png) [@Swoo](https://forum.livingwitheagle.org/u/Swoo)\
**Post date:** [July 29, 2019, 5:56pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/111 "2019-07-29T17:56:50Z")

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Anyone have symptoms worse right after eating? I have been getting left sided neck and throat pain radiating up side of my neck into the eye and sinuses and it happened right after eating today.  
Anyone’s symptoms get better lying down?

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**Author:** ![JustBreathe](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/justbreathe/32/2083_2.png) [@JustBreathe](https://forum.livingwitheagle.org/u/JustBreathe)\
**Post date:** [July 29, 2019, 10:07pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/112 "2019-07-29T22:07:44Z")

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Hi @Swoo,  
It sounds like your IJ compression may be causing changes in your intracranial pressure, typically high. This fits with the positional symptoms you have mentioned. Intracranial HYPERtension is usually accompanied by a headache on the top of your head, eye pressure and ear pressure when lying down. Intracranial HYPOtension would be paid at the back/base of your head and typically improves with lying down. It would be prudent to have someone evaluate you for papilledema if you have significant eye pain or vision changes with looking down ets.

Here is a link to research hot off the press. To access the full article click on the “full text links” box at the upper right hand corner of the page. The surgeons are from the Barrow Neuro Inst out of Phoenix, don’t think they are listed on this site but clearly they have been treating IJV ES and IIH for a while now. Hope this is helpful!

> <https://www.ncbi.nlm.nih.gov/pubmed/31329946>
>
> Styloidogenic jugular venous compression syndrome (SJVCS) is a rare cause of idiopathic intracranial hypertension (IIH).To elucidate the pathophysiology and the hemodynamics of SJVCS.We conducted a retrospective review of medical records, clinical images, dynamic venography, and manometry for consecutive patients with SJVCS undergoing microsurgical decompression from April 2009 to October 2017. Patients with IIH with normal venography and manometry findings served as controls.Data were analyzed for 10 patients with SJVCS who presented with headaches. Neck flexion exacerbated headaches in 7 patients. Eleven patients with IIH provided control data for normal intracranial venous pressure and styloid process anatomy. Patients with SJVCS had bilateral osseous compression of venous outflow. The styloid processes were significantly longer in patients with SJVCS than in those with IIH (mean \[standard deviation (SD)\] distance, 31.0 \[10.6\] vs 19.0 \[14.1\] mm; P \< .01). The styloid process-C1 lateral tubercle distance was shorter in patients with SJVCS than in those with IIH (mean \[SD\] distance, 2.9 \[1.0\] vs 9.9 \[2.8\] mm; P \< .01). Patients with SJVCS had significantly higher global venous pressure and a higher pressure gradient across the stenosis site than controls (mean \[SD\] pressure, 2.86 \[2.61\] vs 0.13 \[1.09\] cm H2O; P = .09). All 10 patients with SJVCS experienced venous pressure elevation during contralateral neck turning (mean \[SD\] pressure, 4.29 \[2.50\] cm H2O). All 10 patients with SJVCS underwent transcervical microsurgical decompression, and 9 experienced postoperative improvement or resolution of symptoms. One patient had transient postoperative dysphagia and facial drooping, and another patient reported jaw numbness.SJVCS is a novel clinical entity causing IIH. Patients should be evaluated with dynamic venography with manometry. Surgical decompression with removal of osseous overgrowth is an effective treatment in select patients.

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**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\
**Post date:** [July 29, 2019, 10:08pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/113 "2019-07-29T22:08:21Z")

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Hi Swoo,

That totally sounds like trigeminal nerve pain. I’m battling w/ that at the moment. It cropped up from advanced TMJ 5 years after my ES surgery. When I eat, I get a range of symptoms - tooth aches, earaches, eye pain, jaw pain, pain in my nose (sinuses?) & occasionally a bad headache. The throat pain is probably because your throat is irritated by your elongated styloid(s). This problem will either reduce for you or go away completely once you have ES surgery & that nasty bone is gone!!

I don’t have an explanation for why lying down would help you feel better except that it does change how gravity is pressing on you & perhaps that just enough of a change to take some pressure off of the offending nerve(s). It could also reduce inflammation in that area. Ice is alway worth a try when you’re suffering from pain in those areas. Lay an ice pack w/ a towel between the pack & your skin across the part of your face that’s hurting. It will take a few minutes to reduce or stop the pain AND the pain may get worse at first until the nerve gets a little numb. Ice is always my go to & hasn’t failed me yet.

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**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\
**Post date:** [July 30, 2019, 7:02am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/114 "2019-07-30T07:02:21Z")

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Thanks for that link!

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**Author:** ![Swoo](https://avatars.discourse-cdn.com/v4/letter/s/e495f1/32.png) [@Swoo](https://forum.livingwitheagle.org/u/Swoo)\
**Post date:** [August 4, 2019, 9:28pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/115 "2019-08-04T21:28:19Z")

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Does anyone have persistent daily headaches as one of their main symptoms? I think the majority of my symptoms are vascular and I have a lot of headaches that are worsened by exertion, stairs, bending. Sometimes I feel like it’s going to explode. The dizziness and pain comes and goes, but the headaches are daily and so awful it’s like a new normal.

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**Author:** ![Isaiah\_40\_31](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/isaiah_40_31/32/3054_2.png) [@Isaiah\_40\_31](https://forum.livingwitheagle.org/u/Isaiah_40_31)\
**Post date:** [August 5, 2019, 5:10am UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/116 "2019-08-05T05:10:53Z")

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Hi Swoo,

Those persistent headaches are possibly from trigeminal nerve irritation. They can also be caused by the vascular impingement but it sounds like what you’re describing is more nerve related. Google the trigeminal nerve & find an image of how it splits into 3 branches in our faces. Seeing where that nerve goes may even explain some other symptoms you have. It’s also possible you have some vagus nerve irritation as it can also cause some of what you’re describing.

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**Author:** ![kiZe6159](https://avatars.discourse-cdn.com/v4/letter/k/6de8d8/32.png) [@kiZe6159](https://forum.livingwitheagle.org/u/kiZe6159)\
**Post date:** [September 4, 2019, 9:48pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/117 "2019-09-04T21:48:02Z")

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Yes, the flare ups are a definite part of my life as well. That’s the same thing that happens with Fibromyalgia. Was diagnosed with that MANY years ago and who knows, maybe I have that too. I too have those weird sore throats - feeling like for sure I was coming down with something for a couple of days…throat just feeling raw and burning. I have finally come to figure out that it was caused by my hypersensitivity to certain chemicals in many cleaning products, lotions, etc. When I run into one of those…I have a terrible reaction. It actually chokes me…severe coughing and a bit later - raw burning throat. Thankfully it usually only lasts a few days.

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**Author:** ![redbird773](https://avatars.discourse-cdn.com/v4/letter/r/b487fb/32.png) [@redbird773](https://forum.livingwitheagle.org/u/redbird773)\
**Post date:** [October 18, 2019, 3:40pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/118 "2019-10-18T15:40:51Z")

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I certainly did…thankfully, it resolved with surgery.

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**Author:** ![eagleandchild](https://avatars.discourse-cdn.com/v4/letter/e/3ab097/32.png) [@eagleandchild](https://forum.livingwitheagle.org/u/eagleandchild)\
**Post date:** [October 20, 2019, 5:14pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/119 "2019-10-20T17:14:55Z")

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Wow, this is one symptom that I thought really might be in my head, but I also get the sensation of feeling shorter than I am. Never mentioned it to anyone because it sounds completely crazy. But you describe it exactly as I would, like being closer to the floor than I really am. It usually comes on all of a sudden. Sometimes I also get the opposite feeling of being taller than I am, and simultaneously feeling that everything is super far away from me. Really weird! I won’t even begin to speculate on possible causes…

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**Author:** ![Jules](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitheagle.org/jules/32/404_2.png) [@Jules](https://forum.livingwitheagle.org/u/Jules)\
**Post date:** [October 20, 2019, 7:17pm UTC](https://forum.livingwitheagle.org/t/symptom-list/4696/120 "2019-10-20T19:17:48Z")

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I had bilateral jugular compression, so I had symptoms of Intracranial Hypertension, the crazy symptoms were all down to that …all gone now!  
Never felt taller- I’m a shortie so that would’ve been a novelty 😂

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