I am a newly diagnosed ES (VES specifically) patient trying to navigate this experience. It has been a journey to figure out why I am sick, and I am so insanely grateful to find this community now. I am a local Coloradan and am beginning to work with Dr. Hep who seems to have amazing reviews from this community, as well as my new neurologist. I would love to connect with anyone out there going through this, hear any advice you have to share, or just commiserate. What is something you wish you knew sooner? Or you wish someone had told you?
Virtual hug to all of you,
Emily
smallgirlbigmountains
Before starting my journey, I wish I knew how underexplored, rare, and controversial this condition is, and how much of self-determination and self-advocacy is needed. There were moments I thought I would lose hope, because I knew exactly what had been going on with me and could find evidences all over the place from scientific medical articles to FB groups. But so many of the medical community in Canada not only ignored me, but even ridiculed and laughed at me, looked down at me and literally would mark me in their records as a “psychosomatic patient”.
So in the beginning of this journey it’s very important not to lose determination and sanity. But as soon as you gain traction towards the right direction, the vehicle becomes unstoppable.
Thank you vdm! That is so helpful. I had a similar experience being labeled “psychosomatic” or even hysterical. I have lost some really important people in my life, including my sister, for trying to force me into an eating disorder program. Doctors used to ask me all the time if I am eating, despite my main symptoms being severe nausea and vomiting. The medical industry is just so difficult, and as a young, scrawny female I have found it to be gut-wrenching, too. It is traumatizing going to doctors appointments knowing they would label me either with an ED or psychosomatic/hysterical, despite begging for help. I had one doctor outwardly blame it on my parents and my anxiety. I force my dad to come with me to my appts anymore so there is a man in the room and someone in my corner to vouch for me. Determination, hope and sanity are basement level low right now, but finding this community and connecting with Dr. Hepworth have given me a bit of hope…which is scary for me just because of how disappointed I have been over the last few years.
“So in the beginning of this journey it’s very important not to lose determination and sanity. But as soon as you gain traction towards the right direction, the vehicle becomes unstoppable.” That hit home, and I really hope you’re right.
Another observation from my perspective would be, there are times when the condition makes one feel they are dying. But the good news is that only in very rare cases real death may happen, mostly if the elongated styloid causes arterial dissection leading to stroke. And minor tears in the arteries and veins have tendency to self-repair over the course of a few months, esp.at young age, given there are no significant connective tissue disorders like vascular EDS.
Vast majority of cases, from what I know, is just what seems to be endless suffering, sometimes really bad suffering, lasting weeks until the inflammation subsides, and irritated nerves/blood vessels recover. It’s equally important to be prepared both mentally and physically for these episodes, e.g. avoid strenuous activities, take as much rest as needed, avoid unnecessarily physical exhaustion, and have painkillers/ice/anti-inflammatories ready.
Your gastrointestinal issues are most likely being caused by your vagus nerve being irritated by your styloids. Many of our members have been diagnosed w/ GERD & some have had unnecessary gastric or esophageal surgeries to try to correct their problems prior to being diagnosed w/ ES. The vagus nerve is the largest of our cranial nerves & controls MANY of the body’s functions. The link below will give you a two minute snapshot of the vagus nerve & it’s functions/dysfunctions.
This image shows how extensive the vagus nerve is. You can imagine it affects something along every millimeter of its course. The facial & trigeminal nerves run along similar courses in the face but only the facial nerve is shown here.
Welcome to the group. We are here to try and help you. Most of us have had a difficult diagnostic journey and had medics misdiagnose or gaslight us so you are not alone in that experience. Glad to see you now have good medical help and have begun your journey towards future recovery and better health. It’s not an easy journey so stay strong. D
I am also new here - just got diagnosed by my ENT after a CT scan yesterday. The diagnosis explains a lot about episodes I’ve had in the past. I’m very much in a state of shock right now. I’m glad to read all the information here. I’m in Canada, where surgery is not as available. So I’d like to try to manage with other therapies for awhile until I learn more. Thank you all.
@AS2005 I am a very big proponent of careful targeted physiotherapy. It helped me to get through the worst.
A lot of info about what I have been doing is on this forum, try to search for “physiotherapy” and those threads will pop up.
Upd: physiotherapy because elongated styloids irritate a lot of neck tissue, which may lead to deliberate avoidance of moving the neck, which may lead to the underuse of a lot of neck muscles, which may lead to their weakness and atrophy, which may lead to their spasms, which may lead to increasingly debilitating dis-ability of moving and controlling your body, further nerve and vascular system compression, and the cycle repeats. You get the point.
Hi welcome. Hope you find help and support here with this group. As a note of caution In my case turning my head (physio or not) caused styloid to affect JVs being compressed. So I have isometric exercises that work neck muscles without head turns etc. Mostly members on here concur on how to help this condition, but our own individual situations can vary a little. At least you have a diagnosis now and know what is wrong with you, that is the first important step in getting the help you need. D
Welcome! I also live in Colorado. Right now, you know everything I wish I had known – that Dr. Hepworth exists and that he can help you!!! It took me two years and a lot of frustration to find him. I also saw a lot of docs who wanted to write my problems off as anxiety, or TMJD (which I also have) or just plain hypochondria. I had surgery in June. Turns out for me that’s only the first phase, as Dr. Hepworth has now discovered that my jugular is also blocked on the inside. So now I need a stent, which required another procedure with another specialist out of state. But Dr. Hepworth has been with me every step of the way. I am so glad you found him!!
Thank you so much for this info!! I am so sorry you have had such a difficult time getting diagnosed…it seems to be a trend in this community, along with all other “invisible illnesses.” I wish more doctors had info on ES or, at the very least were interested in helping their patients find the right medical care. I seem to have VES, with IJV, where my jugular vein and vagus nerve are compressed from a twisted c1 and c2. Unsure yet if the styloids are elongated, but it is likely.
Before this very recent diagnosis, I tried everything from nerve blocks, Botox, Triptans (both oral and injectable), NSAIDs, PT, dry needling on my jaw (also TMJD), EMDR therapy, colonoscopy/endoscopy…the list is exhaustive. I was diagnosed with migraines, which I likely will still have even after treated for ES. Many, many, doctors I have seen over the last four years also blamed my symptoms on my anxiety, or likewise just labeled me as “hysterical.”
It is so hard to get better when no one even believes you are sick. I really hope you continue to get treatment that makes you better, with doctors who believe you. Please continue to update us!
@smallgirlbigmoutains - There is a very good chance your migraines will 1) become less intense 2) become less frequent &/or 3) go away entirely once your IJV(s) are no longer compressed. One of the major symptoms of IJV compression is migraines, & the cause is IH - intracranial hypertension i.e. high blood pressure in your brain because the blood cannot flow out of the brain at the rate it needs to so it backs up creating that pressure.
Anxiety is also a symptom of ES as it’s controlled by the vagus nerve & when the vagus is upset, a multitude of symptoms can result w/ anxiety being one of them. I expect both your digestive & anxiety issues are vagal related. When your vagus nerve recovers, those symptoms are likely to slip away over time along w/ other symptoms that may not be as bothersome.
Interesting info, @Isaiah_40_31. Am finding out more and more every time I pop onto the site!
Interestingly and maybe connected; I had a fundoplication 5 years ago after years of acid reflux. I actually had a large paraoesophageal HH so it definitely needed doing. I also now realise my back molar dental problems were likely caused by the acid reflux and I am having another extraction next week (no more root canals for me thank you!).
Has anyone else had this weird thing: when I swallow, I have a longish gap before I can swallow again, ie if I try to swallow immediately or within 30 seconds, I cannot physically do it? Weird I know!
I do have the same thing with swallowing, not sure it’s anything to do with ES though as I’ve had both styloids removed, & never really noticed swallowing issues when they were in! I think with me it’s sort of an anxiety thing- if I think about swallowing too much, I can’t
maybe just a delayed nerve conduction? Does seeing stars when you turn your head also tie in with Eagles? I get that a lot , although I can’t turn my head much, am having to turn my body around to say, look behind me now, both sides but worse on left. This is one long learning curve for me x
@Mcwelly I’m not a doctor, but stars also might be a sign of retinal detachment. Might be caused by constant high pressure in the eyes. I’d see a doctor for this, as retina detachment if not treated may lead to blindness…
Welcome to the forum, and congratulations on getting a diagnosis and finding Dr. Hepworth. I’m in exactly the same boat as you, same symptoms and diagnosis. It took me 10 years of symptoms and 3 years of intensive advocating, misdiagnosis, a battery of different drugs and many many doctors visits to finally connect with Dr Hepworth. Having a clear understanding of what is going on in my head and reading others stories here has helped enormously to find coping mechanisms while awaiting surgery. I too have been diagnosed with migraines and various stomach ailments, all of which have subsided substantially since Dr Hepworth put me on blood thinners and my neurologist prescribed nortriptyline.
I’m also in Colorado and was originally scheduled for surgery in late March, but have managed to get in earlier through the waitlist (by calling regularly and making it clear I would take any opening that presented itself) and am supposed to be operated on this coming weds.
I recently put up a post called “Coping mechanisms for jugular compression” that outlined the actions that help with my symptoms and there are some great responses from others here with additional ideas that might be helpful to you.
I’ll be out of commission for a bit starting weds, but if you’d like to connect to discuss or have some local support, feel free to DM me.
maybe just a delayed nerve conduction? Does seeing stars when you turn your head also tie in with Eagles? I get that a lot , although I can’t turn my head much, am having to turn my body around to say, look behind me now, both sides but worse on left. This is one long learning curve for me x