Hi there! I was diagnosed years ago and saw Dr. Cognetti in P.A but decided not to do the surgery. For years I am struggling with fatigue, dizziness, extreme bouts of depression and anxiety, brain fog and especially in the morning feeling like I was drugged the night before and have so much trouble waking up and then feel like a zombie for at least the first hour of the day, can’t get going or think clearly. I had lyme disease in the past and mono (epstein barr virus) diagnosed with fibromyalgia because nothing else from the rheumatologist shows up. I am an active person and at times have all over body pain but mostly this fatigue is killing me and so greatly affecting my quality of life. I have sinus issues and my right eye is always hard to open and smaller, ears feel clogged headaches between the eyes. My biggest question is…can the vagus nerve be causing my heart palpitations and anxiety and depression? SSRI’s never help and I feel like I’m going crazy because I have been to every dr. and no one has any answers. Sorry for the long rant, I just feel so hopeless.
Poor you, it’s awful having several complicated diagnoses, strange symptoms & no answers from doctors…It sounds like you might have vascular ES with the symptoms of dizziness, trouble thinking clearly & clogged ears. The vagus nerve can cause anxiety, fatigue, and heart arrythmias. Vascular ES if areas of the carotid artery are irritated can cause arrythmias too. And the facial nerve can be affected by the styloids which can cause weakness in the facial muscles. Obviously there are cross over symptoms with Fibro (Ben’s Friends do have a Fibro support group too if you didn’t know?) You could also search for previous discussions where members have experienced fatigue as it has been mentioned quite often, it might help you feel less alone?
Have you had a CT with contrast done? That might well show which if any blood vessels are affected.
Would you consider the surgery now with Dr Cognetti now? He is a bit busier so not sure how long the wait would be…
I experienced much the same, and still do sometimes. Taking Lyrica (Pregabalin) is really helping - it’s only been two weeks but I am noticing a lot of improvement in terms of pain and fatigue. It does not help the vascular symptoms that I still have - like throbbing in the neck and loss of balance with bending and turning my head. But it is helping somewhat.
I am waiting for an appointment with a surgeon on Feb 9th and not even sure I’ll be able to get it here in Toronto, so I will eventually have to contact Dr. Cognetti also, probably!
If you do get a CT w/ contrast & find you have vascular ES, you may want to also contact Dr. Hackman in NC as he has helped a number of our members who have vascular ES.
I’m sorry for all your symptoms & pain. It sounds like getting your styloids removed could really help resolve some of them.
This sounds alot like what Im going through right now (compressed jugular vein). Highly recommend researching more on the vagus nerve and vagus nerve exercises. The vagus nerve exercises help me tremendously with depression and anxiety and overall well-being. Also, sleeping in a recliner has helped a lot too and I dont get the full ear feeling as much. Look up Suki Baxter Vagus Nerve. She has very informative videos! Hope this helps!
What you have described sounds just like my experience with IJV compression (vascular variant of Eagles Syndrome). From what I’ve learned so far, everything you’re describing could be attributed to vascular compression, either of your Jugular Vein, or Carotid artery.
As Jules suggested, getting a CT scan with contrast done, specifically requesting that they look for jugular and/or carotid compression, would be a helpful next step. Once I had that done, I was referred to Dr. Hepworth and finally found a doctor who seems to understand how all these pieces and symptoms are connected. Since seeing Dr. H I have been taking blood thinners, which dramatically improve my ability to function. That has not resolved my symptoms, but has increased the number of days when I’m at about 80% rather than 20% functional capacity.
I’m still in the middle of my medical journey, as my first surgery did not resolve my issues, so I have found a few coping mechanisms that seem to help, as well as some advice from my doctor. Maybe some of these strategies will be helpful to you as well.
- sleep with your head and shoulders propped up as high as you can manage. (or in a recliner as LoriBD mentioned). Other users here have suggested using a wedge pillow. I just stack regular pillows in a slope.
- take cold showers. - this dramatically improves my focus and decreases pain days. Start with 5 seconds and work up to a minute.
- never bend over if you can avoid it, always squat instead so you head stays above your heart.
- eat regular meals, don’t stuff yourself and don’t let yourself get hungry. (not sure why this helps, but it does). Avoiding rich foods also helps me.
- stay hydrated. I’ve found that water alone doesn’t do enough for me, so I take electrolyte tabs regularly in addition to drinking lots of water, about 64 oz a day. (I like Nuun brand electrolytes, as they don’t add sweeteners)
- keep your heart rate below 120 bpm. This one is super frustrating, as I love to be active, but I’ve had to adjust my expectations. When I do let my heart rate rise, I can always feel my heart beat in my head/neck and get pressure in my head. If I do too much, I will get severe pain in my head and neck later in the night.
- avoid caffeine. This, staying hydrated and taking blood thinners are the doctor recommended strategies.
- stop eating gluten - this made a dramatic difference for me, but doesn’t bother everyone.
I hope that’s helpful to you. If you do decide to go forward with surgery, make sure to see a doctor who recognizes and understands the vascular variant of ES. Doctors who don’t understand that portion may not remove enough of your styloid, as many doctors only consider the extra length to be an issue and just trim that off, whereas those of us with vascular variants sometimes need the entire styloid removed down to the skull base.
In case this might help… It’s been awhile, but I understand the fatigue & issues and have been out of it myself for more than a month.
Viruses can make things much worse. I was suffering for years, but post-COVID the tiredness and other issues on top of things made it much worse, and hard to tell which caused which symptom. It sounds like something similar here.
The Vagus nerve lies close to the internal jugular vein (IJV) and carotid artery. IJV and Vagus issues could explain the depression/anxiety. The brain normally clears out at night via the IJV, so I’d strongly recommend trying to find a different sleeping position-- log how you are doing to see if you can find one that tends to work better. It could be the side you’re lying on, but could also involve the pillow and neck rotation and flexion.
I’ve had grogginess my entire life before other issues, and actually have the opposite effect of thinking clearly first thing before the brain fog sets in once I move around with the morning routine, but I’ve also found I need to sleep in one particular way. Grogginess is a sign of sleep inertia normally. If a separate thing (ie: normal grogginess), it can be reduced by trying to sleep in 1.5h increments (ie: 7.5h or 9h a night + time to fall asleep), and you should be able to have a 25 minute nap without being groggy afterwards.
Headaches between the eyes could be a sign of high internal brain pressure caused by failure of the IJVs to drain properly. Would also cause brain fog, and heard that when it gets bad and if it is one-sided can cause slight vision delays between the left and right eye which could throw you off.
I second most of @MsBearShark’s recommendations, these help me as well (except for heart rate & caffeine as I have a rarer opposite (parasympathetic) reaction which can happen with the Vagus nerve).
When post-infection issues (fibromyalgia, tiredness) combine with others (vascular Eagle’s) it makes dealing with either much more difficult. I feel for how debilitating this can be, especially the tiredness. The only thing that’s helped me before is regular cardio exercise, and I know how hard this is to do when tired since I’ve been trying and failing to exercise daily for almost 2 years now. I’ve also noticed it can make things worse if I exercise when symptoms are bad. Neck position and posture are very important. It helps if you can get someone to help you do it & to spot you and help with form.
Have you tried eating more anti-inflammatory foods? A simple way to test is to avoid sugar, wheat, red meats, processed foods for a day or two and eat a bowl of blueberries and see how you feel.
You could also try to see if blood pressure is related, for instance from dysautonomia or blood pressure dysregulation. You could try flexing your legs and core for a short while to raise blood pressure and see if that helps with brain fog, a technique that people with POTS discovered. Sometimes I do jumping jacks when first getting up.
Hi @painintheneck , your story is similar to mine, I was wondering if things have improved ( hope they have) if not , have they become worse? Is what you have progressive?
My ( what feels like sleep inertia) or grogginess, or lack of oxygen to the brain, or however one describes it ,is getting progress worse.
What makes it worse is that I wait week after week for it to change, then suddenly,for a few days I am normal.
Then just as I start to lift from a darker mood - bang - I am flattened again.
I have been waiting several weeks now to improve and it’s not
It’s becoming unbearable because I am having difficulty working.
I hope you can come back with a positive story, some treatment, some drink or drug, or therapy that you can say improved your condition.
Fingers crossed
@painintheneck - I don’t know if you keep up w/ the posts on this forum, but we’ve recently become aware that Dr. Costatino in NYC does vascular ES surgery. It sure sounds like you have vascular (most likely IJV) compression. He’s closer to you than Dr. Cognetti. It would be worthwhile seeing him if it’s possible for you.
Hi Ms. Bearshark, sorry to hear of all your issues that seem to be caused by ES. When you say your first surgery didn’t resolve your issues - could you explain what was done please? did the doctor only trim a bit off? Thanks for the tips. I’m not sure with me how much of some vascular symptoms I have are due to ES or due to other things (eg. jak-inhibitor drug on for rheumatoid disease, RA itself, or covid effects etc). But thanks for the info. Hope things improve for you soon.
I had a left side styloidectomy and IJV angioplasty with Dr. Hepworth. He removed the entire styloid down to the skull base. I felt great for a couple weeks, then all my symptoms returned. I honestly can’t say if that short term improvement was from the surgery itself or the more intense blood thinners they put me on after surgery.
I did a follow up jugular ultrasound which showed my left IJV is open and flowing, but my right side is still compressed. I then had a catheter venogram done to check for constrictions elsewhere in my head and neck. That came back negative (other than at right styloid), but I am hypermobile and have hEDS so Dr. Hepworth ordered testing of my renal vein and iliac veins as well, which are common sites of vascular constriction in the EDS population. My renal vein is slightly compressed, but my iliac vein is completely occluded. I was told I need to get a stent in my iliac vein, and possibly have a second styloidectomy. Eventually I may also need surgery on my renal vein.
Hearing all that, and not having had much relief from the first styloidectomy, I have decided to see what I can do to improve the structure on my veins as a whole rather than patching up each spot that shows a problem. With the hEDS diagnosis, it seems that my body may not produce collagen properly, so I have started taking supplements from the Cusack Protocol, which are making a difference and in theory can make my veins less prone to collapsing in the long run. In addition I’ll getting chiropractic adjustments from a doc recommended by Dr. Hepworth who specializes in C1 vertebrae manipulations to reduce pressure on veins and arteries. I’m also doing PT with EDS literate practitioners to relieve pressure on the iliac vein, and exercises to improve stability in my neck.
So far, that combination of supplements and manual manipulation has helped significantly, to where I’ve even felt “normal” a few days at a time here and there and I’m down to 1 major pain day per month. I’m still struggling with fatigue, brain fog, POTS symptoms and exercise induced headaches, but I’m doing way better than I was in early spring. This path will be slow, with lots of ups and downs, but it seems to be headed in the right direction. I may still need a stent and more surgeries eventually, but for now I’m trying to be patient with these less invasive methods and am hoping I can at least reduce the number of surgeries I’ll need in the long run.
That’s a long answer to your question, but since it sounds like you’re dealing with other complicating factors beyond ES, I wanted to share the whole picture. Hope it’s helpful.
So pleased that you’ve seen some improvements with the alternative treatments, that’s great news! I hope that these treatments continue to help you & you get even more improvements 
Hi MsBearshark,
Thank you so much for your detailed information. You’ve had a very difficult time of it! It sounds complex and hard to solve ,but well done indeed taking on all alternative ways to try and help the situation - and great to hear you’ve having some success in terms of relief due to all your efforts. Sorry, I’m a bit thick understanding exactly the cause of your vein problem - but sounds like ES is the cause of it all… Thanks again - and wish you all the best for more recovery. Would be interested to hear how things go with you from now on. Take care 