I’m trying to figure out if vascular Eagles can explain some of my most bothersome symptoms at the moment and would really appreciate any input. I was recently diagnosed with EDS and have a laundry list of co morbidities that go along with it- Eagles likely being one ( calcified styloids and positive eagles questionnaire).
Currently one of my most uncomfortable symptoms is the neck compression I feel at night. It seems to get worse as the day goes on and peaks when I am trying to sleep. This has led to significant insomnia, as I am constantly repositioning my head in hopes to finding a comfortable position. What works one night, may not work the next. I know for sure that lying on my sides is rarely an option for me anymore but sometimes I am more comfortable laying more upright and other times my head has to be flat on the bed to get relief.
I see a lot of people on here have more success with an upright position but I’m curious if they also have to lie flat at times? I recently watched a webinar on venous congestion where the experts talked about having to lie flat every couple of hours in order to open up the IJV. Does that ring true for anyone? I likely also have intracranial hypotension but feel like fluctuating pressure is actually what’s happening.
Along with the neck compression, I get red hot ears and trapezius pain. Is this eagles too?
Is there any head position that helps relieve this compression? Ie moving the lower jaw forward etc? I’m desperate for some relief as I try to get local physicians to treat me.
So sorry that you’re struggling to sleep, it makes dealing with the daily pain of ES as well as day to day activities really hard.
It does seem to be quite hit & miss with what helps people, the angle of the styloids can vary so much…I had bilateral IJV compression, so had head and ear pressure which would increase through the day. I did have to sleep semi-upright to help the pressure, & I used a V-shaped pillow too as that seemed to take the pressure off the sides of my neck. I think that I couldn’t tolerate pressure on my neck partly because of the compression and also the nerve pain I was getting.
Others who’ve researched the jugular veins have found that the veins open up when laying flat, so this could be why sometimes you find it helps. @anon67578920 has said that if you sleep on your front with your head turned to the side it can help make space for the veins.
Also I think other members have noticed pushing their jaw forward can help, it varies for people though. Hopefully someone else will chip in!
@Andrea - Is the webinar you referred to the one Dr. Hui hosted back in May? If so, I’ve watched that but don’t remember the reference to lying down flat every few hours. I’ll have to make the time to listen again.
I do agree w/ @Jules that what works for each person as far as a comfortable sleeping position, especially w/ vascular ES, can vary. ES symptoms seem to come & go so a position that’s comfortable for awhile can become uncomfortable at some point. I suspect this is in part what you’re experiencing.
Red ears are an uncommon ES symptom but have been mentioned on here before. They are caused by irritation to the trigeminal nerve. The trapezius pain can come from an irritated spinal accessory nerve which runs through the sternocleidomastoid muscle in your neck & into your traps. This nerve & the trigeminal are two of those commonly irritated by ES.
Something you can try for relief is getting an ultrasound guided injection of lidocaine & cortisone into the tonsillar area of your throat. For some of our members this has provided nearly complete symptoms relief for a few days to a few months. Unfortunately, there have been a few people it didn’t help. Another option is getting an prescription for a nerve pain medication. These can take a few weeks to begin helping so they do require patience.
Thank you @Jules and @Isaiah_40_31 for your replies.
Yes, that is the webinar. I went back and you are right, it wasn’t clearly stated about lying down and opening up the IJV. Dr. Ames discussed the glymphatic system and how the brain drains its waste products and I think I must have pieced the rest together from other groups. I can’t remember where I hear what anymore- it’s another frustrating symptom!
I somehow managed to get a decent nights sleep last night although im not sure I know how to replicate it. I’m grateful for the rest regardless. Does the lidocaine injections help with the feeling of compression or just with pain? I don’t have a whole lot of neck pain per se- although I have chronic pain in my back and head so it may just not be at the forefront for me. What bothers me is the actual feeling of compression, as if it is affecting my breathing. I know my sPO2 dips down at night from episodes of obstructive apnea (not enough to qualify for a diagnosis of sleep apnea) but I’m not sure the actual etiology.
Hey there, I think the lying down was from caring medical… I think he said five minutes every hour.
I found I needed to lay more flat when sleeping and that was helpful. So sorry for your pain. Insomnia makes everything worse (((. Hoping you find relief.
The lidocaine/steroid injection will help relieve pain. I don’t expect it will help the compression feeling unless that is being caused by irritated nerves. Interestingly, one manifestation of nerve pain is a feeling of pressure. I had this at the back of my tongue as one of my ES symptoms. It was very uncomfy & annoying.
Agreed! I have both a nerve med (low dose at night) and injections into my throat at Northwestern every 5 months or so. It definitely helps!!!
I’m glad you have a regimen that is helping w/ the symptoms that have remained since your ES surgery @JPB. Thank you for sharing.
Yes, probably so. Thanks for clarifying that!
It definitely seems like things change on a dime because im able to lie down again without the uncomfortable pressure in my neck. The pain is now more trap/ chest but I’m thinking that is more EDS related than eagles.
You’re not alone, I switch pillows at least 3 times a night and go from flat to reclined I try the dudes but not successfully. I can’t remember when I had a full night sleep
Darn weight gain on amitriptyline though - I need to curtail that :).
Oooh, maybe I can use that as an excuse