Chronic sporadic facial edema
Hey all,
I've been dealing with a constellation of debilitating symptoms for several years and am finally zeroing in on this likely being an ENT/oxygenation issue. I was hoping to run this by the forum to get some feedback on whether my symptoms really can be attributed to an ENT problem.
Primary symptoms: fatigue, 'brain fog', swelling (most obviously in the face but I believe it's generalized), lax and discolored skin, dark under eye circles, chronic nasal congestion, exertion 'intolerance', throat-clearing tendency; I notice the mental and physical symptoms occur in tandem and the onset of physical symptoms often results in me looking tired, angry, and 5-10 years older than when they're not present (which is extremely disconcerting and, frankly, ruining my life)
Secondary symptoms (possibly unrelated): skin sensitivity, highly prone to acne, sometimes high tendency to sweat even in very low temperatures (could be due to reliance on large amounts of caffeine)
Observations:
- Unrefreshing sleep. I almost always wake up completely exhausted, with a headache, and often looking like someone beat my face with a concrete block (I wish that were an exaggeration...).
- Cannot exercise safely. Exercising consistently will intensify symptoms over a period of several weeks until they're so bad that I can no longer function. I've attempted to restart an exercise regimen and been forced to quit it many times over the past 3 years. Usually hit somewhere between the 6 and 8 week mark before it's so bad that I have to stop.
- After exercise, within 0.5 to 2 hrs: noticeable increase in swelling (generalized). This has always struck me as really odd. I don't know anyone else who has the same reaction to exercise. I've been observing it for at least the past 7 years.
- Zyrtec and Flonase provided tremendous relief for about 1 week after I started taking them a few months ago. The effect has since diminished and they're no longer effective.
- I never appreciated it until I started paying attention and felt the difference initially created by Zyrtec and Flonase, but I spend most of life quite congested. Even during the summer months.
- Noticeably increased congestion when I lie down. Worse when on my right than left side.
- Adderall 5mg provides almost immediate relief. Eliminates all mental and physical symptoms (think clearly, look far less tired, and my face debloats completely). I don't like using it and do so very infrequently, when necessary. I've been working through a prescription I've had since May and I don't intend to refill it. I looked it up and was surprised to discover that one effect of Adderall is to improve breathing. Anecdotally, I do feel less congested when I take it.
- Walking or moving in general will resolve symptoms, physical and mental, for the duration of the movement. However, they will often resume as soon as I'm stationary again.
- Drinking any hot beverage causes swelling.
- More generally, high heat seems to make all symptoms much worse (particularly dark eyes, swelling, and fatigue).
- Sometimes experience dizziness/lightheadedness moving from sitting to standing.
- 5-10 minutes of conscious deep breathing seems to resolve symptoms for a short time.
- Constraining my throat in any way increases brain fog and facial swelling (two cases in which I've noticed this: barber cape when getting a haircut and wearing a tight collar on shirts).
I've seen one ENT already and he observed a deviated septum in both nostrils and a swollen tonsil (that latter is an acute issue; wasn't present in a physical examination done a month prior).
Are there any other ways for the airway to be obstructed that I should be thinking about testing? Do the above symptoms line up with an ENT problem? I think many of them are likely related to obstructive sleep apnea as well. I have a sleep test and an appointment with a second ENT already scheduled. Really just looking for feedback on whether I'm getting close to a unifying etiology. The swelling and exercise intolerance issues in particular have always struck me as baffling and not easily accounted for by any common diagnosis.
Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.
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Hello, @sp8239. Welcome to Mayo Clinic Connect. I'm sorry to read about your symptoms and struggles.
While we wait for other members to respond- I'm interested to know what your sleep study results revealed and when is your next appointment with your ENT? Are you thinking about having your deviated septum fixed?
Hi!
I could have written this myself! Please tell me you figured out what is going on in the 7 years since you posted?
All of my symptoms come as a package deal and pop up intermittently, yet consistently and reproducibly. I have facial swelling, better when I’m moving, bad when I sit or especially lie down. I always wake up with a headache and facial swelling to the point it looks like I was in a car accident. I look much older when my face swells. I get concurent nasal congestion, yet don’t have allergies per the allergy doc. I get extreme cognitive slowing from sitting or lying down. I get random temperature flushes. Tightness on the neck makes things worse. Oh and headaches of course. If I could just spend my life always moving, I’d be fine. I don’t have acne but I get styes when my face swells- which seems close enough. I also struggle to sleep.
So far my docs found jugular compression from my Sternocleidomastoid muscle impeding the venous drainage from my face and brain. Conservative measures have failed. A part of me is worried that it isn’t the whole picture because I don’t have classic symptoms for this condition. Most people with jugular compression get dizzy with head rotation and don’t have problems sitting or laying. While head rotation makes things worse, I never get dizzy.
Please please please tell me you found answers and are better!
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1 ReactionHi @gh2347 and welcome to Mayo Clinic Connect. Your symptoms sounds super uncomfortable and I imagine scarey. I am glad you are here to discuss with others.
I am tagging @sp8239 who originally created this discussion so they have a better chance of seeing your comment you wait for others to respond.
You mention some consistency and reproducibility with your symptoms. Also, that doctors have found muscle compression that may be a culprit. What sort of trends/patterns do you notice? What doctors have you seen, and what do they think may alleviate your symptoms? Have you tried PT?
@sp8239 I hope to hear from you.
In case anyone finds this post also looking for answers, I’ll post what I’ve discovered so far. Im not better yet so take this with a grain of salt. It seems like my sporadic facial swelling/cognitive slowing/morning headaches/etc are from jugular compresssion from my sternocliedomastoid- and possibly omohyoid. This is a very newly discovered condition and a lot of docs practice medicine without recognizing that new conditions can be discovered. Don’t expect your primary or neurologist or ent to know about this condition. It’s best labeled and googled as a “jugular bow hunter syndrome”
Dr. Cha at the Univerisitybof Minnesota Fairview is the doctor you want. She’s doing the research and also is incredibly nice. Mayo specifically sent me to her because they don’t treat this. Expect a long wait time. I waited 11 months for my appointment and now I’m waiting a few more months to get worked in for imaging and injections. However! When she was in the room, she was very present and did not rush. She spent well over an hour going over my history and examining me.
Discovering this condition requires imaging to be done with the head turned into a position that causes symptoms. It doesn’t show up on images obtained in the neutral position. Also DONT HOLD YOUR BREATH DURING THE IMAGES. Holding your breath causes the jugular to stay open instead of collapsing which means you’ll end up with images that don’t represent real life- unless you spend your life breath holding I guess. I’ll attach a photo of my collapsed jugular