Chronic sporadic facial edema

Posted by sp8239 @sp8239, Nov 30, 2018

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)

– 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.

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?

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