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sp8239
@sp8239

Posts: 1
Joined: Nov 30, 2018

Chronic sporadic facial edema

Posted by @sp8239, Fri, Nov 30 4:54pm

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.

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