Undiagnosed Episodic Unilateral Facial Swelling

[vagabondule]

Hello,
I am new to the forum. Please provide any tips that may help me with the undiagnosed condition I am facing. All details are below:

BASICS:
Age: 44
Sex: Male
Height: 6 ft
Weight: 190 lbs
Duration of complaint: 7 months
Location: NY
Existing relevant medical issues: None
Current medications: Finasteride 1 mg, once daily; Minoxidil 5%, 1 ml twice daily for androgenic alopecia; Ibuprofen 400-800 mg as needed for migraines.


SUMMARY:
-EPISODIC [12 episodes in 7 MONTHS; duration: 3 to 19 DAYS; gaps: 5 DAYS to 6 WEEKS] UNILATERAL [RIGHT] facial swelling involving VARIOUS areas of the RIGHT face in each episode:

- RIGHT CHEEK (starting from the bridge of the nose and expanding to the lower jaw) [Episode 1, 2, 3, 4, 7, 11]
- RIGHT UPPER-LIP [Episode 2]
- UNDER & LATERAL to the RIGHT EYE (eye-lid currently NOT involved) [Episode 4]
- RIGHT FOREHEAD around the EYEBROW (eye-lid currently NOT involved; though it is pushed down by the swelling above) [Episode 5]
- VERTICAL swelling on the RIGHT FOREHEAD, from nasal bridge approaching the hairline [Episode 5]
- HAIRLINE on the RIGHT FOREHEAD [Episode 6, 7]
- CHEWING MUSCLE of the RIGHT jaw in front of the ear [Episode 8, 9]
- RIGHT JAWLINE to the RIGHT of the chin [Episode 10]
- RIGHT side of the RIGHT corner of the lip [Episode 12]


- SELF-RESOLVING

-NO OTHER SYMPTOMS:
-- NO pain/tenderness, itchiness, erythema.
-- NO tingling/numbness/paralysis.
-- NO palpable hard mass
-- NO fever
-- NO headache
-- NO nasal congestion, runny nose or any other upper respiratory symptoms
-- NO troubled breathing, swallowing or eating
-- NO pain in gums or teeth while chewing or otherwise; the Dentist did not find anything remarkable during his evaluation, and read of panoramic dental x-rays.
-- NO fatigue
-- NO unintentional weight loss

-Visited 8 SPECIALISTS (PCP, Dentist, Oral Surgeon, Head & Neck, Ophthalmologist, Rheumatologist, Allergist, Dermatologist) across NYU Langone & Mount Sinai, NYC

-NO DIAGNOSIS yet

- NO TRIGGERS identified

- CT scan of sinuses, face MRI, dental panoramic X-rays, and blood & urine work has NOT revealed anything conclusive

- ANTIHISTAMINE (Allegra) & ANTIBIOTIC (Augmentin) treatments have NOT worked


TREATMENTS TRIED (without any noticeable effect):
- 10-day course of oral antibiotic Augmentin
- Zyrtec, Benadryl, Allegra
- Flonase
- Ibuprofen & Asprin
- Heat & Ice

HISTORY:
- NO PERSONAL or FAMILY history of allergies or angioedema; no exposure to new foods or chemicals; no travel. Moreover, Zyrtec, Benadryl, Allegra, and Flonase did not *seem* to improve symptoms
- NO PERSONAL history of sinusitis
- NO change in medication
- NO trauma


AUTO-IMMUNE:
- FAMILY HISTORY of auto-immune: [Vitiligo (Mom & both maternal grandparents), Grave's disease (maternal uncle), Diabetes (mom), Alzheimer's (maternal grandmother) etc]
- PERSONAL HISTORY of auto-immune: Alopecia Areata since 2017


CANCER:
- FAMILY HISTORY of cancer: Maternal aunt died of Lymphoma
- NO PERSONAL HISTORY w/ cancer


RECENT VACCINATIONS:
- COVID-19 (Moderna) - April 2021, May 2021, Nov 2021
- Tdap - Sept 2021
- Flu - Oct 2021
- HPV - Sept 2021, Oct 2021

[AnnieBrooke]

Do the doctors you have talked to about this understand you are using Minoxidil? It can cause facial swelling and also swelling of other parts of the body, too.

[vagabondule]

Hi AnnieBrooke, I have been using Minoxidil for more than two decades. I have never had any adverse effect to it. Also, when I got my first facial swelling episode in December 2021, I paused all my medications, including Minoxidil and Finasteride and Ibuprofen for 6 months. I did not notice any positive changes, so I started taking Finasteride and Minoxidil again this month.

[Kira_95_il]

Was anything identified in your allergy test? Also, are these symptoms change in any way as more time passes? (episodes getting longer/ worse/ more frequent)? Were your salivary glands, and tsh levels tested? As you have a family history of thyroid issues, i would recommend seeing an endocrinologist. Maybe even a neurologist - to make sure theres no inflammatory damage to your facial nerves. Good luck and keep us updated!

[vagabondule]

Nothing was identified in my allergy test except a mild allergy to pine, mice and roaches. Also, I am not quite sure how thorough the test was. It was a pin prick test with only a dozen allergens. Episodes have gotten longer, though similar frequency and intensity. My oral surgeon said that it cannot be because of salivary glands. My head and neck surgeon has ordered an MRI of my neck to rule it out - I am waiting for my next intense episodes. The last episode was not intense enough for the MRI. I have no seen an endocrinologist, but my Thyroid levels were checked in Sept 2021 by my PCP and were found normal. I have not seen a neurologist, but given the lack of pain, atrophy, weakness, paralysis etc, I didn't think of that speciality. But perhaps I should see one anyway to make sure long term I am not incurring damage to any nerves.