u/Suspicious_Yam685

Age: 25
Sex: Male
Height: 5’9”
Weight: ~247 lb
Location: Utah, USA
Smoking/vaping: I vape/use nicotine. I previously used heavy caffeine/energy drinks but have mostly stopped/reduced.
Medical history: Juvenile nasopharyngeal angiofibroma/JNA as a teenager, treated in 2017 with right-sided sinonasal/skull-base surgery and embolization. Mild obstructive sleep apnea on sleep study. Anxiety has been discussed by doctors, but I am trying to understand if there is also a neurologic/ENT/nerve/autonomic explanation.
Current meds/supplements: This has changed over time, but I have tried/used omeprazole, hydroxyzine, vitamin D, magnesium, CoQ10, and testosterone/clomiphene-related treatment.
Allergy: Cefdinir listed after possible delayed reaction/rash/facial swelling concern.

Main issue:
For about 6 months I have had unexplained right-sided facial symptoms, headaches, chest symptoms, tachycardia/palpitations, blood pressure spikes, and abnormal sensory symptoms. My biggest issue now is that the right side of my face, right hand, and right foot feel like they are going numb or “half-asleep” pretty consistently.

It is not complete numbness. For example, if I put an ice pack on my right cheek, I can still feel cold and pressure, but I do not feel the texture/moisture/detail/temperature as clearly as I do on my left cheek. It feels like the sensation on the right cheek is “dimmer” or less detailed. The right cheek/jaw/masseter area has been the most persistent location.

I also have a right cheek/masseter-area lump/firmness sensation near the angle of my jaw. Ultrasound and CT have not found a discrete mass.

During episodes, my blood pressure tends to spike around 155/105 and then as the episode wears off it comes back down closer to 115/75. I also get adrenaline-like feelings, palpitations/tachycardia, dizziness/lightheadedness, and chest burning/stabbing sensations during some episodes.

Doctors/specialists I have seen:
- Neurologist
- ENT x3
- Primary care x4
- Allergist
- Cardiologist
- Spine and pain specialist
- Optometrist
- Multiple ER/urgent care physicians
- Physical therapy for about 12 weeks

Timeline:

Late Dec 2025 / early Jan 2026:
- Started with swollen/tender lymph-node type symptoms around the right jaw/neck/ear area.
- Developed right cheek warmth/redness/swelling sensation.
- Started having nausea, dizziness/lightheadedness, chest burning/stabbing pain, palpitations, heart-rate spikes, BP spikes, shortness-of-breath sensations, headaches, and tingling/numbness sensations.
- Pressing the right jaw/cheek/lump area seemed to trigger a rush of symptoms at one point: neck/face tingling, metallic taste, nausea, and adrenaline/anxiety feeling.

Jan–Feb 2026:
- Multiple ER/urgent care visits for headaches, chest pain, dizziness, paresthesias, and right-sided symptoms.
- Neurologic exams were repeatedly documented as normal.
- Chest pain workups were repeatedly reassuring.
- Migraine, occipital neuralgia, tension headache, anxiety/stress, GERD, and musculoskeletal causes were discussed.

March–April 2026:
- Continued right-sided headaches, right face heaviness/altered sensation, chest symptoms, palpitations/tachycardia episodes, and BP spikes.
- Cardiology workup was reassuring.
- I had multiple EKGs, a Holter/ePatch monitor, an echocardiogram, and a stress echocardiogram.
- I did physical therapy for about 12 weeks for possible TMJ/neck/posture/muscle involvement. It did not fully resolve symptoms.
- Gentle massage and especially gentle traction/suboccipital release, where my head is lightly pulled away from my neck, seems to slightly improve the all-around numb/half-asleep sensation.

May–June 2026:
- Right cheek/masseter lump sensation became a bigger concern.
- PCP felt some irregularity in the right cheek/masseter area but no definite nodule.
- Ultrasound of cheek/neck reportedly normal.
- CT maxillofacial with contrast showed right masticator-space surgical changes/artifact but no discrete mass or significant adenopathy.
- On June 30, I had a stroke-type workup at University of Utah for right-sided numbness. MRI brain was negative for acute stroke/bleed/mass. CTA head/neck showed no large-vessel occlusion, stenosis, or dissection, but incidentally noted a 2 mm broad-based left cavernous ICA aneurysm. I understand this is on the left and likely does not explain right-sided symptoms, but it has added to my concern.

Major imaging/tests I have had:

Brain/head/neck imaging:
- Jan 3 CT brain: no acute intracranial abnormality.
- Jan 3 CTA head/neck at Brigham City: report said no stenosis, occlusion, or aneurysm.
- Feb MRI brain with and without contrast: no acute intracranial abnormality, no mass, no abnormal enhancement; postsurgical sinus changes.
- Feb MRI brain without contrast for headache/face/arm tingling: no acute intracranial process.
- Mar CT head: no acute intracranial abnormality.
- June 30 CTA head/neck at University of Utah: no acute hemorrhage, no large-vessel occlusion, no intracranial stenosis, no extracranial stenosis, no carotid plaque, no dissection; incidental 2 mm broad-based left cavernous ICA aneurysm.
- June 30 MRI brain: no acute infarct, hemorrhage, mass, or acute intracranial pathology; minimal nonspecific punctate frontal FLAIR foci; somewhat small pituitary noted.

Spine imaging:
- MRI cervical spine: straightening of cervical lordosis, mild left/minimal right C6-C7 foraminal narrowing, normal cord, no major right-sided compression.
- MRI thoracic spine: age-appropriate, normal cord, no significant thecal sac or foraminal narrowing.

Face/jaw/ENT imaging:
- Ultrasound of cheek/neck/right salivary areas: reportedly normal soft tissues, normal right parotid/submandibular glands, no cystic or solid lesion.
- CT maxillofacial with contrast: extensive postsurgical right sinonasal/masticator-space changes and artifact, but no discrete mass, no significant regional adenopathy, parotid/submandibular glands unremarkable.
- ENT nasal endoscopy: postsurgical changes, mild stable sinus inflammation, no purulence. ENT felt sinus findings were unlikely to be the main cause of headaches.

Chest/heart/lung testing:
- Multiple chest X-rays: normal/no acute cardiopulmonary process.
- CTA chest for pulmonary embolism: negative for PE; heart/lungs/aorta/mediastinum normal.
- CT coronary calcium score: 0.
- Echocardiogram: normal LV systolic function, EF about 59%, normal RV, no significant valve disease.
- Stress echocardiogram: normal, no ischemia, achieved 10 METS, EF about 62%.
- Holter/ePatch monitor around 4 days: predominant normal sinus rhythm, average HR 86, max HR 158, very low PVC/PAC burden, no AFib/flutter, no ventricular tachycardia, no pauses, no AV block. Symptoms correlated with sinus tachycardia.
- Multiple 12-lead EKGs: mostly sinus rhythm/sinus tachycardia. One showed ventricular trigeminy/PVCs, but later Holter showed low PVC burden and no dangerous arrhythmia.

Abdominal/other imaging:
- CT abdomen/pelvis with contrast: unremarkable.
- Right upper quadrant ultrasound: unremarkable.

Sleep/pulmonary:
- Sleep study: mild obstructive sleep apnea, AHI about 12.7.
- Prior pulmonary function testing reportedly normal.

Bloodwork/labs:
- Multiple CBCs normal: no anemia, no leukocytosis, no thrombocytopenia.
- Multiple CMPs normal: kidney function, liver enzymes, electrolytes, calcium, and glucose generally normal.
- Multiple troponins negative.
- Multiple D-dimers negative.
- ESR normal.
- CRP normal in March; later CRP was within lab reference range.
- Lyme/Borrelia immunoblot negative.
- ANA negative.
- Rheumatoid factor negative.
- Thyroid labs normal: TSH/free T4/free T3 normal.
- A1C 5.4.
- Vitamin D low/insufficient around 27–28.
- Testosterone low/borderline: around 255 on one test and 303 on another.
- B12 358, methylmalonic acid normal.
- Folate normal.
- Celiac panel negative.
- Iron studies/ferritin generally normal.
- Lead and mercury normal/low.
- Urinalysis generally normal; June 30 urine was concentrated with mild ketones but no UTI pattern.
- 24-hour urine metanephrines/catecholamines normal.
- 24-hour urine 5-HIAA normal.
- Tryptase normal.
- N-methylhistamine urine normal.
- Prostaglandin metabolite urine normal.
- Leukotriene urine normal.
- VIP normal.
- Lipids generally good/low LDL, though advanced lipid testing showed LDL pattern B/small LDL and low omega-3 index.

Medications/treatments tried:
- Propranolol: stopped because it caused dizziness/lightheadedness and HR reportedly dropped into the 40s.
- Nortriptyline: did not resolve symptoms and seemed to worsen/spike HR.
- Amitriptyline: tried/prescribed.
- Sumatriptan/rizatriptan: tried/prescribed for migraine-type symptoms.
- Fioricet: prescribed at one point.
- Toradol injection: no meaningful relief.
- Methocarbamol: tried/prescribed.
- Diazepam: short trial, did not fix symptoms.
- Hydroxyzine: helps anxiety somewhat but does not resolve physical symptoms.
- Zoloft/sertraline: tried, did not resolve symptoms.
- Xanax once: made me sleepy but did not resolve symptoms.
- Omeprazole, Tums, Pepcid: helped reflux somewhat but not neurologic symptoms.
- Prednisone 5-day course after suspected delayed reaction/facial swelling/redness: redness improved temporarily, but numb/tingling returned.
- Cefdinir early on for lymph node/ear/sinus concerns: did not resolve symptoms, later listed as allergy.
- Physical therapy for about 12 weeks for possible TMJ/neck/posture/muscle involvement: did not fully fix it, but massage/traction seems to help a little.

After months of symptoms and a large amount of testing, I’m trying to figure out what pattern this sounds like and what direction to go next. I’d really appreciate thoughts on what diagnoses fit best, what might have been missed, what specialty would make the most sense to see next, and what tests or treatments would be reasonable to ask about.