Doctors stumped about source of my angioedema. Any ideas on what I should do?

Other conditions
1

Hello,

Last month I started having uncontrolled and seemingly random swelling in the neck area that gives me incredible anxiety as I am nervous about my throat closing. During the first instance, I was on a business trip in Mexico and everyone assumed it was an extreme allergic reaction and took me to the emergency room where they administered an emergency dosage of hydrocortisone to my back. Upon returning from the hospital, we noticed two possible insect bite marks on my neck.

The swelling receded for 1.5 days and then returned. Now the swelling has about 2 episodes a day for the last month, doctors have tried antibiotics, steroids, and antihistamines to no avail. I have tracked meals, and times and it can be all over the place but the more intense swelling occurs around 11:00 p.m- 2:00 a.m.

The swelling is sometimes concentrating around the neck, sometimes eyes/forehead, and sometimes along my lips and jawline. It is constantly moving. When the swelling occurs I experience minor discomfort in the stomach and the swelling is accompanied by extreme gas where I burp approximately 15 times per minute during the onset of the swelling.

When I swell, the pounding in my ears gets increasingly loud, my ears feel blocked off, I have trouble hearing, and my neck pulses and visibly moves with each heartbeat. I am often getting migraines and extreme dizziness.

In addition, the lower half of my arms and legs get a tingly sensation and feel numb. My knees and vaginal area also occasionally swell with each episode (about 2x a week).

Prior to this month-long persistant angioedema, I have had a host of medical issues including constant gastrointestinal distress (extreme bloating), appendectomy (12 years prior), 2-years of pounding in my ears, migraines, insomnia, anxiety, joint pain, and occasional trouble gripping things with my hands, suspected auto immune disorders with a family history related to Rheumatoid Arthritis. Two weeks before the initial first episode, I had stopped taking birth control for the first time in 12 years to treat melasma, not sure if this is a factor.

I am trying to determine the cause of this and doctors here keep doing basic bloodwork that keeps coming back as normal so it does not seem relevant to me. My blood pressure is normal and my oxygenation level is fine. I am also not convinced that month-long angioedema is allergy-related considering I have been in two different countries throughout this experience and it came on so suddenly.

Any ideas on what I should be testing for?

2

I have had frequent attacks of angiodema for years, and also anaphylaxis on 4 separate occasions.
I am allergic to certain foods including kiwi, but also have also had attacks which are idiopathic which means no cause is found.

During my attacks I get lip tongue eye and facial swelling which goes down within 24 hrs max and severe attacks were treated in the emergency room with adrenaline, hydrocortisone, nebulisers and antihistamines with good effect.

My allergy unit gave me a regimem to follow and I carry two epipens. I take ceterizine 10mgs twice daily, atarax 25mgs at night and piriton 4mgs when necessary which seems to keep the symptoms under control.

Not sure what you are describing is actually angiodema.

3

Thank you so much for replying. I have gone to an immunologist and allergist last week and they have ruled out allergies now.

I am beginning to suspect it is not an angioedema either but am not sure what to advocate for an what kind of tests I should be asking for. My swelling seems to be linked with crackling noises in my ear and my neck is visibly moving with each heart beat during outbreaks. At present, I am beginning to think its a health issue mimicking an angioedema especially since the steroids and antihistamines did not have any positive effect on the swelling.