Idiopathic Angioedema

Does anyone have any knowledge of idiopathic angioedema. I was previously treated for anaphylaxis but have now been diagnosed with IA. I have had 3 occurrences within the last year where my tongue swells to 3 or 4 times normal size and I’m treated with adrenaline and hydrocortisine. Last time was 3 adrenaline injections. There is no correlation between the occurrences and I’m literally at my wits end. On top of this I tested positive for COVID this week so 10 days isolation as well. Any help, advice or anything would be appreciated x TIA #Fibromyalgia #HashimotosThyroiditis #Gastritis #IdiopathicAngioedema

I joined this site to try to "meet" other young people and people older than me dealing with chronic illness. I'm trying to learn to manage my life and my ambitions well and accept my limitations and I'd love to connect to others also on this path or long-timers who've already done this.  But it feels like the site is all either a thought-dump zone or a "answer my question" forum rather than somewhere to really connect--- am I in the wrong place?

I was starting to think I was the only person with idiopathic angioedema. Been dealing with this for over 10 years & seen several doctors but no one with answers of what, why, how to prevent it nor cures.
#IdiopathicAngioedema

When you have #ChronicIllness, your days are really varied – but usually within a certain framework. For example, I have chronic angioedema (tissue swelling) caused primarily by foods I eat and mast cell flares.  I don’t always know how much I will swell or what will cause it or which body part(s) will be affected. But, I can manage day to day knowing roughly what to expect.

However, when the unexpected occurs and you are a very complex patient, it can be strangely difficult to get answers and direction.

For example, recently I had some very bad throat swellings related to, I think, ingesting vanilla extract (which is a new allergy for me).  During my last episode I dosed up with all of my medications and benedryl put me to sleep, as it always does. I woke and had a feeling of lightning in my left chest and in my jaw. I tried and failed to convey this to my husband, who was sitting next to me.  Then the drugs put me back to sleep.  It was a very brief episode, but in the moment, I thought I was having a heart attack.

I refuse to go to the ER, because I can’t afford to pay 20% of the inflated medical prices there.  So, I consulted my trusty friend, Google instead.  I very quickly found “allergic angina” (also called Kounis Syndrome) to be a possible cause of my transient heart and jaw pain.

The next day I contacted my cardiologist and my allergy/immunology specialist. I am due to have a pharmacological stress test of my heart later in the month, but thought, of course, that my cardiologist should be aware of what happened. Their office said to tell my allergist. Well, of course, but my allergist will say to tell my cardiologist.

This is not the first time I have been caught between specialties and I can’t help but feel that it affects my care to fall in the cracks this way.  I also routinely find my specialists, who I have seen for years, often say things that indicate they do not really understand the challenges I face. For example, my cardiologist was surprised to learn I have Ehlers Danlos at my last appointment. I have had that diagnosis for a long time. He also was unaware that I had angioedema and mast cell activation syndrome. All of these were formally diagnosed years ago.

When I provide my history, I include everything, and I also include all of the medications I am taking to treat my conditions. But specialists seem to wear blinders to everything not directly in their specialty. When a problem hits that crosses specialties, it’s the patients who bear the brunt of this #Blindness.

I long for the day when all specialties treat us as whole people with the totality of our conditions.  Our care can’t help but be better for it.

Have you been affected by cross-specialty blindness? I look forward to reading your stories below.

#IdiopathicAngioedema

Well it happened.

This crazy swelling thing I do (#IdiopathicAngioedema) is like the chip that lives on my shoulder. It’s a weight, you know? At any moment this thing can pop up a derail the course of my day, or week. All my efforts to contain and minimize and smash the damn thing into nothingness seem like I’m trying to soak up the ocean with a napkin.

That’s not really fair though. I mean, this thing used to be all encompassing. Like, DAILY I would have these swelling episodes with itchy angry hives the size of dollar bills, and I’m not talking patches of hives I mean one great big GIANT red bump after another. The facial swelling has been so extreme that my skin would crack from the pressure as the burning screaming pain throbbed with even the slightest air pressure change in the room. There was a morning my son became nauseous at the sight of me (and he was 13). I have been unable to talk because of a swollen tongue on numerous occasions. There have been times where I sat in the waiting room at the ER spitting into a cup because my throat was so tight I couldn’t even swallow and it was effort just to breathe.

In the nearly six years that this thing has had it’s claws in me I have learned a few things. What to eat to have the best chance at minimizing the episodes. What to remove from my house so the chemicals wouldn’t effect me. What to launder my clothes in so that my skin would not be irritated. How quick to hug a person who has on perfume or cologne. When to drive myself to a location instead of riding with a friend because of the air freshener in their car. How to say NO to all the things you want to do because you are unsure if you’ll have to take back the YES you give and leave someone in a lurch at the last moment. What it feels like to stay awake all night because you don’t know if you will wake up in the morning.

I have fought, literally tooth and nail, to get SOME measure of healing and this year I saw improvement. The change in my diet was a major impact a few years back when the episodes went from daily to about every 6 weeks or so. Then after the publishing of my book last year they dropped off even more. I went a whole SIX MONTHS without a swollen face! It was a glorious reprieve.

So last night my beautiful streak was broken. As I was settling the tiniest into her bed I felt the telltale tingle that signifies the beginnings of an episode. My lip was burning and the fear that accompanied it was threatening to overwhelm me. Then all the racing thoughts. What did I do to upset my system? How had I failed? Did one my preschoolers touch me with something on their hands? Could it be something on the new shelf I got for the girls room? Did I put too much salt on my dinner? Is this the episode I have been waiting for, the “big one” that finally kills me? Who will watch my children if I go to the ER? Who will do all my jobs if I don’t show up tomorrow?

Over and over and over again the thoughts swirled and raced and raged through my head. My husband asked if I wanted some water and I couldn’t respond because the answers all spiraled into bigger questions and tangled up together so that I couldn’t even pick one thought out from the rest.

But here I am. It’s morning again. Somewhere in the night alone with my bible I remembered.

My pain has a purpose.

I don’t know what it is that keeps you up at night. I don’t know what makes your head spin like schizophrenic carousel or your body to rebel against you. But I DO KNOW that you are not alone. Our shoes aren’t the same size or style or color and I can’t walk in yours the same way that you don’t walk in mine. But I’ll walk next to you. And hold your hand.