Idiopathic Angioedema

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Idiopathic Angioedema
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    Community Voices

    😂this one hits too close to home😂

    <p>😂this one hits too close to home😂</p>
    1 person is talking about this
    Community Voices

    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

    2 people are talking about this
    Community Voices

    How do I use mighty to actually connect to others? #Fibromyalgia #IdiopathicAngioedema #Migraine #ChronicPain #FoodAllergies

    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?

    4 people are talking about this
    Community Voices

    Someone else actually has idiopathic angioedema???

    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.

    3 people are talking about this
    Community Voices

    Healthcare Providers Are Drug Pushers

    <p>Healthcare Providers Are Drug Pushers</p>
    18 people are talking about this
    Community Voices
    Community Voices

    Sending Good Week Vibes to Everyone 💜

    <p>Sending Good Week Vibes to Everyone 💜</p>
    Community Voices
    Community Voices

    Flailing Between Specialties When the Unexpected Hits

    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.


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