Please pray for my husband Update

[dirty ethel rackham]

Dh has been having these sudden attacks where his eye swells shut.  He gets an itchy watery sensation and then it pretty much swells shut in 30 minutes.  He's had 6 of these since April.  We've been to urgent care a couple of times, the ophthalmologist 2 times, and our family doctor.  We can't find a cause since it happens at work and at home, when he's been inside, when he's been outside.  These have been getting progressively worse.   He has less than 30 minutes before he can't see.  The last couple times, both eyes swelled shut.  

Tonight, just after we finished dinner, he went into the house to get some Benadryl since he felt the sensation coming on.  Within 10 minutes, both eyes were swollen shut and his breathing became a little labored.  We went to the ER and they were more concerned that his throat and tongue appeared swollen - a new symptom.  After administering a steroid, Benadryl, and 2 shots of epinephrine, the swelling hadn't gone down.  They've admitted him to the ICU due to concerns that if it gets worse, his airway could become compromised.  They did give him another anti-inflammatory treatment and it appeared a little better.  His breathing was so much better.

He kicked me out and made me go home since I don't have anyone to take care of the dog.  He is in good hands tonight but I am worried that this keeps happening and we don't know why.  The ER doc thinks it might not actually be an allergy but this other type of angioedema that is either ideopathic (meaning they don't know why it happens) or this hereditary type, which may be progressive.   

If you could keep him in your prayers, I'd really appreciate it.  

UPDATE:  We are back home.  The swelling subsided enough overnight that they didn't see a need to keep him.  They sent him home with a prescription for steroids, Pepcid, and to get more OTC Benadryl.  We also need to call an allergist specializing in anaphylaxis, even though we can't find any evidence that it is an allergy and that it did not respond at all to the epinephrine.  They said that mentioning being in the ICU should get him in within a week. If it returns, he needs to go straight to the ER.  So we are devising plans for how to make that happen if he can't drive.   They did run a test to see if it is this hereditary angioedema (HAE) but those results won't be available for a couple days.  What makes me skeptical of it being HAE is that it comes on really suddenly - like 15-30 minutes from feeling perfectly normal to eye swollen shut.  

Edited July 8, 2023 by dirty ethel rackham
update

[wintermom]

That's really scary! So sorry you and he are going through this. It's good he's in a safe place now, and can be monitored.

It sure sounds like some powerful allergic reactions. Does he rub his eyes when they get  itchy and watery? Is it possible that he's been using something different on his hands that are being transfered to his eyes? 

I hope that you all can find out a solution to prevent these attacks in the future. 

[Kareni]

Sending good wishes for your husband and you, @dirty ethel rackham, and hoping that a cause will be determined.

Regards,

Kareni

[Junie]

Praying that they can solve this!

[fraidycat]

I hope he can find some answers and figure out why it happens. 

[KSera]

I’m so sorry, that sounds very scary. I’m really glad they admitted him so they can keep watch. I hope that they figure it out overnight and can prevent it from happening again. 

[sbgrace]

That is so scary. Praying he stays stable and they find a cause and effective treatment. 

[Melissa in Australia]

Sending positive thoughts

Huge hugs

[Kassia]

Also sending positive thoughts.  That is very scary, but I'm glad he's in the hospital being monitored closely and cared for.  Hope you can get some rest and this is figured out soon.  

[Laura Corin]

Thinking of you.

[scholastica]

Praying.

[Ginevra]

I hope they figure it out quickly and can stop it from happening. 

[TexasProud]

Praying hard that they figure it out!!!  So scary.

[Pawz4me]

Tons of good thoughts. I hope he recovers from this episode very quickly.

FWIW, in case you're interested in possibilities -- there's a type of autoimmune angiodema that typically starts during adulthood.

[Tenaj]

Praying!

[saraha]

That sounds scary! Prayers for you guys!

[Lilaclady]

Much prayers for wisdom for the medical team so they can get to the root cause and treat him effectively. Prayers for you and your husband. 

[Starr]

Praying for both of you. 

[ScoutTN]

Praying!!! 

[mom31257]

Praying for you both!! 

[Scarlett]

So sorry! That sounds so scary. Hoping they get some answers soon.

[MercyA]

I am so sorry! 

My SIL has an allergy to heat, especially when going from very cold temperatures to very warm temperatures. Once she was out running in the winter and when she came inside her throat started to swell shut. She managed to dial 911 and then passed out. IIRC she had to take antihistamines daily for a long time. I get heat urticaria--hives from heat, and they used to be very severe. Maybe something to consider, although it sounds like it happens in all temperatures for your DH.

Hoping they can pinpoint the problem very soon.

[CTVKath]

Praying for you and  your husband. I hope the doctors can figure out what is causing it.

[Harriet Vane]

Praying 

(((Ellen)))

[mommyoffive]

Oh how terrifying.  I hope that the doctor can tell you why it is happening and get a care plan in place.

[Terabith]

Praying for both of you 

[kbutton]

Oh, gosh, that's frustrating and scary! I prayed that this will get sorted and treated quickly. 

You might look for a an allergist/immunologist that is mast-cell disease competent, just because one that can handle those sorts of things is one that will likely be curious enough to help find a solution if it's something relatively novel. 

[DinCO]

Praying that the doctors can figure out the cause and your husband can get properly treated.

[klmama]

Praying for your dh's recovery, wisdom for the medical staff, and strength for you.

[Hannah]

Sending good thoughts and hope his medical team figures it out soon.

 

[Kassia]

Thanks for the update.  I'm glad you're home but wish more had been resolved.  I know how stressful it is wondering if/when an emergency is going to happen. 

[-----]

nm

Edited September 1 by kathyl

[TexasProud]

Glad he is home. Praying you get some answers you can count on.  So frustrating. 

[Annie G]

Glad he’s home, but with no answers it has to be scary…you don’t know if it’ll happen next month or in the next hour. 
Dh had some stress reactions that gave him swollen tongue and impacted his breathing… could your dh’s be stress related? 
I hope he can be seen soon and gets some answers. 

[Melissa in Australia]

Hugs

[Not_a_Number]

How scary! I hope you get this figured out.

[dirty ethel rackham]

Thank you all for your prayers and good thoughts. 

We don't know if it is stress related.  It doesn't appear so.  It has happened at work (at a job he loves) and at home.  It has happened when totally relaxing or when we were trying to get stuff done.  He is one of the most even-keeled people I know who doesn't get rattled and knows how to let things roll off his back.  He is a calming influence on me (unless he is the reason for my stress 😄)

[Carol in Cal.]

Still alarming, but steroids are amazing for this kind of thing.  I sure hope it doesn't come back.

[Katy]

It’s not stress. Something is triggering a huge release of histamine. It might be allergies, it might be many things. I’d be concerned about Mast cell reactions and histamine intolerance, mostly because I had anaphylactic reactions to many things for years. Does he have a history of other allergies? Does he eat a lot of high histamine foods? Pork, cheese, aged proteins, meats?  Alcohol, wine, vinegar? Is he regularly dehydrated? 
 

When I have too much histamine I find DAO (a supplement of the enzyme your body makes to break down histamine) is super helpful. I’ve bought it many places. It was initially available only from pork sources but now there is a vegan version derived from pea sprouts that’s even more effective. I buy it from Amazon. 

I also found that 4 courses of Elixa probiotics (about a month’s worth) ordered from their website, not only reversed my antibiotic induced food allergies, it stopped my anaphylactic reactions and random weird rashes. 
 

I’m sure you’re getting a ton of advice right now, much of it terrible, but these are things that helped me. 

[dirty ethel rackham]

5 minutes ago, Katy said:

It’s not stress. Something is triggering a huge release of histamine. It might be allergies, it might be many things. I’d be concerned about Mast cell reactions and histamine intolerance, mostly because I had anaphylactic reactions to many things for years. Does he have a history of other allergies? Does he eat a lot of high histamine foods? Pork, cheese, aged proteins, meats?  Alcohol, wine, vinegar? Is he regularly dehydrated? 
 

When I have too much histamine I find DAO (a supplement of the enzyme your body makes to break down histamine) is super helpful. I’ve bought it many places. It was initially available only from pork sources but now there is a vegan version derived from pea sprouts that’s even more effective. I buy it from Amazon. 

I also found that 4 courses of Elixa probiotics (about a month’s worth) ordered from their website, not only reversed my antibiotic induced food allergies, it stopped my anaphylactic reactions and random weird rashes. 
 

I’m sure you’re getting a ton of advice right now, much of it terrible, but these are things that helped me. 

Since 2 doses of epinephrine did not do anything to alleviate symptoms, they don't believe it is histamine-mediated.  I think it would be easier if it were.  Then we could find a cause and make a plan.  But they believe it is bradykinin-mediated.  We are awaiting test results to see.  

[footballmom]

My DH has alpha-gal, a mammal meat allergy that doctors think is caused by a tick bite.  Before being diagnosed, he didn’t react every time he ate mammal meat but when his reaction came on, it was sudden and it was extreme. Because you react hours after eating, it took a while to figure it out. Just another possibility for your DH. Glad he was able to come home and praying the doctors figure it out quickly!

[dirty ethel rackham]

1 minute ago, footballmom said:

My DH has alpha-gal, a mammal meat allergy that doctors think is caused by a tick bite.  Before being diagnosed, he didn’t react every time he ate mammal meat but when his reaction came on, it was sudden and it was extreme. Because you react hours after eating, it took a while to figure it out. Just another possibility for your DH. Glad he was able to come home and praying the doctors figure it out quickly!

I have heard of this.  I think I heard one of the doctors mention this, but they ruled it out due to not responding to epinephrine.  It looks like alpha-gal falls under the histamine-mediated angioedema.  

[wintermom]

That is so scary. I hope that you and your dh figure out what is the trigger of these episodes so that you can prevent them. You mentioned that the swelling doesn't seem to respond as expected to epinephrine, but what did reduce the swelling eventually? 

I found that when I used epinephrine it caused so many other "side effects" that it was hard to tell if is helped at all with my allergic reations. It's so powerful, but I wonder if there are people who don't respond to it for various reasons, even though it's some kind of body over-reaction. 

[TCB]

Does your husband take aspirin? My dad had similar, but less severe, symptoms recently and they thought it might be caused by aspirin.

[elegantlion]

Thinking of you,,,,hugs,,,

[dirty ethel rackham]

13 hours ago, wintermom said:

That is so scary. I hope that you and your dh figure out what is the trigger of these episodes so that you can prevent them. You mentioned that the swelling doesn't seem to respond as expected to epinephrine, but what did reduce the swelling eventually? 

I found that when I used epinephrine it caused so many other "side effects" that it was hard to tell if is helped at all with my allergic reations. It's so powerful, but I wonder if there are people who don't respond to it for various reasons, even though it's some kind of body over-reaction. 

They did increase the dose of steroids.  But it took about 14 hours before the throat swelling was reduced enough for them to feel comfortable sending him home.  

3 hours ago, TCB said:

Does your husband take aspirin? My dad had similar, but less severe, symptoms recently and they thought it might be caused by aspirin.

Yes, he has taken baby aspirin since his heart attack 5 years ago.  Thanks for the tip.  We will look into this.

[dirty ethel rackham]

On 7/8/2023 at 8:31 AM, MercyA said:

I am so sorry! 

My SIL has an allergy to heat, especially when going from very cold temperatures to very warm temperatures. Once she was out running in the winter and when she came inside her throat started to swell shut. She managed to dial 911 and then passed out. IIRC she had to take antihistamines daily for a long time. I get heat urticaria--hives from heat, and they used to be very severe. Maybe something to consider, although it sounds like it happens in all temperatures for your DH.

Hoping they can pinpoint the problem very soon.

Wow.  That is scary.  My daughter has cold uticaria, but it only seems to be a problem in sub-zero temperatures.  She came back in from walking the dog (who loves cold weather) and could barely get her jeans off because her thighs swelled so much.  And her face had hives.  She learned that she has to wear more layers on her legs in the cold and wear a balaclava.  She didn't have any airway problems.  That was 6 years ago and she hasn't had any issues since.  

On 7/8/2023 at 10:41 AM, kbutton said:

Oh, gosh, that's frustrating and scary! I prayed that this will get sorted and treated quickly. 

You might look for a an allergist/immunologist that is mast-cell disease competent, just because one that can handle those sorts of things is one that will likely be curious enough to help find a solution if it's something relatively novel. 

They are sending us to an allergist that they think specializes in what they think Dh has.  We have 2 names to see if we can get him in this week.

[kbutton]

46 minutes ago, dirty ethel rackham said:

They are sending us to an allergist that they think specializes in what they think Dh has.  We have 2 names to see if we can get him in this week.

I'm glad they had a referral--sometimes for something kind of niche, they're just guessing where to send people. 

[ScoutTN]

Praying for great docs who figure this out soon!!