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Do You Ever Have Diffiuclty Breathing During An Episode?


jjb
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Hi all. Ava is having some of her autonomic symptoms today (which may be migraine or autonomic sz).

Today she has said she feels sick and is breathing as if she is trying to catch her breath and then lays down to sleep. She is fully aware ... no loss of alertness.

Anyone else experience this?

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Yesss. I definitely gasp for air when I'm having an episode.. like there is a piano on my chest or I'm climbing Mt. Everest with no oxygen in the air.

Does she have Asthma or any respiratory problems?

Labored breathing/shortness of breath/ chest pressure-tightness are all symptoms of POTS and anxiety.

I'd ask the doctor for peace of mind, but she is NOT alone. I have this symptom daily!!

What I do is try to listen to some calm music, and drink some sort of warm fluid. The music is to help calm me, the warm fluids (tea usually) helps relax the muscles in your chest and stomach.

Hope this helps,

Maisie

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Thanks for your replies.

The breathing was similar to someone who is experiencing sudden anxiety, but she did not seem anxious.

I have had this too during episodes ... but as you mentioned it is more so for me when I walk up stairs and so forth.

Unless my BP is falling, then I also feel the breathing thing but for me that is an ortho issue.

Ava will suddenly feel nauseous and dizzy ... and just today started having the breathing thing. Actually she just had another episode as I was typing this. She was pretty tachy setting her alarm off .... but not ortho tachy.

Her o2 was actually at 100% when she was doing the breathing thing ... but she desatted once she seemed to feel better.

:lol:

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Thanks for continuing to bring this up Julie. We do have eventually look into it. It is difficult sometimes to keep things staright in my mind when we have been looking into so mnay possiblities and DXs are stacking. I am 100% certain it is all related .... just forever trying to figure out how.

We recently saw a mito specialist who believes it is quite possible we have mito dysfunction here. Julie, since you have so many health issues as I do (and Ava) I am curious as to if you have ever looked into mito?

And here are so more questions re: MCAD (sorry if I have asked them before)

1. Ava (and myself) are prone to quirky rashes, but typically during Ava's episodes/spells there is no rash ... does this happen w/ MCAD?

2. Is your intersticial cystitis caused by MCAD? (I know when I had a bladder biopsy, beside showing chroninc scarring there was also an elevation of mast cells.

3. Does MCAD ever cycle & cluster? Ava's episodes occur in clusters every 3 to 4 weeks.

Thanks,

Jen

I know I've brought uo this possibility before...but I hope she's had mastocytosis/MCAD ruled out. Her symptoms are suggestive of this.

Juiie

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Yes, this happens to me too. It also occurs sometimes when I reach upward for something.

With Ava though ... I cannot figure out an exact trigger such as standing or reaching up above head but she sort of looks or behaves similarly to when I am feeling pre syncope. Another thing she will commonly do is get down on the floor face down in a ball. I used to this too when I had frequent pre-syncope.

My breathing becomes very shallow when I'm having a near-syncope or syncope episode. My husband raises my legs and reminds me to breathe. It's really scary for my family. I'm short of breath on a daily basis.
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Thanks for continuing to bring this up Julie. We do have eventually look into it. It is difficult sometimes to keep things staright in my mind when we have been looking into so mnay possiblities and DXs are stacking. I am 100% certain it is all related .... just forever trying to figure out how.

We recently saw a mito specialist who believes it is quite possible we have mito dysfunction here. Julie, since you have so many health issues as I do (and Ava) I am curious as to if you have ever looked into mito?

And here are so more questions re: MCAD (sorry if I have asked them before)

1. Ava (and myself) are prone to quirky rashes, but typically during Ava's episodes/spells there is no rash ... does this happen w/ MCAD?

2. Is your intersticial cystitis caused by MCAD? (I know when I had a bladder biopsy, beside showing chroninc scarring there was also an elevation of mast cells.

3. Does MCAD ever cycle & cluster? Ava's episodes occur in clusters every 3 to 4 weeks.

Thanks,

Jen

Hi Jen,

We haven't really considered a mito dysfunction for either my son nor I. None of our doctors have suggested it. I briefly considered it when my son was very sick (age 12), but because he had no developmental delays, his doctors never pursued it. The info re. developmental delays and mito may not even be applicable- just something I read on the internet.

Your questions:

1. Yes, I also have hives, weird rashes, flushing, etc...but NOT necessarily during an episode. I belong to a listserve with mastocytosis and MCAD patients. This seems to be true of all of us.

2. Definately, my MCAD and interstitial cystitis are connected! Yes, IC is basically too many mast cells in the bladder or mast cells that are over-reactive.

3. MCAD episodes (anaphylaxis) definitely clusters. I went for a period of time that I had an episode daily. It's been a while now. I can recognize the signs and head it off with extra zyrtec or atarax.

It's really hard to identify MCAD in children. Mastocytosis is easier. Has Ava had her serum tryptase level checked? It's a simple blood test and very revealing. If that's elevated, mastocytosis is a real possibility & would explain all of her symptoms. You would have a definite treatment plan and would be able to keep Ava much more stable.

If her serum tryptase is NOT elevated, it still could be MCAD. Does Ava take any antihistamines? Have you ever noticed a strange rash on her called urticaria pigmentosa? Google images to see & learn more. This is indicative of mastocytosis in children and is fairly common.

Keep us posted on what you find out. It's so sad to see your little girl suffer.

Hugs-

Julie

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