Breathing Problems

[anna]

Hello All,

I and family are quite new to all this ANS disfunction stuff (well had it all our lives but did not know what it was!!) and I wander if you kind folks might be able to help with a problem our daughter has been getting, more laterly; she finds that she has bouts were her body seems to forget to breath! She can be fine one minute then suddenly she has to remined herself how to breath!! Is this an ANS thing or maybe something else, I have had bouts of this myself but not as many as our daughter. Paed. just thinks we are mad! so not much help.

You views would be much appriciated,

Thanks Anna

[lthomas521]

Sounds like an ANS thing. What else does your daughter have?

The ANS-related breathing problems that I have heard about occur when the person is sleeping, but the person is fine when he or she is awake. Does she have any trouble sleeping?

[anna]

HI Ithomas521

The breathing thing happens mostly while awake; while going off to sleep she sometimes wakes up suddenly with thump in her chest then she gets tachy for a while and is breathless but she does not have to 'think' about her beathing.

Myself our daughter and twin boys all have Ehlers-Danlos type 3 and various levels of ANS dysfunction sometimes it is difficult to know what is being caused by the EDS and what is being caused by the ANS issues.

Thanks for your reply,

Anna

[Jacquie802]

Hi,

As far as I know, I don't have EDS. I get the same exact symptoms that you mentioned, which are bad when I sleep...I'm guessing its due to our whacky ANS....

[calypso]

I have this "forget to breathe" problem at all times since the day I developed POTS. I assume it's ANS related, since I have had every breathing test under the sun and nothing else explains it. I have found nothing that improves it or even temporarily takes it away. I manage the problem with yoga and relaxation. I sympathize.

Amy

[Dizzy Dame]

I get this all the time, but my doctors think I might have MG, so I'm not sure what's causing what. You should definitely get her checked out though. Her breathing problems may be caused by something other than the ANS dysfunction.

[Lulu]

an almost exact ditto of what calypso posted. i've always had this forgetting to breathe thing since i've had dysautonomia (looooong before the actual dx) i think it's probably related, weird and complicated, like seemingly most things are about ANS function.

what helps me: relaxation and re-begninng yoga AND i have a special watch that (when i remember to wear) vibrates (instead of beeping) on the hour. those are the times i get something to drink and do some breathing exercises. doing this regularly during my waking hours helps me to be more aware of breathing and fluid intake and it really helps me to feel better! although you'd think i could remember to breathe and to quench my thirst w/o technological intervention

i do know that decreased respirations can contribute to anxiety and make s/s of ANS dysfunction worse, so it can be like a vicious cycle. i hope you are able to find some relief. peace, lulu

[jdqm]

Hello All,

I and family are quite new to all this ANS disfunction stuff (well had it all our lives but did not know what it was!!) and I wander if you kind folks might be able to help with a problem our daughter has been getting, more laterly; she finds that she has bouts were her body seems to forget to breath! She can be fine one minute then suddenly she has to remined herself how to breath!! Is this an ANS thing or maybe something else, I have had bouts of this myself but not as many as our daughter. Paed. just thinks we are mad! so not much help.

You views would be much appriciated,

Thanks Anna

You sound like you are a great mom. Try getting your pediatrician to let your daughter see a neurologist, it might be something there. ANS problems are cardio and neuro as well, so perhaps a neurologist will at least have the reason why this happens or even a way to stop it from happening.

I have had this problem all my life. Just last year my mom was in the room with me while I was having my son evaluated for just seizures and the same "not breathing" and she says( I quote) " Joy used to do this as a kid she was so bratty nobody wanted to baby-sit her because she did this and she would pass out."

the neuro looked at her and said" this was part of her (my) disorder, she was not being bratty" wow. My mom had the wind taken out of her. She has been telling people all my life I am a spoiled brat, and that I faint for attention.

I am so happy you do not have this same theology as my mom. He told my mom (who by the way is a nurse) in all the medical terms why this happened to me, and now she has stopped telling everyone derogatory stories about me. She even apologized to me for it. I think when he told her that is when she realized I was not a hypochondriac and my fainting was a real disorder. Thanks to her is why I saw the dry s in Boston, she pulled her rank at work and got me into BMC so quickly and now I have been getting better for a month. I hope this helps you, sorry it was so long.

Joy

Mom to 4 kids

Teach your children well, they will decide your future!

[Lulu]

wow! joy-what a story! glad you'r mom finally came around!! how sad that it took so long! and just as you've said, i wanted to say to anna that you are a great mom. i meant to put it in my post, then bloop! it was up there and i forgot. (lack of sleep is making me crazy right now)

my own family has finally come around to understanding this is a serious illness and that i wasn't faking being sick. your daughter is fortunate to have so caring and understanding a mother!

good luck to your whole family!