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Help! 2Nd Bloody Nose In An Hour!


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Yikes! Kayleigh is on her 2nd bloody nose in an hour and it's a bad one!! When she pulls her hand away it's like a faucet running! She has NEVER had bloody noses before, EVER. Is this from meds? Any other POTS/Dysautonomia peeps deal with it? Tips?

Her blood pressure is fine, her heartrate is good. She isn't feeling woozy or anything - says she feels fine and is even kind of laughing a bit out of frustration saying "what ELSE is gonna happen to me!?"!

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Hi Kayber's Mom,

Sorry to hear this ... I'm not up on nose bleeds but I googled it real quick. Medicenet said it wasn't a problem for kids but if I were you based on Kayber's history, I'd either take her to the ER or call her doc. Actually, as a mom, if it were my daughter, I'd take her to the ER anyways. That way a doctor can access the problem ...

I've been sick with CFS / OI for 21 years and from what I've read this isn't a normal symptom.

FWIW ... My DD started having episodes of anaphylaxis at 16 and she acted the same way as Kayber. All this medical nonsense can be just too much for them ... I regularly had to convince my DD to use her meds because at 16, she didn't understand the consequences.

I know it's difficult right now but staying calm will help Kayber handle this ... Easier said than done of course ... tc .. D

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We called the after hours nurse. Believe it or not - she said to use Afrin! Said to use 1 spray of Afrin and pinch for 10 minutes. If it is still bleeding after that to do it again. If it is still bleeding after the 2nd try then head to the ER.

So far it has stopped... we shall see!

My kitchen sink looked like a murder scene!

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My son goes through bouts of bloody noses, running like a faucet. I have mentioned them to every doctor, including his POTS dr, and no one seems to think anything of it. They don't tell me anything to help them, like it is just a curious fact I am giving them and they move on. He hasn't had one for awhile though.

The last one had, we were in the waiting room of his dermatologist and all of a sudden his hand is full of blood. Out of the blue it just started bleeding.

If you find out a cause, let me know. I've gotten no where.

Christy

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I get them, and my mother did too, when she was younger. It's not so much the nosebleed itself as the fact that it WON'T STOP. I assume mine are part of the bleeding tendency that people with EDS often have. It's cuts too, and needle sticks. I had to go back into a doctor's appointment once because a needle stick that seemed to stop bleeding, started again a few minutes later and pretty soon there was blood running down my arm.

I think it's the same mechanism that causes easy bruising, not positive.

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I've wondered about a connection to EDS, myself, although I do not know if I have EDS and don't think I do. Anyway, my daughter gets spontaneous nosebleeds (usually after a cold--or after a blow to the nose). I get them occasionally. My daughter's can be bad and I have taken her to the ER once with one after it would not stop after 20 min. They gave us a nose clip to use when she gets them--and instructed us to leave it on for 20 min. This simple device works really well and nosebleeds have been less traumatic having this on hand. It does seem like a lot of blood and can be scary for that reason.

No doctor has been concerned about our nosebleeds, btw. They just say some people are prone to them.

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So - Doc told us he has another patient on Florinef that he did a procedure on earlier this week and she bled and bled! He said Kayleigh and this other girl are the only 2 of his patients on this med and he suspects the Florinef has something to do with it, but it's not really listed as a side effect. He is having us use nasal saline for now and if she has another one before Wednesday he plans to use silver nitrate Wednesday while we are there to put an end to it.

He also heard several PVCs in her while we were there today... the good news is she isn't feeling them. But he did say they were pretty prominent. He'll recheck when we are there Wednesday.

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Hi KM-

I just wanted to chime in and say that my son, at his worst, had the same problem with bloody noses. They were often impossible to stop and we ended up at the ER several times. He had the silver nitrate treatment to no avail and they ultimately cauterized his while under general anesthesia. He has MANY symptoms similar to your daughter's and was (and is) taking florinef at the time the bleeds occurred. If her BP is NOT high, I don't see how florinef could be implicated. However, I definitely believe that they are related to your daughter's overall condition- how could they NOT be?

We had the most luck with pinching his nose with steady pressure while he held his head perfectly straight ahead- neither back nor forward. We also had several alternative practitioners who taught us to tightly pinch off the top knuckle on either his pinky finger or baby toe (or both) you can do this with a rubber band, but be careful not to entirely cut off circulation- you can tell if the tip turns blue. Several minutes of this almost always stopped the heaviest flow- not sure WHY. This is how expistaxis is teated in the East.

We were told that Mack's blood vessels were very prominent in his nose. Some ideas... Mack is being treated for mast cell activation disorder because he flushes and sweats so badly. When mast cells degranulate, they release massive amounts of heparin which is a potent blood thinner. Mack also struggles with major GI issues. One physician theorized that he might be low in Vitamin K (due to malabsorption), which cause blood to coagulate. Maybe try to get your daughter to regularly eat some spinach to help. Mack has an underlying connective tissue disorder, severe bradycardia, neurally mediated hypotension, small bowel dysmotility, etc. Some part of this MUST be responsible for the bloody noses.

So sorry you're dealing with so much. I've been off the forum much of the summer as my husband had a severe accident earlier this summer. I've had my hands full caring for he and my son :rolleyes: and have had little energy for computer time. I've been checking on the forum occasionally (as my energy allows) and have been distressed to see all you've been through.

Hang in there. Big hugs to both you & your sweet daughter. I know how heartbreaking it is to see your child suffer.

Julie

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My mother gets nosebleeds like that. She's had to go to the ER at least a half dozen times that I can remember. Not fun.

One of the EMTs told us a trick to stop it. Take a piece of flexible cardboard (tear a piece of a cereal box about 1inch x 1.5 inch) and roll it (like a cigarette) and tuck it between your upper lip and your gum, horizontally, right underneath your nose.

I don't know if it works, never tried it, but the paramedic swore by it.

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