Nose bleeds.

[Dolores81]

Hi all, does anyone suffer from nose bleeds? My daughter has them all the time. At least 3-4 times a week. Really bad ones.

[carrie78]

I get daily mild ones, but they are basically just blood leakage when I blow my nose, I get a lot of congestion also though so it could be more related to that. I am still a suspected not a confirmed BD sufferer.

[Dolores81 in reply to carrie78]

Thank you for your reply. My daughter nose bleed can be quite sever at times, and can take up to 10 minutes to get it to stop bleeding.

[sneakyblonde in reply to carrie78]

Hi,

I just skimmed through some posts, this may have been mentioned.

HOW ARE YOU STOPPING THEM?

IT IS SUGGESTED TO: GENTLELY PINCH BOTH NOSTRILS TOGETHER, PLACE ICE ON THE BACK OF THE NECK AND SIT QUIETLY.

DO NOT LET GO OF NOSTRILS, "TO SEE IF THE BLEEDING HAS STOPPED." IT MUST HAVE TIME TO CLOT, WHEN YOU LET GO, THE CLOT THAT WAS FORMING IS DISTURBED, AND HAS TO START THE CLOTTING - AGAIN. KEEPING THE BLEEDING TIME LASTING LONGER.

(IT WAS RECOMMENDED TO TIP HEAD TIPPED WAY BACK, THIS IS NO LONGER SUGGESTED.) IT IS SUGGESTED TO KEEP HEAD UP, RELAXED, LEANED BACK AGAINST THE BACK OF A CHAIR OR SOFA IN A POSITION OF COMFORT.

NOTE: THERE IS A "PROPER WAY" TO BLOW A NOSE: PLACE TISSUE OVER NOSE, USE FINGER PRESSUE OUTSIDE OF NOSTRIL TO BLOCK ONE NOSTRIL. BLOW GENTLY. BLOCK THE OTHER NOSTRIL AND REPEAT. BLOW VERY SOFTLY. LOUD "GOOSE HONKS", MEANS IT IS TOO FORCEFUL! THIS CAN CAUSE NOSE BLEEDS.

IF THIS CONTINUES, ASK THE DOCTOR ABOUT CAUTERIZATION OF THE BLOOD VESSEL THAT BLEEDS. (SOME DOCTORS SUGGEST CORN STARCH ON A COTTON SWAB, INSERTED IN THE NOSTRIL TO AID CLOTTING.) ASK YOUR DOCTOR ABOUT THIS BEFORE TRYING IT.

(PARDON THE CAPS, PLEASE. MY BLURRED, DOUBLE VISION IS WORSE BECAUSE OF EXTREMELY HIGH BLOOD PRESSURE.)

BEST OF LUCK AND HEALTH TO YOU BOTH,

CINDY,

CALIFORNIA, USA

[Dolores81 in reply to sneakyblonde]

Thank you Cindy, I'm pinching the nose whilst she is sitting up straight. I pinch them till bleeding stops.

[sneakyblonde in reply to Dolores81]

Good. I didn't know if you knew to do that or not.

If I think of anything else I will let you know.

All my best,

Cindy

[Dolores81]

Thank you Dan. It looks like it may be link to behçet's or maybe the auto immune system. I really do hope she will grow out of them as they are quite scary not just for me, but for her too.

[Rosemaree]

Yes -- had months of daily nose bleeds. Had multiple nasal ulcerations. The doctors never figured out my diagnosis for 2 years now. It was my amazing husband, a dentist; who researched my continuous tongue ulcers, genital ulcers, rectal ulcers & we asked my Rheumatologist about Behcet's disease (there is no real lab tests that confirm it). I have had 2 sinus surgeries over the past 2 years; the last one was tissue grafting (nose was better for about 7 months & then has started in again with the ulcers, this time only the right nare.) Doctors need to put all our symptoms together & not treat it separately -- that's called a good diagnostician! People turn up their noses at dentists; but I married an amazing one - thank God.

[Dolores81]

Omg I didn't even think about her having ulcers in her nose. And she has always said it feels like she has something up there. Thank you so much Rosemaree, we have an appointment with her rheumatologist on Thursday so I will definitely bring it up. And your absolutely right about dentist. It was my dentist who first realise there was something wrong as I kept going to him for my mouth ulcers. He kept telling me my GP should be doing more to investigate. Although I did diagnosed myself. After researching my symptoms. Even when I ask my GP to referred me, they told me no twice. On the third time I insisted and told them I wasn't leaving till they agree.

[Barry71]

My girlfriend doesn't have BD but used to suffer really bad nosebleeds all the time, but since she cut out gluten (she was diagnosed non celeac gluten intollerant), she no longer gets them. Her gums used to bleed too when brushing, they don't now.

If she accidentally eats small amounts of gluten, her gums will bleed when brushing.

[Dolores81 in reply to Barry71]

Hi Barry71, thank you for sharing. She's had numerous allergies done. I'm pretty sure they check for gluten. I'll ask her specialist tomorrow again. As I do think they need to review this symptom again