Some of the questions I want to ask are: do you all get nosebleeds on a fairly regular basis? Are they spontaneous or caused by blowing your nose? Do you all use Stimate (nasal spray)? and if so, do you carry it with you all the time? What about flying - is it dangerous, will it cause nosebleeds (due to dryness and although I know the cabins are pressurized, there might still be an issue)?
To those of your who have responded to some of my earlier questions, I thank you and I appreciate your ongoing support. Saying prayers for you all!
I never had a nosebleed until I was 50 years old. However, my Dad had them beginning when he was a small boy. Yes, a variety of things can irritate the lining of the nasal passages…for me, it can be my allergy spray I use for things like hay and grass allergies.
I’ve also experienced nosebleeds when I’ve visited a place with high altitude. For example, there was a National Hemophilia Foundation Annual Meeting in Denver several years ago, and there were many VWD folks with nosebleeds – some very minor, some major.
When I had my nose cauterized, the ENT said to never use any nasal spray except Afrin. He said it is not only effective for your problem, but also will help slow down any bleeding. He said if you read the pamphlet with other nasal sprays, you will see they mention bleeding as a potential problem. I was also told to run a humidifer next to my bed at night and to apply saline nasal gel in my nostrils to keep them from drying out.
Bleeder Girl said:
I never had a nosebleed until I was 50 years old. However, my Dad had them beginning when he was a small boy. Yes, a variety of things can irritate the lining of the nasal passages...for me, it can be my allergy spray I use for things like hay and grass allergies.
I've also experienced nosebleeds when I've visited a place with high altitude. For example, there was a National Hemophilia Foundation Annual Meeting in Denver several years ago, and there were many VWD folks with nosebleeds -- some very minor, some major.
I got countless nosebleeds before I was diagnosed with VWD and they would usually last 10-20 minutes but reoccur within the day. Now, for what ever reason, I don’t get them very often but when I do, they last about 40 minutes( unless I have Stimate with me). I keep Stimate and home and Stimate at school but other than that I only take it with me on vacations.
Thank you both for your responses. Even though we're all Type 1, it seems our symptoms vary. I guess in my naivete, I was looking for some clear-cut similarities in my attempt to know what to expect next. Again, I appreciate your replies, and if you wouldn't mind, I'd like to connect as a "friend" on this site in order to ask some specific questions.
Flying can cause minor nosebleeding, but if a person uses a saline nasal spray prior to boarding there’s usually no problem.
If you have more questions, feel free to e-mail me at: ■■■■■■■■■■■■■■■■.
Bleeder Girl
My daughter is a 4 year old type 3. Starting at about age 2 she started having minor nose and mouth bleeds and at about age 3 they started to be more frequent. Most are minor but every few months she has nose bleeds that last several days. Since she is type 3 she doesn’t use stimate, but instead uses amicar. Often after several doses it helps, but on major ones we end up having tio get infusions.
again, continued thanks to you all-
Hi Gillian Girl!
When I was younger, I had horrendous nosebleeds. I am now 27, and at about teenage years, my nosebleeds reduced drastically. Never really understood why (maybe less nose picking?! haha) but I am a type 3 and have blood in my nose on a daily basis, but an actual "nosebleed" I've only had one I'd say in the past 15 years and that was due to my HUGE dog (a teacup yorkie-poo lol.) head butting me right in the face! But younger years, I'd wake up in the middle of the night with gushers out of no where! I have to take Humate-P as Stimate does not help type 3's. I take my factor with me when I go away from home, say on vacation or over night somewhere as I can self-infuse as of a couple years ago! (GO ME!) When I have to go on plane trips, I make sure to have my travel letter (written by my Hematologist and nurse coordinator) with me on hand for any questions. I've actually been patted down head to toe over my ice packs being melted (factor on ice) and it was a liquid now instead of a solid and was not allowed on planes!
Hope my stories help and if you have any questions, please don't hesitate to ask me! I love helping others <3
Don't know if I thanked you previously but thank you. Sorry, I haven't been on for awhile. My ENT doctor told me specifically that some nasal sprays will cause bleeding (Flonase being one of them). There are only two that don't. One of them is Afrin. Since I don't have Stimate, I keep it (Afrin) with me for safekeeping. Because I don't get the nosebleeds often, I don't have Stimate. I can't figure out WHY, all of a sudden, I started having them back in September-October, and now they've stopped. I thank God for that. I know that alot of you just take them with a grain of salt, but due to my traumatic events in the past, I cannot deal psychologically with even the thought of having another nosebleed. I would be ok if I cut my arm or leg and saw profuse bleeding, but NOT MY NOSE!
Bleeder Girl said:
I never had a nosebleed until I was 50 years old. However, my Dad had them beginning when he was a small boy. Yes, a variety of things can irritate the lining of the nasal passages...for me, it can be my allergy spray I use for things like hay and grass allergies.
I've also experienced nosebleeds when I've visited a place with high altitude. For example, there was a National Hemophilia Foundation Annual Meeting in Denver several years ago, and there were many VWD folks with nosebleeds -- some very minor, some major.