Come on Folks.

[catoberk]

I am sorry for all who have HHT with the severe nosebleeds.  I lost both my mother and maternal grandmother to them.  I have them and don't own one bit of clothing that has not been bleed upon.  I live in the USA and have undergone septal dermaplasty, laser, iron infusions, amicar, and tried almost everything under the sun to make the nosebleeds slow down.  I don't want to join the 1000+blood transfusions that my family endured.  I have found that I am help some by taking ester c (500mgs), cool cayenne tablets (1000 mgs) and bioflavonoids (500 mgs).  I take them when I start to bleed and it can reduce the bleeding time by quite a bit.  I live in North Carolina and will be going for more tests and to see if I have to have transfusions next week.  Doctors don't seem to understand the amount of blood that you can lose from your nose. 
I wish all of you well and hope you don't suffer as much as I do.  It is hard to understand that in the last 50 years nosebleeds are still so untreatable with this disease. 
Thanks for giving me a chance to vent!
Marlene

[Annie]

Hi Marlene,

I'm glad you found HHT forums. Even though I'm not sure yet if I really have HHt. I have been having profuse nosebleeds the last month or so. It is so comforting to have a support system here with people who definitely know how it is to bleed from the nose & mouth.

I wish you well when you go to see if you will need a transfusion. I truly hope you won't but if it  helps you it is best. Please let us know how it goes? I will be finding out what is causing my nosebleeds.

Annie

[philbarto]

Hi Annie
          Thats the way to do it let us know how you get on communication is what makes the site
regards Phil

[catoberk]

Thanks Annie for the warm greeting.  It appears we are all in this together.  I hope all of your tests turn out ok.  Many conditions related to or caused by HHT can be helped.  I unfortunately haven't found help for my problems.  I look forward to being able one day to see a cure for the nosebleed issue.  I like this post forum as you can actually feel like you can relate and not be censored.  I belong to the HHT.org and the members forum has been down for months.  People don't seem to want to have discussions about HHT like you do on this one.  Perhaps, somewhere in the world if we all work together our children will not have to suffer as we do.
Thanks again for being so friendly and good luck to you!

[Matt]

It's great to have you here Annie, and I too know all too well what you are talking about.

[Annie]

It's great to have you here Annie, and I too know all too well what you are talking about.

Thank You, Matt,
I like the understanding here & being able to share with everyone. I will be finding out if I do have HHT. I'm having profuse nosebleeds that happen out of nowhere. It is wonderful to be able to come here.

Annie

[Annie]

Hi Catoberk,

Thank You, for the nice words. I'm glad to have been able to meet you here. Like you said, "we are all in this together".

Best wishes, Annie

[Emmaxxc]

I thankfully dont get nosebleeds like a lot of you, but a couple of times Ive thrown up blood, I was watching bad girls and dozed of, and suddenly woke up feeling sick, I ran up the stairs and as I got to the top I almost fainted, but I got to the bathroom and sat on the toilet seat and stuck my head between my legs, which stopped me feeling faint then BAM I just threw up loads of blood into the bathroom bin, it was embarassing when the paramedics came though...they did'nt think it was blood at all, because it didnt smell irony due to my aneamia and they tried to say it was ribena lol... but they checked my B/P and they couldnt get a reading, I ended up in hospital having 2 units of blood!! luckily this has only happened to me twice, I dread the day it might happen in public

[aimee]

Have you had an endoscopy to look for the bleeding blood vessel in your stomach?  I would insist on it.

Aimee

[kathy]

....the paramedics in your country sound like total **** heads not knowing that it was blood!!!!!!!!!!!!!

[philbarto]

Hi Annie ,
           lets know how you get on at your GP it is the first step then he may send you for sceening and  if you find you definately have HHT then relevant treatments can be decided on some work for people but not for others . If the nosebleeds get serious ie need for blood transfusions etc then it is time to consider nasal closure or Youngs Procedure . Prof Valerie Lund at the London ENT wrote a piece on the procedure and has stated that to her knowledge all patients having the procedure have iradicated nosebleeds completely. and so have I

best regards   Phil

[Emmaxxc]

Have you had an endoscopy to look for the bleeding blood vessel in your stomach?  I would insist on it.

Aimee

I had a endoscopy under general the same time I had a bone marrow biopsy 9testing for leaukeamia), along with HHT I also have pancytopenia (low white cells, low red cells, low platelets) thats why they first thought I had leakuamia, but thankfully I didnt. dont know if anyone else suffers from pancytopenia with HHT??

I also have a MRI scan in two weeks...