Hi

[The_Muttster]

I'm Neil, came across this site from browsing the interweb.

From the age of 3, I started having nosebleeds. Until I was 21, life was a blast as I'm sure you could all testify. The nosebleeds were compounded by having the World's Worst Hay Fever and the number of bleeds throughout the Summer months would be in double figures almost daily. My nose was cauterized on both sides multiple times to no avail (I even had a bleed during one session!). To treat my Hay Fever, I worked my way through all the new anti-histamines, none of which had any effect. I was given Naseptin, which I reacted to - even starting further nosebleeds! My teenage years were still frustrating with the bleeds including having one during an exam!

Eventually, at the age of 18, HHT was diagnosed by a specialist in Edinburgh I was referred to. Ironically, it started to tail off! Throughout my 20's, the Hay Fever lessened to an extent and following several sessions of Chinese medicine, I've been pretty much OK for the last 3 years. I'm 32 in a couple of weeks and my nosebleeds are now quite rare. I still have the blood spots with a nice big juicy red one on my belly and two vertical stripes on either side of the tip of my nose. By and large, the smaller spots on my hands and arms move location every few months so I don't even notice them anymore.

Last February, my Wife and I had a Son so we decided to start looking into HHT again. I was surprised to hear that there are tests they can do now so I've been making myself available to the medical profession to see what they can tell me. So far, the initial results have been promising. I had an MRI on my head earlier in the year which came back without any abnormalities. As it's mainly my face that's noticable, I was quite relieved when I was shown the images. In a week and a half, I'm off to Hammersmith to see what they can find.

And that's about it for me. Thanks for reading,

Neil.

[Matt]

Thank you for sharing your story with us, it is always good to hear of improvements 

[jmfw]

I'm surprised to hear you say that the red spots move locations---my stay where they are and get bigger until I go to the dermatologist to have them lasered away.  Is this unusual?

[bob]

Hello again I feel as if I am pestering you all with this being my third mail to the board.
But after having a good look around all the inputs I thought I should write a more detailed mail about me and my little big problem, well little to the uninitiated anyway of which there are many I have found during my working life.
In my last job some 14 yr ago I could sense the tension when ever I had a bleed, I was, I suppose a big disadvantage to my employer but to be fare to them they never finished me just made me redundant.
Which I suppose is the same thing but different aammmmmmmmm,
Still I pressed on in a training course for a while but work became impossible and had to go sick, no problem with my dr as he knew how bad I was.
Ever since I was about 30yr old I have visited various hospitals been cauterised uncountable times, and been lasered  nothing of that kind of treatment is any good as it never a good fix, and dries out the nasals way to much which as you all know is bad.
I have telangiactasia in all the expected places, pretty bad on my face and head, shaving has been a no no for many yrs,hence a permanent very short beard.
Don’t go far now as I always like to be near a bold hole in time of need, my car is vital as my transport and field medical centre without it and my wife who is a rock I would be in a fine pickle at times.
I live in a small city and for many yr I have people watched to see someone with the same tell tale signs as myself, and to this day, and I am 63 I have seen one.
Crumbs I could write reams about some of my HHT adventures, like the worst bleed I ever have had was 2 days after my first laser I just exploded that was the first time I was ever really scared.
When I am pretty bad now  on my knees with my head in the bath,trying my best not to redecorate the bathroom,and my wife is standing with the phone in her hand I always say the same no ambulance until, and if I faint.
Don’t forget if you do ever have to go to A and E for your expitaxis,try not to let them pack your nose with gauze etc,getting it out later can be a sure-fire way to a rebleed,there are other ways to stem the bleed.
Well sorry to go on, but if you think this is boring then feel free to tell me so.

Take care
Be lucky
All the best
BOB……. 

[Matt]

Don't worry about it Bob - you are not pestering anyone, and are not boring. After all, the whole point of this message board is to get people talking - if anything, I encourage everyone to make as many posts as they wish!

I had also been advised to get quarterised, however like you said, in many cases it doesn't really work - and in any case at my local hospital they would just try to pack it - again, the consequences you mentioned in your post would apply.

[Tracey]

I understand what you guys are saying.  But the one thing for being cauterised, is that it will give short term help and relief.

In my case I have been done so many times since the age of 16, and I am now 36, that the surgeon won't even go near my nose.  I have had both cautery, and cryotheripy (can't spell that one yet)  to my face, lips, tongue and ear, and has all been most helpful.

The cryo, for those that don't know is the opposite of the cautery.  It freezes insead of hot (both still burn though), but the cryo doesn't leave any scars.

I have had the youngs procedure performed on just one side of my nose, nearly two years ago, and the surgeon is currently talking about sealing up the other side too.

Tracey

[catoberk]

Tracey:
What chinese medicine did you have that helped with the nosebleeds?
Thanks,
Marlene

[Tracey]

Hi Marlene,

No Chinese medicine at all.  Sorry.

Tracey

[philbarto]

Great news about your claim Trace its always nice to put one over those government departments they are always so unhelpful and are usually quick at telling what you cant have anyway youve now set a presedence with your claim and it may undo the doors for more HHT sufferers to claim

regards Phil

[Tracey]

Thanks Phil, that is exactly what I was hoping for.

Tracey