I have had hht for more years than I care to remember; now in my 65th year I think that I have passed the endurance test to be able to say what I consider to be the honest truth about our complaint.
My first flirtation with the dreaded nose bleed was when I was eight, it soon passed and did not made a reappearance until my late twenties when the first spotting became apparent on my face ears and in my mouth, at that time the heavy bleeds were stoppable after 10 Min's or so, and because of the type of work that I was doing at that time my appearance did not matter as I would clean myself at the nearest fire hydrant, much to the amusement of fellow workmen.
At that time I began to look for anyone else who had the spotting  that was on my face, to this day I have only seen one other with genuine telangiactasia on the face, a lady, who for fear of embaracing her I did not approach, although I would have loved to have had a conversation with her.
MYTH............
Now the doctors tell us there is possibly 1 person in 5000 with HHT, take a good look at all the folk you see and know with the exception of family, bet you don’t know a sole.
First went to see a DR for my HHT about 1975,I knew by the way that was what it was as my Dad his dad and uncles had the problem too, yet the amazing thing was it did not seem to register with the then Dr,who did nothing suggested even less so just got on with it.
MYTH............
Was told most with HHT were very unlikely to ever have a heart attack because we are replacing our blood on a regular basis.

Bleeding became a big big problem two jobs later in my forties, you just know that it is not suiting the boss by the funny looks and glances of disdain at your plight, time to take off to the Dr's big time, all the cauterisation in the world will not stop it, nor laser, laser to me is the big MYTH........ The big fix that is just a very short fix not all that good at all.

When I read about folk with HHT going here there even doing strenuous sports I think to myself, they have not got what I have some days I cannot even clean my teeth without starting myself off,hollidays are a thing from another life 16 yr ago was the last time I spent a night out of my own house.
And with just cause believe me.
MYTH………………
A cure,,,,,,,,,,,there is no fix for this most simple part of HHT you can graft, burn ,laser, close off, you can try what you like but In my experience you will in the long term only make it worse, and possibly damage the nasals while trying to make it better.
FACT…………………
You and you alone can make it more bearable and manageable by getting into a routine that suits your nose, it may be a drag and a nuisance that takes time, but patience and tender care can be the difference between doing reasonable life things and being stuck in the house for a day and a half while nature tries its sealing magic.
Oh yes, and if you ever have to go to hospital because you cannot get it to stop, try to tell them not to pack the nose but balloon it as getting the pack out without starting to bleed again is a big problem.
 I have had a routine for years and it helps a lot but I can still misjudge the way it feels as on many occasions start it off much to my annoyance, my wife is brilliant and tells me off if she thinks I am pushing my luck, she has the patience of jobe and I love her dearly a good partner can help you lots as we all get down at times with this monkey on our backs. 
I do hope I am not offending or upsetting anyone in any way but I must admit at times I find it hard not to write in to certain mails as they seem so depressive while still having a full life.
I try my best to stay well away from the consultant now, but we have an understanding that I can call him for a quick visit while having a very bad spell, but to be honest it is just to touch base as I sometimes feel that I need to talk to someone who does know more than a bit about it, and they may come up with something new,,,,, well I wont hold my breath on that one.
The trouble with specialists is they only see the problem without a cure, if they are honest.
 when all most of us really need is a regime to help to prevent the preventable ones from starting, and to manage better when we cannot.
So reckon you will have guessed by now that I am having a  mid hht crisis but I will get over it as usual, looks like another alcohol free new year,……..well just a little bit perhaps……….what harm can a couple of pints do, and I will make sure it is full of iron (fere sulphate )to us HHT’ers.
All the best to all the silent minority out there, hope 2009 is better for us all everywhere.
BOB……….

For me, it's only been about 3 years since I was actually first diagnosed with HHT, but after I'd thought about it, it made more sense to me.

I'm only 22 now, but anything I did at school I always seemed to run out of breath pretty quickly - which back then I just assumed must've meant I was unfit or something, but now of course I realise otherwise.

In terms of nosebleeds, I don't really remember a time when I didn't get them - I remember going to the Ear, Nose, and Throat department of the hospital every now and again about it, but to my recollection, nothing ever came of it.

As I said above, I always did run out of breath pretty quickly, but for some reason it wasn't until about October of 2006 that it more noticeably affected my energy levels (obviously as a result of the low oxygen levels) - which was of course very annoying considering I'd started at a college in the September, which due to the energy level drop, I ended up having to leave - I just didn't have the energy to be able to continue it like I wanted to. Apart from the energy level drop, there was also one occasion where in the span of 8 hours I had something like at least 10 nosebleeds lasting half an hour each (I can't remember for sure, but they definitely went on for pretty long and there seemed to be quite a number of them) which obviously severely hindered my work, and I ended up going away early - I was then told that I looked pretty ill, which is unsurprising since I didn't feel too good either (and shook a bit, presumably from the blood loss).

Since then I thankfully haven't had a repeat of the nosebleed on such a big scale, but obviously it's still been a daily occurance like I'm sure we all come to expect (there might be a day that there's not a single one, but obviously that's rare). Unfortunately the energy levels have stayed the same, so that's still left me stuck in the house most of the time.

I wouldn't be surprised either, if the HHT is the cause of my poor eyesight too, due to the low oxygen levels.

In terms of spotting, as far as I am aware, that is a part that I have never had.

As far as knowing people with HHT, I obviously knew none and is obviously one of the reasons I decided to start this site - since I figured if it's as rare as I was being told, then people who have it/know someone with it would still want to be able to talk with others who have it/know about it too. Tto be honest I've still no idea which of my parents it is that I got the HHT from though, since they've still not had the chance to get tested to find out yet, due to time constraints.

I do agree about the routine that suits your nose, and can also admit to misjudging it plenty of times too - most of the time I'd feel the tell-tale signs of nosebleed starting, but there are obviously the occasions where it just comes BAM! out of nowhere.

Here's an odd fact for you - my latest hospital stay in which I had the operation done didn't have a single nosebleed, definitely odd considering that the hospital stay was 3 or 4 days (I already forget how long exactly), but a single hour after I'd left the hospital, I had a nosebleed!

Something in the air I guess...

- Matt.

I should've been a bit more clear about what the operation was for since you seem to be referring to a nose laser, whereas for me it wasn't to laser the nose, but rather the latest removal of telangiectasia's from the blood vessels somewhere in the lung areas (at least I think that's about the area it is, I can never remember exactly where it's supposed to be to be honest) which I was obviously awake for.

As to the person saying it's just a nosebleed without knowing what it involves - I know what you mean - especially when they try suggesting tipping your head back and waiting for it to stop 

I can't remember if I've had the full body scan to be honest - I think I have but I can't be entirely sure. In terms as to what I do about bleeding when in hospital, if you mean the nosebleeds, when they did happen (like I said, my latest stay in hospital it didn't) I'd just do the usual of just waiting for it to stop bleeding into the tissue. If however you meant other bleeds, then apart from the less-frequent gum bleeds (which I have no idea if it's due to the HHT or not), as far as I'm aware I don't have any other bleed problems.

Though I did have an endoscopy and the top end too both back in August (so about a month or two after the operation mentioned above) where they found one telangiectasia somewhere and zapped it (I forget where it was located though, but I think they said it was the only one they encountered in it) - an experience that was as expected, very uncomfortable.

Regards spotting matt I do have telan quite bad on the face, ears, mouth, fingers and toes are well covered, though I don’t seem to be getting many new ones now as I am getting older.

For the past 2-3 years I've been getting treatment for facial telangiectasia and those on my fingertips at the dermatological laser clinic at the Royal Free Hospital in North London. They use the same Yag laser that is used for people with wine-red birthmarks. It selectively zaps red-coloured tissue and a couple of treatments deals effectively with each lesion.

I 've been going there every 3 months and it's been so effective that they've just reduced my appointments to once every 6 months. Basically, I no longer have any spots on my face at all and the painful and inconvenient spots on my fingertips have receded as well.

I recomnend that anyone who would like to rid themselves of facial and hand telangiectasia should enquire with their GP whether there is a suitable local laser clinic for people with birthmarks. It works.

P.S. It does hurt, but it goes away in a few days, as do the purple burn scars. I shave before I go and then stop shaving for 4-5 days. It was a big, angry telangiectasis that kept bleeding when  I shaved that got me referred to the laser clinic in the first place.

I'm enjoying reading these posts as I am experiencing many of the things that everyone else is/has experienced.

I'm based in Australia and have been very frustrated with a HEAP of things - mistreatment, misdiagnosis & ignorance.

I'm 42 now but have been suffering increasing nose bleeds since my late 20's.

I think my biggest grumble was convincing someone that all this excessive bleeding was not normal...

I got frustrated one night & found a picture on a web site - I think it was the hht.org site of a lady's face - and I swore it was my grandmothers face! Just to see the purple blotches and the bleeding tongue was a real eye opener for me!

Trying to explain to the ENT and "self diagnose" was amazing - I was told that I couldn't have HHT as it's very rare and anyway it needed a family history to even be remotely considered!  I was flabagasted as I had been through numerous times with the ENT my family history - my mother; my grandmother & great grandfather all had the "funny red spots" (as a kid we'd call them purple volcanoes!) and severe bleeding....

I think the worst time was spent in Emergency at a local hospital. (actually a number of times). I live quite close to a large teaching hospital and they couldn't understand why I was bleeding. Everything they did to me made me worse. In the end I started to clot & solidify so that I had the biggest clot that I'd ever seen - internal from my nasal/sinus cavity to outside my nose (just like a big lump of jelly). Once it had finally stopped bleeding an intern came along & said I looked in a bad way & needed to clean me up & jiggled the clot with a cloth & released it & ended bleeding for another 1.5 hours!

In the end they said there was nothing they could do - they needed a surgeon to intervene etc etc etc. Other time's (before diagnosis) they wanted to inject me with drugs as if I was a hemophiliac and yet other times they wanted to inject me with heparin to thin my blood more...

Anyway I've had a lot of mistakes done to me. I'm going to an ENT in Sydney now who specialises in HHT patients. He said I'm his 11th.  In my local town of Penrith (in western sydney) I've been to 2 ENT surgeons. There's one other patient in Penrith that I am aware of with that ENT. Interestingly a bumped into a friend of a friend who's friend (if that makes sense) who'd been diagnosed with HHT. So I guess in round number's there's 20 or so people that (in number) I'm aware of with HHT. Not quite the 1:5,000 statistic that keeps on being posted around. If it was that common in my town there would be at least 40 people - and across Sydney (4.28Mil pop) there should be over 800 patients!

I just dont see it.

Anyway, I started a "blog" last year - mainly to help myself "vent" - and to provide information to others on my experiences as I went along. I dont do diaries - but I guess this is the next best thing. See http://raymondbrooks.blogspot.com/ . I like this forum as everyone seems very real and is going through the same things as me!!! 

Hi All,

I can relate to a number of things in your last post, Bob!

I'm starting to wonder if the real HHT spread rate is out by 10x - like 1:100,000 (not 1:10,000) or higher. I don't understand where the "official" hht.org site gets their number from - unless it is a more diagnosed problem in the states than here in Australia or the UK...

The first time I went to a ENT specialist for checkup after my first big bleeds was similar to you - he poked & prodded in the nose & caused a huge bleed in the surgery - and he went in with the device (I call it the soldering iron...) without any anaesthetic/pain relief whilst I was very much awake. Boy did it hurt! I didn't go back to him until last year when I had a series of major episodes & he was the only one available on an emergency. Was much better & HHT aware by that stage!

I apparently have spots on the same location on either side of my nose - so when they cauterise it they need to be very careful not to perforate it! I'm grateful that I've never had that happen yet!

I wonder what the inside of my nose looks like. I can just imagine what you are saying with it looking like craters on the moon! I dont think I am anyway near that bad!

I really object to the big $$$'s specialists charge. I cant understand the difference in fees. Sometimes I get away with a $50 fee - othertimes its $175. We do get money back from Medicare but can't work out how they charge! I always assumed it was something to do with when they got their tax bill!

Up until now I've only had electrocautery done. I almost had a C02 laser procedure done as "an experiment" but they decided to go back to the normal method once I was in theatre.

Last september I went to a different ENT & hospital and they did a argon laser treatment on the nose. I was quite impressed as the blood loss & after effects were minimal compared with the other surgeon/surgery. I go in tomorrow back to the same hospital for another argon laser zap. (So it's been about 3months before the bleeds became unbearable and another 2 months of severe bleeding waiting for surgery!)

I ended up in the emergency department at the local hospital on the weekend suffering side effects from the bleeding - severe lethargy, aches & stuff. As soon as they realised I was not a hemophiliac, I got pushed to the side, waited 10 hours & then discharged without treatment as I didn't bleed while I was there... (Actualy I did - but they were too busy to attend to me so I fixed it myself!). I went back to my GP & am struggling to keep my iron levels at the minimum level at the moment...

I have been on tranexamic acid (Cyklapron or whatever it's called!) for about 18 months and I've noticed a huge improvement in the clotting of the bleeds - so I do clot quickly now. It doesn't do anything about the volume of the bleeds but they do clot & stop (eventually) whereas before they would go forever.

What doseage are you on? I think mine are 500mg. I take 1 a day (2 when bad) but I get very sick in the tummy when I take them. I've tried a few things but nexium seems to settle everything down. Still occassionally get waves of nausea when I take them.

Can you remember what your bleeds were like before taking the cyklapron?  I cant imagine taking 10 of them!!! They are quite a largish tablet! 

How much do you pay for them? I note from the script that the full cost is $A51.25, but I pay the subsidised cost of $A31.30. Last year I had so many med's that come December all my scripts were basically free!

I know what you mean about the nose creams & things. The nose is very sensitive! Some creams work, others cause a bleed. I am keen to try anything... if it helps.

... Raymond!

Hi David,

yes - the tablets I take are 500mg. 1 daily, increased to 2 when I'm bad. I've found that very effective as compared with my pre-tablet condition!  I did an experiment & stopped it for 2 weeks - and ended up in hospital with bleeding that I couldn't control. So I won't do that again!

As far as I can tell it helps promote clotting. I think it is like an amino acid or something who's affect is to assist in the clotting process - not internally, but clotting as the blood comes out (which is what we want!).

I dont know too much about it's chemisty, maybe see http://en.wikipedia.org/wiki/Tranexamic_acid if that helps...
The main risk is DVT.

The article refers to the use you mentioned about extractions and dentistry!

Electrocautery has been ok for me up until recently - but I agree is now useless.

The surgery I'm having tomorrow is argon plasma/laser - which is supposed to be better, but I've heard there is a fibre-optic diode laser now available in Sydney that I need to investigate...


It's interesting about ENT methods. I dont think many of them know about HHT - as it's so rare so they just do normal things. That's ok for 95% of people, but more care needs to be taken on us!

What type of laser were you referring to? There are many types, so I've found out, each with a different effectiveness!!!

6 weeks sounds great to me! I'm lucky if I can get a 2 week break from the bleeding....

HI ALL,    Regard the transemic acid (cyklocapron 500s )as I have said in a previous mail I take four a day then up them as a bad bleed develops taking two immediately when I know the bleed is a bad one for stopping reasonably quickly, if it does not slow I will take more,But ten is my max but only when the panic is setting in after prolonged bleeding dont like fainting and waking up in the a+e and they do work,as you said Raymond they do not slow the rate,but do assist clotting faster than if left to  mother nature,the blood clots like cement.
 My general practitioner is OK with the numbers as he insists they are a safe tablet,but I do have feelings of nausea on many occasions for which ....oh dear I pop another pill.
I am very fortunate to have my tablets provided for me by the NHS,for which I am humbled and eternally grateful,as many yr ago I was told they were as much as £50? a box.
When I worked in the early 90s I tried the Tran acids for a while,but stopped when I felt tired most of the time,I think it may not have been the tabs but as I did not really feel happy about taking them I stopped.
But that is another storey and am happy with them now as you can tell by the duration I have been taking them.
As we have all said we do what is best for us,but I do not think taking two tabs as you do Raymond would have any beneficial effect on myself and the pamphlet in the box OK's a high dosage,and have never seen any recommendation for duration limits on treatment time.
Some years ago the consultant I was seeing suggested that If I was willing to try a female hormone treatment,he said that something in the ostra something or other was a good bleeding point cover as it had the qualities to heal over weak tissue.
Unfortunately it would most probably have side effects,so as tempting as it was to give it a try,I declined,I always had the feeling  that it surprised him.
I smile to myself on occations as once upon a time I would not even take a head ache tab,shake me and I swear I may rattle now with this and that.

Be lucky
BOB............