Come on Folks.

[bob]

Hello all, just thought I would bore you with my last few days of my life, a life for which I am very grateful, despite my trials and tribulations.

The best way to treat your trouble is not always the right way every time 
 
On Fri. while out I had the misfortune to sneeze, wallop both nostrils full bore got out the sick bag from my field kit did my best to hide myself from view eventually it eased, what a mess I was in, back to the car, home cleaned up as best as poss, confined myself to barracks for the next two days.
Now when my nose caps off and dries it is a good time for me it feels secure and yet you can still get a slight breath of air in, and so I am tempted sometimes to leave it in place longer than I should, this time it was a big mistake it dried so hard it broke away while in slumber land through my face pressing the pillow.
Result now it is Monday and I am starting all over again, confined to the house until it dries again, but this time it will be moistened and removed after the usual sixteen hrs.
It takes very little to start my epitasis depending on how it is at that time,
Yawning, big grins,dust,wind,cold,sneezing,physical effort,mucus,of which my nose makes far to much, I do not blow my nose ever, it is cleaned by moistening with vaporized boiled water and then gently cleaning with small cotton buds, not very efficient but it does.
The best environment for my nasals is a good old misty warm day,
Wonderful.
Failing those sorts of mornings, which are few, I use a lot of small cotton wool balls with e 45 cream in the bottom of my worst nostril this helps to keep a degree of dampness which helps, well kind of anyway.

Anyway all would love to hear from all of you how it affects you and your life, how you cope, little tricks to get you by.

COME ON ALL IT’S A GREAT SITE MATTS SET UP GET WRITING, IT WILL HELP US ALL TO SHARE INFO ETC.

Be happy take care.
BOB…….

[philbarto]

Yes Bob the worst part about the nosebleeds is the embarrassment before my closure you could guarantee a bleed at lunch time in front of everyone or in the pub and the cothes I ruined through it all if you swallowed it it came back up so the bathroom resembled a slaughter house. I have now started bleeding from the mouth specially through a loose tooth, which I am having out on Thurs, that is equally embarassing as people ask you questions when the bleeding starts . Dont know if having the tooth out will solve the problem will have to wait and see. It all seems like following a leak through old rusty pipes you repair one leak and it finds another weak spot . I had one side of my nose closed and the other side started and was even worse so I had the other side done and it has started in my mouth although not on the same scale. If having the tooth out does cure it where next.Stil at the moment I can continue working and do most things.Life goes on

[lenny]

Hi Bob, just a quick question are you the Bob that is in regular contact by letter to my sister and fellow sufferer, from reading your posts it seems it could very well be.
       LENNY

[Matt]

Thank you for the kind words Bob.

I agree, it is embarrassing when it happens, however I guess most of the time I just take it with a pinch of salt, and if anyone asks if I'm ok, I just reply with "yeah, happens all the time".

[bob]

Yes Len,It is I,http://Get around a bit dont I for someone who has never took a holiday for 15 years He .he......
Tell your Shirley I am asking after her,and ask her if she recieved the two letters we sent her with the christmas card,time she put scribe too paper again tell her.
Hope she is well,well as well as can be,under the circumstances,and tell her to get herself a cheap pc for the internet she would love it.
Are you still on the post,it must be a trial for you at times out in all weather in the winter.
I am as you can see still ticking over,tried just about everything and achieved no lasting cure,sometimes a short respite is achieved,but it can make it seem doubley bad when it returns with vengance.
But we all get by as we must,and life is precious and good despite it all.
Take care Len.
Say hello to my pal Shirley for me......

[rosedene2001]

Hello Bob, & Hello to all members,
  I have found you at last,
and I see that Len gets on here also,
If you read this Len Give Shirley my love also. that is if you can remember me, (Lily from Notts,)
Similar thing happend to me  Bob just before Christmas,  (not sure if I have told you baout it,)
I went to  carol service at Southwell minster,
 You can guess what happened,
I had to leave the hall my two daughters were with me,
 What a mess I was in, I had a light coloured coat ,
 by the time we got home it was ruined,
The whole situation is more embarrassing,
just because people dont know anything about HHT,
Any way I wont get on my soap box this time,
 Nice to meet you all,  Lily, 

[Tracey]

Hi everyone,
Like you guys, I can fully agree, the embarrasment is the worst part of this.

Last August, I was driving a mini bus full of Scouts from the Eden Project back to our campsite where we were staying at Bodmin.  Typical, when I look back at it.  How could I think I would get through the day without a bleed and at the most inconvenient time too.

I could feel it starting and could taste it too.     All I could do was sniff and swallow (yuck!).  Finally found a safe place to pull over so that my co driver could take over.  I was more worried about the children seeing all the blood than anything else.  I carry disposable ice pack wherever I go.  I find that if you put one on the back of your neck, it can slow the bleeding rather well.  Doesn't necessarily stop it though!


By the time we got back to the campsite, it looked like someone had committed murder in the front of the mini bus, all over the dashboard, up the windscreen and all down my uniform.   What a mess.

The children were taken back to their tents and I stayed with a fellow adult that now understands HHT for about another half hour untill it had slowed enough to get me back to my tent.  But, walking back through the campsite with everyone looking on at me covered in blood was so embarrassing.

Tracey

[philbarto]

I had the tooth out thursday they had to cut it out pack it and stitch it bled for england whilst having it done but it has not bled since which is a good sign as it usually bled twenty or more times a day. Still time will tell if it has been a success.

[Tracey]

Hi Phil,
I hope it wasn't too painful.  Fingers crossed that it is successful for you.  I have had many problems with bleeding from my mouth, with quite a bit of cautery there too.  So hard to stop the bleeding in there.  I usually try sucking on an ice cube, normally helps.

Tracey

[lenny]

Hi Bob and Lilly sorry Ive not replyed before only jusy read your e mails yes Bob she got your letters she showed me them when I went christmas day,nice to be in touch with you again.I know from your letters she updates you as to how I am doing. I keep telling her to get another computer  but shes a bit warey after the last one was a bit of a disater  but once I tell her you and Lilly are on this site she might be willing to splash her cash.Nice to hear from you as well Lilly of course we remember you I will contact Shirley asap and pass your message on sorry to cut this message short as I have a visitor will try to email again tomorrow, take care   
               Lenny

[rosedene2001]

Hi Lenny,
      Good to hear from you again,
 Tell Shirley, we look forward to her joining us,
 It will be lovely to have a chat with her,
 How is she by the way,
 is she keeping any better,?
Look forward to hearing from you,
 Lily,

[lenny]

Hi Lilly Shirleys about the same not been to good recently shes lost quite a bit of weight not down to hht just some bug I think, we are trying to carry on as best we can as you know we get good times and bad timeswith the nose bleeds at the moment things dont seem to bad for shirley , saying that there not that good either ,if you can understand that.Ive been ok until last week when I had a few bad days now feeling a bit low and very tierd a lot of the time can probably, win an olimpic gold medal for sleeping ,touch wood only had a small bleed today probably not to much blood left to loose. sorry to be on the negative side as you are probably aware I am trying to get as much info as I can of others on this web sight about the youngs procedure as other things do not appear to be working at all. This seems to have a much better sucsess rate at stoping nose bleeds , so if I can am going to give it a try Lenny

[Annie]

Hi,

My name is Annie. I just joined the forums. I found you by searching the web about nose bleeds. I don't know if I have HHT. I need to be diagnosed.

I had a lot of nose bleeds when I was a child around seven & eight. I remember bleeding for a long time before they would quit. Mostly I remember being afraid. Later into adolescence, my teen years. My early adult years too none - until just a few years ago in my early fifties. I had a couple maybe two a year.

The dam broke at least a month or so ago. The first day's a regular bleed. Then I would wake from sleep running for the bathroom stuffing tissue in my right nostril. Hanging over the sink taking the tissue out just to gush into the sink. I do this nearly every day. It can be a light amount or it can gush. It takes about fifteen minutes to get it calmed. There is usually a clot I wind up swallowing. I have had more than one bleed a day.

I have a feeling this isn't going to just go away. I have a Dr an internist. I'm on medications for blood pressure & cholesterol. I also take medicine for panic attacks. When I go again I will need to tell her. One of my biggest problems is fear. I don't go to bed because I could wake to bleeding anytime during the night.

It has been nice to read from other people what I'm going through. It is comforting.

Annie

[philbarto]

Hi Annie
          welcome to the site . The symptoms you are experiencing are familiar probably to a great majority or the forum members. It really is important that you get yourself diagnosed as an HHT sufferer as further problems can occur I am not trying to scare you but if you have any children they can have HHT too as it is hereditary and they would probably require screening .Ask your GP if there is a specialist hospital or clinic who treat people with HHT in your area there are various treatments which could be successful for you but until get screened and confirmed you can then  access the benefits of any treatment which may be offered to you. If you read through this forums topics you will learn a lot about hht the various symptoms and treatments. Myself suffered nosebleeds to the degree of having to have blood transfusions to return my blood count to a better but not perfect level I then had a procedure called youngs procedure or nasal closure which for the last two years been successful to me .It is in your interest to get the necessary screening before any treatments can be accessed.
all the best

[Annie]

Phil,

Thank you for the advice. I have to be diagnosed with HHT first. That all starts with my Dr. I had a bad bleed last night after posting I felt congested then it came. I use tissue & it was saturating every bit I could put in. It was over after fifteen or so min's. Now to wait for the next one. I have them at night more.

This is debilitating because you live around a nosebleeds, not your life. I will be getting to the answers to this. Right now this is a comfort to have found this forum.

Annie