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Behçet's UK
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Nosebleeds.

Hi just a quick question. Does anyone suffer from Nosebleeds. I have had a few spontaneuos ones over the last couple of years. But quite often have a small bleed when blowing my nose! Just wondered as I have never suffered from them before.

PS Hope the snow is not stopping anyone get to hospital appointments. I am in Wiltshire and we have lots of snow (but still made it to work)!

Hugs

Angela

x

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I quite often have nose bleeds Angela but the BD has run riot inside my nose and there is a hole right through the septum that divides my nostrils - that is from an ulcer that got too big for its boots and didn't know when to stop!

I have experienced nosebleeds my entire life, some of them quite dramatic and, although the perforated septum (which bleeds spontaneously) is definitely Behcet's related, I'm not sure the other nosebleeds are. I view them as a pain in the bum but no more than that. I suppose if you are experiencing a lot of them,then this could theoretically lower your Hb levels?

It snowed quite heavily here in the night - there was about 2" settled when I looked out at around 3 am but then it turned to rain and by the time the world got up there wasn't a trace of snow left :-(

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Oh lucky you. We have about 4" of snow and its still falling. Managed to drive to work but think I will have to walk home and we have a hill that leaves my work place and it is looking precarious to say the least. It's only a 25 minute walk but having a small flare up at the moment and my bones ache like a 90 year old. I have an outbreak of body ulcers and feel like pooh, but I will get my OH to meet me and keep me upright! Oh the joys of winter and BD.

As for the nosebleeds, I agree and do not think it is BD but thought I would ask as I only seem to be getting them since the diagnosis. I tend to blame everything on the blasted disease.

Hope you dont get a late flurry and get snowed in!

Hugs

Angela

xx

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I don't mind being snowed in just so long as my family is here. I'm feeling particularly warm and snug (cos I upped my anti-depressants!). Nice feeling though

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Hi Bailey, I have always had nosebleeds from being a child but it gets worse at times if I'm in a flare (although these days I can't tell if I am or not sometimes as it seems to be constant in many ways) I have sinus problems too and ear nose and throat difficulties all my life so can't really say if it is connected or not. I have read somewhere that BD people have larger than average Sinuses but can't for the life of me remember where I have read it, I've trolled through so many piles of literature about BD looking for clues in the last few years. Has anyone else read or heard this ? Maybe asking an ENT specialist might reveal something? My GP deals with my problems in this area so perhaps I need to see another consultant for ENT and ask them. Big hugs xx

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Thanks Xandii

I am not sure if it is BD but also suffer from regular sinus infections in the winter, this may have something to do with it!

Cant blow my nose today for risk of starting another one! I am at work and really dont want to be bleeding at my desk! Never mind. I think we all have the patience of saints dealing with this BD.

Hugs

Angela

xx

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Hi Bailey,

Have you read the information on the BSS site for 'venous sinus thrombosis' which talks about the abiity for BD to simulate the above which causes intercrannial hypertension in neurological BD ? It comes under headaches in BD. Interestingly, I had very serious Benign Intercrannial hypertension in 2010 when I developed serious lesions and ulcers on my lower legs which burst with water/yellow liquid for over a year. I was on a drug called rosigliterzone which is a diabetic drug (I am also diabetic) which was banned in the USA because it causes this and I was very lucky not to have expired because of it.(another very close call) I saw a neuroogist and he had suspicions about the connection with BD as well. The BBC did a programme on the drug and the next day the UK took everyone off it and it is no longer generally prescribed. I stopped taking it immediately and within a year had lost 6.5 stone in weight which was water retention and I'm still slowly dropping without specifically dieting. It took nearly 2 years for my legs to heal and I am left with very loose skin that is paper thin and bruises and weeps easily. God bless district nurses who came for the whole 2 years sometimes 2/3 times a day to change bandages at first. I have purple scars 8 inches thick all around both ankles which will never go. I am not trying to frighten you but I do think you shoud get some advice from possibly a neuro BD if the nosebleeds continue just incase it might be connected to this VST thing. Sorry if I'm worrying you, I don't mean to and my circumstances were pretty unique. Take care hun, big hugs xx

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That makes sense as I suffer from headaches and have had a brain scan which showed I had Vasculitis in the brain. It was mild and I now take a high dose of Amitriptyline each night. This has reduced my headaches but I still get less severe ones. I am seeing my consultant in 2 weeks so will definately mention VST. Thanks for your info. Bigger hugs to you as it sounds horrendous what you have been through. I am fortunate to have only small flare ups but quite often. My meds work for me even though at 41 years of age I shouldn't really have a Dossette Box lol.

Hugs

Angela

xx

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