Late night out: I’ve been cursed with intermittent... - LUPUS UK

LUPUS UK

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Late night out

Spotty-ewe profile image
Spotty-ewe

I’ve been cursed with intermittent nosebleeds since childhood and on one occasion my teacher Mr Osmond had to lend me his large gents handkerchief. My Mum sent him a boxed set of 3 gents hankies as a thank you together with his laundered hanky. Anyway, the nosebleeds became regular during my 2 short pregnancies when I was told my left nostril had a vein that needed to be cauterised. But when I wasn’t pregnant my nose didn’t bleed as often so it never happened. Then last year the nosebleeds became regular again and at 65 I knew I wasn’t pregnant! The left nostril was the problem again and my Rheumy referred me to ENT. They cauterised the offending vein in the left nostril in October and that was the end of the problem. Or so I thought!

On 5th May while bending over sweeping up some crumbs my nose started to bleed. It was my right nostril this time. Since then I’ve had a few more nosebleeds from the right nostril and each time the bleed lasted longer. Then last night just before midnight as I was preparing to go to bed the king of all nosebleeds hit me. I ran for white cotton cloths I keep for window cleaning and soaked 3 of them in no time. My nose was gushing and hubby became so concerned he phoned emergency services. Of course being on aspirin for angina didn’t help. They said they were VERY busy last night but arranged for a clinician to phone us back. The bleed stopped about 12.43 but started again at 1am. The clinician phoned and said hubby could either run me to A&E himself or she would arrange for an ambulance but it would take some time. She recommended pinching my nose and not sniffing or blowing. By this time I had soaked a further 4 tea-towel sized rags. Using an old linen napkin to squeeze my nose we began our 12 mile journey to the hospital.

The roads were empty and the hospital looked deserted. The receptionist in A&E was expecting us and we were taken straight to a small room where the nurse took my BP which was raised and then left us until the doctor could see me. It was after 3.30am before he could see me and immediately decided the right nostril needed to be cauterised. He went for the relevant equipment and did it there and then. Armed with cream I’ve to apply 3 times per day for 2 weeks I staggered out of the hospital grateful for the support of hubby’s arm who like me felt drained. But this beautiful sunrise greeted us as we left A&E at 4.53 this morning, and the dawn chorus birdsong was an absolute delight. If it hadn’t been for the dreadful nosebleed we wouldn’t have experienced this. It was also our first late night out in many years!😂 Not that I want a repeat of this experience and I pray I never have another nosebleed. 🙏🏻 But I wanted to share this experience with you and wondered if any of you are prone to nosebleeds.

Wishing you all a lovely day. 🤗😘

27 Replies

Oh spotty.....fingers crossed that's the end of them .I hope you rest up for a few days...no sweeping up crumbs or weeding .I'll be checking 😏 x

P s as beautiful as the sunrise and dawn chorus are choose somewhere more romantic next time lol xx

😂😂 Thank you so much SML. We had planned a day in Carlisle today, but I think we’ll be catching up on sleep instead. 🤣 Yes, we’ll have to choose a better setting to enjoy the sunrise and dawn chorus another time.😉 🤗😘xx

Carlisle will be there tomorrow x

And I trust we will be too. 🙏🏻 😆 Have fun on your picnic tomorrow. 🤗😘 xx (No idea why this has suddenly gone to italics!??)

Oven just going on for cakes 😄

Yum! Don’t forget your friends. 😋 😆 xx

Oh Lord when I read this I felt for you. I had my left nostril cauterised two weeks ago. I have never been prone to nosebleeds other than the twice I have fallen on my face and completely fractured my nose ( it was flopping around on my face ).For a few months I have had a post nasal drip that has woken me choking on gunk. The GP tried Nasonex which did nothing. The Respiratory Consultant gave me Avamys which again did nothing. My nose became blocked, ears popping etc so the GP told me to do nasal ablation( salt and bicarbonate in warm water snorted three times in each nostril three times a day). Horrible as it was I was horrified at the stuff coming down my snout and for five days I could actually breathe better but then it became pure blood. Not only when I did the ablation but 4 or five times a day for 10-20 minutes. The worst part was it would bleed in the night and I would wake with my throat, mouth and nose full of blood, unable to breathe twice or three times every night. I rang the Surgery to ask advice and was told they were too busy and I coukd not speak to anyone. I rang NHS 111 who were fab and told me I must be seen by a GP within 24 hours. I rang the surgery again the next day and was told someone would ring me back. I told the GP the nosebleeds were increasing in volume and frequency, she suggested I pinch my nose and asked if I was over anxious 🤬.The following day I had a Respiratory appointment. As I sat in the waiting room with my mask on my nose just spouted with blood. It rang under and around my mask, dripping down my jumper. I was trying to pinch my nose through the mask but it ran down my arms and over the floor. The nurse came out and was horrified. She was angry when she heard that I had been this way for eight days. She attempted to clean me up but it just would not stop. She was wonderful and arranged for me to go to A&E in the new hospital 20 miles away. Like you my nose was cauterised. The ENT registrar told me that the skin in my nostril was excessively dry and had split. He felt it was Bechets that caused it?

Sorry long story but I very much identified with your predicament. I hope your issue is resolved now. Funnily enough my BP was 153/101 and it was my left nostril too xxx

Thank you for your story Cecily although I’m very sorry to hear what you have gone through. I too have used the salt and bicarb - not pleasant but it does work. I was also prescribed Sterimar nasal spray, after the first cauterisation, which is easy and more pleasant to use than the homemade salt and bicarb mix. The cream I’ve to use now is Naseptin Nasal Cream. I think that is what they gave me after the first cauterisation too. How strange that our left nostrils are in tune with each other! 😂 I’m so pleased we have both been sorted now and I hope neither of us have a nasty bleed again. 🙏🏻 Thanks again for sharing your experience Cecily and for your understanding. 👍🏻 Love and hugs 🤗😘xx

I am on my second tube of Naseptin too. It was so strange when I read your post. I did wonder whether dry eyes, dry mouth, dry skin, dry hair whether there is a connection with Sjogrens? I can feel a soft blockage in my left nostril but am unsure who to ask about it. I literally am getting no air through it and it is so tempting to blow it. My GP clearly is not interested, the ENT doctor said I did not need a referral to ENT. I haven’t been under them since the last time I fell on my face and broke the bridge of my nose and the cartilage. We are poor mortals lol Take care lovely xxx

I can definitely relate to the dry skin, dry eyes, dry mouth and throat, dry hair, dry brittle nails and dry other unmentionable places. All related to Sjogren’s I’m sure as perhaps the nose is too. Hadn’t thought of that. I know ulcers in the nose which I used to get are related to Sjogren’s but in your case if skin has cracked in your nose it sounds like that is the cause too. 🤔 In my case it seems to be vessels in my nose erupting for some reason which is why I wondered if it was connected to raised blood pressure. But the doctor I saw said no as I’m not on any treatment for high BP and my readings range from normal to only slightly elevated he didn’t think there was a connection. So another mystery never to be solved. 🤷🏼‍♀️I wonder if the blockage stopping you from breathing through your left nostril is connected to your broken nose? My Dad had a broken nose when he was young (boxing) and said it was hard to breathe through one nostril. We are full of mysteries aren’t we? 😁

Love and hugs 🤗😘xx

I think the ENT doctor who saw me was so rushed he looked no further than three patches of cracked skin. I was taken off aspirin by my GP and my Amlodipine for BP doubled but it made no difference. The wait to get my nose cauterised was five hours and I had to wait another two before they allowed me to leave. We left home at 9.30 am to go to one hospital for the respiratory appointment and got home at 7.30 pm from another. I think if the damned thing ever starts again I will go there in the early hours too. He did say it is very likely to reoccur and next time I might have to be admitted and plugged. Hopefully not 🤞🏻 It is weird that some things seem to happen that are never explained to us. Big Cwtches and lots of love back to you lovely xxx

I’ll keep my fingers crossed for you Cecily that your nose won’t need to be plugged 🙏🏻 Yes, early hours are best with the chance of a lovely sunrise at the end of it. 👍🏻 🤗😘xx

Thank you so much xxx

How awful spotty - sounds horrendous , I hope you managed to get some sleep when you got home- gorgeous sunrise - I don’t get nosebleeds but suffer with nasal sores more or less most of the time and my nose bleeds from these which is most unpleasant - hope you don’t get any more nosebleeds xx

Spotty-ewe profile image
Spotty-ewe in reply to svfarmer

It was quite frightening SV when it just didn’t want to stop bleeding and at quite a rate at times. But all good now and yes thank you we managed to get a wee sleep when we arrived back home and a few snoozes during the day.🥱😴💤 I get nasal sores too but fortunately mine don’t bleed. That must be awful. Thanks for your kind wishes. It will certainly be an early night tonight. I’m sure it might be another good sunrise tomorrow, but I won’t be going to look at it! 😂🤣. Hugs 🤗😘xx

svfarmer profile image
svfarmer in reply to Spotty-ewe

🥰

Hi spottySorry you’ve suffered the dreaded nose bleeds again, I do hope this is the last of them 🙏🙏 not the late night you want but lovely sunrise to greet you after the experience 👍 hope you both resting well and take care , thinking of you 😘🤗x

Spotty-ewe profile image
Spotty-ewe in reply to stiff19

Aww, thank you so much Stiff. Still feeling a bit headachy and lacking in energy but I’m sure more rest and wholesome food will soon sort that. I’ve been thinking of you too and wondering how you are getting on? How is your daughter’s foot healing? I hope it is getting back to normal. Love and hugs to you both. 💖🤗😘xx

stiff19 profile image
stiff19 in reply to Spotty-ewe

Yes take it easy, I bet you are lacking energy but you sound like you have that covered 👍🙏 Thankyou her foot seems to be healing be it slowly, she’s still hobbling and it swells lots still. We have a phone appointment soon, it’s ok but there’s no covid cases here now, I find the telephone appointments frustrating 🤷‍♀️

Much love and hugs too, take good care and hope you feel better soon 😘🤗💐xx

Spotty-ewe profile image
Spotty-ewe in reply to stiff19

How strange they are doing a phone appt when really they should be looking at her foot especially when it is still swelling a lot. Might be worth asking them if they’d look at it when you speak to them on the phone. After all the cauterisation of my nose had to be done face to face and without me wearing a mask obviously, and I saw my Rheumy twice face to face during lockdown. 🤷🏼‍♀️ So no harm in asking. Thank you for your very kind wishes. ❤️🤗😘xx

stiff19 profile image
stiff19 in reply to Spotty-ewe

Strange is one word 😉 there are times phone appointments might be ok but not all. It’s gone too far, I also think it’s a cop out, I’m glad you got face to face, I still haven’t 🙈🤣How is your nose, has it done the job so far 🤞 ? 😘🤗xx

Spotty-ewe profile image
Spotty-ewe in reply to stiff19

A cop out sounds about right! 😡 I think I would voice my concern about R’s foot when they phone and ask if they’d be prepared to look at it because there is obviously still something wrong. Have they x-rayed it? Even oridnary x-rays don’t always pick up everything evidently as my pal in Australia just told me. She hurt her hand and the first x-ray didn’t pick up a fracture, but it was redone a week or so later using a dye injected into the area and this time the fracture showed up. So worth persevering I think. And you not getting a face to face is scandalous! 😖 Please keep pestering them until they do something. I’m not bad thanks Stiff. No more nosebleeds so far.🤞 Feeling a bit fragile and more unbalanced (in every sense of the word 🙃) than usual. So taking it easy for a few more days and enjoying ☕️🍰. I’m scared to bend too much so the weeding will have to wait. Hoping you, R, Jag, Kia and the chooks are all enjoying the better weather. Love and hugs to you all 🤗😘🙏🏻xxxx

stiff19 profile image
stiff19 in reply to Spotty-ewe

Yes they just did normal xray , which you’re right don’t show everything .

Excellent glad you’re taking it easy and 🍰☕️Sounds good to me 🤣 yes the weeding will still be there so it can wait.

We are ok Thankyou , we’ve been taking jag to beach at 7am all week to avoid the hot sun though a great change from rain 🌧👍

Take care 😘🤗xx

Spotty-ewe, Oh my goodness! That had to be so very frightening. I so hope you don't experience anything this severe again with your nose. I love your attitude about enjoying the beautiful sunrise after your ordeal. I hope the beautiful sunrise was a sign that things will get better for you.

Healing hugs.

Thank you so much Pumpkin. Yes, it was frightening as although I’ve been prone to nosebleeds pretty well all my life I’ve never had one as severe or for as long as this one. What a lovely thought that the glorious sunrise was a sign of things getting better. 😃 I love that and I’ll hold on to that thought. 🥰 Thank you Pumpkin. And I hope all is good for you. 🙏🏻 Thanks too for the healing hugs - always appreciated.💜 Take care Pumpkin 🤗😘xx

Oh Spotty - what an ordeal for you to go through, and so much blood, that must have been quite scary for you and hubby. I’m glad to hear that you got it treated and were greeted by a beautiful sunrise! I don’t suffer from nose bleeds but have a dry nose along with dry mouth and eyes. Always chugging back the water and dripping in the eye drops! I hope you don’t have to go through that again, big hugs as ever 🤗😘🤗🌞

Aww thank you HW for your hugs and sympathy. 🥰 Much appreciated when I feel so drained (literally) and a little more fragile than usual. But it is a good excuse to sit around enjoying coffee and cake. 😉 I could really do with one of your lavish Mrs C’s cappuccinos right now. 😋 Fancy popping over? Love and hugs as always. 🤗😘xx

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