My Bleed: Just over a week ago, on a Saturday... - AF Association

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My Bleed

jeanjeannie50
jeanjeannie50

Just over a week ago, on a Saturday evening I had a severe nosebleed. My neighbour came over, saw the state I was in and called an ambulance. Paramedics arrived and they couldn't stop it, so took me to A&E.

When I saw a doctor there he asked how long it had been bleeding at that rate, "Two hours", I replied. His response was, "Well you've probably lost at least half a litre of blood already". He couldn't stop it, even with cauterisation and I sat there spitting blood into kidney dishes, once one started to fill I was handed another. It's a strange experience looking at a dish of your own blood! He said it's going to take you a while to get over this and I asked if he meant days, but the answer was weeks to a month. I started feeling dizzy and was put on a saline drip, but before then I had what's called a balloon dressing inserted. This was literally shoved right to the back of my nose and then inflated (my goodness did it hurt and yes, I made a fuss) . The ends were taped to the side of my face. It appeared to halt the bleeding and I was admitted to an emergency ward. Later I was transferred to an ENT ward. By this time my nose had swollen to about twice it's size and one eye was almost closed from facial swelling, everything ached including my teeth. I can tell you I sat and cried and couldn't stop, tears just poured down my face. When my daughter came to bring me some items from home, she cried too when she saw me. Never, ever have I cried in public, don't think I've cried for umpteen years.

I spent two nights in hospital (stopped taking my Warfarin while there) and then the dressing was removed, it was a relief to find that it didn't bleed again and after a few hours I was told I could go home. No explanation was given as to why it occurred and when I said what if it happens again, I was told it rarely does.

I was told to restart my Warfarin the next day, Tuesday, but it didn't feel safe to do, so I rang my GP's surgery. A really lovely male Advanced Nurse Practitioner rang me back, he listened to what I said and sympathised, even managed to make me laugh. I spoke of my fear of the nosebleed starting again and he agreed for me not to restart my Warfarin, but to talk to him again on Friday. "Are you there all day Friday", I asked. He answered, "yes", paused and then said, "Of course if I win the lottery I may not be". It made me laugh again and I needed that.

The upshot is I started the Warfarin again yesterday (Monday). As I self test at home I've been told I can check my INR as much as I want, if it makes me feel safe. I just know that's what I'll be doing.

What started the nosebleed? Just bending down to pick my reading glasses up off of a coffee table. I must just say it had bled slightly earlier that afternoon too, but I'd managed to get it to stop. My fear of having such a heavy nosebleed made my BP go sky high and I guess that started a vicious circle.

Someone has asked on this forum today about the risk of a bleed through taking anticoagulants and that has prompted me to tell my story. I could not go through that again, would honestly rather shoot myself. Should it happen again I can tell you I would never take anticoagulants again. The experience I have had has made me rethink how I feel about them.

Tomorrow I go for a full blood test to see how I'm recovering, have felt tired and sleepy, but feeling stronger each day.

Jean

154 Replies
oldestnewest

De Kakur (tomorrow) is really good on AC so you could put the question to him I think. As he's a stroke consultant he knows about bleeds too.

jeanjeannie50
jeanjeannie50
in reply to rosyG

It's likely I'll be a silent watcher Rosy. If you want to ask any questions on my behalf please do. Nothing you shared of my story would offend me, so don't worry about that. When next anywhere near a shop that sells PC cameras and microphones I'll buy them.

Jean

My late husband was on warfarin and suffered with no end of nosebleeds, was a nightmare at times as they just started spontaneously without doing a thing.

I've had nosebleeds all my life, so I'm used to them, but it has always been blood from my right nostril. This latest bleed came from high in my left one and was far heavier than I've had before. Yes, I too had done nothing to start it.

It's interesting to hear that your late husband had them too and was also on Warfarin.

Jean

Oh Jean! What a terrible experience for you . I bet you're pleased you have your Coaguchek testing kit now .

I would feel the same as you about AC s if it happened again.

I hope your daughter is keeping an eye on you.🤒

Do take it easy and keep us informed.

Sandra x

jeanjeannie50
jeanjeannie50
in reply to Jalia

Hi Sandra, thank you for your response.

My youngest daughter was very attentive for the first few days, but I'm forgotten again now. She has re-affirmed that if I want to put money into a property with a granny annex with them, they'll do that when I'm ready and if I ever need care she will give up work and look after me. I just feel at age 69 it's a little too early for that. I know I could move closer to her, she's only about 8 miles away, but I love the little fishing town where I live and it's a bit more rural where I am.

Jean

Wow. That sounds very frightening Jean. Glad you are better and back home. I myself wonder whether the bleed risk from anti-coagulants may outweigh the stroke risk for some of us. Thank you for sharing your story.

Kim

Before this episode I'd always pushed that anticoagulants were the way to go. I used to help run a nursing home and have witnessed the effects of a severe stroke and wouldn't wish that on any one. My dad died after a stroke, but he was 88 and the healthiest eater possible. I'm confused as to what to do really, so my idea is to keep a low INR from now on, say 2.3ish.

Jean

Best wishes for tomorrow’s blood test.

Pete

Thank you Pete.

Just remembered one thing about my similar incident, my blood pressure was very high that night.

Did you check yours and was this mentioned by the docs in A&E?

Hope it has been stable since.

Pete

Yes, my blood pressure went high because of my anxiety, it was something like 175/110 (normally 120/62). It stayed that way in hospital and I begged to be allowed to take some extra beta blocker that I had with me, but I was told I could only take what the consultant said I could. I must admit I told the snotty nurse not to insult my intelligence! I can be snotty too when I want. Lol

😂😂😂

Yes it can be so irritating. You can understand that they can’t just have patients taking their own medication whilst under their care. However is is not what they say but the way they say it.

Pete

Oh Jean, what an absolutely terrifying ordeal.

Having just started Apixaban in late January I have had a few minor nosebleeds so it's my biggest fear having a major bleed.

I cannot see myself ever feeling settled taking an anticoagulant only hope for the best.

Take care 🙂

PS, I hope I don't have a nightmare tonight now 😱

Thank you for your concern.

I hope you don't have nightmares too. Mine was a living, wide awake one and it has left me totally traumatised. At least on warfarin and with my own testing machine, I have a little control over the level of my blood clotting and from now will make sure it's kept on the lower side.

Jean

What a bad time you have had Jean. I would have been terrified.I hope your next blood test is fine.

Thank you for your good wishes.

Yes, terrified is what I was! Fortunately I have my own blood testing machine and that will certainly be getting a lot more use now.

Jean

May I just start if by saying I’m so glad you are home now and that the bleeding stop I can’t imagine what you where going through at the time, what got me was when you said you were filling up your kidney dishes with blood what a terrifying experience, I’m no expert on anticoagulant but why would it cause that you think?

Thank you for your concern.

I have no idea what caused it, other than my INR was a little high at 3.3. Yes, seeing all that blood of mine was quite horrifying and I was afraid I would choke on it. I desperately wanted to walk out and the nightmare to stop, but of course that wasn't possible.

Jean

My heart goes out to you. What a nightmare. I hope they checked your iron levels.

I have had 2 big bleeds. The 1st time I was NOT on anti-coagulants, the second I was. So it can happen. The first was after my mastectomy when something (stitch - cauterisation?) popped internally. I lost more than 5 pints internally and went into hypo-volaemic shock, shaking from head to foot incontrollably. I well remember thinking I was on the way out. Then a brilliant handsome doctor appeared and said the magic words - don't worry we can fix this. He started shouting for drips and transfusions and wheeled me through the darkened hospital to an operating theatre, and when I woke up he had indeed fixed it. I went home after a week and felt properly better after a month. Just so you know - you will feel better.

The second time was after some minor gynae surgery. It seemed to be gushing on and on all over the place...frighteningly...and I dialled 999 first time ever. I was on apixaban but it wàs only four hours before the next dose was due. They were able to reverse the bleeding with a drug and the apixaban doesn't linger in your system so was it was stoppable. So on balance I will continue with the anti-coagulants rather than risk a stroke from clots. I will be ultra careful about my nose though. No hard nose blowing now after hearing your awful experience.

Take care and take some iron if it suits you... x

You know, before leaving hospital I wasn't aware of having my blood checked at all. In my dazed state it could have been done I guess. If the nurse I spoke to at my doctors surgery hadn't said I needed it, I wouldn't be having one today.

Your first story of your bleed and the handsome doctor reminded me of a Mills and Boon type story, but it must have been terrifying for you. You really do have to experience something like this to truly understand the fear.

I've been eating a lot of green salads and eggs to up my iron intake. Will see how my blood test goes, I hope they'll get the results back quickly. As my appointment's not until 12 today I guess it will be tomorrow.

Jean

Jean, I am so very sorry to read of your experience. What an absolute nightmare. That said I am glad you are coping OK.

Funnily enough, reading other things on here recently has made me rethink my good fortune in being fit enough to carry on working and bus driving.

My next DVLA Medical is in late September, we'll see if I pass ?

But that is not the point.

I think back to my early days on Warfarin and Bisoprolol . I went through a period of violent random nosebleeds, all occurring during bus driving shifts. A nightmare indeed in those circumstances with passengers on board.

I went to my GP and complained as I seemed to know intuitively that in my case it was not the Warfarin but the Bisoprolol.

At the time I was taking Bisoprolol as originally prescribed by the then consultant. In the morning. My GP changed that to the evening. I have never had a nosebleed since. Gotta be some 10 years now. It maybe that in my case there was some interaction with the 2 drugs which corrected itself by changing the time of day taking the Bisoprolol.

Don't forget, Bisoprolol is a very powerful bit of kit. Are you on it or another betablocker?

I am still taking both drugs.I mention this as you may wish to explore this with your medical team.

Are you self testing with Coaguchek?

Take care. May the force be with you.

John

Thank you for your kind wishes John.

I take the beta blocker Metoprolol alongside my twice daily Flecainide . A few days before the bleed my INR had been 3.3 , from now on I'll make sure it's 2.5 or under. Though many years ago it went up to 6.3 with no effects whatsoever. I can't help but wonder if I ate something that caused my horrible event. I'd just started reducing my warfarin dose by 1mg a week too, but perhaps I should have done it quicker.

Yes, I'm self testing and and have been told I can do that as much as I want. My lancing machine is pretty useless at pricking my finger, so I've been prescribed some complete disposable ones. The staff at my doctors surgery are certainly not mean in any way with their prescribing.

You certainly are lucky having a good fitness level and being able to carry on working, long may that continue.

Jean

Hi Jean,

Funny you should talk about a raised INR and something you ate. This year for the first time I have had difficulty in keeping within range and especially in the last 2 months. Currently I am stuck on 3.4. My INR Nurse is adjusting my warfarin dose BUT I am sure it's all down to my greens I eat. Even odder is the fact that with the increase in INR I have been experiencing a return of my bowel/digestive issues. The first problems for years. So I now have to do a bit more research on greens in the context of warfarin and digestive issues.

I hope you continue recover and get your life back again.

John

John, I'm sure the Fodmap diet says no greens and I thought you followed that. I do to a certain extent and it's made a big difference to my bloating. I think our problem may be that eating greens, salad etc takes our INR down, but when we stop for a few days it can shoot up.

Jean

Hi Jean,

Yes I did/do follow it ....bit like you ... to a certain extent. Initially I was trying to get the bloating under control but - back in the day - I concentrated rather more on the sugar side of things and eliminated fruits with sugar, not that I was ever a big fruit eater.I then found a connection with green veggies ....initially runner beans and left it at that. It seemed to work. Later peas came into the equation and now finally Broad Beans.

Sitting back now and doing a bit of analysis my green veg intake is basically pulses (Inc. Broad Beans) and green leaf veggies ( including Brussels and Cauliflower, Brocolli and Cabbage and Spinach etc.). If you see what I mean.

Now for the last two evening meals I've had no green veg of any sort at all. Digestive issues settled. I'll do another INR test in the morning. According to the INR Law of Veggies best I keep to green beans, peas, carrots, cauliflower, tomatoes, peppers and parsnips ............ problem there is I hate root veggies, especially parsnips - 🙂, green beans and peas and broad beans and peppers and carrots are out so I'm down to Cauli and Brocolli and Brussels - and cabbage and spinach - the latter 4 are not recommended due to high levels of Vitamin K.

So its all a damn balancing act between keeping my gut sorted and my INR in range.

Tonight I'll try Cauli only with the evening meal and then INR test in the morning. Then maybean ultra small helping of Brocolli the evening after. See how it goes, trial and error. When I have a few days off I'll do some Warfarin Diet research - plenty of material around. Failing that ........ I have a feeling its back to my Nutritionist.😟

What I just don't get is having had a dream run for so many years why its all gone off the rails in the last 6 months.

All that said, no way will I come off Warfarin .... at least me and my gut know where we stand at the moment. Goodness knows what would happen if I had to play around with NOAC's like some people do.

Hope your bleed continues to stay controlled.

John

I wonder if the warmer weather making us a little dehydrated is to blame for our fluctuating INR results. I joined the Surrey AF group via Zoom today for their meeting at 5pm and an EP there said that drinking more water could raise our INR. Have you been drinking more water?

Jean

Buffafly
Buffafly
in reply to carneuny

I can only eat broccoli without side effects. All other green veg are a bit of a lottery. Last year my husband grew two types of dwarf French beans. One type was ok, the other caused havoc! I sort of follow the NHS IBS diet.

The FODMAP list I have pinned to my fridge does list some greens as Low-FODMAP and okay to eat: kale, lettuce, spinach, bok choy.

Ah, I didn't know that spinach and kale were on the ok list. I guess I may have avoided them a little because of being on Warfarin. The trouble when you live on your own is there's only you to eat a whole bag of anything.

Jean

That's true - they would be high in Vitamin K so probably on the no-go list for warfarin.

So glad your home what a horrible experience for you godwilling it never happens again xxx

Thank you Kevin.

If it happens again my Warfarin will be in the bin!

Jean

Sorry to hear about your experience Jean. I'm pleased to hear you are back home and feel a little better. Still a shock to the system though !

Take care and take things easy for a few days.

Paul

Thank you Paul. Yes it certainly was a shock to my system and I felt traumatised by it for about a week afterwards. I was so grateful to have the lovely, kind and understanding nurse who really listened to my concerns. I believe he'd been an army paramedic in Afghanistan, was telling me how he had advised soldiers who suffered from nosebleeds in the heat to put Vaseline inside their noses to stop the membrane there drying out. That made me wonder if the hot weather we'd had was the cause of my bleed.

Jean

Oh dear Jean, how dreadful for you, I am not surprised you cried. You poor thing I really feel for you. I can’t come up with any helpful suggestions but just hope you soon feel better and that someone can find a solution to put your mind at rest. Bless you. Tricia x

Thank you Trish, each day I'm feeling a little better.

The nurse I spoke to at my doctors surgery said he wasn't pleased to hear that I'd been given no advice as to what may have caused the bleed. Why on earth didn't I ask someone that important question when in hospital! I'm losing the plot!!!

Jean

I’m not surprised you didn’t think to ask - you probably had lost the plot at that time. I remember it happening to my Mum and I think her BP was monitored for a while, it also happened to my Dad several years later, they lived in Yeovil at the time and he was admitted to Dorchester hospital despite the fact that Yeovil has a perfectly good hospital but I was told that the small ward he was on in Dorchester was specifically designated for nosebleeds. I thought it a bit odd but didn’t think to ask the why’s and wherefore’s! I hate to say it but I just assumed it was an age thing - and until you are ‘that’ age you just sort of dismiss it. Nothing to stop you doing the research and asking the questions now, I guess you will. I’d be interested to know what you find out. I’m on Apixaban, I don’t know if these ‘new’ anticoagulants are any less likely to cause a problem than Warfarin but I guess that’s a question worth asking. We never know what’s round the corner do we, but perhaps it’s a good job! Good luck, look after yourself and get strong again. Xxx

I do feel for you, it is a horrible experience.It happened to me a couple of years ago and the pain when they put that Thing up my nose nearly sent me into orbit!! After 2 days I was sent home with advice to sneeze through my mouth and keep the inside of my nose moist(Vaseline) So far so good and no reoccurrence also I never stoped the Warfarin. Best Wishes Jo.

Thank you for your good wishes Jo.

It's interesting to hear that you've been through the same thing and it hasn't happened again (gives me hope). I'm wondering if the long period of heat we had beforehand could have caused mine. Was it summer time when you had your bleed?

Jean

Mine started with an over enthusiastic face clean, but the previous day I had done a couple of very loud sneezes so I think the sneezes made the blood vessels vulnerable and the the deep clean put too much pressure on the said blood vessels,, as far as I can remember it wasn’t summer.

I spent the weekend in hospital and when they pulled the plug out I went rigid!! Fingers crossed keep sneezing with an open mouth and treat your nose gently and use Vaseline.!! PS It was March 2017. Jo.

Yes, I've been very aware lately that I mustn't press so hard on my face when washing. Do you know if your bleed was high in your nose, mine was? So pinching did nothing to stop the flow.

Jean

Yes mine was high on the right hand side another thing I do is NOT to blow my nose too hard as I certainly do not want it to happen again.It took me ages before I stoped inspecting my handkerchief every time it went near my nose. Jo.

Hi Jeanjeannie,

What an awful experience ! No wonder you were traumatised!

I have been in this forum for about 4 years, but rarely post.

I often read what has been posted and I know that you post regularly with very good advice and a sympathetic ear!

You're the one that needs tlc now!

I'm so sorry that this experience has shaken you, as I'm sure it would have done anyone.

A silly question ? Are you not able to take Apixaban or one of the others?

Hope you feel better soon, Take care and keep strong!

Thank you for your lovely reply.

The newer anticoagulants may be an option at some stage, but I'm wondering now whether the Warfarin had any input at all. I'm thinking perhaps the hot weather drying out my nasal passage membrane is a greater possibility.

Jean

I think we'll all benefit from the advice about the Vaseline , I'll certainly be doing it !

Take care and keep safe.

Hi Jean, so sorry to read of your woes. Take your time and recover and perhaps take RosyG’S suggestion and tune in if you can.

Would you consider perhaps changing to one of the DOACs? I wonder if the modern ones seem to have a better record on things like nose bleeds?

Lots of cyber hugs xxx

Thank you CD.

I feel that I was traumatised by the event and will be glad when it's just a distant memory.

No, I'm not keen to start taking the DOAC's, too new and the effects of taking long term not known yet. It's a choice we all have to make and as I now have my own Coagucheck machine I'll be happy to test more often and keep a closer eye on my INR. Will also be moisturising the inside of my nose when we have periods of hot weather. A nurse at my surgery who was an army paramedic out in Afghanistan said the soldiers there had nosebleeds because the heat dried out their nasal membranes and he used to advise them to put Vaseline in their noses and it helped prevent them. Someone else in answer to my post here has said she was advised to use Vaseline too.

Jean

That makes sense Jean - there are Nasal gel moisturising sprays you can get which are kinder to the nasal passages.

The only times I’ve ever had nose bleeds was in Colorado - high altitudes - very hot dry air.

Hope you will manage to tune in to this evenings zoom meeting. Didn’t fully realise just how unpleasant the whole experience had been for you, hope the blood tests are OK......

It totally traumatised me. To sit and weep - that's not me at all!

I've sent an email asking both you and Rosy if you can send me the link with advice and the video on using Zoom. I don't have a microphone or camera on my PC and am now wondering if I should wait until I have that before joining the meetings. Though I guess I could still just watch or use my mobile phone. Will decide later today (probably do it all last minute - as is the story of my life).

Jean

Jean - if you want a practice on your phone beforehand I can zoom you to talk you through what to do. It’s so much easier than you think. Just download the Zoom app that’s all you need.

Thank you CD. I need to get a camera and microphone for my PC, which I will as soon as I can, may order online. Could use my phone, but I'm slightly afraid it may use up a lot of memory. What do you think?

Jean

Zoom doesn’t use much memory but it can depend on your phone. If it’s a smart phone relatively recent It’ll be fine.

I managed to get on and just watch the talk.

My goodness, what an awful experience for you! I can only begin to imagine how frightening it must have been. I hope you continue to recover well.

Cally

Thank you for your kind concern Cally.

Yes, I was totally traumatised by what happened and will be glad when it's all a distant memory.

Jean

What a drama Jean. Sorry to hear about this. I hope you are feeling a lot better now. I have never had a nosebleed in my life (touch wood) but my husband and one of my daughters get them quite often - of course they aren't on anticoagulants.

As horrid as this experience was for you, remember that a disabling stroke would be worse. Hopefully you'll be back on track soon and you'll never have to go through this again. xx

Thank you Kaz.

I really pray that I never have to go through that again. It truly was one of the worst moments of my life and I felt traumatised for days afterwards.

I've had nosebleeds from childhood, but always from my right nostril and nowhere near as heavy . This was from the left and bled from a higher level. Until yesterday (9 days after the event) I was still bringing up small amounts of old blood.

Will be glad when it's all just a distant memory.

Jean

Sorry to hear about this Jean. Sounds like your INR reading may have been too high. I wondered if it is more accurate if you have the INR test done at the doctor’s surgery? A friend who takes warfarin (after a bypass) tells me that he has had some nosebleeds caused by it. At any rate, I am glad that you are now better. This article provides quite a bit of information on nosebleeds and anticoagulants, and seems reassuring:

clotcare.com/warfarin_nose_...

Thank you for that information Sam. My nose was bleeding from high up, so pinching the nostrils had no effect whatsoever, it just made it collect in my throat and then I had to keep spitting blood out, along with huge blood clots. My INR had been 3.3 a few days earlier and I had started reducing my Warfarin, but in the past it was once something like 6.3 and I had no problems then.

It's all a mystery.

Jean

Oh Jean, I have been following you and your posts, more or less since I joined this Forum. so I am so sorry to hear that. What an awful experience. Its good you are having a full blood test and I hope you get lots of support from your GP surgery.

Sounds like you are slowly recovering. Take care.

Thank you. Yes the further time takes me away from the event the happier I feel. I'm telling myself that thick scar tissue will form in my nose and completely block where the bleed was - that thought keeps me happy.

Jean

Oh Jean, sorry you had to go through that, it will take time to feel you can trust Warfarin again. I changed to Apixaban from Warfarin about 4 years ago because I was suffering with lots of nose bleeds and could not get in range 80% of the time. Since I have been on Apixaban I can count on 1 hand how many times I have had a nose bleed, much better for me. You take care.. Pam

jeanjeannie50
jeanjeannie50
in reply to Pita

That's interesting to hear of your changing to Apixaban, Pita. I think that would be the DOAC of choice for me should I ever decide to change. I've been on Warfarin for a long time, since the time that was the only anticoagulant. Time will tell.

Jean

I’m so, so sorry to hear you have had such an awful time. It was horrific to read so can’t imagine how frightening it must have felt.

I’m glad you’re starting to feel better, best wishes to you 💐

Thank you for your kind words, it really helps to know that people care.

Jean

What a frightening experience Jean, the balloon thing sounds horrible but at least it stopped the bleeding. Mike had a similar thing once and it was awful to see how much blood can pour out from a nosebleed, we went to A&E in the end to get help.

I hope your INR result is in limits and you get good support from the GP surgery, the practice nurse sounds very clued up.

Take it easy while your body recovers.

Best wishes, Jackie xx

jeanjeannie50
jeanjeannie50
in reply to Jay10

Thank you Jackie. I think the trouble with my bleed was it was high in my nose, so pinching the nostrils together which will usually stop the bleed did nothing. The bleed was under the bony ridge of my nose.

I met a young neighbour down the town this morning with her two young children and hearing her ailments made me think how lucky I was, she has to take morphine daily to control body pain. She can only be about 35 and doctors have given up trying to find out what's wrong with her. They think she has an auto-immune problem.

Jean

Life's unwelcome twists and turns, eh, Jean? How awful and worrying for you (and painful!).

.

The Road Goes Ever On

.

The Road goes ever on and on

Down from the door where it began.

Now far ahead the Road has gone,

And I must follow, if I can,

Pursuing it with eager feet,

Until it joins some larger way

Where many paths and errands meet.

And whither then? I cannot say.

.

J R R Tolkien

.

Steve

wilsond
wilsond
in reply to Ppiman

Like that piece...x

Ppiman
Ppiman
in reply to wilsond

It is simple yet profound at one and the same time. I have a soft spot for poetry (and for Tolkien)!

Steve

Love that poem Steve. I must look up some more of Tolkien's work.

Yes, I must get myself down that road and see what lies ahead.

Jean

A beautiful response, Jean. Get well soon!

Wow after that I think I would definitely look at changing to a DOAC, I have no experience but Apixaban seems to be well favoured on this Forum. On the Zoom meeting 5pm today I am hoping for some more info on stroke risk without ACs from the question I sent in. Hope all goes well.

Thank you.

I hope to join the meeting too. What equipment do you use to connect to it?

Jean

Mac desktop/register on Zoom (if not already) and use Rosy's emailed link - that's the extent of my IT knowledge!

Thank you that's exactly what I did.

Jean

BobD
BobDVolunteer

So sorry to read your drama Jean. I know how worrying a nose bleed can be and yours was in spades for sure. I do think it is important not to blame anticoalgulation for the bleed though. As we all know they do not thin blood in any way so whilst they may slow down the clotting process the actual bleed is caused by a failure of a blood vessel maybe helped by high blood pressure or a violent sneeze, bending down etc. Some people are more prone to nose bleeds than other of course. Interestingly the only times I have had nose bleeds were when in hospital when I warned them that aspirin and clopidogrel would turn my sheets red and when I had my nose smashed by a moron with a cricket bat when I was eleven so what do I know?

I agree that for you a top line of 2.5 would be wise but right now concentrate on resting and getting back to normal. Shame I can't drive over with some chicken soup. lol

jeanjeannie50
jeanjeannie50
in reply to BobD

Ooh chicken soup, yes that would make me feel better. Must put a chicken on my shopping list, very nearly bought one yesterday - now thinking why didn't I.

You're right I shouldn't put all the blame on Warfarin, because in the past my INR went to something like 6.3 with no problems. I think the heat we had drying out my nasal membrane and bending in the garden all probably contributed more. It's Vaseline up my nose from now on, trouble is how to get it there without making my nose bleed again, hmm perhaps not a good idea. I was given some Naseptrin cream at the hospital, but it made my nose itch. I was just handed a tube from a young consultant, which I found to be quite unusual.

Thank you for your concern.

Jean

Just messaged you Jean x

Ok, will have a look. Thank you.

Oh you poor thing Jean! Im so sorry to read this experience and not surprised you cried..sounds gruesome indeed.

I hope that you are recovering a bit now.Im sure I would also be unsettled about anticoagulants but I dread stroke so much (the family curse) id probably carry on but of course I havent had your horrible bleed.

Thinking of you xxx

Thank you for your kind concern.

Yes, it's never really bothered me taking anticoagulants before now. Thinking about it though, it was more likely to be the hot weather drying out my nasal membrane and also bending down in the garden dead heading flowers. Honestly, what can I do, I hate this getting older!!

Jean

I have a spray called mometasone.furoate..its excellent ,reduces inflammation in the nasal linings,and shrinks polyps.

Might help? Worth asking about...

Get well soon Jean xx

Interesting, thank you for letting me know. x

I have been on 3 different anti-coags, rivroxoban, Apixaban and now edoxoban. All caused daily nosebleeds, on edoxoban they even woke me in the night and I had to cover my pillow with a hand towel. I was tempted to stop taking them but when I suggested it on this site was told about the stroke risk. I seem to have solved this problem by cutting off a quarter each day and taking the remaining three quarters, not had a bleed since...

Oh you poor thing, lets hope reducing your dose will last and be the answer. How long have you been bleed free?

Jean

That sounds horrendous. Hope the doc's estimate for recovery is on the pessimistic side. Look after yourself and take it easy. Do you notice that scratches and small cuts normally take ages to stop bleeding?

Thank you for your good wishes.

No, I've not noticed that scratches etc take longer to stop bleeding. I have noticed that I don't heal as quickly as I used. To be honest I'm feeling so much better today, which is probably the result of me being out and about going to the docs surgery. Bumped into a few friends I hadn't seen for ages which gave me a boost. Think I've been stuck at home too long with this virus nonsense.

Jean

So glad you are feeling better. I find I don't heal as well since going on Apixaban. Scratches bleed longer too. I'm also convinced that it is making my hip and knee pain a lot worse. I know I need a hip replacement-the xrays show no cartilage at all. A few weeks ago I banged my head on the corner of my bedside table. I had a few mild dizzy spells and decided to lower the dose of Apixaban as a precaution. After a few days I noticed my hip and knee pain were reduced considerably. I went back to the normal dose. Pain came back. I tried it again -same result. It really is a dilemma. Do I take something that is helping to make my daily existence miserable and dependant on painkillers till I can get the op or risk a stroke that might never happen anyway? I can't take Pradaxa - digestive problems -and I don't see why the other "bans" would be much different- not sure Edoxaban is available here anyway. At the moment I am just taking 2.5 mg morning and evening and a nattokinase at lunch and crossing my fingers!

It's so difficult to know what to do re taking anticoagulants isn't it? Each pill on it's own has side effects, but what happens when we take several other pills that have side effects too. What does those combined together do I wonder!

It does not help if one is naturally suspicious or cynical. Mollybear posted recently that his new cardiologist did not trust CHADS2 VASC and thought it was skewed so as to get more people on NOACs. The fact that it replaced the less stringent CHADS just as the NOACs were coming on the market has always niggled me. The point just for being female is certainly not justified for women from the far east apparently.

Just wrote a long reply then lost it, nevermind I will keep it short this time. I had an almost identical experience in Jan,

I was so shocked i was shaking all over, the pain was horrendous , in hospital for four days , in great pain and misery the whole time. The ENT bunch were not that sympathetic when i said in this day and age there must be a less painful way of pwerforming the proceedure, called a Rhino Block. Like you I said never again.

Anyway as i returned to normal I decided to do some research, not a lot of info, the best I came up with was an American ENT Dr who said that most of the time Two squirts up the nose of this . was enough to stop the bleed, if given as soon as possible, it was an Ephedrine Spray, I have the name and will try and copy and post when i find it. He said after the spray, push a Tampax, or two up the nose , it is a combination of the shrinking if the veins in the nose and pressure which makes it stop.

Anyway i haven’t needed to try it but it made me feel better that I could at least try something rather than go through that awful procedure again. Do some research and see if you can come up with anything, I am sure they could zinc us out for a couple of minutes while they do it.

The Dr did say that my warfarin didn't have anything to do with it . My INR at the time was 2.4 practically spot on.

Take it easy and you have my full sympathy, I think most people think that it is a lot of fuss about a nose bleed, the nurse on the ward said it was the procedure that they all feared most and she had seen grown men cry with the pain.

So you have suffered the torture too! Did your nose and face swell and did you cry?I was given morphine and paracetamol for the pain and I have to admit I thought the paracetamol worked better. That's interesting about the spray and tampon. Is it Neosynephrine that I should buy? Did you get some?

Yes, I'm beginning to suspect that my Warfarin didn't play a big part either. The shock of having such a massive bleed doesn't help. I think that put my blood pressure up and so a vicious circle was formed.

How long did you have the thing up your nose for? Mine was barely two days. Oh I feel for you too, it's just the most horrible thing isn't it!!!

Jean

Yes very swollen , worst pain ever and yes I did cry. To begin with i was in shock, I felt more like beating up the Dr who did it. A nurse gave me morphine almost immediately , it didn’t appear to help.Next day having had no sleep and still in lots of pain definitely more teary. I was in hospital for four nights and left with a soft pack in my nose which very gradually disintegrated, took about two weeks. Rapidly improved when i could breath again, not helped by having a permanent cough, when I coughed the pain shot through my head again. The whole experience was horrendous .

Still not sure why they cant put you out for a couple of minutes when they do it.

i protested to the ward sister, Drs and my GP saying that I thought in this day and age they could come up with something less painful and shocking.

Perhaps we should form a pressure group for something to be done, ha ha.

Do you live in the West Country by any chance, seeing the palm tree in your photo. I am in Cornwall.

I do hope you are much better now and that it never happens to either if us again.

Yes, I live in South Devon, but I think that photo was taken in the Scilly Isles.

I do have a huge palm tree in my front garden though.

It would be far kinder to put us under sedation, but I guess we wouldn't be able to control the blood pouring out then.

Jean

Neosynephrine Drops or spray

I did post about this at the time, not sure how long things are kept .

So sorry to read of this horrible experience, Jean and wish you well in your recovery. Physicians hear the word ‘anticoagulant’ and home in on that but it may not necessarily have been the reason.

My bleeds were caused by household cleaning sprays - especially glass cleaner - wood smoke and dry nose, although the ENT man said Apixaban was the cause and I’d have to put up with them.

Look after yourself and rest. xx

Thank you Finvola. I think you're right and anticoagulants are sometimes unfairly blamed. With hindsight I think the long hot spell of weather we had was probably more of a cause for my bleed than anything. I must try to remember to use Vaseline inside my nose when it's hot. Trouble is doing that could cause it to bleed!

Thank you for your kind words.

Jean

Wow! What an ordeal! So sorry for what you went through. Have you tried any of the other drugs like xeralto, etc.?

Thank you for your response Adasian

I don't think there would be a lot of difference as they all do the same thing, which is prevent blood clotting. A few people have said they've had the same thing happen on the newer drugs.

Jean

All said in the above posts.

Just want to say that I hope you are feeling a bit better.

You help everyone so not surprised by the number of replies

Take care

Rod

jeanjeannie50
jeanjeannie50
in reply to 7164

Thank you for your kind words Rod.

Yes, I'm feeling so much better today.

Jean

So sorry to hear this Jean sounds like you went through a terrible ordeal. I can see that you have a lot of people reaching out to you and little wonder as you are a real help to others on this forum, me included. I hope you’re continuing to feel better. Take care Xx

Yes, I'm feeling so much better today and I think that may be the result of all the good wishes I've received.

Many thanks

Jean

Good Morning Jean,

I am so sorry to hear about your truly horrible ordeal. No wonder you cried, with all that pain and having to cope with loosing all that blood.

I am glad you are now safely back at home and I do hope you are beginning feel a little bit better now, and I am sure in time the trauma of it all will also begin to lessen.

Glad to hear you have a good GP practice and the support from that ex army paramedic must of being a real comfort.

Fingers crossed blood test result is all ok. Will be thinking of you.

Take care and rest as much as possible.

Best wishes,

Shirley x

jeanjeannie50
jeanjeannie50
in reply to Ochg

Thank you for your lovely response Shirley.

Yes, I'm feeling so much better today and the fear of my nose bleeding again is slowly fading.

Jean

Get well soon Jean, sorry to hear of your stressful situation it must have been awful... Take care , ♥️🙏

It was a total nightmare, which is why I said I'd rather shoot myself than go through that again. I could kick myself now for letting it bleed for so long at home. I've been told to call an ambulance now if I have a bleed lasting more than 20 minutes.

Thank you for your kind words.

Jean

I completely understand as I had exactly the same about 3 years ago. But in my case they plugged both nostrils although I was only bleeding from one. It gave me an awful sinus headache which nothing relieved. It was 4 days before they took them out. I was begging them and so nearly did it myself as I cried sitting on the bed during the night. Every nose bleed I have now, I worry if it is not going to stop. But I am NOT going back to hospital and have that experience again.

jeanjeannie50
jeanjeannie50
in reply to Barb1

I know just how you feel Barb. Trouble is if our noses won't stop bleeding we have no choice but to go to hospital (though there is the shooting ourselves option). I've been told I've to call an ambulance if mine bleeds like that again for more than 20 minutes. Its the thought of having that balloon thing up the nose again!!!!!! How you put up with having two nostrils blocked I'll never know. Did your face swell up like mine?

Jean

Barb1
Barb1
in reply to jeanjeannie50

Yes. I am going to buy the drops/spray that were recommended with some tampons!

jeanjeannie50
jeanjeannie50
in reply to Barb1

I will too. We'll have to make sure we don't answer the door wearing them up our noses. Or the men in white coats would be sent for. Lol.

😂

Oh Jean that sounds awful, hope your feeling better today, take it real easy. I think we all have a fear of a bleed when on AC’s.

Thank you. To be honest I'm feeling so much better today, just praying that it never happens again.

Jean

Oh Jean, I wondered where you were. What an absolute nightmare. Hearing about your experience literally made my toes curl and my stomach churn. I very rarely experience nose bleeds and when I do they are nothing like you experienced.

What a pity no one was able to have a chat with you about the whys and wherefores of your bleed. And I am not trying to dissuade you from any decision you make re anticoagulants, but my friend had a very serious nose bleed. Never taken warfarin in her life, and no history of nose bleeds either. She was sitting in a coffee shop and the management called an ambulance, they were so alarmed at the amount of blood. She had her nose packed and eventually recovered. That was about five years ago and she hasn't had one since.

I am hoping that this will be your experience. Take great care x

Thank you Irene.

I'm telling myself that, where I had the bleed, scar tissue will form and make a thick blockage so that it wont happen again. News of your friend not having another bleed gives me hope.

Jean

What a terrifying nightmare ... sorry ... keep us posted as to the outcome.

Jan

I will do Jan, thanks for your concern.

Must admit that I feel a lot better today, thank goodness.

Jean

Oh good ... your body must be very strong. I always think that l am very frail ... tall and thin ... but my body never fails me! I find it amazing what we can endure.

So sorry you had to go through that Jean, what an ordeal. Interesting to read about keeping the nasal passages moist. I’ve been using a dehumidifier when it’s humid and had a nosebleed a few days ago - very rare for me. Luckily it stopped. I’ll think twice about using that machine now.

Fingers crossed yours was a one off. Take care 💐

Thank you for your kind words Hilly.

Yes, certainly don't have that dehumidifier on. Who'd have guessed dryness in the nose membrane could cause a bleed. We certainly need to be aware of these things.

Jean

I hope you feel stronger soon. The pain and fear of your ordeal would have been shocking. Our noses are sensitive at any time, let alone with your balloon!Thanks for giving so much support to everyone, hopefully sharing with us will help you in your recovery. Take care, Di

Thank you Di, I'm certainly feeling better so maybe everyone's good wishes on here are working. The power of thought!!

Jean

I have been on Apixaban for years now - I bleed most weeks - but not for long. I did have a minor toe fungus problem - and, after trimming my toe-nails, my big toe bled every morning for a week when I scrubbed my nails. I have low blood pressure.

My brother has cancer - and was admitted to hospital the other week for a potential leg ulcer... when they swabbed him for the Covid test he had a nose bleed for an hour. He is now has a chest infection - and they have not been able to get him a Covid home test kit.

Are you recovering from the loss of blood?

jeanjeannie50
jeanjeannie50
in reply to S11m

Your poor brother, how cruel to have swabbed his nose so hard. Is he still in hospital? I had it done before being admitted to a ward and I wonder why they don't give us a mirror and tell us to do it ourselves.

I've felt so much better today, so yes I guess I'm recovering from the blood loss. Mind you for my blood test this morning they took 3 phials. Talk about adding insult to injury!

Jean

What an awful experience. My grandson suffers with nose bleeds which just come on for no apparent reason and sometimes they are a job to stop and he is not on any anticoagulants.

Take care and best wishes for a speedy recovery.

Yes like your grandson, I've had nose bleeds from childhood, but always from my right nostril. This extreme one was from my left and I really wouldn't wish that experience on anyone.

Thank you for your good wishes.

Jean

Jean, I feel so bad for you. You are a trooper and a wealth of information and help to all of us. I am on Eliquis 5 mg twice daily. My neighbor was just taken off warfarin and put on Eliquis. Perhaps they will let you try another anticoagulant. Thank you for sharing your frightening story. Stay well and I hope you feel stronger soon. Best wishes.

jeanjeannie50
jeanjeannie50
in reply to Rebma

Thank you for your good wishes and kind words Rebma.

At the moment I have no wish to change from Warfarin to one of the newer anticoagulants. I feel they haven't been around long enough to see what the long term effects are, if any.

Jean

Hey there matey. It will be interesting hearing what the specialist says on rosyG Epsom Af support group virtual meeting tonight about anticoagulation. Hope there may be a clue there for you. Stay safe x

I did join the group, but only to view. Unfortunately some friends rang about half way through and chatted for ages, so I missed most of the questions.

Jean

Oh my goodness how horrible for you!

My dad went through exactly the same thing, but he had tampons put up his nose!

Really hope you continue to get stronger and can relax and not worry. Take care, kind thoughts x

Oh my goodness tampons up the nose! Someone else on here has researched that this may be a good idea, so as to put pressure on the spot where the nose is bleeding. I'd better get some - just in case. It was so uncomfortable when they put the balloon dressing up my nose I do wonder if I'd have the nerve to push a tampon that far up. Mind you it may be preferable to the alternative!

Thank you for your kind words.

Jean

Dear Jean, I’ve just belatedly seen this, and wanted to add my hugest sympathy and love to the well-deserved outpouring here 😊 You are so kind to us all, whatever we’re facing, and we hate to see you in trouble.

Really really glad you’re feeling more yourself today, and hope that continues. But oh- what a horrendous trauma to go through 😭 I feel for you so much.

I know everyone is different, but it may be reassuring to know that my dad had the same happen, and he wasn’t on any meds at all (no anticoagulants). Like you the bleed was too high up for normal treatments to stem it. Foolishly I underestimated how bad it was and drove him to A&E myself with a big kitchen bowl on his lap... By the time we got there, the whole passenger seat area looked like a slasher murder had been committed! It’s a family joke in retrospect, but horrendous at the time. Even in A&E they couldn’t stop the flow and at one point he had to be resuscitated. Thankfully he was fine, but the nasal treatment was the most painful thing he had ever experienced -and he had been bombed in WW2. So I feel your pain 😢

The good news is that though we never knew what caused it, it never happened again. So hoping and praying that it’s the same for you - and that your blood results are good news too. Keep us posted, wont you? & take very good care of yourself ❤️ J x

What a lovely response Jane, thank you for your kind words.

Your poor dad, I feel sorry for anyone who has had a nose bleed that wont stop. Looking at the responses here it looks like it's not that rare as we grow older. I've been told that if it bleeds like that again, then after 20 minutes I'm to dial 999 and get an ambulance. To be honest I think I'd feel a bit guilty doing that, would never have thought a nose bleed was an emergency! With hindsight, now I know it can be if the blood is really gushing out.

I'm very much hoping that my event will be a one off occurrence and again, like you, a few people have said for them it was, so it's given me hope.

Jean x

Ianc2
Ianc2
in reply to jeanjeannie50

look on the bright side. If you had been in the shower it could have turned into a blood bath.

jeanjeannie50
jeanjeannie50
in reply to Ianc2

Oi you, no jokes at my expense! 😁

Ianc2
Ianc2
in reply to jeanjeannie50

Quite right. I should really keep my nose out of it.

jeanjeannie50
jeanjeannie50
in reply to Ianc2

Now, now!!!

OMG Jean. I'm so sorry to hear this. I hope you're done with nosebleeds for good! Oddly enough, I suffered almost weekly nose bleeds before I went on apixaban and haven't had a single one since. Go figure.

Thank you for your kind words.

What were you taking before you went on Apixaban?

I was on warfarin for a short time -- 8 months or so -- before apixaban. No nosebleeds on it either. I worried about the nosebleeds when I was prescribed anticoagulant, but none in the 5 years since. Hope you're feeling better Jean.

Oh you poor thing, I would have been absolutely terrified. Sounds like you had a nightmare. I think you are a very strong and incredibly brave lady.

I really hope that was a one off. Make it he most of your lovely location it sounds idyllic

Take care Deb

I'd already had a few difficult to stop nosebleeds over the last month or so, before the latest that put me in hospital. I'm in total dread of it happening again! It certainly was a terrifying experience!

Thank you for your supportive and kind comments.

Jean

Arh, Jean, how are you feeling now.? You are so supportive to everyone on here and certainly given me good advice when I was first diagnosed with Afib (which thankfully has caused me minimal problems since keeping off the caffeine). I was sad to read your post. X

Hi Julia

Thank you for your kind words. I'm pleased to hear you're feeling so much better, isn't it odd how something fairly innocent, like caffeine, can upset our hearts. I find I'm better avoiding anything that contains artificial additives

I think I'm ok thanks. Had blood tests taken last Wednesday and the results are still not back. Usually they're back in 3 days. Have been looking online at my Medical records and nothing there. Will ring my surgery tomorrow, in case they've been missed somehow. Meanwhile I'm terrified of bending down in case it sets my nose off bleeding again!

I'm still lacking energy and went to see my AF nurse on Monday, had an ECG and I'm in constant flutter. So she said to raise my Flecainide dose in the hope it will put me back into sinus rhythm, all it's done so far is make me more aware of my heart beating oddly. I have to call her next Monday and say how I am.

Jean x

My goodness, what a dreadful experience. I have had numerous nosebleeds, some of which have lasted for up to an hour before I could get them to stop, and I thought they were bad enough - but nothing like your experience. I too take Warfarin and so am really hoping I don’t have to experience what you did. I send you all good wishes and hope you never have a repeat of this.

jeanjeannie50
jeanjeannie50
in reply to Aruam

Thank you for your good wishes.

I guess mine must have lasted for 3-4 hours. It was one of the most awful experiences in my life and I have to admit that I'm scared it will happen again. I was told to ring an ambulance if a severe nosebleed goes on for more than 20 minutes.

This last one was very different from my usual nosebleeds and absolutely gushed out.

Jean

Mine have not been so severe, but as soon as I start one I can feel my blood pressure rising - that makes it more frightening, doesn’t it? I was told cauterisation would not necessarily be a solution so I just have to live with it. I now use Vaseline in my nostrils to try to prevent the skin over the surface capillary from cracking - it works well until I have a runny cold! I also have learned how to turn a sneeze into a cough as sneezing often precipitated a bleed , I found.

Kind regards.

Yes, Vaseline was suggested to me too, but by my a nurse at my doctors surgery. I was given a tube of Naseptin at the hospital, but is has nasty side effects listed.

My bleed came from really high in my nose and I'd be too scared to put Vaseline up there in case it started a bleed - can't win! I think we have to be careful in warm weather.

I'm hoping to keep my INR a little lower now than it was, say 2.5 or a little under. You know if I plucked any hairs the area would bleed, that had only started a few weeks before the major bleed. So be aware.

Jean

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