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POLL Nosebleeds - do you get them? (Revised Poll)

Discussion in 'General Symptoms' started by Allyson, May 14, 2013.

?

DO you get nosebleeds ?

  1. Yes, large ones frequently

    1 vote(s)
    5.6%
  2. Yes, small (miinor) ones frequently

    2 vote(s)
    11.1%
  3. No large ones - only frequent small ones

    0 vote(s)
    0.0%
  4. Yes large ones but oly occasionally

    1 vote(s)
    5.6%
  5. Yes small ones but only occsasionally

    3 vote(s)
    16.7%
  6. No - I never get nosebleeds

    13 vote(s)
    72.2%
Multiple votes are allowed.
  1. Allyson

    Allyson Senior Member

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    HI all

    I have had frequennt nosebleeds for may years

    usually small but constant - almos t daily

    and occasionally large ones

    It is the kind of symptom i have ignored - thinking...was it due to insulation ithe house?,,, chemical exposure,,, etc

    but i wonder ifa nyone else get them please

    Many thanks in advance for all replies

    Ally
  2. alex3619

    alex3619 Senior Member

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    I used to get nosebleeds semi often. Now its occasionally.
    Allyson likes this.
  3. Allyson

    Allyson Senior Member

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    thanks Alex - so did you vot e no ?

    maybe I should add an option for occasionally??

    are you OK - did you break your leg? Hope all is good...


    cheers
  4. Allyson

    Allyson Senior Member

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    hi all,

    i have re- done this poll to include occasional nosebleeds ( thanks Alex for the reminder)

    So please fill out both polls - one for frequent one for occasional as i cannot put 2 questions in this poll for some reason and cannot delete the other.

    sorry for the inconvenience incurrred

    Many thanks in advance for all replies.

    Aly
  5. alex3619

    alex3619 Senior Member

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    No, I voted yes, based on my old issues ... it depends on what you mean by nosebleeds too, the lining of my nose even now is easily damaged and I bleed, but its not spontaneous. What I used to get was heavy nosebleeds, now I probably dont even notice most of them ... too mild. I dont think thats about frequency, I think its about severity.

    I am almost recovered enough for me to walk again, but full recovery might take a year.
    Allyson and Ritto like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    Im not going to vote as I do get them but only occassionally and I dont think more then a normal person does.

    That being said.. when I was a young child (way before I got mono or ME), I had terrible nose bleeds to the point in which a doctor told my mum I should have surgery to stop these. I cant figure out how this goes but it was advised that I get my tonsils out to stop the nose bleeds so that was arranged and done (almost killed me as I wouldnt stop bleeding after the surgery and had to have a blood transfusion at that point). Interesting thing is.. after my tonsils were removed.. I did get far less nose bleeds and only remember a few growing up. (wonder thou if I caught something during that blood transfusion).

    My daughter who could be diagnosed with EDS and who tires easily (but at this point isnt CFS).. she has terrible nose bleeds (to the point where she will be left feeling faint due to blood loss..she was once found lying on a road in a pool of blood due to a nose bleed)... she also nearly died from a nose bleed at 6weeks old (stopped breathing as she choked on the blood cause she was laying on her back at the time and she then needed to be resusitated.. her heart stopped due to it). It turned out (we didnt find this out till she was about 18 years old) that she has no covering over the vessels inside of her nose and has been told she should have a skin graft done inside of her nose. (Ive no idea if that is a defect to do with EDS or not).

    Her needing a skin graft, that got missed all that time even thou it almost killed her all cause when she bleed bad when a baby, doctors wouldnt believe she'd sprayed our car badly (it even sprayed the sunshades of the car) with blood when I sat her up and put her her stopping breathing and heart stopping to a near miss cot death saying that some babes bleed "a bit" with that (they wouldnt come out and check out our blood covered car thou a week later on her being released from hospital, when they looked at blood test results, they said it appeared she should of had a blood transfusion when she'd been admitted by ambulance)... They never looked up her nose which they said was too tiny to look up and said "babies dont bleed like you describe from the nose so its near miss cot death). We've had so many bad doctor experiences of major things being missed.
    Allyson likes this.
  7. Allyson

    Allyson Senior Member

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    OMG Tania - so sorry to hear that - she may need a cardiac ultrasound now then too- they are doing that on everyone with all kinds of EDS to rule out arterial defects - my geneticist booked me in even before i was diagnosed.

    It is now thought all forms of EDS are potentially fatal due to random arterial defects - i think is the rationale.

    Easy bleeding, frequent bruising and slow wound healing are common symptoms of EDS [ due to defects in the arteries and connective tissue around them] - i have that and peteichiae - another symtom - did you r your daughter ever faint - apart form that terrble episde?-

    thanks for the intereting post
    Ally
  8. beaker

    beaker CFS/ME 1986

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    Aspirin is a trigger -- has been since long beforeME/CFS. As in major bleeding and don't take aspirin ever now.
    Had the veins cauterized once. Now chronic rhinitis ( me/cfs related) , allergies( always had) can cause issue.
    I use saline spray. Sometimes I use the cort spray when allergies are very bad and that usu. triggers it eventually.
    Also, in the winter, I use a humidifier to help prevent.
    Allyson likes this.
  9. SickOfSickness

    SickOfSickness Senior Member

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    For about 10 years, I got them 1-4 times a week. I got sick at a young age, so I don't remember if the nosebleeds started soon after my onset. Maybe not for the first few years.

    Now it's around once a month. Occasionally I get a week with a few.
    Allyson likes this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Allyson

    Would you like to delete the other poll? Let me know if you would like to.

    Sushi
    Allyson likes this.
  11. Allyson

    Allyson Senior Member

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    thanks Sick; interestong - do you have easy bruising and bleeding elsewhere too by any chance ? or petechiaie?

    Ally
  12. Allyson

    Allyson Senior Member

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    Hi thanks for that Sushi - tha t is kind of you

    yes that was my plan for today - i have contacted someone to delete it for me though til i work out how.. that was befor i read your note

    so anyone reading please do not fill out this one and wait for the new one - sorry

    thanks again i wil let you know if i need help

    i will combine the 2 questions into yes, no for frequent and for occasional somehow.

    best,
    ALly
  13. Allyson

    Allyson Senior Member

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    thanks Alex, glad to hear you will mend ...eventually !

    Could i ask how you did it?

    Sushi has kindly re- jigged the poll to cater for more kinds of answers so would you - and anyone else reading who voted - mind voting again here.

    all previous cast votes were lost in translation

    (Tanya the poll is not about normal or excessive - if you get nosebleeds at all you can answer - we do t know what is "normal" amount of nosebleeds.)

    thanks in advacne for all replies .... much appreciated.
  14. alex3619

    alex3619 Senior Member

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    The first thing I did for nosebleeds was stop using bleached facial tissues on my nose. The second was, if I was going to be around for example dust mites, I used vicks vaporub on the inside of my nose, which acts as a barrier to prevent an allergic reaction. Mostly though it was that I improved on various protocols over the years, especially pacing. This is about both looking after the nose, and improving health generally. Its also very likely many of us have nasal infections, frequently not diagnosed. They sometimes respond to antibiotics.
    Allyson likes this.
  15. Allyson

    Allyson Senior Member

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    Thanks Alex,

    what piqued my interest was that the geneticist i saw for EDS diagnosis aked about them,

    I have had them for many years - small ones sometimes almost daily - but never made any connection with the easy bruising and bleeding and slow wound healing i have.

    i have started on chondriatin sulphate and chasing up glycosaminoglycols at his suggestion to strengthen CT and see if that helps any.

    Why i asked how you broke your leg - big sympathy ouch BTW - i recenlty read poor proprioception due to EDS can lead to clumsiness - somehtin i seem to have develped oto over the years - it started first on my left side - the same side my varicose veins are now on and what has always been a stiffer side in muscular /jint sense..

    thanks again and take care now maaate!

    cheers,

    Ally
  16. alex3619

    alex3619 Senior Member

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    Well, EDS might indeed lead to clumsiness, but brain fog plus poor balance in ME can do it too. Some I know with ME kick their toes on furniture all the time ... even though it has not been moved. I do it sometimes. I definitely have poor balance, but I also don't react as fast or as appropriately as I should. I also don't see things, particularly if I am distracted. Its a little like a form of cognitive blindness. The image is there in my mind, but I don't react to it. It might as well not exist.

    The irony is that I think my leg broke because I partly regained my balance, became more centred, but did not stop falling, so that when I fell it was straight down from a near standing position - not to the side or back.

    However its also the case that we simply don't know what percentage of ME patients have EDS. New diagnostic procedures for old and new forms of EDS seem to come along all the time.
    NK17 and Allyson like this.
  17. Allyson

    Allyson Senior Member

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    spot on thanks ALex - yes that i show i feel - -

    kickinnfg furntiture was th first thing i noted 0 - let side most at first.

    i also knock over a lot of glasses of water in a day - I use plastic bottles now.

    I do not have that cognitive blindness touch wood - but i recall my specialist said he had several patients whose vision blacked out when they reached up - eg to hang clothes out on the line - and it returend when they put their arms down again.

    (ow! ... did they check your bone density then to rule out spontaneous fracture CAUSING the fall?...guessing here ...)

    yes i think they are again revising the EDS diagnositic critereia ... bit of a chicken and egg .. the more people get diagnosed the more data they have to classify them... all their "invisible symptoms" have been a bit overlooked as they have in ME/cfs.

    Sushi tells me she has just has posted details today of a new EDS research centre inn Baltimore - must go and read it now.


    cheers
  18. Allyson

    Allyson Senior Member

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    @beak

    beaker and sick - could you re- cast your votwes please aas they got wiped off in transition

    thanks inndeed

    Ally
  19. WillowJ

    WillowJ Senior Member

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    I've had frequent nosebleeds at times which would be minor except they wouldn't stop (for 20 minutes, for example).
    Allyson likes this.
  20. beaker

    beaker CFS/ME 1986

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    done
    Allyson likes this.

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