Anyone else awake occasionally with b... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Anyone else awake occasionally with blood in the mouth?

For some time now I have occasionally awoken with blood in my mouth which I assumed was due to the Sjogrens and my having a dry mouth. Drs and consultants are aware of this problem and have issued various medications to keep my mouth moist.

My concern is that despite my being very red on my chest area nobody has thought of carrying out a doppler scan to see if anything more sinister is going on.

I am a snorer due to being a mouth breather but I am Aps positive and do wonder about clots as this blood is only occasionally happening. Dr D'Cruz was concerned about the reddening on my chest but simply wrote to my Gp to get me referred to a sleep clinic. I have had a chest xray carried out but not a doppler scan.

I am beginning to feel like the bride of Dracular in the mornings.........of cause it could be just a burst blood vessel that is the problem but I do feel it needs investigating.

Has anyone else experienced this ? I am on clopidogrel for my Aps.

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When you say you have blood in the mouth, do you actually see the blood or just taste it?

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I understand about the taste, it is metallic, and when you wipe saliva from your tongue it is slightly bloody. I find it annoying and think it is just me, obviously not. Mine comes and goes. I think is it my gums. my throat or just my head it stops eventually then comes back for a period. I suppose I put it down to the aspirin thinking my blood.????

Would be so good to get definite answers to these weird things at times......

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I am not just getting a metallic taste although I have had that, this is blood in my mouth and on my pillow on awaking.

True it would be nice to get answer's for these weird happenings.....it's the joy of having auto-immune issues I suppose.

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Yes I have awoken with it in my mouth and on my pillow.

A few nights ago I spotted a bit of blood in my mouth but on Tuesday I awoke with my mouth full of it. Drs and consultants are aware of it but I am surprised nobody has suggested a doppler scan.

Maybe it's just caused by my snoring......apparently i'm quite good at it.

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I quite often wake up to dried blood on my pillow & around my mouth. I've never worried about it, as like you have sjogrens & APS. Just presumed, my gums have got incredibly dry and cracked and although no sliver, whilst asleep I still dribble, mixed with the blood it always looks worse/more than it is.

Not sure what you mean about reddening chest?

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Hi Holly,

This is more than just a little blood mixed with saliva.........it is quite a bit of blood that looks as if coming from the throat.

I have had what your talking about many times and it hasn't bothered me to much but the other morning the bleeding was quite heavy.

The reddening of my chest is just below my neck area and spreads across my chest.........Dr D'Cruz at Guys was very vigilant and commented on it.

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Blood in the mouth can be from the nose, gums or teeth or even tongue. As has been said will look worse with the saliva. I often blow clots down from my nose too.

A metallic taste in the mouth is altogether something different.

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I am aware of that Lynn but this is a bit more than just spots of blood.

What I experienced was quite alarming and coming from the back of the tongue or the throat. I havn't had blood from my nose but have had it in my ears on the odd occasion !

As soon as I feel well enough I shall pop along to the sleep clinic to see if they can suggest anything I already have saliva sprays and lozenges to put in my mouth at night to keep it moist.

The metallic thing is something different and pleased to say I have not experienced it for a while. It's all to do with the joys of auto-immune disorders and the curse of it all.

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If this is a new or worsening symptom, do go back to your GP and or consultant and if feeling that you are not getting anywhere take somebody with you as back up. MaryF

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Hello Mary,

Hope you had a wonderful time at the festival. It had been something that has been happening for some time. I took photo's of what was happening to me along to appointments ( quite gruesome ) some of them for the consultant to view. It was simply passed off as part of my sjogrens ! Even Professor Hughes seemed to think it to be down to my sjogrens..........who am I to question ?

On Tuesday I was concerned because the amount of blood more than normal........I were literally spitting it out, in hind site I should have taken photo's. I am also uncomfortable in my chest with dull pain and it's like a tightness. As soon as this awful heat has gone I shall go back to the sleep clinic at the moment I am unable to do anything because I seriously can not tolerate the heat.

I just wondered if others with sjogrens suffered the same.

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A curse. says it all.......... At least people are communicating and finding out new links and reasons as to why it is happening. Would be nice to roll new ideas a bit faster to try and get people through some terrible situations a bit quicker. Good advise - please bring it on.

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Hi Linda,

Had I not have found this site and communicated with other's I would not have been diagnosed..........as BT tell us in the adds it is GOOD TO TALK.

The good new's is there is a lot of research going on in regard to auto-immune conditions........who know's one day they might ' just might ' find an answer to our misery. Fingers crossed chick

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I used to have blood on my pillow in the morning regularly, especially if I'd slept on my side, more lately due to pain I've had to sleep on my back, so my pillow has stayed clean for a change!

I have always put it down to being on blood thinners and having Ehlers Danlos Syndrome. With EDS our blood vessels are very weak and so rupture easily, I always have lots of blood when I clean my teeth for the same reasons, even though my gums are perfectly healthy.

I definitely think you should have it looked into a bit further, plus Prof DCruz has flagged up your red chest so it can't hurt to get both things checked out. I'm seeing Prof DCruz in a couple of weeks time and I'm praying that he will finally link my clotting and rheumatological issues together.

Claire 😀

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Hi Clare,

I cant say I have heard of Ehlers Danlos Syndrome but I shall google it out of interest. I also have the bleeding gum's when cleaning teeth and have purchased endless products to help with this.

I now sleep with a towel laid across the pillow to protect it from staining.

That is what I thought might be happening.......burst blood vessels.

Do you have the reddening across your chest ? I am also getting thread veins in that area so cant help but wonder if more is going on.

Dr D'Cruz did flag up the redness of my chest area but simply suggested to my Gp I were referred to the sleep clinic.

I hope your appointment goes well and you get the answer's your looking for. He should link the rheumy issues and clotting together.

Seem's I am not a blue tit but a red one :-) only joking. Tweet tweet

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Hi! If you snore, you need a sleep study as soon as possible. Untreated sleep apnea can cause loads of heart problems and other problems also. It may need to be treated.

Nancy in West Virginia

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Hi Nancy,

I have had two sleep studies the first being in Oxford for an overnight study,

to my surprise they told me everything was normal.

The second one was at my local hospital where I were given a gadget to were at home. This showed I had ' very slight ' apnea so I was issued with a machine with a humidifier attachment to help with my dry mouth.

I tolerated the machine well but I had to have a slight adjustment made.

After they adjusted it I found the tube to the mask filled with water and I would awake with water on my face plus the windows were running with condensation. I took the machine back to the clinic where they told me seeing as my apnea was so mild I would probably be better off with out it.

I could do with that machine right now.......it was great for cooling me down.

I would take the mask off and blow the cool air over me. :-)

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How long ago did the apnea machine get taken away from you. If a year or more, you probably need new sleep study. I can’t believe you were issued a cpap machine and then they took it away. They wouldn’t have given you a cpap machine if you didn’t meet guidelines requiring one. I got that water condensation problem too. I got fed up with it so I took humidifier off. I do have a dry mouth too but I couldn’t stand getting rained on at night.

Big question: DID CPAP make you feel better? How long did you use it. Most people report it makes them feel so much better. If you used it long enough (3-6 months) to know you feel better, you need to be on it. Plus the concern that your sleep study results indicated you need it according to Standards of Care.

I have been wearing a cpap/Bipap with oxygen for 22 years now. I don’t like it but I have to wear it so I do.

Nancy in West Virginia

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I used the cpap machine for about five months but if honest I didn't wake up refreshed or feel any better using it. Without the humidifier attachment it would make my nose and mouth ' very ' dry to the point of choking.

I was worried about the water in the pipe not being sterile and getting an infection on my lungs. It was awful waking up with condensation all over the windows.......what a great start to the day having to wipe them down.

It was left that I could go back to the walk in apnea clinic if need be.

As soon as this wretched weather breaks I shall pop into the clinic and have a word with them........I simply can not tolerate the heat I am sat here with fan on and still I am melting, I am very heat intolerant.

I cant say wearing the mask bothered me but I did find the mask warm to wear on hot nights.........plus it played havoc with my hair.

It would be a help if I could get to see one of the consultants or have an overnight study as an inpatient. Maybe a word with my Gp might help so that she can contact the clinic.

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