Severe nose bleeds anyone?

[JoanDublin]

Hi again

Does anyone suffer from nose bleeds which came on only after the onset of M.E.?

Young lad gets about five or so a day and they are pretty nasty. He was seen by a specialist last April who cauterized a vessel in his left nostril but within an hour or two the bleeding started again and since then its actually got worse. The other nostril has also recently joined in the party.

I was just wondering if this is something related to ME or totally separate?

I have an appointment on the 28th August with a specialist so if anyone has any information indicating that it could be ME related, I would much appreciate it.

Cheers

 

[Valentijn]

I don't think it's a typical ME problem.

 

[justy]

Hi Joan - strangely I also had these at the beginning of my severe relapse back into M.E 6 years ago. No one could explain why, but they were real gushers, which lasted for longer than I was comfortable with. I never had them before this time. I had them regularly for a couple of years and then they just stopped as suddenly as they had arrived.

Sorry to not be of more help. Hopefully they will pass, as mine did.

 

[justy]

A quick google search brings up quite a lot of anecdotes about people with M.E suffering from nose bleeds. Dr Myhill thought mine could be a chronic staph infection as I was also getting styes. As I remember now she gave me some antibiotic cream which did stop the styes and may have helped the nosebleeds too.

 

[JoanDublin]

A quick google search brings up quite a lot of anecdotes about people with M.E suffering from nose bleeds. Dr Myhill thought mine could be a chronic staph infection as I was also getting styes. As I remember now she gave me some antibiotic cream which did stop the styes and may have helped the nosebleeds too.

Thanks Justy
Yeah I can only see some passing references here and there myself but nothing to really link it. I suppose anything is possible with this illness. You just know you will face a battle at the hospital when you try and suggest there may be some underlying cause etc etc! The cauterisation didn't work last year and he absolutely refuses to have it done again as it was so painful. I don't blame him to be honest.

Like you I am hoping they will just go away by themselves but I couldn't ignore them because of the increasing severity and frequency of them over the last couple of months. He says he constantly feels a trickle of blood down his throat and it must be very uncomfortable and nauseating for him.

His GP is tying this referral in with a hearing test as he has lost some hearing since the onset of the tinnitus in January of this year. The tinnitus seems to have gotten worse too. Certain voice pitches set it off madly including my 5 year old grandsons voice! Makes for some fun (not) when I have the little fella over at my house! On the one hand I have a squeaky five year old and on the other I have a 14 yr old who can't bear to be in the same room as him as soon as he starts talking!

 

[justy]

Perhaps ask them if they would consider a staph infection?

Mine also used to happen at night and I would wake up choking with my pillow covered in blood - not nice. I don't blame him for not wanting the cauterising again.

 

[justy]

This gives some information as to causes etc

http://www.nhs.uk/Conditions/Nosebleed/Pages/Causes.aspx

 

[JoanDublin]

This gives some information as to causes etc

http://www.nhs.uk/Conditions/Nosebleed/Pages/Causes.aspx

Thanks for that Justy. I will defo ask them about a staph infection when I see the specialist. If it's the same specialist he saw last year, she is a particularly unlovely individual...... A right charmer, NOT. Should be fun

 

[DeGenesis]

I have heard of people having chronic nose bleeds in moldy environments.

 

[Helen]

And from vit A deficiency.

 

[alex3619]

Lots of us get nose infections, or something that looks like an infection. Some of us get nose bleeds. I used to get them but they went away. However I have sufficient nose blockage a lot of the time that it can interfere with breathing. Some of us get temporary relief from antibiotics, but not always. There is not enough research in this area for us to be sure.

One thing that should be considered, aside from the ones already mentioned, is some kind of connective tissue disorder.

I regard nose bleeds as a less common associated symptom.

 

[DeGenesis]

I use a corticosteroid for a week or so every once and a while and find it very helpful for keeping my nasal passages open. Newer sprays like Avamys apparently hardly enter systemic circulation. I remember Nasonex. That stuff always dripped down the back of my throat. Over time corticosteroids thin tissues and increase the risk of nose bleeds. It happened to me. Maybe your doctor could put you on a short course.

Nasal rinses (not sprays) saved me once upon a time, until I over did it and became dizzy. Now it hurts my same ear if I blow out too hard, even years later.

My sinus health has improved a lot with gentle blowing, never covering a nostril. Steam showers are awesome, too.

 

[alex3619]

Nasal corticosteroids only help about half of us. I am in the half that do not respond to them. Doctors didn't believe this was happening some years ago so ran a clinical trial. Their results show half of us have no response ... ME is so counterintuitive, even to doctors.

 

[maryb]

I have them periodically, they just go on and on, seems like for hours but my blood is clotting so I don't worry too much. Mine are definitely linked to sinus problems, I can tell when wake up with a stuffy nose, either because of mould, or food intolerances, that my nose will bleed as soon as I have to blow it.
I'm touching wood as I type this but I have stayed out of mouldy environments and been really careful with my food intake over the past couple of months and have been sinus clear/nose bleed free...............fingers crossed....
Hope you get to the bottom of it, must be really rotten for your son.

 

[maryb]

@JoanDublin
Its a pity you're not in the UK. When I first got ill, I went to see the most lovely ENT man, He's one of the top in the NW UK. (he's also Irish) I explained all about how the ME had come on in a sort of letter. He was so patient and tried what he could think of but of course it couldn't help long term. In the end he said its probably chronic viral labrynthitis. I still go to see him occasionally when I'm desperate with the head pressure or the like, he will always refer me on, so don't forget that, these consultants can bypass your GPs. What I'm trying so say is if a consultant really gets that there is something seriously wrong they will and can help. Sounds like you don't have one of those...
BTW I also had a rhionoplasty a hundred years ago, I have one weaker nostril (left), that is the side the nose bleeds always come from. I suspect the blood vessels are weaker and can't take the pressure of the sinuses. See if the side they did the cauterization on is where your son's is coming from out of interest.
sorry my brain is a bit mush...that sounds a little garbled, its my best effort for today I think

 

[Abha]

Hi again

Does anyone suffer from nose bleeds which came on only after the onset of M.E.?

Young lad gets about five or so a day and they are pretty nasty. He was seen by a specialist last April who cauterized a vessel in his left nostril but within an hour or two the bleeding started again and since then its actually got worse. The other nostril has also recently joined in the party.

I was just wondering if this is something related to ME or totally separate?

I have an appointment on the 28th August with a specialist so if anyone has any information indicating that it could be ME related, I would much appreciate it.

Cheers

Hi ,
Sorry to hear about that young boy's problem.
I had severe nose bleeds as a child.At that time in 1940s my GP told my mother(nurse) that it was OK(?)...and that it was a type of release(as far as I recall).More recently with PTHP(Professor Chris Thompson/Dublin)and TBI I have been wondering if it has anything to do with head injuries(pituitary too).

 

[JoanDublin]

@JoanDublin
Its a pity you're not in the UK. When I first got ill, I went to see the most lovely ENT man, He's one of the top in the NW UK. (he's also Irish) I explained all about how the ME had come on in a sort of letter. He was so patient and tried what he could think of but of course it couldn't help long term. In the end he said its probably chronic viral labrynthitis. I still go to see him occasionally when I'm desperate with the head pressure or the like, he will always refer me on, so don't forget that, these consultants can bypass your GPs. What I'm trying so say is if a consultant really gets that there is something seriously wrong they will and can help. Sounds like you don't have one of those...
BTW I also had a rhionoplasty a hundred years ago, I have one weaker nostril (left), that is the side the nose bleeds always come from. I suspect the blood vessels are weaker and can't take the pressure of the sinuses. See if the side they did the cauterization on is where your son's is coming from out of interest.
sorry my brain is a bit mush...that sounds a little garbled, its my best effort for today I think

You're so right Mary. If you get a decent consultant then you stand a better chance of resolving anything. Here's hoping I can win this one around! The side they did the cauterisation on (left) was the one that initially caused all the trouble and that was the same one that got worse immediately after and for the next 12 months.

In the last few months though the right one joined in the party and for a while it was both nostrils. Now it seems to be primarily the right one. He gets lots of clots coming from his nose.

I suppose in the overall scheme of his problems it's not a major one but it is distressing and uncomfortable and I think needs more investigation after two years other than merely cauterisation again.

 

[JoanDublin]

Hi ,
Sorry to hear about that young boy's problem.
I had severe nose bleeds as a child.At that time in 1940s my GP told my mother(nurse) that it was OK(?)...and that it was a type of release(as far as I recall).More recently with PTHP(Professor Chris Thompson/Dublin)and TBI I have been wondering if it has anything to do with head injuries(pituitary too).

That's interesting because before he got ill he was a keen Gaelic football player and was always getting hit in the head with balls, elbows, etc etc. Also, now that I recall, last September when he got back to school for a few days he got a serious whack on the side of the head with an apple thrown at full pelt. It knocked him down and almost knocked him out. I wonder could that have worsened things? Hmmmmm

 

[taniaaust1]

Nosebleeds arent common in ME but as the others said there are a few things which can cause them with this illness.

Another thing which hasnt been mentioned yet which could cause with ME, was if he was getting very high BP spikes. That can happen if someone has coexisting POTS of the hyperadrenalic (dont know if I spelt it right) kind.

I really think it needs to be figured out why its happening.
.................

Not related to ME but both I and one of my children used to get severe nose bleeds. Ive no idea how this worked but a specialist decided to remove my tonsils when I was 4 years old as he said it would stop the nose bloods I got a lot. In fact it did work.

My daughters nose bleeds turned out cause she had a deformatory in her nose, she had basically no skin covering over her blood vessel in there (they suggest skin graft for her). She had a couple of very very scary nosebleeds (one so bad someone had found her collapsed on a roadside, laying in and covered in blood.

anyway, all the best in figuring it out, so many things can cause this issue.

 

[Abha]

That's interesting because before he got ill he was a keen Gaelic football player and was always getting hit in the head with balls, elbows, etc etc. Also, now that I recall, last September when he got back to school for a few days he got a serious whack on the side of the head with an apple thrown at full pelt. It knocked him down and almost knocked him out. I wonder could that have worsened things? Hmmmmm

Joan....As you are in Dublin ,I think it might be a good idea to take your son to see Professor Thompson(Beaumont) as he is an expert on PTHP(pituitary issues too).That GP(mentioned above) who dealt with me all those years ago was an Irish Rugby player(pre War?).I have also contacted an endocrinologist to rule out/or in PTHP, in my case.I now believe I have the latter.According to the Daily Mail article in May and other articles that I have read since, many people being diagnosed with ME/CFS probably have PTHP(and no one has recognised that).NICE seemingly have ignored it and I believe in Scotland a Group there are fighting to get it recognised so, that the patient can get the treatment(hormones etc) that their case may require.It is much easier(cheaper?) to send patients off to Psychiatrists/Psychologists.