Big nosebleed--causes? treatments?

Last night, sitting nicely in a bridal shower, I had a massive nosebleed--the first one I've ever had that I couldn't stop within 10-20 minutes. (And I haven't had many in my 11 years of ITP.) About two hours after it started, the emergency room doctor cauterized my nose. I will have the packing removed on Monday, day after tomorrow. Meanwhile, it feels like the worst head cold I've ever had. I also had serious nausea a few times this morning--don't know how that is related--pain, maybe, things unbalanced in my sinuses? (My husband thinks swallowing lots of blood.)

My platelets were 33K last night--which is very good for me. I have no idea why my nose would just start bleeding--and not stop. Any ideas?
Pressure and cold, for the first time, didn't work to stop it. The doctor said instead of pinching my nose for 10 minutes, ITP people need to pinch bleeding noses for at least 20 minutes--without releasing for an instant to peek. I pinched for more than 20 minutes--without success. Anyone had success with other treatments?

It's very hard to breathe, talk, eat out of the same opening! Sleep is almost impossible. Any suggestions from anyone who has had her nose cauterized?

Hi Karen

My son had a similar sounding nosebleed back in June - first bad one in two years of ITP. His consultant said that (had I told him about it at the time) he would have treated him. This is because he said it was possible to get an "acute" phase even in chronic ITP, and during these phases, severe bleeds including ICH were more likely.

My son's nosebleed totally blew my confidence about ITP not being a problem for a while, but he hasn't had any bleeding problems since.

One of my other kids had his nose cauterised after a year of frequent and heavy nosebleeds. It took about a month to be back to normal, and during that recovery period, he did continue to get bleeds. He was advised to use a twice daily sinus rinse for about 6 months post cauterisation. It worked brilliantly for him - since that time, he hasn't had a single nosebleed.

Hope you are better soon

Ali

Thank you, Ali. This makes me feel better. What is ICH?

Iintracranial hemorrhage - brain bleed

Ali - I've never heard that before. Are you saying that an 'acute' stage can result in severe bleeding even if counts are in a safe range?

Thats what I understood his consultant to be saying, yes.

He said that people with chronic and stable ITP can have "acute" phases where their ITP does not behave in a stable way, but more like acute ITP where bleeding is more common. He said that he normally treated patients like that to get their counts up, because there was research to suggest that ICH or other severe bleeding was more likely in one of those phases.

I'll ask him properly next time - Dougie is due to see him again in about 3 weeks

Ali

I would believe this. I've had a ton of dark, ugly bruises appear spontaneously at a normal count. When I saw the hemo, he wasn't surprised and said, "Well I've no doubt platelet function is compromised". But I don't get it. Shouldn't they be worried about this if your platelets clearly aren't working as the should? Of course, I didn't think to ask him this at the time.

Let us know what Dougie's hemo says, Ali. I'll try to remember to quiz my hemo the next I see him.

Thanks,

Lily

That sort of goes against everything we've been reading for years. Most people count on those safe numbers, which is what the experts claim are livable. Interesting discussion.

Platelet function is a whole other facet. Function can be faulty in some people with ITP and I'm sure that can change at times.

Unfortunately, I only remember some bits of the discussion. Namely that you could get acute phases in chronic ITP, and some research he quoted that showed that ICH patients generally had a kind of prior warning - namely, nosebleed episodes in the two or three weeks prior to their ICH. He said that he had had personal experience of this with patients. And for this reason, he always treated patients with these symptoms regardless of what their platelet count was, because the nosebleeds weren't always connected with a lower than usual count.

The idea of platelet dysfunction makes some sense to me - same platelet level but they are not working as well as usual for some reason, so bleeding would be more likely? I will ask properly at Dougie's appointment at the beginning of October.

In the past, I've assumed (possibly wrongly) that Dougie's count is always safe - because he has got down to 0 on a few occasions without much ill effect. The whole nosebleed episode threw my confidence in this assumption as did the subsequent conversation with his consultant.

Ali

Well there are certainly studies showing that most people do pretty well with counts over 30K. I've read studies posted here (probably by you Sandi) showing that the real concern is counts under 10, so I imagine that's what my hemo is going by. It sounds like Dougie's hemo is going by personal experience, which is fine, but it's always possible that he's had a string of bad luck etc. On the other had, lots of hemos talk about treating the symptoms, and nose bleeds are certainly one of the symptoms that concern them, while bruises are not so concerning.

Dougie's counts are not ever very high so it wouldn't take that much for him to show bleeding symptoms. Maybe he ate something that thinned his blood at that time? All those healthy foods are not so good for those of us with low platelets and people have posted here about seeing an increase in their symptoms after they've, for example, taken vitamin E even at quite good counts.

The good thing is that Dougie is so young and presumably has strong healthy veins, so he should do better than us older folk.

Lily

Ali,
For me you have raised a very intriguing point here. The inference seems to be that the quality of platelets is as much of a factor in the body's ability to control bleeding as does the quantity. This 'acute phase' suggestion appears to be not unreasonable and would fit the current 'conventional thinking' on only treating the patient with, and for, bleeding issues and not simply because they have a low count.
Having ITP with a count ranging from 24 in January this year (first diagnosed) to a maximum of 27 last week but fortunately without any bleeding presentation this gives me a great deal of food for thought and possible discussion.
I read from others who have commented on their own medical history over time that this is a new slant on things and I am sure that any novel thinking, with supporting evidence, will be welcomed.
Even if you come back later with a slightly different explanation from the doctor it will still be worthy of further consideration.
I hope things improve for Dougie.
Regards
Eric

I wanted to add something of insight that happened to me last year when I had a bad episode of ITP(last July). When my platelets first crashed, my platelets went all the way down to 3-4 and I did have symptoms of bleeding; dark bruises and blood blister in the mouth and tongue. I was in the hospital for two weeks and didn't improve much with my treatment (IVIG, steriods, Decadron). As I came back to the PDSA site and started reading more, I did start to make changes in my diet; eating less of foods that "thin" your blood--took tea out of my diet. I then went home for two weeks, but was admitted back to the hospital with a count of 1. This time around, I didn't have hardly any signs of bleeding; no bruising or petachie (just very minor blood blisters).

So, even though I had a very low count of 1, I didn't really feel that bad. I was being very carefull what I eat and drank and didn't have hardly any symptoms. I personally feel that my body was trying to heal itself from the first episode and the quality of platelets had improved (along with rest, too). This is just my theory for myself. But, If and when my platelets do fall again--I plan on taking this same approach. And, I, too, might give the homeopathy a try.

Karen,
I forgot to mention that I hope you are now feeling better from that nasty nosebleed. Did you eat anything on the list that thins your blood (or maybe a few different things)? Also, have you added any new medications? Just a thought. Also, sometimes the weather can have something to do with it--like drying out your sinus membranes.

Hope you are better.
Dee Dee

Thanks for asking, DeeDee. I think I suffered a lot more from the treatment--the packing of the nose for 2-1/2 days--than I did from any loss of blood, which I was told was not enough to be a worry. But an unexplained and uncontrollable nosebleed certainly makes one suffer psychologically.

I haven't been able to link any different food or meds or environmental conditions to the sudden nosebleed. I was at someone else's house--but I've never had a nosebleed at that home before.

At a PDSA convention in San FRancisco a few years ago, I asked one of the specialist doctors (I think it was Bissel) if I should avoid any foods or supplements, and he told me only Omega 3s. From the PDSA list of foods that might "interfere with platelet function," I eat chocolate, garlic, onions, tomatoes regularly, and blueberries in season--but they don't seem to have caused me any trouble before. I also do take glucosamine and chondritin for my arthritis--which I have done for many years--and have never remarked any link between platelet numbers or function and that supplement--or any of the foods on the list.

I did learn some useful things from this experience--which most of you probably already know. Most of this came from the head-and-neck department doctor who removed my nasal packing yesterday.
If you have a nosebleed, sit down, lean your head slightly forward (you shouldn't be swallowing your blood), and pinch the soft part of your nostrils together for 10-20 minutes without stop (without peeking!). If that doesn't work, a squirt of something like the spray decongestant Afrin might slow or stop bleeding.

To help prevent nosebleeds, use saline spray often, several times a day. If you have peticiae in your nostrils (I had no idea that I did--not a lot of us know what's inside our nostrils!), have your nostrils cauterized (not with a packing such as they do for nosebleeds). The H&N guy who did mine used a swab and something that stung for a few minutes--quite a few minutes. He said this should prevent nosebleeds for a long time. He also advised me to use an antibiotic ointment (like Polysporin) inside my nostrils from time to time.

I'm glad to hear that you are doing better. My son, who has really bad allergies, use to get nose bleeds when he was growing up. And I do remember the doctor telling us to have him lean forward and pinch the end of his nose. I think that it helped sometimes, but other times it just kept bleeding.

I just mentioned the foods on the list because I know for me, some of the foods that I was eating (tea, tomatoes, blueberries, garlic and onion, etc.)did aggrevate my symptoms last year. But, my platelets were below 5,000--so I needed to be extra careful. Since yours stays up in the 30's, that's not quite so bad or worrisome. It was a little wierd, though, to notice that my symptoms did decrease in the matter of a month when I discontinued the foods on the list. I just feel that if and when my platelets fall that low again, I will do whatever I can to help keep me from being in real danger. I will have to admit that I cannot give up my chocolate! I don't eat a great deal, but I love to have some.

So, for now, I just limit some of the things on the list. I don't eat tomatoes, but I do eat tomato-based foods (and sometimes salsa). I stopped drinking tea and any type of diet drinks or sodas. I only drink decaf coffee when we go out to eat. I don't feel this is that much of sacrifice.

Thanks for all the good advice; and, hopefully, you won't get that nasty nose bleed again.