2+ years with no answers: nosebleeds, fatigue, weakness

[ngasco]

I am a 43 year old petite female otherwise healthy.  I was active, exercised at gym 3x week, did yoga.  
About 2 years ago, I suddenly started bleeding from right nostril but thought nothing of it.  Since then, I have not went a full month without an episode, and I sometimes bleed for hours with multiple huge clots coming out my nose and throat.  Even after the bleeding from nose stops, I will "leak" for rest of week nonstop down my throat.  Along with this, I have severe fatigue, brain fog, and intense upper body muscle weakness, pressure/pain in entire head (including ears and eyes), dark circles around eyes, and shaking hands (similar to a low blood sugar attack).  I have been to 4 ENTs (including Standford), who have done nothing other than cauterize without success (it is not located on septum wall but further up and I don't think they can get to the area) and pack my nose (with extreme pain and infection resulting), and hematologists (no blood disorder or abnormalities--all bloodwork looks fine).
I can barely function any more or work. I have no energy to go out, cannot exercise (or I bleed), and have trouble sleeping due to constant bleeding.  
I plan to see allergist next but am doubtful of getting answers.
Has anyone ever experienced this rare set of symptoms?

[maatson]

10% of patients with epistaxis will have no identifiable cause. Transferrin levels refer to storage iron, and possibly reflected to the bleeds.Swallowing crushed ice, or small ice-cube may help in reducing the bleeds. Vit-K does help in selected cases.

[jemma116]

If you are taking iron supplements are there is still no improvement, you should see your doctor to get a blood test taken to find out what the iron levels are and if there is any other blood problems.  

You do need to get investigated why your ferritin levels are low so that you can receive the correct attention to get this rectified.

If you continue to have iron level problems that are low, then you will feel tired.

Tiredness can also be a symptom of lots of other problems in the body, including arthritic and inflammation problems in the bones.  A neurologist will be able to find out if you do have any trapped nerves nerve damage or any neurological problems.

When you say that you have "severe fatigue, brain fog, and intense upper body muscle weakness, pressure/pain in entire head", have you had an xray of your upper spine and had your blood pressure checked?  Arthritic problems and changes in the spine can cause some of the symptoms that you mention.  Clearly the rheumatologist has ruled out any autoimmune arthritic conditions.

Hope the neurologist is able to find the cause of your problem so that you can receive the appropriate treatment to get well again.

Best wishes.

[ngasco]

Thanks to those who replied.
I live near ocean and humidity in house is 70-80%, so I don't think dryness is the issue.  Just to be sure, I tried PurMist steam inhaler but heat bothers me.
I've had SO many blood tests over the years and they are ALWAYS normal, with the exception of low ferritin (iron storage) levels.  Take iron supplements, but no improvement.
Sugar levels normal.  I do not have hypertension (I have LOW b.p.), I do not have diabetes, thryoid levels normal, hormone levels normal, skin allergy tests for top indoor-outdoor allergens normal.  I am otherwise and should be according to tests a very healthy person.  Yet here I am, still sick.  I have seen many many doctors and all are baffled--ENTs (see prior post), allergist, GYN, acupuncturist, Chinese medicine dr, hematologists, chiropractor, rheumatologist,  will see neurologist next (going through them all one by one I guess)...

[jemma116]

If your nose still continues to bleed, you do need to get back to see the doctor and the ears, nose and throat specialist.

Have you noticed at all if the air is cold when you start to get these bleeds?  There is clearly something that is triggering off these bleeds.

I know that you did say that you have had blood tests, but you do not say how long ago that was.  As you have been having such bad bleeds for so long, you should get a blood test to check your iron levels and any other vitamin and mineral deficiencies.  

With the pressure in your head and eyes and ears, it is likely that you may have a sinus infection.   Normally I would have suggested steam inhalations, but I am not sure if you would be OK with that with bending your head over a bowl of steam.  

Make an appointment to see your doctor to get a blood test to check your iron levels, Vitamin B12 levels, because if these are low then you will feel weak and tired.

If you feel that you may be suffering from low sugar levels, it may also be a good idea to get checked out for diabetes or glucose intolerance.

Hope you get sorted out soon.
Best wishes.

[gramaof9]

i had this happen to me and my daughter, found out it was allergies, seasonal, and mostly from the air being very dry. once i turned on a humidifier no more nose bleeds. im not a physician but you could try this if it doesnt work go to the doctor.  hope this helps.

[HarleyMan1055]

Sounds like your lining in your nose is thin. I had the problem. I was told to use a nose spay and a humidifier. But you still need to see your doctor! I hope that helps. I wish you well!