December 5, 2019 at 6:02 pm #21979
Nosebleeds was something my son struggled with a lot when he had PH. The articles I have read list this as a side effect of supplemental oxygen use or medications such as blood thinners. But this was an issue for my son prior to any of this use and I believe was a symptom of his PH. When he became much sicker the nosebleeds increased and became more challenging to control.
Do you struggle with nosebleeds and if so, what are yours believed to be a symptom of? How do you control them?
December 5, 2019 at 7:47 pm #21990
Yes!!! Especially this time of year with it being a lot dryer and cold here in New England. The oxygen also doesn’t help because it dries up the nose even more which leads to the nose bleeds for me. I was getting them more frequently a few days ago especially because my nose was cracking from the weather. I have used creams and lotion for faces to put on it and when it gets really bad I get medicated cream to help give more moisture. I get a brand of it from my dermatologist office.
December 6, 2019 at 5:29 am #21997ValerieParticipant
Brittany, I know exactly what you mean. Although I do not use oxygen, but constantly bleeding nose is an eternal problem. Before, I was ready to faint at every hint of blood, but now I try to just calm down and stop, breathe evenly and everything will pass. This is often due to excessive voltage or dry air. I think I read here on the PH news site that moist air helps against infection with acute respiratory viral diseases. Now I use a humidifier at home to protect myself from bacteria, including to moisturize my nose (especially in winter). I don’t even need a hygrometer, my nose accurately detects humidity, lol.
Colleen, I support your theory that nosebleeds are a pH symptom. I had quite severe nosebleeds when I was about ten years old (when my medical records were only records of mitral valve prolapse; we didn’t know about PH yet). I wasn’t taking any medication at the time. A couple of times the bleeding was so severe that it was impossible for the school health worker to overcome it. Only doctors from “ambulance” with the help of rigid methods coped with it, and once it was succeeded to win only in hospital (it seems, I then lost half of blood from a body!).
After the pH diagnosis, I took anticoagulants for the first two or three years (as I understood, because I had a very high hemoglobin), but once because of the strain, my nose bled and only the doctors from the ambulance could stop it, making some kind of injection. After that, I don’t take anticoagulants, but I always keep a hemostatic sponge handy. And Yes, I’m surprised, but my hemoglobin dropped to normal two or three years ago!
Well, there’s definitely a connection, but I’m certainly not a doctor. I think there’s something between PH, heart disease, fragility of blood vessels, and blood clotting.
December 6, 2019 at 10:34 am #22005
wow I am sorry that you had to experience nose bleeds so severe like that to the point where you needed and ambulance and hospital to help stop the bleeding. I am glad that they were able to get things under control. That must have been a huge source of anxiety for you too, especially if it was something that was so unpredictable. I can relate to that anxiety feeling when you feel like you don’t have the control over your body. That is very frightening for sure.
There certainly is a connection with blood vessels, the heart, and PH and that is why the medications for PH also target the blood vessels in the body and help with contraction of them. The thing with PH meds is they usually don’t JUST target the pulmonary arteries and vessels, the meds end up dilating ALL of the blood vessels including those that are in our noses (which may lead to more pressure in the nose and nose bleeds too) Just a thought!
December 6, 2019 at 8:29 pm #22014
@valeriekv and Brittany,
The nose bleeds are another example of the triple wammy that many patients face in various ways. Between the PH, meds and oxygen, I guess nose bleeds are inevitable.
Since transplant my son stopped getting nose bleeds. I don’t miss them because I’m like you Valerie, I hate blood! It never upset my son but when the bleeding was bad and unstoppable, it really stressed me out!
December 9, 2019 at 5:08 pm #22030Mary EasleyParticipant
My nosebleeds look like a murder scene. I had 4 transfusions last summer due to nosebleeds. Besides PAH I have something known as HHT, Hereditary Hemorrhagic Telangiectasia. A person with HHT may form blood vessels without the capillaries that are usually present between arteries and veins. It can also be a cause of PAH. It is a genetic mutation that has a 50% chance of being passed on to one’s offspring. A lot of people have dermatologic telangiectasias, little red dots on the skin. When they burst, they emit a fine stream of blood, timed to your pulse, that project as far as 4 – 5 feet. If, however, you have HHT, the absence of capillaries can be found anywhere in your body. Brain, lungs, liver, GI tract, anywhere. When I was diagnosed with PAH, it started due to severe hemoptysis. I had never heard of HHT until an ENT cauterized my nose during my last hospitalization. Suddenly, a lot of family medical history made sense. My mother had horrible nosebleeds. Her brother and her cousin died from nosebleeds. My sister and her son have nosebleeds. My daughter doesn’t have nosebleeds, but she has dots that have burst on her lips and hands. She always carries super glue! HHT, like PH, is on the NORD list of rare diseases. Also like PH, there are specialty medical centers around the country that deal exclusively with HHT.
December 9, 2019 at 5:16 pm #22033
I never heard of HHT. Considering how PH and it’s treatments can cause significant nosebleeds, having HHT must really become very problematic!
I’m sorry to hear about your relatives who died from nosebleeds. I had no idea they can be that severe for some people.
Thank you for sharing this information!
December 10, 2019 at 10:28 am #22037
I am so glad that you have joined us on the forums and I am already learning so much from you and hearing your story. I have also never heard of that condition but it makes sense as to why you are having an increase in bleeding when that happens. As Colleen said, I’m sure that some of the medications and therapies and even the oxygen doesn’t help much with the nosebleeds. I’m sure that in some ways it is a relief to hear your diagnosis and know that it is genetic so that others can be aware of it too. My family has a dominant genetic disorder that causes a wide range of physical conditions and diseases and it is a 50/50 chance of getting it. I think that the more you are aware of medically, the better you can take care of yourself and know what to look out for.
December 12, 2019 at 2:45 pm #22064
HHT is caused by several genes. About 50% of people with HHT have a defect in the Alk-1 gene. Of these patients, 1 in 100 develop PAH. Almost all patients with HHT have nosebleeds which get worse with age although about 5-10% do not get nosebleeds and the absence of nosebleeds does not mean you do not have HHT. This is important because families who know they have HHT may mistakenly believe that family members without nosebleeds do not have the disease. In a family with HHT, 50% of family members will have the disease. It does not skip generations. It is important that anyone with suspected HHT or anyone in a family with HHT get tested because of the effects on other organs and the risk of stroke and heart problems which may be preventable.
Nosebleeds in HHT are made worse with medications that affect blood clotting. Many of the PH meds cause problems with clotting so it is not uncommon for a patient with PAH and HHT to have nosebleeds worsen, or even just start, when they get treated for PAH. A patient with PAH and a history of nosebleeds or a family history of nosebleeds should discuss the possibility of HHT with their doctor. You can read more about HHT at CureHHT.org
December 12, 2019 at 7:36 pm #22046danParticipant
Hi- Interesting and as usual ,useful topic. Always learn something here…Thanks each and all ! RE: Nosebleeds- i occasionally have them primarily due to dry winter Minnesota air and O2 24/7 although my oxygenator has a water reservoir. Found that of the 6-8 products tried for dry/blood and caked nose, Arm and Hammer ‘Simply Saline Nasal Mist’ works for me. No they do not pay me for that endorsement- lol. Have many many teleangiectisias on face particularly but also hands perhaps due to cold related diseases from ’05-06 Peace Corps days… good to learn about Super Glue Mary. The issue of humidifier is important. Zero RTs asked are willing to offer an opinion as to best make/model. Last winter bought a new one from Honeywell but it filled the filter w/a fine white dust which caused the electrical circuit breaker to fail and required an emergency visit from an electrician on a Sunday until cause determined. live and learn. Any brand and specific recommendations welcome here.
Again – Appreciate the site and particularly the strengths of those afflicted. Appreciatively-peace
December 12, 2019 at 7:37 pm #22080
I’m glad that this was a useful topic for you . Thank you so much for your input and feedback. I will have to invest and check out that saline mist that you are referring to. I also get a dried out nose and nose bleeds due to the oxygen use and the cannula being up my nose. Especially that mixed with the colder weather it’s like the perfect storm!
December 12, 2019 at 7:40 pm #22081
Thank you for all the helpful information about HHT regarding genetics, how hereditary it is, and the importance of getting the proper testing done. I have a few genetic conditions and my main condition contributed to a lot of my chronic illnesses that I have. It is not studied that much but it is a genetic mutation that is 50/50 chance of having it passed on from one person to the next. I have studied it a lot and learned a lot from it! I’m sure you have done the same for HHT
It sounds like you are well informed and know what to look out for.
December 12, 2019 at 8:36 pm #22088
The problem with the mist types of nasal sprays is that they evaporate quickly and leave the nose drier. A spray made of a mixture of Rose Geranium and Sesame seed oil tends to keep the nasal mucosa moist for much longer. It can be made or ordered at a compounding pharmacy and a number of people with HHT use it.
December 13, 2019 at 12:01 pm #22092
Yes those mist sprays can definitely be drying and can make the nose pretty chapped on the inside. That’s why I never liked doing the saline sprays when I had a sinus infection when I was younger. I used to get them pretty frequently. That’s great that you found a combination of something more natural that works well for you ! Where did you first learn about that?
December 13, 2019 at 12:53 pm #22096
I believe it was the Johns Hopkins HHT center that started using this for HHT patients and many have found it helps with their frequent nosebleeds especially when the air is dry in the winter and when you fly in a plane. I suspect it would also be helpful for those using oxygen. It keeps your nose moist for long periods of time and easier than trying to use ointments.
December 13, 2019 at 2:05 pm #22097
Thank you for the information! I know it will help others that are looking for something to help manage these symptoms.
December 13, 2019 at 3:43 pm #22099
Scott, wow, that is some really important information about HHT that you shared! Thank you! I bet there are many who think that because they are not symptomatic they are not at risk. It sounds like HHT is in need of awareness and advocacy just like PH.
December 13, 2019 at 3:53 pm #22100
Thank you, Dan, for your kind words and helpful feedback. It always nice to hear when the forums are making a difference.
When you mentioned finally finding a nasal mist that works well for you it made me think of what my eye doctor told me about eye drops. He said that many, including a top, household brand, is not what he would recommend using. The drops that contain a lot of chemicals only help for a short time; can increase the problem and cause people to put drops in their eyes all day long, which makes them run out quickly and buy more. He said the product with the least amount of chemicals and more saline is the best to use. I wonder if this is also the case with nasal mists?
I too, would be interested to hear recommendations for humidifiers. Anyone have any suggestions?
- You must be logged in to reply to this topic.