Sleep Apnea with Pulmonary Hypertension

[JustBreath]

Hi Everyone,
I'm new here. So I really tried to spend a month reading this site before posting, so as not to repost something here already....Sorry if this is long-winded...I'm a 50 year old single female. I had a really bad choking cough (on and off) for the past 4 years and finally broke down and went to the doc after I began to loose all my energy like a deflated balloon. It's so bad, that I'm not even working since a month ago, Before this I had 2 jobs and was very happy, social, and very active. I'm exhausted going from room to room in my house now. I cant even do a load of laundry. I've been to the ER 4 times in the past month after having a problem breathing at night. I used to be extremely active up to 4 months ago. Now I don't feel like leaving my house because I just don't have the energy. I look super young and have always lived a healthy lifestyle. I have never smoked or done drugs. I rarely drink...maybe 1-2 a week at most. but I did work in bars for a long time when I was younger so unfortunately, I did get a lot of second hand smoke.

After seeing 6 different specialists and trying tons of meds, they diagnosed me with a "stage 4 Pulmonary hypertension" and sleep apnea. believe it or not, Ive never really even snored. They are also still looking for some sort of blockage or blood clots. My blood pressure is super high and we are trying to get it down. I am having a right heart cath test in 2 days to try to figure out all of this and decide on treatments and a plan.

In the mean time, I was just getting used to my cpap machine. I was up to wearing it 6-7 hours and all of a sudden began having horrible chest pains at night, front and back, between my shoulder blades, gasping for air, and having a high pulse. I wake up sweating with the mask on and rushing to get it off to breath. I had 2 ekgs this week, which were not so perfect, but blood tests showed no heart attack. I feel its the machine settings but the sleep specialist says no, the "9 setting with 4 humidity" is perfect for me. My machine shows a 100% fit with no leaks. This sleep doc is a highly recommended doc here in Denver, in practice with my pulmonologist ,so he is aware of all my issues with the lungs. I believe he is really knowlegable and thorough. He admitted it's going to be a hard road for me.
The chest pains begin about 4am and wake me up, so I take off the mask and I'm able to sleep better a few more hours without it. I just cant seem to be able to use it more than 4 hours right now and I'm choking a lot. I feel like I'm going backwards with it. He did order oxygen for me, but I don't have it yet. Hopefully that will help with my choking. Apparently the cough is a symptom of the hypertension. I have coughing attacks that are similar to an asthma attack. I get dizzy and almost faint. It's like vertigo, and no inhalers help at all. I've tried them all. I feel like I'm drowning . Sometimes I am afraid to go to sleep because I think I might die in my sleep from choking. Yesterday my blood pressure was 145/111 after I woke up coughing. LOL. I did discover that if I put Vick's on my throat and chest before I put my mask on, it does open my air passages better and helps me to breath when falling asleep. It gives me a cool feeling that is soothing. It's better than any med the docs have given me. Doesn't smell so sexy, but o well. I should add that I also bought a really good air purifier for my house. This helps a little bit to make the air better.

I feel like I'm too young for all this . It's really depressing.

Just wondering if anyone else here has pulmonary hypertension, copd, or lung disease? And is it a problem adjusting with your sleep apnea? Any advice would be encouraging.

[BlackSpinner]

Did they check you for GERD - silent acid reflux? If not then try raising the head of your bed by 6 inches and see if that helps.

If it helps go back to your doctors to get meds and be checked for more for that. It also causes me to cough a lot because the acid causes a lot of mucus to be made to protect the linings of the esophagus.

[andycole]

I have GERD, borderline HTN, lung cancer survivor, and complex apnea. I have my headboard raised with 2x4's. While I am now having other issues (just got pacemaker), I was doing pretty well on my ASV device and full face mask. Good luck.

[sleepyowl]

Thank you for sharing this. I believe I'm in a similar situation. I've been monitoring my blood pressure for the last few days, and it's through the roof. I'm going to my doctor tomorrow morning to verify and explore options. It's taken me 5 years to finally use my CPAP due to claustrophobic issues. I've noticed my heart racing right before using the CPAP, and I'm sure it was due to the panic feeling I would get. My nasal mask has helped tremendously so there isn't a lot of "mask" in my field of vision. And I can definitely relate to the (almost complete) loss of energy.

[JustBreath]

Yes. They tried me on meds for that for 6 months...no difference. It's not Gerd. But I will try sleeping more at an angle. Thanks for the tips!

Today I was really desperate to get my pressure down before my Right Heart Cath Test coming up. I tried things that I normally wouldn't do, or spend money on. I had acupuncture . I feel much more relaxed and my blood pressure is down to 110/82. It has stayed down all day. Acupuncture was interesting. She did a lot of work on my head and my feet, and stated it's good for hypertention. I was surprised it worked that well. I may have to do this from time to time, if I can afford it. I got lucky this time. The girl charged me 35.00 and worked on me for 90 minutes, really taking the time to learn my issues. She was very experienced. I felt pretty calm.

[izzati]

Hi JustBreath

6 years ago when i was 22y.o i had transient PH which resolved after 1 year anticoagulant
i had a lot of chest pain back then so i ask my dr
I learned that when you hv PH , your lungs dont get enough o2
then it starts to get tired
but our lungs has no receptor to detect pain
unfortunately the lung nerve share a common pathway with the heart
so it can cause same chest pain like heart attack as well

the chest pain tires me off so i would spent the whole day sleeping
in my case it did goes off after my PE resolved
im not sure how to help in your case
cause really need to find out about the cause of PH other than sleep apnea
cause PH have many types and different treatment of each type

Hang on.
Take care .

[kteague]

It gets tricky when there are multiple contributors to chest pain and shortness of breath. Before diagnosis and early on in CPAP treatment I was also in a quandry. Cardiac tests, breathing tests, all kinds of scopes looking for digestive or respiratory issues. My heart was found to be slightly enlarged and was diagnosed with Interstitial Lung Disease, GERD and OSA. When cases are complicated I'm hesitant to say anything that resembles advice. Especially with pulmonary hypertension. While it is common for air to get in the stomach and cause pain, you aren't in a position to assume that's all it is.

Can you clarify things a bit for me? Do the choking episodes happen only when sleeping? The coughing fits? Is your chest pain during the coughing fits? Have you ever been diagnosed with a hiatal hernia? Sorry to ask so many questions, but sometimes there are clues in the details. Not that I have any answers, but maybe could suggest some things to ask you doctor.

I am also wondering about your mention that you don't have GERD because you were on meds for GERD for several months and they didn't help. That is not the same as proving you don't have it. Just means that med didn't resolve your symptoms. Some of your symptoms sound similar to those described by people with reflux. I'd keep that in the back of my mind if symptoms can't be attributed to another cause.

About your CPAP - it would be interesting to see what your machine data shows right before an episode. If your machine reports data, you might want to pursue it. Never know what some of the more experienced eyes here might see. A pressure of 9 may be perfect for your events, but maybe you could get by with just a bit less pressure, just in case you are getting air in the belly. Or maybe not. Machine data could tell you (and your doctor) if you have any leeway. And the humidity - those settings are there for your comfort. Feel free to experiment. The doctor cannot know with any certainty how much humidity you will need at home from night to night. The weather changes, humidity in the air changes, our heating and a/c affects humidity in our homes. It can take some trial and error to dial in the humidity level most comfortable for you. Some users need higher humidity to keep from drying out. I am one who if I have the humidity over 2 it will cause congestion and drainage that runs down my throat during sleep and I wake up choking and coughing when it drains into my lungs. Other than maybe feeling dried out, trying another humidity setting will not alter you receiving therapeutic treatment. In fact, I'd probably start there. It's a no harm/no foul effort, and you just may get lucky and find out it helps. Good luck sorting through things and finding your way to feeling better.

[JustBreath]

I agree about the Gerd still maybe being a problem, but 2 of my docs stated they didn't feel it was my issue and none have wanted to treat me for this any more. I currently am seeing a ENT, a allergist/asthma doc, a cardiologist, 2 polmonologists (1 specializing only in PAH), and a sleep doc. And they all communicate. Now they want me to do a cough study because they think I'm a medical mystery. I haven't said yes or no yet. Its crazy and Its taking all my time to figure out why I went from feeling good to feeling like I'm dying in just a few months....However, after posting here, I decided to go back on the med they originally prescribed for gerd, which was 30mg "over the counter" LANSOPRAZOLE 2 times a day to see if I feel a difference again. I am really at the point of just trying to diagnose/treat myself because the process is going so slow. Plus, they all love to give you steroids....lots of them. Those worked to open my throat in the beginning, but not any more.

The cough is all the time. Especially when I talk or exert myself, I cant even breath in deeply without choking. I actually cough a little less with my cpap machine on. As far as the chest pains, it is usually during the night about 4 hours into sleep time. The chest pains do wake me up. I've had a throat x-ray, sinus x-ray, 2 ultra sounds, an echocardiogram, an mri, a vq scan, 3 ekg's, about 10 chest x-rays, enough blood work to wake a family of vampires, and now the right heart cath with vascular challange test is tomorrow.

[kteague]

Just to be clear, I wasn't suggesting you go back on the GERD med that didn't work. I'd probably first try the elevated head of the bed along with using CPAP. Resolving my sleep apnea really helped my GERD to the point I no longer needed meds for it. Have you already been on a steroid inhaler and rescue inhaler? They helped break up my cough after several non-stop years. Not familiar with a cough test, or how your lung issues are related to coughing, but I feel for you. I remember those days.