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New Member Seeking PH Treatment and Sleep Apnea Advice
@irene is a new member in great need of our support and advice. She asked me to share what she mentioned in her bio.
She was diagnosed with PH in April 2019 and has tricuspid moderate to mild regurgitation. She is seen by a primary lung cardiology specialist.
She experiences shortness of breath when awake and little when sleeping, as well as dizziness, pressure and pain in her chest off and on and swelling under her right kneww
She takes 81mg’s of aspirin because blood tests show she is at 35% greater risk for embolism and myocardial infarction. She has Glaucoma and had a stroke 7 yrs ago.
The last several months her right ear has been plugged. She has tried everything from wax remover to over the counter ear pain.
She is 65 yrs old, has high blood pressure and obese – 230 pounds but most of her life she was thin. A Spirometry test ruled out COPD but told she needs the test every year because she was a smoker over 10 yrs ago.
My Opthamoligist asked if she was put on Viagra because it helps open vessels, but no one has put her on anything. The Cardiologist wants her to have a sleep apnea test in his office by insurance wouldn’t pay for it. Now she has medicare but has not been out of her home since the pandemic started. She lives in Florida which is spiking really bad and doesn’t want to go to any Dr or ER. She lives in a rural area and no one wears masks or social distancing. She is the only one who wears a mask, gloves and stays away from anyone, even when just getting her mail.
She really doesn’t know what to do. If it weren’t for the pandemic she would have gone to all of her doctors by now. Now she thinks she is deaf in one ear.d
Irene is asking what medicine should she be on and how she can have a sleep apnea test overnight with oxygen and the risk of Covid-19.
Desperate for Help!
Thank You And Stay Safe!???? – Irene
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12 Replies
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Thank You Colleen for posting this for me I really appreciate it????????
I meant to put swelling under my left knee and also I have severe Scoliosis and Sciatica.My legs feel numb at times when walking and fall asleep on and off…I don’t know if its PH and heart regurgitation or my Sciatica as I had 4 hrs of back MRI’S but I don’t know if its PH or my back causing numbness ECT.
I also get nausea when I’m sleeping at times and when I get up it’s gone?
I don’t know what medicine I should be on and if anyone is experiencing any of this? -
@irene although we can’t tell you what meds you personally should take, we can share what we are taking and how it has helped. My son was on triple therapy of IV Flolan, Sildenafil (Viagra), Tracleer and was also taking a diuretic, beta blocker and was on supplimental oxygen. It all improved his quality of life for 5 years but he eventually received a transplant. There are many people who survive much longer than he did on treatments.
I have attached a link to the PH association list and explanation of PH treatments. They might help you with your future conversation with your doctor.
I’m also added a link to a list of PH specialists. If your doctor isn’t a PH specialist you might want to seriously consider seeing one.
I know how scary the Covid situation is. My experience has been that hospitals and clinics are seeing people by appointment only and taking serious protective measures. They take temperatures and ask questions before allowing people in and everyone must wear a mask. It sounds like you really need to see someone ASAP, especially for your ear. I had a ruptured ear drum once from a serious ear infection and it kind of sounds to me like that is what might have happened to you at this point. My son had a lot of problems with his ears until they put tubes in 5 years ago. That helped tremendously, and yes, they do that for adults too.
Hopefully another member will jump in and share advice about your sleep apnea concerns.
Here are the links I recommend.
https://phassociation.org/patients/treatments/ -
Hi from sunny Arizona. Irene sorry to hear about all your problems. You sound like many of us on this forum. I have PH, GERD, PTSD, sleep apnea, peripheral neurophy, hearing aids, tinninidtis dentures,. I have been on oxygen about ten years, full time going on 5 years. The sleep apnea exam is pretty straight forward. You get wired up, you are on oxygen and monitored and oxygen increased if need be. I was on a c-pap for three-four years and now on a bi-pap since Feb. The bi-pap has me sleeping the best I can remember. I use a nebulizer twice a day. My legs and back and tummy are all swollen with edema. We just increased my water pills two weeks ago but swelling is not going down. Oh and my biggest handicap is I am a male. Seventy four so brought up old school, opionated, stubborn, stupid. Good luck Irene, these times make life more challenging but we will survive. Be Safe everyone. Al
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Hi from wintry Australia. I am a 78 year young female. Irene my main concern would be that your blood pressure is under control. I was diagnosed with severe PH in 2012 but am thankfully stable. However my blood pressure is labile and can shoot up or down for no reason, so I have to take meds for that. Silly as it may sound, when it goes up, I relax and sing or hum so that I can feel a vibration in my chest. It seems to do the job and is better than waiting in Emergency for 4 hours until a bed is available. If you feel sick at night, don’t go to bed too soon after eating or drinking anything. You will get gastric reflux and that’s not good. Also I take a coated aspirin because the plain ones upset my stomach and I was always feeling nauseous.I am on ambrisentan for my PH. As for the glaucoma. If you are using eye drops, some of them can have bad side effects, my husband has had to change his glaucoma drops a number of times so might be worth checking. I don’t have breathing problems in the daytime but when asleep and dreaming a test showed my oxygen goes down so am on 2 litres with an oxygen concentrator. CPAP drove me crazy, could not tolerate the mask and sleep deteriorated. I am wary about attending any medical facility too, but a good mask glo ves and hand sanitiser and I am off to get whatever care I need. Please see your doctors.
Al – you gave me a good laugh. Liz -
Hello Liz,
Thank you for replying I appreciate it!????
Yes I am on Timolol for glaucoma ,I don’t know what’s causing my nausea ?
I take coated 81mg Bayer aspirin.
I have hypertension its been at least 20yrs.It’s somewhat under control I take METROPROLOL 100 mg 2×a day and Losartan with a diuretic in it…I still have some swelling .
I also have pressure in my chest with shortness of breath day and sometimes when I sleep its frustrating.
Oh my God it’s a chore to change my sheets and I’m a cleaning fanatic and germophobic..but I can’t do what I use to do.
I have all PPE but I’m so frightened of this Virus and now Florida is the worst in the Country.
I know I have sleep apnea and my husband had it when he was alive and I said no way will I,ever wear that…but THEY said you can just wear the oxygen that goes in your nose..I am an insomniac so the oxygen even in my nose I don’t know how I’m going to sleep….but it will help with the shortness of breath.
I’ve been coughing a little and wheezing a little.
I have severe Scoliosis so I can only sleep on my left side.
What medicine do you take for shortness of breath If you don’t mind me asking?
Liz do you have any ear problems?
Please take care you and your husband and both of you stay safe and I hope you both feel better!????????
Sincerely,Irene A. -
@irene I was treated for sleep apnea and had central and obstructive combined. Something that really helped me was my BIPAP machine which is slightly different from the cpap that most use with apnea. The BIPAP acts more like a ventilator providing support for both the inhale as well as the exhale. My breathing ended up getting to the point where when I felt like I needed relief I would use the machine even during the day as directed by my PH doctor.
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@auntlizzie really good point about the gastric reflux! I had worsening of this when I would lay down at night when I was having really bad GI issues and the bipap seemed to aggravate this. Something that I learned to do is sleep with pillows and more propped up. The beds that adjust the height of the head really are super expensive. There are body pillows that people can puchase online for beds to allow it to provide some type of support while giving comfort too.
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Hi Irene, I am in New Jersey. I also have Severe Sleep Apnea, COPD, as well as Hiatal Hernia. both are a problem sleeping. First let me tell you that they can do remote Sleep Apnea test, they are a little less accurate, but they do exist. I have a mechanical bed, I put the back up and the knees up, this also takes the pressure off my back, with sleeping somewhat sitting up I don’t need the BIPAP or CPAP machine which I couldn’t tolerate.
I take Sildenafil for the PVH, Cartia for Heart Failure, Losartan for High BP, Lasix for Water Pill, Oxygen 24/7, Nebulizer with Ipartropium & Albuterol 2x daily, and a bunch of other stuff that is just too boring. When this terrible is over and they have a vaccine and proper treatment we all can go out again, till than stay in have everything delivered, and stay safe. You need to fine proper doctors, it is hard, but they will get you on the meds that are right for you, until that happens try even sleeping in recliner. I don’t if anything is of help to you, I hope so. Stay safe. -
Medicare will pay for an in-home sleep study and if she has part B some of her other expenses. A blood thinner and Lasix will help with fluid retention and clots. She would benefit from having an advocate. Good luck, and prayers for your healing
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Just want to thank everyone for diving in and responding to Irene. I love how we all support each other here.
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Hi again Irene, Firstly, no I have no ear problems. Now, when I started using an oxygen concentrator I found the noise disturbing, but I’ve put the machine out in the hallway and around a corner, with my green tube draped around the bedroom to reach me. The nose cannulas are not too bad if you angle them just right for you. I find that I put them up my nose, point them outwards, and drape the tubing sort of up and over my cheekbones. This cold weather (here) I pull all the loose tubing into bed with me to keep it warm, otherwise the cold air going up my nose is disturbing. As for sleeping positions, I find that if I occasionally have a problem with post-nasal drip congestion, I might need to sit up to get to sleep – the PND is caused by my meds. My cardio says nicely, I am ‘a wierd one’ because I have twice been diagnosed with severe PH, but my body and heart seem to have accommodated it and most bits work well… I don’t know what else to tell you – it is an uncomfortable thing to have PH and all the add-on conditions, then have to use meds that may or may not help. Chin up – we’re all with you in spirit.
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Hi Irene, I’ve had PAH for the past couple of years. I’m sorry to hear you are having issues. I encourage you to see your doctor. There are many treatments that can help. Cpap for sleep apnea helps so much. It’s amazing how much a good night sleep makes you feel better.
Your hearing issue may be as simple as a wax plug. So seeing a doctor may fix that right a way.
Even with the Covid virus issue you need to seek the medical help you need. I have found the physician office clean, masked employees, and no waiting. If you call your doctor they will advise you if a phone appointment or in person visit is the best route to take. Starting treatment is the best thing you can do for your health and well being.
Wishing you the best .
Gayle
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