Does anyone here have Pulmonary Hypertension by any chance?

[rosie26]

I had to go to the A&E/Emergency room today. I woke up in the very early hours of this morning with a gripping pain in my heart area and also the same pain was in my bottom jaw/teeth as well (weird). Never had that kind of pain before and it felt like the real deal heart attack thing. It all happened quickly and subsided after about 1 & 1/2 minutes.

There's nothing like telling the doctors at A&E that you have chest pain - I was taken straight to a bed and the doctor and nurse were there smartly. They put me on a heart monitor for a couple of hours and I had a chest x-ray and bloods taken. All tests came back normal. Everything is always normal.

My lungs and heart don't feel good. It has to be the autonomic part of the nervous system causing me major problems here. I need to try and find someone who is knowledgeable in treating the autonomic nervous system. I have to try something, this isn't improving any and is very concerning.

 

[Gingergrrl]

@rosie26 Am sorry to hear this and hope you are feeling better today? Did the ER do an EKG or echo besides the X-ray and blood work? Will this get you a follow-up appt with a cardio? Keep us posted.

 

[rosie26]

@rosie26 Am sorry to hear this and hope you are feeling better today? Did the ER do an EKG or echo besides the X-ray and blood work? Will this get you a follow-up appt with a cardio? Keep us posted.

Thanks @Gingergrrl. Yes they did an EKG. I had over 10 of those electrodes placed all over my chest and I noticed they placed one each side down the inside my lower hip bone, also up around the collar bone. I was finding them everywhere when I got home. They were on for 2-3 hours. I didn't have an echo though.

The doctor said my heart chambers sounded fine and blood travelling through as they should, no heart murmur. I was worried they might think I was too young for a heart attack and not do much in the way of testing. I actually told him that and asked him if he would make sure to have a good look while I am here. He understood what I meant and agreed and treated me really well and gave me lots of smiles. LOL. I don't really look sick at the moment. And just to prove I don't look sick, a hospital orderly said to me " you look too good to be here"!!!!

The doctor said if the pain comes back they will refer me to cardiology for more extensive tests. I can't remember what those were.

 

[2Cor.12:9]

As usual I am trying to figure things out. I have something going on with heart and lungs. I am going to the doctor in the next week to ask if I can get a specialist referral.

I know pulmonary hypertension is serious and I need to get on to it if that is what I have.
I just want to know what tests they would test me with for this. Can a GP diagnose it or do I need special tests for it. Also, what are your symptoms like if you have it? And what are you taking for it? Many Thanks.

@rosie26 - Hi Rosie - I just had an echocardiogram yesterday and the results were posted on my Medical portal stating that I have Mild Pulmonary Hypertension. I've had heart palpitations and an arrhythmia for years and have had cardiac work-ups in the past that were okay. Not now apparently. But then I am in my late 60's and have had ME/CFS for over 30 years.

I'm waiting to hear from my doctor so I can make an appointment with the cardiologist. The past 3 years I've been having what thought was a severe ME/CFS relapse- spending a lot of time in bed again. But I've also had shortness of breath when I try to do minor household chores. Who knows? Maybe the old ticker is causing more of my heavy fatigue and other symptoms than the ME.

I'll let you know what I find out. The Internet is good at scaring us to death about PH, but I'm trying to chill out and wait to hear what the doctor has to say.

I hope you are feeling better.

 

[Gingergrrl]

I just had an echocardiogram yesterday and the results were posted on my Medical portal stating that I have Mild Pulmonary Hypertension. I've had heart palpitations and an arrhythmia for years and have had cardiac work-ups in the past that were okay. Not now apparently.

I am sorry to hear this and hoping you will update this thread and keep us posted when you learn more info. I've had many experiences of seeing my test results on a Patient Portal before my doctor has even seen them and sometimes this has been scary (and other times helpful).

I'm waiting to hear from my doctor so I can make an appointment with the cardiologist. The past 3 years I've been having what thought was a severe ME/CFS relapse- spending a lot of time in bed again. But I've also had shortness of breath when I try to do minor household chores. Who knows? Maybe the old ticker is causing more of my heavy fatigue and other symptoms than the ME.

Have you had a spirometry or pulmonary function test and if so, what did it show? I hope your cardio can explain what is going on and how to proceed. Best wishes to you.

 

[rosie26]

@rosie26 - Hi Rosie - I just had an echocardiogram yesterday and the results were posted on my Medical portal stating that I have Mild Pulmonary Hypertension. I've had heart palpitations and an arrhythmia for years and have had cardiac work-ups in the past that were okay. Not now apparently. But then I am in my late 60's and have had ME/CFS for over 30 years.

Hi @2Cor.12:9 Thanks for posting and sorry you have this too. I hope they can give you some kind of treatment to help stop any progression.

I'm waiting to hear from my doctor so I can make an appointment with the cardiologist. The past 3 years I've been having what thought was a severe ME/CFS relapse- spending a lot of time in bed again. But I've also had shortness of breath when I try to do minor household chores. Who knows? Maybe the old ticker is causing more of my heavy fatigue and other symptoms than the ME.

I was the same a couple of years ago but still get some of it. I can't do as much sometimes without breaking out into a hot sweat and overheating.

I'll let you know what I find out. The Internet is good at scaring us to death about PH, but I'm trying to chill out and wait to hear what the doctor has to say.

Yes, I could barely stand to read up on PH. I was so sick at the time and it scared me as well. I think we can live a lot longer by careful management from what I read briefly in other forums.

I hope you are feeling better.

Thanks, I am a lot better than I was but it took a long long time to improve. I need more investigation in so many areas. respiratory, colonoscopy check. I think I also need an endoscopy also. I wish I had been able to keep my private health insurance going.

Thanks again for posting, it helps us all to go through your experience with you and learn more ourselves. I will be thinking you and let us know how you are with updates. x

 

[2Cor.12:9]

Have you had a spirometry or pulmonary function test and if so, what did it show?.

Thank you @Gingergrrl - no, I haven't had those tests. We are working on my referral to a cardiologist here who specializes in PH.

 

[2Cor.12:9]

Hi @2Cor.12:9 Thanks for posting and sorry you have this too.

@rosie26 - Thank you. Did you get a firm diagnosis of PH? Mine showed up on the echocardiogram along with a left ventrical problem, but they say the gold standard is the cath.

These patient portals are both a blessing and a curse. It seems the doctors are so overbooked that it takes them forever to follow up on the results. I called the cardiologist myself and they have requested the referral for me. Kinda backwards, but the squeaky wheel.... ha!

 

[rosie26]

@rosie26 - Thank you. Did you get a firm diagnosis of PH? Mine showed up on the echocardiogram along with a left ventrical problem, but they say the gold standard is the cath.

These patient portals are both a blessing and a curse. It seems the doctors are so overbooked that it takes them forever to follow up on the results. I called the cardiologist myself and they have requested the referral for me. Kinda backwards, but the squeaky wheel.... ha!

@2Cor.12:9 I thought I may have had PH at the time but I think what I have is a mix of things and I need to get more testing done. If I find out more I will let you know.

I'm not familiar with the patient portals but one time a few years ago I asked the lab if they would send me the results of some tests and I was expecting something in the mail but ended up getting it by email and had to go through some strange process to look at it. Maybe that is similar to the patient portal.

Ha, good idea to get your cardiologist to hurry them up with referral.There are quicker ways around things.

 

[2Cor.12:9]

@rosie26, @Gingergrrl - I saw the cardiologist who confirmed mild pulmonary hypertension. She explained that it is NOT the same disease as PAH (pulmonary artrial hypertension) which @roller mentioned. Also, even though the conclusion on my report said there was a problem with my diastolic left ventrical, she said both sides of my heart were working well. So, it's my opinion that sometimes patients who try to interpret their own reports can cause themselves unnecessary anxiety unless we really know what we're doing.

PH can be caused by many things so she's ordered an in home oxygen sleep test (as sleep apnea is one cause). So is living at altitude - which I live at.

Blood clots in the lungs can also cause it so I'll get a CT scan for that. If they find any, they just give blood thinners to dissolve them. Various autoimmune diseases can also cause PH and even just being overweight can cause it. She said there's a chance it could resolve with weight loss and exercise (though I can't really exercise with ME) And sometimes they never find the cause. So, we'll start turning one stone over at a time.

The bottom line though is that she said I would die of something else before dying of the kind of PH I have.

Hope this helps you Rosie.

 

[Gingergrrl]

@rosie26, @Gingergrrl - I saw the cardiologist who confirmed mild pulmonary hypertension. She explained that it is NOT the same disease as PAH (pulmonary artrial hypertension) which @roller mentioned. Also, even though the conclusion on my report said there was a problem with my diastolic left ventrical, she said both sides of my heart were working well. So, it's my opinion that sometimes patients who try to interpret their own reports can cause themselves unnecessary anxiety unless we really know what we're doing.

That is great news that you don't have PAH and it is much better than you had suspected. I have had experiences of reading my test results in the patient portal prior to my doctor seeing them and thinking they were worse than they really were. Did she say what your treatment would be or is it just something to be monitored for now?

 

[2Cor.12:9]

That is great news that you don't have PAH and it is much better than you had suspected. I have had experiences of reading my test results in the patient portal prior to my doctor seeing them and thinking they were worse than they really were. Did she say what your treatment would be or is it just something to be monitored for now?

No, probably because she needs to find out the cause first, if possible.

 

[rosie26]

@2Cor.12:9 So pleased to hear your good news.

 

[2Cor.12:9]

@rosie26 and @Gingergrrl - thought I'd give an update - My cardio did an overnight oxygen test, which came out low (hypoxia), so she put me on an oxygen concentrator at night. She ordered a lung CT scan which showed small nodules and bronchilolitis (which smokers get, but I don't smoke). So she referred me to the pulmonologist which I'm seeing next week.

In the meantime I saw my rheumatologist who ran a boatload of tests to check for connective tissue disease, which can be also cause of pulmonary hypertension. Thankfully, they were all negative.

In the meantime, I have started on oxygen, which has helped my energy a tiny bit, and has reduced the anxiety. I noticed that my nighttime sinus inflammation was making it difficult to get the full benefit from the oxygen. I've lived with post nasal drip and a night time stuffy nose for so many years that I never thought anything about it.
So, I'm starting on Flonase to see what happens. I'll keep you posted. Here's an article I found that linked allergic rhinitis with pulmonary hypertension via hypoxia. Makes perfect sense. I'll see what the pulmonolgist has to say.

My cardo doc will do another echocardiogram in 6 months. She said my heart was fine.

https://www.ncbi.nlm.nih.gov/pubmed/18035798

Cheers!

 

[rosie26]

In the meantime, I have started on oxygen, which has helped my energy a tiny bit, and has reduced the anxiety. I noticed that my nighttime sinus inflammation was making it difficult to get the full benefit from the oxygen. I've lived with post nasal drip and a night time stuffy nose for so many years that I never thought anything about it.
So, I'm starting on Flonase to see what happens. I'll keep you posted. Here's an article I found that linked allergic rhinitis with pulmonary hypertension via hypoxia. Makes perfect sense. I'll see what the pulmonolgist has to say.

My cardo doc will do another echocardiogram in 6 months. She said my heart was fine.

https://www.ncbi.nlm.nih.gov/pubmed/18035798

Hi @2Cor.12:9 Interesting, thanks! I've been getting the stuffy nose really bad the last 3 years and it does feel like it makes me hypertensive. I might try the Flonase as well to see if it helps. Let us know how you go with it and all the best with your appointment next week. x

Thanks for the link.