Pulmonary hypertention?

[Emfrenette]

Anyone with Crest syndrome firmiliar with pulmanary hypertension ? I have been geeting weird feelings in my chest like my heart beating slower and its between my ribs , when i feel thing i feel like i have to take deep breaths in and like im short of breath almost also i have noticed facial flushness before getting this feeling , anyone else have this happen . I have not been diagnosed with PH but i am going for a 24 hr holter.monitor this month after the holidays and im worried it will get canceled because of wonderful Covid. If anyone has any help for me ..thank you

[Poppy221]

I have pulmonary hypertension. In the first instance try looking at phauk.org/what-is-ph/ and see what matches for you. There are lots of variations.

[Poppy221 in reply to Poppy221]

Further to previous - yes I have acid reflux and also sluggish peristalsis. The symptoms I had for PAH - and note, not everyone is the same - were swollen feet especially when walking around, tired all the time, getting out of breath easily more so when walking up hill, having a break for a couple of days and feeling much better - then exhausted again as soon as I tried to do more than sit around and watch TV, coughing up a lot of mucus (but some of that was also the acid reflux). In the later stages I had a feeling like stomach ache, in a mild-ish way at the top of my stomach particularly when walking up hill - I was told by a cardiologist that this was heart strain and any time I felt it ease off - so I'd walk up hill ten paces at a time. He could also see the blood vessels in my neck pulsing and almost writhing - indicative of high pressure in the pulmonary artery.

The diagnostics were a blood test called BNP which showed heart stress enzymes, an echocardiogram which showed an enlarged right atrium and the tricuspid valve leaking, a VQ scan to see if there were any pulmonary embolisms in the blood vessels in my lungs (not) because PE are another cause of pulmonary hypertension, a chest X-ray, ECG and then finally a left and right heart catheter by a cardiologist to measure the actual blood pressure in the pulmonary artery and various points around the blood vessels in the lung. Also had a six minute walking test - walk up and down a set distance with a pulse and blood pressure monitor on your finger and see how far you can go in six minutes.

Note that when your blood pressure is measured with a cuff on your arm that is the systemic blood pressure. That is separate from the pulmonary system. Pulmonary pressure can only be measured by a left and right heart catheter - though an echocardiogram does give some hints as I understand it.

I do get palpitations, which can be fast loud heart beats, or can be a weird feeling a bit like my heart decided to shuffle its feet so to speak. They haven't caused breathlessness. Lots of heart problems can cause palpitations so it may not be PAH. You can also have palpitations without heart problems.

I am now being treated with diuretics and restricted fluids to keep my blood volume low and take strain off my heart, and several blood vessel dilators of various sorts and they have worked and made a big improvement. I already had blood pressure on the low side of average and now I am on to lower blood pressure in systemic terms. This can occasionally alarm medical people who are not familiar with PAH, when taking my blood pressure one or two have said I should stop taking medications as they are to make my blood pressure low and it is already a bit too low. I tell them firmly no and explain why. I have been lucky because for some people the vasodilators cause lightheadedness and dizziness and even passing out - but I've not had those side effects.

Just to be clear the systemic sclerosis was causing my pulmonary artery to narrow, medications reversed this.

No flushing along with the symptoms.

Does sound a bit like some sort of heart problem so hopefully the halter monitor will start indicating causes.