Does anyone here have Pulmonary Hypertension by any chance?

[Gingergrrl]

Thanks Gingergirl. It seems I will have to go to A&E and hopefully get fully tested there.

Best wishes and hoping it all goes smoothly for you.

Yes, I find it very uncomfortable lying down, do you? And talking lying down is so exhausting.

We are the exact opposite in that I breathe completely normal lying down and even sitting but I cannot breathe when standing at all. I can only walk a few minutes or a few feet without wheelchair or I get complete breathlessness as if I ran up a flight of stairs and pushing it leads to chest pain. Some days are better than others but this is my baseline about 95% of the time.

I hope you haven't got PAH but I know what you mean in that it would be great just to get an answer for what it is and then start the right treatment.

Agreed. This has been the bane of my existence (breathing) for the last two years until I got severe MCAS. Now that my MCAS is dramatically better and I can eat and no longer fear anaphylaxis, I am tackling this breathing issue with everything in me.

I would appreciate hearing how you get on, but no pressure to do that though.

Absolutely, we will keep in touch about this but no pressure on your end either!

 

[rosie26]

Best wishes and hoping it all goes smoothly for you.

Same

We are the exact opposite in that I breathe completely normal lying down and even sitting but I cannot breathe when standing at all. I can only walk a few minutes or a few feet without wheelchair or I get complete breathlessness as if I ran up a flight of stairs and pushing it leads to chest pain. Some days are better than others but this is my baseline about 95% of the time.

I get the POTS breathing problems while standing as well. So I get both, standing and lying down. The lying down breathing problems must be another problem apart from ME for me. I don't know.

That is interesting though, that your breathing is ok lying down. It sounds like we don't have the same thing going on.
Unless we have variants of the same thing .

Absolutely, we will keep in touch about this but no pressure on your end either!

Great.

 

[Gingergrrl]

Rosie, just wanted to update you that the nurse from my cardio's office called me back re: the abnormal results on my Echo (the 34 mmHg peak pulmonary artery pressure.)

He said it was "Not abnormal" for a peak pressure and that this is separate from the Mean/Average pressure. I asked him what my Mean/Average pressure was and he said he did not know b/c the machine did not record it! He said it only gets recorded if the Peak Pressure if over 40 mmHg and mine was 34 mmHg. I also asked him if my Peak Pressure was during the supine or the standing part of the echo but he said this also was not documented so he did not know.

Overall, I believed him to be telling the truth as best he knew it (and he is not in the same office where I had the Echo) but it did not convince me that I do not have PAH as 34 mmHg is still a high pressure. Granted it is not 60 or 80 but it is still elevated. I hope to get a much more precise answer at my pulmonary appt later this month.

 

[rosie26]

Rosie, just wanted to update you that the nurse from my cardio's office called me back re: the abnormal results on my Echo (the 34 mmHg peak pulmonary artery pressure.)

He said it was "Not abnormal" for a peak pressure and that this is separate from the Mean/Average pressure. I asked him what my Mean/Average pressure was and he said he did not know b/c the machine did not record it! He said it only gets recorded if the Peak Pressure if over 40 mmHg and mine was 34 mmHg. I also asked him if my Peak Pressure was during the supine or the standing part of the echo but he said this also was not documented so he did not know.

Overall, I believed him to be telling the truth as best he knew it (and he is not in the same office where I had the Echo) but it did not convince me that I do not have PAH as 34 mmHg is still a high pressure. Granted it is not 60 or 80 but it is still elevated. I hope to get a much more precise answer at my pulmonary appt later this month.

Well that does sound like good news for you but you need further assurance. I hope it is ruled out for you. Feel free to use this thread for your recordings of tests to rule out PAH. I don't know if you have a thread already, I can't keep up with all the threads these days. I don't mind at all if you would like to do that. Good luck with the next appointment and let us know how you get on.

 

[Gingergrrl]

Well that does sound like good news for you but you need further assurance. I hope it is ruled out for you. Feel free to use this thread for your recordings of tests to rule out PAH. I don't know if you have a thread already, I can't keep up with all the threads these days. I don't mind at all if you would like to do that. Good luck with the next appointment and let us know how you get on.

Thanks Rosie and I do not have a thread specifically on this and do not want to hijack your thread but wanted to share the info. If a very kind person had not told me where to look on my Echo for this measurement, I would never have known about it myself.

I didn't really take it as good news to be honest b/c my cardio's office also told me another scan was normal which turned out not to be. But if my upcoming pulmonary appt orders a better Echo with all the measurements and tells me it is normal, I will feel reassured then.

 

[rosie26]

I started taking a half a tablet of multivitamin and B complex yesterday. See if this helps any. I have been taking 5mg of cetirizine for the last 4-5 months, that helps a little, I think. It certainly is making me sleep in longer in the mornings.

 

[rosie26]

I had two very small and unusual skin eruptions in the month that my lungs blew up. I had never had them before that I can remember. One appeared on the side of my left upper thigh and the other on my lower right forearm. They had the feeling of hardness as the 'quick' you get at the side of a fingernail and it hurt to touch just the same as when you have one those quicks. I feel sure it was connected to the major flare up of my lungs and disturbances that caused the lungs to flare. Anyone have any ideas?

 

[Gingergrrl]

@rosie26 just wanted to let you know that I see pulmonary doc later this week and should find out more re: PAH and will let you know what happens.

Am also bumping this thread in case anyone else knows the answer to your skin questions (which I don't!)

 

[rosie26]

@rosie26 just wanted to let you know that I see pulmonary doc later this week and should find out more re: PAH and will let you know what happens.

Am also bumping this thread in case anyone else knows the answer to your skin questions (which I don't!)

All the best for the end of the week Gingergrrl and that you get a clearer assessment of your Echo measurements. And thanks for the bump. I need to go and have another look at images on the internet and see if I can find any similar pictures of the 'weird skin thing'. I'm not keen on looking but I will.

I haven't had them again, it was only during that major lung flare. It must mean something and it could give me some interesting answers perhaps. I feel sure there is some kind of connection. Maybe my body was producing too much of something and it came out in my skin as well at the time.

 

[SGR]

@rosie26 I registered so that I could share with you information about mastocytosis which may be at the root if not confluence of your symptoms. It's also possible that you have histamine /tyramine intolerance. I am only just learning about this so I'm not sure what the difference is between those, they look the same to me. Histamine is released when cells are damaged is my understanding.

I had a major hypertensive crisis for the first time a few weeks ago. I am dealing with toxic mold exposure compounded by my chocolate addiction. Turns out nearly everything I was eating is on the histamine /tyramine do not eat list. I so far do not have skin issues, but rashes are one of the symptoms. Hmm, I think I was also reacting to the blue dye on Valtrex.

The Mastocytosis Society of Canada seems to have the most informative website.

I hope this helps steer you in the right direction.

S.

 

[Gingergrrl]

The Mastocytosis Society of Canada seems to have the most informative website.

Just wanted to agree @SGR that the Canadian Masto society website is phenomenal and also the TMS for a cure site (in case this is helpful for Rosie.)

 

[rosie26]

@SGR Thanks so much and great to have you here. Big welcome.

This thing that I have going on with my lungs and heart is a strange thing. There does feel like a kind of hypertension there mixed with some kind of histamine sensitivity with heat causing a blow up situation. And all this is mixing in with my ME neuroimmune symptoms and not to forget hormones as well. It's all just charmingly lovely and complex, just what my ME brain fogged head needs - lots of complexity.

I am taking an antihistamine but it doesn't feel like it is hitting the mark very well, if at all. I feel like I need something else, what I don't know. I am also feeling prone to oral thrush now which I have never had problems with ever until now. It's as if my immune system has become weakened in a new direction.

Thanks very much for the website, I will see if I can find some answers there and if it sounds like what I have.

I noticed a week ago when I made myself some cheese on crackers that my lungs felt like they flared up. I hadn't had cheese since last year when I was really sick so I think it might be a food that triggers what ever I have. I haven't heard of tyramine intolerance (I probably have but have forgotten) but will definitely find out what that is about. It would be interesting to see if tyramine is connected to cheese.

 

[rosie26]

I had a major hypertensive crisis for the first time a few weeks ago.

These crisis are scary things. I also had a major crisis last year and I didn't think I was going to survive it. What sort of symptoms did you have during your hypertensive crisis @SGR ?

 

[SGR]

Hi, @rosie26, sorry for the delay in my response; my tech skills leave everything to be desired! Boy, that is scary, I'm sorry you went through that.

I had strange pulsing sensation in my legs for weeks, had a very strange incident where I could hear my heart beating, extant, as they say. Then one day I lost my vision, twice for a total of five minutes and about an hour and a half later after my husband took me over to our moldy house for a brief visit, my heart was pounding, 165/69 I called an ambulance - so didn't want to lose my vision. ER tested for stroke a heart attack, I was crazy dizzy, chest pain and pressure. Sent me home with stroke info, two days later, crashed again, called ambulance, BP 196/110, lost hearing while talking to 911 operator. EMTs talked me out of going back to ER on grounds they wouldn't treat BP, ironically my husband was at urgent care with son, he came home and took me to urgent care. They put me on Metoprolol, which I don't like, but here's the catch - I can't get primary care to save my life, so to speak. Small town, no docs, certainly no docs that can help me. So stuck with till early May when I see new PCP.

BTW my husband gets those rashes and reacts very badly to alcohol. Talk about a red face!

What were your hypertensive symptoms? So glad you made it through .

 

[SGR]

Oh my gosh, @rosie26, yes, cheese is related to tyramine. Aged food is not our friend.

My poison is chocolate. I lost my vision the first time on February 14 about 5 years ago, now I know why. Lost vision in response to contrast solution (dye), and Botox (turns out it's fermented). Did any of the doctors tell me this? No, they just refuse to treat me.

I'm beginning to think we all need to live in one place in order to help doctors get up to speed on this unbelievably complex, as you say, illness. You are all welcome at my house.

 

[rosie26]

Hi, @rosie26, sorry for the delay in my response; my tech skills leave everything to be desired! Boy, that is scary, I'm sorry you went through that.

I had strange pulsing sensation in my legs for weeks, had a very strange incident where I could hear my heart beating, extant, as they say. Then one day I lost my vision, twice for a total of five minutes and about an hour and a half later after my husband took me over to our moldy house for a brief visit, my heart was pounding, 165/69 I called an ambulance - so didn't want to lose my vision. ER tested for stroke a heart attack, I was crazy dizzy, chest pain and pressure. Sent me home with stroke info, two days later, crashed again, called ambulance, BP 196/110, lost hearing while talking to 911 operator. EMTs talked me out of going back to ER on grounds they wouldn't treat BP, ironically my husband was at urgent care with son, he came home and took me to urgent care. They put me on Metoprolol, which I don't like, but here's the catch - I can't get primary care to save my life, so to speak. Small town, no docs, certainly no docs that can help me. So stuck with till early May when I see new PCP.

BTW my husband gets those rashes and reacts very badly to alcohol. Talk about a red face!

What were your hypertensive symptoms? So glad you made it through .

Thanks @SGR and no hurry to reply. Really helpful to hear your symptoms and I can see how scary that would have been for you. Losing your sight and then your hearing! I have been noticing my eyesight has deteriorated over the last year, just seems a bit more blurry at times.

I am going to a different doctor this week to get some forms signed and I will bring up my concerns about hypertension and see if I can get somewhere with her. I don't know if you know the answer to this question @SGR and that is does hypertension show up on a chest xray? I will do another post on that.

 

[rosie26]

What were your hypertensive symptoms? So glad you made it through .

I don't really know if I have hypertension. I feel hyper though. I really appreciate hearing what your symptoms were.

I think my eyes need testing and could tell the tale more whether I have hypertension. Also my chest feels tighter and I have unusual heat that is like having a radiant heater on throwing out heat at the front and back of my chest. But that heat could be another problem altogether apart from hypertension, it may be a mix of autonomic-hormones.....

 

[rosie26]

Oh my gosh, @rosie26, yes, cheese is related to tyramine. Aged food is not our friend.

Yes, I looked it up not long after and saw that it was. I wonder if I have a calcium regulation problem of some sort.

My poison is chocolate. I lost my vision the first time on February 14 about 5 years ago, now I know why. Lost vision in response to contrast solution (dye), and Botox (turns out it's fermented). Did any of the doctors tell me this? No, they just refuse to treat me.

Chocolate is one of those foods you don't want to have an allergy too. The first time you lost your vision was for another reason other than hypertension? Or do you think you may have had hypertension back then as well. Can allergies cause arterial hypertension?

I'm beginning to think we all need to live in one place in order to help doctors get up to speed on this unbelievably complex, as you say, illness. You are all welcome at my house.

I've never been in a study for ME. If I had the money I would take the risk and travel overseas and get some immune testing done. I can't get the kind of immune system testing here that you can get in the US.

 

[SGR]

@rosie26, that'sounds an interesting question about hypertension and my early vision loss. To my knowledge what happened a few weeks ago was an extreme first. Up to this point the histamine/tyramine issues "only" included spontaneous blindness, no elevated BP.

The autonomic symptoms make figuring all this out, difficult don't they? Although the ER doctor determined that I have orthostatic intolerance, so it could be part of this whole thing.

Sorry you won't be coming to live here , but more sorry you can't get the testing you might need.

 

[SGR]

@rosie26, I had to think about your question about allergies and hypertension. My guess is your typical allergic reaction is histamine which would cause low blood pressure. My super itchy eyes and runny nose are my histamine symptoms i think. The tyramine build up causes the hypertensive crisis.

Also, nothing showed up on the chest x-ray the night I went to the ER. If you have heart disease they can see that on the x-ray.