Chest Pressure?

[E246]

Having got the chest pain and adrenaline surges under control, over the last few days have had awful chest pressure. Don't feel quite well and it's pressure and burning and slightly short of breath. Got up in the night with it and was still there this morning.

We were 30 miles down the motorway going for a few days away and had to turn back, just felt too ill with the constant pressure, just didn't feel right.

My very patient husband took me to the doctors who says he doesn't know and we are waiting for the inpatient appointment at a London hospital. We talked about trying and SSri.

So am sitting back at home having taken time of work and been scanning the site for answers as usual.

Ant ideas what causes this?

Thanks

[HopeSprings]

Yes, this is a constant problem for me, most of the day, everyday. I wish I had answers for you (and myself) as to WHY. I'm wondering lately if this is actually gastro related and not always heart/chest, but just feels that way. Thinking of trying Prilosec or one of those to see if it makes any difference. Hope you get other responses because I'm curious too.

[Elfie]

Chest pressure like someone is sitting on your or inflating your chest cavity from the inside with a compressor?

I get both. No reason so far as I know. Just another uncomfortable sensation.

[lalalisa]

I get this as well. It is the worst when I'm physically more run down or more fatigued than usual. It seems to be accompanied by shortness of breath as well but I do distinguish them both as separate symptoms as one is sometimes better or worse. I wish I had answers for you as well. I find these mysterious symptoms to be some of the most difficult. If I have a clear explanation it's easier to tolerate. Just wanted you to know you aren't alone!

Lisa

[bellgirl]

Look at the Chest Pain topic that was posted. There are some articles and explanations there...many responded to that, as well. You aren't alone, like Lisa said. I think we all have it...even after having stress test, echo, EKG, Holter monitor, etc....I just have a mitral valve prolapse I believe it is just the way it is...possibly even spasms in the heart, possibly vessel related...not sure

[E246]

Thanks,

That's really reassuring to know. Has anyone found anything that helps - poised to try ssri but would prefer to stay on natural route - got the article about Butchers broom and wonder if anyone else has tried this. So disappointed with the doctors here -they do not seem to test for anything and can't cope with one day you are well and the next you are not. They seem to think you are making it up. I can cope with not walking well but not this pain. I took valium today but it didn't work - in fact it made my heart go irregular and that started an adrenaline surge, got that under control but 24 hours of chest pressure and hoping we can travel tomorrow.

[abnel]

Emma, constant and severe chest pressure was my worst symptom for the first 18 months of POTS, but it has improved over time, even before I started salt tablets and florinef. I also got the shortness of breath with it which seemed to be CAUSED by the chest pressure. Now things have reversed and the shortness of breath is my worst symptoms and the chest pressure isn't anywhere near as bad.

Elfie, my goodness, you descripe the pressure so well, like no description I've heard before! At my worst, I seem to get both the elephant on the chest and the inflating chest cavity from the inside feeling all at the same time. I went to work like this every day for 18months and was never comfortable sitting at my desk, constantly fidgetting the whole time, craning forwards, leaning back, etc. I tried doorway stretches (hanging inside the door frame with arms extended doing a superwoman impersonation) and that seemed to help temporarily.

[E246]

Anyone know - Does it coincide with BP increase? Does it fit with pulmonary hypertension?

Also since the post last week it has become daily and seems to coincide with hr fluctuations- up and down all the time?

Thanks it is easier knowing you are not alone with a weird symptom.

[E246]

And could you work when you felt like this or did it accompany feeling ill / not right generally? I feel knocked for six with it and find it hard to keep a conversation up.

[anna]

This is how I get when I am having a run of PAC's, did you say you are hyper POTS?!

[E246]

I wish i knew. I was told i was then another doctor said it hadn't been proved and another doctor did the wrong test and now i am on Fludrocortisone i am not so symptomatic with the storms or surges so i have 24hour collection tubs here but haven't done the test. But I assume i am.

This chest pressure comes with a sense of "dis-ease" and uneasy discomfort in my body and i feel not well. Sometimes it seems my hr goes slow and then it stops for a few seconds and i go light headed and then it starts suddenly very fast -119 today after dropping below 50. I had a tape before xmas but was really good on the Fludro so it did not really catch anything except for a short svt run which they caught once before.

I have watched your posts Anna - really interested in any comments. I am struggling a bit with very nice doctors but nothing ever seems to get tested and i don't seem to be getting any further forward.The initial effects of the fludro have worn off and i am feeling like this daily again - but it is not as bad as the full blown surges. But i have 2 months to wait for another appointment and my gp has no understanding.

[anna]

Emma did I get it right are you in the UK? Are you due to see Prof. M and his team? Do you live anywhere near Bristol? Oh so sorry for the lot of questions.

[E246]

Anna, Yes i am in north of England and am waiting to see Prof. M but it is a long wait for an in patient appointment. Had tests in London and was quite well at the time but am now on emergency list. Do you have experience of that dept. I really like my consultant here in NE but asked for second opinion when i collapsed in London. Also feel like it took 14 months to get tried on Florinef and still suffering with daily chest pain/pressure etc. and nobody does any tests. Haven't even had a stress test, got one in London and then they misplaced results so didn't find anything out. I still get the feeling nobody's quite believing me even though I have been diagnosed properly. I feel like i am being expected to suffer with chronic chest pain when there are still a whole range of tests and drugs that might help. The florinef's initial good results have worn off. Am i being unreasonable in thinking i should be able to get this under control?

What's your experience?

[anna]

I have not met Prof. M or his team, my daughter was referred to him but she was just starting UNI so she had to give up her place as she could not give up the week or so for travel testing and so on, my boys had been referred to him but our cardio found out they are to young to get on his list at the mo as they are only 16 years old.

I have heard good things about a Dr. in Bristol I think one member here has mentioned his name but I do not recall it at the mo sorry.

It is a big pain if your local consultant can not do the stress test there, have you had an echo, event, monitor and such like yet?

Well it took quite a long time to get somewhere with my children's ANS stuff, but we seem to have hit upon a DR. locally (Devon) that has an interest in POTS and ANS dysfunction, he consults with Prof. M so that is very helpful.

I do not think you are wrong to want to find out what is going on with you it is also horrid not being taken seriously.

Did you find that your chest pain has got worse since being on BB's I could not function on any of the BB's I was put on, felt like an ton weight was pushing on my whole body when I moved it was such an effort to do anything when on them. I have found I have done better on Calcium Channel Blockers.

[E246]

Thanks Anna, you are really helpful. I don't have time to do all the research and am really trying to get up to speed, I am holding work together and 4 children and grand child.

Not on BBs as HR tends to drop too low. Did take CCB but these did not do much and then i tried them again before xmas and had a really bad reaction - my family took me to A&E. Midodrine made BP too high. Given that i am in pain and have a lot of surge type discomfort so much of the time I want to try and get some way of managing this. I can cope with the not being able to walk and other things - you just need to be inventive - it's the pain that wears me out.

Can i ask who the GP is you see in Devon? I have some family down there - 2 GPs and haven't seen for years. PM me if you prefer.

[anna]

Emma have you had tests to rule out pheo?

http://www.medicinenet.com/pheochromocytoma/article.htm

I have PMed you the Dr.'s name ok.

[E246]

Yes about 4 years ago when the pots was undiagnosed and then earlier this year but it was during a period when i felt okish - it was a 24 hour test. Prof M said it should be a standing test but i haven't had this. I was told i had hyper pots then later the same doctor said it was not proved, I do not think there is much experience of hyper pots where i am and there still seems to be suspicion that the surges are panic attacks. I have now requested to see a medical psychologist on the advise of a doc friend who i have known for years who doesn't think any of this fits a psychological pattern - i don't really need telling this though -and i am looking forward to getting an account on my record that reflects what i have been through and hopefully it might lead to more thorough testing or more drugs trials to help alleviate some of the symptoms.

Thanks for pm - no that was not my family - just a long shot.