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Good article - where do you find them? There is a natural sugar a doctor told me about that you can buy from The York Sugar Cures - called Xylotene. It is good as a mouth wash, for ulcers, for gum disease and kills bacteria. Tastes like sugar. Might be a good alternative especially for children. I don't have sugar in the house but was advised to use this as a mouth wash.

Yes - sorry you get this. There are a couple of current posts about hest pressure and chest pain. No doctor has told me what causes it but lots of potsies get it. You are not alone. Let me know if you find out what it is.

Thanks Julie, that's really reassuring. They don't make me panic but they make me feel ill.

Lemons - how high does your hr go? Maybe as it starts so low it won't go that high.

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.

Yes, they are like storms. My arms and legs sometimes go weak and heavy but not stiff. i shiver afterwards which i am sure is a sign that sdrenaline has been released. I was told either propranolol or valium. Valium were quicker so i have stuck with them. Hope it doesn't happen again.

Clicked other as the adrenaline surges and irregular hr cause a real sense of "dis-ease" like i cannot relax. These can go on for hours and althought the medication has helped , I still get the surges and they are still disturbing , but just to a lower level.

Great - it's a relief when you are symptomatic at an appointment. Really interested to know what they say.

I can't take BB's as my hr is often in 50's and can drop lower. Recently it has gone slow and then seemd to stop for a few seconds and i go very light headed before a sudden fast rate. I would be really reassured if anyone expereinced anything similar. Never seem to catch it on a tape.

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.

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.

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.

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

Hi,

I tried alpha lipoic acid with acetyl l carnitine today and had chest tightness and high blood pressure. This sometimes happens with green tea and wondered if anyone else had this effect. I think they both have an antioxidant effect.

Any idea?

I think the biggest stress is not being believed - I was humiliated and labelled because nobody knew about the syndrome. I was wrong not their knowledge so I find what you are saying really worrying. I deal with loads of stress happily in my life but when the adrenaline surges start - that physiology not psychology.

I have found valium works quicker than BB's. Only need to take 2.5mg and only when it happens. The Fludrocortosone also stopped them happening or not to the same degree.

Maybe some of the symptoms -chest pressure and tension are due to raised bp rather than high hr. But am not sure what is causing that?

Hi,

Interesting - is it a herb?

Was just about to start post to see if anyone else knew what can lower blood presssure -I think it is a big contributor to the chest pain and time is going quite high even on only 1/4 dose of Fludrocortisone.

Do you have high BP? I presume it is what stops the dizziness which is not one of my symptoms but it's not good.

Serbo, Have you been diagnosed for Mast cell disorder?

Sometimes i feel like i am the only person on this site who has no tests done so am still not sure quite what is causing my problems or what type of issues are causing the complications in my pots. The doctor last month said - we can only treat the symptoms - the research will be done in America. I think males with these chest pain problems are less likely to be suspected of psychological problems.

Can you tell me what things you have been tested for regarding the chest pain etc. I have had the usual ecg/echo/chest xray. I was told that the chest pain was neither pots nor cardio by a very unpleasant cardio doctor who knew nothing about pots. Was also told by another pots doctor that it was normal to cope with the ups and downs of adrenaline as though i am a neurotic housewife. I explained that I run a dynamic expanding design company and am used to dealing with stress effectively. And rather than being overly focused on my health i am trying to work at a job i love and find it hard to have time to keep up with the research on this site which I think this site is brilliant and seems the only chance i have of getting any answers.

I still do not know what secondary issues may be causing my problems. Sorry -a bit of a rant but feel i am wasting time when i could be finding more tailored treatment and having less problems.

Thank

Chest pain is quite a common and unexplained symptom It is my most disabling symptom and no one has given me a satisfactory answer why yet. I have even been told by cardio that it is not pots as on a bad day it continues even when lying down and can go on for hours. I think it may be related to elevated BP sometimes. But in cardio terms there is nothing wrong, thats why it is dismissed. let me know if you get any answers. Good luck.

It seems if there is no dardio reason for the pain then it is dismissed. Still wondering if it is due to autonomic neuropathy. Not even sure i know exactly what this means but i think thee has been some damage to the nerves in the chest/heart region. Quite often my hr is ok but i still get chest pain. I never ignore it but perhaps i should.

You're not alone - it's awful. I usually get a heat rush then the tachycardia. Its more controlled now with the florineff but before christmas it could go on for hours. My hr would go from 60 to 125 just sitting or lying. then it would spike up and down like Issie's does. During one of these episodes we tried taking my bp four times over the course of an hour and it would not read -i presume it was too high. And thats what it feels like for me- like my chest is going to explode.

It's the worst thing.

Sorry Rama - here's another two - Diltizem a calcium channel blocker and Ivabradine. The first eased my symptoms initially and then made them worse until i had a severe reaction. The Ivabradine which i know is not available in US gave me worse chest pain. Would be interested to see how others got on with it.

Hi,

Serbo - i get chest pain from standing or walking or being upright which is a type of exertion if you have pots. My doctors just says they understand it happens but cannot explain it. As a man i think like Rama said your symptoms are taken more seriously and in the US there seems to be a lot more testing. I was told i would have a stress test from the beginning but later told it would make me too ill and so it would not be done.

So i still have unexplained chest pain that stops me and no answers. So would be very interested to know if you get any further. I have in my notes that my chest pain is not cardio and not pots - but not from someone who knows about pots. I think this was because it continued even when i was reclining - but after a bad episode or too much exertion it does last.

Bit frustrated with lack of interest by doctors as much as anything. Keep me posted and good luck trying to get more answers.

Coconut water? Does it have high potassium?

Hi Serbo,

I wrote that post a year ago and i still do not know what causes the chest pain. My doctor still admits they do not know what causes it but it is common with POTs

Sometimes it is sharp and others it is like intense pressure and i think my BP is probably spiking. It gets worse as I stand for long or exertion.

You might get a 24 hour BP monitor and of course an echo.

I have started taking a quarter tablet of Fludrocortisone and for the first time have seen a massive improvement in my symptoms. So maybe it is to do with hydration.

Hope you can get it sorted out - it is always worrying when you get chest pain. If it is a new symptom get it looked at.

Can I just check - Florinef works if your angiotensin is low?

Hi Abbyw-goodness it is frustrating when no one believes you and you have to test in an exact way for anyone to take you seriously.

I have been diagnosed with pots but was tested on beta blockers initially and it so did not get confirmed.

I wrote a post about this over the weekend and the problem of being tested on drugs and the subsequent suspicion.

You are the expert on your health - be persistent and trust your experiences and say them clearly. Good luck.