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Hi, Yes, i should have said "cardiac". thanks for supplying that. Spoke to Prof. Newton today and felt confident enough to ask the her about Syndrome X and Hayes Syndrome and i felt she really listened. So they are going to do an echo again. Also been give calcium channel blocker to try and improve my recovery. Then we are going to try and eliminate all the other reasons why I may have cheat pain. So i have nitroglycerine spray to see if it is cardio, plus an under the tongue stomach spasm tablet incase it is indigestion and lastly paracetamol/ ibuprofen to rule out muscular pain. The last doctor I saw suggest psychological counseling which was just not helpful. It is the chest pain that stops me doing too much and i am trying to work so it is not as though i am focussing on it. Hope this is helpful to anyone else searching for the reasons for chest pain. Always interested in any suggestions.

Hi, Thanks to everyone who replied to my earlier post on chest pain. Anyway i have been investigating it further and have come up with a condition called "SyndromeX" it seems well documented and mostly woman suffer from it. Basically it is like angina but in the very small capillaries in the chest and is not indicative of heart damage as normal angina is. So the blood flow is constricted but it can not be picked up by the normal tests for angina - which i do not think i have got as i can swim without pain. But maybe with pots the reduced blood flow in the chest when standing is like constriction in the small capillaries. Has anyone heard of this - it sort of makes sense to me. Thanks

Hi, Yes, i want to know the same thing. The last person i saw said to should carry on as normal, whether that be a 10 min walk or a 10 mile walk. It was clear he knew nothing about POTS. If i could walk for 10 mins i would be elated. I often now do not get the elevated heart rate but still get terrible chest pains and these control how much i do. I do not think you decondition that quickly - i just think they do not know. Last time I saw the the expert on POTS she told me a story about a woman who had to pick her kids up and the hill at school was really steep so she discussed with a cardio whether it harmed the heart to beat fast. They decided between them - no -Just this story itself indicted they do not know. I think if you have pain you stop. It is my big question again when i see the specialist on monday and i will let you know. Best wishes

Hi, glad you have a diagnosis. It is always a relief when everyone stops treating you like it's psychological. I am in the UK and was referred to geriatrics 15 months ago when they could not find what was wrong and wanted a general doctor. Then went through a private appointment with a CFS and Immunology Specialist. Really knew by then what was wrong but needed him to refer me to the right person. Have been prescribed ivabradine which I don't think is available in US but it gives me terrible chest pain. I have my second appointment in 10 days and was only diagnosed 6 weeks ago. I am interested in anything that might be relevant in uk. Thanks

My doctor is a pots specialist and requested that i stop the beta blocker for 2 days before i came for the test. In the early part i think it was a bit marginal but there is no question now. Not that i am wishing this on you, just it is a relief to have some answers. All the best.

Hi, My first tilt test was during a remission - i did not even know about POTS at the time. The second test - i had been on beta blockers and the test was was marginal. By the third test my pots had become full blown and it proved positive and has been ever since. hope this helps.

Hi, you are not alone. I am new - posted for first time last week and i have lots of questions too. I live in northern england and as far as i understand there are 2 -5 specialist nationally. Luckily one is in Newcastle's Royal Victoria Hospital ( Professor Newton) where there seems a good awareness of POTS. I am seeing her for the second time today - have only been diagnosed for 5 weeks. Like you I have been on HRT and have been trying to find out - if I go back on it will it make it better or is it the HRT that maybe exacerbated it. My main symptoms are fast pulse and chest pain. It all started after having a coil 7 years ago. This flare up happened in November just before the snow. I have not yet found anything that works - it seems very random. Water is the only thing that lessens some of the symptoms. A glass of wine lessens the chest pain but increases the pulse. Thought the info on another post about Hughes Syndrome is very interesting. At first glance I was not sure but then having thick blood that has little oxygen seems to make sense. Anyway - good luck.

Thank you for replies. i would love to be friends with you but do not know quite how to do it. What a relief to be talking to others. I have had chest pain all day and not been able to do much. My heart is very slow at the moment - often below 50 when i am relaxed. I think this causes pain. And the pain kicks in again at the other end sometime when my HR only at 80. Basically it seems to be there all the time. Gosh i just had an SVT whilst writing this - jumped to 154 for what felt like ages but only probably 10 seconds. It has left me feeling really shakey and sick. 2 months ago I was swimming up and down in the fast lane. I have awful neck pain too and headache at the back of the head - does anyone else suffer with this?

Thank you for your response. i have never used a forum before. I realise that my problem for years has been the chest pain. This is what has taken me to the doctors. It has been ignored or put down to ridiculous causes like hyper ventilation.Ii have never been offered pain relief. Yesterday my husband phoned the doctors asking for pain relief. As soon as you say you have cheat pain, and because no one understands pots, they wanted me to go to hospital. In hospital with this new diagnosis of pots ( 5 weeks) they really listened to me about the pain. So I tried gas and air - no good. Nitroglycerine tablet under tongue - made it worse and HR shot up. 5mls morphine helped a little then intravenous paracetamol. Unfortunately they did not give me anything for the nausea which developed as soon as I got home and I spent the next 4 hours curled up - chest pain abated but incredibly sick. I hate taking tablets and my experience generally seems to be less interference is best. But my reaction to the nitro does suggest that it is not angina. I could have stayed in for tests and I would really like to get to the bottom of the pain but I knew as today is Sunday nothing would happen for a day and I am seeing the specialist on Tuesday. I knew pots had stopped me walking but i did not realize how ill it would make me feel so ill. And it is so unpredictable. I run my own company and I don't know what to expect from one day to the next. I am hiding my illness from other people. i have got very clever at working out how far I can walk and maneuvering situations so that I can sit down. Most of the time I keep going despite the pain. Does anyone have similar experiences or know what causes the pain.

Thank you for response. I have been on Ivabradine but that gives me chest pain as well. I can't take a beta blocker because it takes my heart rate to under 50 I am recovering from this episode of POTS but this pain which seems like angina and stops me moving around even when my heart rate is more stable. How can you have a stress test or treadmill test when you have pots? Just the thought of bringing on this pain by exerting myself is upsetting. Does anyone else have this problem?

Hi this is my first post. I have had pots for 7 years, it has been intermittent, and was finally diagnosed 4 weeks ago. Can anyone help with my immediate problem - I suffer from terrible chest pain and it is not muscular but definitely the result of some sort of strain on my heart. I often get it when I stand for too long ( well minutes) even when my heart rate does not go too high. Sometimes it goes down my arm. As I have only just been diagnosed the doctor's initial assessment of this pain was that it was muscular but said she would do some sort of exertion test next week. This has always been my presenting symptom - chest pain-which is probably why the pots was missed for so long. Until it made me collapse repeatedly I was not aware my heart was even going fast and probably prolonged episodes of this tachycardia has been a cause of the pain. I am seeing Professor Newton at Newcastle Royal Victoria Hospital. is there anyone else in this area with pots? And has anyone had severe and continuous chest pain and had an explanation. Thank you.