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Yes, I would love to meet up. Its much quicker talking than posting and i have longed to talk with someone else with pots. I live in Newcastle but happy to travel anywhere by train. Any suggestions?

Hi Gemma, I have just responded to your email. Just thought i would post as well for anyone else. Chest pain was my biggest problem and like you Gemma i had lots of different types of pain and no one seemed to take it seriously but it was debilitating. I have now been diagnosed with microvascular angina by two cardios. This diagnosis has helped me deal with the pain and also has meant that i have found medication to help. It has been likened to spasm in the micro vascular vessels. I tried bisphoromal (sp?) but it just gave me a terrible headache. I now take a small dose -20mg - 2 or 3 times a day and this along with restarting HRT has brought my symptoms under control. Gemma - i also ended up in A&E regularly and nobody believed it was anything other than anxiety. But when your heart beats in strange ways it makes you feel fundamentally not very well and out of sorts. I felt very unsafe and scared because i knew something was wrong. However i now feel confident that someone knows what is wrong and that my heart is working ok. I eat very healthily and try and exercise as much as i can to keep my heart strong. Is there any cardio that might discuss the possibility of micro vascular angina. I do remember raising it in A&E but the doctors there are not specialists. I am really interested to see if anyone else has any further info on this as i am still not sure how MVA and POTS fit together. I have not found a doctor who know much about both of these. Good luck.

Hi, I share your symptoms but not from sex. the chest tightness that lasts for days then burning. I have never seen anyone else describe such similar experience as i have just through normal living. I think it is due to spasm in the micro vessels around the heart - for me. And it takes some time for it to pass - tho is the bit i find hard to understand and to tolerate. Sometimes i take bb's and sometimes valium - both can help when it's acute. Bad luck about the sex bit - sure someone else will throw more light on it. But things change with pots all the time so i hope you are lucky and it passes.

Bumping this up to see if anything new has come up regarding surges. seemed to be free of them for a while and they have started again and are seriously interfering with the quality of my improving pots life. Mostly they are triggered after having hr jumps that are followed by surges and an experience of too much adrenaline. It writes off my day. I feel ill, spaced out, chest pain, shakey, cold, breathless. Thought i had found a new doctor who might help but then he suggested it was it was anxiety and it just puts me into defensive mode and i know i need to find yet another doctor. Any clarity from anyone. Thanks

Hi, yes i get a burning sensation but i identify it more with my chest area and probably my heart. But it does feel like burning and hot and uncomfortable. I am still at the point of trying to get it sorted out as it often co-incides with other chest pain and arrhythmias. My doctor just said anxiety -so i feel the same - very irritated and still no understanding.

Thanks Sarah, they are very kind words. I am probably coming to terms with this additional diagnosis but it has really upset me. It is reassuring to hear about your partner - i am really pleased for him that it is under control. I am feeling a bit better now and have booked to see my cardi privately as soon as i get back to the uk. It is shocking that i feel i have been forced into a position to pay for care but otherwise nothing seems to happen. I think from your posts you are quite new here and i hope you find some help with your symptoms and reassurance here too. Cheers.

Thanks for responses and comments. As i have now been diagnosed with atrial fibrillation i will ask for a second opinion and the test to be done again. Apparently 50% people with afib also have sleep apnea and may infact be caused by it. So it seems fairly important!

Thanks for all your comments and support. I am feeling a bit better today but still have chest pain and am taking it very easy but have started on a small dose of propranolol In the night my hr dropped to 42 - but only briefly a couple of times. I have rang my GP in England and am waiting for his advise. We now have the number to phone for the water ambulance if things get bad again. Like a lot of things with pots - i will just have to stay calm and know that this will pass. Maybe now i will get to the bottom of this - i have spent a long time trying to get someone to listen -like a lot of people and even now i am not sure whether afib completely covers quite what happens? I am now really frightened about my flight home in 18 days - i cannot bring myself to look up contra indications to flying - i have had so many bad episodes in the past. Just really grateful this site exists. Thanks.

I had a bad episode with prolonged tachy and chest pain, was taken into hospital A&E, they could find nothing and to go home. I refused and said the system was failing me and i wanted some answers. After a lot of fuss they kept me in - found an a fib during the night, put me on a monitor for 10 day which i handed in then came away on holiday to an island in Europe. Lucky me - but it was a long planned and well earned break after setting up a company during the course of discovering and coping with pots three years ago. I phoned for results two days ago and was told i had atrial fib as well as the pots. I have known for a long time there was something other than or being caused by pots that interfered with my heart rhythm and caused unrelenting chest pain. I was told to see my cardi as soon as i get back for medication - Bisopromol and Flecanide. My HR is often down in the low 50's so know this may not be straight forward. Last night i had a heart jump - which i assume is a fib and my legs went wobbly, then i started to feel very ill, light headed, BP 100/150 then hr surged to 131 with awful chest pressure, my legs and hands went numb and tingly and looked white, i felt unable to communicate. I took some aspirin then 5mg propranolol, (which i have for emergencies). The episode went on for 2 hours with my hr surging and legs and arms tingling - i was very frightened and didn't believe it would pass. In England i would have gone to A&E but i am on an island and i don't speak too much of the language. I woud really appreciate any advise from anyone who has a fib. A week ago i was swimming front crawl in the sea. I am still very shaky and weak today and not sure what is normal - and of course it is sunday so i can't ring any of my docs in England. Thanks

Thank - that is all reassuring. I have been absolutely taken aback by the full force of my symptoms after such a good period. E Soskis - this is what i have - symptoms all over the place, high and low. But i think my adrenaline has kicked off again. The chest pain and pressure / burning / tension are awful. When i fly i take BB and small does of valium. dpeepps - sorry you get this too - it is my worse symptom -can you expand you expand on your experiences- everyone looks so blank at me when i try and explain. Lemons - yes i think the warmer weather has dilated my blood vessels in my legs - i have pains in the back of them and maybe this is the problem. Otherwise it is poor endothelial function in my chest. Bren -i think it is also pressure changes. I shall look up wher to get magnesuim from. Cant take more than 5mg BB as it drops HR into 40's. At the moment i am alternating between this and small doses of valium. I have not been able to go to work or do anything. Thanks everyone

Hi, Wonder if anyone can help to settle my mind. I seem to be getting lots of flutters that are giving me really bad chest pain. I have had extensive tests and there is nothing structurally wrong. In the past these jumps would be really high -say 160 bpm and happen when moving too fast but now they are 10 beat jumps and when i am sitting. -Doesn't sound like much but they have completely debilitated me and made me really feel ill, tired, tachy, potsy and really bad chest pain and they keep happening a few times a day. I am just recovering from one and another happen. It used to be one big one a week. Luckily i have a tape on so have caught a few. I had an atrial tachicardia caught overnight on a monitor in hospital and Dr said it might mean nothing - hope so! I think neither th Drs or myself know whether it is a cardo problem causing the pots to kick of or solely a pots problem. I was about to post about how I was getting better and then had a massive step backwards. I have a flight on saturday so feeling very nervous. Just looking for understanding before getting on the plane - does anyone else get this.

I use a polar FT2 - i have tried other but always come back to this. I wear it everyday and the battery only lasts for 6months. I dont change the battery as i use it to swim and that can break the seal. Alkso dont forget to use a lubricant with it - like KY. I used to get alot of false readings until i did this.

Hi, Chest pain is my biggest problem. I think i have a number of different irregularities with my HR. Recntly i eas diagnosed with syndrome X or micro vascular angina as an explanation for the constant chest pain. I also get sudden jumps that set off the the chest pain and the pots. I have yet another monitor on try to catch what thses jumps are. The thing for me is i might be really well then get a HR jump and it makes me really ill for hours - days. Not sure if they cause or are part of pots. Dont know if this helps but I am also really interested in this topic.

I was referred as a second opinion to Prof M on the NHS. I has autonomic tests then an appointment with him within 3 months. Then they wanted me as an in patient and that appointment took another 16 months. Not sure how much i got out of it - pots is a mystery - nothing works for everyone and personally i still haven't found anything that has "cured" me. But then my symptoms keep changing and when i feel ill i always want to wait until i am more stable before taking meds but when i am stable i am an optimist and really believe i am getting better. At least you get fully tested and they picked up with me that it might be EDS and so am waiting for a referral for a test for that. My doctor in Newcastle did not seem too happy about the second opinion and has now discharged me. I would keep going with it and at least you are doing something that might come round sooner than you think. Good luck

I have similar experiences in the uk. I get passed around between falls and cardio - the bottom line is there are no definite answers and the medical profession dont deal with that weel. There is an array of medication that may or may not help and you need to work your way through that and see if any of it helps. Good luck.

I may also try this combo so am interested in your experience. I also have the hr jumps - these then cause the pots symptoms and give me hours of chest pains. I have managed to control them as i have got better to about 1 a week. You are the first person i have noticed gets these as well. Mine are just sinus node tachys. Sometimes the beta blockers cause these initially when they enter my system half and hour after taking them. But i have found the beta blockers stabilises them. I take them as and when needed.

I get strange red streaks on the inside area of my knee and mostly only on one side. It runs for about 8inches. I was aware of this even before I knew i had pots. It is in lines and I noticed it first on holiday in Portugal where it is hotter than home. I think i only get it when i am hot and in the shower.

Just thought i would add - I get the internal vibration too. It's not my heart rate and I don't feel ill with it and it only happens in bed. Its got better recently but when i first had full on pots it was lots of nights.

Hi Bebe, trying to sort out the MCAD issues too - thanks for the post. Can anyone tell me should the tryptase test be done when you are symptomatic? I had a test but felt fine at the time. I frequently react after food, in cars, etc but cannot find a common denominator. Can mast cell be like this?

Just bumping up as it has cropped up in another post. Still interested in anyone elses take on Microvascular Angina.

Hi Pumpkin, I suppose that it is if anything feels different you should always get it checked. Thats what my GP say and i think i am resigned to getting checked even though i have been to A&E a dozen times. Yes we have the symptoms of a heart attack but all our vitals and tests show nothing - it feels unbelievable it can be nothing. Joann - i feel i have crashed Pumpkins post - sorry - but did a pos about this a couple of weeks ago - i will bump it up. In the meantime - i am waiting to see a specialist next week and the suggestion from the cardio was antideppresants to calm the nervous system and stop the BP spikes. But he want me to delay commencing treatment until i have seen the pots specialist. However he was the best cardio i have seen - and i feel at last someone even believed me about how bad the chest pain was. Just look up microvascular angina - it is all there for me. Hope this helps anyone with chest pain - i have not seen much about this on Dinet and it might help other.

Westernmass, What herbs did you find help. Thanks

Hi Pumpkin, Really hope this is post surgery and you feel better soon. This is also my biggest problem - and feel some relief that a new cardio has offered an explanation which is in a recent post -Chest pain microvascular Angina.... I have now received the summary letter which I am so happy will be on my records as like a few of you I am fed up of my records being full of "unexplained chest pain" sometimes with unwanted implication. This is an abridged exert of what he said - "In my opinion POTS is part of a spectrum of overlapping diseases that affect the nervous system......The chest pain could be due to hypoperfusion of the micro-circulatation due to tachycardia or may overlap with microvascular angina commonly called syndrome X.....this syndrome exists in patients who have normal epicardial coronary arteries.....cardiac syndrome X has been treated in the past with Imipramine.....SSNR...SNRI ...and would be worth considering. He also discussed micro infarctions which are caused in the small vessels by lack of blood flow and can cause pain. For me this is a breakthrough and i want to share it with everyone who has POTS and has ever suffered from chest pain. What I am understanding now is that there is sometimes an increase in blood pressure and it feels like a spasm and that also seems to increase the pain. So like you said Joyagh - a vascoconstriction. He has suggested that in London i am tested properly for this - I presume this is the test when they speed up your heart and MRI the blood flow. I still wonder though if my body is not in a pots "spasm" then maybe it will not show anything unusual. Seattle - From what I understand about Syndrome X/Microvascular angina, it continues after you have sat and laid down because it has already starved the heart of oxygen or the spasm continues because it is caused by POTS even after the event. This is how it differs from normal angina. But I get both as well - sometimes it goes when i drink or recline but often i am left with chest pain for hours.

Yes this started with the Pots. Both ears - cant be bothered to check it out as it seems the least of my worries but mu pots specialist regarded it as a part of pots. Seem to have some hearing loss too - slightly more worrying.

So sorry. My daughter has just had a series of miscarriages and because they were early nobody thought that it mattered too much. But it does. Treat yourself kindly and i hope you feel better soon. Its a big upheaval in your body. Hugs