I have been suffering with 'cardiac syndrome x' for the ...

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I have been suffering with 'cardiac syndrome x' for the las 7 years.

I was initially told there was nothing wrong with me at my local hospital, when i went there with chest pains and pains in my left arm. I innitially thought i was having a Heart Attack, with the severeness of pain i felt, but was told i could return home and run a marathon', thank god i didnt .

I knew there was somthing 'not right' within my body, so i sought private medical attention, which led to my first Angiogram...this showed, 'normal' corinary arteries. ..i was sent home, and told not to worry, but was not told exactly what was wrong with me..so..consequently continued to worry that i was having a heart ttack every time i had symptems..which were often.

I then asked my gp to refere me to a better hospital, as i refused to spend more on private medical care...which he did. i had yet another angiogram done, which again showed no blockages in the larger arteries..this time, the consultant said it 'could be' due to the smaller arteries being narrowed..but it was not caertain. i was advised by her to look up 'Angina ..without coronary artery blockage' on the 'internet' and told to get on with my life.

which i did..for a while, then things were not improving and i was on drugs for angina and collesterol. so my gp reffered me to yet another hospital..which was a specialist heart hospital..a long way from where i lived, but i didnt care. After seeing a consultant, (who, may i add was less 'pompas' as others i had seen) he sent me for lots of tests which i was not offered at other hospitals, and on getting the reports, and seeing my destress which my condition was causing me..he asked if i would allow him to do yet another Angiogram procedure , so he could define for himself exactly what was going on. At first, i was very apprehensive about having another Angio...as i had a bleed with the one previouse,,and the first one , i had a doctor, who couldnt get into my artery properly, which led to my having groin/leg pain for 6months after.

The consoltent aggreed he would do the angio himself, and have me stay overnight, as the journey home was so far, and i was concerned for another bleed.

I had this done. and he confirmed my main arteries were ok..and said not to let anyone else do another angio on me. he also confirmed it was indeed my smaller arteries at fault, and gave me another drug to go along with what i was already taking.

I cant say i feel any better, i dont, somtimes the pains are excrusiating, now with added back/stomache pains also. but this hospital has for the last two and a half years since the procedure, kept an eye on me every 6 months, instesd of just sending me home to go it alone, without support.

I am now looking for some kind of support group in or around the London area, as with this condition,i find it is beneficial to have as much support and understanding as you can get..i do know this, my condition is worse when i am under any sort of stress. so i also think relaxation groups with this condition in mind would be beneficial to me and fellow sufferers..I was in my 40's when i first had the symptoms of 'syndrome x' now i am in my 50's

I am open to all sorts of help and support anyone reading this could offer, as i am sure lots more fellow sufferers and there families would be. Thank you for taking time to read this. i hope it will be benefitial to others . Take care, and god bless x

[i:945737fdb2]This message was automatically imported from the original Patient Experience[/i:945737fdb2]

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  • Posted

    Hi going through almost the same thing.Except they have put two stents in

    my heart but still get angina,but some times I have discovered its not always a proper angina attack. But strong heart burn from acid reflux.If it

    happens at rest in the evening after eating try taking Gavisgon to see if it relieves it, then if it helps see doctor and tell him so.As you might need acid reflux medicine.I am going to see stomach consultant next week.

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  • Posted

    I know this is a old thread but i too am going through this nightmare and i need to speak to others.
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  • Posted

    What is it that worries / ails you sandy40 ??? smile
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  • Posted

    I would like to know how the illness affects others/how bad the pain gets/how long for and do thet get good days without pain?
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  • Posted

    Do you believe you are suffering quite badly from almost constant Angina to various degrees ??? Have you had your Heart investigated, what did they say ??? They gave you medicines and they're rubbish / make you feel terrible ??? You haven't got Glyceryl Trinitrate ??? neutral
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  • Posted

    yeah,ive had a angiogram,3 echos,2 treadmill tests,nuclear thalium scan and countless ecgs,all normal,well ecgs show non-specific changes but no-one seems fussy on them...i have chest pain almost constant at various degrees,im on meds which include GTN spray and GTN patches..
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  • Posted

    I'm lucky I was sorted out within months, it must be very frustrating for you, the not knowing / not being sure can make you doubt your own sanity sometimes, when are you going back to see them again ??? You must keep banging on at them to get to the bottom of how you're feeling and to provide you with adequate medications that provide you with at least a few moments a day when you can almost forget that you have something sneaky going on neutral
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  • Posted

    Hi Sandy40, can I join the club? Nice to find an active thread. Dr at Newcross A&E last night even suggested regular muscle pulls or regular inflammation of cartilage and that I should push my GP to investigate other possibilities.

    I’m on Lansoprazole, Amlodopine, Atanolol, Asprin, Simvestatin and GTN spay. Angiogram = normal, Stress test = 88% completed-normal, ECG’s = all normal.

    Pre 3 months ago everything fairly stable but GP didn’t like me using GTN at least once per week because it is for emergency only. He increased Amlodopine from 5 to 10mg. This stopped the need for GTN but I started swelling in all different places, I’ll stand most things but puffy feet and ankles are a no, no. After 1 month he dropped me back down to 5mg. After two weeks everything started to go silly – pains now spreading out from centre to both armpits and seems like you to be almost constant although it like you fluctuates. GTN works within 4 min and lasts for about 1 hour. It is slowly getting worse, last night I had to take a second 15 min after the first and it started coming back after about 30 min, hence A&E.

    I have an appointment on the 25th with the cardiac consultant because my GP wants to know why my toe nails keep going grey/blue but I am unsure what to do because I feel I need attention now. A&E Dr definitely said ‘I have read your notes and it is definitely not related to your heart’. The reason I am on this medication is that after having a BP of 170/110 with a pulse of 102 (ave 142/96 – 98 daily) and being given a 34% chance of heat attack within the next 10 years they attacked the risks.

    I don’t know about you but I could sleep for team GB and I am realy fatigued and lethargic.

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  • Posted

    Once a week GTN 8) and I wondered why my GP looked mortified when I said 3 or 4 times a day :D Well if it's any consolation I'm convinced you have Heart problems, you are obviously describing Angina smile
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  • Posted

    Things have moved on following my appointment; They have 99% confirmed Syndrome x with Reynard’s or it could be the other way round.

    I have stopped taking Atenolol because this could have a detrimental effect on both and they have replaced it with Imdur starting me off on 30mg. So far the effect on my heart and swelling(s) is very good, first time I have seen my ankles in a while and for about 10 to 12 hours I do not feel any chest pain or discomfort (I didn’t realise how much I was having) BUT! the headaches are super bad, a couple of over the counter Asprin last for about an hour. The paperwork and reports on the internet say that these headaches are temporary and are a sign that the drug is working.

    I asked about coming off amlodapine but the reply was no! because you will probably have a heart attack.

    Happy days.

    How goes it with you 2

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  • Posted

    Glad to hear that you are now on the mend. (Reading up on it) this Imdur stuff sounds good cheesygrin GTN sprays effects are frankly quite pathetic rolleyes There's no way 180 sprays are going to last me a month :[ I'm personally still having some feelings that are rather disconcerting, especially at rest / in the evening / bedtime,, but I'm a lot better than I was smile
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  • Posted

    How is your willingness to do things because mine is very low and I am getting very tired and grumpy.
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  • Posted

    I feel quite demotivated, I used to go for a walk every day now I can't be bothered, I have difficulty getting to sleep but once I do I'm out for 10 - 12 hours, ruins my day, I can't plan for anything :[
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  • Posted

    Don’t know if this helps House. The first GTN spray I had was in a metal container and seemed more effective than this second lot which is in a pink plastic coated bottle. And yes I can agree with your last post, from what I have read it is par for the course.
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  • Posted

    Hey that's interesting, I noticed that about the sprays as well, the Nitromin stuff works far better than the Nitroligual stuff smile
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