Hi. Haven’t been on much recently, but lots been happening. My BP has been playing up for around four to five weeks and I hadn’t been feeling quite “right”. I advised Gp who ordered a Holter Monitor and Chest x Ray because I’ve had irregular heartbeats too. Unfortunately events overtook is last Sunday and I ended up with a heart attack 
. Although no major blockage was found I had classic symptoms and severe pain, and was treated for heart attack. I tried to discuss with a doctor and a Cardiac Nurse Specialist about the possible implications of GCA and the heart attack the following day. The doctor didn’t really know anything about it and the Nurse Spec said not his area of expertise and left the room! He said an angiogram I had in 2012 was OK and he can’t see any reason why things should have changed since then!!’ Six years!! I tried explaining about the GCA and diabetes symptoms etc that I currently have and wondered if they would have an impact but discussion was then closed! I was shocked to see how “uninterested” they were in finding a reason for the heart attack and possibility of a link to the GCA etc. I am aware there are numerous other things that can cause these symptoms aside from a blockage arterially, like micro vascular angina and micro vascular coronary disease etc, but they had no interest in even looking any further. I was discharged without a letter, my gp hasn’t received one either and is furious we have been left like this. Sent home after being told I’ve had a heart attack but no reason given and no follow up advised or any kind of forward plan. I am left feeling pretty vulnerable and am in exactly the same situation I was in before I went into hospital - with discomfort (mild) in my chest and erratic BP. I feel I am just waiting for it to happen again :/ I know sometimes reasons cannot be found but on this occasion nobody has even looked, or suggested looking for a reason - surely it is natural to want a reason ? Am I over reacting or does anyone else think this treatment is awful? Has anyone else had heart problems linked to GCA? Any advice welcome, thanks xx
Heart Attack!: Hi. Haven’t been on much recently... - PMRGCAuk
Heart Attack!
I am so very very sorry this is happening to you. It is disgraceful and inexcusable. EVERY avenue should be exhausted to find the cause, especially as you have information that might be important to them. As this is an inflammation of the blood vessels (I think) one would think it might be related or at least an influence on your heart. May I ask are you in the US or in the UK? Also It isn't much, but the STRESS of it all must be frightening. Perhaps a little relaxation might help! Here is a link to my yoga exercises and relaxations. sites.google.com/a/apps.hop...
Thank you yogabonnie. I am generally a laid back person and take things in my stride but definitely feeling a bit stressed by it all this week. Just sat wondering and waiting and don’t enjoy feeling this vulnerable. I am in Scotland - both my GP and Rheumatologist have been excellent so far, but I was totally shocked at the attitude last week As you say if someone has an illness that could relate to a heart attack You would think they would be interested to see if there was a link! Maybe they felt incompetent If they didn’t know enough about GCA to advise. Hopefully will know more this coming week! Thank you for the link. Will definitely have a look could do with some relaxation for sure xx
I'm lost for words. I think your comment about them feeling incompetent is probably correct. Sadly when doctors are trained there is an ethos of "be confident, don't let patients know if you don't know". Consultants are "God". What I can't understand is why no one was interested in you. I would have thought the cardiology team would have been all over you. We're you in a teaching hospital or a local one?
If your gp is supportive he/she should be able to do something. After all the Hippocratic Oath says do no harm, not don't do anything!
Do you have Patient Liaison in Scotland? Perhaps you could contact them expressing your concerns (rather than criticisms) . I'm trying to be diplomatic here.
I presume you have the name of the consultant who examined you, and you did see a consultant and not just a senior registrar? I would definitely be writing to someone but I'm not sure just yet of the best approach.
This is a bit radical, but I know of someone who did this..... You could write to the cardiologist stating you are not satisfied with your treatment. If I understand it correctly, you continue to have chest pain, irregular heart beat and fluctuating blood pressure and no treatment plan. You and your family will hold them responsible if you die as a result of their lack of investigation into your disease. You want a letter from them explaining why they do not consider investigating you further.
Do keep in touch.
Yes, definitely put the wind up them with a letter, put in references cited here about cardiovascular damage with GCA. A talk posted by mamici stated incidence of cardio problems in people in remission from GCA.
Hi there. Yes. Still experiencing exactly the same things as I was prior to the “heart attack”. Am not sure about the Liaison thing but it may be worth looking into. The consultant saw me mid day and was very good. Wanted the monitor left on. Told me he would not be discharging me that day anyway and would I like him to get the cardiologist to come and visit me to discuss everything. after I told him about the GCA/PMR. Said he wanted the Holter Monitor left on for another 24 hours and would review the next day - asked me to try and walk about the ward a bit with it so they could get proper readings from it. Then the cardio nurse visited with his nonsense and said he was going to speak to consultant who wanted to keep me in to “see where he is coming from”! Basically it appears on the say so of the the Cardio Nurse Specialist, the ward Consultant did a complete U-turn and let me go home - though I’m beginning to wonder if his junior doctor made the decision and not him! :/ At half three I then was visited by the consultants junior doctor who came to talk me into going home! We spoke at length and he didn’t know much about GCa, perhaps read a paragraph or two before he saw me as he said some odd things (got them wrong), and said sometimes they just can’t get a diagnosis! Totally appreciate that on occasion happens. However none of them had even LOOKED for a reason for the heart attack - no ultrasound, no cardiologist, no follow up, no angiogram scheduled, scans. Nothing! Not even a discharge letter to my GP, and still no letter to me! I know if I was the doctor I would be interested in learning about a potential link but they clearly were not! Oh and when I was discharged I was still bright red, sweating profusely (worse than Pred sweats) and BP:pulse was still high and temperature raised, but they were happy to let me go like that! The whole thing is a comedy of errors. I will wait and see how my GP gets on - hoping to hear today, and then I definitely will make some kind of complaint hopefully with my GPS backing! Xx
Dear Hev1964, I am so very sorry to hear this... I am in shock at the treatment/care you received. I get that further tests and investigations might have to be done to find the actual cause but, no follow-up, no letter, no explanation or interest in the GCA? Wow! I do not think you are overreacting at al! I hope you pursue and get some satisfaction. I'd want some answers.
Hi thanks mamici1!
Am so glad you agree. My GP spoke to the ward twice last week and was told the discharge letter would be with him imminently! He sat waiting for it for an hour and. Half and it never arrived (electronically). He phoned me and I confirmed I still hadn't received my copy in the post and he is really furious about the whole thing. He was concerned if I had to return to a and e they wouldn’t know how to treat me as there was no info available about my discharge/diagnosis - though a heart attack was detailed by a and e staff on admission. Unfortunately, whatever else he has done since still hasn’t produced the goods! He said he would contact me Again today but can’t see him getting very far with it being a public holiday. I think I was let go without the letter because they needed the bed to be honest and weren’t giving me any new treatment, (in fact they missed my night time meds our altogether on Sunday!). I was on a monitor but because the cardio nurse decided it “wasnt cardiac” with no evidence of that, he took it off me there and then. I don’t think he likes me asking questions or making suggestions about the gCA-PMR - just insisted the 6 year ago angiogram was sufficient insisting little would have changed since then! :/. I was totally shocked by this as he has no notes about me in front of him and never took any of my medical conditions into account, nor how I presented or was diagnosed the previous afternoon with a heart attack. It was just all very bizarre to be honest! I still feel very wary with every little movement/niggle, so hopefully I will get some kind of reassurance this week to make me feel better! Xxx
OH MY GOODNESS... the story gets even worse! Don't let this go... but definitely don't get stressed about it! Try to get to the bottom of it, or solicit your GPs help in getting to the bottom of it or PALs even.
It truly frightens me the treatment some people are getting...
My thoughts and prayers are with you and we will hope this was a "glitch in the matrix," and one that will NOT be experienced again!
Do take care of you and BREATH.
Thank you :). I think I’m letting it all out here! My son came home from Edinburgh because he was worried and I have my 19 year old daughter at home. I think we tend to try and stay in control when they are around, don’t want to panic them! Now I’ve started telling the story I can’t stop 
. I am usually pretty laid back and will try really hard to keep the stress levels down - thank you for your kind words xx
The mind boggles. No possible change in 6 years??
I would hope that one of the outraged docs would be your advocate and press the cardiology team for more investigation and rationale for their course of inaction. How do they know it wasn’t a severe angina attack? Did they do a troponin blood test? Perhaps your doc could request agiongraphy and an CT/ultrasound to check for aneurysms or blockages on the grounds that GCA can do damage. Perhaps your Rheumatologist could get their head together with the GP. Sounds like it is the usual arrogance when it comes to gaps in their knowledge, “if I don’t know it, it doesn’t exist”. I’ve seen this many times over the years.
Yes I thought that too about the six year thing!! They didn’t even try and contact my Rheumatologist to discuss. I will suggest to GP he perhaps speak to rheumy - both of whom have been great up until now - and perhaps they can present a united front. My GP has already put in a request for a home Holter monitor and now I’m concerned if I go for it I will have to deal with that darn awful cardio nurse specialist - and think he may try and stop me getting that too! Yes thee troponin levels were 9 within first half hour and they repeated it 3 and a half hours later (under the recommended time) and it was the same. I know it wasn’t high enough to send me to CCU apparently as that was when they decided to keep me on the ward when they got the result of that. I do know that not all cardiac things raise then Troponin but they choose to go with it, despite presentation/medical history etc. My first ECG showed something and I was tremoring and sweating profusely with severe chest pain and left arm and back pain but one done about 12 hours later was ok. Sorry for ranting on so much xx. (On top of the increased aneurysm risk from GCA my father has had an aortic aneurysm for eleven years - which increases my risk even further, he’s now 84).
Not sure if it is PALS in Scotland - but I would be submitting a complaint asap. Particularly naming the nurse specialist.
There was someone on the forum who was told by a top GCA expert she didn't have GCA as the TAB was negative - she persisted and a PET scan showed larve vessel vasculitis all over the place. The consultant did not have the manners to admit to her face he had not been right - sent a junior doctor with high dose pred and "see you in 6 months". She felt the same as you and requested cardiac monitoring which was denied as unnecessary - and a short time later she had a heart attack. Subsequently she managed to get a referral to Prof Mason at the Hammersmith (I think) who was horrified at the non-management she had had. He is a vasculitis specialist. I'm not sure of her history since though.
I know you have a totally different system so can't say who you would like to be referred to in Scotland. You are in Inverness aren't you? Not sure I'd be at all happy about Raigmore's attitude (I assume?). I think you have to get the GP riled up and contacting the consultant you saw first.
Above all - you are reporting evidence of an arrythmia (which could have been the cause of the symptoms if you had had a bad episode) but have been sent home without medication for that - you need at least an anticoagulant. In the meantime the best you can do is call 999 if you have any signs of your arrythmia or pain - if it is paroxysmal like mine it may have resolved by the time you get to hospital and they don't see anything. A paramedic has a far better chance of seeing it and that is what I was told to do. That happened to me recently, I really felt unwell during an epidose of atrial fibrillation and we called an ambulance. The trace done by the paramedic was definitely not right so I was taken into the local hospital, 5 mins drive away. By the time I got to triage it was gone, no sign! It didn't matter - I'm already on medication, just this one had been upsettingly long and unpleasant and what a waste of time and effort! The arrythmia specialist cardiologist I saw was confident that the a/f is due to the autoimmune part of the PMR having damaged the electrical cells in the heart that govern heart rate.
Yes it Raigmore hospital I was in , and despite A and E being fantastic once I got put on the ward it went from bad to worse! As soon as I arrived at A and E I was whisked straight through to a cubicle, jumping the queue, and set up for ECG as it was so obvious something was happening. They explained everything, were caring and kind. I didn’t even get a water jug up on the ward!! My mum has the atrial fibrillation like you, and she too was told to call an ambulance , though she feels a bit silly doing that because it stops. I keep nagging her - they took her to hospital one time and then it stopped as she got out of the ambulance - she still not being treated as no “evidence” :/ so just endures it for now. Interesting to hear about the PMR affecting the electrical cells that govern the heart rate. My pulse has been regularly (daily) over 100 for months now and way higher some days, like 130-140s, but I put that down to Pred, though sometimes I can feel it thumping away. They gave me the anticoagulant and everything else needed for heart attack treatment on the day but have come away with no medication or even advice at all. Thank you for replying xx
Really think you need to discuss it with your GP. And complain about the ward.
I do despair at the way a/f is "managed" in the UK. There are efforts to get it treated seriously as it is a major risk factor for heart attack or stroke if the tiny clots generally present in the heart are disturbed and let out into the circulation - the anticoagulant is to reduce that risk. The hospital here was about to discharge me when the report on a/f came up to the word and they literally kept me in prison!
Pred may cause a raised heart rate - but it should be managed with medication if it is that high.
Raigmore saved my daughter's life a couple of years ago - she went skiing at Aviemore but felt unwell and went to the medical centre where a very clued-up nurse recognised the possibility of sepsis. She was blue-lighted to Raigmore - she was rather ropey for a few days but is OK now.
Yes the more I hear and read the more shocked I am at how some people get treated. Your daughter was very lucky to come across a clued up nurse especially with sepsis - so glad she didn’t suffer any longer term side effects poor soul - what a shock that would hve been for everyone though! Sepsis can take hold so quickly! I will speak with my gP and see how he feels about I all before I put pen to paper. Thank you . Xx
x
OMG what an appalling mess! Such an awful way you were treated, definitely needs an explanation from those treating you. Not good. PMRpro’s advice to call an ambulance if you have further problems is excellent, a six year old ECG is REALLY NOT relevant today. A work colleague went to A&E with some chest pain ECG was normal went home but three HOURS later was on his way back by ambulance with lights and music ECG definitely not normal this time. All good wishes and take plenty of rest. 💐
Many thanks. I’ve heard/read that scenario so many times it’s very worrying - I believe they tend to send women home more than men too - with diagnosis like acid reflux, or if they fit the demographic, causes by menopause! Very worrying! Fortuntely we live about three minutes by car from the local hospital and on Sunday I jumped into the car with husband driving and went straight to A and E in agony. Probably quicker than the ambulance - but that would probably depend on what time/day it was regards traffic! To be honest I never even considered staying at home it wA that painful and scary, and different from the niggles/discomfort in the month leading up to it, completely another level of pain! I just knew I had to get help. Nornally I do anything to avoid hospitals Treating people the way they did could put some people of and prevent them going back a second time with devastating results, but I WILL go if it happens again or get the ambulance. Thank you for your kind reply xxx
Good to know you will go back in spite of the way you were treated. Sometimes you have to be very persistent. Hope your GP and/or rheumy can help you get this sorted very quickly.
Thank you everyone for your support and encouragement and listening to me and any and get it off my chest I absolutely needed to so that, i had built it up all week. I will go and take a day or two and speak to my go and write to the consultant who saw me in the Monday and ask for some answers and explain how I was made to feel. Thank you everyone again 💕 x
My mother had similar experience eight years ago. Emergency admittance, sent home in same condition five days later without meds or monitoring programme. I rang hospital furious!!! They said she had appointment in three months with specialist. So, I asked, who do I sue if she dies between now and then. I then stated I suggest you get an appointment for later today or tomorrow unless you want to be reading about this hospitals treatment of elderly patients in the press. Woe and behold an appointment cancellation came through for the following day. Consultant agreed to plug Mum into a 24 hour monitoring device the following week. Again I asked him who would I sue, him personally, if my mother died during the interim? I then suggested he found a monitor there and then. He did! 24 hours later Mum was readmitted. A long story on poor treatment and indecision followed however after much ado Mum had a pacemaker fitted and also a trial fibrillation meds. Kick up a stink Hev! They have been neglectful sending you home with nothing. I don't normally 'do' threats but possibility of life and death scenario justified it. I am in UK. Two months after this hospital in national news due to failing inspection - guess what the top key issue was....... Care of the elderly!
Hound the hospital or get someone to do it on your behalf.
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