Hello all, I have a question. My daughter who is 22 has connective tissue disease. I am a lupus sufferer. So it is in the family. The question is related to my daughter. She has the scariest moments time to time where her heart races to 200 beat per minute. It can last about 5 mins to an hour over few days. We manage it with her lying down and not moving as the slightest activity increases the heart rate than she feels ok. She also has shortness of breath and gets tired very easily then she recovers fine after few days or a week. We have a great consultant and he can not find any cause. All test show the heart is fine. Anyone out there who has similar symptoms? It is very scary for her and seeing her like that breaks my heart. There is no trigger unless she over tires herself which she now has compete rest. Any advise? Anyone out there who has the same condition and symptoms? Many thanks, L
Heart rate 200 : Hello all, I have a question. My... - LUPUS UK
Heart rate 200
Try to get an ECG done during an episode.
Thank you for your reply "Baba". We will try. Unfortunately, by the time we see a doctor the rate is a settled (it takes at least 3 hours if we are lucky to be seen in A&E) and once (in A&E) they said it must be due to being nervous. How sad is that that we got there as a result of the heart rate being high and they think it is normal as she must be over excited to be in A&E. NHS is great but not conditions like Lupus which changes quickly is not easy to solve if you have to wait unless its life and death and sadly because we can not address matters on time, it becomes life and death situation. Many thanks again for your kind reply and we will try. With best, L
No - never wait to get to A&E. Dial 999 and tell them tachycardia, difficulty breathing etc etc - a paramedic should be dispatched immediately (always supposing one is available) and they carry an ECG machine. They should be there in minutes and stand a good chance of getting a trace - and no "nervous" will develop a tachy of 200. You should have been told this and not dismissed. PALS complaint again.
Thank you PMRpro. Your information is very very helpful. I actually moved our home next to a hospital as a result Lupus. I mentioned to her just now and she reminded me that we were never referred to a cardiologist. We will visit the GP and asked to be referred to one. xxxx Your information has made a big difference. With best wishes,L
If you are in England you have the choice of where you go. Do some homework - The Brompton and Harefield, Papworth, Liverpool, Addenbrookes and there are others. If you choose just a top cardiologist and they decide it is an arrythmia then look for the top electrophysiologists though they should be able to recommend.
My a/f is thought by the local arrythmia specialist to be due to the autoimmune part of polymyalia rheumatica. There is certainly an increased rate of a/f in rheumatoid arthritis - cardiac involvement is mentioned for MCTD and definitely for SLE. In fact, this
ncbi.nlm.nih.gov/pubmed/211...
says "A complete cardiologic evaluation should include the conduction system and must be carried out in all SLE patients to identify arrhythmias, therefore preventing symptoms and also sudden cardiac death."
At the very least I would think she should be on an anticoagulant therapy - even if they can't find a way of managing the episodes. I'm no expert - but I DO know how it feels. And mine is small fry compared to hers.
PMRpro has given you great advice below, the ECG needs to be done during an episode, it will probably be normal at other times.
When you say you have a great consultant - I hope that is a cardiologist who is expert in arrythmias? If it isn't - it needs to be and a referral to an expert heart centre as well asap.
The shortness of breath is due to the high heart rate - the body isn't getting enough oxygen because the blood isn't getting around the body so the signals sent are "breathe more". But advice - no sorry, despite having an arrythmia myself. I have a vasculitis and I find that when I lower my dose of pred to 7mg the arrythmia is very frequent. At 8mg it is better and at 9mg it is gone. That suggests there is inflammation somewhere that is triggering my arrythmia. I'm told my heart is fine - but the electrical system isn't.
Dear PMRpro, this makes sense. Thank you for your reply. Yes all check up with heart is fine but there is something missing that they miss easily and seems electrical system. Our consultant is a Rhumy not a cardiologist. I am taking her overseas to see a specialist as we failed to get an answer in the UK and she is so scared during these attacks. I will discuss this with her consultants. i wish you a quick recovery. Thank you so much. x
You really need to get a cardiologist on board in the UK - she will need follow-up. There are superb cardiologists in London. And I'm not surprised she is scared - I've only had a heart rate of 230 once and I was s&*t scared despite being in hospital at the time!
Have they ever managed to get an ECG trace during an episode? And why on earth isn't she under a cardiologist? That needs a PALS complaint at the very least. I've met some arrogant rheumies but that beats all.
Hi LalSD,
I have Scleroderma and recently went for my yearly ECG, ultrasound the technician was quite worried and got another colleague to check, they then did a EKG. I was asked lots of questions and they made to phone calls as she was worried that my heart was skipping a beat (ectopics). Anyway they allowed me to go home after they checked things with the rheumatology dept. I then had my heart monitored for 24 hours, this was requested by a cardiologist, fortunately everything as ok but was told not to overdo it and to call 99 if I was dizzy, out of breath, got palpitations or was nauseous. My letter arrived with some readings, which don’t mean anything to me but looks like everything is OK. Worth following up with a cardiologist, they are well equipped to investigate these issues.
PMRpro always gives good information and others here too.
Atrial flutter. Happen to me when I was 16. Need a cardiologist that have had treat pediatrics since is most common with kids and they did an ablation on me. It controlled 75% and once or twice a year I get flareups of my heart going crazy I call it. They had use beta blockers to make the heart go slower which in turns lower your blood pressure and made you dizzy. Cafeine intake will make your heart goes fast when you are having the episodes but I just drink less. Even after 24 years cardiologist do not find nothing wrong with my heart because atrial flutter does not show unless you are having the heart rate fast in the moment.
Hope it helps
There is a fantastic cardiologist in London for these type of problems. He also has an interest in connective tissue diseases. My son saw his him. His name is Dr Nicholas Gall. He is at King's College Hospital.
Once you see him you can be provided with equipment and Heart rate monitors which your daughter can wear for one week. You might catch an episode that way or during the outpatients tests when your daughter's heart rate will monitored whilst putting the body under strain eg stationary cycling.
As well as arrhythmia he specialises in Pots which often goes hand in hand with connective tissue problems such as Ehlers Danlos and hypermobility.
Hope this helps and best wishes
Hello Pussbella, Thank you very much for your kind suggestions. I will try to see if we can get an appointment with Dr. Nicholas Gall. My daughter is a patient at Royal Free and is under great care but not enough for us. Her Dr. is such a detailed and exceptional profesor in CTD. Although we had the heart monitoring machine for a week or over night or 48 hours in the last year, none of the readings were in a timely manner. By the time we get the machine, the heart is ok. Because we don't know when heart will play up, and by the time we have an appointment, which takes at least a week, my daughter is well enough and heart is stable with minor issues. We bought a watch which measures the rate and we keep records on our end for next appointment. Unfortunately, CTD (Connective Tissue Disease) is very unpredictable and confusing for us and for our consultants. No day is the same as the other or no month is the same. We will call 999 if it happens again, and I will take her to Turkey where I have access to private medical and also started the process of referral to a cardiologist in London, preferably Dr. Nicholas Gall. Many many thanks for your reply and suggestion, most valuable. With best, L
Hello, have you looked up PoTs? Very common in CTD patients and especially young females. I had similar problems and we couldn’t get to the bottom of it as every time I got to the hospital or drs they’d measure my heart rate and do an ECG lying down when it all quite quickly reduces.
It’s not any damage to the heart, it’s part of the nervous system so your body reacts badly to standing up. Mine got to the point where I was losing consciousness on standing so they admitted me (I’m Royal Free too) had loads of tests and the only one that really showed much was the heart rate response to standing. Boots have blood pressure kits that also measure heart rate so it might be worth getting one. If the difference in heart rate between lying and standing goes up 30-40 depending on her age then that’s a classification for PoTs.
It’s a horrible feeling and it makes me really fatigued. There are some medications and techniques to manage it but the best thing is lying down! Obviously that’s not great for having an active life. Mine comes and goes with my other lupus systems and like your daughters definitely gets worse if I overdo it. I’ve learnt now to just lie down wherever I am if I feel it coming.
Royal free can refer her to cardiology as it’s best to get everything checked and also it might be a good idea to ask for a referral to the national neurology centre autonomic dysfunction team. They will do the whole range of tests. Big waiting list though I think.
Hope it resolves quickly, horrible and frightening for her and awful as a mum to watch her suffering 🙁 but there are lots of ways to improve things and you sound in good hands with your rheumy
X
I also have lupus, Connective Tissue disease and Limited scleroderma and RA. Just three weeks ago I had same thing happen to me . They put me through pulmonary testing , EKG , Ct of lungs and heart. Everything is normal but they did find from the connective tissue issue I have scar tissue in my lung . There’s nothing they or I can do but rest and not get too tired. So I use Peppermint or spearmint essential oils on my chest and under my neck . It’s working and all of this has stopped for now . It’s aggrivating because it feels like scary palpating and someone sitting on my chest.
Have the cardiologist order her a 30 day event monitor. Similar to a holter monitor but worn for longer. It monitors the heart 24/7 for 30 days. When she has an episode she pushes the button on the little box and it sends the information to the monitoring center.
Unfortunately, arrhythmias are sometimes hard to catch because if a person is not having symptoms at the time the EKG is done, nothing will show and if she doesn't have an episode while wearing the 24 hour holter monitor, nothing will show. Doesn't mean there isnt a problem, just means it hasn't been caught yet. I am not a dr but it sounds like episodes of SVT. I have SVT and what you describe sounds very familiar. In a structurally normal heart it isn't life threatening but doesn't feel so good. The first line of treatment would be beta blockers...
When she has an episode there are things she can do to try and get it to stop like....
1. Breath in deeply and hold your breath for 10 seconds' and 'breath out hard through a narrow tube.
2. Bearing down like she is having a bowel movement.
3. Take a bowl of ice water and dip her wrists in it.
4. coughing while sitting with the upper body bent forward.
anything that stimulates the vagus nerve can stop an episode... Doesn't work every time but does a lot of the time.
Also, have her avoid things like caffeine, cigarettes, alcohol, stress etc as all these things and some others are known triggers.
Hope this helps some
I had an event monitor - and it didn't help at all for what we were looking for. By the time I had placed it in position, pressed the button and it had triggered - the problem had gone. They only happen very irregularly but are rather unnerving!
When did you have an event monitor? The ones they use now monitor 24/7 and auto detect abnormalities on it's own and make recordings on it's own in the event you didn't feel anything. Also, when you push the button it goes back 60 seconds and starts recording from then. If you had one recently perhaps whatever you were feeling wasnt rhythm related and if you had one long ago and are still having symptoms ask for one again. Every event monitor I have ever had did exactly what it was supposed to and even captured things that I didn't even push the button for because I didn't feel it
About 3 weeks ago. It is a relatively small hospital in northern Italy. I expected one that worked as you describe but no - it was like a pendant and I had to position it so for what I needed it was useless - got the a/f episodes though. They had had a different one before that patients couldn't cope with, this was the brand new one. I wouldn't have minded quite so much but I have a co-pay here and it cost me 36 euros to achieve nothing really. Ah well, such is life!!
Awww, yeah that's why 
I dont see how they expect those types to work. Most of the times peoples symptoms last only seconds. That's certainly not enough time to place something and make a recording.
Yes - it was a symptom event monitor I had - I need a looping memory monitor. I wonder if they might have them in the main hospital where the cardiology department is. Once I see the local cardiologist I'll be able to discuss it with her - it was the GP and she knew nothing about event recorders! I realised as soon as I saw it it was probably a waste of time. However - I know how to get it to happen I think: just reduce my pred dose by 2mg! I'm fine at 9mg - have very definitely NOT been at 7mg. So once I'd messed about with the monitor for a few days I put the dose back up so I can function.
Yeah a cardiologist probably wouldn't bother with a monitor like that so hopefully when you do see the cardio they will order a better monitor for you 
However - you do wonder why they bothered buying it in the first place! Though for most irregular arrythmia situations I suppose getting a trace in the first few minutes is a good start! I have been to the ED because I felt awful only for it to have stopped by the time I was hooked up. You feel such an idiot so mostly I have not bothered.
You can get a 24 hour heart trace done. You just wear it at home and then return it for analysing after.
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