heart condition

[Evita]

Don't know if anyone can help with this, but maybe writing it down will help me anyway.

I've just been diagnosed with having an abnormal heart rhythm which may or may not link to some serious underlying cause. However, I've been feeling pretty lousy with it: depressed, lethargic, dizzy, breathless, etc. And what I'm really worried about is how I'm going to cope with looking after my 15 month old with this going on. I get in a real fret at the thought of my passing out suddenly when she's in the bath or when she's in her cot in the daytime. My partner often has to go away so I'm here alone and we have no close friends or family around who would even know anything had happened to me.

Is there any kind of social service I could call on to help me in this kind of situation?

Evita, I have a very rare heart condition which was discovered just after birth and I have been very ill with a new baby. I have a great husband, but he has had to leave his job to care for me and the baby. I have recovered to a certain extent, but I collapsed once and ever since have suffered from panic/ anxiety attacks which I have always thought were nonsense. As soon as I feel dizzy I put the baby somewhere safe, then lay down on my back for a while, sometimes breathing and out of a paper bag. I also have a blood pressure machine which is a good indication of whether or not I'm likely to faint. Ask your health visitor at the GP if there are any services which can help you.

It can make me feel restless and not sleepy at bedtime but generally passes so I don normally have a good night.

My DS was 18 months (now 21 months) when I started having these problems. However I did have them once before when I was about 23 or 24, well before DD arrived (I am now 30). It was briefly investigated but nothing found - not even an irregularity. It di seem togo after that so not sure it that was related or not. So not sure if it has anything to do with pregnancy or having a child either. Do you think yours might be related? How old is your child?

I think stress makes my heart worse but I don't think stress causes it, and the consultant seems to agree wth me on that. I have been tachycardiac for a long time now, that was diagnosed the first time round and it was very noticably when I was at the gym before I fell pregnant with DD. My heart rate would make the alarms go off on the machines if I was wearing a heart rate monitor!!! It is strange really as when I haven been under a lot fo stress - OFSTED at school for example - I didn't feel bad at all.

I was thinking of trying to keep a mini diary of how I feel each day and what I am doing that day - see if there is a pattern. Was thinking of doing it throughout February before my appointment in March. Do you think that might be a useful think for me to do?

It is strange 'talking' to someone about how this makes me feel. I try to explain to DH but it is difficult to explain clearly the exact feelings isn't it?

How have you been in this cold weather? My chest is much much tighter and I have felt a lot more breathless.

Not sure about the tape/heart link at all. I think you must have a different monitor than me. My heart monitor didn't run out. I just removed it in the morning and took it back to the hospital. Never did anything with it and never noticed it run out or anything.I just had to keep a record (card to do this given to me) of any symptoms and what I was doing at the time.

Jzee - sorry to hear about your condition. It must be very scary at times for you. Bless your DH too. I hope things continue to improve for you.

BTW, I replied back to you on my other thread. Those things are yours for just postage costs if you want them.

I have just noticed this thread (duh!) and, Hulababy - me too! Just the same. I have a very fast resting rate, and sometimes (thankfully, very rarely these days) I get runs of tachycardia - the longest ever was 7 minutes, and I felt like I was going to faint at the end of it. Mine is definitely aggravated by stress - I went through a bad patch after ds1 was born, which is when I was investigated at the hospital. They gave me a monitor thing to wear which would record my heart rate when it sped up - they were quite impressed by my recordings - I hit double the normal heart rate.

I'm not under the hospital now (hate that expression!) as it seems to have regulated to the odd palpitation. I quite often feel agitated, when I'm not, which I assume is because of my faster heart rate, sometimes feel a bit breathless, but I can live with it. Reading the posts on here I realise how lucky I am - take care, all of you.

Marthamoo - reading some of this makes me feel very lucky too.

My tachycardia appears to be quite frequent and my resting heart rates rarely goes below 90 beats a minute, hence I get tired quite easily. My last big lot of palpatations lasted over 2 hours I was at school (work - teacher) in class - had to leave room and then went home later.

Thanks Hulababy, how can we arrange for the postage etc? I'm glad to have caught you on this thread as I'd lost the other one. I hope things stabilise with your heart.

Hulababy, my dd's 15 months. I don't know if giving birth has made things worse or not. Actually I felt pretty great for the first 10 months of dd's life so probably not.

Does anyone know of a reason why these things fluctuate so much from day to day even if one's doing the same things and all circumstances are almost the same? I just can't get my head around it and don't know whether to plan to do things or not. Some days I feel too awful to get out the house, other days I might be able to.

Hi again. Evita what you're describing about good days & bad days and the way your heart didn't play up when you were on the Holter monitor is totally normal for people with arrhythmias. Cardiologists have told me it's typical for patients to have no symptoms on the days they are tested. One cardiologist likened it to taking your car in for repair because it's making a noise, but then it doesn't make the noise when you hand it over to the mechanic.

I really think you're under a lot of stress (understandably) about your heart & its making things worse for you. And you're right, an ECG attached to you really is reassuring--hence your stress levels went down.

I'm glad you took the steps to talk to another doctor because it really was unthinkable that you'd have to wait that long with these kinds of symptoms.

Not to sound like a broken record, but the skipped beats themselves don't sound like anything to worry about. Even if they seem to happen all day long & drive you mad. What's going to be more interesting to the doctor is the sonogram of your heart. I wonder if they'll find you have a mitral valve prolapse which is fairly common in women & usually benign but which can give you these tightness-in-chest symptoms which you describe. Don't worry, it will get sorted. I hope you've been sleeping better.

expatKat, thanks.

Another very annoying thing unfortunately is that the 24 hour tape monitor seems to have chewed up the tape. I thought that it had stopped but now I realise it's just chewed. So I bought another tape (they seem to be completely normal audio cassettes) and put it in and it's working now but it means of course that all my notes about when / how / where symptoms have occurred will be completely out of synch with what's been recorded. Do you think this will make loads of difference?

Also, does anyone know if nausea, sweating and dizziness are associated with heart things? Am feeling pretty rough again today.

Yes, nausea,sweating, dizziness can be associated with heart things. Do you feel on the verge of blacking out? Sometimes those symptoms can precede fainting. It's Saturday, so is dp around?

Awful luck about the tape. Usually when you get a Holter monitor you also get a number to call ( a nurse, or someone) who can advise you when something goes wrong. It sounds like you didn't, so it was sensible to buy another casette. Don't worry about your record of activities being out of sync with the recording; that's not nearly as important as the actual recording. And anyway it sounds like your arrhythmia is pretty constant/random anyway; it probably doesn't correlate to specific activities (same with mine).

Keep in touch if you're worried.

Evita,

Why not give STARS a phone on their freephone helpline
0800 028 6362

Trudy may be able to give you some more info, send out literature or point you in the direction of someone who could.

butterfly

butterflymum, who are STARS? I've never heard of them.

expatkat, thanks again. yes, like you my weird heart beats are irregular but regular if you see what I mean. I mean fairly frequent but who knows when they'll show or why. I sort of hold onto the fact that excersize doesn't make things worse for me (unless having a REALLY bad day) in general as meaning I don't have some v. scary sort of heart disease. Alas, Saturday it may be, but I am still alone ... sob ... I am a weekend widow, my dp works at weekends. Weekends are the worst for me as every other mom I know is with her partner / family and all the weekly things like playgroups are shut. I usually go to the park or the shops, just kill time. But today it's pouring with rain and the wind is blowing a gale. Poor little dd is having a dull dull day. You're in the states aren't you?

Evita, how annnoying that you & dd are on your own on weekends when there's so little to do. When my heart plays up badly I take the kids somewhere public in the hopes that someone can help me out if things get really bad, (which luckily hasn't yet been necessary). It's odd how ticks & phobias can develop around an arrhythmia. I started to fear isolation, for example, in a way I never did before.

Butterfly's suggestion sound very good; perhaps STARS is linked to the website she mentioned earlier. Maybe this way you can ask for help without putting presure on friends & family.

Yes, I'm in the US until May on a busary/fellowhsip thing. Then I'll return home to London (West/Central area).

It is true that different situations can trigger the feelings of jitteriness etc Sometimes I have been fine for weeks and then we have a 'do' to go to and its off like the clappers!I dont know where you are but Im in Brighton Is that any help?

noddy5, wish I was in Brighton too! I'm in South East London, at the foot of Tower bridge. I always really worry my heart problem is going to let my partner down. A few times recently he's had to cancel doing things that were very important to him. And his father died just before Christmas, a really bad episode for me coincided with the days surrounding the funeral. I could tell dp was biting his tongue with annoyance. HE needed support, not ME!!

expatkat, I fear isolation too. But then sometimes I feel too awful to get myself out anywhere. The moments I dread the most are dd's bathtime when I'm home alone and also when she's napping in her cot in the day. If something happened to me on either of those occasions, well mostly the first one, she'd be totally alone. No-one would know anything was going on as we live here in such an isolated way. It's scary. I really wish I could be somewhere smaller with a sense of community. Never thought I'd say that having been a London lover all my life til now!! What's your fellowship for by the way? Just being nosy now ...

STARS are the Syncope Trust and Reflex Anoxic Seizures charity. They now also include more studies/information on arrythmia on their site and are the lead charity in the campaign to raise awareness of the condition (see my link further down to the Arrythmia Awareness Site.....you can click on the STARS logo at the bottom of that site to link go to their site).

HTH

butterfly

STARS

Arrythmia Awareness Week

Just to save you hunting back through the thread.

The fellowship is for writers & artists. (I write poetry & winning bursaries is one of the few ways for poets to get money )

I had a bad episode of arrhythmia during a funeral too. I kept thinking, what an irony I'm going to die during a funeral

Yes, I'm sure it's hard on your dp. It's hard on mine too. My heart rhythm was a mess when dh and I were on honeymoon; the hotel had to ring an the ambulance at one stage. And he'd worked so hard planning a lovely holiday.

I'm sorry your parents can't look after you for a little while until you get this sorted.

Thanks butterflymum, will check it out.

expatkat that sounds great, the fellowship I mean. I'm an artist and writer too, that's why I asked. or at least I used to be before dd arrived! I haven't done a stroke of work in 15 months now. Feels kind of weird. Can I read any of your stuff anywhere?

By the way, how old is your child and when did your problems start in relation to having him / her?

Evita, arrhythmia started in my early 20's. Childbirth hasn't seemed to have affected it. In fact, my heart is at its best when I'm pregnant, which is not unusual for a lot of women. But for other women pregnancy makes their arrhythmias much worse. Ds is 4, dd is 16 mos.

My work is in 3 places at the moment, 2 American literary journals & 1 British one. I thought to do you a link (because in two cases the work is available on the journals' websites) but then I won't be anonymous. But if you & I exchange emails at some point I'd be delighted to link you up to my work. Thank you so much for asking! It's not surprising you're not writing because it sounds like you're full-time with dd. I only started writng again once we were in a position to organise a little childcare.

expatkat, I didn't have any sort of a problem with my heart before this. Or at least none that I know of. This all seems rather sudden to me. During pregnancy (apart from lousy morning sickness) I felt really well and for the first 10 months of dd's life I felt blissfully well. This all began out of the blue when I took dd to playgroup one afternoon and after striding across a playing field to get there, realised I felt like I was about to pass out, but more than that, couldn't breathe, chest felt tight as a drum, heart all over the place. Then nothing for weeks, then these 'episodes' got more frequent and this constant exhaustion set in. It's already hard to imagine I ever felt well!

How frequently do you suffer from 'episodes'? Are you able to lead a relatively normal life now?

Your posts have been helping me enormously by the way.

I would love to receive a link to have a browse at your work. And I could send you one for mine too if you like?

I first got ill with my heart when my son was 11 months old.I was initially told it was new mum anxiety but after endless tests was diagnosed with arrhythmia I dont live what I would call a normal life but it has certainly improved as I have accepted the condition.Now I moderate things which trigger it and that is half the battle!The initial months were a nightmare and I never left the house alone.The episodes were panic attacks as they always resolved eventually and a serious heart episode probably wouldnt.I think you are probably exhausted aswell.Fast heart beats leave you feeling drained and can last days.It has really helped me to realise that other young people are in my situation too.Keep writing!

noddy5, so do you take regular medication? Will you have to do that forever? I feel like I know so little yet about all this. It's so hard to get my head around. Sometimes apart from feeling so tired I don't feel different to my old self. Sometimes I feel as though I'm on death's door. Sorry if that sounds morbid. But I find myself imagining what will happen to dd and dp if I'm not around any more and it leaves me desperately sad and wishing none of this was happening to me.

I used to do the same but I have been stable on medication for about a year I think there is surgery but as my doctor says allops have risks and it is usually the last resort.Beta blockers are good and in low doses side effects not too bad.I will keep going with the pills for now but if it got worse I would have the surgery.one of the mums at school had surgery and said she got her life back.There is hope!!

noddy5, you said it has helped to know that other 'young' people are in your situation.

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This is one of the reasons that the forthcoming Aarythmia Awareness Week is so important - to make people aware. Indeed, the campaign aims to:

Raise awareness of underlying medical conditions that can cause Cardiac Arrhythmias

Inform people that Cardiac Arrhythmias can exist in people of all ages, including children

Improve knowledge of Cardiac Arrhythmias within the community and with medical professionals

Help increase the diagnosis of Cardiac Arrhythmias in people who may beat risk in order that they may be treated

Improve the quality of life for people living with Cardiac Arrhythmias

Include Cardiac Arrhythmias in the National Service Framework for Coronary Heart Disease
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I do not suffer from Aarythmia, but am involved with the STARS charity who are supporting the campaign (my middle son suffers from Reflex Anoxic Seizures).

It is good to see that some of you are finding it helpful to share with each other on this thread - if you could also in some small way share with others around you in 'real' life, then hopefully more support will be gained for the campaign and more progress made.

Hope you don't mind me adding to this thread now and again.

Take care.

butterfly