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Original poster

heart condition

131 replies

Evita · 24/01/2004 16:31

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?

OP posts:
Original poster
Evita · 02/02/2004 10:35

Thanks noddy5. I think things will hopefully feel better if / when I find out what the outlook for the future is for me. At the moment it's such a limbo, I don't have anything to take or any idea of what to do to help myself. I so so so hope it doesn't take forever to get a dr. appointment through.

butterflymum, I will definitely look at the STARS link right now!

OP posts:
Original poster
Evita · 02/02/2004 15:00

Just also wanted to ask my fellow heart sufferers how frequently they feel ill from their conditions? What percentage of the time can you lead a normal life and what percentage are you being plagued by it?

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expatkat · 02/02/2004 15:05

thanks again, butterflymum.

noddy, I've heard good things about the surgery too, though it's not exactly surgery if I understand correctly. Is it "ablation" you're talking about? That's also way in the back of my mind too, like you, if things got worse.

Evita, to answer your q's from earlier. . .I have a pretty normal life except that I've had to eliminate certain things like caffeine & chocolate from my diet because even a weak cup of tea sometimes has the effect of starting off strange rhythms. Also, unlike you, exercise makes me feel pretty rough, but it's hard to know if it's just b/c I'm so unfit after all these years or b/c I'm so afraid of the consquences or b/c of my heart itself. I used to be fit and athletic (I ran & danced quite a bit) so that, for me, is the most disappointing consequence of my arrhtymia. But my doctor says it's fine, I CAN exercise, but I just feel so awful everytime I do it hardly seems worth it. Though I do plan to start again very slowly once I get back to London, perhaps with a partner who's at a similar level.

I take medication sometimes, but right now I'm not on it. My condition is less serious than Noddy's & my symptoms don't seem as bad as yours either, Evita.

Evita, yes I'd v. much like to see your work. I was afraid to ask at first because it sounded like you were taking a bit of a break from it.

Original poster
Evita · 02/02/2004 20:45

noddy5, I was just looking back over this thread and it struck me that you got ill with your heart around the same time after you gave birth as I did, 11 months. Did you breast feed? I kept wondering about it because it coincided with me cutting out breast feeding. It all seemed linked for a while. But now I don't really know.

I feel tired and low today. I've got a few v. lonesome days ahead now as dp is away Tues - Thurs. Poor dd isn't going to get a bath in 3 days!!

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expatkat · 02/02/2004 22:31

Interestingly, some of my worst periods of arrhythmia also occurred after cutting out breastfeeding. I wonder if it has to do with fluid retention. What I mean is, for some arrhthmia sufferers the extra fluids in the body during pregnancy (and breastfeeding I suppose) can actually cause the heart to self-correct temporarily.

My other theory is that the ocytocin or whatever it is that is released during breastfeeding can be very calming, so when you cut out bfeeding & start dealing full-on with the stress (and lack of sleep, often) of looking after a little one your heart is no longer "protected" against stress in the same way it was when you were bfeeding.

Now why you both got symptoms for the first time when your children were 11 months or so is v. interesting. Perhaps there was always a hidden problem with your heart, but then pregnancy worsened it (as I've read can sometimes happen). So that, once you stopped breastfeeding and no longer had the benefits mentioned above, you started having symptoms for the first time. This may well be a lot of rubbish, but I've given the whole thing a lot of thought over the years, and have asked my cardiologist his opinions too.

To answer your question about how often people get episodes, Evita: I think it's just hard to predict. If you're lucky, you'll find that what you have is the kind that is instantly & easily corrected with tablets, and you'll never even have to think about it again. Because that's how it works for a lot of people.

butterflymum, sorry to hear about your ds. I'm not familiar with that condition.

noddy5 · 02/02/2004 22:37

Drinking lots of water helps and so being dehydrated makes it worse.If I drink alcohol i feel ok but next morning the dehydration can trigger it all off.The ablation technique is still a new procedure and my doctors are reluctant to do it at present.It is vital to find out exactly which condition you have as treatments vary.Keep pestering your doc for an earlier appointment.I ended up going to a&e out of desperation and that worked

expatkat · 02/02/2004 23:22

Noddysnap re. alcohol. The next morning can be horrendous. That's why I really avoid binge drinkingnot that I ever did that too often anyway.

misdee · 02/02/2004 23:33

sorry to read about all this. heart problems can be very draining on yourself and your family. i hope you get an appointment thro soon, its taken 5month betweem initial appointment with paed and the one for cardio to come thro for my dd2, but it has gone quickly.

expatkat · 03/02/2004 02:35

Misdee, how awful for you to be dealing with dd2's heart problem. I don't envy you at all--it's that one step worse than having an illness yourself. I hope it's all getting sorted satisfactorily.

misdee · 03/02/2004 09:18

thanks, but i keep telling myself it will be an 'innocent murmur' and they are just being overly cautious of dh condition. i hate going thro all the apointments for my dd and my dh so i cant imagine what its like to actuallly go thro it for myself.

Original poster
Evita · 03/02/2004 10:52

misdee, I'm really sorry for you. I hate it when dd's ill even with a cold!!

expatkat, interesting what you say about childbirth, breast feeding, etc. I've wondered ver similar things. It's a shame you can't get oxytocin in tablet form!

noddy5, I'm doing all I can to hurry along my cardiologist appointment. The 24 hour tape's gone a bit wrong as it seems it got stuck in the machine and the tape stretched so they're not sure they'll be able to analyse it. Have to wait and see. They said they'd phone yesterday but so far nothing through.

Am all alone for next 3 days, boo hoo. May find myself posting on here just a bit too much...

OP posts:
expatkat · 03/02/2004 12:48

When dh is away for work & I'm in a rut of palpitations, he calls/texts me fairly frequently. If he gets no response, he starts to worry. Obviously this has led to a few false alarms, because my mobile isn't always in range, or occasionally I leave it at home by accident. But it's one (imperfect) solution.

Original poster
Evita · 03/02/2004 15:40

My totally technology phobic dp wouldn't have a clue how to send a text!! I've only just got him used to answering a call on a mobile ... sigh ... That's what you get for falling in love with an academic!

expatkat and noddy5 and everyone else - do you feel v v very tired sometimes as a result of the heart thing? Today I've felt all day like I'm carrying something incredibly heavy around everywhere with me. Yuck.

The hospital called and said the 24 hour tape hadn't worked and I have to go back a week on Friday and do it again. Very pissed off about that.

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Clarinet60 · 03/02/2004 15:52

I've had a weird experience along these lines today. I've finally gone to the GP about a long standing problem with cardiovascular symptoms after excercising, only to be told that because I have a low body/mass index (making me ideally healthy), she will check for anaemia and thyroid problems but that's all. She thinks I'm just excercising too much (I told her I wasn't). I'm stunned! After ANY aerobic activity, my head feels like it's full of sand, my eyes feel close to popping out with pressure and my chest feel tight. wtf is going on?

noddy5 · 03/02/2004 15:54

I feel permanently exhausted and have now got used to it!a really bad day would be like the worst hangover combined with a totally sleepless night.Anything more than that im grateful for and a good day usually has me running around like a looney doing all the things I cant usually do and then I am back where I started.We are currently living on a main road and hopefully when we move I will get more sleep and things will improve.Incidentally I nearly always feel better when dp is with me so there is a lot of anxiety to blame in my case..sorry to waffle on...

expatkat · 03/02/2004 16:11

Fatigue isn't a big symptom for me personally, but it does go with the territory.

Infuriating that you have to go back a week from Friday & not any sooner. Also infuriating that you can't get a Holter monitor that doesn't eat tapes!

Noddy's A&E suggestion is interesting & could work. I, too, went to A&E for this and was there all night b/c at first glance my ECG was indicative of all kinds of serious stuff. I was examined by the full hierarchy of physicians, starting with the least experienced & gradually working up to the senior person (who had to be woken). The senior cardiologist decided that, yes, things needed to be investigated further, but that it didn't have to be done on an in-patient basis. I was sent home & put on the "urgent" list--but "urgent" meant a 6-wk wait. (Sounds like 6 wks is actually fast, compared to a lot of other people posting on this thread!) So in my case going to A&E didn't necessarily speed thing up that much.

Another, more positive lesson I learned from that experience is that to a less-experienced, less-specialized physician (your GP for example) your cardiogram with its weird p-waves might look very serious, but to a proper cardiologist the p-wave disruption might just translate to a "version of normal" as my weird t-waves turned out to be.

Not to turn this into a political discussion, but though I love many, many things about the NHS & even wrote a term paper when I was 18 about how the US should have "socialized medicine" or some version of it, this is seriously bad stuff that is being described by us here: the long queues, the Holter monitor that eats tapes, etc. It's mortifyingly bad.

butterflymum · 03/02/2004 16:55

To quote you expatkat "Not to turn this into a political discussion, but though I love many, many things about the NHS & even wrote a term paper when I was 18 about how the US should have "socialized medicine" or some version of it, this is seriously bad stuff that is being described by us here: the long queues, the Holter monitor that eats tapes, etc. It's mortifyingly bad.".

This is exactly why the forthcoming Aarythmia Awareness week needs as much support as possible from those based in the UK.

butterfly

expatkat · 03/02/2004 19:08

Butterflymum: you've intrigued me. What kind of (nonfinancial) support would be helpful? You mentioned in an earlier post that making others aware would be a good first step. But how? I could be wrong, but I find that talking about your health is a kind of social faux pas in the UK. In my experience of living in the UK for several yrs (& shortly to return), there is an expectation of stoicism whereby even your own family/in-laws have the attitude that you should "get on with it." I just can't picture talking to my neighbour about my arrhythmia, even though I recently had an episode in front of her & had to lie down. And then on the train home one day I had an episode & had to call my cardiologist on my mobile to find out how to stop it. The other passengers glared at me for disturbing them with my phone call.

I can see how it would be OK to talk about one's child's ill health, but not one's own except maybe to your closest friends. But maybe I've got it wrong? I'm asking because I truly want to be helpful, not to be testy.

Droile, just saw your post. Good idea to have the cardiovascular possibility checked out--just to rule it out. Being told you exercise too much & that's the reason for your breathlessness sounds daft. See someone else if necessary.

noddy5 · 03/02/2004 19:12

I find it hard to get people to take my condition seriously I think its because its invisible and im fairly young sometimes a bit of reassurance from someone would be helpful and at the very least acknowledgement

misdee · 03/02/2004 19:17

hidden conditons are often questioned by others. i find people looking at me as if i'm mad if i mention dh problems as he is considered to be a 'young, healthy male' and tbh if u didnt see him take his med you wouldnt have a clue unless he blacked out if front of u.

Posey · 03/02/2004 20:59

Wasn't really sure whether to post on this thread but what the hell.
Dh has a heart condition, a very acute onset disorder which started about 3 years ago. I don't want to panic anyone by saying what happened (he didn't have a heart attack) but wanted to agree about the keeping it hidden or it being a hidden disability thing. It took him about a year to trust his health, every little strange feeling, thick or light headedness... every feeling of not quite being well had him rushing to the phone to speak to the cardiology clinic. He wasn't offered any sort of councelling and was discharged from hospital to basically get on with life. It IS a huge shock to your mental health as well as the physical.
Now 3 years down the line, life is pretty normal, many people don't have any idea what he has wrong with him, he cycles regularly and works a normal job.

Don't know if all this makes sense or if its even helpful. I certainly could have done with some forum like this for discussing it in that first year. Good luck to all of you who're going through difficult times just now.

misdee · 03/02/2004 21:09

with dh we werent told much about his condition, most of it i have found out thro BHF and the cardiomyopathy ass. cant belive it will have been 2years in a couple of months since he fell ill.

Clarinet60 · 03/02/2004 23:09

Thanks expatKat. I'm still stunned, as I hardly do any excercise (have only just started and can't even spell it). TBH, I think people just see a slim person and assume good health. It is totally flabberghasting for a GP to be similarly taken in by appearances. I will have to take it further, but I guess it will be difficult. If I go to another GP in the practice, he'll see her notes on the computer. poo.

I went for a little jog on Saturday and I can still feel the results in my head today, Tuesday.

butterflymum · 03/02/2004 23:27

expatkat

Sorry for short reply at moment, will expand when I have time. Meanwhile, read this sample letter (with actual facts/figures). The campaign hopes people will send these to their MP's (this is one way of 'letting others know':

letter 1

butterfly

butterflymum · 03/02/2004 23:28

expatkat

Sorry for short reply at moment, will expand when I have time. Meanwhile, read this sample letter (with actual facts/figures). The campaign hopes people will send these to their MP's (this is one way of 'letting others know' ):

letter

butterfly