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Heart Condition 2

51 replies

expatkat · 24/02/2004 15:17

Does anyone know what happened to the Heart Condition thread?

Evita, what's the latest? Did you finally get a second 24-hour monitor to wear? Any results yet? Is everyone else feeling OK?

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Evita · 24/02/2004 16:12

hi expatkat, good to hear from you. The other thread sort of died out. I kept vaguely trying to revive it but I guessed I'd probably bored everyone to tears!!

Well, I did get the 24-hour monitor done last weekend so have to wait a bit for it to be analysed and then to get an appointment to see a cardiologist. No idea when that will be.

How's things with you? How's the writing? Where did you disappear to?

expatkat · 24/02/2004 16:17

Evita, I actually think the thread was deleted. If you search for it, it's nowhere to be found. It's not old enough yet to have been archived.

I was traveling a bit, visiting family etc. The writing is OK, thanks. Are you still feeling anxious & sleepless or is that improving now that you know you're on track to get help? Are your symptoms pretty much the same?

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butterflymum · 24/02/2004 16:21

Here is a link to the first thread for anyone who is interested in reading it Heart Condition .

butterfly

butterflymum · 24/02/2004 16:23

PS

Was wondering what had happened to you two.....the first thread is still on the health board, it is just pretty far down it.

noddy5 · 24/02/2004 19:30

Im glad I found this.I thought it had been deleted for being too miserable!I really wanted to ask you all if you have trouble sleeping.This is my main problem at the moment.I tried valerian tea and it made me very dizzy I dont recommend it for people with heart problems!Any suggestions for an alternative?

Hulababy · 24/02/2004 19:39

Hi all! I am still around but have had some problems with my heart recently - playing up more than normal. Think it is a mix of stress (work), cold and exercise (no lift so 139 stairs to my apartment). Seeing the consultant again mid March so hope to know more then.

Will be back later.

misdee · 24/02/2004 19:40

dh was suffering palpations last nigth and dizzy spells. poor bloke.

Evita · 24/02/2004 21:06

Good to hear from you all again!

Noddy5, yes I get TERRIBLE sleeplessness. It seems to come and go though and I think some of it is definitely stress, some of it is due to having v. bad palpitations / breathlessness and it waking me up every time I'm near to sleep, with a jolt. Horrible. I can go 2-3 nights with only 3-4 hours sleep each sometimes. Makes looking after dd v. difficult.

expatkat, I'm pretty much the same really. Have had quite a lot of stressful things going on in life in general so have been feeling v. low and tired and haven't had the impetus to chase hospitals though it stresses me out even more that I haven't done it. I do hope to hear from the hospital soon though about the results of the 24 hour tape. And I'm hoping the next few weeks will be a bit easier life-wise. When are you back in the UK?

Evita · 24/02/2004 21:07

Actually I don't think I mentioned it on the other thread but it seems as a v. preliminary reading I may have something called Wolff Parkinson White Syndrome. But that was just on an ecg reading by one of the nurses.

Evita · 24/02/2004 21:07

Good to hear from you all again!

Noddy5, yes I get TERRIBLE sleeplessness. It seems to come and go though and I think some of it is definitely stress, some of it is due to having v. bad palpitations / breathlessness and it waking me up every time I'm near to sleep, with a jolt. Horrible. I can go 2-3 nights with only 3-4 hours sleep each sometimes. Makes looking after dd v. difficult.

expatkat, I'm pretty much the same really. Have had quite a lot of stressful things going on in life in general so have been feeling v. low and tired and haven't had the impetus to chase hospitals though it stresses me out even more that I haven't done it. I do hope to hear from the hospital soon though about the results of the 24 hour tape. And I'm hoping the next few weeks will be a bit easier life-wise. When are you back in the UK?

expatkat · 24/02/2004 22:10

If you do have Wolf Parkinson's White, I believe that's v. treatable. Sorry to hear things haven't improved. The sleeplessness thing sounds awful. Everything you describethe stress, the sleeplessness, the palpitationssounds like one huge & very unpleasant vicious cycle. Poor you. I'm back in London in early May.

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triplets · 24/02/2004 23:53

Hi Evita,
I dont know why I havent seen this thread before, as I too have had a scary time recently. My story is very complicated, I lost my 14 yr old son in 1994, he collapsed and died instantly in my garden, no exact medical explanation was ever found. Because of Matthews death Harry and I were sent to London for tests, they discovered that I have a leaking mitral valve but reassured me it was very common and would not cause me any problems. Eventually in 1998 at the age of 46 I gave birth to my wonderful(though exhausting) triplets, Rebecca, Thomas and James, the result of three attempts at ivf the third one using donated eggs. Then last Oct I began to feel really unwell, very dizzy, panciky, sweating etc. After three or four episodes of this I went to my GP who basically said I was having a panic attack and what did I expect at my age with three x five yr olds!! Well a few weeks later my heart was racing around I felt so dizzy, I went upstairs and down I went, not really passed out, I poured with sweat and Harry called the doctors. They told him to take me straight to our local hospital were I was put on an ecg, it was normal! Exactly two weeks later whilst crossing the road to pick the kids up from school it happened again. This time Harry put me in the car and took me straight to the doctors, he kept me on his couch for almost two hours, did all the basic tests, nothing. He then let me go home, said he was certain that nothing had happened but would refer me to a cardiologist. The cardiologist listened to my story, especially about Matthew, so because of my concerns he put me on a Novacor monitor for a week....nothing. I have an echo every three years because of my mitral valve and had just had that done.....normal. So as the symptems were still very much going on my doctor took lots of blood tests..........all normal. So in the last few weeks I have been trying to help myself. I do believe that stress can be the cause of all this, my life is very stressful, now 52 with 6yr old triplets, still have night sweats after going through an early menopause, always missing Matthew, that is such a bewildering, painful, awful thing to live with every day, that alone makes my heart feel as though it is being squeezed with pain. Just over a week ago I went into our local Holland and Barret shop and found myself pouring all of this out to the assistant, she listened and said that in her opinion it is all a build up of ten years of stress which I never can deal with because of my hectic life with my trio. She recommended two supplements to take, I do already take magnesium, she sold me St Johns Wort for anxiety and vitamin B2. Now I have only been on them for 10 days but I do feel 50/60% better, I am not THINKING about it all the time. I have an appointment to see the cardiologist in April and I am going to ask him to thoroughly test me for all the syndromes that affect the electrical field around the heart, I NEED to know that what happened to Matthew is not going to happen to me, especially now that I have my three special ones, also if I DON`T have any of the syndromes then I will know that I did not pass anything on to Matthew. I can also tell you that I felt pretty much ok tonight until I read this thread, and now its made me feel anxious again, my chest is feeling tight, but then again I am very very tired and should have been in bed two hours ago! Evita, just know that you are not alone, it is easy to say I truly know, but worrying really does make it worse. Try the St Johns Wort, it has helped me, take care and I wish I was nearer to you, I am in Kent nr Dover.

misdee · 25/02/2004 07:52

oh triplets, thats so sad. u have been thro so much. have they done echos and x-rays?

hope things improve for u soon, so sorry to heat about matthew.

Evita · 25/02/2004 09:49

triplets, what a tragic, truly tragic story about your son Matthew. It's every mother's worst nightmare to lose a child and so suddenly. No wonder you have stress etc. And it must be hard work with triplets! I have a friend with triplets and she's permanently knackered. But they are amazing too I'd imagine?

I think you're completely right that stress makes things worse. I know it does for me. Sometimes I don't know if I'm having a bad day because I'm exhausted and stressed out or if it's truly becaus e of my heart.

noddy5 · 25/02/2004 13:16

Evita a friend of mine and her son both have WPW syndrome and have both had 100% succesful treatment for it.The doctors say they may test my son when he is older as they are not sure if mine is genetic or not but as no one has died young in my family from a heart condition they think its unlikely.My ds is 9 and I watch him like a hawk for signs I am a bit tragic really¬!I am not sleeping at all at the moment and I am worn out have started getting that spacey feeling which I hate and my legs are like jelly so plan to rest for a few hours today and hope that helps

expatkat · 25/02/2004 14:23

triplets. . .was the possibility of long QT interval every discussed with regards to Matthew? I'm not a doctor, but I read a lot of medical papers (& come from a family of doctors) b/c I'm very interested in all this. I gather from my reading that a lot of sudden death from arrythmia is due to something called a long QT interval. So the way that Evita has a weird "P" wave and I have a weird "T" wave, others have a long QT interval. I suspect that even 1 ECG would have told your doctor if you have that or not. So you obviously don't. In addition, the echoes every 3 yrs to check on your mitral valve prolapse (which I also have--very common), would give the doctor further reassurance that you don't have something seriously wrong with your heart. The symptoms you describe sound like classic panic disorder, but a good cardiologist wouldn't stop at that. . .so I'm glad you wore a monitor for a week, etc. (You must be getting good care.) Don't underestimate the exhaustion and worry those triplets are causing you, or the grief about Matthew. If you were in the US you'd be referred immediately for psychotherapy, as it could help you exorcise those troubling feelings, putting you in touch with them so they didn't sneakily appear in these physical ways. WIth all you've been through, have you never tried therapy? With what you've been through, you deserve some attention to yourself & your feelings.

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triplets · 25/02/2004 16:54

Hi everyone,
Thank you all for your kind words. No I have never had therapy, I just keep dealing or trying to deal with things myself, not that I have ever been offered therapy anyway. It has been hard, not only the awful pain of losing Matthew, but just living day to day with my three monkeys! It was far easier when they were babies and toddlers, it was still hard, but not stressful. They are magic and I just cannot imagine my life without them, as I type that a thought came immediately into my mind, I once thought that about Matthew, now I do have to live without him, oh how I miss him, he will be 25 this year, unbelievable. When he died no one mentioned Long QT,through my own research in the last ten years I have learnt alot about conditions to do with the electrical field, the thing about them is that those conditions are not detectable at a post mortem because the heart has stopped, So in Matthews case I am never going to know, that makes it so hard, although I try and look at it this way if he had to leave us he did not suffer as a child who has died of cancer, do you understand? Anyway I must go, I won`t be around now until Sun as I am going to France tomorrow with my best friend from Cornwall and have two nights just to be me! Already I am feeling guilty! Love to you all. xxx

Evita · 25/02/2004 20:47

gosh, triplets, don't feel guilty, enjoy your break!!

Noddy5, you sound a bit low at the moment. I know the empty head / trembly leg feeling only too well. Usually with me I'm sure part of my sleep problems are 'self inflicted', i.e. I wake at an absurd hour, 4am, and lie there with stupid songs going round in my head and thoughts of morbid things happening and just can't get back to sleep. This morning I had the theme music to 'Fingerbobs' which dp just bought on dvd for dd as he loved it as a kid. If I hear the line 'Yoffi lifts a finger, and a mouse appears' one more time I think I may have to lobotomise myself.

triplets · 01/03/2004 12:26

Hi everyone,
Evita are you feeling better? I am now sure after having almost three days off from home, the children and husband, stress is what is making me feel so ill. Whilst away I was absolutely fine, I read, shopped, ate, slept in peace. I am still taking the St Johns Wort and vitamin B2, so maybe they are helping too. I`ll let you know how I am at the end of the week!

Evita · 01/03/2004 20:40

Hi triplets, glad you had a good trip. Yes, yes, yes, stress makes EVERYTHING worse. Especially when it's pent up stress. I find often that if I even have a good old weep and let it all out to dp or any other poor victim I feel physically better afterwards.

triplets · 02/03/2004 14:30

Thanks Evita, how are you now?

Evita · 02/03/2004 15:40

I'm up and down. Not too bad since last weekend but the 10 days or so before that were pretty rough and I started getting very scared about it all again. Well, I get terrified of dying and leaving my little one with no mom. It keeps me awake night after night and of course that makes my heart symptoms worse and makes me feel them more etc. etc. I'm still waiting for the appointment with the cardiologist. Trying to be patient. Y'know.

noddy5 · 02/03/2004 15:44

Evita I had a session of reiki today in which I had really bad palpitations for about a minute followed by complete relief.She is sure she can help me relax and cope with this better-maybe you could try it.I have been feeling bad for about a week too hopefully I will sleep following this treatment.Hang in there I know how scary it is and have also stayed awake worrying about my ds being left with no mum but he is nearly 10 and Im still here!

triplets · 03/03/2004 13:53

Hi,
Just had a huge row with Harry and instantly got palpatations and now feeling shaky, more and more believing that this in my case is all stress!

expatkat · 03/03/2004 14:32

noddy tell us more about the reiki. How many times a week do you need to do it for it to be effective? And what is it exactly?

For me, pure happiness (though so rare!) is an antidote to heart symptoms. When I'm happy & anxiety is at a minimum, I hardly ever get symptoms. So I agree with the rest of you in thinking stress is a huge component. Anger apparently can be too. So feeling trapped or resentful of dh's lack of attention/contribution can (as it did in my case) bring on palpitations. I wouldn't go so far as to say anger sets it off for everyone, but it did for me, and is apparently not that uncommon. They say the same about panic attacks; the the underlying psychological cause is often anger.

Evita, earlier in the thread you said you had no idea when your appointment would be. Is that still the case, or have you at least been given a date now?

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