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new guy 20 years sufferer


simon greene
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Hi my name is Simon, I am English but I live and work in Thailand.Recently I discovered the Mitral Valve Prolapse Syndrome Dysautonia survival guide book which has made very interesting reading. For 20 years I have suffered multiple symptoms to be told by Doctors I just have bad nerves ????.although I have had many tests carried out on my heart for occasional arrhythmias they have found nothing to be of major concern although they did offer an ablation if my pvc?s became unmanagable.Since reading this book I have recognized many symptoms with toooo.. many to list but the reason for my post is for any help from forum readers regarding my worst problem?. which is?.. When I go to sleep I am awoken by a lead heart and churning gripping middle ?. I sit up and I cannot get my breath I feel as if I am going to collapse my heart is definitely not beating properly and this is followed by violent shaking for 15 mins?..by the time I reach casualty the EKG just shows an occasional ectopic beats??..these symptoms are very worrying and almost always occur 20 mins into sleep although I have had a couple of episodes whilst swimming. It makes it worst living here as the language problem can be difficult, they seem to be always searching for cardiac disease and talking about pain which I don?t have .. They don?t understand our illness which I suppose is understandable in Thailand???my request is if anyone suffers similar problems to me?. then I would love to hear from you

because I can manage my other symptoms but this one almost paralyses me and seems to be happening more frequently.

Many thanks Simon

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Simon - Welcome!

It sounds like you need an event monitor, either a king of hearts that you can push the button and it records what your heart is doing right then OR a Holter Monitor which gives 24-48 hours of continous rhythm monitoring.

It would be helpful to know what your other symptoms are even if you are managing them.

As for the arrhythmia itself, I've found that a beta blocker not only helps with my tachycardia but it also helps prevent much of the arrhythmia that I have experienced. Beware that if you are like most Dysautonomia patients that are medication sensitive, you may only need a very small dose to manage your symptoms. If the doctor's aren't that aware of your illness they might try to start you on too high of a loading dose.

Note - I'm not a medical professional but this is just my own experience.

Even in the US, there are very few doctor's that know about Dysautonomia and even fewer that know how to manage our symptoms. So don't give up just because you haven't found the right doc yet. Actually there are only a handful of specialists I believe all over the world.

Make sure you are drinking plenty of fluids. Many of us need higher sodium intake without sugar. And Caffeine can be tricky on the system too, causing arrhythmia.

Good luck

Steph

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Hello Simon,

I?ve also had many episodes or syncopes when exercising, for me it seems it just makes symptoms like tachycardia or palpitations worse, even days after doing just a light training. And also when going to sleep or lie down I get sometimes palpitations, feels like the heart beats once very strong, then stops for a few seconds and skips beats, so shortly it can take the breath away. But usually it?s over after a few minutes. In your case it sounds very severe, my doctor also talked about an event recorder a few times, maybe it would be very helpful for you. Because the normal ECG or holter register a too short period of time. And with your symptoms I guess it would apply.

The last years I?ve been in Hong Kong several months and had really bad syncopes there, and spent many days in hospitals. The problem was as you mentioned, the doctors didn?t know POTS or NCS and so always treated me e.g. for the irregular heart beat or a high fever (I got there as well, but they couldn?t figure out where it came from). All they did was more or less cardiologic. But one cardiologist once asked me if my doctor told me a website or something written that explains the problem I tried to describe him. He said he?s never heard of it, but wants to read it (he said it?s easier for him to understand when it?s written, because his English is not that good). So I told him there?s a lot at potsplace.com and he printed it immediately and worked through it until the next day. He even wanted to exchange e-mails with my home doctor to make sure of the further treatment. Perhaps you could try that or if nothing works ask a friend to translate (my friends did that several times in emergencies, when they were with me - and it worked).

All the best. Hope you can get better soon!! :)

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When I first came down with POTs I'd wake up with similar experiences and then the shaking would begin. I think most of us refer to these as adrenaline rushes. My whole body shakes and my teeth chatter but I'm not cold. Eventually my heart goes back into rhythm, but these episodes can really wipe you out!

I would either ask for a sleep study so they can monitor heart rate and BP, or do like Briar Rose suggested and get a holter monitor so they can record your HR for at least 24 hours.. You can ask to keep one for a week or more as well if necessary.

Glad you found the board...Welcome!

gena

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Welcome Simon, I agree with Stheph, you should try to get an event monter, it wold help the doctor know whats going on plus help you to know if it more then a POTS thing!

Again Welcome! :)

Amy

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Hi Simon, welcome to the board. I also agree with what ppl have said above...I would look into having a Tilt Table Test, Event Monitor, and Sleep Study. Hope you find the cause of all those symptoms!

Jacquie

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Hi Simon, welcome to the board. I also agree with what ppl have said above...I would look into having a Tilt Table Test, Event Monitor, and Sleep Study. Hope you find the cause of all those symptoms!

Jacquie

Thanks for all your replies...I had never heard of POTS until i came on this website,I will investigate this with the DRS here.As for 24/48 tapes i have had these but with sods law nothing ever showed except occasional ectopic beats.. pvc.....not sure if they have event moniters here but i will ask as the for the tilt test I read about this a long time ago in connection with pace makers..but all the tests I have had they never showed that I was in need of one.....but having read your replies I think when I have these attacks my blood pressure may drop causing me to awaken and then this will lead into a palpations and the heavy heart feeling.I have head an echogram which found nothing wrong with my mitral valve butI I believe 100% something is wrong

as I said before I can handle the other symptoms of churning stomach,headaches,pins and needles,nausia ,shaking,sweating hands,lump in the throat the list goes on but these attack frighten me....thankyou for your replies.Its a bit lonely over here with knowone to dIscuss my problems....THIS WEBSITE IS A BLESSING

brgds simon

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