Hemochromatosis Support Group

Check the Arrhythmias group for information. Usually "palpitations" are PVCs, or preventricular contractions. Are nonpathological unless you have over 20,000 per day and even then, are likely not significant. They can go on for months and then go away, only to return several months or years later. Can try magnesium but be prepared for diarrhea/loose stools. Also potassium may help. Main thing is to not worry about them...there are a lot worse things in life than palps.

Thanks very much for your reply, kuku. Yes, I realise they're not particularly dangerous, so I don't worry about that, but they ARE very annoying in that they prevent me from sleeping and occur every night (and have done for a couple of years now), so I was wondering if anyone had any bright ideas. I'll do as you suggest - thanks!
I also read yesterday that ginko biloba can help...

YOu aren't alone. I have them ALL the time. They really scare me. they come at strangest times, too. Sometimes they are brought on by nervousness (if i have to speak in front of a lot of people, for example) my heart starts to literally POUND out of my chest, marching to it's own unrhythmic beat. i swear, when my heart starts to really go, you can see my shirt moving up and down to it's beat. it pounds THAT hard. Other times ill be sitting doing NOTHING out of the ordinary and it just starts . .. . pains in the chest and strange skipping beats. its so scary. sometimes i think, YUP im done. this is it. im going to keel over. i get such piercing pains in my heart and such shocking rhythms that i have told close friends, "if i suddenly die, i want you to tell people that i knew this was going to happen. i want you to tell people that i have ALWAYS said it would be my heart that does it to me." i cant imagine that my heart, with all these pains and palipitations, can be in any kind of good shape. this can't be normal, nor can it be healthy.
scary shit.

in terms of what might make it better, i haven't read up on that, but you have just inspired me to! i know that raw garlic and fish oils are realy good for the heart, but im not sure if they can help with palipitations. pass on any good tips you may get and ill do the same!

keep on moving . . .
best,
sally

Oh poor you! Yes I've tried garlic which, although excellent for general heart maintenance as well as cleansing the blood, didn't get rid of the palps, alas.

As I mentioned, ginko biloba seems to help, and the place where I buy my herbal remedies has a ginko and fish oil cap - think I'll try that - thanks Sally!

I see you're in NY, but here's where I buy mine from: http://www.healthydirect.com - they're quite reasonable.

By the way, Sally, I just checked out a US site I occasionally get stuff from and their P&P is very reasonable, even for overseas orders (which is me!). I have just ordered some super-strength ginko. They're in California I think and you might like to check them out...http://www.iherb.com

Hi - I experienced arrhythmia long before I knew I had hemochromatosis. What kind of beta blockers have you tried? My cardiologist put me on Corgard a couple years ago and it has helped somewhat. The nice part is that I can take it as needed and double up on doses as necessary. I take it before I go to bed which helps. My arrhythmia is in the upper chambers of my heart and therefore not damaging to my heart, and once I knew that it made them less frightening. I've lived with them for so long now, it no longer keeps me up, I roll over and go back to sleep. (I also use Tylenol PM to help me sleep if I've had a stressful day).

I've found that stress really makes the palpitations much worse - and that the best way to avoid them is to deal with stress. I avoid alcohol and caffeine, of course. I love lavendar essential oils and just really practice calming meditative thoughts before I go to sleep.

I've also found that IV fluids and being horizontal during a phlebotomy have really helped me over the years. After 15 years of phlebotomies, I have learned to lower my heart rate with breathing techniques. Long, slow deep breaths. Or listen to calming music on your iPod and take your mind off of your body.

I've tried two kinds, propranolol and...er...something else - neither work though, so not much use.

Got them from GP before we realised it came from the HH. They don't frighten me so much anymore (although the stabbing pain does!) but they do stop me sleeping and can go on for hours.

I don't drink coffee but have to admit to a few glasses of wine. Well, one has to have SOME pleasures, no?

Does anyone else have the abdominal bloating, pain, swelling and heaviness? It get's worse the more I need a phlebo...

Chin up, all!

Hi Andrea -
Yes, every once in a while you just need a glass of wine! My cardio said, if you have more than two, just double your dose (wink). And I agree - they don't eliminate the palpitations, but the Corgard does help me sleep better. Once I take one, I'm usually asleep within 20 minutes or so and find that I'm not waking up at night.

And yes - I have abdominal pain/bloating too. All kinds of GI issues. I finally broke down and had upper and lower endoscopies - and found nothing treatable. I wonder what it is about Hemochromatosis that does that to us??

I don't know - I had endoscopes too (very unpleasant!), before I knew any better, and, of course, nothing concrete was found.

I have just come back from a vis to the 'specialist' who I confronted and more or less admitted he knew nothing of the condition and I knew more than he did :-) I immediately went for a ferrtin test and, depending on the results (imo I'm more than 100 after 3 1/2 months!) I can have (how kind!) a phlebo in 2 days time instead of waiting another month. Planning g to dump this guy and get another one...

Thanks for the Corgard tip - will get on to GP about it. He, at least, is a really nice guy and admits he's clueless about illness. I don't mind that, do you? I just can't abide the ones who treat you like an idiot.

You know, I think we're still a mystery to most doctors - even the best ones. I agree, I prefer the ones who admit not knowing over the ones who dismiss you as if you're a hypochondriac. I just joined this support group yesterday and after 15 lonely years with this disease, it is such a relief to know that others also experience heart palpitations, joint pain, headaches, GI issues, etc. and I'm not just nuts!