Hi Guys not been on a while as health been on a roller coaster. You all know. I have prolonged qt as it is known. Means heart beats in a prologed way. Have atrial fibrillation as well. And today told I have SADS sudden arrythmic death syndrome. Anyone lese been told they have this.
Yasemin
I have heart failure of some sort, just waiting to find out what sort. Very scared.
my darling you and me both. Lets pray for each other.
You're on xxx
Thank you my angel xxx
Hi all,
Fingers crossed for you all. I was told last week I have a significant heart murmur. Nothing else was said so I guess I shall just forget that they told me! The doctor wasn't too worried, so I have decided that I shall not be either!
xxxx
I also have af is this common in bd
Oh heck peeps.........my very best wishes go to all of you with the heart failure problems ! Mwah ! 
I went through heart failure in late 2010 through 2011 with an awful lot of water retention due to a rogue diabetic drug which is now withdrawn in the UK and USA.
I was so lucky to have had it diagnosed and treated quickly enough to save my life so my thoughts are with you all at this very worrying time.
Very biggest hugs darlings and fingers crossed that you all get it sorted out quickly.
Tootles xx
So can it pass then? I thought it would be permanent. If that's not the case I shall feel so much better about it. The stats I read (I know, I know, but I couldn't help it) weren't very reassuring.
Yes Di.......In my case it has passed and I no longer have heart failure symptoms hun !
Mine was caused by the diabetic drug called Rosigiterzone which the BBC did a warning programme on and it was immediately withdrawn from use the next day in the UK. It was already withdrawn in USA.
Anyway, symptoms were massive weight gain (I am very heavy anyway but went from 20 to 25.5 stone.) My legs were absoloutely huge and started to burst into big blisters flled with water which split and ran down my lower legs and burnt like a sort of acid, yellow chemical. I am talking multiple blisters all over the lower part of both legs. This had be washed and dressed evey day at first and then less per week as time went on for over a year by the district nurses. I now have port red stains on both legs all around up to mid calf level.
I was very dizzy when I managed to get to my feet and started blacking out because of the liquid pressure inside my skull on my brain (once in the neurologists office which caused complete panic). My eyesight was very badly affected and if I turned my head to either side it all went black with the fluid in my skull pressing on the optic nerve. I no longer fitted into the MRI machine !
I was wheezing in every breath at one stage let alone trying to move and the dizzyness was partly due to lack of oxygen because of fluid on my lungs. The headache was continual and unrelenting as you can imagine. I couldn't lay down becuse I couldn't breath.
The treatment was to obviously stop the drug that was causing the problem and take a huge amount of water retention tablets. 4 furusamide and 4 spiornolactizone a day. This caused an obvious absoloute constant peeing for england so much that I couldn't possibly hold it enough to get to the loo and was padded to the hilt with incontenence pads like a sumo wrestler. I found I had MRSA twice during the whole thing and had enormous doses of antibiotics which had the usual effect of chronic dihorrea.
They obviously tried to admit me to hospital and I refused to go with my fear of bacteria and agorophobia so the district girls did an absoloutely spendid job.
I am glad to say that I have now lost 6.5 stone in weight which was all due to liquid retention, and everything else has returned to normal limits. I am now 19 stone and size 24 clothes and although I have severe mobility problems and the muscle damage on my legs is extensive I get around a lot better than I did then.
Heart, lungs, eyes and brain are now back to normal thankfully. I still take water tablets each day as I obviously have a problem on that count anyway but only one of each kind now.
I was extremely lucky to have survived this so I hope this gives you some hope for the future Di hun ? And everyone else of course !!
tootles xx
Sorry...meant to add the pulpitations and irregular heart beat problem resolved itself and I didn't have to go for the restart paddle thing !
xx
Oh there is hope! I've been told that 4 years following diagnosis there is an approximately 50% survival rate. And, of course, I don't envision myself being in the surviving half - who would!
I have the weight gain problem and yes, it is fluid, all over. And the confusion and forgetfulness? Fluid on my brain. The can't breathe? Fluid on my lungs. So this recent nose-dive I've taken is all down to this. In strict Behcet's terms I am a lot better - few ulcers, not much joint pain etc. It seems the Aza works for me, There is definite damage to be seen on my heart muscle though, and that won't repair itself and the damaged area is stiff,so it doesn't pump so efficiently. So I don't think my recovery will be as complete as yours but any recovery would be good.
I don't get palpitations or fluttering, which I think come from atrial damage rather than ventricular. I could be wrong because I've never understood the heart in any great depth (although I could write you a thesis on the change from foetal heartbeat to extra-utero! It was the thesis topic of one of my degrees!).
Certainly sounds very similar in some of the symptoms to mine doesn't it ?
I was told that time was of the essence when dealing with this type of problem because obviously the longer the organs are under pressure from the excessive water retention there is a bigger chance of them giving up under the strain so the very heavy amount of water retention tablets were very necessary despite having to go through the constant feeling of being a tap left on full blast. Little cost really compared to the results that could have occured if left.
I don't know what water retention tablets you are on hun but the doses I have explaned here will give you some idea of what is required so perhaps get to see your GP asap and get some more sorted out if they agree this is the course of action to follow?
I was very, very frightened and once the water started coming off and with the weight dropping off rapidly (3-4 moths to lose the first 4 stone and then slower but regular loss) I felt my whole health improve dramatically. Every week I felt a lot better and didn't really realise how very low I actually was.
I am glad this has inspired you to get going again hun, good luck on getting it sorted soon.
tootles xx
I forgot to say that a crucial part of the treatment is to lay with your legs up relaxing on a bed so that your legs are rested and loose and about level with your heart (eg a relaxed slouch position on the bed) for at least 18 hours in 24 so that the heart doesn't struggle to push blood around your system and the fluid doesn't sink to your ankles. So no easy recliners or sitting in the easy chair hun......bed !!
Hi Jazzy21...love the name! do you mind me asking what your symptoms are? Just want to see if is similiar to how I have been feeling.
Big hugs
wens
x
I have a fluttery feeling in my chest. Feel my heart beating in a funny rhythm. Also very poor balance and dizziness.
Thank you for your help. This is all ringing bells.
Weight problem
Skin Problems
Bowel problems.
Gastro problems
Has anyone had any problems with their liver due to the behcets disease?
