sj75

Are ther any jobs within the company that are less physical? my friend was a carer and started to suffer back problems and was unable to carry on as a carer, her work had to try and accomodate her needs so she was moved into the role of care coordinator. Better money and she could do some of it from home when things were bad with her back, other times she was part office based and part driving out to meet with clients.x

i took it for a very short amount of time but not for pots. I was given it for tachy arrhythmias. It really didnt suit me and made me feel very unwell. I was told never to take it again as it could be dangerous for me (unfortunately they didnt tell me why!)I know of a couple of people who have it for Af with no problems but cant be much help re its use for pots, although i thought it was better for arrhythmias rather than for sinus tach.x

I was told by my cardiologist that appart from picking up abnormal rhythms my reveal device is set to only pick up rates below 30 as it is quite common for people to have huge heart rate dips in their sleep. Im not so sure if this is the same in children although their heart ranges at 6 are more similar to adults than younger childrens??

i cant really add much as im in the uk and it seems that our system is very different, but i just wanted to offer my support to as i know what a fight it is to get your child the help they need with education. Push for what you believe she needs, one thing i have learnt over here is that sometimes you need to throw your toys out of your pram (hope you have that expressioon over there otherwise i will sound like a right idiot-lol)to get the desired results.x

think i may have read it wrong-lol.x

yes its paroxysmal meaning it comes and goes. I wasnt aware that they could do ablations in the ventricles, mine was definitely atrial as most of the impulses come from areas around the ?pulmonary vein and sino atrial node.x

im assuming it works differently in different countries?? i bought my own but havnt had to use it yet thankfully. Its just there for when things really flare up, but i didnt realise drs could 'prescribe' wheelchairs. I thought in the uk you had to have an assessment for one by ? occupational therapists? can someone tell me more about how it works in the uk?x

yes i get this to, think its a low o2 sat issue as mine to dip and rise very suddenly.x

i am in no doubt that ablation caused my pots.x

mvdula- i am 100% sure my pots was brought on by my ablation! the change in me after ablation was clear.x

sorry , havnt been on for a few days. Mine started when i was about 15. Even when they first started they could go on for days and would make me breathless, headachy and dizzy. Back then i never really got it checked out. I went to a and e on one occasion but was in nsr by the time i got there. They suggested i went to my dr but as i wasnt in arrhythmias when i went he told me i was too young to have heart problems and that it was probably indegestion!! that put me off going to the dr again so i used to just put up with it. Over the years the severity of it has varied and sometimes i can have months of continual bouts of it and then nothing for a few months, sometimes i get short burst and others longer theres no ryhm or reason to it really but i have been told that for me it will worsen with age but i dont think thats the case with svt on its own? Ive no idea what affects it but i know stress is a huge factor and time of the month to and i stopped caffine which helped. I just have to be careful to look after myself. I was finally diagnosed after collapsing at work (as a nurse in a hospital)and was put into hdu when my ecg showed an irreglular heart beat of 230!! Medication help me to a degree. Even after all these years there is an element of fear when im having bad bouts but in a way it does get easier and you find little tricks to help you cope.xx

i think PAT is paroxysmal atrial tachycardia, (tachycardia that comes and goes due to an electrical short circuit in the heart).x

I agree, its a very personal decision and im not sure that if i had svts that only lasted seconds that it would be worth the risks for me? My rhythms were lasting for hours/days and stopping me from functioning which was why i was advised to take that route. I would speak to an ep (electrophysiologist) rather than a cardiologist about it. As said above the diagnosis is usually confirmed by ep study just prior to an ablation as its quite invasive and if they are already in there and find something they might just as well ablate it whilst there (although some people may need 2 or 3 before successful). I dont think you ever fully get used to the unpleasant sensations in your chest that arrhythmias bring but if you are reassured by the specialists that they are essentially harmless it makes them easier to live with over time? Sorry to soiund negative but sometiomes its better the devil you know then to add other new problems into the mix post ablation. x

i had an ablation in 2006 as i had multiple atrial arrythmias that were badly affecting my quality of life. I cant lie, my pots has been a lot worse since the ablation and it took me 2 years to recover as my body didnt cope with it at all well. Unfortunately it didnt get rid of my arrhythmias either. I hope others can give a more positive outcome but it just didnt work out for me and given my time again knowing what i know now i wouldnt have gone down that route.xx

yes, thats susan we met last year and she has been a huge help and friend to me.x

it would be nice to have a list of potsies from the uk on here as i never know whos from where and the care is so different in the uk to the us. Im in the east midlands.x

im a uk potsie and there are a number of us on here now. Im probably not the best person to bombard with questions as im still on a rather steep learning curve myself but i know a few of the others would be great for that.xx

Im so glad im not on my own with this. Its so scary when people dont understand your condition and fail to even bother trying. I think i am going to push to have it done in hospital for safety sake and because my arrhythmias are bound to start off if im anxious or stressed and i dont really fancy him calling 999. I also worry that nitrous wont actually reduce anxiety or reduce what drilling/pain i experience and i dont remember it helping me much when i was in labour either. I actually wonder if the sedation might be my best option at preventing the stress reduced arrythmias. has anyone else heard that nitrous relaxes the heart?x

i posted a while ago about wether sedation or a general would suit me better the dental work i need doing. The problem i have is that i get a little anxious going to the dentist and since my pots flare up my body doesnt seem to cope with that so well. I get a surge of adrenalin which triggers my arrhythmias and makes me pass out. My normal dentist referred me to a specialist dentist who could do the work under sedation or general and i had my appointment today. He has said a general is out of the question as the nhs will only do extractions under anaesthetic not fillings. He said i cant have sedation as if my arrhythmias start up they would have to call an ambulance and being sedated would cause too many problems. They are going to write to my cardiologist to see if it would be better for me to be at a hospital dentist in case of any problems but they think nitrous oxide and 'wand' local anaesthetic would be best for me as apparently nitrous oxide relaxes the heart?? (not sure if thats a good thing or not??). The wand local anaesthetic is administered via a computer so that it goes in really really slowly through a really fine needle and that way if there are any reactions to it they can stop it immediately, but i dont think that would help if there is a delayed reaction? Any one any ideas as im completely clueless and just want to get my teeth sorted. Its so annoying to think i used to just book my appointment at my dentist and get everything done without any hassle but these days everything seems like such a song and a dance and its getting me down. The dentist had never heard of pots and just didnt get it (in fact trivialised it)and seemed to think it was something to do with the anxiety?

thanks for the update michelle.x

Did anyone find out if we need to reorder?x

I have these as well and get really long runs of them sometimes that make me feel really unwell and it can sometimes go on for a few days. My cardiologist has says just to try and take it easy while it is happening as they arent dangerous in themselves but if they make me feel like im going to pass pout or am short of breath then to seek medical attention. Mine sometimes turn into af which i find more unpleasant but also gives me the pausing thumping feeling so i would definitely get the ecg done if i were you just in case they are not ectopics.xx

i also ordered a tee shirt and dvd a few weeks ago.xx

maybe i need to try to limit my sleep. I really did have the first good nights sleep in ages but have just felt awful for it all day. Admittedly i probably did get dehydrated overnight as it was warm in the room but i couldnt leave the window open as the wind outside was battering the blinds. Really hoping tommorow is a better day. thanks guys.x

i had a fantastic night sleep last night (doesnt always happen)and now today i have had the shakes, sweats and struggled to be able to string a sentence together let alone much else, my visions not been fantastic either. Its not the first time this has happened but im completely confused by it. p.s I have the adrenergic form. today i definitely feel confused.com. sj.x