tilly

I thought that 60 - 100 is now cosidered the normal ... i have "ist/pots" and thyroid disease ..... and my heart rate is all over the place when i am sitting still it will still keep going up /down even the doctors have seen it is erratic ( is this how yours is ?) .... mine will keep fluctuating beween 78/104 whilst sitting or lying down and im not even moving ..... and when i stand and move around its up 120/30/40/ and it also gives burst up to 130/40 for no logical reason when i am still ? ...... and obviously greater again if i try to do any activity ......... Most days my resting hr is 100 .... I also have thyroid diseas and take only 25mg tyroxine ... i am always tired and when i have my b/test done it is still only just in the reference ranges . and my doctor never want to increase the dose ... i have always thought it may be they don't iincrease it because of the tachy ? tilly

I thought it was just me feeling this way ... i have had bad reactions and i am also sencitive to medications even at small doses ... I was given bb and when they did nothing the dose was increased, this sent my heart fast and irregular the pharmcist said this was not a good sign it was so hard to get off them ...... i am terrified now to try anything else at all ..... which is not good eighter because i know that like you are saying that medicines where discovered and help so so many people (and they do) ....... I am also sencitive to antiinflamatory medications they cause me to get hives type of rash allover my body and others have bought me out in what is commonly termed a drug rash .... I have also suffered with arthritis all of my life and have had to get by with coping strategies, i suffer pain to varying degrees every single day .... I think there are just some of us more sencitive than others, it must be in our make up ...... but i have always felt like it is just me frightened of the medications ....... i Am currently having the dilema of taking statins as they are clearly making my arthritis an muscle problems worse and at present time i am being asked to try the antiarrythmic drug verapamil and these are contraindicated with the statins .... and i sit here not knowing what to do ..... tilly

Thank you all so much for your kind welcome .... i intend to send pm's to all of you i have been very poorly with my condition and some days i can hardley leave my bed, the fatigue and tired ness are all consuming, i read all of you points about doctors having little knowlege of this debilitating condition ... i was thrust into a world of utter disbelief when i became ill .. i truely did not know what had hit me, it has now been two and a half years of suffering it to a severe degree ... i have read that it is a life changing event an that's for sure ....... i struggled for two years in and out of the hospital and literally being sent home in the same state that i was addmitted ..... high heart rate dizzyness and extreme tired ness .... the heart rate being the main thing that has been invesigated, with ecg tapes and self activating tapes .... the doctors kept on saying your a mistery we don't know what is wrong, and then i would be on my way home yet again .... the cardiologist that i eventually saw said that what is happening is rare and that i was one of a very small handful of people he had come across .... when on the heart monitor they could see that my heart rate was all over the place everytime i move up it goes 114-129-133 just by moving around and when i stood up and walked 150 plus they looked on virtually scratching their heads ..... also i was having big fluctuations in my bp, and i can not do anything i am constantly compromised by the high heart rates and it is hard to get anyone, doctors to understand just how debilitating that is .... i have lost 95% of a normal life .... i struggle to get through each day basically managing the best way i can and this has only come with help from people like yourselves .... i want to help in making more awarness of pots and ist ... my cardio says it is pots what is happening to me but he writes ist on letters about me he says there is no definitive test .... they are overlapping syndromes ........ can you all relate to this situation ???? ..... kind regards tilly

Hi to everyone i have just joined the group and i live in the uk, I have not found any information anywhere or any support groups here for people with pot's - i have been diagnosed .... ( "well it's a working diagnoses with "ist" / pots") and have felt quite alone with my problems of the tachycardia and the tiredness and fatigue ... it has been difficult to describe to doctors what your heart rate is doing every time you move ..... they have seen how it is on the ecg tapes and so on ( hence the diagnoses ) my cardio says it is rare what is happening and other doctors say its very unusual how my heart rate accelerates when i move .... i look forward to sharing my experiences with you ... Tilly ...