tilly

Hi Shannon .. I had a gastroscopy because I had been suffering heart burn for so so long I could not and still can not lye on my right hand side because of the pain intolerable heart burn ..... the test showed I had osophogusitis and a hiatus hernia , which explains the pain when lying on my right hand side and the picture of the oesophagus was really inflamed ..... I tried to watch what I was eating and I find pastries, any thing spicy, which I do not eat at all now will make matters much worse ..... I take gaviscon and gaviscon tablets and intermittent ppi's .... my doctor tried to say it was stress related because of my tachycardia ... and the test showed that it was not stress after all ! ....... I also can't stand anything pressing on my abdomen like trousers jeans, belts ,girdles, ... the pressure even slight will cause the heart burn to flare ..... Can you tell me do you ever get pain when swallowing like you have tried to swallow a (brick) as though you oesophagus has gone into a spasm and it is really hard for it to go down ?? i get this intermittently and i thing it is to do with the ANS .. i think it affects different parts of you body at different times ?.... tilly

Has anyone ever tried acupuncture for their wide spread fibromyalgia pain ... I am thinking about giving it a go .. are there any contraindication with POTS? ... my therapist say's it can lower your BP? ... I have had pain injections and physio therapy but they have not really helped as the pain and stiffness are a constant feature, presenting at differing rates depending on what you are doing for instance sitting to long at a desk .. standing or walking anything where you over exert can trigger a worsening of the problem ?.. Along with seizing up where by you can literally not move with out the aid of someone or something to hold on to until you become mobile again .. It is a vicious circle ?. i also have more than my fair share of my back going .. it sort of snaps and then i am left totaly imobile for some days untill a gradual progression on to crutches it can take two to three or more weeks before i am back to a decent level of mobility ..... I also have spondylosis throughout my spine and again injections have not helped the only way I cope is by pacing myself and massage ....... any tips gratefully received ....

Hi Persephone .. can I ask you What tests you have had done to diagnose your stones ... also did they pass on their own ?... I have had similar happening in past eighteen months now ... I have been hospitalised with renal colic, they did an ultra sound and a plain x-ray ... that showed a tiny thing in my bladder .. the pain was terrible like I had had a big operation ... I did have some visible blood when in the A/E dept ... I have heard that the stones can be tiny and cause a lot of pain .... the pain seems to be coming on every day intermittently, although on the admission to the hospital I had the pain constant for three weeks unrelenting and was in a lot of pain ... can't seem to be free of it at all .... I did not have any problems like this before I had pots .. I also have IST ... I often wonder if the kidney problems are related to the fast heart rate, but then everyone with stones would have this problem .... Just to had, I do drink a lot of water but I have spell of going for a pee quite a lot and frequent in the night could be five times ... and then a spell of the opposite hardly going and doing very little ..... even though my fluids remain the same ...... also I have huge burst of tachy after I have been to pee !! .. does anyone else notice this?....

Hi Flop .. I too suffer with heat intolerance, I go bright red .. I hate it .... I firmly believe it is to do with hormones and ANS .... mine has been worse since having POTS/IST ..... I think heat triggers it along with the hormones ...... although I have gone through the menopause, I still feel I have symptoms once a month where I will get hot flashes and these are slightly different as they feel like a flush all over your face chest and body you feel it go over you like a wave ..... where the heat intolerance is just that, you are literally intolerent to a warm environment, it is as though you body can't tolerate and adjust to it anymore ...... what I do is this ... I wear all 100% cotton clothing where ever possible like underclothes t-shirts and try not to wear any nylon materials as I find these seem to fuel the situation so to speak ..... I always take my coat off if I go into the shop as you have mentioned they do turn the heat up now here in the uk ..... since having this ANS problem I hardly ever go to the shops ... I have also found that when I get a burst of heatintolerance, if i am in a shop, if i do not react to it quickly ( like getting out in the fresh air ) it will result in it triggering an SVT ... Re having to keep your environment cool with fans and such I am the same ?.... but what also happens to me is ... I get a cold sweat, I wake up covered in dripping cold sweat my body is cold to touch, so how can you sweat when you are cold ?... absolutely soaking enough to have to change the bedding ?.. so what is that caused by ? Once again I think hormones ? it definitly is not in your head ..... tilly ..

Futurehope .. thanks .. i see what you are saying ... i am definitly not like others anymore, i have felt alone and lost with this illness, and the done thing is to say "yes im fine" when asked how are you ... i do not think there is any other conditon that is so so difficult to talk about to anyone friends family even the doctor ..... no understanding when you try to talk about it, frustration may have been a better phrase for it ....

Hi erika ... why do we feel embarrassed about being ill ... i know what you are saying i too feel this all of the time ...... being constantly dragged down by this horrid illness like you say ( no one gets it) who would beleive! only us who know how hard it is every day to struggle to care for yourselve let alone try to entertain or help care for anyone else ..... and to try and reshedule it is going to be the same senario again ... take today for instance i had said i would visit my son but you can not plan one minuite you maythink you have the capability and the next you have to lay down before you fall ...( tiresome ) this is my catch phrase for it ....... like Mrs bursham ( amy) say's "we look so normal" some of us positivly healthy ..... i would like to hear if anyone knows why we feel embarrassed at being ill with this condition,

Hi .. i would like to ask how commom chest pain is with pots .... i have a dx of pots and ist ... and i get chest pain intermitently ....... like the past couple of days, i have woken with it ... sharpish in the dead centre of the chest and it will keep coming on in waves for an hour or two ........ i get this every now and then but when i do i seem to get it over a few days and then nothing for weeks...... is this a common symptom of pots .... even though i have had it before it still fills me with trepidation as you never know if your going to end up at the hospital ...... tilly

Thank so much for all of the imput here .... Erika ..i find when moving about the tachy and breathlessness symptoms keep interfering with movement .. i find i can not take a full breath in all of the time and if i don't sit and get things under control it gets worse and then if you get anxious it makes matters so much worse .... Kirsta ..... the reclining chair sounds a good idea i have a recliner and do sit in it periodicaly through the day insead of lying on the bed .... The hydration thing! ... I am constantly thirsty and i have a bottle of water at hand all of the time ... i also wake up at least every half hour for a swig of water through the night .... have done this for so long now i cant remember when it began ..... This morning i tried to drink plenty before gettin out of bed .. i woke at 5am and glugged half a bottle down and then went back to sleep but had further drinks before rising and i can say there was no difference .... i think this may be because i am always drinking anyway ..... it is so hard to stay on top of this illness i crumble every now and then because i think ( i may have said this before) ..it's just like you have a broken metaboloism you just are not workin normally, which i know is true ... but i keep asking why ! ..... what ever happened to my body ! tilly

Does anyone know why symptoms are so so bad in the mornings when you get out of bed ..... my mornings are so symptomatic with the tachycardia breathlessness ... by the time i have walked to the kitchen my heart is going up and down really high upto 144 and then it will subside only to gallop off again i get a full and out of breath feeling i end up having to sit down and can never finish off any tasks ..... I have resorted to sitting in the kitchen whilst trying to make a cup of tea ..... we don't have a large kitchen where you have a table and chairs so i have just had to put a stool in there for now ..... and again all through the am period i have symptoms of high heart rates dizzyness a multitude of horrid symptoms which mean i have to constantly keep sitting or lying down .... even have to sit now at the sink to wash as my heart rate is constantly gallopping to 160 with little effort ...... when i have to describe to anyone what is happening .... i just say i am broke i do not work normally anymore ....... i know all of us are having a touch time of it with this horrid pots symdrome .... but why are the mornings worse ..... is it because we have laid down all through the night ?......

Again thanks so much for all of the replies to this topic .... the one thing i find most upsetting is this .. the way you end up feeling bad about yourself, because of their lack of knowledge ..... i have tried and tried .... it literally takes me all of my day to just look after my self ... i don't ever feel up to it but i try to do a little whenever i can .... i think the best thing for me is to go it alone .... it's better than being judged by people who just don't know or understand ......... tilly

Thank you all so much for your replies ..... you have all made valid points ... i tire of explaining just how much more difficult it is for me to sustain activey ....... the complete lack of understanding leaves me stressed and this wears my already wornout body wornout even more ..... the frustration i feel at this makes me not want to bother anymore and just withdraw ..... i try to keep as active as possible around the home ... and i like to do stretching exercises low key and do them sitting or lying down ..... in truth i am not up to exercising at all because it is to difficut you have no control over the already high heart rate, out of breath even before you begin ....... take today, it's one of those days when you cant even stand up ....... tilly

Can anyone help to give me some ways in which i can express the difficulty i have with sustaing activity ....... I have tried to be a part of an cardiac exercise class and found it virtualy impossible to sustain any activity ... I am already compriomised with the heart rate and can't take a full breath in a lot of the time also needing to keep sitting and taking a rest ..... and so when i try to exercise i am in a lot of difficulty ..... I have tried to express in my words the problems i have but feel it sounds like i am finding one excuse after the other ...... even after they have read about the condition it seems there is still no understanding of how you are limmited unable to function like anormal person .... has anyone else ever found themselves in this situation .....

I did not have a choice of seeing numerous doctor where I live ..... I new and the doctors I saw new that something was going on with me ... but they where not prepared to think outside of the box ... it has been the most stressful time of my life, and it was and still is hard to broach the subject with you general practice doctors .... How did you keep going with clear demonstratable symptoms ( tachycardia ) 150bpm every time I try to do anything, knowing that having huge heart rates and fatiguing and debilitating symptoms, not able to live a normal life .... just knowing there was something drastically wrong ... something has taken your quality of life away ...... a totally life changing thing has happened to you .... you have to keep going to try and get to the bottom of what is happening to you .... it is to easy for doctors to dismiss people, ..... I have had support from my husband and sons and sisters, if it was not for them I don't know how I would get through ...... I also had help and support from the cardiac rehab nurses, they had not heard of pots or ist or dysauntomnia but they where willing to read about it ... and I thank them for that ..... and then there is the help from this site, support groups, without these then I fear things would be a lot worse .............. Tilly

Up until Feb 2007, I was a relatively normal but had always had tachycardia, but nothing like it is now . A brief outline of my story, just to tell you high lights of it .... And how the internet helped us to get a step closer ?? I had severe chest pain and after this I had an incessant tachycardia where by my heart rate would just sore up and up ... to ridiculous figures .... I was sent into hospital by my Doctor ... they thought it was a clot on my lung but the CT was clear .... they did the usual 24hour urine test and that was pretty much that .... This went on for two years and my cardiologist was seeing me every three months and saying and doing nothing .... apart from saying it is rare what is happening to you, I have only seen this a few times ....... I Googled (tachycardia) , and then ( huge exaggerated burst of tachycardia every time I move ) and then (incessant tachycardia ) ... the only three things that came up where pheocromocytoma, inappropriate sinus tachycadia and pot?s.... these where giving a definitive overview of my symptoms with the tachycardia being the dominant symptom ... I took copies of these to my doctor who sent them to the cardio who said yes it is this .... when I saw him on my next appointment we discussed it and he said that I have been a rare case and pot?s is very rare but difficult to diagnose .... but it is pot?s that I am suffering bc he has witnessed all of the symptoms of the tachy every time I move and so no .... along with the ECG monitoring. I was sent to see and EP who also said it is pot?s and ?ist? they are overlapping syndromes and how I am affected he would say it was more pot?s ...... They where open to the discussion and said well done for finding out about pot?s and ?ist? ....... I got the feeling that they thought the conditions where to rare for then to come across ...... I think I have been lucky with their attitude as they did not discount the internet ? After all it is a part of everyday usage now and they themselves look to the internet for answers ??. people are more aware and better informed than they have ever been it is the 21st century after all ?..... I don't think it a case of dx'ing oneself .... More a case of people won?t take ?I don?t know? .. for an answer anymore ?.

Can anyone tell me if they have ever been on statins and verapamil at the same time ... I have high cholesterol and the statins make my muscle problems myalgia worse ... i have also been prescribed verapamil and it says on the packet that statins and verapamil contraindicate eachother .... they can make the muscle problem worse and the statins can acelerate the verapamil ??? not sure what it all means and don't want to take them untill i have answers and feel sure ...... can any one give me any advice .... thanks

I have daily headaches .... have had for longer than i can remember ... but i have never asked my GP about them ... i remember when my first son left home .. i was grinding my teeth and the dentist issued me a gum sheild , this helped enourmously, i did not realise that the headaches where caused by the teeth grinding .... i had xrays that showed artheritis in the jaw joints too ......... but also i get them due to my neck injury ... i suffered whiplash and a herniated disc and have terrible spine pian ( spondylosis) in my neck and spine ... so i always attribute it to this ..... i use ice packs on my shoulder and heat and massage .. and try to leave painkillers off for as long as pos .... so i at least have some spells of not takeing them ...... i also get migraine on occations where it disturbes you vision ... and these headaches cause nausea ......

Has anyone had this test done during there diagnosed of pot's ? ..... i have just had this test done as my cardio say's he want's to rule this out (Addisons) . does anyone have Addisons with pot's is that possible ? .... i now have to wait for the results .........

Does any one every notice their pulse in their stomach ... what i mean is when you are lying down can you see and feel your pulse in your abdomen ...... on some occations when i have been having problems getting my tachy under control bc about once every month it will be really persistant for some reason and i have to lay down most of the day bc it will not subside ....... when i am lying on the bed i can see my abdomen going up down with the heart beats ..... is this normal with pot's .....

Hi everyone ... i get tremors and i also get these fluttering feelings in various muscles in my face or legs mainly .... but the strangest of them all is the tremors in the centre of my chest ...... they seem to come and go about every couple of months ... I told my doctor and he said it's anxiety ! huh! ... my h has felt them he put his hand on my chest and it was vibrating .... i told my cardio and he said what is you heart doing when this happens ... i said it's not going fast bc i have felt my pulse when it happens and it seems steady and regular ........ i had thought it was related to arrythmias ...... tilly

I went through a cardiac rehabilitation program .... you do eight weeks of very low key exercises in the hospital ........ and then you get sent to a gym to do another eight weeks of supervised but at a slightly higher level ........... and this was mainly for heart attack patients ... . they where running on the treadmills ... i struggled terribly with this .... i also felt terrible like they thought i was not trying but i felt so so ill throughout the sessions and i really pushed myself ...... high heart rates throughout ... mine would go up to about 144 with the stretches before we had started ... and then it could be 160 easily on the treadmill but they set everything at a snail pace for me bc i was an unusual and rare case .... ( every one else was picking up my monitor and they thought they where working to hard and they where panicking and calling the nurse ) ..... they have never had a pots or a ist patient before .... but i found it all made me feel worse and i did not benefit from it ... i was just to poorly you body is not working right ... before i was ill i used to go to the gym and i new what heart rates you had to acheive for you age and exerscise levels .... i also loved swimming .... i used to have to work hard to acheive 130 bpm before i was ill and i was not deconditioned bc i was a very active person .... and only four years before i was ill i had a heart monitor bc i used to go speed walking with my friend and you had to keep it at 120 in the fat burning mode this was hard to do ..... and now its hard to keep the heart rate down .... (life changing life altering, it is definatley that ) .... i do worry about the cardiac conditioning bc even if i can do a little and ignore the h/r but it is to hard to sustain the activity .... i am intending on trying again when i feel up to it ..... Which bit of us is broken the heart or the bp ?.......

well i was so cofused by this bc i have thyroid problems and have gone through the menopause ..... i have three sisters all older than myself .... i constantly ask them do you get this and that !!!!! ... and they never have anything to the extent that i have ... and they never have any abnormal blood for tyroid or anything .... i think i can differentiate between the menopause bc it's been so long i went through this at 45.... now 52 ..... they never had tachy ... and they are able to rush round do normal things drive work socialise and so on ..... when i go into a shop with in two miniutes i could just drop with the heat .. face red like i am about to explode .... sweating profusley i just can not stand it ... many occation i have felt i just got to get out of here walk away and leave my shopping .... bc if i can not get cool it will trigger an svt type of attach ...... but the night time is when they are cold horrible soaking drenched where does it all come from .... i asked my doctor is all of this related to the menopuse my tachycardia and all of my symptoms .... she says no my tachy is unusual ...... tilly

I keep getting these flushes of sweating ... i get really hot and have to get some air or a fan to cool down ... and then i can need to put a cardigan on or something bc i have gone cold and then it starts again when this happens it makes my tachy worse ..... I also get intermittent cold sweats that wake me durng the night ... soaking wet my hair the sheets the bed is cold and damp ... is this a symptom of pots .... does anyone else get this ?

I am to have a test call the short synachthen test is this the same thing ? .... i have been so scared in case it makes my tachy worse ... my cardio says he wanted to rule out addisons disease .... what is the difference with the ACTH and the chewing test ? why would i be having the injection .... can you choose which one you have ... does it give the same results ??? ... tilly

My h/r is all over the place it changes every time i move big egzagerations of at leasrt 30 bpm each time ..... and when i need to wash bath or get dressed it will be 140/150plus but it will come down i have t sit for a while .... when asleep a holter monitorer recorded 60 .... but even while l lie down on the bed watching tv when i have monitored it my self it will just keep going up and down even while i am laying there still it will go 78 then climb up to 98 and then back down again ..... and when i stand up it will sore off up to 130 plus and any sight activity will increase it ......i have enormous variations but they are a constant daily event, this weirdness now as i call it, is now my norm!!! and it has been this way for two and a half years and never changed its patern i am always fatigued i have also notice that my bp is the same never any consistnacey with either of them ..... i too have hyperthyroid and i only take 25 mg daily and my doctor has never increased my dose ........ normal activity is very limmited and i too get bad reactions to bb they send my heart irregular which is very scary ...... and when i have a cold or the flu or other illness like an infection the heart rate will stay at a constant high around 130 for the duration ot the illness ..... i try to live my life now within the new bounderies .... tilly

I too suffered a neck and spine trauma over 20 years ago .... i damaged my brachial plexus which is the trunk of nerves that carry your sympathetic and parasympathetic nerves ( if i remember rightly ) ...... and i have wondered if there is any connection ... although i have never had a doctor to talk to about this ..... I have been tachy for a long time but only became ill two years ago to a more severe degree .... i have spondylosis in the whole of my spine and this causes significant pain and headaches and other symptoms and so i would not no if the neck injury was the cause of my "ist/pot" ...... but interesting that the nerves in this area are to do with the sympatetic nervous sysem .....