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tilly

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Everything posted by tilly

  1. Thanks for the replies ... my asthma nurse thought maybe the breathlessness could be related to my heart problems .. I was offered an angiograme but felt to scared to go through with it ... Re the inhalers I will mention to the asthma nurse what you've said and ask about the nebulizer, she also thought a reliever may do the trick and help stop me from getting it again next winter .... thanks ...tilly
  2. I was worried that my high BP's were due to the phyo .. and still have it back of my mind simply because I have the kidney issues now that are still unresolved, although I feel a little more confident that it is probably kidney stones as I have the feeling I have passed three .. I have stopped drinking bottled water and now drink tap water with a little juice in it ... hoping this will help, back to the BP issue ... my sister has constant high BP and she has been on bb's for years, but was on them for blood pressure not tachycardia as she has a normal heart rhythm, she is also on the higher dosage ... I am the youngest of four, sisters and I was the first to go through the menopause and they wonder why theirs was late, i had loads of blood tested to check for the meopause and results where through the roof somthing called the FSH ... also found out same time i had low thyroid this was the begining of the jumbled up chaotic state of my body .. and then i get POTS three years ago ... my BP at the moment is 130/86 pulse 110 sitting here ... but I find it fluctuates all of the time .. when I get taken to hospital with an SVT the bp is very high .. when they put you on the monitors and do your BP every five minutes ... ( does anyone know why they do it every five minutes ? ) my BP will be very high for a long time 199/110 it will fluctuate in the high region for quite some time, a bit like it's having a little crisis ! .. When I was on the ward my BP was 95/58 lying down and they recorded it on the record sheets and put in brackets lying down. ! I am convinced that the hormones are playing apart in this .. although not the tachycardia, as I asked my doctors on numerous occasions could the menopause be causing all of the tachy and they say no it is an unusual case ? .. Hope your better soon Flop ... Tilly
  3. Does anyone need to take the inhalers ventolin for their Asthma ? ? or is their an alternative because of the tachycardia contraindications ..... I have asthma and have had a flare up following a bout of flu and the cold weather is aggravating the situation ?.. I cant go out because of my asthma and I have been prescribed ventolin again and fear taking it because of my server tachycardia .... any help appreciated .... tilly
  4. I would like to add that i have erratic BP episodes, of it being low 98/60... but very highs normally high when i have SVT or a prolonged tachy if i try to sustain any activity ... i go bright red flushing and can get nauseous when it is high, but dizzyness when it is low .. i am not clued up medically on how you BP works .. but i wonder Flop, have you thought it could be naturally changing because of the menopause ? .. not suggesting that your going through it at all ... but i started it early and it ended when i was 43 .. and still have symptoms even though i have not had any periods for eight years .. the menopause alone can muddle up your body .. my high bp's have ranged between are 178/110.. a little higher on occations .. 198/120 ... i had a 24hour BP monitoring and it showed i had high bp lot of the time ... and some lows but my doctor said i did not need treating as it was not constanly high ! .. tilly
  5. I have read the spoon theory, it is a poignant little story, about chronic debilitating illness and how you have to cope every single day and try to think about tomorrow, not to waste any of your spoons .... it helped my through, I relate to it all of the time, tilly
  6. Kelli .. i don't know how you manage to work, it must be so hard for you ... I cant seem to sustain activity .. like I said heart rate through the roof before I do anything and I can?t seem to take a full breath in and struggle every day with trying to keep the rate down physically by sitting an laying down .. when i try to ignore it and carry on i get chest pains and them one thing leads to another and before you know it you got go to the hospital ... so it always is a balancing act trying to manage it all of the time ... I have had no relief from symptoms for three years now since it began .... before this I was a relitivley normal person ... Who had to work hard at the gym to get your heart rate up to 120 aerobic mode fat butning mode .. and was no stranger to exercise and going for long walks ... so having to put up with this has bee very frustrating .. I have had four acute coronary syndromes, been treated for the chest pains .. and wonder if I have some cardiomyopothy now ... I am going to ask for a new echocardiogram when I go for my appointment next month ... Angela .. I think the bb you mention is it the same as bisopropolol . in the uk ? .. I have tried three different ones and they did nothing . but the bisopropolol sent my heart irregular every other beat keep missing it was very scary for me fast and irregular... but I have not heard anyone else complain of this !.. it must be me that is sensitive to the meds ... Griffin... I intend on mentioning the iverbradine . unless they mention it first .. I'll have to see at my appointment .... what I find the most distressing is the constant inability to sustain any activity, how any activity floors you ... my heart seems to think we are in marathon mode, it balmy, surreal, odd, the number of analogies i can come up with are endless ... what I have been trying to do over the past few months is, build a life with how I am now instead of keep banging my head against the wall ... I have given in to using wheelchairs now, i use them in the shops and I am looking into the options of a power chair in the home to help me over the bad morning .... thanks for all replying i know you are all suffering too .... tilly
  7. Thanks so much everyone for replying to me ... i can not tolerate some days, it the same every single day every time i move ... i get no breaks from it and so reading some of your replys like Emmas ."its a real nuisance cant do anything", no house work .. it is a real nuisance indeed ..... i don't drive anymore because i fear if anything makes me anxious the tachy will be worse 200 plus and i will be on my way to the hospital again ... so i avoid everything that can cause me any anxiety ... i also worry what and how i will cope with an emotional upset say a bereavment, how will the tachy be then ? do any of you have experienc of this .... i get high BP aswell as LOWs with the tachy it fluctuastes and is as erratic as the tachy ... what do you all think is the worse symptom to put up with ?... mine is definitley the tachycatrdia because it is so disabling ... persephone, thanks for saying about the iverbradine i think this may be a discussion at my next appointment ... let you know what they say .... tilly
  8. I know that the tachycardia is the main symptom of pots, but I wonder just how you cope with it all of the time .. I tire of it daily .. meds did not work on it and so I have to keep stopping what I am doing and lay down to get the tachy to stop ... even when I sit to get washed and dressed the tahcy is still there 150 washing and cleaning my teeth ? 140 putting on my bra, and so on , I get breathless if I don't stop .. it appears that upper body movement also causes tachy! any movement infact !.. I can't sustain it all day and have to keep sitting - lying down, which I have become accustomed to after having it for nearly three years now, day in day out, never had one single day free of it .... how many of you have to use a wheelchair indoors .?. Does it help ? ? I have to use one to go around a shop .. I have already posted a lot about this on ( Stacie?s wheelchair thread ) ..... but in the morning I am floored by the incessant tachy, constantly every morning, when I wake I think here goes as soon as my feet touch the carpet .... I know what I am saying is all POTS .. but I still wonder do you all feel the same ? do you use wheelchairs indoors ? Most importantly does it help ? do you all get the tachy even though you are sitting to wash and dress ? .. I am having one of those days when I feel im the only one ....
  9. whoops sorry!!!!! (i do not know how i got this post on twice, but i don't know how to delete the secomd entry) I know that the tachycardia is the main symptom of pots, but I wonder just how you cope with it all of the time .. I tire of it daily .. meds did not work on it and so I have to keep stopping what I am doing and lay down to get the tachy to stop ... even when I sit to get washed and dressed the tahcy is still there 150 washing and cleaning my teeth ? 140 putting on my bra, and so on , I get breathless if I don't stop .. it appears that upper body movement also causes tachy! any movement infact !.. I can't sustain it all day and have to keep sitting - lying down, which I have become accustomed to after having it for nearly three years now, day in day out, never had one single day free of it .... how many of you have to use a wheelchair indoors .?. Does it help ? ? I have to use one to go around a shop .. I have already posted a lot about this on ( Stacie?s wheelchair thread ) ..... but in the morning I am floored by the incessant tachy, constantly every morning, when I wake I think here goes as soon as my feet touch the carpet .... I know what I am saying is all POTS .. but I still wonder do you all feel the same ? do you use wheelchairs indoors ? Most importantly does it help ? do you all get the tachy even though you are sitting to wash and dress ? .. I am having one of those days when I feel im the only one ....
  10. Hi again .. Second post today ? I am having one problem after the other ... I always wonder if the 24 hr urine test was enough to completely let me off the hook for the pheo ! .... since having pots and ist .. I do have all of the main problems .. Tachy gastro heartburn stomach symptoms and everything else the list is endless ... but I developed the flank pain and if I get any anxiety my heart rate will zoom to 170/90 in a nanno second .... they say renal colic and It could well be ... but then this is another health problem I have to add to the rest ... The tachy started first and then this flank pain a year later ? I tried telling my doctor of my fears but they say the urine test was negative ?. What I am asking is do any of you still worry it could be the pheo ... tilly
  11. Hi all .. i wonder if anyone else experiences this ... i seem to have become intolerant to beans .. laughable really .. also to wheat products porridge weetabix ... all of them are leaving my stomach feeling heavy a though i am overloaded, unpleasant and this intern agravates my heartburn .... three time now i have had servere stomach cramps when i have eaten beans ... later on after they have been in the system for a while ... i get cramps followed by severe diaorea .. (sorry)not nice i know ... but the strange thing is my heart rate dipps right down to 59 /69 .. and it is never this low, I always have fast heart rate all of the time ... I just wondered why it reacts like this to the stomach aches ... and why i have become intolerante to some foods ..... any ideas .... tilly
  12. I have gone through he menopause and can still relate that my SVT will strike once a month and could even be triggered by hormones .. but it does just come out of the blue like flicking a switch and whoosh off it goes ... you can feel it banging in your chest, after all who wouldn't if it's going that fast .... I have had them when I have been in the hospital lying in my bed ... one minute I?m ok and then whoosh off it goes the nursed have witnessed it ... you have no control of when it will happen ... Sometimes they are over in an instant and others they are sustained for hours .. I have both .. but what I find strange is that I have severe tachy every single day heart rate up/down between 110 150 .. just for normal minimal activity around the home .(pots) ... take today for instance it has been tiresome it just want to stay high.. I am thinking hormones are playing a part in the POT?s , or it is a case of, it's that time of the month even though I will not have a period, and the hormone imbalance is messing with my POTS ..?... Also what happens when I have a SVT attack is I will go for the most massive wee ?. So the tachy must affect your kidneys ?.
  13. Hi ?. I have SVT and have been hospitalised on numerous occasions with it... what I found is that they just come out of the blue .. my h/r with the pots as we all know zooms up every time we move and it is also in the svt levels of 140 plus .... but a SVT attacks come on spontaneously even if sitting down or even lying down ? I get a sense that something is about to happen, like a feeling of, not doom exactly but a feeling of some trepidation, after this feeling, whoosh off it goes galloping for all its worth straight up to 190 and more on occations .. not nice, i find they really shake you up literally .... I have learnt some measures to deal with it ... blowing into a syringe that the paramedics taught me .. and glugging down ice water ... and obviously lay down or sit given the situation your in when it happens ... I have one once a month now and have been treated for so many in the past ... but try my best to deal with it myself .. but I am told if it does not settle in 20 minutes get to the hospital ... and I do, I would not ever ignore it ..... I have a heat intolerance and this triggers them too ? they are scary and I do sympathise with you I never get used to them ? tilly
  14. I have always found the novelty of the short stories to be light hearted fun, they are off topic and are something we could all add a little to each day .... we could get one started and see how it goes .... i do not know if the DS affects your eyes ... i enjoy using mine although i am not on it for very long periods of time as i get tired and need to pace myself with everything i do ....
  15. I am fed up of pain I can not sit for long at my desk, I am constantly having to change my position and move stand and then sit back down .. I do not know an awful lot about EDS .. I intend on asking to see a rheumatologist .. I have arthritis in my whole spine knees and fingers also I have fibromyalgia and this weather does not help it makes things feel worse ... I had attributed my neck and shoulder pain to my spine problems ... but it is hard when you can not sit comfortably, I get so frustrated when I can not sit long enough to finish anything ... so I do sympathise with you .. I went to a pain clinic they teach you to pace yourself .. have you ever been to one ... ok in theory but the reality is still hard when you want to carry on with a project ... your college photo is lovely ...
  16. Hi ? it is hard to keep occupied when you spend so much time indoors ... I am so glad i bought the Nintendo DS last year it kept me busy whilst i was stuck in bed with the flu and has continued to entertain me since ..... I have scrabble and I have completed the brain training one and two these were not fun like the others ... professor Layton?s curious village and the Pandora?s box both where really good ..... my latest is Sherlock Holms the mystery of the mummy .. just started it, it seem to be going well ... the time flies by when your absorbed in it .... The DS is good because you can play it lying down as I get tired sitting at my computer ... Also a good idea and an amusing one is ?.. start a story for fun on the chit chat - social pages for everyone to join in this way you get to write off topic and it can be amusing to see what someone else has added ... it can go on an on ..... Start something like a .. Ten word story or maybe a one sentence story, so that no one can write to much and see where it goes ? its fun ....
  17. Hi Kali ... I am like this .. my heart rate and BP is all over the place ... I watch it going up and down even whilst I am laying on the bed watching TV, like there is no reason or rhyme why it is acting like this .. although there must .... I use a monitor most of the time it helps me to work with in the parameters that I set for myself, I set mine at 70 low and 140 high this alerts me to rest and let it subside for a while .. although it is going off all of the time at 140 .. I used to have it set higher at 150 but I thought this was unrealistic for myself as I do not think I should let it get that high ? I did not find any help from the meds so I use this a coping strategy ?. I would be interested to hear what Dr Grubb has to say about the erratic ness ?..
  18. Does anyone know what are the ranges for blood pressures .... what is considered high and what low .... I have fluctuations ranging from high 195/110 .. and the lowest has been 98/55.... is that to low .... what is considered to be to high and to low ..... I have noticed just lately I am having a lot of lows ... but it may be normal ... just wondering .. also I have been having dizzyspells.....does high and low BP cause dizziness ?
  19. I too get this .. I always thought it was to do with asthma ... I have asthma and I get wheezing bronchitis especially this time of year ... I find it hard to hold a conversation and talk on the phone ... I used to be a real chatterbox ... and have often wonder over the past few years why this is happening but it is not something I have asked the doctor about ... but I do find it debilitating at times .... short of breath and light-headedness ..... I tend to keep quite and try to say little when I feel like this .....
  20. Here - Here everyone ?... let's hear it for people who need to use wheelchairs ... One thought that I had in dealing with people who are rude enough to blatantly blurt out ? " what?s wrong with you " ? is this .? We could wear our DYSAUNTONOMIA sweat shirts and carry a big pointer and just point to the shirt and reply, .... ?well if you have a few hours to spare let me fill you in? !!!!!.. ha ha ... my husband thought this was funny ... they would run a mile .... can you imagine them yawning ! .. and trying to get away from you ... Then say, " oh don?t go there?s more? well you did ask ! !!!! ?
  21. Hi Tammy ... I was house bound for the first two years of getting POTS . I was in and out of the hospital ... terrible tachycardia it was relentless .. I could not walk anywhere not even stand or get up for the tachy ? I still have it but have had to learn to live with it ?.. it was a massive shock to my system one minute normal and rushing around everywhere and then Bam! ... Something?s gone wrong with me I do not work properly anymore .... the frustrations where immense .... but nearly three years have passed and I still feel it is surreal what has happened to me ... I was introduced to the mobility scooter first, through a neighbour, it was so hard to accept that this is going to be the way to extend my boundaries, I was so self conscious ... my husband was quite enthusiastic about it and he said he would have a go it looks fun !! ... but I wanted to say to you Tammy, please don't give up on ever using one or a wheelchair because you have to live your life as best you can under the circumstances .... very hard I know, but once I got out it was a breath of fresh air .. I am learning to ignore anyone who looks at me now ... maybe they wonder what is wrong ! or they are sympathetic !... I do not know .. ? I have never had any one be rude to me .. I think in my case it is my own self consciousness I have to get over ..?. We are looking into the possibility now of getting a wheelchair, as I do not want to keep struggling every time I want to go to the shops ...
  22. Hi Persephone ... have you look into the possibility of it being food related ? .. I find that certain foods like eggs and cheese / chocolate will trigger a migraine headache I can guarantee getting one if I eat any of these thing more so the eggs and cheese ... odd because I do like these foods but I tend to leave them alone because of this ... just a theory .. Treatments ? have you tried massage and warmth .. I know this sounds abit twee but I get pain in the right hand side of my spine due to an injury long time ago and it is persistent inflammation in this area ..... what I have to do is gentle stretches and I get my h to massage in-between my shoulder blades ... this does help to relieve some of the tension and helps me through the migraine ... I get migraine headaches I get at least four times a month to varying degrees and the worst being the visual disturbance and nausea and then the long lasting heavy neck and head which will last for weeks ... like you described ..... this makes my spine and neck worse hence the massage ... it may be worth tying if you have not already done so ..... but the laying down in a darkened room and quite is a must ... I get little relief from meds ...... I hope you get over it soon ....
  23. Stacie and Persephone ... this is a really good thread to keep going because it is highlighting how we have difficulty in sustaning our activity .... To give an example of my shopping trip to the sales yesterday ... Well! when I say shopping trip it was to one shop only, it was our local clothing outlet .. I always think I can manage but the reality is always different ? I was with my husband and he waited in the car for me ... I picked up a trolley at the door and walked what could only have been 20 yards or so ... the tachy was already present ... in my excitement of spending money in the sale I was looking left then right, Iv?e not actually put anything in the trolley yet but already needing to sit down so I am now not thinking of my shopping.. I am thinking how I am going to cope with the worsening situation ?.. the tachy is taking over yet again, I am also getting hotter and need to take my jacket off i am sweating .... I am now looking for somewhere to sit ... no seats to be seen anywhere only in the fitting room but this is approximately 100 yards away and I am having difficulty now wondering if I should make a sharp exit or struggle on ... I know I can not struggle on and ignore the tachy as it will lead to me passing out or going home in a ambulance ... I am now stuck with a dilemma .. also not wanting to bring attention to myself .... ( I am sure you have all experience of this ) .... now to get out of this dilemma I am in inside of the store ... I had to ring my husband on the mobile, who came to my rescue with a wheelchair ?... I abandoned my shopping treat in a ball of frustration .. headed home ward with no goodies and spent the rest of the day having to rest .... Feeling let down again by my health ?. Now if people want to give us funny looks and make comments ? then they are very welcome to come and spend the day in my body ?.. this would make them think twice ?.. two years ago I would have been around the town, the city, in and out of every shop " shop till you drop" ... and still be up for a night out ....... but my world has shrunk down to one task per day and one shop if I am lucky .?.. Now if that?s not life changing I do not know what is !!!..
  24. It is a sad state of affairs when some people do not understand about disability .. .. i had a rough time when i was first introduced to a mobility scooter, i felt so concious that people where looking at me and judging me ... i had not been anywhere for two years, i was house bound and did not know how i was going to get about anymore, because of the severe tachycardia, it was life changing, i can only manage to visit one shop if i am lucky and now i too have to use a wheelchair in the shop, i did have empathy with people in wheelchairs before all of this happened to me ...... but never ever thought that i would one day find myself using one, or that i would be so compromised by the server tachycatrdia, and indescribable fatigue and tiredness and how it affects you, making it virtually impossible to sustain any activity ... but i have swollowed my pride and know i have to use them and i am glad that some stores supply them ... my world has shrunk massivly since having pots and ist ....
  25. Thanks for all of the tips and input, they are very much appreciated ... To quote a few words from flops posting .... ( "I have so many problems " " body is in chaos" ) ...... I can relate to that . I do not know where to let them start, I feel like a wreck .. my arthritis plays up so much especially now it is damp and cold here ... the spinal instability causes me a lot of problems it is very much a balancing act to get through the day with one thing and then another, quite a struggle ....... I have become more disabled since the Pot's took hold of my life ... I feel as though every thing has been accelerated .... I do not expect a result from acupuncture for the pots .. but hope I get some pain relief in my spine .... I will let you know how it goes ......
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