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Everything posted by tilly

  1. After nearly four years of struggling with getting a diagnoses,trying different treatments some of which made me worse, i feel i turned a corner about a year ago, and let go of the frustrations that came with a life altering condition as pots and IST, acceptance was when i began to live my life again, not the same life but different, i started to feel all was not lose, tilly

  2. I think the key word is use them "selectively" they can give some independance back, I am currently doing an article on wheelchairs and the perseptions of disability .... I fought against it for a very long time, but then looking at the bigger picture i was never able to go out anywhere, ( missing out on so much )there was a lot of selfconsiousness to overcome, after being a very mobile and independant working person, sadly some people have to use them 24/7, so looking at their plight mine is not so bad !!!. .
  3. Wheelchairs are there to help you, use them selectivly, even use the ones in stores to help you sustain the activiy of shopping, I struggled with the idea of using a chair but at the same time i was not going anywhere or able to stay in a shop because of the need to sit down, I gradually got used to the idea, i dont use it constantly just to help in certain situations ... like covering distance and such .. you can even get up and walk a litle, just plan how it would benefit you, will it add some quality to your life !!.... if it make life easier for you then go for it ... tilly
  4. Hi ida, you mention being (tachycardic on waking ) !.. have you heard of IST inapporiate sinus tachycardia , i have this aswell as pots it may be worth reading about and seeing how it compares to your symptoms there is a website for ..IST - www.tachy.co.uk ......... or if you google "inappropriate sinus tachycardia" there are entries to read about it, IST is rare .... tilly
  5. Hi it was a long time ago but there was a really good thread ongoin for wheelchairs , i think it was last year if you could find it , full of lots of interesting thougts on this subject, What i would say is , if you think one would help you and you need to use it from time to time then why not!.. i don't know about getting it prescribed though, I bouhgt one and on occations it is invaluable to me, but i am restricted anyway with me mobility .... I hope you can find the old thread , i'v had a look for it but did not find it i think it was started by Staci? not exactly sure about that , tilly.
  6. Hi Mighty mouse .. yes i suppose this was partly my question (does dinet have someone to lobby support campaigne for them )!!!.. i was intested to see if it was possible to get dinets profile raied, by way of any awards Michelle could be nominated for, for her work to society, raising awarness and supporting others with rare diseases!!... (maybe somthing Like this) .. this would inturn raise public profile ... (from a campaigninng strategy point of veiw ) .. marketing dinet in a way !!, I know exactly what you say that(it all costs) and i understand and appreciate this ... I can see the vast amount of effort that has been applied to this mammoth task of building up all of this valuable information and i know that most including other charities would go straight to dinet for furhter informaiton and for this reason i think it only just and fair that some sort of public recognition is deserved, again hence raising the profile of dinet .. I think it would be good for dinet to affiliate to our charity here becasue, goals that dinet wanted to acheive this year was to educate the genral population and develope the lists of physicains that treat pots world wide ... affiliated would (just basically make us allies) ... thanks tilly x
  7. Is dinet affiliated to any charites ? does anyone know .... this would help to futher the cause of getting pots better recognised, ... in the uk we have one particular charity that is supporting pots and i have seen information grow over the past twelve months here ... ( could dinet become an affiliate our charity in the UK ?? ) ... Here we have a cival honours award that goes to people who do good work for their society ... i wonder what would be the equivellent of an honour or an award for services to the cause in the USA ??... Maybe Michelle could be nominated for such an award if there is one, this would raise the profile of Dinet giving Michelle notoriety within the media ... I think most charities were born out of patient led groups ... ( WELL DONE MICHELLE ) without you and certain charities here we would be struggling even more than we are now .... just a few of my thoughts on this subject ... tilly x
  8. Hi i have recently heard that sertraline can be used for the treament of tachycardia has anyone else heard this, i wonder how it works to reduce the heart rate .. any information would be appreciated as i am going to ask my doctor to see if he wants me to give it a trial, i also have been having low periods, feeling emotionally fragile and thought this medication may help in both cases ... i have IST and so do suffer badley with the tahcy .... i have been having big rhythm disturbance for couple of weeks as mentioned in my last post ... tilly
  9. I still have the ectopics nothing has changed i am trying to ignore them but i have so many ... what is the difference between ectopic beats pauses and missed beats does anyone know ? as they seem to feel the same in your chest ? when i feel my pulse i can feel the missed beat so is that ectopic beat ? i find it confusing ... i am thinking i should go to get it checked out further ... tilly
  10. Thanks you all so much for you help, it's times like these when support from the forum is invaluable, .... .... i still have then now they have not gone away, does anyone know if there is a difference between the pauses and the ectopics... becasue a lot of them feel like pauses, little hickups in the rhythm ..... it is thumping in my chest(palpitaions) and then it's broken up by a pause every minuite, somtime two three a minuite and them every couple of minuites ... some feel like they are lower below the breast bone and other have been higher just to the let of centre .... and does the lenghth of time it's been going on mean anything ? eight days now !!... Flop i will try to keep mobile and take my mind off it and hope they go away .. i am just worried becasue they go on an on, they have been relentless for so long !!!!.. how would i know if it was due to electolytes ?.. do i need a blood test ? or is there something i can try myself... any advice very welcome right now .... thanks so much tilly x
  11. To follow on from my earlier post this mornign, I have had an ecg done at the doctors surgery and as you would guess for the 30 seconds of the ecg i did not have an ectopic if ectopic are what they are ... so no real answers there !!!.. i am still very symptomatic with them coming every minuite or so ... any advise would be great anyone ???
  12. I have been having multiple ectopic for seven days now, they have become very frequent i measured 33 in three hour period they seem to be persisting, even getting them during the night, some are quite hard thuds and take your breath away , some seem to be joined together like doubles, some dizzyness ..... i have had ectopics before but randomly never lik this ... i have been to the doctor today they are going to do an ECG, later this afternoon .. has anyone else experienced having so many ectopics over this time period , i do not know if they will stop of there own accord, they seemed to be triggered by an emotional upset last week, we had a berevment ... please let me know if any of you have experienced this ... i have IST - pots, thank you tilly x
  13. Everything, it has robbed me of the life i expected to have, a normal life where you are not controlled by this illness or compromised by your every move ... i miss the freedom to do what i wanted when i wanted, no social life, i miss dancing enjoying myself letting my hair down , having a drink of alcholol now and then, cant plan anything, allways letting peolpe down becasue your to fatigued to take part in any thing ... being made old before my time ... soooo much has been lost and replaced with struggles ..
  14. RE the two types of (pots and potts) ... Hi flop, how would something like this type of "potts" be diagnoesed if you have a spinal injury, i find it interesting what you are saying, as i have heard before that spinal injuries in the thoracic spine where the autonomic and sympathetic nerve are carried can cause postural orthostatic pots like symptoms , tachycardia ,fatigue, dizzyness, all the symptoms of pots... do you know how this would be diagnosed and how the doctors differentiate the two .... ?
  15. Hi Giffin .. i have just watched an interesting podcast with a Dr Gary Murrey ... google and listen to him he does make sence .. google "Dr Gary Murry ansa testing" .... i used to think i was being neglected by my doctors and hospital, but with all the facts and information i have gathered along my trail to get a diagnoses, and the information provided from fellow members .. i think my care teams have been very good and open minded when dealing with me ... they have been willing to learn about autonomic problems, but sadly, i was shocked to discover they do not know everything, i asumed i would be cured when i fell ill, there is definitly not enough knowledge or support out there in the medical circles ... i think there may be more understanding one day ....
  16. I seemed to have a lot of facial tremors /spams when i started with the menopause, my eye would twitch and then the twitching would go in to my lip and continue for quite some time, it felt like it was going into spasm and i got it every month, this also started at the time i was diagnosed wihh thyroid problems ... i have muscle spasms in my back and legs, i had more tremors when i was on bisppropolol, i had them in my chest then, i think the medication caused a lot of mine ....
  17. I find i can not hold conversation for long because of severe breathlessness and light headedness, when i try to read outloud, say, a page of text, or reading a letter outloud, i struggle when i am a few lines down, i begin to feel all of the symptoms of struggling for breath, and then get lightheaded if i try to strggle on ... i wonder if it is oxygen related or muscular,, what muscles do we use when talking reading outloud ?
  18. Hi Thankful .. i have ordered the serola belt that was talked about in your last posting about si instability , i should get it this week , i have constant si and facet pain .. pain inflamation all of thetime and it seems to be apart of me and i have to keep rising above it and plod on regardless, sit for a moment stand for amoment movearound , its getting the balance right, so you can keep a little active ... this is called pacing and they teach this to you at the pain clinics ... i have had arthritis since i was a teenager and it is hard to cope with so i undrerstand your frustrations ... as you say the med do not continually work and i found that what medications i have had just upset my system and make me feel awful and do nothing for the inflammations ... i keep my fingers crossed and hope it all improves for you soon ....
  19. interesting i think i have had symptoms most of my life looking back .. always been a struggle but coped pretty well, all of my symptoms were i thought normal, growing pains and all that, the only unusual thing that happened to me was everything used to go black when i stood up everytime, and i would hold on to somethign untill it righted itself, but i had this only in my very early teens, always felt rough, no vitality .. but the past three years symptoms have been very bad, constant tachy and nausea and all of the other stuff ... i was diagnosed last year after having severe symptoms for three.... i recently read a thread somewhere on this forum about Ansa test !.. i just google it and first the thing to come up was a DR Garry Murry talking about ans ... best to google it and hear what he says for yourself, (sorry i did not know how to paste the link) ... it seemed to tie in with having symptoms life long, an acumulation of symptoms ...
  20. I have had a bad flare up and i could not think what caused it, only that i lay on my stomach and i know this makes things worse, i don't know why that is ..... but i havn't been sleeping due to painfull left hip and i can't lay on my right side either because i have a hiatious hernia and this causes a lot of pain, i can not get comfortable at all, very frustrating and tireing .. but my SI is really bad and i am having to try and keep some mobility by using my crutches again, it feels like broken glass when i sit, all around the pelvic areas ... i get so fed up of one thing after the other ... seems we are not meant to have any peace ..
  21. Hi Griffin ... i know how hard it is to try and tell people how fatigue affects you .. i do not think i would have understood it either before i became ill with ist/pots, ... but now ! .. i have days when i can hardly leave the bed and i just do not know whats going on with me, so so tired heavy really fatigued, a type of fatigue you can not describe and it is not helped by lying down either .... i thank god i have a suportive family ... did you see the POTS DVD ? it is very informed and really usful to show to you doctors, it may help them to understand whats going on .... i have a cardiologist who is well informed about these conditions, but i live opposite end of the country to you .. POTS is not his area of expertese and so i intend on going to see Professor Mathias when i can, he is in london .. is he near to you ? .... just an idea can you get a occupational therapist to help in anyway, maybe they could explain how the CFS affects you, get them to read a little about POTS .... i hope you start feeling better soon and the fatigue will ease up for you ....
  22. Hi Griffin ...which part of the UK are you, who diagnosed your IST ? .. this is rare and patients with IST struggle to get diagnosed .. there are quite a few members on here from the UK maybe, some one can recommend a cariologist to you ... have you been on any other meds for the tachy .. i am statrting my ivrbradine this week ... and would be interested to hear from anyone who knows why you will be hospitalised while taking iverbradine ??? is it because you have other conditions ?
  23. Hi Griffin .. i wonder why you have got to go intohospital to start the iverbradine ? i am to start this but i do not have to go to hospital, i am in the UK also ... i too have inappropriate sinus tachycardia and pots ... i know what you mean about execise making things worse, i went on a cardiac rheab programe and i struggled a lot with minimal exercises .. and if i tried to push myself it set me back big time .. i would suffer for a couple of weeks because of it ... i can also relate to people not being sympathtic to fatigue problems ... they don't even thry to undersand ...
  24. I find my palpitaions can be worse after certain foods, pastries or cakes, although i do not eat a great deal of this type of food .. also not to overload your stomach, eat less amounts, little and often, obviously there may be a medical reason for it, and would like to hear what your cardiologist says about it .... but i also find some times eating and palpitatinos are worse than other which caused confustion, even though i have eaten same before without problems .. i think it is just the dysauntonomia paying game ... i get dreadfull heartburn also whether i eat or not, but isn't it quite normal for people to have araised heart rate/palpitations if they have just eaten a hearty meal ?....
  25. Hi flop ... so sorry your having a hard time .. it is frustrating enough with the symptoms of daily pots without having injuries to contend with as well ... best wishes for a fast recovery ... the stocking aid sounds good i will look into that, i have big problems with stocking, i had given up wearing them ..... tilly
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