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fiona-jane's Achievements


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  1. i get bradycardia and tachycardia too . my usual heart rate at rest is around 100 or 110bpm and while on my feet it goes to 140bm and above (goes to 190-200bpm when i exercise). but my resting heartrate likes to drop into the 40's but as soon as i stand up it pops up to my usual 140bpm. i get really sleepy when my rate is low, so i keep a close watch of my heart when i'm tired, just to make sure it doesnt go low enough that i'm in any danger fi
  2. my resting heart rate is usually beween 100 and 110 ish but it does sometimes drop into the 40's, often after a severe bout of tachycardia (over 160bpm). we assume that my body tries to lower it and gets it a bit wrong fi
  3. hiya, i dont get any swelling, even when i break bones, but that may be due to my EDS . fi
  4. hiya- Which diagnosis came first for you, EDS or POTS? my EDS diagnosis came 1st in 2008 and my PoTS was diagnosed last year. What were your EDS symptoms? Frequent joint dislocations and subluxations, hypermobility, dental crowding and non responsiveness to local anaesthetics, frequent muscle, ligament and tendon injuries, easy bruising, piezogenic papules on feet and wrists, thin and translucent skin thats stretchy, velvety and doughy, blue scera, wide scars, chronic pain and fatigue, load of GI symptoms incl gastroparesis, reflux, and gi spasms. there are probably more as my report was huge but i cant remember them all now... and its past my bedtime so i'm tired! Who diagnosed you? my EDS was diagnosed by Professor Grahame at University College London Hospital and my PoTS was diagnosed by Professor Mathias at the National Hospital for Neurology and Neurosurgery, both in London uk. Is there any particular treatment? my tummy problems can be eased with medications and diet alteration but the only other treatments for my EDS are painkillers and physio. my PoTS cant be treated by any meds as my blood pressure and heart rate levels are too variable, so i have to manage it with salt and fluid loading hope this helps
  5. yep, for me the sight of food (in particular greasy or fatty foods in my case, probably as these are the hardest for me to digest) is far worse than the smell. was watching tv today and an advert came on with a close up of a guy eating some chinese chow mein noodles and i had to dash to the toilet as i had no bucket handy! my nose is also more sensitive to all smells, like the smell of cut flowers or the dishes soaking in the skin (that i cant normally smell). in my flares anything solid in my mouth makes me vomit, which i often forget and then put the back of my pen in my mouth or chew on a fingernail and end up retching. which can be rather embarrassing when i do it in public! my PoTS flares usually come with my gastroparesis flares so it makes sense that my body finds foods revolting- its at this time that i really cant eat certain foods and if i eat them i ended i getting pretty sick with awful food poisoning cos its been hanging around in my stomach too long. i used to get sick with the sight of lots more foods before i stopped fighting with my tum and switched to eating a mainly liquidised diet, i used to go for days without eating anything and i found the longer i go without food the worse my sickness to the sight of food gets, i ended up not eating anything for a whole month and i had to really fight with myself to eat once the flare had eased off a little and i was then able to digest soft foods (this was pre-diagnosis when i had no meds or doctors to help), everything with a calorific value made me retch.... and to make that worse i really like the empty feeling that you get after you haven't eaten for 3 or 4 days so i now need to be super careful that i don't go for too long without ingesting something with a calorific value. at the moment i mainly eat baby foods (and foods of a similar consistency) but at least i'm taking in some nutrients and never getting that empty that i'd be tempted to not bother with my next meal or two (or more). oddly now my body doesn't seem to class baby food (in baby food jars, packets etc) as 'food' as it doesn't make me feel sick when i open the jar and see the food.... i used to think it was the consistency of the food that was doing it but i feel sick when i see liquidised soups.... its very curious! i'm very lucky to be able to digest baby foods in a flare, not all people with gastroparesis are, so i happily eat it even though its not the most palatable food source, just glad that i dont need to be tube fed at the moment. had a lot of people around me saying that i shouldnt eat it, i should eat 'adult' foods etc etc) but i'd like them to eat anything when they have a stomach virus- thats how i feel in a flare! that usually shuts them up! fi xx
  6. hiya, i've not been pregnant but i have a distinct worsening of my PoTS symptoms (and my EDS symptoms) during the parts of my menstrual cycle where my body produces the most progesterone.... although i expect this is caused by the hormone making my tissues even laxer and so my blood pools much faster and so my symptoms end up much worse fi
  7. i've just bought one from ebay.... it was an international seller so i expect they can ship them all over the world. its one made my techkewl. they're still selling it on ebay from a seller called 'chromeworkscycle' and the name of the item is ' Outdoor Phase Change Cooling Vest'. i'm not sure if we're allowed to post links to sites that sell stuff so i thought it best to mention the name etc in case the link gets removed, the link is http://www.ebay.co.uk/itm/140576931438?ssPageName=STRK:MEWNX:IT&_trksid=p3984.m1497.l2649#ht_891wt_905 i get heat stroke several times every summer (and spring/autumn if its warm) and this is the 1st year that i've seen a cooling vest that's at a reasonable price to pay, without expensive import taxes etc as its over ebay. soooo excited and want mine to arrive NOW! lol! fi
  8. i do it too, and recently been told i'm odd cos you dont need to feel my pulse in my neck to check my heart rate- it can be seen ! and i;m fairly chubby at the moment so my neck isnt exactly slender right now! lol! you can also count it by looking at either my tummy or chest while i; laying on my back, and when i meditate i tend to rock at heart beat speed. i thought it was just a habit thing i was doing until i made a conscious decision to try and be still.... and it still happened. a pal watched me and checked my heartrate with my pulse ox machine thingy and i genuinely am rocking with my heart rate, no matter how bad my arrhythmia is- i match it! and noticed today that if i unfocus my eyes i can see my beat in my vision- i get a minute darkening and a sudden brightening and its the brightening that i can clearly see, its a bit like when you see stars in your eyes, that kind of brightening. its very odd... and through all this my blood pressure is low.... which makes me wonder- what would we be like if our pressure was higher?! actually, it may be happening to over compensate for our low BP.... i've always been this way, even had as a little child so i dont think its harmful, but a definite curiosity! fi xx
  9. hiya, my oxygen levels do the same and i was rather worried about it for ages, until i got the chance to chat to my autonomic doctor about it. she said not to worry about it, unless the levels stay below 94% for more than a few mins. she said some fluctuation is completely normal but potsies often get more drops due to our blood pooling and general problems with blood pressure & tachycardia - ie the faster the heart goes, and the more blood is pooled then less oxygen gets to the lungs to be moved to our fingers. and she also said to be careful i dont hyperventilate as that tends to drop the oxygen %, and to make sure i breathe deeply and evenly (ie do belly breathing and not shoulder so the vast majority of my lungs are used. and cool fingers always read lower than they would do while warm, so if i get a very low reading i sit on my hands for a few mins and check again and its always much improved. i often notice that my stats are low if i dose off curled over or with my chin to my chest, i;m assuming cos it impedes breathing a little. i also have the tendency to hold my breath when i sleep but usually this wakes me up gasping for breath with a saturation in the 80's. luckily i only do this now and then so no action is needed at present (as i sleep walk and have night terrors so i'd be liable to destroy sleep apnea machinery). i've also noticed that when i'm tired or i sing my saturation drops a long way in its little drops, as it does when my PoTS is proper playing up (although i'm usually very tired at the same time so i may not be breathing deep enough). i also occasionally stop breathing during the day when i'm proper focussed on a task and that drops my saturation to, so i'm pretty sure much of my saturation problems are related to breathing. she also said that if it stays low i should seek medical help, but mine never stays down long enough, but basically if the drops fix themselves quite quickly then dont worry about it . taking a few deep breaths nice and slowly tends to improve oxygen saturation very quickly, and gets rid of that horrid hypoxia headache. fi
  10. hiya, i've tried tons of things over the years in regards to easing my fatigue, and the only things that work for me are drinking loads of fluids (3-4litres) and scheduling naps throughout the day. many people told me that my fatigue would ease if i stopped napping and just went to bed at a normal time and got up at a normal time.... but that just made me so exhausted that i had a massive fibro and pots flare up and ended up being so over tired that i was awake for 8days, until my body knocked me unconscious presumably to keep me from seriously harming myself. i was asleep for almost 4 days..... so now i ignore them all and nap! ideally, my body likes to have at least a 10 min nap every 2-3 hours, but i can usually push that to every 4 hours and have a 20min nap. i loose a lot of my day by doing this but the daytime i get is far more enjoyable and i get tons more done. fi xx
  11. the poll didnt ask how many hours a week that can be worked.... i can technically work, but only 3 hours a week. so me ticking the 'i can work' box may be a little misleading cos i'm incapable of working a normal full or part time working week.
  12. oral salt and fluid loading, and oral electrolyte fluid treatments are not on your list and these are the things that have helped me most. as my blood pressure and heartrate are so variable i cannot take any medications for my PoTS so i drink 3-4 liters of water (this includes my 1litre of electrolye solution) and eat tons of salt. and i am only able to exercise sat down so i exercise while in my wheelchair. i cannot tolerate exercise while i am stood and faint within a few minutes.
  13. i have this quite badly under my arms, down my back, under my breasts and between my legs. ironically my feet and hands hardly sweat at all.... usually these are the sweatiest parts of the body i treat my with a special super strong deoderant called Perspirex thats basically aluminium in a solution thats applied before bed and washed off in the morning. it itches like mad and can leave me with a rash if i use it too often without a break so i try and only use it when i absolutely need it. i've heard that some people get botox injections to stop them sweating if its particularly bad, although i dont think mines bad enough at the moment to be treated like that, but it may help others with this condition as some people sweat massively and none stop fi
  14. i was told that it's called 'air hunger' - i get this when my lungs are clear and my asthma is not playing up so theres so i'm not technically short of breath, my body just thinks i am cos of the reduced oxygen levels in the brain that happens when blood pools. so your body makes you feel short of breath to try and get more oxygen to the brain but it's futile cos theres just not enough blood running around the system to deliver any more so the feeling of being short of breath can often last a long time (in me during my bad pots days this can last for days). as long as theres no other reason why you're short of breath (eg asthma, chest infection etc) then i wouldnt worry about it. i have a little pulse ox machine that i use to check my heartrate but i find it reassuring to check my oxygen levels when i get very breathless as my levels are never as low as i think they are... like today, i felt really breathless this afternoon but i saw that i was at 95% oxygenated (100% is perfect) and so although thats a little low its still well within safe levels. maybe getting one of these would help you too? you can buy them quite cheaply on ebay fi xx
  15. for me it depends on how long i sit for and how still i sit, and how bad my PoTS symptoms are in general. on my bad PoTSy days i have symptoms while i'm laying down and often faint when sat unless i salt and water load before i fully sit up. on my good days i can sit for as long as i like without symptoms as long as i sit with my legs out in front of me, so i usually sit on the floor, and i need to wiggle my legs and generally fidget almost constantly. i've fainted sat down a fair few times, but usually cos i've not paid enough attention to my symptoms cos i usually get a warning a few minutes before i faint. i got proper told off by my autonomic doctor about that so i've been far more attentive lately and not fainted sat down in the last few months. fi xx
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