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fiona-jane

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About fiona-jane

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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 hug
  5. 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
  6. 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
  7. 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 h
  8. 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 t
  9. 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...
  10. 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.
  11. 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.
  12. 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
  13. 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 wh
  14. 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
  15. j have both syncope and presyncope episodes and always think the presyncope ones are worse cos they seem to last much longer.... my presyncope symptoms are- i get super dizzy and usually this is enough to disorient me enough that i fall to the floor, or onto a seat if its directly under me, i have no control where i fall. my vision looks like someone washed out all the colours and its all muted and white. hence why the episode is often called a White Out, i loose my peripheral vision, get odd stars in my eyes and what i call 'black stars' - like normal stars but theres dark spots instead. and
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