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Everything posted by fiona-jane

  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
  16. 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 when closer to black out i get tunnel vision. i also cant focus my eyes, no matter how hard i try. just cant do it! my hearing mutes, and its like i'm hearing stuff while underwater, with an odd white noise, often like static on a tv or a ringing sound (like tinnitus ringing). i cant think clearly, i go proper confused and if i'm talking i slur and get my words all the wrong order, or my brain gives me completely the wrong word but i think i've said the correct one, so i'm impossible to understand. i feel drunk and if walking on my sticks i weave all over the place sometimes get a headache, if the episode is lasting a long time. apparently i go super pale, and look exhausted (the expression in my eyes apparently) the closer i get to full black out the nausea gradually builds and i get all dribbly i feel all hot but have cold sweats and sometimes shiver a few seconds before i black out my left eye twitches side to side (i wasnt aware of this, it was pointed out to me at a recent hospital appointment where i fainted). i get this odd feeling of impending doom, like something really bad is gonna happen and it comes with a funny empty feeling inside my upper tummy area, recently found out that this is blood rushing towards my lower body through the big blood vessels that run from the heart area to near the pelvis. i also get a massive increase in heart rate and right before i black out my blood pressure crashes- up to that point it stays up to a nice normal ish level fi
  17. the best vitamin D is made by the skin in response to sunlight on bare skin (ie no fabric or sunscreen on arms, face etc). the body makes 90% of its vitamin D in response to sunlight hitting the skin so it'll improve a deficiency far quicker than oral medications. theres also a lot of vitamin D in egg yolk and oily fish. the body always absorbs food items a little better than artificially created substances. i have a Vitamin D deficiency cos i have a mild sunlight allergy and not able to get enough sunlight to make sufficient vitamin D. I also have tons of gastrointestinal problems and i have lot of problems with vitamin malapsorbtion so dont get any from my diet. even though i take a medical multivitamin and drink ensure drinks that are fortified- my levels dropped to 7nmol/L (they should be at least 50nmol/L). so i have to take even more orally and now take Kalcipos-D which seems to be working well. in my area the liquid and injection versions are not available in my areas but the doctor said the injection is probably the best one as i dont need to absorb it through my intestine. but if this method is available it may work better than oral medications. many vitamin D tablets contain calcium and i picked Kacipos-D cos it had the lowest amount of calcuim. excess calcuim in the blood can cause problems and has some pretty horrid symptoms (inc fatigue & lethargy, nausea, vomiting & diarrhoea, irregular heart rate, low blood pressure, confusion and fits),, and as i already have a calcuim rich diet, with calcuim in my ensure drinks and medical multivitamins i'm playing it safe . i already have a huge calcium intake so i'm at risk of this, but if you're intake is low or normal then you're at low risk taking in too much calcuim with your vit D tablets, unless you're unlucky. but its worth saying it anyway, just in case anyone is having some odd symptoms that have no obvious cause fi
  18. i naturally have a lot of muscle, and i've been training in parabadminton over the last 6 months and my muscle mass has clearly gone up as you can see it (i also build muscle quite easy, which is fab considering i have EDS and need all the muscular strength i can get to hold my joints together). i see a dietician cos i have gastroparesis and struggle to eat solids and now all patients on special foods need to see a dietician every 4 months.... i always dread my appointments cos they always weigh me and i'm always considered rather overweight (even when i looked like a little walking skeleton covered in skin) as they go by BMI scores. and i've not had a single dietician thats taken into account my muscle mass, and the fact i have a large frame size..... they just go by the number. i'll never hit my 'scientifically determined weight' as its easily 20kg lighter than i can get without dying. again, this is not taken into account by them. and as i'm extra chubby at the moment i have to fight to get the ensure drinks i need cos the dietician says they're only for those who are loosing weight.... ignoring the fact that if i stop the ensures my weight plummets (last time i had to stop i lost almost 2 stone in just over a week cos i had practiclaly no calorie intake) and that i'm already malnourished so i get super sick when my weight drops off like that, and she thought i was making up the research that shows that many gastroparesis patients only need about 60% of their predicted calorie intake, which means many are overweight cos its hard to get all your nutirents in that few calories (for me thats only 800 calories a day). i've been technically starving since i was born but body had put itself into starvation mode quite quickly and as i've been there for 30years theres no chance of me getting out of it by eating more (last dietician didnt believe this and made me promise to eat 1000 calories a day. hence why i'm fat now.). i have a copy of that research paper on my computer- if anyone wants it i can email it, just send me a pm arrrggghhh! why do so many medical type people have zero common sense? oh and i've recently had my parents whinging that i've put on weight and look awful, totally disgusting, which i know i dont look. i look fine. and they didnt notice that i'm the healthiest i've been in years. they want me back to that skinny malnourished girl that i was in 2007. when my bmi was around 24.5 (even then i was borderline fat- you could count my ribs i was so thin). i never want to feel that sick again so i'd rather be fat! ooh, essay..... sorry! fi
  19. I also only go if i feel at risk of imminent death- last time i went for my PoTS (but i was undiagnosed then) was in 2009. i had bad tachycardia and chest pains, dizzyness, shortness of breath etc and after my initial assessment (basically they just asked me questions and gave me a ECG that lasted no more than around 10 seconds so none of the skipped beats etc were picked up) i was made to wait back in main reception, totally unsupervised, for 9 hours. for at least 2 hours of that i was unconscious and not sure if i was asleep or i'd blacked out, i was out for so long i snapped my thermoplastic wrist brace by leaning my head on it (and that brace could take quite a beating before any cracks develop). there is no drinking water available in the main reception, or any food. to get water i had to walk into either the majors or minors departments and carry my water.... while using crutches. the walk was a good 200-300 meters. and at that point i could only walk around 30 m (less now). and no one would go and get me some, no matter how often i asked. was just told that they cant leave their desk so there was nothing they could have done.... they had phones but clearly had no idea how to use them to call a colleague to give me a hand. after around 6 hours i went and got my own, and passed out and was left on the floor...when i came to nurses were just stepping over me! should have had blood tests and a longer ecg when i arrived so the team couldn't do much when i finally got to see them, i had to then have all the necessary tests and wait for the lab to process my bloods.... and then was just discharged cos they didnt know how to help me. finally got out of the hospital at around 2am (after going at silly o clock in the morning) having not been able to eat or drink for best part of the day. i was livid! i clearly know more about my condition than they do and so theres no point going to A& E with a PoTS related problem that i cant solve on my own.... if i dont know they certainly wont know! oh, and when i went with a recent dislocation that i was struggling to fix i was told that if its a recurring problem then its not an emergency and i cant be treated by them. so now when i go i rarely get past the reception desk- staff come out and tell me i should go and see my dr and they wont treat me. even if its 7pm on a friday and my drs surgery is closed. and then wait 2 weeks for an appointment. so i'm expected to leave a joint dislocated for up to a fortnight. i HATE hospitals. especially A & E departments. so i'm drinking electrolyte fluid by the bucket load to hopefully mean i wont need IV saline in the near future... and eating a mainly liquified diet so my guts wont pack up (i have gastroparesis) meaning i need to be tube fed.... soooo dont want to go into a hospital for anything for a very long time!!!! fi
  20. this makes my PoTS symptoms worse too, and since getting my wheelchair my symptoms have eased off slightly (as long as i dont overdo it)- i think cos i'm not standing up so often. i have to stand to get my chair out of my flat's front door but from that point on i stay sat down. usually by the time i get to teh shops i've been up and down like a jack-in-the-box and so usually faint as soon as i tried to walk around, now i can usually stay conscious enough to get what i needed and get home safely as long as i dont have to stand up i dont feel so bad. i figure i'm just not designed to be bipedal! fi xx
  21. Hiya, I take Forceval multivitamin & mineral capsules, Folic acid, Vitamin d & calcium tablets, Ensure drinks (i have a lot of digestive & malabsorption problems due to my GI problems). I also use Nuun salt tablets (that get added to water) and drink between 3-4L of water a day. also eat a lot of salt in my food, but less than i used to before i started on the Nuun tablets. for me, the nuun tablets, in additional to a slightly lower amount of salt loading seems to work better than just the salt loading. they're expensive but seem to be making a difference so far (only been using it for a month or so.... so still playing with the amount of salt & nuun fluid works best, hopefully it'll work even better once i've got the idea amounts ) also take peppermint capsules when my tum gets very bloated and drink herbal tea- at the moment i have camomile, dandelion, nettle, peppermint and a mixed tea with lavender in it in my cupboard at the moment and drink one cup of a random tea every morning (i close my eyes and do a lucky dip to pick it ) fi.
  22. me too! seems to keep me better hydrated than just drinking water or squash, i guess the salts help me absorb the water properly
  23. i also get a drop in heartrate after i exercise. was told that its cos the exercise kinda reminds your body how to regulate it's heartrate so the tachcardia often settles down for a while. i usually get a few hours of reduced tachycardia after an hour of so of exercise. shame it wears off but it's nice while it lasts . occasionally after half an hour of exercise my heart rate drops into brachycardia rates, and stays down there for 15-20 mins, but after it my heart rate stabilises into more 'normal' rates and i get my break from the tachycardia. i assume it's just my body remembering how to slow my heart rate down and overdoing the correction just a tad. it never gets to dangerous levels (never below 44bpm) so i just keep my eye on it rather than calling my doctor. it always fixes itself, but it does make me very drowsy. fi
  24. i was told to avoid any pre-made 'sports' drinks by my PoTS doctor, she said they're pretty much just sugar & sweetners and the salts are not in high enough amounts to do anything useful for me... i now buy the salt tablets that you pop into water. they've got enough sweeteners to mask the taste of the salts but plenty of the various salts. they're designed for runner etc doing endurance events that will deplete them of salts and cause them to get cramps etc.. i get these ones: http://www.nuun.com/#/?exn=whatisnuun i used to just eat more salt and drink more water but it wasnt working as well as it needed to, so i switched to these. so far they're working and the drink tastes ok. fi
  25. i feel better when i dont eat, my tum often goes on strike (i have gastroparesis) and the longer i go without food the healthier i feel. a while ago i had a prolonged period without food (more than 4 days) and i felt great- no nausea, no tum pains, no reflux.... but unfortunately my PoTS symptoms eventually flare up and get super bad so instead of fasting i do a liquidsed diet for a few days while i let stuff settle and then go back onto solids. i overdid it on friday evening, even though i didnt really eat that much solid food but that was a horrid evening. body rejected it and got rid of all of it, even what had entered my intestins. was a rather challenging evening but luckily it;s not been quite so bad since (the pain and bloating is all there but not the actual rejection). and i dont know if my symptoms with sugars are similar but i find they make me super thirsty and kinda shakey and my sugar crash seems to be more pronounced and occurs faster than in my friends who dont have dysautonomia. but my reactions to artificial sweetener are even worse (along the same lines as my sugar symptoms, just much worse. fi xx
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