fiona-jane

my cognitive function is rather dependant on whether i'm stood, sat or laid down- it's completely normal when i'm laid down which is why i naturally wanted to type assignments and do my reading, revising for exams etc when i was at uni. its a little affected when i'm sat and completely rubbish when i'm stood up. so bad that i cant count to more than 10 as i run out of fingers... it's shockingly bad.

the brain makes us pass out before it gets hurt from the hypoxia (and so oxygenated blood can slosh back to the brain) and as congnitive dysfunction caused by the hypoxia (due to blood pooling in the lower limbs and abdomen) and so once the PoTS has gone the cognitive dysfunction should go with it, and so congnitive functions would be roughly what they were before PoTS started.

fi

if i just salt load without also loading with fluids i feel awful, but with the fluids i feel so much better. i was told to eat 10-15grams of salt (sometimes do more if i'm struggling with bad symptoms) and to drink at least 3 litres of non diuretic fluids. that seems to work for me so it must increase my blood volume enough that i'm only a little hypovolemic.

fi

i do quite a lot of exercise but most of it is done sitting - i play parabadminton in my wheelchair and find my PoTS stays relatively settled, as long as i rest enough between games and training exercise. after about an hour of it i tend to feel so much healthier and my PoTS symptoms settle right down and stay that way for a good hour or so after i've finished exercising, but i need to exercise hard enough that i get a bit sweaty and hot for this to happen. i also cycle with my little bike frame that sits on the floor (and i sit on a chair). also do my physio but most of that is pilates exercises.

if i try and do any exercise while stood up (or relatively stood up, like on a normal bike) i feel like death in just a few seconds. in about 5 mins of relatively intense exercise i tend to black out (or get super close). even just walking is really difficult and makes me really dizzy. cant be a coincidence that i can do tons more and have my symptoms stay relatively settled while i'm sat down

maybe try exercising on a recumbant bike and see if you find that easier?

fi

when i feel like i'm gonna pass i out i just sit on the floor or lay down if it doesnt ease up with being sat. the 1st few times were the hardest but it gets a lot easier, now i dont really care that others will see- better than passing out and someone calling an ambulance!

since getting my wheelchair i've found shopping tons easier, i now enjoy it again- i used to hate it cos it made me feel so ill. i always carry salt and water with me and when i feel my blood pressure dropping i have a little salt and chug half the little bottle of water- drinking around 250ml of water really quickly (chug it down fast) pushes the blood pressure up quite a lot and often helps me shift the symptoms. i've used it a lot in the last few weeks

fi

i'm also supposed to drink at least that amount and really struggle! it seems to be a huge amount of fluid to drink in one day! i find it easier to drink it from bottles of water (or very diluted juice) and so i can track how much i've drank.

the only time i hit my 3liters is if i drink it from an empty squash bottle that holds about a litre - if i keep it next to me i can sip it all day, bit by bit and find 3 bottles seems a smaller amount than 3 litres to my brain. i try and have half a litre with my meals (using one of those little plastic bottles so i can judge the amount), then have half a litre in the morning and half a litre an hour or so before bed (with my evening meds) and so i only have to drink another half liter throughout the day to reach my target. when i think of it like this it makes it a little less daunting.

but if i get anywhere near my 3litres i need to pee all the time! every hour i'm desperate for a pee and my urine is always dark so i'm still dehydrated so clearly need more than those litres.... have no idea how to manage it though, without getting a catheter fitted and a bag on my leg so it'll continually empty my bladder! i'm getting really good at telling where the public toilets are in my local high street!

fi xx

my tongue does the same if i eat too much refined sugar (but not if the sugar comes from fruits etc), never looked at it but it goes all furry and i get a slightly bad taste always in my mouth.

i'm naturally a very yeasty person though, have always had problems with thrush and seborrhoeic dermatitis. i treat the external thrush with ketoconazole and my mouth thrush has always cleared up on its own as long as i completely avoid refined sugars for a few weeks but i think there's a tablet that can treat it if needed.

have no idea why i'm more prone to thrush than most 'normal' (those without illnesses etc) people, dunno if it's related to my dysautonomia or not but does seem rather odd that me and my friends with dysautonomia and PoTS seem to get it more than 'normal' people do. could just be a coincidence though....

fi

hiya,

this is probably a stupid question but.... have you done a pregnancy test recently? you mention that you've not had your period and many people experience a worsening of symptoms during pregnancy, and i've had friends that underwent several cycles of fertility treatments unsuccessfully only to get pregnant naturally a few years later.

fi

hiya,

mine is worse when i'm hungry too, or tired, or stressed etc. i suspect my body doesn't like anything that puts it under stress (like fatigue, low blood sugar, orthostatic changes etc) and so flares up it's symptoms when it encounters any.

fi

i've done the sleeping in my clothes tip before when i had to get up at silly oclock for a 9am hospital appointment on the other side of London. i was up with my insomnia till just a handful of hours before i had to get up so was desperate. it worked quite well and no one could tell i'd slept in them

forgot to add to my earlier message that getting up early tends to make me feel rough by the early afternoon so i need to schedule several naps throughout the day to make me feel human and able to function. as long as i dont do it too regularly i dont get any lasting effects from it although i do feel a little fragile for a day or 2 afterwards.

fi

i agree with the others that getting up early helps, and my PoTS doctor gave me a neat trick that seems to be helping me lately- she said if you drink about 250ml of water before you get out of bed in the morning (and drink it all in one go, and fast) it pushes the blood pressure up. in me this results in my heart rate being lower when i stand up first thing in the morning and for me this means i have less symptoms. i keep salt by my bed too, and treat it like a medication and have a pinch or 2 with my morning meds. also keep my face & body wipes by my bed so i can do some of the morning wash while still sat in bed and so limit how long i'm stood up before my body has gotten used to being upright.

i get a lot of nausea too and so keep my anti-nausea meds by my bed and this is the 1st tablet i take in the morning so i dont throw up the rest of my meds,

when i'm very tired and i just have to get up i try and do my morning tasks sat down (ie i'll brush my teeth sat down, use my perching stool in the kichen even if i'm only popping in for a glass of water). ooh, and another tip myconsultant gave me was to manually move my blood from where it may have pooled overnight by clenching and relaxing my tummy muscles, and flexing and pointing my feet to get my calf muscles moving etc. that works quite well for me too.

fi

hiya,

i'm sorry you're not feeling well <hugs>

most oral decongestant medcations seem to make my PoTS worse (dunno if that's just me of if it's the norm for PoTSy people). so for a sore throat i use a honey and lemon syrup and to clear my head i add a few menthol crystals to some hot steamy water and breathe in the mentholly steam with a towel over my head (and over the bowl). when i'm out and about i put some olbus oil (or vics sinex stuff) on a hankie and sniff it to clear my nose and sinuses. and for the fever and extra aches i use normal paracetamol

i'd prefer to use those all in one preparations that you buy cos that'd be soo much easier, but for me the extra work is worth it as i feel soo much healthier without the PoTS flare that i always get with the ready prepared stuff. for a long time i use to think the cold flared up my PoTS massively but actually the flare is much smaller than i expected- it was mostly the oral decongestants!

hope you feel better soon!

fi

i dont get so scared now i have the diagnosis (before it i was very scared by everything, even the small symptoms as i had no clue what it was) but i still get rather concerned about symptoms that are bigger than i usually get (or symptoms that last longer than usual episodes).

for me, i find that information calms me down so i have a blood pressure monitor and a little pulse ox machine that goes on my finger and tells me what my heart rate and blood oxygenation rates are. when i have an episode i check my heart rate and if its still within my safe limits i calm down as i know i'm not in danger. i read up on all the info i could find about PoTS so know many little self help techniques (eg drinking approx 250ml of water in one go to push up blood pressure, doing the valsalver manoeuvre to stop my palpitations and slow down my heart, eating lots of salt and drinking lots of water, laying down when heart rate starts to rise above normal and/or i get dizzy etc) so i'm calmer than i used to be cos i can at least attempt to do something to help rather than sitting worrying about it. actively trying to help the problem seems to distract me enough that i dont worry so much

my pulse ox machine is the biggest help to me in keeping me calm- often it feels like my heart is racing but when i check it it's rarely as high as i expect it to be, and if it is high i know to lay down and so i often treat the problem before the symptoms get really bad. they;re only cheep to buy and mine is on a lanyard so i can hang it round my neck when i'm out and about (unless it's raining heavily) and can check my heart rate real quick- takes just a few seconds. and seems to encourage people to ask me about my condition and so i find i educate people about PoTS more than ever these days!

fi xx

today someone reversed into my car while it was stationary at a junction and is believing that its all my fault......

i followed her down the road and her car pulled up to the junction lines so i followed and did the usual- handbrake, neutral thing. checked my watch and glanced at an approaching car while i waited a few seconds for her to find a gap in the traffic and leave. she then reversed into my car without warning and really fast and didnt stop straight away so she shunted me a few cm down the road. she was right up at the junction and the lines on the road and signs indicate that the only way you can go from that junction is left.

i was at an angle to her as the road we came out of was at an angle to the junction and so she's only dented my wheel arch and scratched her bumper so not serious. but she's making out like it's my fault and that i hit her.... with my stationary car! she kept yelling that i'd run into the back of her car and said it over and over and used a very agressive tone. even called me up on my mobile and tried to bully me into admitting fault and apologising. and she wanted my insurance details. so i gave them. insurance company will have fun with this one cos the fault is clear! she said the person behind is always at fault but thats not what the law states so she's in for a shock when the insurance company work out who's at fault etc....

worries me that she had no idea i was there as i'd followed her down the road for about 100-200meters from where she pulled out of the parking spaces and was clearly behind her while she reversed. she claims i came out of nowhere.... she seriously needs to improve her observation skills!

but, seriously- how can a stationary car hit a car that is currently reversing? surely it's the reversing car that creates the impact... and i always thought it was wise to look in your mirrors while reversing.... and you should do it regularly-if she'd been doing this properly than she'd have seen me well before we got to the junction as i was following her from where she left a car parking space a few meters infront of me.

trying to bully someone into admitting fault when it's clearly their own as they were the ones that did the act that caused the impact...

arrrggghhhh! why are people like this allowed to have driving licenses???!

fi

hiya,

I have sinus tachycardia too

my heart rates:

when not flaring:

resting heart rate when laying flat 56-65bpm

resting heart rate when sat up 75-110

resting heart rate when stood 120-160

first thing in the morning and up until i've been up and about for a few hours my heart rate is higher, my heart rate when i sit up in bed first thing in the morning is usually around 140-145 bpm ish and when stood it's usually 165+ and i often pass out.

my heart rates when active are usually much higher when stood, although they dont raise as much when i'm out and about in my wheelchair. i figure i'm not designed to be bipedal

when flaring:

resting heart rate when laying flat 90bpm ish

resting heart rate when sat up 100-130

resting heart rate when stood up 160- 210 (but has gone as high as 315 when i was in my 'super flare from ****' mode in 2007)

i checked my maximum heart rate and its around 189-191 bpm. the website i got the info from said you should avoid working to more than 80% of your max heart rate which for me is around 152bpm. no wonder i feel like death when my heart rate goes over 164bpm!

fi xx

i have both too

also have the trouble swallowing at times, but my gastro-intestinal tract is just rubbish and doesnt get the right info to function properly so i struggle to swallow, digest etc.

i often find it hard to separate conditions in my head and work out what symptoms are from what, but i think the fibro for me is mainly pain and tirednes- my whole body feels like a fresh bruise so whatever touches it hurts like heck, even fabric. my PoTS is the dizzyness, confusion, faints, tachycardia, palpitations etc. have no idea which causes the brain fog but judging by its severity at times i suspect it's both of them

fi xx

my hands do it too, had to stop wearing my rings cos when my fingers swell up the rings start to cut off my circulation. my hand pooling is very bad at the moment but in the past it wasnt so bad so i'm hoping to be able to wear my rings again, eventually!

my hands never go as pink/purple as my legs do but if i raise my hands after having them down for a while you can clearly see the blood draining out of them. it's a very good party trick!

fi

hiya,

i have these as a relatively normal part of my Ehlers-Danlos Syndrome, it makes my capillaries leak and leaves me covered in little red dots. it also makes my tissues fragile so if i press too hard on my skin i break my capillaries and results in grouped areas of petechiae.

i was told that as long as i haven't got large areas of very dark bruising that i shouldnt worry about them.... but dont know about petechiae in people without EDS so it's probably best to visit your doctor if you see lots of them, or if you get a lot that spring up after starting a medication or getting a virus etc...

fi

i found that my bp dropped when i first started taking my loratidine for my spore allergy and had lots more palpitations but i'm able to increase my salt and fluid intake to take into account the pressure dropping effect of the med. for me it seems leaving the allergy to go unchecked was causing me far more problems with my PoTS as it made me really quite ill and i constantly had a high fever so repeatedly got heat stroke (till we figured out it was an allergy and not just a virus- day after being on anti-histamines and the fever almost vanished. hopefully once the rotting leaf litter is no longer on the ground i'll be able to stop the anti-histamines as its the fungus that grows in places like that which is causing my allergy problems...

i think its a case of working out which is the worst evil and running with it

fi xx

hiya, here's my answers-

What type of POTS do you have (i.e. Hyperadrenic, Neuropathic, etc..)?

Not sure what the name of my PoTS is but it's secondary to my Ehlers-Danlos Syndrome.

What underlying cause are you aware of for your POTS or the shortness of breathe?

i have asthma but not 'true' asthma as none of the preventer medications work. part of my breathing problems are due to all my tubes being rather floppy so they constrict to varying amounts when i breathe out. unlike in 'true' asthma, i struggle to breathe in but breathe out with relative ease, was told that i have to force open my tubes when i breathe in;

part of it is 'air hunger' cos my oxygen saturation likes to dip when my blood pressure drops & heart rate spikes. consultant said it was just cos my blood tends to pool in my legs, arms and abdomen rather badly and the more blood thats down there means there'll be less available to get sent to the lungs for the gas exchange to happen. and so my o2 saturation drops. if i stop what i'm doing and take action to return the blood to my heart and lungs (ie lay down, fidget arms and legs etc) then it pops back to normal almost immediately so i'm in no danger. but the lower my saturation the more air hungry i get, which is rather counterproductive cos it makes me breathe faster and less deep so i eventually start hyperventilating which just makes the whole situation worse. and for me, a small part is anxiety based (but totally subconscious). at a primitive level my body panicks when i cant breathe, or if i get too hot and cant cool down without help from the conscious part of me, or when blood pressure suddenly plummets etc and i expect this is to make me pay attention to it and take action to help rectify the situation.

i also get spasms in my lungs and get areas of intense pain, that i assume are just pleurisy pains.

What Medication are working for this symptom?

i take ventolin for the spasms and when i get very wheezy from the airway constriction and take buscopan for the spasms. i have to use both sparingly as they naturally lower blood pressure and encourage venodilation so they usually make my other PoTS symptoms worse and i'm at a high change of fainting. i find that if i have a very high salt and water intake then my pooling is not as bad and i loose a little of the wheeze and breathlessness.

i also do breathing exercises to open up my lungs and make sure i'm using all of my lung and not just the top. at the moment i find the easiest way to do this is to sing. it's very hard for a few mins and i get close to fainting but after a few mins my lungs open up and breathing is much easier.

i have an allergy to fungal spores and at this time of the year it's quite bad (and makes me wheezy) so i take an antihistamine. loratadimei tihink

ooh, just thought- my breathing gets very bad if i reflux up into my mouth with no proton pump inhibitor meds in my system, dr said its the relatively heavy tummy gases irritating the lining of my airways. but they are nowhere near as irritated when i take my lasoprazole!

fi

hiya,

i really struggle to cook when my PoTS is bad (or when my EDS is making my joints worse than normal). so i keep a supply of stuff in the freezer, like fish fingers, potato waffles, potato wedgies, frozen chicken with a ready made topping etc so i can just get it out of the freezer and stick it in the oven. also freeze extra food when i properly cook so i have to option to use these if i want something a bit healthier. i also buy those packs of rice that just need to be microwaved for a few mins, they're not that cheap but a good source of carbohydrate when i cant cook properly. also tend to find jacket potatoes quick and easy to cook in the microwave- especially when i just put a little ( bought grated) cheese and beans on them

tend to stock up on tinned soup too, and have been known to eat cereal for every meal as i prefer porridge than sweeter cereals so it's quite healthy. keep a pot of dried fruit near my porridge and stick a handful into my bowl to make it taste nicer. and i cheat when making my porridge- i just add water and microwave it, then add some cold milk to cool it down.... much easier that cooking it on the hob with milk, and tastes almost the same

when ready meals are on offer in my local supermarket i buy a few and freeze them, as 'just in case' options...

ooh, i also have a slow cooker that i can chuck stuff in and leave all day for it to cook- so i can go lay down and nap while its cooking. i try to aim for easy and quick foods that are either so quick i can get it all done before i get too close to a faint, or foods that i can put in the oven or microwave and leave to cook while i go lay down. and i prepare all foods on a chopping board held over my knees as i cant get my chair close enough to the worktop to use it, maybe that would work for you too?

fi

i never really fully noticed this before but i do tend to get very dizzy when i go up in a lift, havent used escalators in while as i use a wheelchair now but i dont remember getting symptoms when i last used them. kinda get oddly disoriented, especially in the really fast lifts. the very slow ones i dont react so badly to

fi

hiya,

i take domperidone to help me eat and this is quite a good anti-nausea med. my nausea is awful without it, so bad i retch over and over and cant make it stop. so i make sure i take all my dom!

i also get tummy cramps (and cramps in my oesophagus and intestine) and was prescribed buscopan for them as it specifically works on the muscle inside the tum etc. been on it a few months now and has made a big dfference to my quality of life, no longer have quite as much pain in my tum and also seems to work on my lungs too- asthma symptoms ease up when i take a buscopan tablet. which is fab!

fi xx

hiya,

when i get dehydrated quite badly i drink rehydration fluid, the type you can get in powder form and mix in with water. if you drink a large amount of water or sugary drinks etc quite quickly you can upset the balance of salts in the body. even 'sports' drinks that say they are rehydrating actually arent that good as they dont contain enough salts. the rehydration solution contains the ideal amount and balance of salts. doesnt taste nice but makes me feel loads better really quite fast.

not sure where you are in the world but here in the UK we have Dioralyte (example= http://www.amazon.co...dp/B001E48ORC) so i use that or the cheaper generic sachets i can sometimes find in the supermarket.

hope you feel better soon .

i've had these symptoms since i was about 4 or 5 years old (i'm 30 now) but up until 2008 no one believed me and was labelled an attention seeking hypochondriac. diagnosed myself with eds in 200 and demanded to see the specialist (who confirmed i was right about every condition i thought i had). finally had my PoTS formally diagnosed this july.

i have neither but react badly to wheat and wheat derivatives (eg wheat starch). i get the usual allergy symptoms and not sure if its them that trigger my PoTS or something in the wheat. just dont eat it now. but annoyinly- gluten free food isnt necessarily wheat free which makes eating at restaurants even harder cos they dont seem to understand that i cant eat wheat starch but can eat rye and oats........ they assume its all related to gluten. sigh. got really good at reading labels!

fi