becky

hi dizzygirl, i just have to say that i know exactly how you feel, my cardio has just postponed my appointment til january (i've been waiting 6 months), and my symptoms are getting worse again after 5 months of pretty good health for me. but, we are very special, very strong people, and people that decide to take us on and label us with their own stupidity are in for a big shock, we will not hide in the corner and take their @?!*, we will fight! i may feel bad at the moment but i'm mentally strong, any body who isn't wouldn't cope with this illness, my sister says she'd die if she had it, she says that she wakes up every morning and says, "is this illness real or is someone messing with us?" and she doesn't even live with me to see the really bad days!! if you feel like sobbing do it, you might feel a little pants afterwards but we all need a good cry, and i think we deserve to feel sorry for ourselves every now and then. sorry i went on a bit, great news about your scooter, keep your pecker up! thinking of you and sending happy thoughts and hugs becky x x x

hi dayna, just thought i'd add a "me too", this only started happening about three months ago, i'm still trying to get the Depo Provera injection out of my system (last injection was 11 months ago) so my hormones and periods are all over the place. i also take acidophilis and it's not working. i'm going to try the less sugar that calypso advised (thank you) i eat loads of sugar around my period. becky x x x

hi deeplyset, my faints sound exactly like yours, usually takes me about 40 minutes to recover (on a good day) but then after the 4o minutes i have to sleep cos my arms and legs don't feel right and i get very confused and upset. they thought i had cataplexy at first because i couldn't move after fainting and my eyes would be glazed and my speech slurred, like i'm drunk!!

erm, i'm not very creative either my name is rebecca and i shortened it to becky, which my parents hate, everyone at home calls me bebs though cos my little sister couldn't pronounce my name and kept calling me Be-be, it stuck!! i love hearing everyone elses stories though especially roselover, pers, and briarrose, i love all things disney!

yeaahhh! and woohoo to you!!! hope this will make your life much better. smiling lots for you becky x x x

hi, i'm sending you hugs and good thoughts, i've not had cancer but i found a lump in my breast when i was 19 and had to have it removed it was the scariest four months of my life, two before the operation and two after waiting to hear what it was. just wanted to let you know i'm thinking of you and wishing you all the best for your treatment. becky x x x

hi dizzygirl, me and my mum were just discussing this today, my mum had her gallbladder removed about six years ago and now she has high levels of billirubin which she has also been told are related to bile and gallbladder, she's going for a liver scan next month but they think that my mum, me and my aunty all have something called gilberts syndrome, which causes your urine to be a lovely flourescent green colour!! don't know much else about it sorry, i'll ask my mum and post back tomorrow - she's a walking medical dictionary on it! hope your tummy feels better. becky x x x

once again i am so glad for this website. all of my friends think that i am the laziest person they know and they all say i am the worst housewife! my fiancee does most of the cleaning, well all of it apart from the kitchen, he is a bit finatical about cleaning so i am very lucky. i try to do the dishes and washing every day but that is normally all i can manage, on good days i make huge pans of lasagne or stew and freeze them in portions so i've got good healthy meals for bad days. i really love cooking and that's the worst thing about this cos i used to be running around the kitchen cooking all sorts. I don't do hoovering cos i find it to exhausting and it always makes me dizzy, we've lived in our house for a year now and i haven't hoovered once!

hi, i had stroke like symptoms too, numb down one side especially my face, my eyelid and mouth were drooping and i couldn't see out of one eye, i was also diagnosed with migraine - but i've had brain scans and an EEG and they don't know what caused them. i'm also tachy most of the time and i have pots and vvs. these symptoms seem to have stopped (touch wood) since i started on my medication (florinef and paroxetine) Hope it gets better for you. becky x x x

hi, my doctor thinks that i have reactive hypoglycemia cos i pass out after eating baked potatos! i have suffered with the "shakes" for years, so do most of my family, i have to eat every couple of hours cos i get shaky and kind of lose all concentration, can't form sentences properly, have no concept of danger, just walk around like i'm half asleep, the worst thing is that apart from the shakes i don't notice, so other people have to ask me when i last ate - i'm still getting used to it, i now take food everywhere with me.

hey, this is really unfair on you, i know you were hoping to find out something from these tests, don't let it get you down (and i know how hard that is) we'll find you some help. i know you said that you were feeling "well" when you had the tests but did you also say they weren't done in proper test conditions? this really matters, i don't know what to do but write and complain to the clinic in london, write to your mp (my mum did this he wasn't much help to be honest) and try to get your cardiologist to recognize what he is seeing in you and start treating it. this heatwave has really affected me aswell, i have very bad vertigo and feel really nauseous also my pulse and bp are all over the place, haven't been to college in three days. i feel so mad for you that you spent that long in hospital for nothing, i understand your frustration and anger. god, i wish we could just lobby parliament and get all these doctors off their bums and do something about this, i am so angry about this, i already wrote to tony blair to tell him what i thought of the nhs and the treatment of pots sufferers, he didn't write back, i'm going to try again though. sorry this turned into a rant. i'll be more positive tommorrow hopefully, going to see my g.p and see why i've all of a sudden got serious vertigo again, they love me!! (ha,ha!)

are you on any medication? i don't think that i have eds however i am covered in stretch marks, this happened around christmas, i'm taking florinef and my doctor seems to think that this is what has caused my stretch marks, they started on my tummy but now they are all over my waist on my calves my thighs and my breasts - i look like i've been attacked by a lion!! take care becky x x x

i love this web site!! When i first got pots i used to feel drunk all the time, i'd be giggly walking into walls, dizzy and feeling really nauseous, then i'd pass out, woo hoo!! all the fun of a good night out without spending any money! i am on medication now and i hardly ever feel like that anymore - i still get brain fog and feel a bit disconnected and i still get the vertigo but i don't get giggly and thaqt was the only fun bit. if i forget to take my tablets (which i do a lot cos my memory is terrible and i always think i've taken them when i haven't) then i get the dizziness straight away.

Hi everyone, i'm new, i'm becky i'm 23 and i have POTS and vvs. anyway, i was just wondering if anyone else has tried accupunture? i had a two month course last year to help me with pain management for my migraines, i couldn't get it on the nhs as my doctors didn't believe there was anything wrong with me, which seems to be a common problem with us! i found that this really helped with my migraines (i didn't have one for four months and now when i get them they are nowhere near as severe) but it also helped with my dizziness, obviously i wasn't cured but i did feel a lot more relaxed perhaps that helped my symptoms, i'm not sure. i just thought i would post this and see if anyone has tried it and also it might be something that you were thinking of trying. i am going to see if i can get it on the nhs at my new address in wales because i am getting quite potsy again, vertigo, dizziness fainting palpitations etc, and it helped a bit last time! take care everyone. becky x x x

Hi mary jo, I don't work either and i do feel guilty, but that's more because it's so difficult to explain to people how tired and dizzy i feel all the time, i still think that other people will think i'm making it up! i haven't worked for a year now - i've had pots for three- i was working at a gym in the admin department but they sacked me because i kept passing out and i did'nt have a diagnosis for what was happening to me, my fiancee and i had just bought our first house, it was a nightmare, my last day in work i managed 10 minutes before i passed out over my computer!! I've just started a part time i.t. course because i couldn't stand being in the house on my "well" days, i thought that as i hadn't passed out for four months and apart from some quite bad vertigo i'd be fine, we are now five weeks into the course and i have managed about 10 days - i've passed out twice in college so far but they are cool about it so i don't let it stress me, if it takes five years i'm going to finish this course. i think at one point i stopped believing in me and started listening to the doctors who said i was mad and thats where i got my guilt from, i don't feel as guilty now, if i could do anything about it i would so whats the point in worrying? sorry this turned into a bit of a rant, i always forget what my original point was. i think it was, just take it easy, listen to your body, if you do become well enough to work again you will, don't stress and don't push yourself, cos your body will punish you for it later on. take care and feel good becky x x x

Hi christine, i get nausea much more now than i did last year, last year it was only when i passed out but now i feel sick every morning and after eating and with headaches - not sure why. anyway, the nausea that you are getting with a sensitivity to light sounds like migraine, i know that some migraines show in the form of stomach ache and not headache, or the nausea can just be the start of a migraine - i get that too. talk to your doctor and see if there is anything they can do. take care becky x x x

hey pers, you need to get to see a cardiologist, i've had this happen to me, really bad chest pain and heart skipping beats (my mum was the one who found this) we told the cardiologist and he got me a heart monitor, the first one i wore for a day, and then i had one for a week then i had one for two weeks and then last month i had another one for a week, i haven't had any results from these though, but i'm assuming the cardiologist knows what he's doing. again make sure you tell your doctor objectively - without emotion, they seem to deal with us worse when we are emotional. let us know how you get on. x x x

my symptoms go like a roller coaster aswell i'm just getting used to my triggers but there seem to be even more than there were last year, does anyone else get that? and i have even more symptoms, like just when i'm starting to feel good i get chest pains out of nowehere - i don't understand it. Oh and ernie i'm with you my doctor asked if i'd heard of munchausens, and even after i was diagnosed with pots my gp said that they should still investigate psycological illnesses!

hi, Pre pots i took prozac for depression and i found that i couldn't function properly, i felt like i wasn't running my life and hated being on it. My cardiologist suggested that i try an ssri to stop me from collapsing as often, i was reluctant because of my history with prozac but i decided to give it a try. I now take paroxetine as well as florinef, and i have found that it has helped with the collapsing but not with anyother symptoms, i still get chest pains and breathlessness and i am succeptible to mild bouts of depression but i'm not fainting as often and that was definitely worth taking it for. Give it a try, for about six weeks so it's in your system, if you don't like it stop, there are loads of SSRI's on the market.

Ha, ha, that was soo funny, but unfortunately true! I heard a doctor in the hospital (talking about me) ask if another doctor had ever seen anyone with munchausens (you know the one where you make yourself sick for attention) because that was obviously what i had! they're just jealous cos i'm special!!

Hi peresphone, I only started getting chest pains a few months ago, i was coughing and then i just passed out, my chest was hurting that badly i asked someone to call an ambulance, my ecg like yours was normal but i was dizzy and in a lot of pain, the doctor at the hospital said that i'd pulled a muscle or that when i hit the floor i'd done some kind of muscular damage. i get chest pain quite a lot now though and i don't think it has anything to do with anxiety. wish i knew what it was though!

Hi Julie, i just wanted to say that i'm new to this site, but your story really touched me. i know just how you are feeling. i just wanted to say that things will get better for you. i know it's a long hard struggle to find a doctor who will listen to you, take you seriously and fit all of the pieces of the huge puzzle that seems to be POTS together to find some kind of treatment that will work for you, and i hope you get there soon. I was sent to see a psycologist last year after a diabetic specialist in the hospital told me that fainting is what "silly young girls do". i'm glad i didn't listen though, i carried on fighting, sometimes it felt like fighting the doctors was harder and more tiring than fighting the illness. Sorry that was a bit of an essay, just remeber that there are lots of people here to give you love and support and who know what you are going through so you aren't alone. becky x x x

Hi my name's Becky i'm 23 i was diagnosed with vasovagal syncope and POTS a week before my 23rd birthday. I live in North Wales. My worst symptoms, how many pages do i get? sounding similar to everyone else, high HR, low BP, dizziness, vertigo(?), palpitations, bowel problems, sweating, chest pain, shakiness, Can't seem to eat carbohydrates anymore!, anxiety and depression. on good days i only notice my fast heart beat and i'm a bit dippy, keep doing stupid things like putting my hand in the oven! I'm on Florinef and paroxetine, which seem to be ok, although i have really horrid side effects from the florinef, Lactating being one of them, but i keep being told to get on with it, my GP doesn't even know what pots is!!

Oh my God, i have a lot of trouble getting up in the mornings, but not every day. I'm not having a good day today, was supposed to be up and at college at 7 slept through my alarm and didn't get up til after one this afternoon, went back to bed at about three and got up agin at five. i'm just so tired i feel like i've run a marathon!

Hi, I'm new and i'm finding it amazing how many of the same symptoms i have to everyone else, this is the first time i've felt normal in ages! Anyway, what i wanted to say was that last month i had severe stomach pains and diarreoha (sorry my spelling is rubbish!) coupled with constipation a few hours later, i was like this for a week before i called the doctors. One doctor told me to go to hospital immediately and the other said wait til the morning (it was one in the morning) anyway i waited saw the doctor the next day and was diagnosed with irritable bowel syndrome, anyone else have this? thanks.