willows

Thanks ever so ....................willows.

I hate to say this Julie but he probably can see his jaw bone as I could see mine before they cut back the gums and broke the bone back so they could sew the huge holes up I had in my gums............not nice at all , it took me daily treatment from the hospital for 6-7 weeks until I was able to eat properly so you tell Mack I'm thinking of him and to rest as much as he can to get his strength back from what I felt was just the most awful ordeal . Strange isn't it that Mack had this dry socket and so did I ,I wonder if POTS ( or related illness from this ) means that we all end up with problems based around things which so called 'norms' (people without Pots) dont get , I was told that it was 1 in a million people who get this dry socket and then gums that receded exposing the jaw bones. Anyhow, Mikes been very unwell today , he looks like death warmed up , so yellow and pale at the same time !!! He hasn't even got out of bed today he's felt so ill and this for Mike is just unheard of . Today he's got a 17 birthday bash to go to , but I feel that my son will not be going or if he does I'll be collecting him about 2-3 hours later from A * E because he's 'hit the floor' I'm hoping that he will listen to me about this and say put here . So if you read my jaw diagnosis you will now know that whilst Mikes having his teeth extracted I'll be at the maxillofacial surgeon having metal plates put into my face to bring it back together ...........what a start to 2009 , I do hope it improves a bit ...........possibly a lotto win would be nice after all our surgeries so we could go on an extra long holiday , well we can dream cant we . Love to mack and all Ami .xxxxxxxx

Today 2nd January 2009 is a day to remember for at 9:30 am I was diagnosed after 12 whole years of the most awful pain I've had to put up with , when it could have been cured 12 years ago ............but someone messed up ...........or should I say a number of men messed up , doctors that is . I never had any problems with face pain until I had the first car crash in February 1997 in which my son , huge puppy and I were hit from the front /side by a lady who was coming out of a private school as we were passing it , I was the only one injured and away with a neck injury , a broken wrist and broken ribs , but I had also hit the right side of my face very hard against the drivers window causeing massive bruising to this side and pain , no x-rays , scans or MRI touched this part of my body and it was just left to heal as the so-called A & E doctors said ' its juts bruised '..................WRONG ( number 1 mistake) The second car crash was in September 1997 this time I had to be cut out of my car as I had been hit by a land cruiser with bull bars on from behind ( I was waiting to come out at a roundabout ) the car that hit me was doing 50+ miles an hour and I didnt stand a chance, I had back and neck injures and once again I struck my head /right side of my face on the door frame , nothing was ever done about this as the bruising and slight swelling would subside I was told with confidence ..........WRONG ( number 2 mistake) The third incident was almost at the end of September 1997 , if you have read my story you will understand what I mean by , my ex-husbands inability to terminate me . I came down 17 wooden stairs into a plate glass mirror and sustained neck, back and arm injuries in an attempt to not hit the mirror face on which would have surely smashed it in my face and left me with horrendous facial disfigurements I turned my head and put my hands up to shield myself. I manged to get away with it but had bruising once again to the right side of my face and head and for the third time I was told I was fine ( facial wise) and nothing was ever done about looking at it or checking it .............WRONG ( number 3 mistake) So from late September 1997 I've had pain in the right side of my face , it started as a headache.........then my ear started to run like I had water running out of it ( intermittent times) ..........then I started to get earaches on and off , on and off for days then weeks at a time......then my nose would get a 'headache' !!!!! ............then my jaw........then teeth.......then my neck and finally the whole of the right side of my face was involved ( took almost 12 years to get this far). My hearing has stared to be effected and I'm now talking loudly at my boys ( intermittently again ) , but its the pain that is the worst and its so bad now that on Christmas day I was sick with it and had to open my presents with a bucket beside me ( not my best of years so far then ) The pain has now been constant since Christmas day and I've been getting worried that its not just POTS , I've been thinking its possibly one of my lumps growing inside this time or something even more sinister . Today 2nd January I went to see a ENT specialist AGAIN . I've seen at least 7-8 over the past 12 years and all have just said 'it will pass' ............( wrong ) 'its nothing to worry about' .( wrong ) .............its possibly migraine' ( wrong ) in fact I've had so many things aid to me about what it is or what they think it is I could write a book about face pain . So....................would you like to know what it is ?????? Would you like to know what I have to have down ????????? And would you like to know how on earth something like this could possibly be passed over, missed or just brushed aside by the so called 'experts' ????? I've come to the conclusion that doctors DO NOT LISTEN TO ME ...........because if they had this awful thing ( what? what ?) would have been picked up 12 years ago and I would not have been like I am today. It took a woman to diagnose a woman and I think the reason why she picked up on it so fast was because she LISTENED to me , didnt interrupt me and asked questions that no one had ever asked before and when she did a certain test on me ...............er , well all I can say is that half of the staff of the ENT department came rushing into the room I was in as I screamed so loudly they must have thought I was being murdered ( couldnt stop myself unfortunately ) So ...........guess what ?????? I HAVE BEEN WALKING AROUND ALL THESE YEARS WITH A BROKEN JAW BONE . The reason its not healed is because she thinks I've broken it more than once and now all the cartilage and muscles that are surrounding it have grown out of place or have gone. The test the doctor did was to put her finger in my mouth and press ( on the left side first ) the bone which is right at the back of your teeth facing downwards, of course I felt nothing , just pressure. She then said I'm going to do the same on the other side ' Please whatever happens dont bite me ' this I thought was a silly thing to say as why should I want to do that ???? when she pressed the bone .............OMG I screamed with the most awful pain I've ever felt in my life and nearly passed out , feeling sick and dizzy afterwards. She also pressed a place in line with my ear but about two finger with this out and once again I wanted to be sick . So , I've taken the form straight down to the MRI section who are calling me as soon as they can get me in and I'm being sent to a facial surgeon to have my jaw bone sorted out ..............I just cannot believe it 12 whole years of this awful pain because the male doctors that I've seen just couldnt be bothered to listen to me . Totally and utterly outrageous behavior by the NHS and all the doctors concerned who have made my life and my families utter H*** over these years as my pain effects my families ( as we are all aware) Ami .

Thank for your replies all and I do hope Mack is feeling a bit better now Julie , please send on Mike and my warmest wishes to him and lets hope he can start to feel a lot better now the teeth are out . Its almost 2 am here and poor old Mikes sitting in bed on his lap top feeling awful , he's so tired but if he lays down and rolls onto his sides he sets of the pain even more so sitting up helps in away. Earlier today we had 2 of his best mates around for new years lunch and poor old Mike was eating so slowly it was so sad to see him , he normally loves my cooking and I'd made a huge 4 kilo gammon ham with caramelized fresh pineapple and all the veggies I could squeeze onto a plate for everyone ( and a lovely raspberry cheesecake for dessert) but Mike just could chew ............and No he refuses to eat soups, milkshakes and all other soft and drinkable things , he's a man you see......... and real men dont eat soup just because they have pain ( nope, they suffer and struggle and dose themselves up with painkillers so they keep falling asleep at the dinner table ..........oh, now that real enough) I'm calling the dentist today at around 10 am to find out whats going on and if I discover that its 'not a lot' then I am of a mind to wait until around 7 pm this evening when Mikes at his worst then just drive him up to A & E , the lump on top of the right sided wisdom is now even bigger and it keeps bleeding so before long he'll get an infection at this rate and then be even worse than he is as he cannot fight a feather let alone big bugs right now. Come to think about it I will call our Doctor as soon as the surgery opens and take him to see her , I'm sure she will call the hospital and sort something out if I know her as she hates to think of Mike and I suffering just because people dont understand what our condition is like and how it effects our bodies. Mikes really having a bad time of it right now as the pain keeps rising to 8 -10 and if this carries on he'll need more than the painkillers he's on , which is very worrying . I'll let you know what happens later on today ......Ami.

Cont: ' The adventures of Gilbert the magical mystery lump' Are we all sitting comfortably ................and so after having a letter to go to the hospital for a scan , Gilbert accompanied by his mistress ami ( he doesn't like going anywhere on his own as he's so shy) managed to get to the hospital on time to see the doctor. Gilbert was not in a good mood that day and didn't like the scan doctor so tried to hide from him by collecting tons of water in buckets to place all around him so he couldnt be seen properly ( oh , clever that one Gilbert ). But the doctor was cleverer than Gilbert and he was seen trying to avoid having his photo taken by the head of radiography , who seeing what Gilbert had done to the outside pf his poor mistresses arm was not going to let Gilbert get away with his silly behaviour any longer . After 4-5 minutes of scanning the head of the department announced 'er , hang on a mo , I'll just get my boss' and off he went off into the many tunnels and walkways know as 'the hospital' So, Gilbert now had two radiographers, a nursing assistant plus a trainee radiographer , plus this new man in the room all poking and prodding him , which I'm afraid Gilbert did not like ( nor me come to think of it ) After yet another 10-15 minutes of scanning from all directions and taking photos then having a whispering session between them , they all announced: ' There's something there, its quiet large and its entwined around a nerve and a muscle ' Oh, dear ............. well I could have told them that without all the electrical stuff and the poking and prodding and I haven't got a qualification in medicine ............men ! So Gilbert and Ami were then sent on there way so that the relevant information could be placed in front of the big man ( the one who happens to be around 6 inches shorter than myself , if thats possible ) for he is the one who has to now sort Gilbert out . Today I received a letter from the 'big man' which simply reads ' the scan was inconclusive and we need to do more tests' .............well am I surprised by this statement ................NO , the only thing that surprises me is that it took a whole afternoon of my time and effort , ?15 in petrol , 5 people and all that tecknowledgey to tell me what I already knew, what I need to know if possible is ' what or who is Gilbert' ??????????????? and what are his intentions towards me , I do hope they are honourable ! As soon as the big man ( shorty, at the hospital ) can fit me in I'm off to have more pocking , prodding and possibly a nice thin needle shoved into Gilberts head ...........well that will serve him right for keeping me up at night . More adventures from Gilbert and his long suffering mistress Ami soon

With 2009 just under 24 hours away my husband has come up with a new and even more exciting game to play , just to keep my son and I amused ! His right foot, which is attached to his right knee which is attached ...........yes , we all know the song . With his right foot braced and still playing up its having rather an impact on his right knee, he's already got hip problems on this side from having skin, muscle and nerves taken from this when they sorted out his right hand ( here , somethings definitely wrong with this line of talk as its all right sided ) anyhow a few years ago he fell whilst walking and his right knee ( along with its foot and his body attached of course, as a knee can't just go off on its own !) well clever clogs fell into a craves whilst walking in the mountains and his knee went the other way ...............in other words the hinge bit instead of closing backwards ......went forwards . OMG not nice to see ( or hear I should think ) Hubby being 'Mr tough guy' refused an air ambulance and believe it or not pushed his knee back in place ( yes, makes you shudder doesn't it ) and WALKED DOWN THE MOUNTAIN ( silly , stupid, pig headed person that he is ) anyhow it was sorted and he refused an operation on it and he's been having problems since then on and off. So...........his new game goes like this : Walk around the bed to get a pair of sox's or whatever from the cabinet and suddenly without warning he lets out a half scream ( rather like a man with turrets syndrome ) and a sort of strangles sound something like you'd get if you grabbed a cat by its tail hard .................and then he disappears ...........er GONE........ This happens on a number of very embarrassing occasions ( which I find exceedingly funny , well I do have a wicked sense of humour which is why he married me , so I'm aloud to laugh) One such occasion was in our tiny village , most disconcerting if you happen to be near him as he suddenly descends to the ground and rolls around by your feet , I think one old lady thought he was a pervert trying to look up her skirt and sort of took a swipe at him with her hand bag before she realised it was Mark and he was holding his knee saying 'nice , sweet , kind and loving words about it ' ( oh , yer and I'm a monkeys uncle) Another time he was in the local Co-oP by the bread counter when he happened to disappeared , which had customers peering around by the eggs wondering if by any chance an electric current had been 'hooked up ' to the counters 'just for a laugh ' to see what customers would do if they touched it ????? But the best for me is when he does it in the front garden ( we have a number of trees, shrubs and bushes ) when he suddenly disappears only to 'pop up' about 5 minutes later like some demented 'jack in the box' covered in leaves and with bits of twigs in his hair ( what hair?) and I live in great hope that he might at some point just fall down slightly to the 'right side of the path' straight into the pond and make a really good event of it ( I'd be out there with a vidoe camera in 2 seconds ) I did put this all down to his age ( mid to late 50's) or possibly his hormones , as it couldnt be the 7 year itch ( we've been married 7 years now ) because boy oh, boy I've never in my life seen an itch affect a man like this before. Happy new year all , think of me with my 'jack-in-the-box' husband over the coming days bringing me my morning coffee.........empty cup.............orange juice ...........empty glass . But most of all think of tonight as he brings me that special glass of champagne at midnight to celebrate the coming of 2009 and another wondrous , eventful, interesting and somewhat tearful( stop laughing will you ) new year ..............oooooooooooops cloth dear !!!!!!!! Ami xxxxxxxxxx

My son ,Mike has been complaining of pain in his face for a couple of days now and then last night he started saying his teeth hurt so here I go again I thought 'like mother , like son ' as I get the most horrendous facial pain etc, but not so ............well almost ........not so 10 Years ago now I had to have 2 wisdom teeth removed as they had become impacted and when the hospital dentist took them out ( it took 1+1/2 hours to remove the things ) instead of the gums bleeding them closing over , mine as you would expect by now with my so called 'luck' well they did the exact opposite My gums just went silly and receded back making the holes bigger and then my jaw bone sort of fell through the hole , pain ..............pain and even more pain . I had daily treatment for 6 weeks in an effort to stop the pain and the holes getting bigger , lost over 2 stone in weight and in the end they couldnt stop the bones from comming thorough and I had to have my gums opened up and part of my jaw bone cut away ,they then stitch the whole lot up , it was painful beyond belief and I was awake the whole time ..........not one of my better experciences. So, Mike starts to get pain in the jaw and mum here gets her torch and what do I see .............OMG a huge swelling at the back of his lower tooth line and I do mean huge!!!!!!!!!! Called our dentist today and Mike was seen immediately , X-rays taken and standing looking at the full mouth x-ray was shocking ...............his two upper wisdom teeth are there and are starting to descend correctly , but his two lower ones are sideways on the root of the tooth points towards his throat and the crown ( top) of both of his bottom wisdom's are lodged against the side of his lower front teeth ......solid . When the dentist first saw the x-rays he said dont worry there is every chance they may move around , then he looked again......... closely..........and said 'may be NOT' errrrrrrrrr, right ...........er , sorry Mike but I dont think you stand a chance of having those teeth move , other then pushing your normal front teeth out of place ' I'm about to fill in all the medical history because Mikes off to hospital as soon as we can arrange it with a consultant dentist ( hopefully in the next week or so ) as he's got to go into hospital and have both of the lower sideways on wisdom's out under general anesthetic ( which should be great fun for us all again ...............not ) At this time Mikes in some pain as the skin over one of the teeth is so swollen its the size of a large broad bean and everytime he bites on something he's eating himself as well so he's not wanting to eat , which in turn is effecting his medication which in turn is effecting his pain , headaches, dizziness ..................... well what can I say ? Hello 2009 and welcome to a brand new 'lets see what else we can inflict on the 3 people in Deepest Darkest Devon year ' Happy new year to you all Ami , Mark and Mike.xxxxxxxxxxx P.S. Mark my 'I can do anything husband ' has a new and exciting game to play its called ' lets fall down when ones right knee gives out disappearing behind settees, trees, chairs, beds and anything thats large enough to cover you , whilst letting out a high pitched sort of half scream......half sound of a strangled cat ' and then when people find you rolling around on the ground , well you just smile sweetly and say 'what ?' everything OK dear ?' oh, yes indeed dear , this is a funny game .............NOT ? Question : Will my boys ever learn ?????? Answers below or suggestions as what to do to keep them both from harm ??? straight jackets perhaps?????

Thanks your your messages. Well, I almost got through christmas ................after opening my presents with a plastic bucket beside me and then at around 2 pm in the afternoon being sent to bed as I couldnt stay awake, was white as a sheet and in some considerable pain .....boxing day arrived and went without me taking part in it at all and then the next day arrived with me in so much pain I didnt know what to do with myself again , so hence the local doctor was called . I've had a constant headache in the right side of my face ....ear, nose, all my teeth and the rest of my face for 10 days solid and its got so bad that all I want to do is be sick , no pain killers seem to touch it and I'm having hearing loss as well . I'm having my hearing checked on the 2nd Januaray2009 ( few days time ) but whats more important is that I'm also being checked for Addison's disease as they have just discovered that I have huge brown skin discolourations under each arm and at the base of my spine as well as small patches of pure white skin that has lost its colour on my face ...........well you know what they say ' it never rains but it pours' This christmas for me was absolutley astounding as my husband had been for around 6 months saying that he had no spare cash ???????????? I was beginning to think he was up to something strange ?????? And on christmas day I discovered what his money had all gone on .........ME .....OMG my crazy husband had only gone and bought just about everything I'd put on my wish list and if you'd have seen my wish list you'd have thought he had well and truly lost the plot In all my married years I have never really asked for much at christmas , I've always been content to watch as my son and my husband open the gifts and enjoy seeing thier faces when they see how I've been able to keep such surprises from them .....but this year the table was turned . I wont tell you what I got , but lets say this , if I never get another gift of either of them my whole life I'll still have had the best Christmases , birthdays, anniversaries , Easter , mothers day , and every other day you can think of .........ever. I should be cross because spending so much money on me does make me feel so guilty , but all they both kept saying was that I do so much for them and the people around me that it was time the balance was made equal, so I have just got to except that for them its the same as what I've been doing for years ....watching thier faces and seeing the total utter shock at what I've bought them ..............well they really succeeded with me big time !!!!!!!! ALSO...............I called Corina after my opening of presents and emptying my bucket ( in that order ) and she was feeling quite good, her sons where just cooking breakfast and she was enjoying the morning with them both . I did manage to get a parcel to her and the boys earlier this month and was pleased that it had arrived and she was able to open it on christmas eve , since then I've discovered that Corina's favourite colour is pink ............and I've just bought her without knowing this , a pink hat to keep the cold of her head come the very bad weather , so hopefully this will be winging its way to you soon as well . Well , all I can say now is 'Happy New Year to you all ' , may you have a great new years eve and be on your feet upright afterwards , without any form of hangover . Bye for now Ami , Mark and Mike xxxxxxxxxxx

Sorry I haven't been around much over the past few weeks but Mike ( my son ) and I are having a bit of a bad time just lately , in fact last week was our all time high as far as having attacks was concerned. On Tuesday I had an attack most of the day , but felt fine by Wednesday morning ( or so I thought) so I went into town and did some christmas shopping at a very good store, the queue was very long ..........to long and by the time I had reached the half way mark I was starting to feel a bit 'funny' OMG with nothing to hang on to except my fellow people in the queue I was looking around frantically for help when the lady beside me must have seem I was having problems because the next thing I knew was she was shouting at the staff at the cash desk to get help ...............ooooooooooooops 'the floor came up to visit me ' So, after being picked up , brushed down and parked at the nearest coffee shop ( about 10 years from the shops door) I was given strong coffee and two security guards to sit with me until Mike and his mate had escaped from college to come and collect me from my enforced escorts the security guards were adamant that I was not leaving there sides until my son had arrived , which was fine by me , but oh , boy did the local shoppers stare ) The out come of my escapade in the store is that now if I go to do shopping in the store I can have a personal shopper every time and I can get my goods taken from me and cashed up in front of all my fellow shoppers whilst I sit down by the cash desk on a chair .............well I dont think they want the whole of the store brought to a standstill again some how ! So after managing to get home in one piece I was sitting feeling extremely tired on the settee watching some silly kids program , minding my own business ............bang ..........my heart kicked in or should I say kicked out again and once again I was confined to bed with a mountain of drugs and strict instructions to lay still , rest and forget everything and anything that needed to be done .............some hope with just a few days to go before christmas. Thursday arrived and I got up very gingerly at around midday , feeling fine I did a little bit here and there and nothing , heart fine, sweats fine , head fine ......fine all over At around 6:30 pm I said to Mike lets go and go some of the shopping I've been trying to do all week and have failed to do , so off we both went , both feeling absolutley FINE Went to Morrisons a huge supermarket and had around 25 items to get on my christmas food shop list , got all these and made my way to the checkout when Mike out of the blue said ' I feel funny'................O........................M....................G he looked really red and his eyes sort of kept dipping upwards . panic stations here !!!!!!!!!!!! Alarm bells ringing in my head now as I grabbed the nearest shop assistant and got her to pull Mike over to a large chair by the window , go for a first aider and then get some OJ which she had a sachet of medication to mix into for him . So Mike was sitting down with now three shop people around him and I was standing at the checkouts trying to sort my groceries into bags.............when..................a little voice in front of me said ' excuse me , but are you OK , you've just gone really white and your lips are all blue in colour , do you need a chair ?' YES, I'd kicked off as well and as the last words left her lips I started to feel my world falling around me ............OMG . So , 10 minutes later and you could hear the two ambulance sirens from a distance as they came hurtling towards Morrisons , I was taken to one with two paramedics and Mike was taken to the other with two as well , his blood pressure has in the heavens and mine in my boots, 3/4 hour later and having explained that we just needed medication ( which I always carry now ) and we where at last given the OK to go as long as I felt safe and felt I was not going to 'kick off again' Since then I've had another attack and so has Mike , it appears if we are together that one sets the other one off , now I know families like to share but this is taking it a bit to far dont you think . Another little problem that has arisen since I last came on is that I'm now going to be tested for other conditions including Addison's disease , I have Palm creases that I've shown so many doctors for years and until now no one has taken any notice of me , but my new POTS man did , as well as all the dark brown pigmentation's in the creases of my body , at the base of my spine and tons under my arm pits of all places. I also have some strange goings in to do with my glucose tolerance , as we have diabetes in the family this doesn't surprise me one bit . This new man , who at the time I thought was a waste of space has picked up more than another doctor has ever done in just one 30 minute visit , so maybe I did judge him a bit fast . With so much going on and so many attacks over the past few days it seems that this christmas is going to be an interesting one of nothing else. Oh, yes, Mark caught the bug that has been going around the UK for weeks and was so ill , if he wasn't locked in the bathroom every 10 minutes wishing he'd never eaten shouting out 'dont even say the word food ever again' then he was on his knees with his head down the loo shouting other words ( not to be repearted) luckily Mike and I kept out of his way for 72 hours , mainly in my big bedroom watching sky, on our computers or watching DvDs in between one or the other of us falling asleep or at time both of us out sound !!!!! I may not be able to get back to you again before christmas as the tiredness I have at this time is just overwhelming and I'm really having problems just staying awake for about 4-5 hours a day , not the best of months for either Mike or me . So, to all my friends and to everyone past , present and all you new members of the pots community may I wish you and your family a very happy christmas and a pots free one if possible. I hope you all get what you have asked father christmas for and that 2009 will be a year of less pain , less passing out , more days of fun and laughter and above all ................tons of love to you all. Amelia, Mark and Mike in Plymouth Devon UK Happy christmas each and everyone of you .

I to have a mitral valve prolapse as well as an aortic valve prolapse but nothings been done about either of them. I've had the mitral leak since I was around mid 20's and I also leak from a hole in the back of my heart which they found by going down my throat with an endoscope and having a look at my heart from the inside out ....most strange . I'm not tacky I'm bracky which is strange as most of you have very fast heart rates , ye me I'm the opposite . Ami and her leaky sqeaky heart .xxxxxxxxxxx

I have three grown up children , two girls and a boy . My eldest daughter ( mid to late 30's now) was fit and well all her childhood and only when she reached her late teens did she start passing out and having terrible headaches and sight problems , but as far as I know hasn't been tested or wants to be tested for POTS , which is her decision ...........when I had her I was fairly well and in remission of POTS My middle daughter (mid 20's now) has been fit and well all her life with no medical problems at all . .........when I had her I was still fairly well ,although I did loose a total of 3 other babies before I managed to have my second child My son Mike (18 in March 2009) has been ill since he was 4 years old , some illnesses have been so bad that doctors just cannot believe that a lad of his years would pick conditions up such as some of them including : Bleeding from both kidneys at 4 years old, Tested for TB at 6 years old, Very bad glandular fever at 9 years old, double Pneumonia which lasted for months at 12 years old .............when I had Mike I was having full blown attacks day in day out and was very unwell all through the pregnancy ( pre-eclampsia) and then exceedingly unwell afterwards ( post toxemia) Mike was my last child as soon afterwards I had to have a complete hysterectomy , in all I had 7 pregnancies (2 sets of twins ) but managed to keep alive just 3 children , a girl from the first set of twins, a girl from the second set of twins and then my Mike . But remember , this is me and I've never met anyone else with POTS who has had such problems with pregnancies, birth or passing POTS on to thier children. Ami xxxxxxxxxxx

Hello . I dont know about anyone else who has POTS but as far as I can see , feel and am aware in my own case its not just progressive but degenerative , each year I get slightly more problems and things get worse in all cases. I did have a sort of remission in the past , but that was when I was in my mid 20's , but since I was around 30-35 years old its just been down hill slowly and steadily , it could be just the way my body responds to POTS and all the conditions that are linked in one way or another to it, so dont think that what has happened to me will happen to you because we are all different and respond to illness in so many ways. Take for instance a common cold , some of us can just shrug a cold of and yet others can suffer for weeks with it feeling simply terrible , its all a matter of how your own body handles things along with your own personal outlook on life and how you tackle things like illness , I'm convinced that if you can stay strong and positive about your illness and how it effects you then in some ways you can hold back certain things and stay mobile. Mind over matter comes to mind , but then I dont know about you but when my pain level gets OTT bad along with sheer uncontrollable fatigue , well my mind gives in and nothing matters except strong pain killers a warm bed and a fluffy pair of PJ's to curl up in. Ami XXXXXXXXXXX

Having taken Mike to the doctors to be signed back to college today after two weeks of rest , he now seems more 'Mike again'. I was very worried as he took his diagnosis very badly and was so tearful , but thinking about it now I suppose if I was just coming up to 18 years old and had my whole life in front of me , then I started falling down , have a couple of beers and out of the blue go like some sort of mad depressed lunatic with no control over my body and feel like I'd run a marathon every day ...............well I'd want to bawl my eyes out to But today he really is back to his crazy ( like mother , like son ) self , so off we went to do some shopping and get a cup of coffee before hand ..............as Mike stared to sprinkle lashings of salt onto some breakfast he had one of the waitresses came over and started to talk to us saying how much salt Mike had put on things . I could see she was interested as we nattered away together and she was sort of asking me in a clever way about the condition ? so I told her that we both had this rare and somewhat strange condition ................off she went and came back with a piece of paper and handing it ot me said 'is it this' yep.............her 21 year old son has been merrily falling down at work , has the horrendous leg pains we both get along with the indescribably painful bowel contractions I've given his mum the lead to this web site and told her to come to the forums for support and help , I've also given her the Torbay doctors name ( well I think I did ??? ) so hopefully we will have another lad for Mike to natter to about being in the UK , at the prime of your life and stuck with POTS. But this isn't all , whilst at the doctors he let slip that there is yet another 18-19 old lad in the immediate area in which we live ( 30 mile radius from us ) so now that 3 lads in their late teens+ early twenties who have pots............ OMG what on earth is happening to the Devon area something in the water ??? or just sheer bad luck . My idea now is to form the very first 'POTS Lads Group ' ( PLG) here in the village and get all three together to be able to talk about what its like , ask questions and just generally support each other , 3 lads of almost the same age is just unbelievable in such a small isolated area as ours, but then if this getting together works they will all be a great help and comfort to each other , because as we all know being able to talk to others like yourself in age, lifestyle, gender etc .............and actually having someone who knows what its like to have such strange things happening to you , well its like having a big fluffy blanket around you on a freezing day ..............you feel safe because your not alone anymore. I'll let you know when I've found both of them and when I can get them together ............another lads night of nibbles, drinks and XBOX tournaments on the horizon I fear Ami xxxxxxxxxxx

Hello icthus, Thanks for the post about retesting , it really does make me cross because as you clearly say , some days we can look and almost feel 'human ' although these are getting rarer and rarer for me now , but other days I dont know about you but I'm lucky if I can get out of bed , walk or hold a 'normal conversation ' with the family . And to crown it all now I'm having to be tested for my hearing as both my men here keep telling me I'm shouting at them all the while now ooooooooooops how strange as it sounds the right level to me ????? But as for all this testing after going to a new consultant , its just plain lunacy , by the time I actually get to my consultant at Torbay from the borders of Devon and Cornwall I've been travelling around an hour or more so I'm feeling car sick, head-achy and just plain 'yucky' then trying to hold a what I'd call normal conversation with anyone after this , well its just crazy . Tell me , when you go to see a new consultant does he 'she actually believe you ???? What I mean to say is , that even thought you have letters and print outs from other consultants and may possibly have had POTS for some years ( as tested by a TTT which came up positive 1st time ) does your new consultant actually listen to you or like mine ....................( sounds of me trying not to beat my head against a brick wall ) try and make out that what you are saying isn't correct ............very unlikely because its so rare and of course the old one ...............I'm the doctor here and I'll tell you if you have a condition or not , not the other way around ..thank you I sometimes think that because of who I am I'm looked on differently ( for those of you who know what I;m talking about ) I've never pushed this ' upper class thing' at doctors in fact I've done the opposite and always tell people to call me just Ami and nothing else, but its as if this new consultant is out to prove that I dont have POTS ................er, whats wrong with all these new doctors who are churned out of med school have thy no ability to read other more senior consultation notes/letters/findings and reports . I dont know about you icthus, but I find this whole re-testing thing a load of old rubbish , do cancer patients get re-tested just in case its disappeared over night ???????? Do patients with kidney failure get re-tested ???? Its almost like asking my husband to come into a hospital to have his arm checked just in case his hand had grown back on and yes ................he did have to go in to a UK hospital to see a consultant to have his arm measured to make sure that it hadn't grown back !!!! and NO I'm not kidding ( all to do with an insurance pay out at the time ) So if this is the mentality of the UK medical profession ................OMG....................what hope have my son and I got at really getting help with new medications etc............we might as well go on seeing our local Gp's and check out all the drugs/equipment etc that is used by you all on this site ...................which by the way is what I have been doing since I joined the POTS PLACE way back , and I tell you what, I've had more help from all you wonderful people on here than all the doctors/consultants/specialists I've ever seen in 40 years..............so coming on here and speaking to all you really does help and POTS PLACE does work . Ami .................willows XXXXXXX

And another part of the ...................never ending story ( wounder if I should make it into a movie ) Mark had to make an appointment to see the foot man again because he needed new braces for his foot , weeks went by and nothing came in the post as promised for a new fitting .........calls made to the hospital ..............no response , time and time again he's called and they , the people in the appointments centre have 'crossed thier hearts etc, etc ' that an appointment is in the post ....................well all I can say is their noses must be so long by now they are falling over them and I hope it hurts! And today what is this on the horizon ...............an appointment for the fitting of a new brace ....................cheers all around until........................ its on the same day that my 'Gilbert ' is having his photo taken at Torbay hospital some 30 miles away from Derriford hospital and as we all know 'you can't be in two places at the same time' oooooooooh, dear I will not repeat the words that came fourth from the lips of my 'angelic husband' but they where on the lines of : ** !! ^^^ *** "" !! ** &&&%%$ ............and more Needless to say the poor man now has to wander around with a brace on that is no longer giving support and he's doing what I can only describe as a cross between the 'light fantastic ' , ' Hockey -cocky ' and the I now infamous' who moved the stairs again' oh , how I love Christmas and the clutter of the reindeer on the roof tops .................and the clatter of my husband falling top to bottom of the stairs ................ah , it will soon be snowing and what fun I'll have as I pick him up from ice laden-ed paths, slippery stairs and various other walk ways Merry Christmas all Ami

Thank you all for your replies. Flop , you are so lucky to have had such detailed testing in Queens square , as I said they really didnt care a bit about me when I was there and I was so ill after the TTT that I just heaved my whole stomach out all over the staff . I couldnt get one nurse to help me and as for getting my drugs , well it was ridiculous and my local doctor when I got home wrote to London and complained as even after 3 days I was still looking and feeling so unwell from the sheer neglect I had whilst under the care of the National Hospital. Cat Lady, in the begining when I was just 13 years old I was looked on as some sort of silly girl who was attention seeking by my local hospital and doctors , it wasn't until my legs started to give way and I kept falling down swaetting with chest pains that the doctors actually felt something was wrong with me , but before than I was sent to see a psychiatrist who (thank goodness it was a very nice lady) told the consultants that I was ill and that she could see by just spending time talking to me how my whole body changed at times and how my blood pressure kept playing games ( up & down ). I tried to work in my late teens but spent so much time off work I had to give up in the end at the grand old age of 17 years old as the leg pain, headaches, fatigue and just plain falling down got the better of me , but I did do a degree partly by post and partly by going to night school in my mid tweenties from a wheelchair as some of you are now in ( two years wheelchair bound) I did have children , I had 7 pregnancies in all with three sets of twins , but only one of two sets of twins survived and only one other baby , Ali my eldest daughter , Emily my middle daughter and Mike my son , I had the most awful time with all three and nearly died with two of them , but I just wanted children and would go through this all again if I had to in order to be a mum , being a mum was the best thing thats ever happened to me and I thank god for every minute of every day I have with Mike my wonderful (almost ) 18 year old son . The doctors now think that I inherited POTS probably from my late father , unfortunately I didnt know him that well as we had been kept apart for nearly all my life by my mother , but I did get to share the last 4 years of his life and came to understand that he had major health problems with blood pressure, heart problems, pain etc ..............most of what I have now. With Mike having just been diagnosed with POTS I do wonder if my two daughters have it and have left messages for them to get a TTT done as soon as they can as I seem to remember my eldest passing out a lot in the past , but then its up to them to sort it out , thats is they actually believe me or not , they like my ex husband seem to want to live in this dream of an ideal world ( dont we all ) and do not want to except that Mike or I are ill , a case of sticking thier heads in the sand and hoping it will all go away and things will be all nice and happy again ............some hope ! If I have one bit of advice to give to you all who have been diagnosed with POTS in the past year or less its this: Never give up trying to do that thing you've always wanted to do with your life .................it may take you longer , it may cost you pain , sleepless nights, worry and physical hardship , but in the end you will have proved to yourself and others around you .........that anything is possible. I was told I would never get a degree in a hundred years .............. I proved him wrong. I was told I would never be able to run a company of my own ....................proved them all wrong. I was told I would never be able to have a child , let alone two or three...................wrong , wrong and wrong again. I was told I would have to stay in a wheelchair for the rest of my life ................hello , I'm walking with sticks , but I'm walking .............wrong again mate! I was told that as a disabled person I should make the most of what I have and not wish for the things normal people have or can do as it was a waste of time dreaming of things that will just not happen .................. But I was not willing to sit around doing nothing for all my life and did do the things I wanted to do like : travelled around the world, sometimes on my own , had three children, run two companies, helped raise money for the sick , needy and poor people of this country , got a degree, fought off two attackers in London who left me with no memory for 4 months, , come though two horrendous car crashers , one in which I was cut out of the car and survived a maniac ex husband who wanted to finish me off .........................so who's' the poor disabled person and who's the poor normal person ..............If I can be strong , so can you. YOU are the one who can do anything you want with your life , being in pain , having terrible bouts of fatigue , headaches, falling down , sicking up over everyone and everything , loosing the ability to stand and walk is just a hiccup in your life..............YOU CAN DO ANYTHING YOU WANT and dont let anyone tell you differently .............I wasn't prepared to listen to the doctors who said the words 'YOU CANNOT' and at the age of 50++ I'm still tackling things I want to do , slowly and surely hitting them head on ..............and boy , oh, boy does the world know I'm here! I'm still writing my books ( three on the go at this time ) still painting , still doing floristry and arts and crafts , mostly mornings now as by 2pm I have to rest on the bed until 6 pm to re-boot my energy and stop those awful sweats I get 24/7 but it can be done if you really want to make something of your life , its a case of thinking hard just what you can do well ...........and then go for it . Kind regards to all Ami xxxxxxxxxxxxx . P.S. anything else you want to know just ask .

Hi Jump , sorry that your having such a bad time with the world at the minute but it does get better , then bad again , then better , then ................yes, you know up and down , down and up rather like a roller coaster its really just case of hanging on in there to wait for the good time again. I've had problems with family , friends and even strangers since I was in my teens , I've been called lazy, been called a waste of time, been asked how could I embarrass my family by behaving in such away just about everything under the sun . Even now there are people in my small village who think 'by the power of thought' they can 'heal me' as in their words quote: ' its just a virus that we all get DEAR (how I hate being called DEAR) and it will go in a few weeks time ....honestly , all you need to do is think positive thoughts and you'll be well again in no time' And of course I'm not well in this short amount of time they keep referring to, so I'm told that its my fault as I'm such a negative person and I should 'pull myself together and get well' Needless to say in our small village stuck out in the land of nowhere , when someone like this starts a stupid line of conversation and makes out that its you who dont want to get better and all you need to do is 'pull yourself together ' people with nothing else to do actually believe it !!!!!!!!! Jump , you know whats wrong with you ( like we all do ) and its shame on all those people who in there ignorance dont understand that POTS is a real condition and unfortunately like you in my youth I naively thought it will go away one day ............and it didnt . You have to be strong and try facing your family , friends and those who like to make out your just a lazy person with a cold straight in the eye statement ' I am unwell with a rare medical condition ( well it is in the UK and around Devon / Cornwall) if you cant except that I have limitations because of this , then your lack of understanding is your problem , not mine , so would you kindly keep your remarks to yourself unless you are offering me help ' Dont try to keep up with normal fit and healthy people because all you will do is make yourself worse (which you may have already found out) We pots people are special you know we have been singled out to be able to take life at a slower pace and to be able to see everything that is going on around us, hear every word that is spoken and take life at a pace that most normal people will only have then they are retired and to old to enjoy all these wonderful things . I watch the birds in the garden and drawer them , I listen to the school children chattering as they pass my house ( some very strange and interesting conversations !!!) and I enjoy every minute of my day when I am up and able to do things and everyday is special to me because like you have said ' what we all have isn't something outwardly disfiguring , totally and utterly disabling to the point we cannot breath, see , hear or think anymore and it isn't one of those awful conditions that can finish us off in a matter of months ................we do have a life and its a good one , you just have to sit back and think about all the wonderful things you can do , can see, can hear and ignore the things that are left ..........after all who wants to run a marathon ( to wet , cold and hard on the legs) who wants to sit in an office all day at the computer ( to mundane, to boring and not enough pay ! ) So on the days when my life is so bad and I have to lay in bed with the chronic pain , excessive tiredness and all the other nasties that Pot's brings to my door for me its a popcorn and Harry potter day , snuggling down with a big soft squishy teddy bear for company ( oooooooops secrets out now ) and drifting off in a hazy sleep of painkillers and Colin Firth from Pride & prejudice ...............ahhhhhhhhhhhhh , 'Another dance Mr Darcey , yes of course , just let me pull up my surgical stockings and take another pain killer ' Keep looking for the good and ignore the rest and one day your wake up and think , my life isn't as bad as I thought , in fact its pretty good Hey , if an old crony like me can do it .......anyone can Ami xxxxxxxxxxxxx

Blimey you've been through the mill As for sweating a lot , when I was working in 2000 I found that just going up and down the stairs at work would set me off and I couldnt exercise at all because I'd get utterly soaked like in a rain storm Now in 2008 I get soaked all the time if I go out shopping or just a short walk . I do mean soaked , it runs down my back , trickles down my legs and sometimes that I think I've wet myself The worst is when it runs of my face and people stare at me like 'whats wrong with her '???? I think I've actually been sweating none stop since 1998 mmmmmmmmm, I wonder how many gallons I've lost in 10 years of this constant ..........makes you think doesn't it ? I take clonidine twice a day to help me with this problem , sometimes it works 100% and other times , well I might as well of planted it in the garden , it all depends on how fast my POTS is running on the day . Ami xxxxxxxxxxxx

Now here's a question I'm interested in knowing the answers to . I've had POTS since I was about 13 years old , now in my 50's I've been tested 3 times : 1: When I was about 18 years old in London I had a TTT, but they didnt know what I had then just strange happenings on the machines. 2: In 2002 in Plymouth by a Doctor Battle , who after hearing all my strange happenings asked if he could test me TTT , when he came back into the ward afterwards you'd have thought he'd won the lotto !!! as he was almost dancing about with joy waving his paperwork around shouting ' I've cracked it , I've cracked it ......you've got pots , your TTT was positive' which given the fact I was so ill at the time must have been interesting . 3: Then I was seen in London again but having spent 3 days laying flat out with nothing to do I was then taken and given a TTT, and nothing happened I wasn't given the stuff Mike was given to make my heart beat slow down .............and (this is where I get cross) at the time I was on the highest does of Clonidine I've ever had to take for the sweats , yet the doctor placed an arm patch on me with pink sweat detector in it saying that if the TTT showed nothing my reaction to it will show up on the sweat test ..................ER excuse me Clonidine ?????? so I didnt sweat either ( this TTT lasted all of 25minutes) Having taken me back to my bed to await another test ( a scan this time ) within about 30 mins I was having an attack ............head pain , flu pain all over , dizzyness , vomitting all over everyone ..........including visitors for other patients in the ward who came to my aid as the nursing staff ignored me completly to the point that they wouldnt even give me my own drugs that I needed to help the attack When the porter came to take me for a scan I sicked on him ...........all the way to the scan room on the floor ..............in the reception of the scanner and then all the way back to my bed as the staff thought it was some sort of a joke so send me in such a state! So now here I am back at another new consultant and guess what ? He wants me to have yet another TTT and every single test like all bloods , scans, those painful nerve test etc again And I feel that after over almost 40 years of constant testsing for this , that and the other I've just about had enough of the pain and all the side effects that these tests bring with them . If this consulatnt cant except the letter from one doctor to another ( Doctor Battle ) and all his findings ,then why are we all sent to different consultants for testing in the first place ???? This new consultant seems to think that just because I've had a TTT test that has shown nothing ,I now dont have POTS ................ yet after reading all my parework on my medical problems he cleary stated to me that I do have pots May be its me who's being thick beacuse if he is saying I have POTS, but then ordering all the tests to show I have POTS doesnt make sense to me , why I am now being asked to go through all the tests again ...................Tell me ,do you have to have all the tests done again if you change consultants each and everytime ????? I dont know about you but I find that even if having a blood test doesnt give me probelms 'at the time' probably because I must have had in the region of 1000 or more by now , but give me a couple of hours and I'm suffering with flu syptoms , tired , giddy on my feet etc. Having yet another TTT test makes me worried as I will have to travel a good 2 hours to get to the hospital and then 2 hours back , if Mikes test is anything to go on ...............OMG he was so ill and just so awful afterwards . And finally , wait for this little gem the new consulatnt said .............he asked if anyone in my family had POTS , to which I replied 'yes, my son Mike ' .................'No 'he said' someone else , like mother or father as its passed down from them ' So my question to him was , if POTS is passed down from mother or father to child and we know Mike has it and I've already been tested once with full Autonomic Nreve Dysfuncation ............why ...oh ....why are you putting me through this **** and back again , when you know I have it becuase I've passed it on to Mike '??????? Quess what ?????...............he ignored me Mike on meeting this consultant for the first time took an instant dislike to him and I had to talk him round to going back ( this wednesday ) saying it may be just because he doesnt know how to talk to teenagers. But now it appears he doesnt know how to talk to anyone !!!! Mike said to me after the first meeting he came away feeling like this man felt he was lying to him and was making it all up even though his own doctor had sent many letters because she was so worried about him . And me , well I felt the same , I got the distinct impression that even though my husband Mark had come into the consultation room to 'back me up' on things when I've blacked out and cant tell him what I'm like then ............he didnt belive Mark either .............what on earth is wrong with doctors today are there so many people out there who are intent on makeing out that they are ill ( for **d knows what reason ) that doctors tar everyone that come into there consultation rooms as liars and cheats until they prove other wise. Sorry this has been such a long post but I'm angry , I've just had three-four days of feeling so unwell , unable to go out , sleeping none stop , sweatting like a boxer again and having the most awful digestion problems and every time I've been sick I've wished it was on my new consultants HEAD ! Ami xxxxxxxxxxxxxxxxxx P.S. and now my spell checker has done stupid , so excuse any silly spellings as it will not pick anything up .

Mikes not at all well at the minute , we had to take him to the doctors on Tuesday as he looked terrible and the doctor has given him 2 weeks of college with no college work allowed at all in this time , he's to rest when and as he wants to and if feeling up to it we can take him out to take off his mind of things ........... why your probably asking ???? Well read this , I was utterly horrified and so angry with one of his mates after I found out . Mike is in his second year at college having completed his first getting the highest award in his year a merit/distinction. This year he has been teamed up with an old school friend and another lad on the course so that when the bigger course projects can be split between three , making it a lot easier for the students .............well that was the idea , in practice it was different for Mike . Yes............the other two have done not one word at all in the last two joint assignments . It took me three hours of gentle persuasion to get the whole sad affair out of mike as he didnt want to get his 'so called mates' into trouble ! Apparently when the first assignment was handed out Mike started his 1/3 right away , about 4 days before the three of them where due to do the presentation , the first lad claimed he had lost his work on his computer and his mate said he had forgot to do his ................so Mike not wanting to fail sat down and finshed off all 3 sections in just 3 nights , on the day of the presentation he got the other two lads just 15minutes before they had to do the big talk in front of the whole class to read what he had written for them and they all got a 'merit pass 'for the brilliant work ............No re-word that for Mikes brilliant work. Once they discovered that Mike was such hard working student well that was it and they haven't lifted a finger to write a word since , leaving all the work to Mike to do or fail the piece of course work that had to be done. Not only this but they have been hounding him constantly about finishing the work via email and text and of course with the amount of work he's been doing and the pressure that he's been under as well as his pots playing up ............he just broke down . I went mad when I got on the phone to this mate , excuse after excuse he tried on me , saying Mike agreed to it all which was such a lie becuase this lad actually told me he had done all his work and was just waiting for mikes 1/3 . Then he tried the ' didnt understand the course ' then 'my mum and dad would be so angry ' if I fail the course, then how he'd lost the work sheet ...............yep I've had every excuse in the book for cheating .............yes, its cheating to sign a college work sheet with your name on when the work was done by another and you can be thrown out of college for it . But What really set my mind to going into the college and spilling the beans on both lads later that day asking for all the 'merit passes' that Mike has done for them both knocked of thier college progress reports and having them both redo the work on thier own was this : This so called good friend of Mikes , who was here from Friday night until Monday evening eating me out of house and home , was on the Internet , X-box . telephone to mates and smoking all the time Mike was working his guts out trying to finish the paperwork for Wednesday presentation !!!!!! And even worse: when I spoke to his mum to explain what had happened , his mum told me she was not very happy because her son was falling behind in his college work because he has had to look after Mike so much and so has not complete his own single work sheets Oh , dear was she mad with her son when I told her that Mike .............hasn't been ill at college ( I dont send him of he's at all unwell , yet he's still up to date with all college work ) and that the one time he was very unwell the head of the course took Mike out and stayed with him until we arrived and at no point has her son been asked to 'look after mike ' Apparently this lad has been getting on the bus for college ..........yet having arrived in Plymouth has not going into college but wandering around Plymouth all day from 8 am until 6 pm going home telling his parents that Mikes been ill and he's had to look after him so he's been unable to do written work !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well, its as I always say , you get found out in the end and these two lads are no friends of Mike if they feel that they can do such a thing to a lad who's so unwell , struggling with pain and dizziness 75 % of the time and then outright lie about him ..............friends like this are not needed . Mike and I are going to have a mum and son cooking day today (probable ending up flicking jam or flour at each other) making all sorts of nice christmas things in the process( as well as redecorating the kitchen with pastry scrapes, jam hand prints and flour foot prints all over the house ) I think I'd brush myself down with melted butter , roll in flour and stick hundreds and thousands all over myself if that was what it takes to make mike smile again Hopefully a couple of weeks doing all sorts of silly things like this will bring Mike back to his normal crazy self that he is and stop this awful feeling he has and the tearful session he seems to be stuck in at this time . At least the head of the course is 100% behind me on this matter and he was quite worried about Mike being so down and unwell ( he's very tearful, down , pale , shaky and so tired ) but he is going to sort this 'piggy -backing ' or 'plagiarism ' out and stop any further things such as this .......dead. He's going to have the parents of both lads in to get this sorted out and all Mikes marks struck of the two other lads so called wonderful college record. A very worried mum .........Ami xxxxxxxx

If you want to read a funny story , but not so funny story then read this ..............for alcohol is like a form of torture for both Mike and myself I have in my youth ( can I remember back that far ) had a couple of drinks thinking , this is OK no problem ...........but what I might think is OK to me , isnt to all around me and I was doing exactly what Mike did . You see alcohol acts as a really bad depressant and OMG did I go strange ...............OTT BIG TIME with just two or three drinks inside of me, and Mike, my poor lad is exactly the same. Read on .................he went out with two of his mates mid August to camp on the cliff tops and like most lads of this age took some cans of beer with them . They started the camp at mid afternoon and Mike had one can of cider , at about 6-7 pm he had another one ...............then at around 9 pm he had his third ( his mates had downed twice as much as this by then with no effects ) . At 10:30 pm after struggling with him of 1 1/2 hours we got a frantic call from jack his best mate in a panicking voice : ' Help , Help Mikes gone all strange and he's sicking everywhere , he doesn't know who we are ,he's really upset and we dont know what to do ' Needless to say an alarm bell rung in my head and armed with buckets , towels and wet wipes Mark and I drove to the nearest point to the camp site , to be met by all three lads outside of a farm gate and what a sight !!!!!!!!!! Mike was not only covered in sick ..........and I do mean covered , but cow poo was stuck in his hair, on his hands, face and clothing and the smell was quite undeliverable !!!!! Mike was crying his heart-out at the top of his voice , great big shuddering sobs with foot long trails of snot streaming from his nose ( like little kids do when they have terrible colds ) he didnt know where he was , who he was or what he was doing . Jack and I had to half drag half lift Mike to the car , who I might add was still bawling his head off like a man who'd just lost all his family . He knew who I was , but other than this he had no idea who Mark was , Jack or his other mates was . When we got him home .....still bawling his head off very loudly , trying to get him up steep steps when he is 6 foot 2 inches tall and walking like an 18 month old baby and I'm 5 foot 2 inches and the steps ( all 12 ) are as steep as you can get , well it was like watching a Laural and Hardly film !!!!! But I managed it , then up the stairs to the bathroom , where with Marks help we had to strip him to his boxers and wash , scape and dig out cow poo and sick from just about every orifice imaginable . Sticking him on his side in bed with vast quantities of towels draped everywhere around him plus a bucket by his side , that is after somehow managing to get the following down his throat : anti-sickness, replacement salts, paracetamol, diazepam and a stomach protecting drug was something I class as an outstanding achievement . After sleeping all night with Mark and myself doing 1 hour checks , he woke up at 9 am with a look of utter bewilderment on his face as he sat up ......... feeling wonderful .............and asked if he had been out last night or not and did he or did he not arrange to go on a camping trip ???? It took us sometime to explain what had happened and he wouldnt believe us at first until Jack his mate arrived looking very worried and explained how he and the other lad had stripped Mike down to his boxers to change one set of clothes which had so much sick on that you couldnt see the clothing at all ..........and then explained why Mike still smelt of cow poo .............he had fallen over and fell head first into a huge pile of the stuff rolling around in it as he tried to stand up , fall down , stand up then fall down again. I've been T-Total since 1st January 1974 and Mike is now the same , but his two mates still talk about the night Mike sobbed his heart out crying for everything and ever name they said at him including : next doors dog a tin of beans a packet of twiglets and all sorts of crazy people or things they could think of ..............all of which is on tape and they intend to play on his wedding day ..............Oh poor old Mike Aren't boys just wonderful .................but a lesson learnt the hard way for Mike ............Ami .

Interesting post this. I'm an extrovert , have been since I was about 15 -16 years old and am still very much one according to my husband, even now I can still quiet easily get up and do a presentations in front of hundreds or thousands of strangers at charity events and it doesn't bother me at all . As for controlling my problems I agree with sunfish as I to have major problems with nerve damage to my autonomic nerve system and I'm getting worse as the nerve responses get slower and slower due to degeneration. I have Raynard's and have on many occasions wished that there was something other than drugs that would help with this problem as I cannot take drugs for this because with the amount of other medication I take , but alas the thought of being able to somehow switch myself into 'warm up mode' of the hands , feet and nose whilst not affecting all my other problems is mind boggling to say the least . It would be a wonderful idea if I could actually have been able at some point earlier on in my condition to have been trained in controlling things like my low heart beat , sweats and other nasty little things that creep up on you when tottally unexpected and boy oh boy would this have saved me some very embarrassing times , let alone pain in the past , but alas mind over matter in the case of my son and I is just not an option , shame though I quite like the idea of being able to stop my body from playing unwanted games with my life . Ami xxxxxxxxxx

Hello Suzanne , So sorry to hear that after such a special event as your sons 18th Birthday you've done what we all do after doing to much , thats the old total and utter exhaustion , and oh boy do I suffer from this The only way I can describe it to my husband is having flu without having it !!!!!!! The awful aching limbs , the inability to be able to do the smallest thing for yourself let alone anyone else, the 'just let me lay here and quietly sink into oblivion' This is a lesson well learnt as most of us have to at sometime or another , I have a very old saying which I relate to POTS and the way it effects us all , it goes 'what comes around , goes around ' in other words , what you do one day , comes back twice fold the next and if you happen to 'over-do -it' you really suffer the consequences of your actions .............says she who's always doing to much and then having to spend 2-3 days stuck in bed flat on her back unable to even walk to the loo at times .................yep, many of us have been in your position and it isnt nice. As for your specialist , I dont think any consultant really has a full understanding of POTS and just what it does to our bodies , unless you have first hand experience of the pain , aching joints , lack of energy and just down right total and utter exhaustion from doing what they would class as a normal days work .................well think about it , how could they ! I've been like this since I was 13 years old and am now in my mid 50's and still not one doctor has come up with a suggestion as to how to help me with any of my daily problems ...............but one day who know's miracles do happen you know. Look after yourself and dont push yourself too hard , moderation in all things now , whatever it is it will wait and nothing is more important than your health at this time , so take care . Love to all out in OZ Ami in Devon xxxxxxxxxxxxxxxxxx

Thanks for your replies. When I was first seem by Professor Roger Bannister way way back at the National Hospital in the 1970's he felt that although he couldnt put a name to what I had that the chances of it be inherited was NIL. Then when I was diagnosed properly ( first time after many , many years of misdiagnosis and none -diagnosis) I was told that Autonomic Nerve Dysfunction was Not inherited . Later I was told that I could possibly give it to my daughters but not my son ....................and now they are saying that it is inherited by all So what I'm going to say to Mikes consultant is would it be possible to do a full gene's test to find the bad one thats lurking in us and then to somehow screen this for Mike so that it will die out with his kids and not be passed on to anymore of the family . Mikes even suggested that if this isn't possible at the time when he wants kids that his wife and he may need to have test tube babies in order to sort this problem out at very early stages of fetus grown in order to eradicate the rotten gene .............my son has definitely got his head screwed on the right way , which is why he's going into forensics as a profession . In all he's taken it quite well and has said even if he has to suffer like I am at least we have found out now its been passed on and he's not married had kids and found out in his twenties or thirties that he has it and his kids have it as well , he doesn't think he could stand it knowing that he'd given such a terrible condition to his own kids and thinks that one way or another between us the condition will stop here and now with us two . So level headedness takes over and we will win this one . Ami & Mike .....................xxxxxxxxx

Thank you all for your support ,I never thought I'd ever have to tell one of my own children this awful news , but in all he was the one who was strong out of us two. I sat in the car and asked Mike where he would like to go to first as we had decided that he needed a bit more than just a coat and a new helmet , rather a lot more in fact I think from my face he knew something was up and as we pulled away from home he turned and asked me: 'what is it ? ..........has one of your tests come back ? .......is Mark getting worse ?..................or is it something else?' I couldnt actually face him to tell him but kept driving for a minute then pulled up and just said ' your TTT test came back yesterday ..............silence' 'And ' he asked. I watched him from the mirror as I told him that it was positive and that at one point his blood pressure bottomed out at 22mmHg with a registered heart beat of 37 which is why the consultant flipped slightly at the time'. Watching his face I could see how brave he was trying to be , but his eyes welled up and he looked at me and just said ' well thanks world , like mother , like son , hey mum' He then just took a huge deep breath and said ' well , I think you knew all the while that I had it and if I'm honest I think I knew as well , but just hoped you where wrong and I was just imagining the pain , headaches and all the other rubbish I'm having ' And that was it ...............he just started talking about shopping and getting sorted for the winter months so that I wouldnt get worried about him getting cold or wet ! I cannot believe how he took what I told him in such an adult manner . We then did some mega shopping and I have to admit I did buy him tons of stuff which he needs for college in the winter months ahead , including a mega hooded waterproof extra thick /long sort of designer Parker but without the fur and in a really good quality dark grey/ black /light grey check pattern ( I'll have to take a photo of it so you can see ) a full visor bike helmet , 4 pairs of black trousers, 2 hooded jumpers ( very heavy weight fabric) a pair of black leather ankle boots and a pair of brown /cream/black designer trainers , which I think made his day because everything in the store he picked up and said he liked I bought for him , which is something I dont normally do but I'd put some money away for christmas and decided to use a bit of this , I think Mike needed to feel that even though he was different from his mates he could still look the same even though he has to wrap up and keep warm and dry . We also picked up one of his best friends a lad called Jake , I explained to him that Mike was positive and he was so upset , as was his friend I spoke to on the phone earlier this morning , both of these lads spend so much time at my home its almost like I have three sons instead of one and sometimes forget they aren't mine when buying stuff!!!!!! which of course they dont mind at all and keep calling me 'Mims' So after shopping all three of us went to the wet wok and Mike started to speak about how he felt about being like me , he said that at least he now knew and unlike myself didnt have to suffer years f being made a fool of by doctors or being called a lunatic and that when he see's his consultant in a couple of weeks time that knowing what he does now means he wont be shocked with what else he has to say . I think that the bond we have between us as mother and son is so much stronger now , he is out of all three of my children just so like me in so many ways , a real tough guy but with a heart of gold that he's not afraid to show and if it is possible I'm even more prouder of my son than ever . I suppose the only dark cloud hanging over me is my daughters , as we do not have contact I now wonder if they to are suffering the pain and humiliation of having the condition but not getting anyone to listen to you or believe what you are saying and it does make me sad to think of them both . It has been at least 10 years since I spoke to 'A' my eldest and 5 years with 'E ' my middle one , and yes I've tried so many ways to 'mend' what has gone between us even thought it has been both Mike and I who have suffered at there hands and not the other way around , but with no joy. Even there own father doesn't understand why 'A' my eldest is behaving like she is towards me and quite honestly I dont think she knows either and I now think its all down to that so much time has passed with me saying ' I'm sorry for anything I've done to her, her husband and her children ' ( which I was told to do by a counsellor in problems such a this within families ) even my ex husband doesn't actually believe there's anything for me to be sorry to her for . What we now think is that she is now so embarrassed by what she has done to Mike and I and by the fact I am saying sorry for her actions , she just cannot contact me because she now knows it is she who is in the wrong ...........if that makes sense to you . And as for 'E' my middle daughter the one who physically and verbally abused me in and outside the home ( and in public ) , I'm afraid mother hood hasn't calmed or mellowed her at all and she is still somewhat unruly in her ways , which grieves me know end . I thought that when she had her own child she would understand how a mother feels towards her children and just how much it hurts to be abused by the people you never thought would hurt you , but it appears not . So as for my daughters I fear that I will never know if as yet they to are showing signs or have POTS along with Mike , and as my husband has said often enough , I'm not to worry about them , they didnt want to be part of this families life and have the love , care and kindness that I show to my children , family and friends , it was they who changed , not me . At least today's over and Mikes OK and we can now take stock and look to the next hurdle which is the consultants appointment in three weeks time . Bye for now Ami xxxxxxxxxxxxxxxxx