willows

Mikes not having a good time of it at the minute , the heart monitor that he has to wear until the 3rd of September which is stuck onto his chest and has an electrode stuck to his side with so called 'extra sticky , almost gel like pads' keep going 'walkabout' in the night add to this the fact he has a plastic curly wire around his neck and this leads to all sorts of strange sounds coming from his room at 2am ....3 am.....4 am onwards. The poor boy keeps waking up either being strangled by the cord around his neck which with a mind of its own seems intend on adding parts of his pillow or covers to its person , Mike unaware that the cord has taken hostage parts of his bedding does the 'arms above his head and shaking the covers movement ' only to be meet by the cord , which is able to be stretched from around 2 foot long to 3 foot long , suddenly turning into a huge spring which mounts a nighttime attack on him shooting covers , cord and any other bedding caught up in the 'free for all' back at him with whacking him in the nose with some force ........... rather like being smacked on the nose with a cross between an elastic band and a slipper , well that woke him up ! . Unfortunately the under arm electrode has also taken on a life of there own since entering the house and seems to have one object in life , this being to move upwards in a quiet undetected manner whilst the poor lad is sleeps, then to suddenly attacking him like some crazed hairdresser tearing out his under arm hairs by the roots ......... ...........just visualize the poor lad sound asleep , innocently turns over and then all of a sudden someone armed with a pair of pliers grabbing a handful of hair and pulling the lot out , of course said lad jumps up shouting at the top of his voice in a 'very genteel manner and voice' (cough , cough) ' oh , dear ..........someone is attacking me ' which leaves no one in the surrounding area in any uncertain terms that he's having body hair being pulled out from somewhere . Add to this the central heart monitor which should be right smack bang between his breast bones in line with his armpits going 'walkabout' and ending up by his left ear or stuck to his belly button , which if realised without thinking at 3 am in the morning springs back on the stretchy lead whacking him on the forehead or chin and I think I can say Mikes nights are at this time filled with a sort of night time activities that any good sadio masochism would dream of !!!!! In an effort to bring him some relief I've now taken to strapping Mike's chest area up with that stretchy rubberised crepe' bandage at night , so now he looks like he's been inflicted with some strange condition that grows large lumps about his body. Mike likens the bandage to how us girls must felt when we started wearing bras for the first time as he keeps wanting to scratch , scratch , scratch all the time ( that brings back memories for me ) but at least he's not being attacked all night anymore..............nope.............now he says its like having a small rubber bra strapped to his chest which is full of itching powder................I dont know , you just cant win can you !!!! Willows.

Sorry your feeling so bad at the minute . I get electrolyte imbalances and its a sort of sick , head-achy , tired , sweaty , blurred vision time , which in all is almost what I get each day but 1000% worse! I'm having terrible problems with the heat in the UK to and we have never had or are likely to get AC in the house. I'm spending 99% of my time upstairs laying on my bed in the darkened room with a fan on watching TV or DVDs all day , lots of cold drinks and fruits and an occasional ice cream , I cant eat normal foods when I'm like this and venturing out of my room , even for the loo leaves me dripping and short breathed .As for going downstairs OMG once down its like I'm hit by a brick wall of heat and no air and I cant wait to get back upstairs again ...........except the stairs which on coming down looked fine now seem to be a high as a mountain and every step I take just makes me sway around and I tend to end up on all fours crawling upstairs with my son or hubby behind me to catch me if I should slip and fall backwards. I've also had a couple of panic sessions trying to get out of clothes when I've soaked myself with sweat so much that the cotton kaftan that I wear is stuck solid to me and I needed to take it off, if I cant get one of the boys to help me at the time I've stupidly tried to take it off myself and got it stuck over my head...................twice I've nearly passed out whilst having this stuck on me like this and my screams for help have been heard half way down our road so much so that both boys have banned me from taking anything off thats got to come over my head without them in the room for assistance. I hate hot weather . Willows.

Hi Lisa, If you want to read about what happens big time read 'Willows son crashed 4th July' , my poor son has never had problems with needles or blood teats until around 2001 when his POTS symptoms suddenly got worse, he'd had glandular fever and I think it just kicked his POTS in big time , poor lad. His reactions to having an injection , blood tests or anything like this is extreme to say the least . And the nurse who looked ..............and I say this with a black look on my face , looked after him on the 28th of this month when he had over 9 blood test within a few minutes of each other .............well this so called caring male nurse should go back to nursing school or leave the caring profession he's working in , because caring he was not ! Willows.

OMG I get this in my upper legs ................from my inner thighs to my inner knees and sometimes it feels like I'm wetting myself , not a nice feeling ! So many times I've had to stop if I'm out and say to hubby 'hang on a minute , somethings not right here , must find a loo ' only to discover that I've not wee'd my trousers !!!!!! and at times I've sat on a cold loo seat , stood up and felt it running down my legs ...............only to find its not running down my legs ! I'm SSSSSSSSSSSSSSSSSooooooooooooooo pleased that someone has brought this up and its not just me doing weird and wonderful things . Yes, I do get blood pooling in my legs and am supposed to wear surgical hose, but with my sweats is utterly impossible...................so may be I may have to think again about them and try it again and just see if I can bear them in this weather . OOOOOOOOOOOOOOOOOh. nearly forgot , I get this running water feeling in my ears as well , could this also be blood doing this magical game of running up and down hill ????? Willows.

Blimey , I take loads of stuff from tablets to sprays, patches, creams, gels, things you mix with water to things you inhale adding in and taking out from a set number of my daily tablets which at base line are 10-12 different types of drugs daily , so I add in and take out the rest as needed. On a bad day I can take up to 15 different types of drugs double or triple up amounts , over a 24 hour period, so I could if really bad take upwards of 30 tablets if I need to . But I also have painkiller patches, GTN sprays , eye drops, creams , etc if I add everything up it comes to a grand total of ............29 drugs of different types............all checked so that each one is safe with all the others and not once have I suffered any side effects from mixing them around , I suppose I'm lucky ,but i dont take what I dont need and never take more than the upper limit of any of my drugs without calling my doctor first and checking , better safe than sorry is my motto and its worked very well over the past 10 years which is when my vast amount of drugs started to build up. Ami ...........rattling around the village

Now if your American you'll be saying ' what cat ??? what bag??? and why is it in bag for so long before Christmas 2009 ????? But if your English you'll know exactly what I've done ..........I was just waiting for the right time to tell the boys and today was that time When Mike was very unwell having blood tests done today in an effort to bring some 'sudden colour' back to his yellow face and take his mind off what what going on I let out my biggest kept secret to both hubby and son .........and boy , oh , boy did it make them sit up and listen to me and the colour flooded back along with a huge big smile ! Yep, in December 2009 hubby , son and I will be winging our way to Miami USA to board one of the cruise ships to take us around the western caribbean for the whole of christmas . As hubby and I haven't had a honeymoon yet let alone a holiday we are going to have two bedroom suite this time as Mike needs his own room ,he'll be over 18 years old and quite honestly I have never had a child or another adult ( other than a husband ) share a room with me , ever......on any type of holiday I've been on and never will . So with two bedrooms, two bathrooms a lounge and a butler to look after us ..........heaven utter , utter heaven for us all . Mikes is grinning from ear to ear as he knows the sort of things I like on holidays and what I will and will not except as standards and Mark well the last cruise I took him on he proposed to me , so may be this time he'll buy me that extra special eternity ring I've always wanted in tanzanite from Jamaica . Its count down time here , with weight to loose to get into my carefully stored evening gowns and clothes for the boys to start thinking of : so many tee shirts and shorts to buy !!! and all the rest of the clothes to sort out for 3 of us this time .....................I'm going to have the time of my life over the next 480 days or so ( not that I'm counting ) and may be , just may be having something as wonderful , exotic, extravagant and plain mind blowingly exciting to plan and buy for will make me a bit more mobile , a bit more alert and give me something to aim for .............a huge bright sparkling light at the end of a very long tunnel .........and the lights got christmas bells on and lots of sparkly bits.................of course I'll keep you all informed of any special clothes buys I make before th cruise and any secret presents I buy to take with me for the boys for christmas ( we cannot take loads of presents only one or two each , the rest when we get back ) Excited .................. you bet I am , so all three of our docs had better let all three of us fly by then or well one of the docs will just have to come with us ! Ami ..............and her evening bag , lipstick holder , padded mirror and matching coin purse that Mike bought for me today after the hospital visit , a thank you for such a wonderful surprise from Mike. ................I've such a nice son XXXXXXXX

Today 28th August , Mike, Mark and I went to get some of the tests done on Mike for this new POTS doctor. First he had to have 7 lots of blood taken, which none of us where told about ....................OMG this so called nurse just sat Mike down on an easy chair and started ..............of course the first thing that happened was Mike went as white as a sheet followed by bright yellow , sweating like mad and then started to heave But did this nurse care ............NO, he just carried on while I held Mikes head up and shouted to Mark to find a sick bowl as Mike was heaving something rotten by now ..........but did this nurse give a monkeys.............NO he just carried merrily on , Mike was getting drenched with sweat and looked like any second now .................and he did , out cold ...........but guess what ????? The nurse carried on and even looked up at my son and ...........GRINNED at him neither my husband or I can honestly say at this point that had we been alone with this nurse either of us wouldnt have said a few unkind words to him or had done something that would have been something very out of character for both of us , and how my husband didnt drag this nurse off Mike and shove him out of the room , well I'll never know because we both felt utter contempt to this male nurse , his uncaring behavior and the fact that he thought it was somehow 'funny ' at what was happening to Mike by grinning at him. So with Mike unconscious and me holding him onto the chair and mopping up the sweat that was pouring out of him I at least managed to stop him falling onto the floor with this nurses needles still attached to his arm ...........some 10 minutes later after this nurse had written up all the labels attached to the blood samples ( and no there was no other patients in the room , no other blood samples to mix up present in the room and no medical emergency going on around us at the time , so he was just acting like some uncaring , ignorant pig) Having finished his paperwork he turned around and said to my husband and I 'when he's finished you can move to the room next door and lay him down '!!!!!! When he's finished !!!!! As mike started to come around , some 15-20 minutes after blacking out , still sweating and the most awful colour imaginable , Mark hauled him to his feet and literally dragged him out of this little room .........where outside was a load of people waiting for various blood tests, chemotherapy infusions and to see the doctors for tests etc ........... As Mark dragged poor Mike out of this little room , now with plasters stuck up and down both arms from the tests the people sitting in the waiting room and the staff all looked shocked at what they saw and a ripple of 'Oh , MY OOO' went through the room as my one handed husband literally dragged poor Mike , who couldnt walk , looked like death and who's eyes where rolling in his head .........with help from no one of the nursing staff who just stood and watched us struggle between us .......to a section further down that had beds in cubicles so Mike could lay daown and recover on , Mark struggling eventually manged to get Mike onto a bed and after around another 10 minutes or so he started to look a bit better in colour. I had brought him a sports drink as I knew this may happen , so with some care I managed to get him to 'sip' this over a period of 20 minutes.............only to have this male nurse come back and take more blood ..............and watch as the colour started to drain out of Mike face again. So what did I do ?????????????? No nothing violent , which is what I wanted to do to this man , after all what mother or father seeing thier child being treated in such an uncaring way wouldnt want to give back some of the 'wonderful care ' that the person was giving thier child ............but I didnt . Instead I got up went to the other side of the end and grabbing Mikes face turned out towards myself and started talking VERY loud at him , very fast and with some excitment .............'Guess what ' I said all excited ( not ) 'I'm going to book us a cruise for next Christmas to the Caribbean ............a suite with two bedroom ..........' even the nurse was looking all excited now ............. Mikes eyes light up ...........' and ' as I started again ' I thought as we have all been so ill for so long and one almost nothing holiday wise , well christmas 2009 will be something to remember. Blood test over and done again .........more drink given to Mike and of course he started to ask questions about the holiday next christmas. All way well and I'd been talking to both the boys for around 20 minutes now and Mike and Mark where both looking happy and and fit again .................when yep, he came back again for a third time and more blood. Poor Mikes face was a picture as his right arm was very sore now , so the nurse went to the other side ...............with me grabbing Mikes face again and setting off talking about the shopping spree we would have to do in order to get all clothes we need for the cruise ( blimey what a mum will do for her kids ) So off I went again in full swing , on and on about evening suits , box ties and the number of different restaurants the could eat in etc ....................blood test finished again , and Mike still a nice pink colour and talking to me ! So after this we went to have an echo done on his heart and then he had a 7 day monitor fitted , this can be taken off every day when he showers................which surprised the new nicer nurses somewhat as Mike having had it put on immediately asked ' oh , what about my daily showers '???? which somewhat surprised the nurses as most lads of this age who have to have thier hearts tests seem to use the monitor as an excuse NOT to shower daily So we cam home .............well almost ..........we had to stop off in Torquay at the bank for Mark and as Mike and I sat in the car we happened to notice a very nice shop , which had some wonderful bits and bobs in including a wonderful Chinese silk/satin bag, with matching padded mirror, lipstick case and coin purse ( which Mike found that matched exactly) the bag is a sort of a cross between emerald green and royal blue ( of you can imagine the colour ) almost like the colour of the gem apatite ............and it matches a wonderful absolutely beautiful Chinese evening jacket I have ................... So, it looks as if Mark, Mike and I will all being going on a cruise around the western Caribbean next christmas as my wonderful sons just bought me the bag and other bits to go with my jacket for one of our evenings on board!!!!! It was defiantly the right time to tell them both , I'd kept this idea so quiet for so long and I'd been keeping clothes Mark or Mike had bought me in a suitcase for this for about a year now ( with them thinking i'd lost the plot for some reason ) Mike is over the moon about the trip and the blood test and what happened have disappeared and he's started to look up all the places we are to visit . Of course you know what I've now started dont you ??? A count down in months , then weeks then days ( as it gets nearer) to the biggest holiday my son has ever been on and possibly Marks and my honeymoon after 6 years of glorious wedded bliss. Well there's only around 480 days until board the airplane to Miami to start our holiday ..............as long as Mark can fly and is well enough , Mike can fly and is well enough and the same goes for me ............480 days is a long , long time to keep bug free and mobile. More test and appointment with his consultant in September , I'll tell you any results as they happen . AMI ....................Mike ( grinning in his sleep ! ) and Mark ( snoring like crazy , hence me down here on the putor) XXXXXXXXXXX

Today was a very emotional day for both Mike and I ............he got his brand new bike and all the gear and did his bike road sense course. As we live so far out and there are so many 'grockles' on the road I had to be Mikes escort home and we did a victory drive around the village !!!!!!! OMG he looks so smart with his bright sapphire blue and black bike , black/white leathers and blue/black/white helmet and it really was difficult not to burst into tears on the spot when I handed over the keys to him . Pride is a huge lump in my throat and my hubby trying to look like he had something in his eye !!!!!! If someone can suggest where I can put a photo or two of him , then you can all share this moment with me , I'm sending Corina a set of photo's and if anyone else wants to see email me at home . AMI .

I've had a good look about and done a search but as yet have come up with nothing related to my problem. Its now almost 1 o'clock in the UK and I've been in constant upper back right side jaw pain for over 5 months now ............I've had the dentist check this out 3 times, x-rays done and at first he said it was my gums moving back off my 3 back upper teeth exposing some tiny-weeny holes and that its this this is causeing all the pain ...........er , he was wrong ! He's filled this tiny weeny hole with some sort of filler that needed a special light to seal the stuff with , then set about putting this banana flavoured fluoride over the top for protection ......which sent me into fits of screams having me riding about in utter agony in the dentists chair, I dont know who was more shocked ...........him or me ! But after some seconds he was able to remove what he'd put on and calm me down , but the pain carried on at level 8 from this day onwards. Poor dentist has now asked the hospital to see me as he cannot find a thing wrong with my teeth , he now feels that his first diagnosis of my gums moving upwards was not quiet right , he's looked at all my teeth and has pointed out that none of my gums are receding , I clean my teeth extremely well , have no build up of anything on them and an not in need of any fillings , and for my old age well thats brilliant ! What I'm now concerned about is that I still cannot eat properly, hot, cold, you name it it causes me more pain .I cannot eat on this side and last week the left side of my tongue was quite sore . I'm not talking as much . which keeps making my son and husband think they have done something wrong all the time .............men honestly ! and tonight I've spent around 6 hours with my face and ear on a warm hot water bottle and downed 40 mg of Oxycodone a couple of hours early because I just could take the pain anymore ............and its not touched it ! Around 10 years ago I had the top and bottom wisdom's taken out on this side , but instead of healing the holes got bigger and bigger and my upper jaw bone fell through .I had to have daily injections into the upper jaw and then after 6 weeks of utter pain and my weight plummeting they opened up my back jaw and cut away the jaw which was comming through and sew the whole thing up again ..................and yes it did hurt as I was awake all the time . This pain I'm now feeling is identical to the pain I had when my jaw was coming through my face , its also gone up into my cheek , my ear and the side of my face and its just so awful . Pain killers dont work and I mean even the big guns one I sometimes have to use for other pains I get , hot water bottles do help a small amount , but I cant walk around with one stuck to the side of my face 24/7 can I ................ Has anyone any ideas while I once again wait to be seen by the hospital ?????? Having constant toothache in my 3 back teeth, my face and now my ear and trying to cope with all the other bits on my that are playing silly is really getting me down and at the minute I'm thinking of taking myself off to see my local doctor tomorrow morning first thing and demanding help ,after almost 6 months of tooth and face pain its just all getting me down . Willows.

Hello Hollie. OMG someone else who gets them as well , not that I should be happy that you do but knowing that someone else suffers exactly like me helps when I natter to my own local doctor and soon this new doctor who's a' fully paid up POTS man' ( English terminology ) I dont know what this is called in the USA but on the box the 6 sachets came in it states Quote: 'Fast and effective replacement of lost water and body salts' Its normally given to people who have chronic diarrhoea , like when you've been abroad and caught some awful bug and you end up sitting on the loo losing all you stomack contents one way while trying not to sick in the handbasin my that brings back memories of a Madeira holiday with my dad !!!! I've just checked the ingredients list and it contains: Glucose.......Sodium Chloride....Potassium Chloride and Disodium hydrogen citrate and some flavouring . So may be if you put these ingredients into google with 'what is ........................then the list I've given you , well it may come up with a list of names for this stuff , one of which may be available in the USA. Hope this helps . By the way , when this happens to you do you get any warning signs its coming ? or do you like me just wake up with it , I always wake up with it and have never had a session start at any other point of the day , which I find most strange .Also I've not done anything the previous day , like not drunk enough or eaten something different or over done it .........we can think of NOTHING that triggers mine off, and I've had SSSSSSSSSSSSSOOOOOOOOO many of these episodes and each one is just sole destroying awful, I dont know about you but I normally need 24-48 or even 60 + hours to get over one of these and get back to my normal ( of thats what you call it ) silly self again. Lots of love AMI

OMG ........................my hubby is dancing about ( as best he can ) with a big smile on his face ! Why your all asking Well yesterday 19th August 2008 I had one of my crashes..............woke up after a really bad night of pains and headaches , to be met by : Excessive vomitting , a headache when I lay down but that goes when I stand up chronic sweats out of control, chronic leg pains , blurred vision, excessive urinating , excessive fatigue and looking like I should be choosing a plot in our local cemetery . Mark , has been searching the net for months looking for help with this problem as it leaves me in a state of total 'crash' and unable to eat, drink , walk, talk or see..........and he seemed to think he had recently heard on the TV about something to do with the olympics and this , well he was right ! Apparently its called a 'full body crash' and athletes get this when they have been excessively training and they get a very bad in balance of thier body sugars and salts goes out of control. So hubby hearing me talking to him up there on the big white telephone did a hop and skip to our local chemist and bought a pack of 'Dioralyte' and after 1/2 a sachet going down and 1/4 coming back , then 1 sachet going down and 1/2 coming back ..........you get my drift well in the end he got 2 whole sachets of the stuff ( mixed with warm water and some juice as it tastes so yucky) down of me . As I normally suffer from this once it hits me for anywhere between 24 hours minimum and 60 hours maximum ..............I'm in shock as after jut 8 hours it stopped ............... to say I'm in shock is an understatement !!!!!! So I've just emailed my doc with what happened and am now asking for a supply of this sugar /salt mix for any further body crashes. Mark is so pleased that at last he's found something that will help me , it makes sense doesn't it , if my body looses sugar and salts .....for what ever reason and I go into one of these crashes , well putting them back will stop it dead , and it did . Ami .............lookin like she's in the land of the living again XXXXX

After another session of Make sliding down the wall in my room looking like death and sweating again we've now been to see the POTS man and OMG he's the Biz. Over the next 6 weeks poor old Mike is having a TTT and an echo cardiograph, ECG, a 5 day heart recording and so many blood test including ones that they inject him with stuff to check all sorts of things. This doctor in Torbay hospital Devon seems to know his stuff and I was quite impressed, so impressed that I am going to ask my GP to send me along as well ! So far .............after spending sometime talking to the doctor about how Mike was a prem baby and didnt walk or talk until he was almost 2 ( yep, very late ) and then how from the age of 3-4 he's done nothing but catch everything thats going including bleeding from the kidneys at 4 years old so bad that a professor from addenbrookes was called in to sort it and having glandular fever at 10 years old ( no one else in our village had it ) being tested for BT at 7 years old, having croup , pneumonia, chronic high blood pressure, low blood pressure and all sorts of other strange and unusual illnesses ....well this doctor is listening and taking notice............well done ! I dont know about you who have children , but a lad who is 6 foot tall and of a good build to catch so many unusual illnesses at such early ages just doesn't seem right to me ..........and the doctor agrees. Its almost as if he's copying my bad health from an early age but with different illnesses and its so worrying , but at least the doctor has seen sense to get Mikes 'hitting the deck' sorted out before it starts to effect his college work . I'll keep you informed of events as they happen ..........................willows....... mikes mum.

Thanks all for your replies..................forgot to add that I also get what I can only described as very fast and somewhat strange 'body glitches' What I mean is that I'm feeling fine then all of a sudden I full body twitch , its like a very hard jump but not nice I can tell you . Sometimes I'll have 3-4 in one night and its not just annoying but it effects my ticker, sight and all of me. It feels almost like I'm trying to 're-boot' myself ..............well that is if I was a computer!!!! NOT FOR THE FAINT HEART THIS BIT! At the minute I'm in agony as the right side of my face has been in such pain for over 8 weeks now , all mt teeth from the middle of my nose to the back, my jaw, neck, eye, ear ..............the lot . I have to try and eat with my head almost on my left shoulder as even food hurts I've had all my teeth checked out and my dentist has recommended a toothpaste with something in that stops pain ................ha! and I'm a monkeys uncle I think the tooth thing all stems from when I had my wisdom's out about 6 years ago . Unluckily ..............or so my dentist said at the time , one in about a million peoples gums do what happened to me instead of the gums closing around the hole , oh .....no. Mine well , they decided to open up and expose the bone of my jaw.......................o.............u..............c...............h and then get bigger and bigger . In the end I had to have daily painkilling injections for about a week and iodine cotton wool stuffed into the now large holes in my right jaw was followed by the dentist ( now sent to the hospitals dentist ) cutting my jaw bone away on this side and trying to find enough skin to sew together over the bone......................something that had me hanging on to the chair white knuckled ...yes I was awake all the way through it ! I now think its all starting up again , becuase the pain is just as it was when my jaw was exposed , OMG is having some effects on my weight and what I can and cannot eat . Well never mind its all sent to try us and try my body may , but it isn't going to win ! Ha............................Willows crazy as a bag of frogs in a microwave!

Hello all......................yes, I'm still around , but having a rather bad time of it all at the minute which is why I'm quiet most times. One new problem I'm having is this full body tingle ( fine pins and needles ) that keep washing over me ..........most strange ! The first one was when I was laying on the bed watching TV , all of a sudden this wave of tingling started at my toes and washed straight up my body in a matter of seconds , just like a wave would do if I was laying in the sea ..............it came almost up to my chest before disappearing . It wasn't , as far as I know to do with anything I'd taken ( drugs wise ) as I wasn't due anything at this time, I hadn't eaten or drunk anything that could possibly cause this or was laying in a funny position so may have trapped a nerve ..............becuase I've had other 'tingling 'sessions since and not been doing the same thing at the time. So if anyone gets this or knows why , please let me know as it does rather bring you to a full stop when it happens and somewhat worrying . Willows. XXXXXXXXXXXXX

I get the same in the UK and quite honestly it all boils down to one of two things ............either ignorance of the right to have and use a disabled parking badge or what is more worrying is that its envy And I'm not joking about people envying people like you or I . I've parked up before and put up my blue badge ( thats when I'm well enough to drive let alone walk around anywhere) and I've been stopped by a number of woman asking me why at such a young age and looking perfectly well I should be using a disabled badge and whats worse is they ask me ' is that your badge ' !!!!! I just walk away and leave them standing there, I used to try and explain that 'POTS' is very rare and that some days ( very few now) I can look almost normal ( except for the walking sticks and wrist braces) and other days I cannot stand up , let alone get out of bed . But struggling trying to 'put my case over' and 'prove myself innocent' of any uncalled for charges they seem to put on me 9 times out of 10 would set of a nice bout of either the sweats, feeling dizzy, blurred vision and feeling sick or just that ' something isn't right feeling' before a wave of the lot hits you .....................which would leave me stranded in town or at a shop unable to get back home because I will not drive if I'm unwell. So having learnt the hard way ........................any woman and 99% of the time its other woman who like to make these strange uncalled for and unfounded accusations at me , well I just smile at them and walk away , head in the air, breathing steadily and ignore them completely and if they raise there voices in an attempt to make me stop and talk to them ....................I just carry on as if I'm deaf or hard of hearing . In the end its them who look the fool when they stand alone either talking to themselves or shouting at you as you walk away . One suggestion is to have a word with any local traffic wardens in the area you work or live in , I have taken time to explain to them my problems and the fact that if I'm ill I never drive etc, and quite honestly it is the best thing I've done since getting a blue badge . Willows...............who's well known with all the local traffic wardens in her city , no .......not becuase I'm always being told off , but because they know I'm disabled and if someone 'has a go at me for any reason ' these nice men and woman tell the public in no uncertain terms that I am disabled and leave me alone !

Hello all , sorry I've not been back on but it appears I did more damage to myself than I thought , when I did a 'glitch' in the loft I've been in so much pain and it seems I've also torn something in my chest ( above my left boob) and its damaged nerves under my left arm /side and also damaged my right knee. The chest problem has set off an infection and I an on antibiotics now and my knee is driving me mad , its so painful to walk with . And then to top off the lot I've got something wrong with three of my teeth on the right hand side of my upper face ...........haven't been able to eat for three days and am in so much pain . I saw the dentist today who said nothing wrong with actual teeth but its my gums and he then stuck some stuff on them used a lamp to seal it and then put some banana stuff over the top of it ...............and had me screaming around the surgery room clutching my jaw and tears streaming down my face !!!!! So he had to take the banana stuff off again ! Mikes is much better now , feeling a lot happier and looking well .................its just me again . Well better me than him is all I can say . I'd better go now as I'm so tired again , love to all , when I'm up and actually on my feet I'll show you some photo's . Ami xxxxxxxxxxxx

Thank you all for your replies , as soon as Mike is sorted and has his scooter I'll take a photo of him for you all to see. At almost 6 foot now , with bright blue eyes ( takes after his mum ) dark hair and a slim build Mikes is looking rather 'handsome' to say the least and he has many a young and older lady casting eyes at him , but Mike is not interested (or so he says !!!!!) all he wants to do at the minute is get his career of the ground and get some help with pain control and lack of energy , plus get his bike . Some of you may be aware that Mike wanted to be a police officer since he was 4 years old, but with his health like it is and problems with his knees and leg pain , well he's had to do a side ways step and is now on a long and very lengthy road to becoming a 'Forensic Scientist' . 2007 started One years Public services at level 2 .................. passed with flying colours 2008 starts Two years Public services at level 3 .................September 2008 to June 2010 2010 starts Two years foundation degree in Forensic science Fdsc at Plymouth University..............starts September 2010 to June 2012 And then...................... 2012 starts Third years Forensic science degree Bscs (Hons) at Bournemouth University ...............starts September 2012 to June 2013. Which should have Mike qualified as a Forensic Scientist and able to work in the private sector based with the police or take this further and specialise in a certain area of Forensic ................. Basically he started the road in 2007 aged 16 1/2 with just his GCSE results and will finish in 2013 aged 22 with a Degree in Forensic science . Both mark and I are backing him all the way , it doesn't matter how much we have to go through to make sure that Mike gets his degree , Mike is the light at the end of our tunnel and we will help him all we can . I inspect every single piece of work thats for college at the minute and if I think its not 'up to standard' then I assist Mike or show him whats not quite right or how to lay it out better each time , and its paid off because he's not had a 'pass' on one piece of work so far ( a pass means its OK, there are 2 levels of pass, level 1 and level 2 ) . I cant wait for the day when Mike shows his own father and that side of his family that with hard work , determination , and understanding anything is possible . Willows a very proud mum of a smashing boy .

Hi all, I'm just so happy , Mike my son who's been suffering bouts of Pots for over 4 years now and has been struggling at college ...................passed his 1st year , not just passed on a level one pass................nope, level two pass.............nope. But he passed on an overall Merit pass ( some distinctions , but mostly merit awards) . Yesterday he went to the college for an interview for years two/three and when he came out of the interview room and walked down the corridor ( all dressed up in his YSL jeans and black blazer) his face was a picture a huge grin from ear to ear as he explained he was well qualified for years two/three and the tutors are so pleased with him . Anyhow , after some talking and a lot of thinking Mark and I have decided to buy him his first 50cc scooter so he can get from our village to college and then uni after that . You can imagine the excitement here now.................all he and his mates ever talk about is bikes! Most of his local mates have 125 sport bikes ( secondhand ) poor Mike has been feeling rather down about this , when we said he couldnt have one of these because if he came of the injures he may get would be far worse then his mates , takeing far longer to heal ( something I know from experience) so Mike was going around feeling like he was getting a poor deal ..........................until today Having passed his first year so well I then let him into a secret .........................???????? He's getting a brand new either bright red , sapphire blue or black scooter with matching jacket , trousers a really smart and 'cool' looking full helmet , matching gloves and boots that his mates would die for !!!!!!!!!!!!!!!!!!!!!! I think you could say my son is now the envy of his mates and as most of them have had to scrimp and save to buy thier own bikes with no help from parents at all , I've have had a number of them asking if I'd like to adopt them and when can they move in mind you as half of them spend more time at ours then there own homes and I know more about them then their own parents do , well I feel like a part-time mum to most of them anyhow So, I've got one very happy lad here at the minute, having passed his first year easily and being able to go back to college in September on a smashing red ........or blue .............or black bike and all the matching gear , well I dont ever think I've seen my son grin so much !!!!! Boys, honestly ...............dont you just love them . Willows, mum to 3 and adopted mum to so many very tall 16-17 and 18 year old lads !!!!!!

OMG What a shock for you , but so pleased it has all turned out well and he's back on his feet . Thinking of you all . Willows Mike and Mark ....UK.

Hi all, Still here and snapping at lifes ankles...........well more like nibbling them at the minute! I've been at the eye hospital today , seeing a very nice lady doctor ....................hello lady doctor if your reading this ( yes, I gave her this site to get better acquainted with POTS ......lucky lady ) So, question for you all , which I'm hoping will help me as well as others Who of us with POTS suffers ongoing eye problems ?????? Mine are varied as you know , they are still questioning if I've got glaucoma and hopefully soon someone will figure it out , but in the meantime I keep getting bouts of the most awful eye pain ( like sharp needles shooting into your eye) redness like I've just come out of a Boris Karloff film after a long drink with my mate Dracula and the feeling like I have half a ton of 'something ' in my eye . This ' things in the eye' will just suddenly start 'out of the blue' first the feeling of something is in the eye, then scarlet eyes, blurred vision , pain , swelling of the eye and eyelid and the eye streaming ................hours of this drives me quite mad ( even madder than I am now) So.......................as I've lead this nice lady eye doctor to this site ( wave to you from Ami ) hows about us giving her a hand and just giving her a bit of a low down on POTS and how its 'plays ' ..............and I say this word with tongue in cheek guys ..............plays with our sight . I'm on steroid drops at the minute for about 7 days to help with my right eye again so hopefully all will settle down until the next time ( which I utterly dread as its just so nasty not being able to see properly ) Love to all , Mikes much better now and I'm up and walking again ................Willows XXXXXXXXXXX

Sorry I haven't been able to get back about this but two days after Mike crashed I had a very bad fall and have been unable to do anything as I have been stuck in bed until now. Mikes looking and feeling much better now, he's had a rushed appointment from the Torbay hospital and is all set to go and see the new man at the begining of August . Mikes showing so many signs of POTS now and I am more certain every day that he is following myself down the dark and miserable Pots road, its almost a mirror image of myself , especially when he crashed , OMG he did exactly what I do when I'm really bad . I feel for that poor lady doctor who has never witnessed myself or Mike being unwell before , I think you could say she was shocked . Anyhow I'm now up and starting to move around again , I 'glitched ' just for a couple of seconds I blacked out and fell backwards like a broomstick ( as stiff as a board) holding a box and hit the centre of my back on the upright hoover as I landed..............with a loud smack on the floor . Yep , you could say I was in pain and of course it set of one the worse POTS bouts I've ever had , sicking up everywhere, sweating like a river , breathless, grey , unable to eat , drink, sleep, headaches, blurred vision and angina ..............and NO I will not be doing it again , trying to get to the loo when the pain is at level 11 out of 10 and your so stiff and want to be sick with every step is something I dont want to repeat .......famous last words Anyhow ................all's well in the household again , unless you take onto account the wall thats been ripped half down by hubby dearest and the HUGE flying ants nest he found in it ...........and YES, men with many disabilities can still run fast if they have to ! ! ! ! ! Take care ..................willows.

Hello all well the 4th of July will be a day to remember in our house from now onwards !!!! As some of you may be aware I've been having big worries about my son Mike , who's now just over 17 1/2 years old and by the way just finished his first year at college, with what we think will be a pass at the highest level in public services. Anyhow , Mike had to get a blood test done yesterday as he's been showing more and more signs of POTS again such as : He has so much leg pain now at times he wishes he could get rid of them both. He finds it hard to walk any distance , especially from the bus station to college in the mornings , which almost finishes him off by the time he's actually got there. He cant get up hills very well ( we live in a village full of hills ) Gets excessively tired very quickly , almost like someone 'pulled his mains plug' ( dont we know that feeling well ) Has headaches 'out of the blue' almost once if not twice a week '. He's had the most horrendous bowel problems with such awful contractions he's been known to almost pass out with the pain ,and this has gone on since he was just 7-8 years old , poor lad. Nasty digestion problems (with coughing up blood at times ) Short term memory problems with lack of concentration which is making it harder at college, but having said this both Mark and I have always supported Mike in his work and helped him to go over things , checking he's put things down correctly etc, which is probably why it now appears he's the only one to not only finish the course ( of over 50 who started ) but he's also getting a distinction pass...............are we proud of this lad or what Mike also has sleep problems. That bleeding under the skin I have which begins with P ...something ??? He has days when he feels 'strange , looks like' death warmed up ' and you can see he's just not well , but he cannot tell you what it is thats wrong , all he keeps saying is he doesn't feel right ( and doesn't look it either ) So Mike and I went to my doctors yesterday to get thses blood tests , my local doctors who look after me are getting worried about Mike now and have managed to find a doctor who specialising in POTS in Torbay ( in Devon UK )and had already arranged for Mike to me seen by this person , so in the meantime they decided to do a few blood tests to rule out anything else before hand . Mike went into the office and sat on the chair , he had said to me in the morning and then about an hour before this that he was feeling' a bit off today ' and instead of sorting out his lounge when we had finished this ( tidy and cleaning it when we got home ) he was going to lay down and have a rest for a couple of hours ................an alarm bell rang in my head ........... I looked at Mike and he did look a bit more washed out than he had when we left the house that morning So nattering away to the male nurse , Mike then said as he was about to take blood 'I m really not feeling to good' the nurse suggested that Mike lay on the bed and have his bloods done , so he did this and all seems fine , bloods where taken and Mike was still nattering to us both . I collected my stick and bag from the chair Mike had been sitting in as Mike slowly sat up , then he slowly stood up to go .... as he turned to look at me his face seemed to disappear ............all I could see looking back at me was a white face with two eyes ! So grabbing Mike by the arm I sat him in the big chair and asked him if he was OK , by this time the nurse had seem his face and asked the same , Mike said fine , the nurse asked me if Mike had problems with having blood taken , which I knew he didnt have , he's had so much taken over the past 17 years when he's been very ill that its just a piece of cake to him and no worries...................and while we where saying this Mike crashed ....................he started to shake, twitch and then fell forwards , luckily as nurse was on one side and I was on the other we managed to support him . Mike now dripping sweat like he's been in a rain shower and was unconscious , I had to leave the nurse and get assistance from the office staff , one went to get mark who was in the car outside , he said as soon as he saw her coming he thought is either Mike had a turn , me hit the floor or both of us !!!! Another member of the office staff came in and then another nurse , who on seeing Mike still out helped put him to the floor, feeling him now soaked with sweat , white as a sheet , still unconscious ( 5 minutes now and counting ) she called the doctor , a lovely lady doctor came in and couldnt find a pulse at first ..............called for oxygen and pillows for Mikes head and feet . Doc then managed to find a pulse which was very slow and weak ( at about 45 ) so she called for an ambulance ( 999) by now we had 2 nurses, 1 office staff, 1 doctor and Mark and I in the room with Mike ..............and he's still out at 8 minutes and counting . You could hear the ambulance coming from about a mile away and it was now that the Doctor so concerned with Mikes pulse and low hear rate that she made one of the nurses get the resuscitation unit 'just in case'. By the time the ambulance arrived Mike had now been out cold for around 20 minutes and was just starting to come back , with 3 ambulance men in the room , 2 nurses, 2 office staff , 1 doctor , Mark and I still in this small room little space was left for Mike to lay out , all 6 foot of him and you couldnt have squeezed a cat in if your wanted to to !!!!!! So with Mike hooked to heart monitors, drips ,oxygen and BP monitors we fought our way out of the Doctors rooms and to Derrifords hospital where after a 15 minute drive we arrived and Mikes pulse was still only 40 beats a minute and still dropping below and setting all the alarms off !!! So , guess what ????????? After all this time of Mike being 'out cold' still looking unwell , still having such a low pulse rate and sweaty etc you will not believe this one ................... I explained to the staff nurse what POTS is and that Mike is going to see a specialist as it it so rare in Devon etc ( took me about 15-20 mins to get it all over to her ) the staff nurse was very concerned as Mike was still pale and you could see he was unwell ...............she went and got a doctor , who unbeknown to him I watched as he looked POTS up on the net and sat reading about it ...............he then came to us and begin to explain that he knew all about POTS ( OMG what a liar) he explained that 89% of all people who get POTS get well .....................er , sorry I said could you repeat that and explain !!!!!!!!! He then said that in clinical trials he had learnt about ( er , what sight was this I wondered ) 89 % of all people who had POTS especially young people of Mikes age who had showed any small signs of this condition , became well within a year or more and had no other signs from then onwards ............................oooooooooooops may be this Doctor should have actually read Mikes notes in which a letter from our doctor had been enclosed which clearly said quote' MIKE HAD BEEN SHOWING SIGNS OF POTS NOW FOR OVER 4 YEARS . This doctor did not impress the now more awake Mike , Mark or myself with his stupid explanation of POTS and how it effects you , he'd of done better to of just got us all a cup of coffee and washed the floors than made out he had any understanding of POTS , he actually made himself look a right 'fool ' Mike , like both Mark and I where not impressed and at this time Mike asked if he could go home as he didnt want to stay in a hospital that had no understanding of what is possibly wrong with him and of course this wonderful doctor said yes. Mike , who was still laying on a hospital trolley had the drip taken out of his hand and then promptly started to crash again ........................ at which point Mark sat him upright and we both started to talk to him , got him a very cold drink of water and he got the colour back into his face and body once more. 15 minutes later we got out of the hospital , quite honestly if Mike had been unwell again last night I would of refused to have him admitted to Derriford in Plymouth , but kicked up a huge fuss until he'd been taken to Torbay hospital up the coast from us for help . Both mark and I knew that if Mike was taken into Derriford he'd get no help at all , and we where right , what makes us mad is the fact that this so called Doctor who came and told us these facts and numbers had been sitting reading this off the net some 2-3 minutes before he came to see us , so much for doctors training and expertise . Mikes OK now , a bit tired , look pale and still not 100% himself , but at least at home if he does have another crash , both mark and I have 1000% more POTS knowledge than the local NHS hospital has and we actually know how to use it . Willows.

Hello all , Yes I to have to concentrate at time in swallowing , its almost as if I've forgotten how to .............. which of course is utter nonsense as its something we all do without thinking , but think I have to when suddenly I find 'I cant get food to go down my throat' and yes, I to choke , tears streaming down my face and coughing etc. This then in turn 'kicks off' my voice loss , as I've said before in another post , I sound rather like a teenage boy going through puberty when this happens most alarming and disconcerting for me .................yet most amusing for all around me especially hubby who has now taken to speaking in the same low, gruff voice with high pitched squeaks in it . But he claims in talking like this he is helping me to feel less conspicuous , after all if we are both talking like lunatics it doesn't sound quite so strange ............................mmmmmmmmmmmmmm, still thinking about that one ! Anyhow, I've found that with the chocking ( especially in public) just concentrate on what your doing , dont give a monkeys about the people around you looking at you . I close my eye's so I cant see any stupid people staring at me when I do this , which helps no end. So if hubby's with me and I go into one of my 'chocking to death spasms' as we call them now! I try not to swallow whats in my mouth ,but cough it up into a napkin and chuck it , then have a drink of COLD water or even better I've found that a COLD fizzy drink slowly sipped and swallowed over a period of 2 -3 minutes , the bubbles almost massage the bits in my throat that seem to cause the problems and the coldness , is I've managed to scratch my throat is heaven ! Another thing I do if I'm having a really bad day of choking and my voice going up and down is to eat ice -cream, somehow the coldness of the stuff helps me to eat 'normal foods ' in between , but having said that you will possibly look a bit strange if whilst in a restaurant you are eating pizza with spoons of ice cream in between each mouthful ...........or even better as I've done recently , ice cream between forkfuls of cod and chips !!! I did get some rather strange looks I'm having a speak therapist over to my home next Wednesday to help me with my voice dropping off and hopefully my swallowing problems as well . I've now had my throat checked out and my swallowing mechanism at the hospital , talk about a room full of specialists !!!!! I must have had at least 8 people all crammed into this x-ray unit while I swallowed various liquids, semi-solids and half -solids. The problem was that all this was done at 9 am in the morning and as I explained to them all 'its as the day goes on that my swallowing and voice problems start , at 9 am in the morning , unless I get VERY stressed out I can cope ' I do hope that you can get some help Jbrain00 it is a worry problem , but at least you now know your not alone . Keep your chin up kind regards. Willows.

Hello Rachel. I to have blurred vision that comes and goes. I normally have to wear glasses for reading now that I'm in my 50 's , but then they found that I had problems with my sight being blurred when I once sat in a cinema and realised that the film was not in focus , so now I have 2 sets of glasses. About 5-6 months ago I noticed that when I have a real bad 'pots' day my vision is just all over the place ..........I cannot lay in bed as I used to and watch Dvds because I cannot focus on them , I cannot read because even with glasses on I cannot focus either ..................sometimes it just comes on 'out of the blue' sometimes when I get up in the mornings for the first hour or so I'm all fuzzy and blurred. And yes, I do have dry eyes at times , along with dry nose and dry mouth , my mouth can become so bad that I cannot swallow and thats just horrible. So the answer to my problem has been eye drops, nose gel and a synthetic saliva ..............OMG more things to add to my never ending drugs list . I do wish someone would tell me why I get this awful blurred vision though , by the way my eyes aren't always Dry when my vision is playing up , so that one can be knocked on the head as it isn't just the dry eye that does it . Ami ............still alive and biting the ankles of the world .

Well I've had lots of tests done now with my ENT specialist and he thinks its something very unusual indeed . He's been looking down my throat at my vocal cords just about everytime I go and see him , which is about four times since I first spoke of this problem. He cannot understand why I loose my voice so often , for so long , year after year (6 weeks at a time is normal for me now ) after having more test last week he has now suggested that a voice therapist comes out to me towards the end of the day to hear me talking and **** the situation , to see if this will help . I've noticed quite recently that my voice just disappears if I'm stressed , like a few days ago I had to speak to someone on the phone and I got very angry with them .................my voice just started to disappear and was up and down like a yo-yo for about an hour or more afterwards. I liken my voice to a cross between a 14 year old lad going through that terrible voice breaking stage and a man who is trying to speak in a woman's voice !!!!! very strange indeed. My ENT specialist has said that I have a problem , but as yet he cannot say what it is .......................mmmmmmm, I seem to remember a very eminent doctor saying exactly the same thing to me about 35 years ago in The National Hospital in London ....................here we go again I feel . Willows and her magical squeaking voice