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I've neber sued a hospital before, but I had a similar experience where I went to the ER with chest pain, palpatations and shortness of breath, and as per my doctors instructions I was supposed to go the the nearest hospital so the episode could be caught on an ECG (EKG). The triage nurse turned me away as I looked 'healthy'. I went straight to my GP's surgery who did an ECG, and it turned out to be abnormal - he was furious with the hospital - and was going to write to them. I have no idea what the outcome was though.

I assure you this is not a problem restricted to females. I am a 28 yo male, and have exactly the same problem. I've discussed it with my neurologist, and she says that the autonomic nervous system plays a large part in that 'role' of the body, and it's apparently not uncommon to have this, and also to actually wet yourself, thankfully that hasn't happened to me, and also 'dribbling'.

Yeah I know what you mean - I am 28, my grandparents are in their late 70's and have a far more active life than I do. I wouldn't be able to keep up with them if I tried.

I find that Xanax, Tamaze and Stilnox have no effect on me - I feel like I've a couple of drinks once I take them, but they never put me to sleep. The only one that worked for me was Immovane (sp?). I think it's a pretty powerful one, and can you believe it has a picture on the packet of a cute little teddy bear sleeping... I have always had problems sleeping, and have tried everything from warm milk, warm bath, no TV or reading before bed, camomile tea, Valerian etc, none of them made any significant improvement for me. I tend not to take sleeping pills now, as I always feel hung-over the next morning, and find that I feel just as groggy if I take them as I would if I only slept for a couple of hours. I hope you can find a solution to your sleep problems - if you do, please let me know... All the best..

I was told by my neurologist that it helps to keep the blood in the upper part of your body, rather than pooling in the legs and gut. She never mentioned anything about Mestinon increasing blood volume - she prescribed Florinef and Sodium Chloride for that.

Can someone explain to me what a surge is? I tend to get a 'thing' everyday around 3pm and 9pm - it's almost identical to a panic attack in most ways - racing heart, difficulty breathing, a 'wired' feeling, followed by a faint feeling - is that a 'surge', or a 'panic attack'? Please excuse my ignorance....

Can you believe this? As well as having POTS, I have just been dx with arthritis - they are doing tests to see what type it is and what to expect - - - I've had numbness in my hands off and on for weeks now, and have noticed when they aren't numb, my fingers are very saw - and today, I was in agony - it felt like there were needles in my hands and all my knuckles on my hands were red and swollen - I thought I better go and see the doctor to at least get something for the pain - he took one look and said, it's definately arthritis - and I have to have blood tests done to see what type it is, and doesn't know if it will get better or worse. He has given me some Celebrex to ease the swelling - which has worked a little (well I can type now), earlier in the day I couldn't even write more than a couple of words (and then it looked like chicken scratch), let alone use a mouse. I think God must be trying to stop me playing the pipes! I can't stand for long, and now the pain in my hands.... I have a friend staying with me over Christmas, and a similar thing happened to him - however it was in his feet, and quickly progressed, within a year he was generally in a wheelchair most of the time, and now is crippled with pain most of the time, and of course has had to quit work. He says that after he got the pain in his feet, it was almost overnight that he started to get pain in all his joints. So, naturally I worry - And then I have the results of all the blood work and what not from the neurologist to look forward to next month - Anyway, I'm keeping my chin up for now - this pain may not be perminant, and I'm probably over-reacting, but if you could see my hands at the moment with all the swollen knuckles - they look like they belong to a 70 yo not me - and all pretty much overnight... Anyhow, I'm going to bed now, if it can come on overnight - maybe it'll be gone in the morning... Just venting I guess - I'm so tired of having all of these bits and pieces that don't work right!

Thanks everyone, your posts are insightful and resourceful. For myself, I am not worried too mcuh about how the POTS came about, although if it was from these medications, I would like to advise the correct people to at least avoid it happening to someone else. Yes, I do agree that the treatment I received during that time was barbaric, however can appreciate the fact that all of a sudden these drugs became available and were supposed to treat my problems, unfortnately that wasn't the case, and to my understanding almost 20 years on, the long term effect of these medications is unknown. They were all very strong psychotropic drugs, and now I know were not the right treatment - but I was only 12 y.o. I couldn't argue too much about it. For some reason I can see a possible link - if anything not to give minors such heavy duty medications (of course unless absolutely needed - in my case they weren't, they were just new and exciting). The results of my neuro-pshycological testing will be forwarded to my neurologist - whether or not she takes the time to read and consider it is another matter.... Anyway for me, the damage has been done - I have POTS - if it is reversabl GREAT! If not, I can only try and make my voice heard -

Hi Guys and Girls, I am fluent in English, Spanish, Chinese (Mandarin), Chinese (Cantonese) and New Zealand Maori. Howver, especially in Japanese and Chinese, I cannot find any resourses on the web at all for POTS. I understand that POTS is very prevelant in Western countires, however, would think the same info would be available to non-English speaking patients. Of course I have spoken to several people in Japan, Hong Kong, New Zealand and Mainland China, and noone has heard of POTS. What can we do to spread the word? If the moderators etc are willing, I am more than willing to translate the brochures into these languages free to charge, if it will be of any benefit to sufferers in other countries. Please get in contact with me if so willing to the email address or PM supplied on my profile. As DINET is such a great support to me, statistically China at least would have far more sufferers of this disease than all Englisg speaking countries put together, so would be more than willing to do my best to spead the word. I am qualified as a translator in both Japanese and Chinese (Cantonese), and Chinese (Mandarin) and Spanish I learnt out of pure need, and am fully capable of translating the dinet pages into these languages, however NZ Maori may be an issue, as I cannot see scope in the language to fullly describe POTS and it's symptoms adequetly, and feel there is not a high demand for this info to be published in the Maori Language. Anyway, I just want to make sure we look after our fellow friends in non-English speaking countries. If anyone who is in charge of this website feels the same, I would greatly value your feedback. Regards, Daniel ダニエル 丹尼爾

After having a session with my pschycologist yesterday, and discussing mainly the impact that POTS is having on my life, he was interested to know exactly how it started. A little bit of history. I was diagnosed at age 12 with severe depression, and was put on Prozac and Imovane (Sleeping Pills), which I continued to take until I was 20. I was also put on other nasty medications like Chlorpromizine and Heliperdol and Cogentin (Spelling on all of those). My pshyc tells me that your brain doens't fully develop until around age 25, where all the wiring is pretty much locked in place (his words). He wonders if being prescribed a high dose of anti-depressants, along with sleeping pills and psycho-tropic drugs could have somehow damaged the 'wiring'. I don't know if any research has been done on this? My memories of being a teenager are very, very foggy, and when I think back to that time, I generally can't tell if the memories I have a real, imagined or a dream. It was a very unfortunate time, and the doctors all of a sudden had all of these fantastic new drugs that were supposed to make things better - unfortunately, I got stuck in a trap, and as I was underage, my parents had the say in what I was prescribed, and the medications and doses just kept getting stronger and stronger. My pshyc thinks it's a miracle that I am now 28 and farily 'normal' considering I was taking such heavy medication at such an important stage in my development. Does anyone have any thoughts on this? I think it is irrelevant now - even if this is a cause for POTS, I think it is too late now to correct it. But you never know, if it is a cause - there may be a cure???!!?

I'm far from an expert on the matter, but my doctor and neurologist don't seem to think that a couple of drinks harmful in anyway, in fact they have both told me, it is great for helping you to relax and unwind - of course be mindful and realise your limits, especially if you have hypovolimia (sp?). If you have read my previous posts, you will know the trouble I got into, even drinking within the guidelines. Apart from my problems - I am an advocate of any treatment, so long as it is legal, and makes you feel better, even if it is only temporary. I know for me, if the night is right, I can almost feel normal - so long as I don't stand too much, but the recovery is much, much, much longer than it used to be, and it doesn't take that much for me to get 'happy'. Well, at least it's a cheap night! My advice, so long as it feels good, and you are not doing anything either legally or morally wrong, go for it! Oh, and I should add, don't wear a kilt and walk through a dark carpark at night - there are some real ______ out there!

I have to agree with all of you! I am not quite sure how long I have had POTS, but it has definately been over 8 years, however was only diagnosed last year. I had a terrible experience only a couple of years ago that was dx as PTSD, as I was working in a small, family run funeral home, which mainly dealt with elder persons who died of natural or near natural causes. Once I was asked to pick a body up from the John Tong Centre on my own (a patholohy lab), and the body was that of an 11 yo girl - I was absolutely horrified that not only could a young child die, but also if you have ever seen a post morum exam, it is very 'thorough'. Although the funeral home I worked for did a lot of funerals for still born children, I had nothing to do with the preperation and funerals for these wee young ones, apart from preparing their coffins and name plates. This 11 yo girl was my first child, and as I had a sister of the same age, I was in shock, "young children that age aren't supposed to die" etc, I kept telling myself. However, unfortunately, it is part and parcel with the job, and you are expected to get over it and go on, howver I couldn't, I fell into a deep depression and was constantly lightheaded and dizzy - I don't know where the PTSD and POTS symptoms overlaped, but I am sure they did. I tried to go back to the job, as I wanted to help people through their grief, and try to give the best and most appropriate service possible. However everytime I went to work and saw a white coffin, I had severe anxiety, and eventually could not continue there. It's a hard job, and I know that it takes it toll on those who work in the industry. I may seem strange, but I am trying to demonstate that PTSD and POTS could overlap in certain circumstances. That was a fairly long time ago as things go and have recently started doing 'transfers' again, part time - where I assist the funeral director in moving the body from the place of death to the funeral home. It's a hard job, and I don't do it often, I'm lucky to get one transfer a week, but I feel I am doing some good and assisting those in their time of need. It is stressful and maybe if someone had POTS and didn't realise it, an episode like I had maybe could bring it one. Although PTSD is totally a psychological disease, whereas, POTS is organic, I am sure that in certain circumstances and in certain people the symptoms could overlap, and would be hard to distinguish from each other. Unless you are faced with a situation like that, you don't know how your body will react. My father used to be a funeral director (has since given it away), and I have seen many people react to different situations very differently. It goes to show that we are all different, and different stressors may have different effects. But, I digress again. From having POTS, I believe that an unusual situation can bring on POTS symptoms. In my opinion, someone who may have a 'soldier's heart' could indeed be suffering from a form of POTS or Dysautonmia, and the stressors involved may have brought on the symptoms. Of course I am not a Doctor. I am speaking from first hand experience. There may be a correlation that no-one has explored as yet....

Yeah - go the Aussie Bear!!! Woops, that should be BEER!

Thanks Nina, I do know that heat intolorence is a symtom of POTS - I guess I was trying to deny it - I don't want all of these symptoms. WHY CAN'T I JUST BE NORMAL? LIKE EVERYONE ELSE??? I DIDN'T WANT THIS! IF I WANTED A DISEASE, I WOULD HAVE WANTED ONE THAT COULD HAVE BEEN TREATED!!!!!! If you read my earlier post you will see I am sliding. Like the Verve song, I feel 'like a cat in a bag, waiting to drown'. This POTS thing, no matter how long you've had it, truly stinks!!!!

Thanks Mighty, I appreciate your comments - however here on the Sunshine Coast in weather like this a fan is like a heater - it is 100% humidity and 40 C - it's a nightmare! A fan does no good in this weather but make you feel hotter. AC is the only answer....

Thanks Guys, Well, It's my own stupid fault for living in a tropical environment - luckily a storm came through and cooled things off a little. I did take my shoes off, but because of the design of my desk I can't but my legs straight out, but I did fill a little chilly bin/esky with some ice (we have an ice machine), and but my feet in it. It seemed like it was burning at first, but the rest of my body felt the relief. My bosses know I have POTS - they even come to the hospital with me! But I can't push the limits - I'm legally entitled to 10 days paid sick leave and so far have taken over 40 days for the financial year. I just met with them, and explained that I am sorry, and would understand if they wanted to hire someone else instead, however, they said they understood my medical condition and have been to the DINET website for some more info, and would hate to lose me. They are willing to accept that I have a disease and can't work as many hours and an 'able bodied' person can. However they will continue to pay me a full time salary, as they feel the work I complete in a 6 hour day is equivelant to someone working twice that time. I think I am pretty lucky for that, and of course am very thankful. As for compression hose, I understand it works, however in the Queensland heat, my doctors have advised me against it, even though it may help the blood to return to were it should be, the extra heat I would have wearing the hose would counter-act the positive effects. In a climate were socks are almost intolerable, I think compression hose is out of the question.... Maybe I should move to Hobart??? I like it there, and the climate is agreeable. And my worst fear - I've had to give up the bagpipes over summer - with this heat, and the standing and blowing like a valsalva excersise... It's just too much, I can't do it. My legs are like balloons, my toes look like little pink pork sausages, and I can bearly catch my breath. Although, on the positive, I have been offered a contract with a Celtic Rock group that need a bagpipe player and are recording their first CD next month. I have and electronic set of pipes that look like the real thing, sound like the real thing, however are easier to control, and can be played sitting down. So, there is a silver lining. Although, for me, nothing makes me prouder than to wear the full pipers uniform with my fellow band members and march on parade, with the memories of my grandfather, and my great-grandfather, and what an honour it is to preserve their heritage and passion for the great highland bagpipe. But I digress, and I'm sorry - for me it is an important part of my life, and something I wish to preserve. Just all these thoughts, and what I am loosing. I hate it, but can accept it (to a fashion!).

Well.... I'm at work today - and it is soooo hot. The air conditioner has broken down - it must be at least 40 C in here. Everyone else here is sweating like pigs - but I'm not for some reason??? Strange??? My vision is awfully blurry, and have a terrible headache, and my legs feel like big balloons just waiting to pop - if I look down at them (I'm wearing shorts), they are all purple and yuk. Anyone else react to heat like this??? And, what can you do to help?? I'm drinking lots and lots of water, and nothing coming out....

I sometimes get an odd sensation from the inside, which makes it hard to breathe and talk, when I take a deep breath there is a bit of a vibration feeling - I have found that if I push down on my sternum with the heel of my hand quite firmly, there is a little cracking/popping sound, and everything goes back to normal - for some reason I think it is only me that has this - I'm putting it down to another design flaw...

I find I get shortness of breath often. Some of the time it is panic related, and other times it is from exertion.

Hi Shivvr, OMG! It sounds like you've been reading my diary! Since I was diagnosed, I've had to give up lots and lots of things, and know what it feels like to not have the energy to hang out with friends etc. I tried to take up things that I can physically do. I used to lift weights everyday, but had a few too many faints at the gym and was banned - and am too scared to go it alone at home. If you're interested in music, maybe try learning an instrument (that's what I did), although it doesn't replace sports etc, it gives you a sense of accomplishment, and something to keep you occupied, and most importantly for me, something to look forward to. I try not to dwell on the fact that I have POTS (even though it effects every area of my life), and concentrate on the things that I can do, and strive to do them well. I really do hope things pick up for you soon.

I can only speak from experience, but have been on countless flights from Australia to the UK (over 24 hours flying), and from here to Hong Kong etc. Apart from the normal dry eyes, nose and skin, I don't notice any difference, although, I make sure I drink plenty of water, and I had a bergomot (sp?) spray, that you spray on your face, and it makes you feel hydrated again, and of course chapstick. I have no idea what the altitude can do to blood pressure... I just take everything I can to make sure I am hydrated, and on long flights, a Xanax, just so I don't feel so restless.

My thoughts are with you also. I know first hand what a strain POTS and it's symptoms can put onto loved ones. It has been a huge hurdle in my relationship also. And many, many times either myself or my partner have wanted to leave the relationship. We have been together for just over 8 years, and now the relationship is going strong, after a lot of talking, counselling and hard work. I wish for you that you and your partner can work through this difficult time together, and come out the other end stronger than ever. Again, my thoughts are with you.

I put on about 25 kgs, after the initial onset of POTS, but have recently been under a lot of pressure and been ill, and have lost about the same in the last 6 weeks.

I know that when I have had MRI's I completely freak out both in the machine and afterwards - I put it down to being such an unnatural thing, and it's so loud and scary in there, and with that plastic cage on your head. I hate them. God knows what they could do to you, with all that magnetic energy being shot around everywhere. I wonder if it has any effect on the metals in your blood at all?

It seems that lots of tests come back normal, even though you know something is wrong. It's like trying to prove to someone that your car won't start - it will always seem to start no problems once someone is there to look at it...