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Hello everybody, I've come back to let you know what happened at the doc. appointment. Sorry it took so long - my computer has been broken for weeks & weeks. Basically, the doctor checked my girl's b.p. laying and then standing for a minute. Feet didn't have time to change colour or anything. The doc. said she seems normal for her age and lots of kids don't like sport etc. That's fair enough. The doctor did say if it gets worse/carries on, because it's such a complicated matter, my daughter will have to be referred to a paediatric cardiologist. So, at this point, I'm just keeping my fingers crossed my girl outgrows whatever is happening. :-) She has a female teacher this year, who might be more understanding if my girl can't do certain 'sporty' things... so, I'm leaving the matter at the moment (I don't want to encourage my girl to think she's 'sick'. It's a bit of a tightrope!) but if my daughter tells me she's gotten in trouble during sport, I will contact the teacher without my girl's knowledge and tell her about the issue. So, that is what happened. I'll let you know of any updates. Hopefully I can let you know at the end of the year that my girl has stopped having the problems! I'm not going to bury my head in the sand though, don't worry. Take good care everybody :-)

Thank you all very much for your responses :-) I appreciate the link and description of things that should be done for diagnosis. Sorry to read you have been unwell with POTS for so long bananas, and sorry for your daughter too Robin *hugs* I'm glad your daughter was finally diagnosed, even though it took a long time. I am pleased to read that what's happening to my daughter might be normal in a way, because of her age. Perhaps my girl will outgrow whatever is going on. I suppose if it's going to get worse like my problems have, there's not too much that can be done about it anyway. Just got to make sure she isn't mistreated by teachers at school or anything if she can't do certain things. Seeing the doctor in a few days. I'll come back to let you know what the doc. said :-) Take good care and thanks again!

Hello everybody, I am just writing with a few further questions... in less than a week we go to see the G.P about my daughter's symptoms. She is 8 years old. I've been diagnosed with severe P.O.T.S myself (I'm 29) but had O.I symptoms since I was younger than my girl is now. Today I did a quick check of my daughter's stats again before we go to the doc. The results were: Sitting: B.P 93/54 Heart Rate: 83 Standing 1 minute: B.P 90/48 Heart Rate: 120 (+37 bpm from sitting) Standing 3 minutes: B.P 98/66 Heart Rate: 128 (+45 bpm from sitting) At this point my daughter said her feet were itchy, she felt very hot in the face & nauseous. She really wanted to sit down. Her feet had turned the usual purply/red with yellowy blotches. It has warmed up even more here in NZ now, and I am struggling a lot with symptoms. Had a severe 'attack' on Sunday. My girl seems to be pretty-much the same as the other 'test' I did to check on her, which is good news - she is however not going out in the direct sun, and spending her days around the house in only her underwear. Basically, I am prepared for the G.P to say not to worry about this. *Very* little is known here in N.Z about POTS. My husband thinks our girl should go straight to have the TTT which I am apprehensive about. I think it would be very scary for my daughter. So, here are some questions: 1) Do children even take tilt table tests - as in, are they even a helpful thing to do with children who are only 8 years old? 2) Is this kind of thing possibly normal for a child (the purply/red feet with yellow blotches and the heart rate issue etc)? I know when my husband stands up his heart rate only increases by 10 beats per minute, and his feet do not change colour - but I don't know if it's different for children. 3) If the doctor says not to worry, do you think it's reasonable to let the issue go, because my daughter only has difficulty with some things at school (running, standing - especially out in the sun, doing 'jump jam' aerobics where there's arm lifting etc) I guess I want to be mentally prepared for the GP appointment, and because I know there are some people on here with children who are diagnosed with POTS - I'm just seeking some advice about what's 'normal' and what is not. I guess it's also hard for me to imagine what 'normal' is because I don't think I've ever felt it myself. I don't want to let my daughter down if she's in need of help, but I also don't want to push an issue that shouldn't be pushed. Thank you in advance. If anybody could let me know the path that was taken to check if their child had POTS, it would be much appreciated as well.

Hello Lieze :-) I'm sorry you're going through such a scary time. I too was terrified for a while before (and even after) diagnosis. My body just seemed to be completely out of control and I worried it was going to kill me, basically. After a while I realised I had no choice but to 'accept' what was happening. That was scary in itself! But, in the long run I think you have no choice. The symptoms will still happen, whether you're living in abject fear or not. I chose to try really hard and let go of the fear, because if anything it would probably help matters. I reminded myself a lot during those times that this stuff had happened before, and I still lived. So, if it's something familiar to me, I just ride it out as best I can - call a family member for help if I really need it. If something new happens and I'm stuck with no help, I would still call an ambulance though. I had to do that maybe a couple of months ago when nobody could come to help me and I had this new kind of nerve pain. Turned out I had a raging fever by the time the ambulance got here and I was in a pretty abysmal state. Wishing you all the best Lieze :-) I think it might just take time for you to come to terms with the illness. It is unpredicatable and sometimes truly awful. It is possible to not be so scared of it though. p.s. distraction is a great tool, I agree!

Hello autumn, I am on florinef. I started taking 1/4 tablet every morning, but for a while now I've been on 1/2 a tablet per day (.05) I do think the florinef has possibly helped me stop having adrenal 'attacks' all the time. My blood pressure used to drop momentarily when I went more upright, but then go slightly high after my heart revved right up (at it's worst the specialist recorded it at 170bpm just from sitting up on the bed with my legs straight out in front of me). Like others, this can change though - just recently I've become very fainty, and can actually record a drop in blood pressure when I stand - whereas before, the drop happened too fast and the only thing that was recorded was the slight b.p rise, and dramatically increased heart rate - except for when I got the TTT and had the continuous blood pressure monitoring. Weight gain has not been an issue for me with this drug. I've lost 27 kilos (nearly 60 pounds I think) since I got so sick and continue to lose weight (started off overweight though). My potassium levels are checked via blood test quite regularly. If anything, I think the florinef has helped my heart not to go so nuts all the time. Hope this might help Take good care I wish you all the best!

Hello Persephone :-) I go out in a wheelchair because very soon after walking I get vertigo, feel nauseous, and my body 'tells' me to lay down. Only recently since I've been able to go out in the wheelchair sometimes and not feel really sick, have I been able to self-propel a little. I can do it for a minute or two (with tiny breaks for catching my breath)on a flat surface mostly in a straight line. Afterwards I'm exhausted. I do it because I want to try and build up my strength. Self-propelling a wheelchair is a heap of hard work as far as my experience, and yes I think walking is easier - but only if you can do it, of course. Maybe some people just can't be upright but are quite fit & strong aside from that? Or maybe they just push themselves extremely hard/have heaps of breaks. I don't know. Take good care p.s. Just read your other post - I too, will never drive now because of the POTS. I have had out-of-the-blue vertigo attacks for years (My lazy ex-GP told me I had 'visual migraine' before I got so ill) and if I was driving and it happened I'm 100% sure I'd have a car crash.

Can you add it to food?

Hello Lieze, For me, laying really flat was not nice for me when I was having a severe attack - unless I was losing all the feeling in my body, in which case once my husband & Mum laid me flat & put my legs up on a chair - and it really helped :-) If having a bad attack without that loss of feeling, then it was best for me to be propped up a bit on pillows if possible, on my side a bit. Ideally, legs up a bit on pillows as well. Hope that makes sense! Laying flat would often make me feel like I was drowning - and I still can't lay flat on my back it does some weird thing to my breathing. Possibly to do with my BP lowering even more. I wish you all the best!

Hello gift, I am very sorry to read about the tough time you are going through. I also had to walk and pick up my daughter from school - over the course of 2009 it became more and more difficult, and I actually ended up collapsing/'floating into the sky' once and my daughter & I were in a somewhat risky situation. I also had less scary collapses many times. It's not good or sensible to be out walking with young kids if you are not physically up to it. In my case, I'm pretty sure pushing myself so hard all the time to do such difficult stuff really did contribute to the crash I had (health-wise). Perhaps you could explain to your husband that it's not a matter of what you can push yourself to your absolute limit to do on any given day - because this can lead to a general decline of your health and you might end up severely incapacitated and unable to even feed the kids, yourself, or get to the toilet etc. I know it's *so* difficult because before I had my bad crash I just had to get on with stuff, because nobody around me understood what was happening in my body, and how it felt to have to do stuff which felt near impossible. Sometimes people only make changes to help once you do get terribly sick and there's no other choice. Perhaps you could even let your husband see what has been written in the thread though... prevention is better than cure, and all that. About the wheelchair - I understand if you can't wheel yourself. I am only just able to wheel myself on a flat surface, for a very short while. The rest of the time someone has to push me. Here's hoping you can find a solution that helps preserve your precious energy :-) Best wishes!

I'm so sorry those of you who could not be with your children during the TTT. My husband mentioned yesterday that my girl (8 years old) might need the TTT as well because of the symptoms she's showing, but I think the whole thing would be very upsetting to her - let alone if her Dad and/I couldn't be in the room with her during the test. Goodness gracious. I would also be feeling like tearing the door down! kcmom - definitely sounds like dysautonomia to me. I am so glad you're getting some help for your son, and I really hope he starts to feel a bit better with treatment. Take good care :-)

Hello Persephone, Unfortunately I don't have any answers about why this happens - just writing to say something similar happens to me too. I go through periods of being unable to keep myself from sleeping each afternoon. It's not a 'nice' sleep either; it's like a sleep where my body shuts down but I can often hear the entire time. Can't move though. It takes me a long time of struggling with my body to be able to move, and sometimes I can feel myself becoming more & more dehydrated but I'm stuck. Hopefully some other people here might have some helpful answers/ideas for you! All the very best :-)

Hello firewatcher, I can really relate to some things you write. My mother was convinced I had asthma since I was a baby, but the doctors kept telling her I didn't have it - but when I was a toddler I was diagnosed with bad asthma (after an attack & being rushed to the hospital), and spent until I was 15 on a cocktail of medicines for the asthma... and continued to need the 2 inhalers throughout my adult life - until I was in hospital so much around the beginning of this year, and I kept being told by doctor after doctor 'You don't have asthma'. I couldn't believe it - and my breathing problems have been bad the past year. It's just not asthma, apparently. That said, the inhalers had stopped working for my breathing problems in the year before I became so ill, so I guess it's possible I *did* have asthma but it magically went into remission, only to be replaced by the P.O.T.S breathing difficulties. Either that, or because whenever I had an asthma attack when I was younger, I would sit down - maybe that was the real cure for the breathing difficulties, not the inhaler. When my P.O.T.S symptoms got so bad that I had them even laying flat, that might explain why the inhalers didn't 'work' any more. My daughter said that when she was running for cross country practise, it felt like a 'gust of cold air' had rushed into her mouth, and she couldn't breathe properly. I *think* I know what she means by that. I am very glad your sons don't show any signs of O.I at this stage firewatcher. My hope for you is that they grow to be strong and healthy, and that your older son's headaches & bendiness don't turn out to be indicative of anything more. Either way though, it sounds like you're very onto it, which is good for any child who might be struggling with a medical issue :-) I will try my very best for my daughter - have no idea what the doctor might say, but I'll keep you posted. We'll be seeing the doc. before mid January. I have a couple of photos I will take to show the doc. as well (purply/red feet). Also, she can 'test' my girl in her office. I think it will be pretty obvious everything is not 100% working correctly in my daughter's body. Take good care!

Hello Julie and firewatcher, Thank you both very much for your responses. In answer to your questions: My girl is 8 years old now. I myself had symptoms of OI from at least age 6. My daughter's feet have been turning purply/red for at least a couple of years now that I can remember - possibly it's gotten a bit worse but I'm not 100% sure on that. My girl has not had any recent growth spurt (she's been the same height for about 4/5 months now, following a previous growth spurt) and she isn't showing any signs of early puberty at all. I think she's in about the 75th-80th percentile for height, and about the 30th percentile for weight based on her height - or something like that. She's not underweight but she's definitely nowhere near overweight, if you know what I mean. I really feel for you Julie. I'm so sorry things got that bad for you and your son before the help arrived. Because of what you've both written, I went ahead and made an appointment for my daughter to see the G.P in January. I will show the G.P the data from the 'test' I did here at home. I was worried about my girl freaking out because I've been terribly ill, and if she thought she had the same thing as me she might be distraught. When I did the 'test' on her she kinda figured out what I was doing though (she's pretty onto it!) so she started asking questions and I explained to her that we might need to go and see the doctor to get a note so she doesn't have to do things at school that make her feel very sick. She seems ok with that, so since she's alright and also because you both seem to think the data suggests she might have P.O.T.S - I will definitely try and get some help for my girl. I think the note is very important because she will start the new school year at the beginning of February and it will still be summer. I don't want her being tortured or treated badly by the teachers during sport times if she can't do certain things. I was also treated *horribly* by teachers etc at school, firewatcher. They often acted like I wanted to skive off sport - though I was a very active girl in general, but some things I simply couldn't do. Gosh. Definitely don't want my daughter to go through that kind of situation throughout her school years. I'll let you know what happens :-) Take good care

Hello, I am just seeking some information and perhaps a little advice. I was diagnosed with severe P.O.T.S at the beginning of this year - but I've had symptoms of orthostatic intolerance since as far back as I can remember. Started fainting upon standing at about 9 years old - and then told I had a 'postural drop' when I was in hospital at age 15, and to get up slowly every time I stood. So, it's been something I seem to have lived my whole life with to some extent. I don't know why though - I've been told I have 'idiopathic P.O.T.S' but I haven't had any kind of testing really, aside from the tilt table test. I had varicose veins in my legs from a very young age, but I don't think I could possibly have E.D.S or anything as I am not 'bendy' at all. Anyway, I have a daughter who is 8 years old. Her feet turn purply/red whenever she stands. Also her hands - but to a lesser extent. When she was sick a couple of months ago it got even worse though - her feet went bubble-gum purple, and when 'pressure' went on parts of her legs as she was having a cool shower, the part where the pressure had been turned yellow - and wouldn't shift. I almost called the ambulance right then & there, but we took her to the local accident & medical clinic instead and whilst there her feet stayed purple - even when laying down on the bed at the doctor. It was horrible to see. I kept rubbing her feet & legs to try and change the colour back. Anyway, it is summer here now. I found out my daughter has been yelled at at school for not standing playing outfield during sport in the hot sun. She says her body makes her sit down, and she's desperate for water. The teacher has forced her to stand up and not let her get any water on a few occasions. This worries me as I remember when I was even younger than my daughter, I couldn't stand up still. She also struggles immensely to run in the cross country race and lead-up practises. I have *never* been able to run - though I went through a stage where I 'power walked' at least 3 hours/day. Walking was never a problem for me when I was younger. My daughter is also an extremely active girl and tending towards being underweight if anything - why can she not do these specific 'sporty' things? So, today I checked her blood pressure & heart rate. These are the results of the 'test': Sitting on the ground: B.P 92/58 Heart Rate: 83 Standing 1 minute: B.P 86/54 Heart Rate: 119 (+36 bpm from sitting) Standing 4 minutes (feet well & truly purply/red): B.P 93/61 Heart Rate: 130 (+47 bpm from sitting) Sitting again after about 30 seconds (feet colour back to normal): B.P 91/55 Heart Rate: 89 ( -41 bpm from standing about 30 seconds prior) Technically, this constitutes P.O.T.S, right? Now, my daughter *is* very active which I am pleased about. However, I don't want her being forced to stand out in the glaring sun at school or running in the cross country if her body is telling her 'stop!!!'. Has anybody else noticed the same things happening to their child as happened to them as a kid? It is beginning to dawn on me that I seem to have passed *something* down to my daughter - but I'm not 100% sure what it actually is. I don't know why I had symptoms from such a young age, and my health has only deteriorated over the years. Does this sound like normal 'P.O.T.S' to you? I don't know. I wonder if there's some kind of underlying cause I don't know about, which might have been passed down to my daughter. I do have the P.O.T.S with 'adrenal' problems (attacks), which I read might be genetic somehow. Anyway, do people here think I should talk to the doctor about my daughter - even though she seems to be having difficulties with just a couple of things at school? I guess I don't want to jump the gun or anything. Is it possible what's happening to my daughter is normal 'kid' stuff? Thank you for any help/advice. I feel a bit sad about my daughter showing symptoms like this. Take good care

Hello everybody, I am new here. 29 years old, female. Had symptoms of orthostatic intolerance since pretty-much as far back as I can remember (early childhood). Towards the end of last year I got some mystery virus and suddenly had a very overactive thyroid (antibodies showed up too) but that quickly reversed with the antithyroid medication - 'too quickly' according to specialists. Aside from my levels improving I became bed-bound and was having 'attacks' all the time... finally diagnosed with severe POTS and have since realised my adrenal gland was throwing a party which was linked with the 'attacks'. I am on florinef now, things have stabilised but I'm still pretty disabled by this illness. My worst symptoms is breathing difficulties. Feels like I'm a puffed up balloon and my muscles all around my ribs feel 'rigid'. It's like my whole chest area has turned brittle and I can't get enough air *out*. I combat this all the time by making sure I breathe out more (slowly), and try to breathe in a little. Makes things more bearable. Anyway, I am finally going to have the echocardiogram for my heart. I don't know if they should do that when I'm standing/sitting with my legs down though? They probably won't bother. Also, I see my new G.P on Tuesday. I keep wondering about possible underlying diagnoses. Why do I have POTS? I've looked into EDS a little bit but I am not 'bendy' at all. I did have horrible varicose veins from a very young age though - despite never being overweight or anything as a kid. Most embarrassing. Could this mean anything? I don't think I fit the criteria for EDS at all aside from that one thing. Anyway, I was wondering about organising a lung function test because of my breathing difficulties which are the worst thing for me. Any ideas of any particular types of specialists I should see? One more question - recently when I was in hospital they noticed my pupils were different sizes. Is that a normal part of POTS? Could that be why I have problems with light? Thanks for any help! Like I wrote, I have a new G.P now and she seems pretty onto it. I would like to take the opportunity to perhaps have her back-up and to be checked out properly.... I don't like being disabled like this, but always in the back of my head knowing very very few tests have been performed, and I have only seen a specialist for the thyroid issue and one specialist who got me diagnosed with POTS but then didn't know anything about how to actually *treat* it, so he sent me back to the care of my old G.P. Take care