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Kelly

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    http://wellybird@hotmail.co.uk
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    Reading, Photography, Music and making people laugh!!

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  1. Please help, Im still having a really bad time with my POTS and for those of you that live in the UK you'll know how hot it has been over the last few weeks, well it seems to be for me anyway. Im finding it utterly unbearable and dont know what to do. Ive had almost two weeks off work as ive been so ill. Ive sat infront of a fan the entire time and continuously drunk water but there must be a point where i must go back to work and i cant have a fan on me 24/7 or stick my feet in the air as soon as i become overheated, causing me to become faint. Does anyone know of anything i can do/take to help. Ive heard of someone mentioning a medication that can be taken but mr Dr doesnt seem to know anything about it. Kelly x
  2. Thanks everyone, i've ordered some compression tights as the pain is high in my leg, its gone on for days now so hopefully they'll work. Thank you for all your replies x
  3. Thank you for your reply, no it seems that that nothing will help, I have tried to do a bit of exercise around the house but to be honest, Im feeling so grotty at the moment that I have little energy or motivation to do it, which is silly I know, I suppose Im asking for trouble. I will try though!! Thank you x
  4. Hi all, I was just wondering if anyone has had or is having the same problem as me. Im having a bad time with my POTS lately and over the past couple of days my legs have been really aching, in fact they really hurt. I know that us POTSies have blood pooling in the feet put could the pain in my legs be due to blood pooling? Has anyone else had this? The pain seems to be more in my thighs than calfs, which is where i would assume the blood would usually pool. It really really hurts :-( Thanks for any comments and hope the weather isn't making everyone suffer! Kelly xx
  5. hi, i started taking 2.5mg of midodrine three times a day and found it to be of little help. i now have 5mg three times daily and have seen an improvemrnt, since being on this dose my bp hasnt dropped really low at all however, i have found that my herat rate has been really high when i stand (i dont think that that has anything to do with the meds) i also get the goosebumps really bad and tingling in my scalp which drives me nuts, however i would much rather that than be as ill as i was! ive haers that the maximum amount of midodrine you can have is 10mg 3x's a day, so if things dont get much better, discuss upping your dose with your dr. hope it goes ok for you kellz
  6. thanks everyone for your replies, they have been a great help to me, hope you are all ok xx
  7. Hey everyone, im getting really worried, ive been off work and college for 6 months now, as i have been so ill and unable to walk from one end of my house let alone go out to college. so i left college and decided togo back in september and re do the whole year. however, it seems as though im never going to get better, my G.P. thinks that i'll be feeling poorly all sumer as it is so hot and the heat makes my pots really bad. and if i feel the way i feel now i will never be able to go back to college i desperately wish that i could go back to the way i used to be . . . . i know i cant but i can wish!! i really want to get a job and earn some money so my parents dont have to pay for everything for me but im too ill at the moment. how does POTs affect your work lives do you have to work part time because of the illness or do you not work? i just want some advice!! Hope you are all ok kellz x
  8. Lately its been really hot, and its really affecting my POTs. i feel nauseous all of the time, extermely weak, and my orthostatic hypotention feels to me as if it is worse in the heat. my h/r goes up alot and it all makes me feel generally really ill. is this something that anyone else suffers with? i know that POTs patients often have heat intolerance but is this how it makees you feel? Kellz
  9. Hey! :) Thanks for the add!

  10. well i havent got any children so i dont know what your going throught there, but i totally understand about the good and bad days and how its all people want to talk to you about, i used to chat to anyone about anything but now all people ever know what to talk to me about is my illness and people just dont understand, just because they havent heard of POTs they seem to just shut down and you can tell they are not listening!! this website is so helpful as you can talk to people in the same situation! i hope everything goes ok for you and you can get some medication to help Kellz x
  11. i agree, some days i feel ok and think i have enough strength to do things but am worn out for days afterwards, in my opinion its the worst part of POTs - getting yourself excited that you are feeling better then step back a mile - it certainly does trample on your confidence. i find that a cuddle from my friends and family and a few chocolate chip cookies helps, as nothing else seems to!! also when i get a fever of some sort, it always makes my POTs worse. Hope you are feeling better soon and keep your chin up!! kellz x
  12. for POTs patients that suffer with a drop in BP as well as an increase with heartrate, ive heard that alcohol is a bad idea as it thins the blood and lowers the bp, which would cause POTs syptoms to worsen, therefore i dont drink at all . . . . mostly because im so frigtened of fainting and feeling terrible for days! i think its best to ask your doctor whether or not you can drink with your meds and POTs
  13. im afraid i cant help you with the neck pain as i dont suffer from it, however when my bp drops really low i also loose my vision, i can see colours, like your daughter and feel as if the room is spinning, this usually happens just before i pass out, i find that it helps to lay on the floor and put my legs up on a chair to increase my bp quickly . . . ive heard that POTs patients should keep their heads up but this is the only way i find i can raise my bp,to make me feel better Hope the neck pain gets better and she is feeling better soon K x
  14. hi everyone, i just wondered if anyone is having the same problem as me. i first got ill in november 2007 and was diagnosed with POTs in march, and since november, because of my drop in bp and raise of heartrate when i stand, i could stand or walk at all without collapsing. therefore since november i have been in a wheelchair, just so that i could get of the house. i am now taking midodrine but still feel too unsteady on my feet, im alright to walk a little way but if i get hot or walk too much my legs feel like jelly and my heart starts to race. . . . . which then kicks off all of the symptoms, making me feel really bad and have to sit back down, this then puts me back and im ill for days afterewards. i think its just because im so nervous and have lost confidence in myself being able to walk. Does this mean i will always have to go in a wheelchair when i go out? do any of you have to go in wheelchairs because of POTs? hope you are all doing ok, lotsa luv kellz xx
  15. Just wondering how everyone deals with the exhaustion, i have only recently been diagnosed with POTs and am now on 5mg of Midodrine 3 times a day but i am allways exhausted, i feel as though my legs are going to give way, and all i want to do is sleep!! Does anyone else suffer with this? Could it be that i need to change my medication or up the dose? Help!!!!
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