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About katcanny

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  1. Diagnosed 9 months, been through a lot of testing, seeing specialist, allergies to most meds I've tried, still trying to find a medication, trying to keep my full time job,mother of a ten year old boy, from Australia, hospitalised on average every 4-5 weeks.
  2. Hi ?? my son doesn't have POTS but did have thrush as a child in the mouth. Nilstatin is an otalmliquid you put on the tongue it worked wonders for him. Sending well wishes and prayers for you and your daughter
  3. Hi to all the lovely people out there, i am struggling very badly with dizziness and swaying when I'm standing any tips or things that have worked for people I am willing to try anything once I start getting dizzy and sway my anxiety kicks in and then my heart rate goes up it's a double edged sword!
  4. I never had anxiety before POTS! Now I have massive health anxiety due to having reactions to the first couple of medications my specialist had me try. Now I don't want to try any new meds and this is holding me back my specialist prescribed 1mg Valium every night but I am yet to try it he wants me to try it for one month then return to him to see if then I can try a beta blocker without having a panic attack before even taking it!
  5. No results yet I'm hoping to call my gp tomorrow and that the results will be sent to him aswell as I can't see my specialist for three weeks! No I had to sit still for 15 minutes before I had to have my blood taken no talking or movement!
  6. Hi haugr, i haven't started yet I was put on sudafed PE for a month and I'm having withdrawals from it, I can't tolerate even that broke out in a horrible skin rash all over my face and chest and got horrible anxiety from it which I'm slowly feeling better and the rash is clearing up after 3 days of no sudafed. I'm staying at my mums when I trial the propranolol as I have to take it over night I really don't want to even trial it as I'm concerned about breathing problems and my specialist said it could make me worst and drop my blood pressure and make me more dizzy which is what I'm trying to stop. It's been hard for me I have lost a lot I can't work, can't drive, can barely clean my house, I need help looking after my son, it's a good day if I manage to be able to get dressed. I don't want to trial things that make me worst I want to take something that will make me functional! I have only just now had blood tests for auto immune and adrenaline which should have been done months ago! It's ok for the specialists they get a **** load of money and can function while I'm living week to week and may lose my job!
  7. Only taking florinef, have beta blocker haven't started it yet too scared to
  8. Resting/sitting heart rate 59 - 62 walking around 95-100 housework constantly moving up to 118
  9. Hi everyone! i have been to my specialist today and he has decided to try me on propranolol which I am very worried about as I have hypotension and a decent resting heart rate. I had to do blood tests today to check my adrenaline levels not sure what tests were done exactly and I noticed on my paperwork that for diagnosis it was phaeo? Or POTS so after researching because my specialist didn't tell me anything about what he was testing for I am even more scared that I might have a tumour in my adrenal glands. Has anyone else been through this testing before? Or have any information? And any experiences on propranolol or tips would be greatly appreciated. I will be starting on a very low dose overnight for a few days and working my way up. It has been a horrible day today and I want to pretend I am feeling better so that I can just forget about all of this.
  10. Thank you for all the replies, I haven't tried anything to try and remedy this I try every other week to drive just around to my local milk bar which is about 3 to 4 minutes and my vision is horrible. It gets blurry and then I start to blink a lot and my heart rate goes up and then I get short of breath and dizziness. I am fine as a passenger but as soon as I have to visually look around to drive it kicks in and I can't even drive my son to school or anywhere I am so concerned that I will have an accident. I am scared generally now of just being alone with him incase something happens
  11. Hi to all of you lovely people, i am struggling at the moment with dizziness even though my blood pressure is not dropping a lot when I am upright and driving is unbearable at the moment. I feel really dizzy driving but when I am a passenger I am ok to be in a car. My vision goes blurring when going from looking long distance to short distance like checking my speed. Has anyone else experienced similar to this and has anything helped? I am losing my life at the moment I can't drive I can't go to the shops unless I'm in a wheelchair because I feel that dizzy and I haven't been back to work I'm going to lose to my job, I can't even give my 10 year old a normal life at the moment
  12. Thanks Kalamazoo your replies always get me thinking and researching ?
  13. Hi everyone! It might be a silly thing to ask but ever since I have been unwell which is about 6 months now I have noticed my veins are getting more and more prominent! You could always see some of them in my arms but now they are visible everywhere? Is this normal!? Does anyone else have this?
  14. Thanks for the input everyone! my specialist said that the sudafed is a Vaso constrictor too so since I reacted to the midodrine so badly we will try the sudafed to help with that until I get this next drug for me to try which is in the approval stage. It makes me more alert but that's about it but I'm still upping my dosage at this point. I ended up in ER on a couple of bags of fluid as my adrenaline rush I had left me with a headache for four days and really dizzy so home now and back on the sudafed today! Dizzy girls that midodrine made me so angry at everyone and I was irritated by anything and anyone is was horrible I was not myself either.
  15. Hi Debbie Rose, our zucchini pancakes are pretty easy just use whatever basic pancake recipe you like using or we even use the premade packets when I'm feeling really yuck and then add one medium grated zucchini, one cup of grated cheese whichever cheese you prefer, pinch of salt well lets be honest extra salt because we have too and pepper stir all together and cook exactly the same as pancakes they are delish!