katcanny

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About katcanny

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  1. Showering and pots

    I use to love a shower in the morning I just cannot do it anymore, I shower at about 8:30pm so my food has somewhat digested from dinner, I have mentally and physically rested a little before and I have a shower chair that I use everytime. Sometimes I just sit there and can’t wash my hair but it feels nice to just have water run over you sometimes. I have learnt to have showers luke warm and at the moment it’s summer time in Australia so I’m ok with that right now
  2. Help too much weight gain!

    Thank you for the helpful tips I will definitely look into weight watchers online! I just got home from ER after being admitted overnight with worst than normal chest pain and pain down my arm and in my neck. One doc said I am carrying a lot of fluid I overheard a nurse saying my love is sluggish maybe that is the cause for this extra pain? What have people done for too much fluid retention?
  3. Help too much weight gain!

    I’m on 3x 10mg tablets daily. I take fludrocortisone aswell but I was on that for a year before starting propranolol and no weight gain at all. My specialist wants me to cut back on my meds but I’m worried that I will go back to not being able to function. My chest pain has been bad the past week I’m thinking it might be from the extra weight I’m carrying a though. It’s very frustrating I would like for a day or two to not worry I’m having a heart attack. How have you been doing?
  4. Help too much weight gain!

    Hey m@t, still piling on the weight haha! I thought it best to wait until after the holiday period to watch my calories so starting this coming week I’m going to be all over it! I hate the way my body feels and looks and I’m starting to have a flare up so that’s not helping either. Have you found anything helpful with weight loss? I hate that propranolol did this to me but it makes me able to function as a somewhat human being
  5. Specialist appointment!

    I’m definitely not going to do anything to my meds over the holiday period. Last Christmas I couldn’t even enjoy it with my family I was so unwell and don’t remember much of it to be honest. I might need to look for another specialist in POTS I really feel like an experiment at times with this one. I need florinef I did experience a very weird sensation the first week taking it I was zoned out and had to go to the toilet all the time but it settled and the only side effect I have had is weight gain but that was when I started a beta blocker aswell. I was on florinef for nearly a year before any other meds and I didn’t have any weight gain with taking it on its own.
  6. Specialist appointment!

    He said that I seem to be functioning at 7/10 that was his only reason. He wants me to start cutting back on both medications, I’m on florinef 2 tablets per day(the last time I tried to cut down from 1 tablet to half a tablet, I ended up in hospital for a week only to be discharged prescribed more! 2 tablets per day which helped a lot!) and propranolol which I’m on 3 times a day which is stopping my adrenaline surges. I am finally functioning enough to work most days I’m on less hours and have a lot of sick days but I’m still getting there on a regular basis. I really don’t want to do this and he didn’t even give me a plan to do this just said try to cut down every second day and see how you go, then a little more, then a little more! Isnt that dangerous especially with a beta blocker?
  7. Hi all, I had my 6 weekly specialist appointment and since I’m functioning at a 7 out of 10 according to my specialist (Still can’t drive or do anything without having a helper with me! But I’m a 7 out of 10 apparently!) he wants me to cut down on my medication when this is the best I have been functioning in over a year. Any thoughts on this or people that have done this? I feel like his guinea pig and that he just wants to see what happens. I think I may have found the right med balance o don’t want to go backwards again and lose all the progress I’ve gained. Thoughts?
  8. Anxiety

    If you don’t mind me asking how long and how much propranolol are you taking? I have to take it three times a day 10mg tablets. I started on one tablet a day and had to move my way up to three times a day for it to fully be effective for me. Aswell as fludrocortisone that I take for blood pressure. I also had to cut out all caffeine as that could start off my adrenaline too.
  9. Anxiety

    I use to have bad adrenaline episodes, I would be laying down or even asleep wake up be hot sweaty feel like vomiting then the shaking and trembling would start all through my body uncontrollably my partner rushed me to the er first time this happened we didn’t know what was happening to me I started taking propranolol which is a beta blocker I didn’t want to I had heard they are very hard to wean off of but it has helped with a lot of my symptoms and I have no more adrenaline surges when they start my body sort of resets itself it’s a strange feeling but you get use to it and then the adrenaline just goes away. It is also used as a preventative for migraine and after care for people who have had a heart attack too so really win win
  10. Gardening!

    In Australia tomorrow is the first day of summer and we are in the middle of a heat wave! Last weekend we planted all of our vegetables and herbs for this planting season, tomatoes, zucchini, silverbeet, basil, oregano, chives and spring onion we are looking forward to some fresh silverbeet the store bought is nothing compared to home grown! I find the idea of a cold Xmas very romantic though we sweat through eating a big meal and then have to sit in the air conditioning until it cools down before we venture out and then it’s a small window of opportunity before the mosquitos are out and biting!
  11. Scared to go out or do anything!

    Thanks for the advice Yogini i find that when i am on my own i am a little more confident but if I’m with my son I am really concerned because I don’t want to get symptomatic and scare him. I manage to get to work everyday lately but we have a nurse on staff so I’m safe there which is nice to know.
  12. Help too much weight gain!

    Thank for replying M@t, i will try to cut out any junk foods and calorie count over the next week and give an update. I just want to be healthy and I don’t see how being overweight is good for my heart health just because it helps my blood pressure stabilise. It’s like a double edged sword!
  13. Help too much weight gain!

    I completely agree with you Vepa I couldn’t care less about being thin I’m just concerned about the weight gain and that diabetes runs in my family being overweight can cause diabetes. I will try the calorie counting I’m just wondering what food plans people have found helped like gluten free or sugar free. I don’t want to diet as I’m feeling the best I ever have in a year I’m worried I’ll go backwards. Thank you for replying 😊
  14. A day in the life

    This is such a good idea to give others hope and insight! my day starts at 6:30am drink a bottle of water before even attempting to get out of bed it helps a lot and I do this every single day! Get up and get my kids up for school and be ready by 8:30am to get out the door. I have to shower at night I can not do it during the day or morning it causes too much adrenaline in my body. I get to work after a very yucky drive which is only 10 minutes away but driving is still very difficult for me to do atm. I work at a primary school helping students so I am on and off my feet until 2pm when I get to take that wonderful drive home! I’m lucky that my other half picks up the kids from school so I can come home put my feet up and nap upright for about 30 minutes before they get home. I help with homework my partner makes dinner then I clean the kitchen and prepare lunches for the next day and then fall into bed after having a shower at about 10:30pm. I make sure I drink 2 litres minimum of water and I have the odd cup of tea. I can not handle coffee or anything with two much sugar like soft drink or even cordial as the sugar sets of my palpitations. I struggle to get through every day and at the moment I am just living to work and earn a living for my family. I am physically and mentally exhausted when I get home and the weekends are spent recouperating and not being able to do anything except try and prepare for the week ahead! A side note I was diagnosed a year ago and I want able to walk without a walker and couldn’t be on my feet for more than a couple of minutes so I am very thankful I have recovered this much I’ll take whatever I can get!!!
  15. Hi everyone, i have gained 15 kilos quite rapidly and I have the propranolol to thank for that, but I need it so I am asking everyone for their tips on keeping their weight gain down and what dietary things they have tried to help. My specialist keeps saying it’s ok it will help my blood pressure to stabilise but diabetes runs in my family and I am concerned about too much weight gain! Not to mention that none of my clothes fit anymore and I feel yuck about myself 15 kilos is a huge difference to gain in a couple of months. thanks for listening xx