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Suzanne

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Everything posted by Suzanne

  1. Welcome to the wonderful world of POTS! I take 4g of salt daily via tablets. I have not had any stomach pains. I could not tolerate the salt diet and really don't enjoy so much salty food. Much easier by far is to take 2 tablets 3X daily. Just experiment and see what helps. Gatorade is great as a volume load when you wake up. I drink 600ml like a dying man in the desert. I try not to touch it again in the day as it is full of sugar. I do have it when I return home after a walk - all 10 minutes of it - but I feel quite dehydrated and the gatorade helps fix it. Good luck.
  2. Sorry to be a party pooper on all the pro shot posts, but I had a flu shot the winter after I had a bad dose of pnuemonia. Bad move. I was very sick and even more tired and listless. My immune system was weakened and I got quite sick with the flu. i guess everyone is different, but if you have a sensitive system as I do, I would be cautious.
  3. Hi everyone, thanks for all the great feedback. I will be prepared for a slower recovery and will tell all that I have pots. At least medical profession seem to understand a bit about itl. Saw my physchiatrist yesterday and he said I will need double the time in hospital and a longer recovery due to pots and also due to ongoing battles with depression. Not sure if my surgeon will agree. I have been caught in the middle of doctors before, not nice. I am trying to focus on a positive outcome and it sounds like most of you don't regret it and your health has improved - in that department anyway. I am having trouble with my bladder now and have to self catheterise which is a right pain. I am hoping and praying that the bladder will function normally after the op. Such fun being a woman! PS: Is hanging out the clothes on the line outside too strenuous? Thanks
  4. I am about to have a hysterectomy in 2 weeks and am concerned that my POTS symptoms will hinder my recovery. Has anyone had the procedure and recovered in the 6-8 week period? I am especially concerned that my BP will drop in hospital and the nurses will push me to walk etc. Is this unrealistic? Thanks for any feedback.
  5. Thank you all so much for your feedback. I feel lucky to have a shower at all. A good suggestion was to only have a shower at night. I am a bit of a clean freak, but I think this will work for me. Just have to work out best time to shampoo hair. I can't put my head in a sink, but will try for a midday shampoo. I might have to bite the bullet and talk to my hairdresser about a simpler style, one that needs little blowdrying. As always, good to know I am not alone.
  6. Hi, does anyone else feel dreadful after they have washed hair and blowdryed it? I have to lie down for an hour. I make sure the water is not hot and I don't do anything fancy with my hair, but still, it is every second day. Tried doing at night, but it exhausted me so much that I had trouble sleeping. I feel I need to cut it all off, but I am hanging on, have had to change so much, my body is a bigger shape, but I try and care for my hair - call me vain! Any tips would help.
  7. I have had POTS for 4 years with no sign that it is on the way out. Florinef made a big difference, but learning to manage it better has really helped. I have hung on to the recovery process, wishing to be better for so long, it actually made me worse. Now I am trying hard to accept my limitations and try and make my life meaningful in a different way. Great to read that so many have improved, I can still hope then.
  8. Hi, thanks for all the info. I am going to read up on them all before I see my doctor on Monday. I have been so ill on Effexor that he has taken me off and I am on a short course of valium to try and settle my anxiety. My stomach is churning, so have not eaten much in the last week and at least I have dropped some weight, the only good part in this mess. I am sure I will regain it, but it feels nice to have a flat stomach again. The leg ache has gone, but the agitation is too severe. Seems like no happy medium yet, but will keep trying. Thanks for the support and good to know that others have had similar problems.
  9. I am currently trialling my fourth AD and am feeling even more down. I have tried Arima, Avanza, Zoloft and now Effexor. They spike my anxiety through the roof, make me nauseous and make my sleep very difficult. The only exception was Avanza (it may be called Remeron in the US), it helped for a few months, but unfortunately did not work after a while. I also put on stacks of weight and it did not look like stopping. Apparently the Florinef makes finding a compatible AD very difficult. I do have a great specialist who is trying hard, but I am starting to wonder if I will find anything to help. Does anyone else have this problem?
  10. As a mum I feel for you. How distressing to see your daughter go through so much. Doctors can be very unfeeling when they say it is emotional. I think they say it because they can't figure it out. I am glad that you finally have a diagnosis. Addison's is serious, but I believe that it is very treatable with medication. As for POTS, there are no easy answers, everyone seems to have different symptoms. However, there are lots of tips on how to manage it on this site and you will receive lots of support, which really makes a difference. I have seen my own kids in hospital many times, but nothing as serious as your daughter, so I have a little idea of your journey. Hope you will find answers and strength. Take care.
  11. Hi Donna, sorry you are feeling so down. Kids sometimes can be scared and confused, so they show it as anger. They just want everything to be normal, so they feel safe. I have 3 boys and it has taken a long time for them to "get it". I have tried to explain it, but all they want is their mum to be like everyone else. I have also tried doing the housework and then collapsing so they could see what happens if they don't help. It only helped a bit. What I have done is spent as much time as I could with them. I sit on the lounge and am available to talk to whenever they are ready. I also have an open door policy when I am lying down. My youngest boy is 11 and he likes to come and lie on the bed with me and tell me his news. I have beat myself up for years about how I am letting them down by not being able to take them everywhere. I now believe that just "being there" for them is more important than "doing". I also insist that they help out in the house. They used to complain and whinge all the time, but eventually they realise that it just has to happen. It is tough when you are on your own (I have a husband who travels extensively, so feel like a single parent sometimes). It is draining, but i believe that my kids are better people due to my illness. They have more empathy and if nothing else, they are independent and can wash and iron their own clothes! Hang in there, talk to them as equals and explain how you feel and that you love them and hopefully they will support you. Be kind to yourself.
  12. What a great doctor! Wish I could clone him! Sounds like a good idea to see a pyschologist, it is tough to figure all this out by yourself. Glad you are feeling more positive. Thank you to all who posted as I have been very down today and it has helped me also.
  13. Merry Christmas to you all from me in Australia. It is finally raining here after hot days with bushfires. Wishing everyone a healthy 2007 and courage to cope with a potsy life! Suzanne
  14. Half a glass of wine and I have a migraine and severe fatigue. Would like to find something, just one drink in a while would be nice, without sounding like I have a problem!! Very hard to find an escape with POTS. Can;t exercise, can't drink, can't even eat chocolate! Any suggestions?
  15. I wish it was a case of just pushing yourself and you could work! I worked for 3 years after diagnosis, but was spiralling downhill, totally exhausted to the point I had to stop in Feb this year. I have always pushed through, to the detriment of my health. I wonder if all that pushing contributes? Now I hope to return next year with a very light load, maybe 4 hours/week to start! I think your boss is unreasonable, can you give him some literature to read? I hope you can sort something out, I understand what it is like to love your work and not want to give it up.
  16. I just take salt tablets, 6 per day. I really do not like foods high in salt and crave sugar more than salt. Maybe because of the salt tablets. They don't seem to cause nausea.
  17. Gedday! Welcome aboard this crazy ship. You will learn lots and the passengers are very nice.
  18. I got pnuemonia, hospitalised etc. Never recovered. Doc thinks the illness triggered what I may have already genetically had, but it had not interfered with my lifestyle. Now, it totally dominates my whole life and I am over it! Welcome to newbie sfrnkln (tricky one to write!). Come and learn with us
  19. Warm wishes and sunny thoughts from me Down Under. Suzanne
  20. If I go out at night, (usually for a quick meal) I always rest up in the afternoon, I leave by 9 and am in bed, lights out by 10pm. But I always have a terrible night, aching legs etc. The next day I am unbearably tired, ache all over, especially eyes. If I go out to the same event during the day (for example, eating a meal in a cafe), rest up when I am home, the next day I am tired, but can still manage. Does anyone else experience this and have any ideas why nights are so bad. I am seriously considering not going out after 6pm. Not that I do much anyway, but with the festive season, there are a few events on that I really can't face. Any help would be appreciated.
  21. No way, makes my HR go beserk. I can tolerate caffeine in tea, but it is a lot less. I sometimes order a decaf coffee and then tell the waiter to make sure it is decaf as I will pass out if it is not (has happened!). Sounds dramatic, but it is fun to see their face. Worked with a girl who used to deliberately make caffeine coffee for people who asked for decaf. She thought it was hilarious.
  22. Hi, i have noticed that people seem to have all sorts of tests. I have had the tilt table test and the "usual" blood tests. I think that means testing for major nasties like diabetes, thyroid etc. My blood tests come up normal, but I sure as heck don't feel normal. My doctor says I don't have CFS, just POTS, but crikey, can POTS make you feel so tired, lethargic, aching etc? Just wondering if there are any tests I should be asking him for? Any help would be appreciated.
  23. I have trouble exercising. I don't feel it during the exercise, but afterwards. I think the adrenaline pumps and it is easy to overdo it. I agree with the others that starting small and building up slowly is ideal. I do this and still struggle to walk more than 15 minutes, or do more than 10 minutes of weights or pilates. Anything more and I am exhausted all the next day. Important to do something though, otherwise deconditioning becomes an issue. Hang in there!
  24. I kept working for 18 months after diagnosis due to finances and the belief that I was going to get better. Eventually my body just gave up and I have been at home for 10 months. My doctor is pushing for me to return to help with mood etc, but I just can't see how I can hold down a job. I have 3 kids and it is nice to be around for them, but I would prefer to be working or volunteering on some basis.
  25. Thanks for this thread, as I am trying to figure it all out too. I have not had the injections and would not due to the risk factor. It is bad enough having a bad reaction to a med, without having it in your system for 3-6 months. At the moment I am trying to find a bc that will stop the bleeding. I seem to be taking higher and higher doses and this worries me and I still keep ovulating. I keep taking the pill and have a breakthrough bleed for about 2 weeks, then it stops for a few weeks. Whilst it is a pain having to use liners, I think it is a small price to pay for not having the drop in bp, the mood problems and the period pain. Thanks for sharing everyone. Hopefully, between us all we can figure it out. My doctor has no clue!
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