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Sarah Tee

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About Sarah Tee

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    Possible dysautonomia – OI, fatigue, head pressure, muscle weakness that all wear off in evening (no tachycardia or BP issues) – awaiting specialists' appointment or endo test that will give me some answers

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  1. Headache is listed as a symptom of overconsumption of water and of too-rapid administration of IV fluids (or too much). I haven't read that salt & fluid loading as prescribed for dysautonomia/OI can cause headaches, but it doesn't seem like too much of a stretch. Given that some people find that they get no benefit from water & salt loading, there could be a subset of those people that end up overloaded and get a headache from it.
  2. @Knellie, here is an article, rather long, but the author states that fluid loading did not work for her and she is being treated at Vanderbilt. https://wpde.com/news/local/the-article-i-wish-id-had-diagnosed-with-pots-and-still-anchoring-the-news
  3. @Knellie, I don't get migraines, but I did find that although increasing my water & salt intake helped my fatigue for a few days, after that the same amount seemed to give me a fairly bad headache/pressure feeling and did not help with the fatigue any more. I stopped the fluid & salt loading and the headaches went away. (The same thing happened when I tried abdominal compression.) I did also read a post on this board from someone who got headaches from having IV fluids. Four months seems like a good long trial to me. You gave it a good shot but it didn't work for you.
  4. Thanks @Pistol and @Jyoti – I am going to quit that practice. It is about 20 mins away, but there is a larger town 40 mins away with plenty of practices. In Australia, we can go to any general practice that has vacancies, so I will be able to "shop around" to some extent. I used to visit the larger town once a fortnight or so for shopping and social activities, so I don't mind going there. I like the idea of gauging the doctor's receptiveness. I would love to have someone that would work with me. One doctor I tried out for a while was completely passive, and I was telling her what to do,
  5. Hmm, I never drink alcohol (because of an unrelated medical thing), but it would be interesting to try and see what happens. Not as a treatment obviously 🙂
  6. I am asking around to various people for their recommendations, so hopefully that will help. (Also, I didn't mention that there was some kind of meltdown in the admin staff at the practice late last year, which I was inadvertantly caught up in, and had two staff being very unpleasant to me. The other day I got a reminder call from the practice on another phone line, which I answered without knowing where it was coming from. It was not from a different staff member, but after the call ended I found myself shaking. Ashamed that they got to me, but the fact is they did.)
  7. I am feeling a bit teary today. I found out that the GP who I was starting to build up a decent relationship with has gone on leave for at least a year, possibly not to return to the practice at all. Prior to him, I had an older female GP who was pretty good, but she retired (well earned of course!). Then there were staff changes and not much help for a year until I got onto the chap who has just left ... So yesterday I had an appointment with a new doctor, and although it started well, she didn't know anything about my history, which is reasonably complicated, and by the time we go
  8. @Zach Martin, just a thought – have you tried abdominal compression? I have recently read that people who are not helped by leg compression alone might still be helped by leg up to abdomen, or just abdomen, compression. (Of course checking with your doctor first and starting with a gentle pressure.)
  9. @misseb, I will embrace the snack! I think I have made progress on another front as well this week, so if I can get "breakfast" and "lunch" sorted out, I think I will be much better off.
  10. The technique I tried yesterday seems to have worked today as well. I did not feel 100% better, but I was a lot less miserable than usual. I did feel a few different sensations around the old bod – nothing alarming or unpleasant, just signs that something was afoot. I am going to have to wait until I can see a specialist (have got two lined up) before I can do this every day. I will give details then. Not being mysterious, just want to get things confirmed before I start blabbing about it. It's on the standard list of OI/POTS interventions. In the meantime – yippee – sort of.
  11. ... but I don't want to tell anyone and jinx it! I was almost randomly doing an intervention and I think it helped and maybe gave a clue to my symptoms as well. But last time that happened with salt & fluid loading it only worked for one day. Ugh. I have to wait until tomorrow lunchtime or afternoon to try to repeat it. !!!!! Can't get to sleep. So I will half tell diinet.org to try to calm my brain 🙂
  12. Thank you for the suggestions. I think feta cheese could be a good ingredient with the high salt as well.
  13. @misseb, thank you for the suggestions. You have a lot of restrictions to make things harder. I am impressed that you can work when you are only having small snacks for most of the day.
  14. So in the US, the PCP is your everyday doctor – I think equivalent to GP in Australia and UK? This role of physician is different to that (as defined in Australia and NZ). I had not heard of it before. I was referred to the physician by my GP. I get the feeling he is the specialist the local GPs refer people to when they don't know which specialist to choose (ideal for dysautonomia!). WHAT IS A GENERAL PHYSICIAN? General Physicians are highly trained specialists who provide a range of non-surgical health care to adult patients. They care for difficult, serious or unusual m
  15. So, I have a small update: a while ago I saw a physician in the nearest large town. At that time I had not yet had the remission described above nor had I tried hydrocortisone. I managed to get another referral to see this chap again. Don't know if he will be able to make anything of the new info, but I am hoping to persuade him to try me with a one-off of IV fluids just as a test. P.S. I wasn't familiar with the role of physician until I was referred: https://www.imsanz.org.au/about-us/what-is-a-general-physician. You learn something new every day! P.P.S. After reading about ph
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