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Sarah Tee

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Everything posted by Sarah Tee

  1. I am struggling to wait out the final 3.5 months to my appt with a dysautonomia specialist (cardiologist), but I feel my health is deteriorating and I need help now. I suggested to my doctor (GP/PCP) that I should see a cardiologist locally to provide some support while I wait for my specialist's appt. For example, there is a cardiologist who visits to see patients once a month at the GP surgery. The GP said that a cardiologist who is not a specialist in POTS/chronic OI would not be able to help me. I disagree. Wouldn't any cardiologist be familiar with volume depletion, OI
  2. @MTRJ75, that is such great news. Thank goodness you got a psychiatrist that knew their stuff! I am so glad you will get some financial help, and I am also hopeful that all kinds of doctors are getting dysautonomia, POTS, anxiety and somatic illnesses clear in their minds so that anyone suffering from any of these can get the right diagnosis and help.
  3. Another update – nothing of significance to report yet Raising the bedhead seemed to help on the first two days, but the third day I felt a bit shaky (not a normal symptom for me). Put the bed back down and the feeling went away. I think I need to raise it more slowly and gradually. Having small alteration/painting done to house and currently sleeping on different bed that can't be raised, so will have to get back to that experiement when I move back into my bedroom. No joy with the physician – appointment was given too late to be of any use (only a week before dysautonomia spec
  4. One way you might get onto a specialist with dysautonomia in Sydney is by having your GP refer you to a neurologist that they know is good, and being specific in the referral about the dysautonomia. Then that person will likely contact your GP and say "I am not the right person for this job - you want Dr X". And the referral can be forwarded to Dr X or your GP can write a new one. This happened to me recently with a referral to a GE surgeon. Turned out he didn't specialise in my problem, but he knew who did, and my referral was quickly passed on to the right person. There doesn'
  5. A sort of a negative update: I tried abdominal compression, almost by accident (I was sitting in an odd way squeezing a pillow against my abdomen and tensing my arm muscles and noticed I suddenly felt better). It worked twice. When I tried it on a third day, I got the same kind of headache that I got when I persisted with the salt & water loading as described above. Sigh. I am now trying raising my bed head. One night so far (last night). Was a bit uncomfortable, but only because of the angle. Did not feel any other effects. Am waiting to see how it goes. I usually feel rotten
  6. Yes, I can relate. (I don't have EDS or POTS/heart rate problems.) My symptoms (fatigue, OI) used to only show up in the morning, and would disappear by morning tea. Then they extended further and further into the day, until now, 15 years later, I don't feel better until late evening. But many evenings I feel completely normal and you will find me doing chores, exercising, cooking and trying to have some kind of life between 11 pm and bed. Obviously something in the body isn't right, but comes good later in the day. So far no answers. I did see another person here who has abnormal co
  7. 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.
  8. @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
  9. @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.
  10. 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,
  11. 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 🙂
  12. 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.)
  13. 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
  14. @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.)
  15. @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.
  16. 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.
  17. ... 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 🙂
  18. Thank you for the suggestions. I think feta cheese could be a good ingredient with the high salt as well.
  19. @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.
  20. 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
  21. 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
  22. @jinglebean, thanks for letting me know about your experience. How frustrating. It's like being in the too-hard basket of the too-hard basket! There seems to be lots of good work being done to investigate dysautonomia and OI now, but I feel like it's all about 30 years behind other fields. Something measurable must be occurring when we do respond to an intervention or medication, but no-one can measure it yet. It seems like blood volume could be important – if only it could be measured as easily as blood pressure.
  23. @Zach Martin, by the way, did your symptoms start suddenly or gradually? Mine started gradually, about 15 years ago, and used to only affect me for an hour or two in the morning, but have extended further and further into the day.
  24. @Zach Martin, judging from reading forums, a reasonable number of people report feeling somewhat better later in the day. I actually feel 100% better (no symptoms at all) later in the day, which a smaller number of people report. I call it "Jekyll & Hyde syndrome" because it is like being two different people. Here's someone talking about a similar pattern: https://patient.info/forums/discuss/brainfog-and-fatigue-until-the-late-afternoon-or-evening-641793 I have seen a lessening of symptoms later in the day mentioned here and there by dysautonomia specialists in papers or confere
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