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Sarah Tee

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    Have dysautonomia symptoms (no tachycardia)
  1. Could it be a bit of hypnagogia/sleep paralysis mixed with autonomic symptoms? https://en.m.wikipedia.org/wiki/Sleep_paralysis I haven't experienced sleep paralysis, but I did used to often get hypnic jerks (feeling as though you are falling and jerking awake) and exploding head syndrome (hearing a loud noise as you are falling asleep). These are more annoying than anything. Sleep paralysis sounds scary.
  2. P.S. I realise it's possible it was a fluke that I felt better that day. But it was the only day in 15 years that my symptoms went away, and I wasn't expecting the salt/fluid loading to work. It was just one item halfway down a list of interventions that I was working through, none of which had helped that far.
  3. The first time I tried salt/fluid loading, it had an amazing effect (symptoms completely gone all day). But I don't seem to be able to replicate it. Taking in the same amount at the same time hasn't worked again the same way. I might get no change, a mild improvement, or a headache that seems like it could be due to overloading. Have tried different delivery methods, amounts and timings, but no luck in hitting the "sweet spot" again. Meanwhile, the symptoms trudge on, regular as clockwork (starting in the morning, worsening in the afternoon, lifting somewhat in the evening, with an o
  4. Just a minor update: I had a phone consultation with my endocrinologist yesterday. I told her about how the a.m. rapid salt and water intake had resolved my symptoms for a day. She agreed that this plus the fact that I felt better on hydrocortisone tablets points to low blood volume (or something in that area). She talked about fludrocortisone (Florinef) as a possible treatment, but said that if I can improve my symptoms by salt loading or other adjustments to my salt and fluid intake that would be a gentler option. (She feared that the fludro would either be too strong a treatment or cau
  5. @sue1234, am I right in thinking that hydrocortisone could raise blood volume because of its mineralocorticoid properties? I am wondering if this might be why it made me feel better. (I have reason to suspect from the effects of another intervention that my problems are related to low blood volume ... not confirmed yet ... waiting for post-holiday appointments!)
  6. Update: It's a week since the day I first took the water and salt bolus and felt better. Unfortunately I haven't been able to replicate the effect. (I can be pretty sure it's not a coincidence. My symptoms always recur at the same time every day, holding steady over 15 years, and there has only been one day that was different: the day I took the salt and water bolus.) I am going to return to my normal diet and fluid intake for a week, then try again. I have an appointment mid-Jan with my endocrinologist and will talk things over with her. She seems to know a bit about POTS and d
  7. @Pistol Thank you for that information. I still have a ways to go!
  8. Broth sounds like a good option. I haven't managed to recapture the feeling I got on the first day. Unfortunately I have some other health problems that are unconnected to the dysautonomia symptoms, which muddied the waters. I did still feel better after dinner every night, and even did some weight lifting the one night, which was fun. (It's very basic, with small dumbbells, not Olympic style!) I will have to try just fluid, and see if that works. I wish I could clone myself so I could test a bunch of different doses and timings simultaneously, instead of waiting days between each!
  9. Yes, I'll definitely give that a try. Should be easier to get an exact dose too.
  10. So on Friday morning I was standing in the kitchen and my eye lit on a packet of salty snacks. I remembered reading that a "bolus" of water and salt is a possible treatment for dysautonomia symptoms, and I thought "Why not". I ate snacks that contained about 400mg of salt and drank 500ml of water over a period of about five minutes. (I have tried upoing my salt and fluid intake previously, but not with the bolus approach.) Friday then turned out to be an amazing day – I felt better! I had energy and strength. I scrubbed two bathrooms, vacuumed the stairs, and pruned back the gar
  11. Is Systrom a medication? I hope you hear back soon. It is great that someone is doing fundamental research and gathering data.
  12. It's in the USA, and I'm in Australia 🙂 The other specialist place I see mentioned is in the USA too: https://www.vumc.org/adc/ Vanderbilt Autonomic Dysfunction Centre.
  13. I think it was 10mg, 5mg, 5mg, distributed during the day. I took the medication back to the chemist for disposal so I don't have the bottle to refer to. I then tried a single dose of 5mg, but still felt awful (from the side effects). I think I will ask my GP to find out from the endocrinologist why it was prescribed. I cannot remember him giving me a rationale, but this happened in February, and I spent ages getting over the side effects, so my memory is a little vague.
  14. Has anyone been here for testing? https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/#:~:text=Orthostatic Cerebral Hypoperfusion Syndrome (OCHOS,OCHOS can be disabling. It sounds very comprehensive. If I win Tattslotto I'll be on a plane from Australia!
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