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About Chuske

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  • Birthday July 14

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    Exeter, UK

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  1. @Pistol thanks so much, that is really useful to know in advance of my call with my doctor.
  2. I've recently been prescribed this 4 weeks ago and have got much worse while on it. Has anyone else had that? I had been doing really well and specialist thought would try it to help me increase mobility further. But since taking it I've had more hyper symptoms, dizzy spells, anxiety and my ME (which I have as well as POTS) has got much worse. I'm speaking to my GP tomorrow and hoping to be tapered off it. Reason I'm asking here is can't be 100% sure it wasn't just a coincidental flare up and so wondered if others had found issues with it?
  3. Dr Gupta says salt is only bad if your blood pressure is high, altho that was purely from a heart disease perspective. I think if you are taking water and other electrolytes along with your salt then that should not be a problem? Maybe spread intake through the day, so stomach not suddenly filled with salty water? Whatever the short term effects of not having the salt, when you have POTS, outweigh any long-term ones in the gut or heart of having it.
  4. Sometimes get stuck between sleep and awake. The state is deeply relaxed and drowsy but still consciously aware and can't quite transition to sleep. This only happens in my flares. If it was adrenaline surely I wouldn't get so relaxed and sleepy? Often I get a tight feeling in my head and the more tired I get the more drowsy I get but the harder it is to fully transition into sleep. I'm probably weeks or months away from seeing a either a POTS or sleep specialist so been wondering if anyone else had this and had worked out anything that helped? Or has anyone got an idea what i
  5. Deleted original text as seemed better to move what I originally wrote here to its own thread and could see no way to delete this post.
  6. Thanks @issie. What dose do you take? Or how did you work out the best dose for you? The really hyper spells for me are bad but rare so something to take the edge off them would be fantastic. I'd rather have something to take as and when, rather than being on medication all the time that might cause side effects or withdrawal if stopped/changed later.
  7. Hi @issie you mentioned motherwort on my thread about my flare up, do you take this at a particular time of day or just when a surge happens? Do you only take it in combination with lemonbalm or by itself? How much do you take?
  8. Good to write down how you feel. Can really help. In this flare up I just keep reminding myself this will pass and it will get better. I did before. The trick in these difficult periods is to ride it out.
  9. Got blood and urine test results back. Everything normal except lymphocytes slightly low. Not sure if that means much though, only spoke to secretary, so will have to wait for doctor to look at it and decide if needs repeating or further tests or ok to leave it. So looking like it's just the usual ANS dysfunction that has flared my ME and POTS.
  10. Hi Robin. As I'm finding in this pots flare it's all about stabilising your condition with the help of your doctor and other lifestyle measures. Once you have things a bit more stable it should be easier to start building up again. So don't be in a hurry to do too much exercise and also remember deep healing rest is important too. That said I know how horrible and scary it all is but we will get through it. As the famous Churchill quote says "if you're going through h***, keep going". Hope the meds help you get the heart rate down.
  11. I think anxiety can be both a cause and effect in this. Symptoms cause anxiety which worsen symptoms. Sometimes slow breathing exercises can really help me as helps both anxiety and ANS dysfunction. It is not a cure but can help. Some research suggests panic attacks only occur if you are breathing incorrectly ie into the upper chest, shallow and or fast. If instead you can practice breathing into the diaphragm, slower and reasonable depth (although some like the Oxygen Advantage guy suggest reducing breathing depth is good) then it may well prevent a full blown panic attack. Worth a
  12. Wish I knew what triggered my worse days but as others say it just seems part of the deal of POTS and ME. My symptoms vary a lot and not easy to spot patterns in terms of diet and activity,particularly as sometimes reactions for me are delayed.
  13. What do people find more effective the speed or the rhythm? I think breathing using the diaphragm is a given. I find the rate is more important than being square. I find a full in-out breath using diaphragm over 10 secs to be about right. The rhythm can then either be 3-7 4-6 or 5-5 ( seconds for in then out ) but I find slow in breath and short outbreaths less effective so I don't do those.
  14. Anxiety triggered my recent relapse too. Fits with the research article @issie shared showing the brain can get stuck in inflamed state after high or prolonged stress. Hope you feel better soon I'm going through similar horrible attacks at times. Very scary.
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