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Everything posted by Chuske

  1. 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.
  2. 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
  3. 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.
  4. 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.
  5. 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?
  6. 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.
  7. 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.
  8. 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.
  9. 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
  10. 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.
  11. 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.
  12. 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.
  13. The one thing I don't ever really have is high blood pressure. 120/80 is generally highest I see outside of medical environment (white coat syndrome 😉). 105/70 is typical. That might class me as less hyper pots but agree the rest fits As for pulse pressure during the attack my BP was 119/73 so prob wider than normal
  14. Sorry for all the questions @issie What foods do you eat? Are any fruits ok? I'm trying more just to change my evening food. The list you sent suggests last night's meal might be bad if I am histamine sensitive or MCAS no idea if I am. It had spinach, tomato,egg and peppers in it.......
  15. @issie Aren't eggs low histamine? Or are they just common intolerance / allergy food? I'll cut out tomatoes for a bit. What about sweet potato is that better than potato? I'm not going to change diet much yet, as needs careful thought to avoid malnutrition.
  16. Thanks looks very complicated! About the only thing I got from that is nettle tea in the evening is a good idea. I didn't really grasp all the different histamine receptors and what to take to get them in balance
  17. Last night I had egg and vegetables for evening meal, had the same meal with no problems last week. After I had an apple and an oatcake and some walnuts as a snack Drink wise ginger tea with food and either water + electrolytes or camomile tea. I didn't really follow up on the mast cell stuff. I must do reading when well enough. I'm not a very allergic person just cat fur and some pollen. Is there anything simple I can do as a purple bandaid for the mast cell surges that might test if that is the issue?
  18. Thanks not sure it is a sleep problem directly but instead disruption by these weird symptoms ie feeling odd, hot but my actual temp normal, strong but normal speed heartbeat and feeling hyper but normal hr and BP. When I get these at night my sleep medication doesn't work as well. So normally it would get me 5 hours sleep in a block then usually a bit more after awakening for a while. Last night I was just settling off to sleep at 10.30pm and the attack started and last an hour then I took my sleep medication and slept 12 till 2.30. then I slept again 4 till 5.30 with a bit more medica
  19. I've had another setback. Hyper feeling all night and feeling hot (but temp on thermometer only 36c) not sweaty but normal heart rate and BP. Even with a sleeping tablet I only got 4 hours sleep and exhausted. I can't relax trying to get a doctor to come out. They won't be pots specialist but wondered if any general anxiety meds can keep a lid on things that I could ask the doctor for? Just need to stop this hyper feeling so I can rest. Feeling stuck again. No idea how to get through this. Before this setback I might have odd bad night with this but not 3 weeks of it. Had seemed to
  20. You are so right @issie Every day is different. Finding my POTS symptoms are very variable right now. Digestive symptoms seemed under control then last night they were back even with the steps that normally deal with them. Very much find my digestive symptoms cause palpitations in me, so managing them is key. Thanks for that link to the health rising article on neuro-imflammation. Very interesting and great so many drug and supplement candidates to test, just a shame not much funding around to test them. Hope the upcoming larger Watanabe study helps push things along. What did strike
  21. Love this thread, couldn't not post in it to see if anyone else has natural, food or similar things that help? For me digestive stomach bloating can be helped by ginger and lemon tea and fennel seeds. Camomile tea can help with relaxation and nettle tea great for helping me pee better and have lower allergic reaction s.
  22. Has anyone had spells of POTS suddenly improving in terms of heart rates? Last few days when I was very fatigued from poor sleep oddly my POTS was improved. I had standing pulse rates in 70s for first time in years. Seemed almost like I had just bad ME and not ME and POTS. Not sure what has changed. I'm suspecting my stomach issues are a factor in my POTS ie when I have more bloating the POTS is worse. Also I've been hydrating even more than usual. Today I'm a lot more energetic after better sleep but POTS and stomach both worse. Odd.
  23. Thanks @green I've never tried HRV but had heard it mentioned as a way of getting a view on ANS dysfunction. Must admit I didn't look too deeply. Sounds like it is less useful than it first sounds if there is a lack of consistent definition. Also great you found a way to improve your breathing. For me stomach issues can sometimes cause me problems. So I find it best to do these exercises before eating. Agree though that this only works if your breathing isn't disrupted by things out of your control.
  24. @PistolDoesn't sound like my ME except the brainfog and fatigue. Thing is there is a lot of variation between different people so I can't say it isn't, just that it sounds some of the added symptoms sound quite rare even for CFS plus high BP is not usual in ME as far as know.
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