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  1. Thanks! yes, keeping up some sort of normality instead of hanging around in pyjamas definitely helps. Like when I have to get up early and quickly to go to the doctors or something, I feel more alert and well.
  2. Hi, I haven’t been on the forum for months, as I have been feeling much better, just thought I’d pop back in here today. I thought it was the Mestinon, but last week I decided to come off it to see how I’d react – and I’m doing just as well! I’m definitely not completely better – but I’m incomparably better than I was a year ago. My interpretation of why I’m better is firstly just time, and secondly getting into a sort of upwards energy spiral. The mestinon was initially a big energy booster, which then boosted me into have a more active lifestyle etc. I think the worst thing about being ill is getting into a downwards spiral, and arranging (not through our fault) all our lives around the illness, through diet, exercise, carefully measured activities etc. Recently (only possible because I was feeling slightly better anyway) I decided to ignore all the diets, not go so nuclear on the salt, to stop timing my daily walk and so treat it less as a necessary exercise for the illness and this has definitely helped. I feel less controlled/ governed by illness, although I totally understand this isn’t possible for many. I’ve noticed that when I want to/pretend to appear healthy in front of people, I genuinely feel more energy, whereas when I’m worried people don’t take my POTS seriously enough I actually feel much worse. Also the more attentive I am to how I'm feeling the worse I feel. This is in no way implying that it is psychological, nor that an attitude can cure, I’m not sure why this is. Anyone else get this? It’s been something I’ve often been aware of but that is quite hard to accept - and which I would only discuss with other potsies, NEVER to anyone else since then they would say it's all psychological and other **** This is a fascinating article in the NYT about the relation between the mind and body, hopefully some of you will find it interesting from a POTS perspective. Would love to hear your opinions. http://www.nytimes.com/2014/10/26/magazine/what-if-age-is-nothing-but-a-mind-set.html If the link doesn’t work, you can google ‘What if Age Is Nothing but a Mind-Set?’
  3. Plug in electric fans are great, I would really recommend one! also that way if you go out your body can adapt more easily than with air con.
  4. Great, yes let us know how you get on with it!
  5. I tried Mestinon several months ago, and the effects only lasted a week, so I came off it, but since I tried it again it hasn't. I had to increase the dose after a week but that was it. I hadn't written this earlier because I wanted to be sure the effects wouldn't wear off, but now it’s been 6 weeks and it’s still working. Before the mestinon, I had terrible concentration, and reading more than a paragraph was impossible. (At first partly due to dizziness, but when that was sorted out with medication I still couldn't read at all because of the mental fatigue). Now I can read 10 hours a day with no problem. I wouldn’t be able to do serious studying or work, but it’s still a drastic improvement. Strangely it hasn’t helped with the physical fatigue or any other POTS symptoms, just the mental. Just wanted to say all this in case there’s anyone else who has brain fog and concentration problems, who hasn’t considered Mestinon.
  6. I did the Dr Levine programme too for 4 months, near the beginning of the illness. I felt no improvement while on it because it was so exhausting, but when I stopped I had about 3 blissful weeks of very strong leg muscles where I felt 95% better, but without exhausting myself with doing the actual exercises. Now I walk for about 35 minutes every day, which isn’t improving the condition, but is more like maintenance to keep me at a certain level. If I don’t do it for a couple of days I feel much worse. The doctors I've spoken too say that exercise is the only intervention which can improve the 'length' of POTS, but that it doesn't work with everyone.
  7. Maybe it’s Migraine Associated Vertigo (MAV). I’ve had it ever since I’ve had POTS. It causes continuous dizziness or vertigo made worse with head and eye movements, but without the actual migraines or headaches. If you have blurred vision, I think that's listed as a POTS symptom.
  8. An electric fan! I sleep with it on next to my bed, and then carry it round the house with me to whichever room I'm in.
  9. The fatigue and brain fog are always there, and I never really feel well even when sitting and laying down, but the tachycardia and symptoms you describe do go away. I didn’t realise some people feel completely well when not standing!
  10. Finishing my degree, travelling, and lots of socialising to make up for time lost!
  11. Brain fog is my worst symptom, because it means I can’t read. I can’t really read more than a paragraph before losing concentration and feeling a worsening of symptoms. Very frustrating! When you say you have trouble seeing, d’you mean like blurred vision? I get that sometimes (especially with reading), I think it’s meant to be quite common with the condition. As for being tired of being tired, I know what you mean!
  12. Marina, so do you get the blood pooling when you lie down at night? If so, you’re the first other person I’ve heard about who also has this! I always have to sleep with the cold tub next to me as I get it after about an hour of being in bed – which seems contradictory to pots, and no doctor has even been able to explain.
  13. I get very hot red feet with a lot of blood pooling which stays for ages after my shower, but I discovered a great technique: before getting out of the shower put your feet under freezing water; the blood vessels constrict and it feels so much better! I have a tub which I fill so I can use it whenever my feet are getting hot with blood pooling.
  14. My mum had severe insomnia for 20 years, but last year went to a cbt course for insomnia and is completely cured. I got her to dictate me the main tips: Use the bed and bedroom only for sleeping Never read in bed or have a lie in If your daughter wakes up in the night she should get out of the bedroom and only return when she’s sleepy Most importantly: have very regular timetables, go to bed at same time and get up at the same time, whether you’ve slept or not Avoid naps no caffeine If there’s an insomnia course she could attend that would be worth considering Hope she gets over it soon! x
  15. Thanks for the replies. Yes, from what I’ve read pregnancy helps some and not others, and some people feel better after giving birth but not all. I was just surprised that both of them said that it could work as a trigger for getting better completely, I’ve never read anything like that before.
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