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galatea

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Everything posted by galatea

  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.
  16. On separate occasions I asked two POTS neurologists/specialists if I recovered would it be risky to have children in case I got ill again since many people get pots after having children. Both of them said that no, and that for many it’s actually a cure! (but that I shouldn’t get pregnant for this to happen). Can’t help feeling slightly sceptical about this…Thoughts anyone?
  17. June, yes I tried it for about 3 months. hope it works for you!
  18. Yogini, yes it definitely feels better than eating other fish meals - it actually gives energy rather than just being neutral. Juneflower, I’ve already tried a gluten free diet and I didn’t feel any better, but yes maybe I’m intolerant to something. Artluvr09 and looneymom, thanks, will definitely look into those foods. Also, anyone else find that pasta is the absolute worst for energy and bloating?
  19. For some reason whenever I eat sushi I feel great energy-wise afterwards, whereas when I eat anything else I feel very lethargic for a long while after. Any idea why this may be? And have any of you found foods that don’t make you feel very tired after eating?
  20. Thanks Corina, and that’s great Little Miss Bounce! Hopefully we’ll both see great improvement on it!
  21. I look 100% healthy all the time, which is quite frustrating as no one takes me seriously apart from family. Like some of you, I also have the permanent slightly flushed face which is interpreted as health and vigour. When I’m too tired to talk or too tired to have an ‘engaged expression’ people think I’m really bored which is annoying.
  22. Just some information for those of you interested in the Octreotide process. I got a letter today saying it was beneficial for me and my heart rate was lower on the Octreotide so I can take it. Anyway, it says that recently they have been given a greater degree of freedom to prescribe (there has been a significant fall in price) directly from the hospital without necessarily going through a protracted period of funding application first. Hope this is useful!
  23. Same here! Since I was little I never particularly wanted sweet things, just salty things like cheese. Now I'm used to eating with so much salt, if any one tries my food they think it's practically inedible.
  24. Before I was diagnosed and didn’t know about having the extra salt and water, and now whenever I forget to add enough salt to meals I get really intense salt cravings. Anyone else get this? It’s like the dry mouth symptom which makes you drink lots of water, like my body knows what I need. I've only seen salt cravings listed as an Addison’s disease symptom, but I wonder if any of you also get it?
  25. Interesting to hear all your replies! Gracefulprincess, yes I’m never sure which is worse, standing still in an elevator or stairs, normally I go for the elevator too and try and fidget to keep the blood moving or even sit if there's no one else.
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