Jump to content


  • Content Count

  • Joined

  • Last visited

Everything posted by Batik

  1. Amazon UK if it's affordable, yes. Not Amazon in other countries.
  2. Nuun has stopped dealing with its UK distributor, so it's close to vanishing as a product in the UK, and prices are soaring. I'm told they may find another distributor, but meanwhile there are a lot of us who rely on those drinks. Can people recommend alternatives? I don't mind if it's tablets, drops or a powder, although I would like to have something small to tuck in my handbag for the few times I'm actually out of the flat. I'm also willing to make my own powder. About half of what I drink is salty water (a mixture of ordinary salt and low-sodium salt, so it provides sodium and potassi
  3. Neurasthenia?! What century is he living in? Next he'll be discussing your risk of apoplexy!
  4. Oh, is the dry lips a POTS thing? I just thought I had dry lips!
  5. Interesting to see how this is different for people who are able to get out and about more. A couple of you mentioned chapstick: is that just a thing you happen to have in your bag (so do I), or is there some emergency POTS use I'm unaware of?
  6. I think it may be about which part of the sleep cycle you wake up during. I was told not to nap for more than an hour, as after that you get into deep sleep. It takes me a while to doze off, so if I set the alarm for 1h15m* that works for me. My partner doesn't have POTS or ME, and he sometimes ends up groggy the rest of the day after a nap, so it's not just us. Do you have any relaxation practices you can do instead? I really like the app Peaceful Breathing Lite. It's guided deep breathing and totally customisable. I set it for half an hour when I'm meditating at home (well, it's the nearest
  7. Sorry, clarification from earlier: the nightmares are having a severe impact on my mental health, and due to what I assume is spending a substantial period of the night struggling to breathe and/or having an adrenaline surge or whatever is going on, it's also affecting my physical health dramatically too. Dealing with this is far worse than dealing with tachycardia or near-syncope, so it's taking priority. Not to mention that I honestly hadn't clocked how bad my vision has got (I'm having trouble seeing across the room, about nine feet), and I'm concerned about limiting damage to my eyes. I
  8. Are you adding a lot of salt to your meals? Do people remark upon it, for instance? Or do you keep salting as you go along? Are you eating foods which are already naturally high in salt, such as ready meals?
  9. Thanks. The sleep difficulties you mention are the nightmares, and I've already spoken to the doctor about them. No help, and no meds. My partner is being great, and I have a good support network of friends. Also a kittycat! She always glues herself to my lap when my health's worse. Crisis services wouldn't be able to offer anything anywhere near as good as what I have already, and I do have experience of them. Thanks for suggesting it, though. The main problem today was that I'm having a fibro pain flare, and together with hugely overdoing it when I went out for that eye test on Tuesd
  10. AFTER SHOWERING! Not that I feel strongly about it or anything...
  11. I've found plenty of sources saying it shouldn't be used in patients who already have hypotension, which I did at that point. http://www.nps.org.au/publications/health-professional/nps-radar/2013/december-2013/ivabradine "Ivabradine may influence retinal function in humans through interaction with hyperpolarisation-activated currents (Ih) in the retina.3,11 These visual disturbances* usually resolve spontaneously." (What does that first bit mean?) "consider stopping therapy in patients experiencing any unexpected deterioration in vision." I'm waiting for the RNIB to ring me back, and will
  12. I've been on ivabradine for two years or so now. It's helped the POTS considerably. I still have severe ME, and I still have a fair amount of POTS symptoms, including heart rate spikes now and then (I wear a Fitbit Charge HR which is a heart rate monitor as well as a step counter), but I'm not blacking out from things like standing up. However, I've been getting regular nightmares since, hmm, probably around the time I started it. I'm really not sure. I was already getting regular nightmares when I met my partner in July 2015, and I don't think I'd been on the meds for more than six months
  13. Katy - it's been suggested here that when I get episodes of waking up with total amnesia, that's caused by low BP. Doctors uninterested of course. Also I get atrocious nightmares, possibly worse since going on Ivabradine, and while I do have PTSD, they never used to be this frequent. The nightmares may have something to do with adrenaline, I'm told, and can leave me breathless for the whole day. Do you have any links you can point me at?
  14. "chronic low blood pressure (a common trigger for adrenaline release)" Could you tell me more about this, please? The only hormones I've been on were all progestogen-only (note that progestogen, also called progestin in the US, is not at all the same as progesterone),and they made me much worse. I'm not allowed the combined pill as I get migraines and that increases my stroke risk.
  15. Artluvr, it sounds like a trip to the optometrist may be worthwhile, whether you currently wear specs/contact lenses or not. I've just had an eye test, only a year after the last, because I was getting so much blurry vision. Turns out my eyes have changed rapidly this time, no idea why. Wearing sunglasses when you go out can really help with the glare in shopping centres and such. I have prescription grey- tinted specs, ordinary size rather than sunglasses size, which I wear in hospital, shopping centres, that sort of thing.
  16. If you have ME/CFS, that's likely to be affecting your eyes. The problems are muscular and neurological. Avoiding harsh light (especially fluorescents) helps, and sometimes wearing prescription tinted glasses.
  17. If you don't subscribe to a service, medical id bracelets are very cheap. Mine was £12 for the engraved tag, I think including international shipping, and then I made the bracelet myself. You can get basic bracelets cheap too. Very much worth it, I don't think people know to look on your iPad without something directing them there.
  18. I wear a medical ID bracelet which says "Booklet in bag / Severe ME/CFS / (partner's phone number). Handbag (this fits into even tiny bags): a tube of Nuun tablets, a third of which are the Kola flavour which contains caffeine. When I get breathless, the caffeine helps as it's a bronchodilator. A small snack or two, generally a packet of Sesame Snaps and/or a nut bar. This gives me immediate glucose as well as more lasting energy with protein and such. I used to put a 200ml carton of coconut water in, but these days I'm just carrying the Nuun tablets, as I don't tend to end up somewhere wh
  19. The programme that reduces the blue light is f.lux, and it's great for reducing visual discomfort caused by glare. (Although it does give the misleading impression that using it with the usual settings will stop blue light from keeping you up at night. Not unless you use the "darkroom setting", it won't, as it still lets some blue light through.) Glare is a huge problem for me, probably because I have ME/CFS and that affects your eyes. As well as using f.lux to soften the glare, and a Bluelight Filter on my Android devices, I use Firefox addons to alter the colours of the websites that I us
  20. Stephsurf - they do have colourants, but Nuun are quite nice. I wouldn't want to live on them, they're nice for the odd drink, especially if I'm craving something sweet. Another question for people who drink salty water and have also tried commercial electrolyte drinks: how do you find they compare? As I said, mine has sodium and potassium, which are the main ones. I take other minerals in tablet form, as well as getting them through my diet. I'm not sure if Nuun has a slight edge, it may just be that it's more fun having a flavoured drink. When it's an emergency, of course, it doesn't see
  21. Goodness, you have it even saltier than I do! How much fluid do you drink in a day? I know what you mean about ordinary water tasting odd by now. I suspect the only benefit with coconut water is the potassium, and you can easily get that by using a bit of low-sodium salt or salt substitute in your salty water. Of course, that means you get a bit less sodium, it's a balancing thing. What percentage salt do you get with Nuun, any idea? When I'm drinking it, I use 3/4 tablet to 300ml water. Come to that, how do you work out the percentage? I'm curious to know what mine is.
  22. I know we're a minority, most people hate it. So what's your formula? I've tried messing around with powdered magnesium citrate and such, but they don't dissolve well and are easier to take in tablet form. But I do add potassium, since that's easy to find in powdered form (potassium chloride is sold as salt substitute, or mixed with sodium chloride as low-sodium salt) and surprisingly hard to find in a useful dosage in tablet form. This is what I've been taking for years: About three parts table salt to one part low-sodium salt, depending on the ratio of sodium to potassium in the low-sodium
  23. It's normal for periods to be irregular in your teens, and doctors are far too trigger-happy about putting women on hormones (and later, about whipping out uteruses if there's any trouble there). They don't make your hormones better, they just make them look better. Do you need contraception? If not, I'd leave it. I use a copper IUD for contraception, fabulous things, and have always been made very ill by hormonal contraception. Ive only ever been on the progestogen-only type, I'm not allowed combined hormones due to having migraines. DVTs are nothing to mess around with either. My partner h
  24. I can't get to that part, I'm reading on a tablet and it won't show that bit. I'll try a different browser. Aha, there it is. Are you sure that's the full ingredients? It doesn't say "ingredients", it says "nutrition facts", and after their nasty trick with "calorie free" meaning "two spoonfuls of sugar per tiny portion", I would be very wary. And I thought you were worried about laxatives? Anyway, why don't you just try a few different ones and see how they make you feel? Life's too short to stay away from treatments which are almost certainly going to be harmless because you heard a few p
  • Create New...