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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 potassium), but I do like being able to have these nice drinks, and they seem to have a better effect on me. Here's what I need, in no particular order. 1. No sugar at all. The fibromyalgia has a hissyfit if I have sugary drinks. 2. Sweeteners - I'm picky! Nuun was fine, High Five tasted horrible, and I'm wary of sweeteners which may cause gastro-intestinal upset. A good flavour, in general. 3. Dissolves properly in water, preferably without needing to be stirred. I tried the MyProtein powdered electrolyte mix, for instance, and that left unpleasant chalky residue. If making my own, is there a magic ingredient that makes it fizz that would solve this problem? 4. Good blend of electrolytes. 5. If I make my own, I'm wondering about trying malic acid in there, since I have low stomach acid due to my mast cells meds and it's meant to help for fibromyalgia. I now drink through a straw. which should stop problems with the acid attacking my teeth. 6. Vegan. 7. Available affordably in the UK. Please check UK sources before recommending something from the US! I go through this enough that the wait time for a US order isn't practical, plus if I spend over £15 I get hit by ferocious customs charges. 8. If I'm making my own, it needs to be easy to put together from powders I can get hold of without trouble. I am not going to be squeezing lemons for this! (I've got severe ME and am bedbound.)
  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 I get to real meditation) and that's very restful. * how on Earth did SwiftKey know to predict that?!
  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'm familiar enough with emergency health services to be able to assess whether they're worth contacting or not, and I have my partner to help give me some sense of perspective. The thing that is bothering me is that I do not have any doctors who know a thing about POTS. They didn't even know how to interpret the TTT or 24 hour ECG. If it were simply a matter of asking the GP, I'd be sorted by now! This is why I'm trying to find out what other people's experiences with ivabradine have been. OK, let's take the known visual side effects of ivabradine, luminous phenomena and blurry vision. Does anyone have any idea why ivabradine might cause those, and how it would tie in with POTS?
  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 Tuesday (turns out the specs are already completed, by the way), I am absolutely exhausted and have been too zonked from pain meds to be able to risk further sedatives. I'm doing a bit better this evening, at least, though I have no idea when I'll next be fit to shower, let alone leave the house. More awake than earlier, and I think starting to get Restless Leg Syndrome, so I might risk 2mg diazepam. Oh yes, and I'm not exactly sleep deprived, I'm sleeping about nine hours a night. But it's very poor quality sleep. I've been on ivabradine for two years. I don't think I'm getting luminous phenomena. I mean, I get episodes where darkness and brightness are patchy and odd, but I think I've had that for a lot longer, probably as long as I've had migraine (22 years) and certainly since I developed ME. The blurry vision is what's new, along with a significant change in my myopia and astigmatism. I feel like a bit of a noodle for not checking that before I went to the optometrist, but I am on a lot of meds and there are so many possible side effects for each. If it turns out this prescription is wrong, I hope I don't get charged twice for specs, they were expensive! Anyway, we are curled up watching a Star Trek film, we've had a nice dinner, and my partner is tootling at the ocarina in the other room while I type. I think it's the Harry Potter theme tune. I would still like to know more about ivabradine! It doesn't seem to be commonly used. It's the first medication I've ever been on where the dose has been half a tablet twice a day, where the doctor can't just order in a tablet of the right dose. Googling has revealed that there's one person on record as getting nightmares on ivabradine. They stopped and started it a bit, which made the pattern clear. For all I know, there could be many others who didn't report it. Anyway, the blurry vision alone is enough reason to come off it for now, so I'll see what that does to my sleep.
  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 talk to the optometrist as soon as I can.
  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 at that point. They are around five nights a week and they range from pretty bad to absolutely terrifying. A bad night will leave me with a painfully tight chest, anxiety and total exhaustion (i.e. bedbound) for two days. I should note that I have PTSD, but I've had that for fifteen years, it's gradually improved over time, and the nightmares never used to be that bad. I've also been getting increasing anxiety symptoms, which again are relatively new for me at this level. Apart from this my life is generally going very well, so it's not as if I am under work stress or in a bad relationship or something which might account for it. I've been wondering whether there could be a medication change behind it, though the GP says nothing stands out as a cause. I'm told that PTSD nightmares are different to normal nightmares, and that they are associated with a rush of adrenaline. The other noticeably worsening problem is blurry vision. Every morning my vision has been blurry, whether just very mildly and for a short time, or more noticeably and for several hours. I've been tested for diabetes, nope, not that. I went for an eye test on Tuesday (I am still absolutely exhausted from that) and even though it was only a year since my last prescription, my eyesight had worsened considerably. I'd lost a dioptre in my better eye and the astigmatism is markedly worse in the other eye. (At the age of 37, my myopia shouldn't suddenly be getting worse like this.) So new specs are being made up. The optometrist said the new prescription will be what's causing the blurry vision. I just found "blurred vision" on a side effects list for ivabradine today. If that is the cause, I suspect I shouldn't be having an eye test just yet, that I should come off it and see what my eyes do then. The other possible culprit is that I was wearing a sleep mask that was a bit on the tight side, but while I think that might have made it slightly worse, I doubt it created the problem to this extent out of nothing. Now I've got a looser eye mask (for, hmm, a week or two), I haven't had as bad an episode in the morning, but I still have problems with blurry vision. Anyway, I've been snooping about this forum recently, and in, erm, I think it was the thread about hormones, someone talked about low blood pressure at night causing adrenaline surges. Ivabradine is known to cause low blood pressure as a side effect, and some sites say it shouldn't be prescribed if you had low blood pressure to begin with. My daytime blood pressure has actually risen since starting ivabradine, but I have no idea what it's doing at night. I've never in my life found a medical professional who thinks low blood pressure is ever a problem, so I have no idea how often it's been low and they haven't mentioned it. (The most common comment I get from someone taking my blood pressure is, "That can't be right," and a close second is, "Well, aren't you lucky not to have high blood pressure!") So if the ivabradine is making my blood pressure drop at night, and that is causing adrenaline surges, am I right in thinking that could be causing the nightmares? Random thing: for years I've had an occasional problem where I wake up at night with total amnesia, no idea of who or where I am, plus my heart pounding, pouring with sweat, often with sleep paralysis. I've been told here that it might be caused by low blood pressure. I still have no idea what it is or what causes it. Does anyone know more about this? I am planning to stop the ivabradine, without talking to my GP, as she won't have a clue and doesn't seem to realise how horrendous nightmares like these can be. So I'll take the morning dose for three days, then stop it altogether. I'd rather be passing out again. Anyway, I'll see what happens then, and if there's any sort of result I will talk about it to the GP. I only saw the cardiologist once and was thoroughly unimpressed, so goodness only knows what will happen then. (I was told that I didn't have POTS because I fainted before my HR had jumped more than 26 during the 24 hour ECG; and with the tilt table test I was full of mast cell meds and didn't faint, though my BP was 96/84 at one point and I was thoroughly symptomatic, so I was told that was normal too. And as a result, couldn't get a referral to the out-of-district ME specialist I've been trying to get referred to for years. I don't know if they'd take my Fitbit data as evidence of HR spikes, though. I had a 40bpm spike yesterday caused by a short, slightly stressful phone call, while sitting down, and that's after it's been averaged out over five minutes for each data point! It must have been a much bigger spike when taken on a minute-by-minute, or second-by-second, basis. And yes, that's when I'm on ivabradine.) Apologies if I sound anxious, last night's nightmare was really horrendous, and it's left me very shaken. Eta: yesterday's HR log. Each data point represents 5 min, averaged out. https://www.dropbox.com/s/3eda1m5nnvrtsbp/Screenshot_2015-02-28-14-35-21.png?dl=0
  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 where I can't get a glass of water. A little resealable bag with a few meds in. Sometimes I carry an electric hand-warmer as well, not that I've got around to using it yet, but my best friend's house is freezing and it's been great in the past. I also have two pages of A4, folded down into a transparent plastic A7 pouch, which have all my essential medical details, including diagnoses, meds, explanations of various things like the lesser-known conditions, what to do with me if I'm in hospital or if I collapse, a pain scale. Mostly that's useful to fish out and hand to a medical professional for an ordinary consultation, or to show to new support workers so that they know more about me, or a massage therapist, but in emergencies, it's really essential. I can't move or talk when I collapse badly, I need something to explain matters. People tend to be surprisingly grateful when I hand it over, I've had ambulance staff thank me profusely. Also I have an extra £20 tucked into my phone case, just in case I forget to top up the cash in my wallet, but that's more of a bad-memory thing. I have a medical ICE widget on the home screen of my phone, as well as on the lockscreen for when I use that. Similar basic medical info, plus three emergency contacts. At home, I make sure that I have a regular supply of small snacks and Nuun tablets, and keep the snacks on the shelf my handbag goes on. I also have an electric heated blanket, which is good to huddle under when I'm exhausted and freezing. There's an extra copy of the emergency booklet pinned to the inside of the front door. I have a community alarm service emergency pendant, which I wear on my worse days if I'm at home alone.
  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 use frequently. Black text against a light coloured background (grey, light blue, that sort of thing) works well for me. I cannot stand websites written in medium grey text on white!
  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 seem to make a difference, I'll just take whatever I can. Today I was exhausted while out at the optician's, and it helped so much to have an electrolyte drink, another glass of water, and a snack (Sesame Snaps). I like the fact that the tube of tablets and the snack doesn't take up much space in my bag, and I carry a seriously tiny bag.
  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 salt. This gives me a mix which is mostly sodium and a bit of potassium. 1/2 tsp of the mix to a 800ml/27oz water bottle. This is about 50% of what I drink during the day. The rest is tea (usually decaf), herbal tea and a couple of Nuun drinks. I aim for 3 litres a day total, on my cardiologist's instructions.
  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 had one in 2012 despite being young and healthy, and his sister's had two in her thirties too. They have a genetic thing going on. Are you getting symptoms at all apart from the irregular periods?
  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 people had a mild reaction! It's not a lifetime commitment to try them. One thing I will say is that tablets are easier to store in bulk if that's what you're drinking all day. How much are you meant to be drinking? My cardiologist has me on 3l,but I'm pretty tiny, I think it'd be 4l for average sized people. So that's worth thinking about. One nice thing about salty water is that you can put it together pretty much anywhere. Tablets are useful to carry with you for when you're out, so I definitely recommend finding a brand of tablets you like for emergencies, whether they have sugar or not. For home use you get more choices. Have you tried salty water yet? Bicarb of soda in water is another option, but I don't think you can put as much in, between the taste and the laxative effect.
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