Batik

Absolutely - I was agreeing, but trying to point out that it stays in your system for even longer than people think it does! Mirena and Implanon are meant to be fairly good in terms of getting the hormones out of your system fast when you stop. Oral contraception (the pill, the mini-pill) is meant to be somewhere in the middle. I had a terrible time on Depo myself, it's not a nice one in terms of the side effect profile.

It might feel odd not to have periods, but it's not unhealthy. Healthy is whatever hormone balance works best for you. I do badly on contraceptive methods which involve altering my hormones, so for me that's unhealthy. I do well on a copper IUD, but some women get really heavy periods on those, so it wouldn't be healthy for them. If it ain't broke, don't fix it!

It's effective as a contraceptive for three months, but Depo Provera stays in your system for much longer. It can take around a year for fertility to return to normal.

How do you mean that you have built-in white noise? Do you mean that the tinnitus provides the white noise? I don't think it works that way - my tinnitus was worst when my hyperacusis was also worst. I actually found that white noise therapy helped the tinnitus as well as the hyperacusis. The way the hearing therapist explained it to me is that the body is a very noisy place. Normally we don't notice all the little noises going on, but sometimes something goes a bit wrong and we start hearing noises from inside the body. So white noise therapy helps because it's training your brain to listen to tiny noises less. Earplugs, on the other hand, make you used to less sound, so you end up being even more hyper-sensitive to any sound at all, whether external or internal. Funnily enough, I found the white noise generators in a drawer just this afternoon. I may well give them another try, they'd be handy to have for hospital appointments and the like. They're now sitting in their little box in the inside pocket of my handbag, together with my grey-tinted glasses.

I do really badly on hormonal contraception, so I have a copper IUD instead. Much safer and more reliable.

At which point they decided that you simply had a hangover? Eep. This is why I have trained myself to say "groggy" instead of "stoned" to describe how I feel on medications which over-sedate me. On my GP and eye specialist's recommendation, I went for a visual field check yesterday. Nothing showed up. I suspect something would have showed up if it were my eye specialist doing the testing, she does very long, thorough tests which look at how my eyes fatigue, but she's taken early retirement.

What's he like in terms of muscular tension in his back and shoulders? I find that the Miracle Ball Method is incredibly good for sorting that out. It's a medium soft ball the size of a grapefruit, you lie on it and do deep breathing, with optional exercises too, and then your muscles magically soften up around it. Far and away the best thing for unknotting muscles that I've encountered, and unlike massage, you can afford to do it every day so the effects last. If any of his headache is referred from lower down, that might help. Whtaever the cause of a headache, it's common for the nearby area to tense up as a reaction to the pain, and then that makes the headache worse so you're in a vicious circle. You've reminded me that I should go and plonk myself on the ball for fifteen minutes or so myself, I've woken up with migraine and was about to go back to bed with painkillers. I often put an audiobook on while I'm on the ball, so that I don't get too bored. How long has this been going on for? Is he seeing any doctors for it? Have they checked out his diet, posture, that sort of thing? Has it been diagnosed as a specific type of headache, e.g. tension headache or cluster headache?

I tried it and could never tell whether it was making the blindest bit of difference. Eventually I dropped it due to finances. I've found that there have been very few things which helped me in a nice, big, obvious way.

Only to a doctor who is familiar with the conditions in question. Going to a GP and saying that your hair growth has changed in a funny way since starting SSRIs will probably get you nothing but strange looks. Try going along, bringing a leaflet on POTS (nothing too long), saying that your HR jumps by up to 34 when you go from sitting to standing (though if you can try a lying-to-standing test, I recommend that you do that) and that your BP drops markedly as well (give one example), that you're having problems with dizziness which cause repeated stumbles and near-falls, near-blackouts for levels of exertion that used to be manageable, that you're very fatigued, and I'd measure your fluid intake for a day and tell them what that is as well. Don't overwhelm them with detail. Work out who you want to be referred to locally and then ask for that. I took the print-out leaflet from this site, and also filled in their blackouts/falls checklist.

Ah, the gallbladder/running thing makes sense now. Bummer, really. Although it is so fantastic that you can exercise at that level now! Are you managing OK with the low-fat diet? I discovered the fun way that doctors are taught nothing about nutrition, and eventually found out that it's not so much about what percentage of your diet is made up from fat, it's about how much fat you eat at any one sitting. For me that limit turned out to be 10g. There can also be issues of opioid painkillers reacting badly with gallbladders, do you use those at all? I was fine in that respect before the surgery, but after the surgery I discovered that I can only take opioids on a full stomach, otherwise I get post-surgical pain where my gallbladder used to me. And a friend of mine has the same problem with opioids, only I think she still has her gallbladder. It turns out to be fairly widely reported on the internet. Interesting about the steroid use. I've occasionally been told that I should try cortisone shots into my shoulder due to calcific tendinitis, but on doing my research I decided not to take the risk. By the way, do you actually like being called Ana, or would you prefer another nickname? I'm aware of some of the implications of that name, and I didn't know whether you chose it or whether people have just been shortening your full user name without asking.

Perhaps going GF was enough to prevent attacks but not to restore gallbladder function? From what my surgeon told me, once a gallbladder gets to the point where it's full of stones, it's not working and it's not going to work again in the future. Even if you somehow managed to remove the stones non-surgically, the gallbladder itself is too scarred to work again and will form stones again. Now, a non-functional but non-attacking gallbladder is no worse than having no gallbladder at all, either way the job is now being done entirely by the liver, and the first option spares you the surgery. Although I'm not sure I'd prefer a lifetime of being GF purely in order to avoid that type of surgery, it's a decent choice to have.

Not as yet, no. The GP arrived today, said she'd looked at the leaflet I sent her a while ago and agreed that POTS sounds like me and is worth investigating. I gave her the carefully-chosen article by Julia Newton and she's looking into whether she can refer me there, plus she's also talking about doing a 24 hour blood pressure monitoring test and/or a 24 hour ECG (Holter monitor). Is it necessary to get the 30bpm rise every time, and does it have to be within 10 min?

I doubt that going GF will do much good once your gallbladder is wrecked, they're not really salvageable by that point. If it's helpful at an earlier stage, that's presumably useful to someone, and interesting in a general way. After all, gallbladder problems affect a lot of people and they tend not to be very sure why it's hit someone. I don't think they tend to realise that there's a problem until the gallbladder is non-functioning, however. With retrospect, I would have left mine in, but that's because the surgery really affected me badly, and I ended up with post-surgical pain whenever I took opioids on an empty stomach. Having to stay on a low-fat diet for life would probably have been less hassle overall. It really is an individual thing, though, some people are at higher risk of complications than others.

I am still in the middle of the referral process, but here's what I've been doing. I wrote to my GP, talking about the symptoms that were bothering me (just the POTS-like ones - I have other medical conditions too), giving her a few of my more striking BP/HR measurements (no point overwhelming them), saying that it had been suggested to me that it may be POTS, and enclosing a factsheet about POTS from a respected organisation. Last time I spoke to her, she said she'd been looking into it. Today she visited, and we agreed that it sounded very much like me. She asked if I wanted to be referred to a cardiologist, and I told her about the specialist I've been recommended to see, giving her a copy of a paper (dead on topic, of course) by that specialist. She is looking into referring me, and meanwhile we are discussing the possibility of a 24 hour BP test and/or a 24 hour ECG. So it seems to be going well. You need to pick your info carefully, you don't want to overwhelm them with pages of readings or multiple medical articles.

By the way, a TTT is a massive thing to ask for, as it will involve referral to a specialist outside my district and thus extra funding. So I'm wondering whether an interim test would be a good idea in order to make my case. I think this is all milder since I've been on antihistamines, too (and no, I can't get them to look into mast cell problems, I've tried), so without the antihistamines I think my readings would be more marked.

Some of them are over 30, but not always within 10 min. Though the 114 reading was pretty rapid.

I'm still waiting for diagnosis, although I gave my GP a leaflet on POTS recently and she said she's looking into it. Hopefully I'll eventually manage to be referred to Julia Newton and there will be a TTT, and in the meantime I've requested a 24 hour ambulatory blood pressure monitor, although I'm now wondering whether it should be a Holter monitor instead. So far I've been attempting to do home tests from lying or sitting to standing. Mostly it's sitting to standing as I'm rarely in a fit state to mess around with a BP monitor when I'm in bed. I try to move minimally while I'm doing the test, but I know that I clench my leg/buttock muscles at the least, probably sway a bit, and I only recently got the hang of positioning myself so that I wouldn't have to move when I pressed the button. I'm aware that a home blood pressure monitor isn't a very good way to measure heart rate, too. Here are some of my results. A lot of them aren't immediate in the conventional way, e.g. sitting - then standing - then lying. Aug 11 - sitting or lying HR ranged from 76 to 89, a couple of readings shortly after standing were 104 and 101. BP ranged quite a bit, including 97/67 while sitting, 119/60 sitting, 122/81 and 105/75 standing. Aug 15 - 110/59, 84, while sitting, not long after lunch (which had made me sweaty). 112/74, 103 just after standing, then 100/75, 100 after walking about for a minute or two. Evening of Aug 15 - 110/65, 78 while sitting, then 114/84, 103 after 5 min of standing. Aug 16 - while lying in bed first thing, bit jittery, got 94/61, 76. Got up a minute or two later, got 111/85, 98 after 2 min standing. Random standing reading that morning after a bit of moving about was 109/86, 104. Standing reading straight after lunch, while sweating, was 111/69, 103. Kept standing at that point and the reading 2 min later was 95/72, 94. Aug 17 - this is the day when I was later rushed to hospital after a collapse, and diagnosed with a UTI. Reading while lying in bed in the morning was 97/61, 74. A couple of hours later, also lying down, it was 94/52, 79. A reading just after standing later that morning (probably after sitting) was 109/90, 104. Shortly afterwards I got 109/70, 87 while sitting, then stood up, and amongst the readings were 120/86, 114, which was after being upright for 5 min and standing dead still for 3 min. Aug 18 - 92/59, 75, lying down after nap. Aug 19 - 101/60, 66, been lying down for a while. Stood immediately and readings were: After 7 min standing - 107/79, 85 After 15 min standing - 112/79, 99, sweaty A few hours later, lying down after nap - 98/58, 71 Aug 27 - lying in bed in morning, 108/72, 78. Then stood and: Standing 8 min - 99/74, 102 Bit later: 106/72, 81, while sitting Not long after, after going to the toilet and then standing: 7 min after standing - 90/75, 100 15 min after standing - 108/72, 109 17 min after standing - 116/66, 107 3 min later, lying down again - 108/66, 76 18 min after the last, still lying down - 105/74, 72 Do these count as appropriate rises, considering how muddled the figures are? Does it matter if it takes longer than 10 min a lot of the time? I only did a few tests where I stayed up for long enough to see a big result, the rest of the time I had to give up because I couldn't stay on my feet. The main thing I notice with the BP is that it zooms all over the place, but that I often get low pulse pressure readings after standing. I've had readings such as 19, 15 and 13. When I mentioned this at the hospital after collapsing, they didn't even seem to know what pulse pressure was and told me that 109/90 was a perfectly normal BP. They also recorded that I was tachy in the ambulance but didn't look into it in the hospital. My GP's coming around this afternoon - what sort of tests should I ask for, as an interim measure before I ask to be referred to Prof Newton?

It might sound like a daft question, but when the GP asked how you felt, did you give him an accurate answer or a relative answer? For example, I collapsed a month ago and was taken to A&E. When they asked how I felt a few hours later, I said, "Much better, thank you." I really shouldn't have said that, because what I meant was, "Well, I still can't turn over without getting incredibly breathless, and if I tried to stand up I'd black out, but I've stopped feeling cold from the fever and am not jerking convulsively just now, so I think I'm doing great." I believe that their interpretation of what I said may have been a little different! They figured it out when I blacked out after standing up to use the commode, and then jerked convulsively for the next twenty minutes or so, but otherwise they were all ready to send me home on the spot. You get so used to being in a bad state that it's very easy to think it's not worth remarking upon to a doctor.

That's incredible, and I'm so glad to hear it. I'm curious as to how gallbladder issues interfere with running?

I could never understand people who claimed that they had massive weight changes from one day to the next! I didn't get them even when I had noticeable premenstrual breast swelling. I wonder what it does all mean. I know that weight problems are really common in ME, so it wouldn't be surprising that they'd turn up in POTS as well. I've heard a lot of stories from people unable to gain/lose weight despite massive calorie deficits/increases. I was relatively lucky, I just cut my calories and the weight came off at a steady 1lb/week. I actually felt a bit better while I was losing weight, I was able to manage morning showers for instance. My blood pressure was more in the healthy range when I was overweight, and tends to be on the low side when I'm normal weight (both before and after I was overweight, so it's not new).

I don't actually have a POTS diagnosis, though I'm about 90% sure that I have it. I've had ME/CFS for fifteen years. I've had ANS problems for most if not all of that time, although they have become markedly worse since I had gallbladder surgery this March. March is also when I finished losing weight. I've been slim for most of my life but put on some weight, particularly starting about six years ago, and am now back to around the weight I was when I was twenty. Why do you ask?

That's just made me realise something. I went on a diet last year and lost 30% of my body weight. I was on a good diet forum. People kept talking about how, if they ate something extra salty such as take-out, they would retain water and it would show up on the scales the next day, sometimes to the tune of a couple of pounds. I never ever had that happen in the entire 11 months I was losing weight, despite plenty of occasions of eating unusually salty food.

67/41? Have you told your doctor about that reading?

Fairly good article, yep. Here's one I discovered by accident when yet another person was urging me to try homoeopathy. You simply say briskly, "Thanks, but I've tried it already and it didn't do a thing for me." Then change the subject immediately. I then realised that this is an excellent response, even if you haven't actually tried the quack therapy in question. Explaining how something is a quack therapy rarely works, on the other hand. If they know nothing about it and don't have an agenda to push, they may want to listen. If they have something invested in the idea, forget it. You would not believe how many people urged me to follow the scam known as a "liver flush" when I had gallstones, and even when I politely showed them conclusive proof that it was a scam, most of them got even more argumentative and sometimes quite nasty.

Just in case anyone isn't aware, please remember that xanax is a benzodiazepine. As such, there is a very high risk of both addiction and tolerance. Benzos are better for occasional or short-term use, and should be carefully monitored. If you find that you're taking it a lot, and particularly that you need to keep raising the dosage, check in with a doctor. I've never used xanax, I don't think it's as popular in the UK, but I do use 2mg valium/diazepam sometimes as a muscle relaxant, and less often for anxiety. I've heard some people in the ME community reporting that a very small dose of diazepam (1mg, which means half of the lowest dose tablet) can help with sensory overload during shopping trips and the like, so that the overall experience is less exhausting. No idea how that intersects with POTS, but since there's huge overlap between ME and POTS both in terms of symptoms and actually being diagnosed with the conditions, it sounds vaguely promising.