Batik

The thing about someone needing help with getting their socks on is that it indicates a high level of disability, but doesn't necessarily indicate that those needs are being met, and for almost all cases, the needs aren't anywhere close to being met. I probably do need a live-in carer, yes, but I'm going to be lucky if I get enough help from social services to get more than one meal a day, now that my partner's left me. Don't worry, I know you meant well! Kelly - ah, yes, that makes sense. I've often found that reducing sensory input from one source makes the overall sensory overload problem easier to deal with. I'm not quite sure how I could apply that to dressing, mind you - lower light levels? Incidentally, my hearing therapist told me that ear plugs are the last thing we should be using, as they make the hyperacusis (hypersensitivity to sound) worse by training the brain to get used to silence and freak out at sound. You're meant to use white noise instead. She gave me little in-ear white noise generators, which I've lost by now (although I used them for a course of treatment and they helped hugely), but these days it would be easy enough to set up using an MP3 player and headphones/earbuds.

Yes, it's normal for side effects to change with different dosages. I experienced massive problems with word-finding at 1800mg which vanished when I went up to a higher dose, but came back again when I passed 1800mg on the way down.

Not really - they're only here a few hours a week, I'm at high risk of falls and so forth the rest of the time, and they're pretty bad at their job anyway.

Have you tried doing some reading about the common causes of this sort of thing, to see whether the patterns fit you at all? I'd start by googling PCOS. I have absolutely no idea whether it's common in POTS. I'm more familiar with ME, where hormonal disruption is pretty common. I think it might be the case that hormonal stuff and ANS stuff frequently occur together?

I remember being diagnosed with migraine-with-aura when I was in my late teens, purely because I'd said to the specialist, on being asked if I experienced any warning signs, "Well, I feel migrainish." I don't think I do have aura, actually. Most of it was a sort of strange dizziness, a fuzzy feeling, that I always get around my period. It doesn't necessarily herald a migraine, it's just how I feel around then. Photophobia tends to go with.

I just spotted the snag with this whole idea of using fruit juice (incl. tomato) as a basis for an electrolyte drink. Watch out if you have any medical condition which won't be keen on the acidity. In my case, the Interstitial Cystitis was Not Impressed At All. Ow ow ow.

When I did that poll about other medical conditions recently, I noticed that about a third of us here have migraine. I wonder what proportion of that is menstrual migraine? I've been getting menstrual migraine since I was 15, and that's when my other health problems also started. I also developed PMDD about five years ago. Puppylove - what diagnosis have you been given for your menstrual cycle irregularities? PCOS, anything like that?

Interesting ideas, but how would they stop me from falling over when, say, someone helps put my socks on? Could you explain more about how this works?

Maybe the oxytocin released by orgasm doesn't kick in until afterwards, at the point when people feel relaxed, rather than actually during orgasm? So I doubt it's the oxytocin causing the tachy. Adrenaline sounds more like it.

I bought a carton each of tomato juice and orange juice, and decided to start with the tomato juice. If nothing else, the naturally higher concentration of sodium and potassium means I will need half as much to get the same effect, so it works out cheaper. Thankfully it's quite tasty, and it works well to have half a cup at a time, diluted with another half-cup of water. Here's what I've slung together for two days' worth, do the proportions look right? I'm not entirely sure how much sugar you need in there. 1 litre (4 cups) tomato juice 1/2 tsp sea salt 1/2 tsp low-sodium salt (half sodium chloride, half potassium chloride) 1 tbsp molasses According to my dieting software, 2 cups of that per day would give me 127 calories, 2,650mg sodium, 1,625mg potassium, 26g sugar, 90mg Vitamin C, and substantial quantities of Vit A, Vit E, B vitamins and minerals.

I've been doing low-sodium salt (equal mix of sodium and potassium) in herbal tea (the ones with a bit of licorice work best), but I'm crap at making it up often enough. I'm going to try the orange juice method, and since that sounds potentially vile, I'm planning to try tomato juice as well. Smidgen more potassium in it, and I suspect will work better with salt. Should I be adding a wee bit of sugar to the tomato juice, and if so, is molasses a good option? Plenty of minerals in that as well. Also tomato juice is already quite high in sodium, should I adjust accordingly? Perhaps by adding the same amount of salt (maybe partly low-sodium salt), but only having half the amount of tomato juice as you'd have of orange juice? I'm too broke right now to go through a litre of tomato juice a day.

I'm sorry to hear that your mother's abusive. It's sadly common in people with disabilities/chronic illness.

I tend to get this when I'm quite bad, so it'll go with increased cognitive difficulties. It also means I don't form memories well because my brain's only partly there, so it's harder for me to remember exactly what it was like and how long symptoms went on for. I've noticed that I tend to close my eyes when it's happening in order to reduce the sensory input. I don't keep trying to do an activity for very long when this hits, it's a sign that I need to get into bed fast, so I don't know how long it goes on for. It was other folks getting the floating sensation and feet being sucked through the floor, not me. What do other people experience in this respect? Autism folks are more keen on sending me for diagnosis (which is pointless, no one's interested in this aspect of ME and I'm sure I don't actually have an autism spectrum disorder) than helpful tips, plus everything seems to be geared towards young children, but they're sending me what they do have. I'm going to try the dyspraxia people next, that's another overlapping area, though again it probably focuses mainly on children.

I suspect there's a bias towards over-achievers because we tend to be very bad at resting sufficiently, and illnesses like these require huge amounts of resting. Plus the bias mentioned earlier whereby people who are interested enough in their illness to participate in a forum about it are more likely to be the go-getting type. It's why I get so infuriated when social workers accuse me of being lazy. I spent 8 years struggling to finish my undergrad despite getting sicker and sicker, I was doing umpteen things at once before I got ill and one of the highest-achievers in a very prestigious school - I'm seriously not lazy!

Do muscle relaxants help at all, out of curiosity? Baclofen is quite popular, and personally I use diazepam (Valium) in combination with co-codamol - for some reason they don't work for me separately, but do help when combined. I suppose it's possible that muscle tension could be contributing to this problem, although I am guessing wildly, should not be taken as a medical authority, nor should you think that I'm telling you what meds to take! I get weird situations with a sort of strange humming/vibrating sensation in my ears, combined with generally feeling crappity. I'm not sure if it's coincidence yet, but doing a spot of manual lymphatic drainage around my ears (search YouTube) seems to help for that. The neurologist sounds like a good move. I'm wondering about the possibility of a TIA (mini-stroke), but apparently headache isn't a feature of those, and isn't it meant to be the left side rather than the right? Best of luck, this sounds stressful.

Random virtual hugs are winging their way to you across the internet! I'm having a crappy time of it too at the moment. Telephone helplines can be great for this sort of thing. They're sympathetic, they don't have anything invested in whether or not you can prove your illness is physical or the weird kind of stuff you can get from family or friends, you don't have to worry about burdening them or what they'll think of you. Which country are you in? I'm in the UK, so just in case you are too, you can try the Samaritans 24 hours a day on 08457 909090, or Breathing Space (who are actually professionals and funded by the NHS) from 6pm-2am and all weekend on 0800 838587. Go and have a good grumble at someone, it sounds like you need it!

Yes, I meant autism spectrum disorders. Some of the neurological symptoms which you can get with ME, and I'm gathering with POTS too, are the same as symptoms experienced by people with autism or Aspergers. This includes problems with light and sound, and it seems that this issue falls into that category as well. There are various learning disabilities which also overlap here, such as Auditory Processing Disorder (which I've had since birth) and dyspraxia.

Oh yes, I switched all that stuff over years ago, my skin wouldn't have it any other way. I'm quite ludicrously fussy about shampoo, soap and so forth, and a friend of mine was very puzzled recently to learn that I wash my face using olive oil! I'm in the UK, though, so different products to what you have in the US. If "personal hygiene products" means stuff for periods, I've been using cloth pads for years, though if the vulvodynia improves I have wild hopes of being able to use a menstrual cup again.

Sensory integration disorder? Interesting. This is starting to look like one of those areas which overlaps with autism spectrum disorders. I'm wondering with the ASD folks might have useful resources about this kind of problem.

You're not hateful and selfish, hon, you're living with a chronic illness and that's highly stressful. Maybe chat to a counsellor, or even a random telephone helpline, and get some of the stress off your chest in a way that's directed at someone who volunteered for the job rather than your family? Are there some nice pampering things you can do for yourself?

I have, but I am far too brain-dead to comprehend medical stuff right now. I had googled vulvodynia and antihistamines yesterday, and basically found a few places saying "yep, works for some people", though they were mainly talking about itching. I'm still cautious as one month isn't enough for serious data, and I'd tried a progestogen-only pill for a week a month earlier which may have altered things (still getting random bits of breast pain at times when I wouldn't expect it), but it certainly looks promising and makes sense. I'm guessing that it's the magic combination thing. For instance, neither co-codamol nor diazepam do a thing for me for muscle pain or migraine if taken alone, but if taken together, they suddenly work (and knock me for six - not one to be taking regularly). In fact, I can often get away with a lower dose of each than I'd use normally. Prior to this, I'd tried cetirizine 10mg daily, and I'd separately tried 10mg alimemazine daily. The latter seemed to be causing side-effects, can't quite remember apart from nightmares (which I got on another H1, promethazine I think), but anyway enough that I'd come off it and gone back onto the cetirizine, which wasn't quite enough but better than nothing. Then I saw the dermatologist, who wasn't interested in looking for mast cell problems and told me that dermographism doesn't cause itching (at which point I lost faith in her, because that is plain wrong), but who did at least wax lyrical about the fun you can have trying different antihistamines together, and how she'd write to my GP about this. Still haven't heard back from the GP, but since I had both alimemazine and cetirizine sitting about the house, I decided to try them together, only this time cutting the alimemazine in half as I know that I don't do well on the full dose. Normally I get vulvodynia starting a few days before my period and going on for 5-6 days total, at least the bad stuff, with occasional milder symptoms the rest of the time (depending on what I'm up to), at least that's been the pattern for a good few months now. This time I got no pain whatsoever. Are there any particular problems with taking 20mg cetirizine? I tried googling it, because 10mg doesn't do enough for me, but couldn't really find anything. I still get problems with itchy skin on and off, for instance. Is it a particularly high dose or scary drug?

When I did that poll on other medical conditions, which is around somewhere, about a third of people said they had ME/CFS. The hallmark of ME is exercise intolerance, so that would fit quite well with the number of people in this poll who can't exercise. I would hazard a guess that the ones in this poll who can't exercise are the ones with ME, and the ones who can exercise are the ones who don't have ME. Follow-up poll, anyone?

Angela - thankfully I never learned to drive, but I find that crossing the road is a nightmare, and I have immense difficulty seeing the cars. Do you reckon it's part of the same phenomenon? They're both unpleasant and disorienting, but one is about things right up close to me, and the other is about things further away from me.

Oh yes, walking can be even worse. All those people moving around near you, and the light, and the noise. I've conked out from merely being pushed around a hospital in a wheelchair, come to that, and feeling physically disoriented from the people around me was a big thing.

Glad to hear it, and very interested too. I can't find anyone locally who knows about mast cell problems, but they want me on antihistamines for other reasons (dermographism - which is, of course, itself a symptom of masto!). I tried various antihistamines one at a time, and 3 1/2 weeks ago started cetirizine 10mg together with alimemazine 5mg (I seem to tolerate half a tablet but a whole one had been odd), the first time I'd done a combination. I had no pelvic pain this month (it seems to be cyclical) and had been trying to figure out why. If mast cells could be involved, suddenly it all makes sense! My other pain levels have been lower too, now I think about it. This is rather exciting.