dianne.fraser

Ellie I'm so sorry to hear of this terrible experience. As patients, we aren't trained to deal with this kind of disbelief or arrogance from the people who are paid to deliver us care; we're certainly not trained to deal with a total disregard for our wellbeing. I agree that we have to advocate for ourselves, and to follow our instincts with new treatments, but this can be difficult when we're at our sickest and most vulnerable, and we're dealing with people in positions of authority. I really hope that you find good medical care and that, in the meantime, you're being well cared for by family or friends. With best wishes Dianne

Dani I agree with Issie - it sounds as though a good endocrinologist might be able to understand this better than a cardiologist. Re the anaemia - I develop anaemia every time my illness worsens. Anaemia can have many different causes, so it needs to be properly investigated, but I think that there is an 'Anaemia of Dysautonomia' that is experienced by many of us - a version of the anaemia of chronic disease. My anaemia can't be fixed by just throwing iron at it, in fact this generally makes me much sicker. To resolve my anaemia I have to stop whatever has aggravated my illness (eg exercise, overwork, a new medication), go onto bedrest for a couple of weeks, do all the things that soothe my illness and take a really low dose of the most gentle organic iron. Good luck and best wishes Dianne

Hi Sarah I'm sorry to hear that your illness is so debilitating right now, and that you're having trouble finding medical care. It really is important for your illness to be properly assessed - on the DINET website there is a 'physicians list', with these doctors having been recommended by other people with dysautonomia. A few Canadian doctors are listed (in Quebec and Ontario). There is a wide variation in peoples' experience of dysautonomia - perhaps because there are many different types of the illness. Some people have found an underlying cause, such as mast cell or mitochondrial disorders. Some of the people on this website seem to be doing well on medication; others (like me) rely on non-drug approaches. My illness is managed with increased fluid intake (I don't have thirst, so I schedule fluids at regular intervals through the day), compression stockings, increased salt intake, rest, restricted physical activity (some people need to exercise to help maintain function; I just get sicker and more debilitated), restricted carbohydrates, and ginger and peppermint (for nausea). For the neck soreness and the soreness I get at the back of my head, I see a neurological physiotherapist and a cranial osteopath about every second month. When I have night sweats, I stop them with a small dose of infant ibuprofen at bed-time. My illness worsens if I don't use these approaches, or if I do anything to aggravate it eg overwork, exercise, lack of rest, air travel, a bowl of spaggheti or a sandwhich. Every so often I'll stumble across something else that helps. The latest thing I've added to my management is further restriction of my carbohydrates - I used to limit my intake, but now I have shaved them back as far as I can. I'm not diabetic, pre-diabetic or (unlike many on the website) hypoglycaemic. I haven't been this functional in years. I'm hoping to see a metabolic specialist to consider the possibility that my dysautonomia can be sourced to a failure in my carbohydrate metabolism. Good luck with the search. I hope that you find care soon. With best wishes Dianne

Lissy I was often under-weight before my diagnosis - since then, I've gained a bit. No-one would call me plump, but I've got curves now. I don't feel thirst either. Its something that I first noticed at 18, when I was a junior nurse - it was part of my job description to badger patients to drink more, and yet sometimes as I climbed into bed at night it would cross my mind that I hadn't had anything to drink at all through the day. I really thought that the need for fluids had been grossly exaggerated. I wasn't diagnosed for another 25 years - by then, I was so sick that I was willing to do absolutely anything to feel better. Drinking was something that I struggled with. The evidence suggested that I should drink around 2 litres per day, but I had no idea how to go about it - there were no instructions for people who had never had much of a fluid intake. In the end, I realised that other people drank at breakfast, morning tea, lunch, afternoon tea, dinner and again sometime before going to bed. I no longer measure my fluids, I just drink a glass of water (before eating) on waking, then at 9am, 12 noon, 3pm, 6pm and around 7.30-8pm. I actually feel much, much better for being hydrated. Re hunger - I recently did a disastrous carb challenge, and I noticed that on the day that I ate two carb meals I had no hunger at all. I also felt extraordinarily fatigued. I'm a chocoholic, but I was so sick that I've pulled my carbs back as far as I can take them - I haven't eaten chocloate since. Its taken almost two weeks to recover, but I'm much more functional now and I've noticed that I wake up every morning hungry, and I feel hungry at appropriate times during the day. This might not be helpful for you - there are big differences between us all, as well as big similarities. I do hope you work it out - let us know how you go. With best wishes Dianne

My illness is exacerbated by overwork and lack of rest (among other things). I crawled on my hands and knees through two degrees and ended each a total wreck, but I have no regrets. I pulled out of a third degree, which I was doing part-time, because I was too fatigued to keep up with both work and study. BUT my illness was undiagnosed at the time - maybe if I'd had a clue about how to manage my illness, I wouldn't have been so fatigued. I currently work full-time in health policy. Its a desk job, but my work still needs to be restricted because of my illness - I can't fly out to meetings, and attending meetings locally is difficult when my panic attacks are really active. I now buy four weeks of extra leave each year so I can rest in the hottest and coldest months, when my body copes the most poorly. I can't overwork (as I would need to under normal circumstances) because I no longer seem to recover all of my functioning after an exacerbation. My fatigue levels are often so high that I almost never know that I'm anaemic before I'm forgetting meetings and and deadlines, and generally under-performing at work. I rest most weekends so that I'm fit to work another week. Periodically I become exhausted and I'm referred back to one of my Department's case workers who checks whether I'm ready to consider a partial invalidity arrangement - nope, not yet. Working isn't for the faint-hearted with this illness. I think that if you want to study, then do it. You know your limits - you can probably find ways to work within them and organise things so that you don't exceed them and become exhausted. If you become exhausted, you'll know to stop. It might not be a waste of time or money if you start with one unit and see how you go. It might be the best thing you've ever done. As for work, follow your instincts. As long as you understand your illness - how to manage it optimally so you can prevent exacerbations - work might add another really valuable dimension to your life. With best wishes Dianne

Starby I went on my lunch-date today. Had a lovely time. Ate salad. He wanted to know about my illness, and I was honest about it - I told him I spend long periods of time doing nothing but resting on weekends so that I can make it through another working week; that I live like a hermit; that I have two months of rest every year; and don't get out much. Well, he DID ask. I think it was difficult for him to grasp because I'm having a 'well' day - I don't look as though I'm in bad shape physically, and I'm not aging quickly or badly despite my illness (go figure). Anyway, he knows that next weekend I might be back on bedrest again. He wants to see me again. He wasn't deterred by my illness, but I can understand that other men might have been. We just enjoyed eachother's company. We talked about a lot of things, not just my illness, but it would have been difficult to have an honest conversation with him without a basic level of disclosure eg he wanted to know whether I like flying.... (I don't mind flying, but I'm bothered about dry retching in the airport lounge after landing and then being completely wiped out for days afterwards). Disclosure is difficult - even for people who are well - but I think that most people like a bit of honesty. And I also think that people need to be able to answer us, honestly, that they don't believe they can cope with our situation. If thats the case, I like to let people go with a blessing. I think its ok for all of us to be honest. I've heard amazing stories of people finding friendship, companionship and love in spite of life situations that were not conducive to any of these. Most people find it hard to walk away from someone they have good chemistry with and a strong emotional connection, even if they have to climb a mountain for it. I hope your next date is wonderful. Dianne

Funny you should mention this - a nice man called me last week and asked me to lunch. After chatting, he said 'no, lets have dinner'. I wasn't sure what to say - 'I'm sorry, I need to be laying down by 8.30pm'??? I told him that I'd rather have lunch. I'll need to be careful about what I eat, because I don't want to spend the time in a carb-induced stupor..... I didn't give him my medical history. Its just lunch. We're not getting married. I don't usually go on dates - heck, I don't get out much at all.... If men call me, I usually say 'Thank you but no'. Its my line - no explanation required; they can let their imaginations run wild with the reasons I don't want to spend time with them. I didn't use my line with this man because I really enjoyed our conversation and I really would like to see him. I've accepted that I'm never going to have a normal relationship - obviously, if thats what he's looking for, he'll be disappointed. I'm not concerned about this - no-one dies from disappointment and I'm sure he's had lunch with other women and come away feeling that he didn't want to see them again. I think its part of the dating process. Maybe I won't want to see HIM again. I intend to enjoy his company tomorrow and to be honest with him without spending the whole time talking about my illness. There are much more interesting things to discuss. I'll pm you to let you know how it goes. With best wishes Dianne

The first dysautonomia doctor I saw told me that I had already maximised my functioning (obviously) because I was still working and I wasn't on medication. I was just barely functioning, crawling to work on my hands and knees and facing the loss of my job and my home. I had exacerbated my illness flying inter-state to see him, and he left me in absolute despair. He didn't give me even the most basic information about how to improve my quality of life - I have no thirst, and I'd always had poor fluid intake. He could have changed my life just by telling me to drink more, but he didn't. I realised later that he had an interest in one specific type of dysautonomia (which I don't have) - he wasn't really delivering care, so much as recruiting for his next research project. Specialists (even dysautonomia specialists) are not created equal. I agree with you PotsMom, having a good GP who cares and takes an interest is absolutely critical. Every time I see my GP, she reminds me that she doesn't know much about dysautonomia, she's just having to manage me intuitively. Its working well so far, and I'm really grateful for her care.

Nela Sorry to hear that you're so unwell. It might be that the extra carbs from the chocolate have knocked your blood sugar out of whack. I've been barely functional for the past week following a carb challenge - my doctor gave me a glucometer and I ate carbs to see what would happen to my blood sugar. My blood sugar was fairly stable in the hours after carbs (not what I was expecting), but I felt incredibly drained and each morning I found that my blood sugar on waking was a little higher. My doctor called it off on day four when my blood sugar on waking was too high. I've been so sick that I've only eaten sugar-free chocolate since.... (I'm really missing the lindt dark chocolate with chilli). I hope you're feeling better soon - let us know how you go with the magnesium. With best wishes Dianne

Hi Jenny I have all of the symptoms you mentioned, but I only collapse post-exercise. I collapsed while on a holter monitor and it showed no abnormalities at all and, like you, there were no abnormalities during other cardiac investigations (apart from ventricular ectopics and a bit too much fluid around my heart). It was only when my blood pressure was measured while I collapsed that it became clear that my blood pressure was dropping suddenly while my heart rate stayed absolutely constant. Based on this, I was diagnosed with cardioneurogenic syncopy two years ago (cardioneurogenic syncopy is one condition among many on the spectrum of dysautonomia). I'm not sure that I got an accurate diagnosis, but I'm satisfied that my cardiologist managed to put me on the right disease spectrum. The diagnosis has led to much better management of my illness, and I'm more functional than I was. I suggest that you try having your blood pressure taken during and after a collapse. With best wishes Dianne

Thank goodness - you had me worried....

Garrett The problems with my memory left me feeling really scared at first too. I hope that you are surrounded by a supportive family and that your doctor is reassuring. With best wishes Dianne

Garrett I'm sorry to hear that you've been having problems with your memory - yep, its something that can really freak you out. For a number of years, before I was diagnosed, I had two cycles a year of anaemia during which my memory collapsed as my iron dropped. I would go to the printer at work and find five copies of my documents - as soon as I'd hit 'print' I'd forgotten I'd done it. I would also forget meetings - just not turn up.... I actually got to the point, during each cycle of illness, when I would fail to recognise people I really should have known. For some bizarre reason, I would fail to recognise faces. Yep, very odd. Anyway, I know you've been really tired lately, has your doctor checked you for anaemia? Just a suggestion. Dianne

Julie I take infant ibuprofen - between 10-20ml at bedtime. I'm sitting here with the bottle - there is 100mg of ibuprofen in each 5ml of oral liquid. The first time I took it, I still got a night-sweat but it was much milder. The second time (and thereafter) the sweats stopped altogether. Good luck Dianne

Maxine I'm so sorry you're so unwell. I have absolutely no idea how you managed to be upright with a BP of 83/74 - I slump over when my BP is that low. I'm getting hot flashes too right now, and I think I've finally hit menopause - its hideous. I'm hoping that Dr Grubb will help you. Please let us know how you go. With best wishes Dianne

I'm with you Persephone. What do I miss most? - exercise: I used to love power-walking around the lake, then going to the gym and slipping straight into my squats - ahhhh. - being in shape - having a career - a social life - knowing my family: I don't see anyone much anymore - the normal milestones of adulthood, like marriage and children - the endless possibilities of wellness

Nowwhat I don't have POTS and I don't know whether my illness has an auto-immune cause. I tend not to have non-symptomatic times, only times when some of my symptoms sleep. I have what I call 'exacerbations' - usually times when most or all of my symptoms are active, my active symptoms are more severe and new symptoms can emerge. I'm always anaemic during these times and my night-time respiratory symptoms recur. My exacerbations have mostly been caused by over-work, lack of rest, too much activity or medication that didn't agree with me. I deal with them by stopping whatever is aggravating my illness, going onto bedrest and doing all of the things that soothe my illness. My exacerbations have usually lasted as long as it takes for me to address them; it has usually taken 2-4 weeks to recover pre-exacerbation functioning. I actually used to trade over-work for exacerbations because I was confident that I would bounce back with two or more weeks of bedrest. My last period of over-work, however, was followed immediately by successive infections - a stomach bug, then chest infection, laryngitis, tooth abscess, sinusitus, conjunctivitis and then tonsilitis, which recurred twice.... Instead of recovering with bedrest, I kept going down-hill and, for the first time, my bladder started to fail. To be honest, I was fairly hysterical - it wasn't clear that I was going to regain any of my pre-exacerbation functioning. I've recovered somewhat in the last 18 months, but I haven't regained all of the functioning I lost. My focus now is on daily management of my illness, and on preventing exacerbations. With best wishes Dianne

I've had a sensation that might be equivalent to the 'fizzing - to me, its like the sound of tinkerbell appearing in peter pan movies (the sound of chimes), only a sensation. If you know what I mean. Its something I've only mentioned to my neurological physiotherapist - she hears these things from her patients all the time. I haven't discussed this one with my doctor because she's baffled enough as it is and, really, its one of the few symptoms I don't mind. I usually get it in my legs, but I've had it up the back of my head as well. I figured it had something to do with circulation or blood sugar. With best wishes Dianne

Shan I get respiratory symptoms at night during exacerbations of my illness - sometimes I've woken gasping for breath, as though my body has forgotten to breathe; sometimes it feels as though I'm trying to suck oxygen out of a thick fog; sometimes, as I'm drifting off to sleep, I become aware that I'm not breathing; and sometimes I wake in the morning feeling oxygen-starved. When my symptoms are at their worst, I often have dreams about suffocating or drowning - many years ago, during one of these dreams, my boyfriend at the time was trying to wake me because I wasn't breathing. My respiratory symptoms come and go, depending on how well-controlled my illness is. I've had a sleep study, and I wasn't symptomatic enough at the time to show more than a few harmless hypopnoeas. As long as you're symptomatic at the time, a sleep study will generally capture any respiratory problems - this is something you could discuss with your doctor. Good luck and best wishes Dianne

I had almost 20 years of night sweats starting in my early twenties (not related to menopause) and when I didn't have the sweats, I would often wake at night burning hot. I slept naked in an unheated room all this time, even when temperatures outside were well below freezing. Like Janet, my night sweats/over-heating were stopped with a small dose of ibuprofen at bed-time. I'd go off it every now and then to check whether the night sweats would return - they seemed to stop 18-24 months ago. I restarted the ibuprofen a few days ago because I'm over-heating again - this time it might be menopause. On the whole, I've found that night sweats/over-heating increase my fatigue - my illness is much more controlled without them. With best wishes Dianne

Julie and 1fastnurse My experience might not be relevant, because I don't have POTS - I have general dysautonomia symptoms (fatigue, nausea etc etc) and post-exercise collapse of my blood pressure (while my heart rate stays completely steady). My cardiologist called it cardioneurogenic syncopy. Not exercising keeps my blood pressure from collapsing, but doesn't stop the rest of the symptoms. Anyway, I always felt fantastic during exercise (it was the only time I ever felt fantastic....), but had a big loss of energy immediately afterwards (along with the need to sleep for several hours), followed in the days afterwards by a worsening of all of my symptoms, particularly fatigue and heart symptoms (eg irregular heart beat and chest pain). I didn't usually become breathless, but I would feel as though I was trying to suck oxygen out of a really thick fog. I would become less and less able to sleep on my left side - it would feel as though I wasn't getting any oxygen at all. The effects of exercise seemed to be cumulative - increasing symptoms with continued exercise. I've tried different types of exercise, including walking, very light weights, theraband, swiss ball, various floor exercises (including yoga flat on my back) - even light exercise seems to aggravate my illness, beginning with a build-up of chest discomfort (it feels as though someone has stuck a garden hose in my chest and over-filled my chest cavity). Most importantly, my iron collapses with exercise, and I'm not able to resolve my anaemia without at least two weeks of bedrest. I know that we're supposed to keep exercising because of the danger of deconditioning, but I honestly don't think I would still be working if I had not stopped exercise. With best wishes Dianne

I've lowered my standards - I accept that I can't do a lot of cleaning. If I do the vacuuming, I accept that I'm going to need a day in bed. These days, I do weekly basics (clean my bath, do my washing and clean my kitchen), and leave the rest for a time (like now) when I've got a month off work and I can take as much time as I need in bed when I'm done. I agree with Potsgirl - a cleaner is the way to go, if the finances can stretch that far. With best wishes Dianne

Bev I'm sorry to hear that you're so unwell right now. I also have periods of insomnia and normal sleep interspersed with sleeping too much. I tend to over-sleep when I'm much more symptomatic generally, but never more than 14 hours at a stretch, and I always feel much better afterwards - I figured that sleep was my body's way of getting back into balance. I'm much more likely to lay awake after a night sweat or after over-heating without a sweat - if these problems recur, I stop them with ibuprofen (I've started over-heating again, so I picked up some ibuprofen today). Way back before I gave up exercise, I also had post-exercise collapse (I'd slump over without losing consciousness for 5 min or so) which was always followed by the overwhelming need to sleep - I literally couldn't keep awake, even if it was 10am and I'd just had a full nights sleep. I'd usually sleep really deeply for 4-5 hours. With best wishes Dianne

Nmorgan I'm sorry to hear about your sleep problems - it can be absolutely agonising to be exhausted, but become totally alert at bedtime and lay awake for long stretches. It makes for a very long night. I get periods of severe insomnia, but since my early twenties they've mostly coincided with a worsening of my overall symptoms - if my illness is on an even keel, I sleep really well and get no night-time respiratory symptoms. Are you doing anything new right now that might be aggravating your illness eg exercise, medication? I hope you sort it out soon. With best wishes Dianne

Garrett My hottest tips for managing dysautonomia-related fatigue are: General dysautonomia management: fluids (drinking at least every three hours; some people find sports drinks really helpful); putting salt on your food; compression stockings (not the coolest look); if the weather is hot, try to stay cool; if the weather is cold, try to stay warm; get plenty of rest and plenty of unbroken sleep; eat a healthy diet with reduced carbohydrates Treat symptoms that can be treated: eg panic attacks; nausea; night sweats; neck soreness/soreness at the back of the head - these symptoms are very treatable in some people, and can add to fatigue if they're not treated Manage any allergies: sometimes allergies can increase fatigue Finally, avoid things that aggravate your illness: it can take a bit of trial and error to identify these, but the list might be headed by 'lack of rest', and 'too much activity or exercise'. Good luck and best wishes Dianne