dianne.fraser

I had surgery 6 or 7 years ago - it didn't seem to aggravate my illness, but I had a lot of trouble waking up afterwards. Hours after coming out of surgery, the nurses were still giving me a gentle shake and telling me that I needed to try to wake up.... Dianne

Hi Nicole. I don't have POTS (I was diagnosed with cardioneurogenic syncopy), so my experience might not be relevant.... I think you're right that it would also affect your BP. I can't fast because I also have issues with blood sugar - going without food makes me very, very unwell. I did a couple of meditation retreats that involved fasting, and they really aggravated my illness - it took many months to recover afterwards, and I didn't get all my functioning back. I did a vision quest for women in the Australian bush many years ago, and we DIDN'T fast - the idea was that women had a different set of requirements to men. This might not be the traditional American Indian approach for womens' vision quests (although I thought that it was) - but the experience was really profound and uplifting, and I didn't need to be starving and dehydrated to get a lot out of it. I'd recommend that you follow your instincts, and perhaps discuss your issues with the vision quest coordinator. Dianne

I agree Yogini - if the autonomic nervous system is malfunctioning, it stands to reason that it might not be properly regulating carbohydrate metabolism. I think that doctors are often staring so intently at our hearts, that everything else is secondary, or not considered at all, or considered to be unimportant or imaginary. I was diagnosed with dysautonomia by a cardiologist based on the post-exercise collapse of my blood pressure - I had no idea that I was also supposed to have an endocrine assessment, and neither did my cardiologist. Until I joined this forum, I didn't know about the endocrine aspects of dysautonomia, and I didn't know that dysautonomia is considered largely a secondary disorder for which a primary cause can sometimes be found. According to my endocrinologist, given my family history and my own medical history, my dysautonomia could have been caused by any of a number of rare metabolic disorders. I'll let you know how I go at my upcoming appointment. With best wishes Dianne

Yogini Good news that you've found a simple way to boost your energy levels! Trust your instincts re blood sugar - normal blood sugar findings don't necessarily mean that all's fine with your carbohydrate metabolism. After limiting my carb intake over many years to manage my fatigue, last year I did a carb challenge over a number of days which showed abnormalities (despite normal findings on annual blood sugar checks over six years). My GP and I had agreed to a week-long carb challenge to check for reactive hypoglycaemia. I was provided with a practice glucometer, and training/support from the practice nurse, and told to challenge myself with big carb meals, take 'regular' blood sugar readings and report back after a week. I took hourly blood sugar readings from waking. My blood sugar failed to swing either high or low in response to carbs, even though I felt increasingly disabled, BUT I woke each morning with blood sugar that was higher than the morning before. On day four, my GP stopped the challenge because I woke with blood sugar in the diabetic range. I had thought that nothing measurable was happening in response to carbs because of my normal results on the usual blood sugar checks but, really, there was nothing measurable happening in the standard timeframe for a glucose tolerance test or a 'moment in time' assessment of fasting blood sugar. After seeing an endocrinologist before Christmas last year, its now queried whether a genetic metabolic disease might have caused my dysautonomia - I've been referred on to an adult genetic metabolic diseases unit, and my appointment is on 3 March. Meanwhile, I've cut back my carbs even further, and my fatigue levels are now lower than ever before. Unfortunately, it hasn't mean't that I can be more active, but losing much of the fatigue has improved my quality of life dramatically. With best wishes Dianne

I bought some turmeric today - I'll give it a try. I'm actually at my most well at present following five weeks of scheduled rest, but I'm back to work on Tuesday next week and I'll happily try anything that might help prevent a downhill slide before my next scheduled rest in July. I'll let you know how I go. With best wishes Dianne

Oh Tennille I'm so sorry you and your husband are having such a hard time. My thoughts and prayers are with you. Dianne

Hi. Yes! I get the same thing during exacerbations of my illness - I'll dream I'm suffocating and wake up feeling oxygen-starved. It first happened to me more than 20 years ago when I had a vivid dream that I was drowning. My boyfriend at the time was panicked - he'd been woken when I'd made weird noises in my sleep, then I'd stopped breathing and he struggled to wake me. My night-time respiratory symptoms are the most frightening of all my symptoms - at one stage I genuinely believed that I would die by suffocating while I slept. Apart from my suffocation dreams, I also sometimes become aware, right on the edge of sleep, that I'm not breathing. Other times I have woken feeling as though the muscles at the back of my throat have collapsed, cutting off my airway. These symptoms come and go with the ebb and flow of my dysautonomia. My last exacerbation was a couple of years ago and, while my recovery was very slow, I've been much more well over the past 6 months or so. Its probably been 18 months since I had my last suffocation dream - I dreamed I was trying to escape from someone, and I slid into a vat of grain, which completely covered me, making it impossible to take a breath. I've found that my night-time respiratory symptoms are relieved by rest and intensive general dysautonomia management, and (more quickly) by a one-off 1/4 dose of Lexapro. I had a sleep study in the past year or so, but it was conducted when I was reasonably asymptomatic and it showed just a couple of harmless hypopnoeas. I would really recommend that you see your doctor about the possibility of a sleep study to investigate what is going on with your respiratory system at night. Good luck and best wishes Dianne

Lance - I was diagnosed with cardioneurogenic syncopy two years ago based on the post-exercise collapse of my blood pressure while my heart rate stayed perfectly stable (it was captured using one of those new-fangled blood pressure cuffs that record blood pressure and heart rate). I'd had investigations before (all normal except for lots of ectopic beats) including two holter monitors which showed no change in my heart rate when I collapsed. If you want to confirm whether your blood pressure is dropping while your heart rate stays stable, perhaps you could buy a blood pressure cuff or borrow one from your GP, bring on an episode and take readings every couple of minutes. I wasn't sure about my cardiologist's diagnosis, but I'm certain that I have some form of dysautonomia. Knowing this, I've been able to learn to manage my illness. I only collapse post-exercise (so I'm fairly sure that my blood pressure is otherwise stable). My heart rate is sometimes very irregular, however, and I also spike reasonably high heart-rates that can take many hours to settle (after which my dysautonomia symptoms are much more severe for several days). Not exercising has eliminated the collapse and, along with a lot of other measures, stablised my illness. As long as I'm intensively managing my dysautonomia generally, most of my symptoms sleep. I didn't tolerate any of the daily medication options on offer - I tried beta blockers (Inderal and Minax), SSRIs (Arapax and Lexapro) and an SNRI (Pristiq). I've found dysautonomia easier to manage when I eliminate everything that triggers or aggravates my illness and when I take measures that soothe it. This awareness has been far more effective than any medication in getting my illness under control and in maximising my functioning. I understand that minor seizures can be a feature of dysautonomia. During an 18 month period when my illness wasn't well controlled I had a number of small seizures - for a few seconds at a time, everthing in my field of vision would quiver (at first I thought my eyes were quivering....). Good luck and best wishes Dianne

Dunky - I'm sorry to hear of your illness, but I'm glad that you've found the Forum and that you're searching for answers. There are many similarities and much variation among people with dysautonomia - my experience might not be helpful to you, but here is what I do to manage the symptoms we have in common: Horrible dandruff - I developed this symptom when I was maxing out on rice cakes 10 or so years ago, and it resolved when I cut my carbs..... Chest discomfort - it feels as though someone has stuck a garden hose in my chest and over-filled my chest cavity. This symptom is eased by rest (laying flat); as an alternative, a one-off 1/4 dose of Lexapro generally relieves it within 24 hours. Bloating - I'm allergic to maize starch, which is used as a filler in medications and vitamin pills and as a thickener in packaged foods. When I eliminated the maize, my bloating completely disappeared. Tinnitis - I developed this symptom as a side effect when I was trialled on Lexapro last year - it was hideous. It resolved when I stopped taking the medication on a daily basis. Fatigue - I avoid anything that aggravates my illness (eg exercise, flying, standing for too long, over-work, lack of rest, big carb meals, food I'm allergic to), I use the things that soothe my illness (eg plenty of sleep, rest - particularly laying flat, low carb diet), I take action to stay cool when the weather is hot and to stay warm when the weather is cold, I treat the symptoms that are treatable (eg infant ibuprofen for night sweats; gentle body work for neck soreness and soreness at the back of my head; ginger and peppermint for nausea; Lexotan as needed for panic disorder), I schedule fluids because I have no thirst, I wear compression stockings, and I have two months of scheduled rest every year. 27 years after my first exacerbation, I'm now less fatigued than I've ever been. When I'm managing my illness well, most of my symptoms sleep, including high heart rate and irregular beat. This doesn't mean that I get to the point where I can go back to the gym - I get sick very quickly when I do anything that aggravates my illness. Like others on the Forum I'm trying to source my illness in the hope that treating the underlying cause will make my dysautonomia more managable. An endocrinologist has referred me to a genetic metabolic diseases centre for assessment - she is querying whether my dysautonomia has been caused by a failure in my carbohydrate metabolism (irrespective of all other factors, I'm only functional as long as I avoid all exercise and keep my carbs really low). Finally, I understand that you are eating a healthy diet and taking vitamin pills - there was a time when I was being killed off by my healthy diet because I didn't tolerate the carbs in it, and by the vitamin pills because they were filled with maize starch. A lot of us have allergies and carb intolerance (mostly resulting in low blood sugar) - these may be worth checking out. It also might be worth considering whether any of your symptoms are side-effects of the medication you're taking. Good luck and best wishes Dianne

Tearose - I'm so sorry - I feel devastated for you. For some of us, our faith is the only thing keeping us afloat. My thoughts and prayers are with you. With best wishes Dianne

Friday - my heart goes out to you. I'm so sorry that life has been so hard on you. I have no useful words of wisdom for you - like you, I'm single, I have no children, I've gradually lost almost all contact with friends and I'm a stranger to my family. People I used to know well have moved on with their lives, while I feel frozen in time. I guess I'm saying that, although you feel alone, you are not alone in this particular experience. I wish I could ease the burden of it (for either of us). I can't imagine how worrying it must be for you that your mother has lost heart - I hope that you are able to find the support and advice you need to cope yourself and to provide support to her. With best wishes Dianne

I avoid things that aggravate my illness - exercise, physical activity, over-work, lack of rest, high-carb foods; flying, extreme heat or cold, being on my feet for too long. I'm aware of (and use) the things that soothe my illness - rest, particularly laying flat (including two months of scheduled rest each year); sleep; physical inactivity; low-carb diet; regular fluids (I have no thirst, so I schedule my fluid intake); compression stockings. I take active measures to stay cool when the weather is hot, and to stay warm when the weather is cold. I treat the symptoms that are treatable - gentle bodywork for my neck soreness and soreness at the back of my head (I see a neurological physiotherapist and a cranial osteopath); infant ibuprofen for night sweats (when they recur); peppermint and ginger for nausea; a one-off quarter-dose of lexapro if I experience night-time respiratory symptoms or chest discomfort that doesn't resolve with rest; lexotan as needed for anxiety and panic attacks. I listen to my body - I no longer ignore signs that I'm going downhill. If my condition is worsening, I go back to basics, managing my illness intensively and eliminating any new medication, food or approach that might have caused the downhill slide. I always heed my anaemia - when it recurs, it is the clearest sign from my body that I need to lay down. I no longer fight my illness - I have high levels of endurance, so I can keep going long after I should have gone onto bedrest but, 27 years after my first exacerbation, I understand that endurance is punished with symptoms that are more intensive and prolonged. I'm as patient as possible following an exacerbation or any kind of infection - my recovery tends to be very, very slow, but my functioning returns if I persevere with all of the above. When I tend to all of these things, most of my symptoms sleep or are significantly reduced. Finally, I understand that the people most likely to get on top of their illness are the people who source their dysautonomia to an underlying cause - I continue to look for the underlying cause. With best wishes Dianne

Sarah - the anaemia of chronic disease (or the anaemia of inflammation) is an indicator that the body is struggling with inflammation, usually from an underlying chronic condition. In order to relieve the anaemia, you treat the underlying condition. Like you, my haemoglobin is always normal, but my iron falls rapidly when my illness gets out of hand (followed by a drop in my ferritin). I understand that throwing iron supplements at this type of anaemia can be counter-productive because iron exacerbates inflammation ie you can set up an inflammatory response, and get much, much sicker. Now when I'm anaemic I work much more intensively to ease my dysautonomia, beginning with going onto bedrest (and stopping anything that might have aggravated my illness, such as overwork). Although this type of anaemia is an indicator of poorer health outcomes, I've made friends with it over the years - it tells me when I MUST lay down and tend to my illness (in fact, you could say it INSISTS). My failing memory is just the trigger for a visit to the doctor to check my iron. Dianne

I once walked into my bathroom to have a shower, and I realised that my towel was wet - I'd had a shower in the previous 10-20 minutes, but I'd forgotten.... Severe memory loss always indicates that I'm anaemic. If my iron is low, I go onto bedrest asap as this is the only thing I've found that resolves it. Odd but true - iron supplements actually don't resolve the type of anaemia that I get (the anaemia of chronic disease). With best wishes Dianne

Tennille - it is so heartening to hear about the positive experience you've had with this doctor. Keep us posted on your progress! With best wishes Dianne

Jonathan Good to hear that you're still alive and kicking! I was glad you tried the Octreotide, but afraid that it had finished you off. It sounds as though you've had a cold pressor test - it is listed in the NDRF patient dysautonomia handbook included in Mighty Mouse's resources on this site under 'Frequently asked questions - help yourself to answers'. Stay in touch and let us know how you go with other testing, and with diagnosis and management. With best wishes Dianne

Hilbiligirl - I feel devastated and horrified at the treatment you received from this horrible doctor. I hope you are surrounded by loving, nurturing people right now - I know that it can take a while to recover after a consultation as brutal as this one. I don't understand how these doctors can justify holding out their hands to us for payment after delivering such ignorant, inadequate care. I feel certain that better care is coming for you. With best wishes Dianne

Ken I can't comment on the wheelchair or on flying in the US, but I CAN tell you that flying can really aggravate dysautonomia. I'm fine in the air, but on landing I tend to get overwhelming fatigue and nausea that stays with me for at least 24 hours. I think that others have posted some good tips previously re flying - it might help to search the Forum for previous posts. Good luck with your appointment and best wishes. Dianne

Lissy I'm sorry to hear that you're having to cope with so much right now. The multiple-infection-thing has only happened to me once. My illness was aggravated when I was assessed for dysautonomia, then I over-worked for six weeks, taking on a second full-time workload while my director was on holidays - then I caught a nausea/vomiting bug, which turned into a chest infection, then laryngitis, then a tooth abscess, then sinusitis, then conjunctivitis, then tonsilitis (which recurred at least twice). My health degenerated really rapidly with each infection, and I made the mistake of continuing to work - I had perfect faith that I would recover with two weeks of bedrest, but it didn't turn out that way. The trouble is that my levels of endurance are so high that I have always been able to carry impossible workloads and keep going no matter how I felt. By the time I took time out to rest, it was like trying to turn around the Titanic - it took around 18 months to get my dysautonomia under control again and to recover my functioning. I'd really recommend that you do everything possible to contain the infections, and to manage your dysautonomia as intensively as possible - avoid anything that aggravates your dysautonomia right now and do everything you know to soothe it. I also hope that you see a dentist asap to deal with the tooth abscess - I now see my dentist twice every year so that problems can be caught and addressed as early as possible (even before I know they're there). Good luck with your appointment! With best wishes Dianne

Sue I haven't yet been assessed or diagnosed with a metabolic disease. The metabolic specialist I saw before Christmas is referring me to an Adult Genetic Metabolic Diseases Unit, and she wants to come with me to consult a metabolic geneticist before making a decision on what I should be screened for. Apparently there is a series of conditions affecting carbohydrate metabolism at various points in the process, some of which are characterised by dysautonomia and some of which cause dysautonomia if they're not managed. The specialist rattled off a list of possible conditions, only one of which I'd heard of - glycogen storage disorders (one of which is characterised by carb and exercise intolerance, one sub-group of which is characterised by weakness rather than the muscle cramps that seem to feature in all the others). I've been limiting my carbs for years in order to manage my fatigue. I've been having a diabetes check every year - always normal in spite of becoming extremely fatigued following big carb meals. I had a glucose tolerance test years ago, and the result was normal, but in the hours afterwards I became increasingly debilitated - I was at my sickest the next day, and it took many days to recover. And, when the feeling came back into my feet on the day of the test, some of my toes ached, and continued to ache for days afterwards. Anyway, I refused to have another glucose tolerance test, so my annual diabetes check has usually comprised fasting blood sugar and insulin levels. Because all of my tests were normal, I thought that nothing measurable was happening in response to my carb intake. I guess I also didn't pursue the carb thing, because it wasn't the aspect of my illness I was most concerned about - my main concern was that persistent exercise correlated with increasing fatigue and, eventually, (when I wouldn't give up exercise) I started to collapse afterwards (the collapse of my blood pressure - dysautonomia). For years doctors mostly stared at me blankly when I raised the issue - eventually I sat in front of a neurologist and then a cardiologist for whom post-exercise collapse meant dysautonomia, and this was what I was diagnosed with. I thought I'd found the explanation for my illness I'd been looking for over decades. However, other people in my family also have abnormal fatigue, and one of my cousins was found in her mid-20's to have increasing debilitation with persistent exercise - she was told to stop exercising, and she's gone on to have a reasonably normal life. No-one else in my family, even this cousin, would get a diagnosis of dysautonomia. I joined the forum mid-2010, and I noticed that other people with dysautonomia had problems with carbs - mostly low blood sugar, and some people had been diagnosed with reactive hypoglycaemia. At the time I was panicked over two teenagers in my family who seemed to be showing signs of my illness, and I had given advice for both of them to lower their carb intake. My doctor and I agreed to a week-long carb challenge to check my carb response, with a glucometer provided by the practice and support from the practice nurse. I honestly thought that I'd be found to have reactive hypoglycaemia, and the young ones in my family could be screened for it, and supported to manage it. BUT I checked my blood sugar hourly each day from waking, and it didn't swing either high or low, even when I felt quite debilitated in the hours after a high carb meal. Unexpectedly, each morning I woke with blood sugar that was higher than the day before. On the morning of day four, I woke with blood sugar in the diabetic range (7.6). My doctor stopped the challenge, and referred me to the specialist for advice. SO, I'm waiting for my appointment with the metabolic geneticist. I'll post the results if I'm diagnosed with a metabolic condition that is likely to have caused the dysautonomia - it might be helpful to others on the forum. Also, during my consultation with the specialist before Christmas, I was asked questions such as 'do you get muscle weakness that makes it difficult for you to push yourself up out of a chair' - the answer was 'no' for me, but I know that others on the forum have this problem. Screening for rare metabolic disorders might well be useful for others with dysautonomia. With best wishes Dianne

Jonathan - are you ok? Dianne

CoCo Most importantly, I guess, I'm aware of the things that aggravate my illness (including exercise, physical exertion, flying, high carb meals, lack of rest, over-work) - I avoid them where possible. My illness is also aggravated by any kind of infection, and my recovery is very slow afterwards. The things that soothe my illness are sleep, rest (particularly laying flat), relaxation, a healthy, low-carb diet and regular fluids (I don't water-load, but I schedule fluids because I have no thirst). My body doesn't seem to warm or cool itself properly these days, so I take active measures to deal with changes in temperature. I also have scheduled bedrest twice every year (January and July) - so that I can rest through the hottest of summer and the coldest of winter. I'm on my summer break right now. If I tend to all of these things, most of my symptoms sleep. If I don't tend to them, I become symptomatic quickly. If I really aggravate my illness, I become anaemic - bedrest is the only thing I've found that fixes my anaemia (it has never resolved with iron supplements, so I rarely take them). I wear compression stockings most days (not the days I'm able to rest a lot) - if I'm on my feet without them for too long, I get very fatigued. I've also found that I'm much more functional if I actively treat symptoms. For nausea, I take ginger and peppermint. For my neck pain and soreness at the back of my head, I have gentle physical therapy (I use cranial osteopathy and neurological physiotherapy) - this also stops the numbness and tingling I sometimes get in my hands/arms when I'm sleeping. I see my physical therapists every 2-3 months at present. Laying flat generally eases my respiratory symptoms (sometimes it feels as though I'm trying to suck oxygen out of a really thick fog; other times I've woken at night gasping for breath as though my body has forgotten to breathe). The Lexapro also eased my respiratory symptoms, and I would take it again as a short-term measure, if it was necessary. The other medicines I have found to be effective in the short-term, are infant ibuprofen (which stopped my night-sweats) and Lexotan (for anxiety and panic attacks) - although, the better I manage my illness, the more likely all these symptoms are to sleep. I understand that the people most able to manage their dysautonomia successfully are those who have sourced it to an underlying illness. I saw a metabolic specialist before Christmas and she suspects I have a genetic condition causing a dysfunction of my carbohydrate metabolism - hence my problems with exercise and carb intake that can be tracked to way before I was diagnosed with dysautonomia. For other people with dysautonomia, exercise is necessary to maintain functioning - it just makes me very, very sick. Good luck with finding the management approaches that work best for you. With best wishes Dianne

Hi. My doctor trialled me on Pristiq during my last exacerbation. My bladder was failing and my night-time respiratory symptoms had recurred, and she was trying to dampen down my autonomic nervous system in the hope that the symptoms would settle. I tried Lexapro first (an SSRI) but the side-effects were too severe, including chronic insomnia. It was then that I was prescribed the Pristiq, which my doctor thought might settle my symptoms without keeping me awake. I took a half dose, then a quarter dose the next day because I was feeling quite zombie-like. I didn't take another dose, because I got in my car and realised that I didn't know how to drive it - my cognitive functioning had gone into a rapid decline, and I didn't really recover for many weeks. I know that there are people who persist with a new medication for weeks, even if they're doing very poorly on it, so they can be sure of whether or not there will be any benefit, but I also work full-time - if I can't think, I can't work. Working is an endurance test, even at the best of times - I generally don't take or do anything that makes it harder for me to keep earning a living. Its important to note that there is a wide variation in responses to medication among the people participating on the forum. You might do really well on Pristig. I'm glad I tried it, but I'm equally glad that I stopped it as soon as I knew it had disagreed with me. To date, I haven't found a medication that helps without also inflicting significant harm. I've had my best results from non-medication approaches. Good luck and best wishes Dianne

Nowwhat - I hope you follow your instincts on the issue of surgery. It doesn't matter how long the surgeon's CV is, if your gut is telling you to not proceed. I would also be interested in evidence relating to outcomes from this surgery (including the impact on patients' overall functioning) - is there any published evidence? Like a lot of others on the forum, I have problems with neck soreness - but not nearly to the extent that you do - and for me its effectively addressed using gentle physical therapy. When my dysautonomia symptoms are at the most severe, I actually feel at my best the day after a neurological physio session, so I'm convinced that my neck issues are impacting on my overall illness. Good luck and best wishes Dianne

Robin, Julie and everyone else - a thousand Christmas blessings. I like the sound of 'hope and deliverance' - bring it on, for all of us. Dianne