dianne.fraser

Sue

I took my blood sugar hourly from waking during my three-day carb challenge, and it remained stable - no sign of high or low blood sugar in response to food (including high carb and high GI food). I went 'downhill' in response to big carb meals and my GTT in that I felt progressively more fatigued, generally unwell and struggling to stay awake.

I didn't have any endocrine testing in the 24 hours after my GTT, so it isn't clear what was happening, but I had a very similar response to a delicious bowl of spaghetti during the carb challenge.

I had expected that my rapidly increasing fatigue after carbs would correspond to some kind of change in my blood sugar, but it didn't. My fasting insulin levels have also tested normal over the past five years - its not hyper-insulinaemia or pre-diabetes.

I had actually hoped that the carb challenge would show reactive hypoglycaemia, because this is something that others in my family could be screened for, and something that even teenagers can learn to manage.... I'm hoping that the metabolic specialist will be able to shed some light on it.

Dianne

I've only searched for metabolic disorders characterised by exercise AND carb intolerance (my main problems, and problems I can trace back to way before I was diagnosed with dysautonomia). I haven't done an exhaustive search - I only wanted to know that a visit to a metabolic specialist was justified. Glycogen storage disorder Type 7 (PFKM) is a pretty good fit, though it is so rare its very unlikely. Type 5 is characterised just by exercise intolerance, and it might be a better fit for my cousin. Apparently it can also be characterised by excessive muscle development and muscle cramps (more like my father).

I also have a strong family history of diabetes - poorly controlled diabetes can result in dysautonomia. I'm not diabetic or pre-diabetic, but I've been restricting my carbs over many years in order to manage my fatigue. In a recent carb challenge (I was being checked for reactive hypoglycaemia), I didn't have the big fluctuations in my blood sugar that are associated with diabetes, but I woke each morning with blood sugar that was higher than the day before. On the morning of day 4, my doctor stopped the challenge when I woke with blood sugar that was not a disaster, but too high (7.6 or 140). This reaction was consistent with my last glucose tolerance test - the results were normal, but I went downhill for many hours after the test, and I was very sick for days afterwards.

At the very least, there is some kind of metabolic problem with my carbs that needs consideration. Perhaps my carb and exercise intolerance are linked; perhaps not. Its at least worth a look, particularly as there seems to be a new generation of teenagers in my family with similar symptoms. They might be ok - just a phase they're going through that they'll grow out of - but if there is any chance that there is something they could be screened for, THAT would be preferable to waiting to see whether their function deteriorates.

With best wishes

Dianne

Maggie

Our triggers vary, but there is a cross-section of us with illness that is aggravated by exertion (including me). I feel fine DURING any kind of exertion; its afterwards that I'm in trouble - I get more severe symptoms following exertion; progressively more severe symptoms with persistent exertion. I'm not able to manage my illness at all without a lot of rest, and without avoiding physical exertion where I can.

I was always fatigued, but didn't start collapsing after exercise until my mid-30's, when I had a big exacerbation of my illness and an extreme worsening of my symptoms that I never really recovered from. At the time, I thought I had developed a new illness, but later I was able to track my fatigue back through the decades, linking a worsening of my fatigue to persistent exercise at various times through my life back to when I was a teenager.

Apparently one of my cousins had the same problem, but she worked it out in her mid-20's - her doctor couldn't work out why a healthy young woman would have increasing debilitation with persistent exercise, so he (surprisingly) told her to stop. She did. Go figure. BUT, her illness did not progress as mine did, and she's had a reasonably normal life. If I could go back to my teenaged years and stop all exercise then, I'd do it. Instantly.

There are metabolic diseases that are characterised by exercise intolerance, and that are treated in part by the avoidance of physical activity. Some of these conditions cause physiological damage if left unchecked, including damage that presents as dysautonomia. I'm scheduled to see a metabolic specialist in December, and I'm hoping that she'll consider whether my illness might be underpinned by one of those conditions.

Your ablation might have caused your illness, or it may have aggravated an existing illness - I guess if you had never lived with fatigue before the ablation, and your response to exercise had been normal previously, you have good reason to suspect the procedure as a root cause.

Just in case its relevant to you, I'll let you know how I go in December with the metabolic specialist.

With best wishes

Dianne

I get cramps in my legs and feet at night - they resolve really quickly when I drink a glass of water.

Dianne

My doctor trialled me with Pristiq last year. I only took two doses - it was like having a chemical lobotomy. I sat in my car, unable to work out how to drive it.... It took months to recover. I'd proceed with caution.

With best wishes

Dianne

Lieze

Nope, I don't think its just stress, not if you have dysautonomia.

I was convinced for years that my unexplainable physical symptoms had to have a psychological cause. I did a whole lot of body-mind techniques and I saw a psychologist, but nothing eased my symptoms until they were addressed on a physical level. Now that my symptoms are better controlled, I feel better both physically and emotionally.

Remember, it is incredibly draining emotionally to be sick, particularly when you're trying to function as a well person would.

My autonomic nervous system isn't worth a bag of beans. In retrospect, it was never going to help to re-hash my childhood or visualise myself glowing with good health while saying over and over 'I am in glowing good health'.....

With best wishes

Dianne

Rach

I'm so glad that the ibuprofen helped your night sweats! Its something I recommend every chance I get.

I'd had night sweats for almost 20 years when, in my late 30's, I started seeing an immunologist about my undiagnosable, mystery illness. At one consultation I was beyond exhausted, and I told him I hadn't slept properly in weeks. I still remember him turning to me with a look of incredible kindness and saying 'would you like me to give you something to help you sleep?' to which I snapped 'NO. I want you to stop my heart from racing at bedtime - it's keeping me awake. AND I want you to stop my night sweats - they wake me at 2am and I don't get back to sleep afterwards.'

I immediately regretted snapping at him, and I felt as though I had asked for the impossible, but he took action right away to stop my heart from racing at bedtime (he stopped my evening steroids) and to stop my night sweats (with a small dose of infant ibuprofen). I started sleeping better and I felt much better physically and emotionally, because I was more rested and I wasn't overheating. Overheating is actually really, really bad for your health. The outcome was that, although I still didn't know the name of my illness, it was better managed overall.

I had been referred to him because of my mystery illness, which was characterised by a range of odd symptoms, including an odd anaemia that only resolved with bedrest, and that was aggravated by iron supplements. He saw this anaemia a lot in people with autoimmune inflammatory disease - he said that it was just an indication that inflammation was present (and, in fact, this type of anaemia is common in people with any kind of chronic disease that is is out of control). Even if he couldn't source it, it could be eased by anti-inflammatories. Therefore, I guess he saw my nightsweats as yet another sign of inflammation.

I was only able to take one type of ibuprofen (infant ibuprofen) - I tried another type, but it made me feel quite unwell. My immunologist also recommended that I take zantac with the ibuprofen to avoid gut problems.

Periodically I would stop the ibuprofen to check whether I still needed it. I took it up again for a short while recently, but basically my night sweats stopped a couple of years ago. I think my sweats stopped because I was managing my illness better overall and, maybe, because my sweating overall was slowing down.

I support the inflammation theory of night sweats - every disease must have an inflammatory component and sweating is one of the body's key cooling mechanisms. Ideally, we treat the underlying disease to reduce inflammation, but sometimes we can't identify the underlying disease, and sometimes our treatment options are poor or unknown.

Good luck and best wishes

Dianne

Hi - I'm reporting back as promised on my Lexapro trial. I discontinued it today. Combined with Zantac it no longer gave me stomach soreness, but it made me hyper-alert. I've not slept for almost two days, and I'm feeling very jittery. I'm glad I tried it again, but even a miniscule amount caused adverse effects for me. Just another to add to the list of medicines I don't tolerate. I am filled with wonder that anyone is able to take a daily dose of any drug at all.....

Dianne

Caterpilly

I'm so, so sorry that life continues to be so hard for you.

Even a mild infection can aggravate dysautonomia, leading to a loss of function and a very long recovery. I can't imagine what impact cancer would have - I would think that the loss of function would be amplified, and the recovery long but not impossible.

Last year I continued to go downhill after a succession of infections. I was honestly doing everything I could to stop the downward spiral, but my body just didn't respond. In the end, I walked out of my office (not even stopping to turn off my computer), I went home and didn't go back to work for 5 weeks. I cried in bed for the first 24 hours, then I went to my bookshelf and took back to bed all of my books on health and healing (I've got quite a few...) and spent hours looking for clues as to how to help myself. In the end, I re-read Deepak Chopra's old book on Ayurveda - the idea was to bring the body back into balance using an appropriate diet and health habits.

I decided that this was the approach I'd take. I didn't do too much that was different, I just kept going with a diet and with health habits that were soothing to my illness. It was like trying to turn around the Titanic, but my decline slowed, and then slowly reversed. My bladder had started to fail - I had become incontinent and my bladder was over-active - it slowly resolved itself (after about 12 months); my night-time respiratory symptoms also resolved. In the end, I was left once again just with basic dysautonomia symptoms such as fatigue and nausea. I saw my physical therapists weekly, then every second week, then every month, now every two months.

Two years after my last big exacerbation, I've recovered a lot of the functioning I lost. I think you are entitled to despair every so often, but I want you to know that recovery of functioning is very possible, even when it seems to be implausible.

Re your problems with weight-bearing as a child - apparently children with rheumatic heart disease often present with odd rheumatic symptoms and a reluctance to bear weight on affected feet/legs or whatever. Failure to treat RHD results in damage to the heart. I'm not suggesting that you have RHD, but it does sound as though there are some similarities, just with a neurological impact.

I'm not very prayer-ful these days, but I'll say a heart-felt prayer for you tonight.

With best wishes

Dianne

I also get these symptoms, but usually only when something has aggravated my illness (eg exercise or lack of rest) or during full-blown exacerbations of my illness. So far, I've always been able to ease these symptoms by using the usual approaches - rest, laying flat, fluids and salt. My neck soreness has been stopped by regular treatments by my neurological physiotherapist and cranial osteopath - I see my therapists only for preventative care now.

My chest discomfort and breathing problems have also been relieved by Lexapro, although I don't tolerate it well or for long.

With best wishes

Dianne

Hi. Lexapro eased my night-time respiratory symptoms and chest discomfort during an exacerbation of my illness last year, but it was accompanied by chronic insomnia, tinnitis and stomach soreness - I lasted 6 weeks on it.

I recently tried it again, this time to see if it might help my cognitive functioning which always takes a knock after a bit of a crisis - I'd been feeling pretty good overall, but I'd been sitting in front of my computer at work staring at the screen, unable to make sense of any of my work, and unable to write a briefing (I work in health policy - I'm supposed to spend my days writing briefings).

This time I began with 1/4 tablet (2.5mg) every second morning. I had a fantastic result really quickly - my head cleared, I felt alert, I was productive at work, heck, I could write a briefing - but I only lasted a week before I was floored by the stomach soreness again. I'm taking a break until my stomach heals up (yep, I also feel as though a hole has been punched in my innards), then I'll try again with the same dose but accompanied by a zantac to see whether that might stop the stomach soreness.

I'll let you know how it goes.

With best wishes

Dianne

Issie

Iron exacerbates inflammation. I understand that blood-letting, in removing iron, has been found to reduce inflammation. This might also make people feel better.

Dianne

Congratulations Simmy. I'm so glad that you now have the opportunity to focus on your health without the strain of struggling to get government support. A thousand blessings.

Dianne

I tried a couple of different beta blockers - I did well on them only for a few weeks, then they seemed to amplify the effects of my illness. If I was on my feet for too long, my fatigue would be unmanagable; if I flew inter-state, there was no guarantee I'd be able to get out of bed the next day. I'm one of those people who doesn't tolerate medications well in general - a cross-section of people with dysautonomia probably do well on them.

Dianne

Corn and maize starch cause GI symptoms for me, including stomach pain, bloating and nausea. These symptoms are always accompanied by increased fatigue and, in my younger days, I would also have outbreaks of acne which took a long time to heal. Earlier this year I also developed fairly severe nausea when I started eating quinoa for breakfast. Finally, of course, I get much more fatigued if I eat high-carb foods such as bread, pasta and rice.

I'm not sure how effectively I could manage my illness without eliminating these foods.

Dianne

Sue

I was found to have massive inflammation in my stomach when I had a gastroscopy around 7 years ago, but no helicobacter. My inflammation was tracked to a corn/maize starch allergy - I develop shocking stomach pain and bloating if I eat food that is thickened with maize starch or take medications/vitamins with a maize starch filler. The pain is less if I eat other corn products, but the bloating tends to be worse eg I've started eating sugar-free chocolate and I had a reaction to one brand that uses maltitol, a product derived from corn.

Dianne

Nowwhat

I understand that endocrinologists investigate genetic metabolic issues, but its a sub-speciality - not every endocrinologist would be able to do it. The endocrinologist I've been referred to works at an adult metabolic diseases service that investigates and provides care for patients with all sorts of weird inherited disorders relating to metabolism.

Your family doctor will be able to check your fasting insulin levels as well as your blood sugar (either fasting blood sugar or glucose tolerance test) and refer you on if it looks as though something odd is happening.

Re exercise intolerance - I always felt fabulous when I exercised, so it wasn't clear that I was exercise intolerant until I started collapsing afterwards (my blood pressure was collapsing). I would rush home after the gym or after a walk around the lake and sit in my loungeroom waiting for the collapse, then I would sleep for hours and be much more fatigued for days afterwards.... I gave up exercise when I was 40 - it was making me too sick to continue. It turns out that one of my cousins worked it out when she was in her mid-20's - increasing fatigue with persistent exercise. Her doctor told her to stop - she did - and she's led a basically normal life ever since. Her illness didn't progress. I think I did physiological (or neurological) harm by continuing to exercise.

I think its important to remember that there are big differences as well as big similarities between us all - a thorough assessment is really important in order to understand our individual illnesses. This is what I'm hoping to get from the metabolic specialist - a good assessment to clarify what I'm dealing with and what my treatment options are.

Dianne

Dizzy

I'm sorry I missed your question yesterday about where to find a neurological physiotherapist! Call your national or state-based physiotherapy association - they'll be able to tell you of any physios in your area with specialist training in this area.

With best wishes

Dianne

Reen - your national or state-based Physiotherapy Association should be able to give you a list of physiotherapists in your area who have specialised training to treat people with neurological conditions. Whatever approach you take, I really hope you find some relief soon.

Issie - I was gluten-free/wheat-free for many years, but I remained very fatigued. Eventually my doctor decided that I was allergic to every grain except for rice. It was by restricting my diet fairly extremely at that point that it became apparent that my fatigue was persisting, and seemed to follow my rice intake. Excluding rice dramatically reduced my fatigue levels and, unexpectedly, resulted in the clearing up of the acne that had affected me (sometimes very badly) throughout my adult life.

At first I thought I was allergic to every grain in the world, and that I was the first ever person to be allergic to rice..... I know, it sounds dumb now. A couple of years later I worked with a woman with pre-diabetes and I queried whether my problem was really with carbohydrates. Thats when I started my annual blood sugar and insulin testing.

It is interesting to hear about your family connection. I've been worried about one of my nephews, who has seemed to have abnormal fatigue in the past and who, at 19, this year developed a really bad case of acne that wouldn't heal. I found myself telling him to stop the carbs - no bread, no rice, no pasta. It worked for him, but he hasn't stuck with it. He's young. It was because of this that I decided that I really needed to source the carb problem - if I have dysautonomia because of harm caused by some kind of genetic metabolic problem, then maybe there could be screening for my family so that any young ones who are affected can lead better lives and have a better health outcome.

In answer to your question about hyper-pots - I don't have pots, but I agree with you. I think that there is definitely an adrenal issue going on for me - I get panic attacks (not so often now that I manage my illness better) and I had a bad reaction to Pristiq last year. Something else that I'm hoping the metabolic specialist will be able to consider.

Dianne

Dizzy

Sorry to hear that your neck is giving you grief. I see both a cranial osteopath and a neurological physiotherapist - I find that the physio treatment is more effective at relieving my neck soreness and the soreness I get at the back of my head, but I think my osteopath adds something as well. They come at it from different angles - my physio works only with the muscles; my osteo only does gentle manipulation. For me, I need them both to get a complete therapy. I find that, untreated, my neck soreness seems to correlate with worsening dysautonomia symptoms.

Re your medication - my general approach when my dysautonomia is worsening, and I'm not sure why, is to stop anything new that I might be doing or taking. It might be worth talking to your doctor about whether to take a break from your new medication to see whether your neck symptoms improve.

Let us know how you go.

Dianne

Hi. Sorry to hear that things are so confusing and frustrating. My blood sugar was recently found to be weird too.

I've been limiting my carbohydrate intake for years (it helps limit my fatigue). It doesn't help me to eat low GI carbs - to limit my fatigue, I need to keep my total intake of carbs low at each meal or snack.

BUT I've had my fasting blood sugar and insulin levels tested at least annually for the past five or six years and its always been normal. I refused to have another glucose tolerance test when the result of my last one was normal but I was very sick the afternoon and evening of the test; at my sickest the next day; much more fatigued for many days afterwards; and left with really badly aching toes for more than a week.

Recently, after reading on the Forum that other people have been diagnosed with reactive hypoglycemia, I asked my doctor if we could check whether that was a problem for me. I was given a glucometer (and training and support from the practice nurse) and told to challenge myself with carbohydrates for a week, take regular blood sugar readings, and report back. I lasted for three days. I basically ate my normal diet, but ate three high-carb meals over the three days and one high-carb snack. I took my blood sugar every hour after waking.

Basically, I didn't respond to the high-carb foods as a diabetic would, but my fatigue levels increased dramatically. On day three, I was extremely fatigued after eating spaghetti for lunch, but my blood sugar was fine - it didn't reflect how I felt. I was struggling to stay awake at 7pm that night, and I was asleep by 7.30 but, once again, my blood sugar seemed to be normal. What was abnormal, was that each morning I woke with higher blood sugar than the day before. On day 4, my blood sugar on waking was 7.8 (think this is around 140 in the US) - my doctor decided I had to stop. She's now referred me to a metabolic specialist - someone who specialises in genetic metabolic diseases. My appointment is scheduled for 20 December.

The query is whether I have a fault in my carbohydrate metabolism that might have caused neurological damage over many years, resulting in the dysautonomia. I'm hoping that this doctor might also be able to consider whether there is a link to my exercise intolerance (there is a series of carbohydrate metabolic disorders characterised by exercise intolerance, some of which, unchecked, I understand can result in physiological damage).

It might be another dead end, but I figure its worth checking. It would actually be good to hear from others on the Forum who have carb and exercise intolerance, or just weird blood sugar, who have been checked for these conditions.

Dianne

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