dianne.fraser

Great to meet both of you!

Blue - I've pm'd you: let me know if you'd like to catch up.

Sunburnt Land - let me know if you're ever down this way and want to get together.

Dianne

Blue

Sorry - I've been out of town for a couple of days and almost missed your post. I'm from Canberra. Like you, I don't know any other people with dysautonomia. Yep, it is isolating....

With best wishes

Dianne

Melanie

I'm glad you brought this up! I have respiratory symptoms at night when my illness is at its most active or severe. During a really bad exacerbation of my illness I woke at night gasping for breath as though my body had forgotten to breathe. At the time, I was too sick to get out of bed, and I just lay there expecting to suffocate in my sleep. It resolved after about a week of bedrest.

My doctor stared at me blankly when I talked to her about it, then she organised for me to be tested for asthma.... Nope, I didn't have asthma. To be fair to her, my dysautonomia was undiagnosed at the time and this was just one more symptom that made no sense at all.

Last year my night-time respiratory symptoms returned and were a little bit different. I was waking during the night feeling as though the muscles at the back of my throat had collapsed, blocking off my airway; also, as I was drifting off to sleep, quite a few times I became aware that I wasn't breathing. It really freaked me out.

I changed doctors during this period, and my new GP ordered a sleep study which showed that, at the time, I was having little hypopnoeas - nothing to worry about. My new doctor trialled me on Lexapro, and I found it really eased my respiratory symptoms. The morning after my first dose, I felt as though my breathing was easier all round, and I'd had no respiratory symptoms at all during the night. Of course, after about a week on Lexapro I'd developed insomnia (a common side effect) - I stayed on it for about 6 weeks, but stopped it because I found it too hard to keep working while I wasn't sleeping. I guess the Lexipro not only reduced my respiratory symptoms, but it also gave me confidence that I wouldn't suffocate in my sleep, and this got me through the rough patch I was having.

Re waking at night with your heart pounding and feeling as though something horrible has happened - it sounds as though you've been having night terrors. I got those when I started doing a lot of exercise after not doing much exercise for a while. I would actually wake with my heart racing, and leap out of bed, panicked - it felt as though there was an intruder in my room.... One of my nephews (he has a similar symptom profile to me) also had them when he was about 11 years old and he was doing a lot of exercise at a tennis camp.

To doctors who don't have much exposure to dysautonomia I can understand that these symptoms might sound improbable, but they're all perfectly logical when viewed within the context of autonomic dysfunction.

With best wishes

Dianne

Thanks Crow. I agree with Todd - its encouraging that there is any press at all.

Here in Australia there are periodic updates on the health of our only famous dysautonomia sufferer, Greg Page (formerly the yellow Wiggle) - not someone with POTS, but some general type of autonomic dysfunction. It all helps to raise awareness among health professionals and in the broader community.

Dianne

Lieze

I'm so sorry - what a horrible day. If I were a neighbour, right now I'd be making you a cuppa, handing you tissues and telling you to cry all you want.

I started off life as a nurse - I know that this can be a really tough job physically and, although nursing is a caring profession, it doesn't always care for its own.

You have so much going on in your life right now that the last thing you need is to be ridiculed by people you would expect might show you some compassion and understanding. What can I say - I think we're all doing the best we can (even your workmates), but sometimes our version of 'the best' is less than ideal.

I can understand that the heart rate monitor provides you with concrete information that helps you to contextualise how you're feeling, and to respond appropriately to your illness as your symptoms fluctuate. If that is what you need right now, and if it helps you get through the day, good-o.

You are firmly in my thoughts right now - I really do hope that you have people around you to provide real care and support.

With best wishes

Dianne

Sue

It might be a blood condition called porphyria, which is characterised by blue urine. As mentioned by Sunburnt Land, it was featured on a recent episode of Doc Martin (and English TV program that broadcasts here in Australia). It was also central to a movie (I think from the 1990's) called The Madness of King George.

On the other hand, it might just have been something you ate... Something to take up with your doctor.

Let us know how you go!

With best wishes

Dianne

Hi. My mother and grandmother both have rheumatoid arthritis, so I wasn't really surprised 5 years ago when I started waking in the mornings with really stiff, painful hands. Because of my family history, I assumed it was RA and my doctor at the time noted that the swelling and inflammation were bilateral - consistent with RA. I didn't see a rheumatologist (no-one in my family does - RA is kind of normal for us). I figured that, if it became a problem, I'd just go onto glucosamine chondroitin, which my mother uses to stop the pain. The symptoms have flared up only occasionally since.

Before Christmas last year when I saw my doctor I noted that I was having a flare-up of RA in the joint of one thumb - my doctor didn't think it could be RA because it was only on one side. I thought, well, what else could it be - it was very swollen, it was red, it was painful and I'd lost function. I guess it might not have been RA afterall, and it might never have been.

I actually tried to take glucosamine chondroitin as planned last year, but developed severe pain in the area of my spleen/left kidney - I don't know if this has happened to anyone else.

A word on lupus. Before I was diagnosed with dysautonomia, a lovely immunologist tried treating me for lupus (on the off chance that this was my undiagnosable mystery illness) - the chloroquin brought on a big exacerbation of my illness.

It could be that everyone else in the world tolerates these substances, but if you're trying them, tread carefully.

With best wishes

Dianne

Blue

Re your migraines - have you seen a pain specialist? I know that Professor Michael Cousins, a Sydney-based pain specialist, has worked miracles for some migraine sufferers using an implantable device of some sort. I understand that it worked for Kieran Perkins' wife, Symantha - Kieran spoke about his family's experience at a pain summit held in Canberra earlier this year. I think it takes a long time to get in to see Professor Cousins, but I understand that, for the people who do, it can be life-changing.

With best wishes

Dianne

Janey

These days I just accept that my gut doesn't work properly - like Blue, I'm always constipated..... Its one of my constant symptoms, along with fatigue. Most of my other symptoms sleep, or are sporadic, until something aggravates my illness, or I have a full-blown exacerbation.

The thing that seems to most aggravate my gut is maize starch, which I'm allergic to - it gives me stomach pain (which shows up at gastroscopy as inflammation), nausea and bloating (9-months-pregnant-type bloating - ughhh). Iron tablets also aggravate my gut - I no longer take them. I'm also much more constipated in the few days before a period.

The things that ease my illness generally, are the things that seem to most ease my gut eg rest, laying flat and plenty of fluids.

Like Rachel, I use ginger to ease my nausea.

Re the neck soreness - I see an osteopath and a neurological physiotherapist every 4-6 weeks to treat and prevent this symptom, along with the soreness I get at the back of my head. I've found my illness is better controlled overall as long as I have these symptoms under control.

With best wishes

Dianne

Kits

Holy cow! I thought I was the only sick person in the world who had been accused of being gay - I lay in bed with my mystery illness (instead of Brad Pitt) while all of my friends lived full lives and got married. My sister and sister-in-law decided that if I REALLY liked men I would have gone out and got myself one.

To be honest, I thought I'd be dead by now and it wouldn't matter.

The other good'n was also from my sister-in-law - she excitedly called me last year to tell me that she knew what was wrong with me: I was just going through menopause. She couldn't accept that I had been ill for the previous 25 years, but menopause was an acceptable explanation for the symptoms I was having at this time. Nope, I'm not menopausal...

Ah well.

Dianne

Hi. I had an abdominal ultrasound before Christmas last year because I was having pain in the area of my spleen/left kidney. I guess the scan will reassure your doctor that there is nothing untoward happening with your internal organs and it will show the pooling of blood, if there is any.

Follow your instincts with this doctor - I'm all for trying new approaches but, ultimately, you will bear the consequences if his approach aggravates your illness.

Good luck and best wishes

Dianne

Tracey

I don't have POTS, so I don't know how relevant my experience will be for you....

I'm ok when I'm in the air, but something goes awry on landing - I have a massive increase in my fatigue and nausea levels; my speech doesn't work properly and I'm even more likely to have a panic attack. I now have an agreement at work that I don't fly inter-State for meetings (I'm useless at these meetings anyway these days). I've never been carted off to hospital after flying. At worst, I've sat slumped in the airport with my head on my knees, heaving. There are people who feel they can't live without dignity, but I seem to do ok.

The last time I flew it was for an inter-State holiday - I was really unwell, but I think I might have been better if I'd allowed 24 hours to lay flat after getting off the plane.

Good luck - I hope you take your holiday, and that it is fabulous.

With best wishes

Dianne

Mirry

Did your monitor also capture changes in blood pressure?

My heart rate stays perfectly stable as my blood pressure collapses - you might be having a similar experience. I think my cardiologist only knew about POTS and cardioneurogenic syncopy - it clearly wasn't POTS, so she diagnosed me with the other one. There are many types of dysautonomia - just knowing that you sit somewhere on the spectrum will provide you with lots of basic management tools that seem to be standard (eg increased fluids and salt, and compression stockings).

Good luck and best wishes

Dianne

You should cry all you want - you're among friends. You can schedule heroics for another day.

You've been coping with your identified medical condition over a long period of time, and helping your son to cope with his - to have something else appear must feel as though it is all too much.

I know how distressing and isolating it is to live with debilitating symptoms and to not know the cause - I'm really glad to hear that you're undergoing investigations that will help you and your doctors to get to the bottom of it.

Please let us know how you go with your upcoming tilt-test.

With best wishes

Dianne

A break from your illness - how absolutely lovely. Enjoy every second - I'm so happy for you. I'm going to go out today and buy a whole lot of milk!

Re the naturopath - I spent tens of thousands of dollars over decades in a search for help for my mystery illness. I tried every type of alternative therapy and took every suspicious-looking substance. Nothing helped me, and no-one gave my money back when their treatments failed.

Dianne

Sue

I do poorly on carbohydrates - I'm much, much more fatigued on bread, pasta or rice. If I really need to stay awake in the afternoon, I avoid eating any of these things at lunchtime. I've been checked for diabetes at least annually for years, and I've also been tested for pre-diabetes - all results have been normal. I no longer agree to glucose tolerance tests - 3-4 hours after my last one, my feet seemed to freeze and, when they thawed and I got feeling back, some of my toes ached for days. I was also much more fatigued for days afterwards.

I had never heard of reactive hypoglycaemia before I found this Forum - next time I see my doctor I'll talk to her about whether that might be my problem.

With best wishes

Dianne

Mary

The first dysautonomia story I ever read was a published case report by Spanish economics professor Michael Rocinante (Clin Auton Res (2008) 18:48-51) - he found that elevating the head of his bed to 45 degrees improved his orthostatic hypotension and stopped him from having to get up so often through the night to go to the bathroom. He wrote that he tried various angles, but anything less than 45 degrees didn't work as well. He also wrote that sleeping this way took months to get used to and, after a year, was still not comfortable, but it was bearable.

I haven't tried this approach personally - my bed isn't really built for it, and laying flat is really soothing to my illness.

With best wishes

Dianne

Oh Lieze, I'm so sorry.

Dianne

Your life sounds totally overwhelming right now - I'm so sorry.

I have night-time respiratory symptoms during exacerbations of my illness. During my first big exacerbation, I would wake at night, gasping for breath. It felt as though my body was forgetting to breathe, and I was certain that I would suffocate. Other times, I've woken feeling as though the muscles at the back of my throat have collapsed, blocking my airway. During my only sleep study, I had a couple of harmless hypopnoeas - nothing to worry about. I guess that, when our symptoms vary from week to week and sometimes disappear altogether, it can be hard to capture what is happening during the worst times. When I'm managing my illness well, and there is nothing aggravating it, my respiratory symptoms sleep.

I developed bladder symptoms during my last exacerbation, including periodic incontinence and and urinary urgency. I didn't expect my bladder symptoms to resolve, but they did. It took about a year after my last exacerbation.

My respiratory and bladder symptoms are the symptoms most likely to leave me completely hysterical.... No heroics here.

I don't seem to tolerate medications - I've tried propranolol (among other medicines) and it seemed to amplify my symptoms. I feel relieved to hear of your experience - I think my doctors feel I'm just being difficult.

I have a long history of anaemia. It was during investigations for anaemia many years ago that I had a laparoscopy and I was found to have a number of small patches of endometriosis - these were fried out during the procedure. I wasn't told of any problems encountered during the prodedure, but I struggled to wake up afterwards. All the other patients in the day surgery unit had gone home, and the nurse was still shaking me and saying 'Dianne, you have to TRY to wake up'. I hope that you will arrange for someone to pick you up after the procedure and take care of you when you get home.

I'm sure you've read of the other stories of anaemia on the Forum. I become anaemic if anything at all aggravates my illness - usually overwork, lack of rest, infection, physical activity or medication that doesn't agree with me. My anaemia isn't related to blood loss or malabsorption, and it doesn't respond to increased iron intake unless I first rest and get my illness under control. I was once given 11 weekly iron injections - my doctor thought that my anaemia would resolve if he just kept adding more iron. This made me very, very sick and I've never regained the functioning I lost during that time. Because of this experience with Ferrum H, I have refused further iron injections and infusions when they've been offered.

I'm currently anaemic - my approach to it is to take leave from work, go onto bedrest for a least two weeks and do all of the things I need to do to contain my illness (rest, stay warm - it's mid-winter here in Australia - keep my fluids up and my salt intake, lay flat as much as possible, eat a nourishing diet). I take a liquid iron supplement as one part of this overall approach. I guess that because my anaemia is directly related to the state of my illness, rather than blood loss or malabsorption or insufficient intake, this approach has never failed to work for me.

I'm on day two of a month-long rest - I'll ask my doctor to check my iron levels before going back to work on 2 August.

Your doctors will have proposed an iron infusion because they believe your anaemia is due to blood loss or low intake - otherwise, they wouldn't expect the infusion to have any impact. They will understand that, with anaemia, you have to identify and treat the cause.

Let us know how you go with it.

Hang in there.

With best wishes

Dianne

Lieze

thank goodness you're there to reassure her. I hope she's also taking a look at this forum - there is a lot of good information here, probably covering all of the things she is most concerned about, including her concern about blood sugar.

I've met only one doctor who was familiar with dysautonomia - she was able to recognise it, but she wasn't familiar enough with it to give me basic information about management approaches. If doctors stare at her blankly when she tells them that her dysautonomia is worse since the virus, it is because of doctors' lack of familiarity with our illness, not because the connection doesn't exist. I'm not sure it is reasonable for us to expect doctors to have a good understanding of our illness - perhaps most of them will only see a couple of cases in their career. To me, this is why it is important to share our experiences - so that we all have a better idea of whats 'normal' for us.

If you feel its appropriate, please give her my regards.

With best wishes

Dianne

Lieze

I find it really interesting that her symptoms improved, but she lost weight, when she gave up wheat - I had a similar experience when I was put on a grain-free diet (before I was diagnosed with dysautonomia, my doctor attributed my symptoms to allergies). Although I felt better overall, I panicked at the weight-loss, and a dietitian had me eating every two hours to try to contain it. It tapered off in the end, and I put a bit of weight back on when I stopped exercising. A couple of years later I read about the low-carb Atkins diet - I figured that, although I wasn't eating all of the Atkins-recommended fat, the effect of simply being grain-free was similar for me.

Also, re her worsening symptoms after the virus.... I had a series of infections more than 18 months ago immediately following an exacerbation of my illness (I was over-working at the time - it always sends me into a downward spiral). Over a four-week period, I had a nausea and vomiting bug, then a chest infection, then laryngitis, then a tooth abscess, then sinusitis, then conjunctivitis, then three bouts of tonsilitis (phew). I always recovered from an exacerbation of my illness with a couple of weeks of bedrest but, what with all the infections, I failed to recover and I seemed to keep going downhill. I developed a really distressing new symptom, had a recurrence of symptoms that usually sleep, and (to be honest) became fairly hysterical - I honestly thought that I was going to keep getting sicker and then die. I didn't die, I just recovered very, very slowly. I didn't know at the time that infection can really give dysautonomia a knock, and that recovery afterwards sometimes takes a while. I could have used some reassurance - I'm really glad that you're there to provide it for your workmate.

With best wishes

Dianne

Kellz

I'm sorry that you're having such a terrible time.

I'm having scheduled leave this year in the hottest and coldest months - my body doesn't cope well with very hot or very cold weather, so I'm resting through the worst of it. Not sure whether this will be helpful to you.

Anna - I had a couple of decades of night sweats and and severe over-heating at night. In the end, a small dose of Ibuprofen at bedtime brought it under control. Not sure whether this might be helpful for your son.

With best wishes

Dianne

I had a weird eye thing quite a number of times - it was as though everything in my field of vision shivered for a few seconds, and I thought my eyes were wobbling. It happened in various contexts, including while I was driving. Witnesses said my eyes WEREN'T wobbling. I discussed it with my neurologist - I was actually having little seizures.

I agree with Lieze - this is something to discuss with your doctor.

With best wishes

Dianne

Toddm

I'm sorry to hear that you've had a similar experience to mine.

I've been living this way for the past five years. At first I kept working full-time because I expected to die - under my superannuation arrangements, if I die in full-time paid employment my super will be paid into my estate as though I lived to be 65. This sounded like a good deal for my family.... It might sound bizarre, but I was extremely ill without a diagnosis for many years (I seem to have had periodic exacerbations of my illness over 25 years), and I wasn't diagnosed until just under two years ago, aged 43. In the meantime, my breathing had seemed to falter at night a number of times, and I expected to eventually suffocate in my sleep. It didn't appear to be a long shot that I would die sooner rather than later - I thought I'd only be crawling on my hands and knees to work in the short term.

After five years, I'm not sure I'm going to be dying any time soon, and it is less and less of a triumph to keep going this way. Here in Australia, when I'm ready, I'll go through a partial invalidity process to give me a four-day week - if approved, the fifth day will will be funded 75%.

First, this year I wanted to try taking two months of rest (January and July) - I thought that if I could take two long breaks, and not work for more than five months at a time, I would be better off. Unfortunately, it hasn't worked as well as I'd hoped. I'll reassess towards the end of the year.

I too wish you delicious three-day weekends, with as much rest as you need, and the possibility that you also might have time to get up and live properly.

With best wishes

Lieze

I really do think you're ok - we're probably all experiencing panic attacks in similar and different ways. The important thing is that sharing our experience breaks the isolation of it.

This is my experience (in grisly detail).

For me, at the beginning of a panic attack my heart races - the onset is very rapid. During my first panic attack my heart rate was so high that I recall thinking that my heart was barely pumping - it was next to useless - I had a feeling of suffocation - I couldn't get any oxygen - my throat closed over and I was unable to speak - I was gasping for breath. My clearest recollection of my first panic attack is of standing in a crowded room with people staring at me with a mixture of curiosity and contempt. In particular, I remember the pale eyes of one man who was staring at me intently, but not moving to help me. When my heart rate slowed, I felt faint, light-headed and exhausted - as though I had run a marathon (I guess my heart HAD run a marathon). I was much sicker in the couple of days afterwards - much, much more fatigued. And, of course, crushed and humiliated.

I remember crying through most of the night afterwards, then getting up in the morning, putting on my lipstick and going back to work.

This pattern has been repeated many, many times - the racing heart, suffocation, inability to speak, gasping for breath, being viewed as a basket case (and feeling like one), crying all night and picking myself up in the morning and going back.

I haven't had a panic attack now for more than six months - not because I worked out how to stop them (I haven't - I've tried many techniques and approaches, but nothing stopped them or reduced their frequency or severity), but because I stopped resisting - I have an agreement at work that I will no longer be placed under the conditions that trigger my attacks. I'm also managing my dysautonomia better now - this has had a bigger impact than any of the techniques and approaches I tried over many years.

Lieze, I think we're all ok.