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dianne.fraser

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Everything posted by dianne.fraser

  1. 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
  2. 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
  3. 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
  4. 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.
  5. Sandyshell I can't imagine how overwhelming this time is for you - I hope that you are getting the care and support you need. Re your anaemia - there are different types of anaemia, not all of which are due to insufficient intake or blood loss. For example, the anaemia of chronic disease is usually linked to an underlying medical condition and is generally treated by addressing the underlying illness. It sounds as though you've got good doctors, and the medical support you need. I'll keep you in my thoughts and prayers. With best wishes
  6. Lieze Thank you for sharing your experience with panic attacks - I'm so sorry this is happening to you. I've been having panic attacks for the past ten years, always connected with my speech (which goes awry when my illness is very active) and always at work (where I'm supposed to appear business-like and competent). I've hyperventilated in meetings, in teleconferences and on the phone. In a business environment, even dealing with doctors and doctor-academics, it seems to be very confronting for people looking on - no-one really knows what to do, and everyone seems to think I'm a lunatic. Its been the most humbling part of my illness, although these days I tend to think that humility is not such a bad thing. I also think that, more than any other experience, my panic attacks have taught me endurance and broken me of the need for approval. I've tried really hard to stop them - meditation, hypnosis, self-hypnosis, desensitisation (I hyperventilated and cried delivering my first speech at Toastmasters - it seemed very bizarre that I still got a round of applause). I saw a psychologist who helped me work through a program (titled Overcoming Panic) and some of the medication I've tried was supposed to help (it didn't, and I didn't tolerate it). I also faced my fear - I didn't avoid situations that would make me panic (this mean't that I panicked regularly). None of these things either fixed or reduced my panic attacks. The only thing that has helped is overall management of my illness - as long as I'm managing my illness well, as long as most of my symptoms are sleeping and I'm well-rested, there is much less chance that I'll panic. I now have an agreement at work that I will focus on doing the things I can (critical analysis and writing, mostly). So I guess, for me, my panic attacks are firmly linked to my illness.
  7. I still work full-time (I've got a desk job), but I'm constantly physically debilitated - I'm fatigued every day, exhausted by Thursday, completely unproductive on Friday, bedridden on Saturday and, on Sunday, I get up to do basic chores (grocery shopping, washing, basic cleaning). I feel as though I'm resting through every weekend so that I'm able to drag myself through another working week. So far I haven't been able to find a level of physical activity that I tolerate - even gentle yoga aggravated my illness; light weights and stretching with theraband both increased my chest discomfort (which seems to make me feel much more oxygen-starved). Physical inactivity, particularly laying flat, seems to soothe my illness (it eases all of my symptoms, including the pressure in my chest) - any activity seems to aggravate it. I HAVE found that wearing compression stockings, drinking regularly and adding salt to my diet all help to reduce my fatigue levels and get me through each week. Without my compression stockings I can't walk from my office to the plaza and back at lunch time (about 5 minutes each way) without feeling a lot more debilitated in the couple of hours afterwards. Not much of a life, I agree, but at this point I'm just trying to keep working so I can continue to support myself - I'm still hopeful that there will be a medical breakthrough that will make life easier for all of us. Meanwhile, I've developed levels of endurance so high that if there was a nuclear holocaust I could probably climb out from underneath the rubble and start a new civilization....
  8. Hi. Infection aggravates my dysautonomia, leaving me with much more severe symptoms. Around 18 months ago I had a succession of infections (chest infection, laryngitis, tooth abscess, sinusitis, conjunctivitis and tonsilitis) - I was extremely sick, but felt much better, and my dysautonomia symptoms eased, each time I took antibiotics. I figured that I felt better because I was addressing the cause of my aggravated symptoms (the infections).
  9. Hi. I had night sweats for around 20 years from my mid-twenties - definitely not menopause. When I didn't get a night sweat I would often wake at night burning hot, even in the middle of winter in an unheated bedroom. My sweats were stopped with a small dose of Ibuprofen at bedtime. Stopping the night sweats mean't I got a much better sleep and my overall illness was more under control. My night sweats stopped almost two years ago, so I don't take the Ibuprofen now. I'm not sure whether this would help anyone else.
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