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Everything posted by anna

  1. So so very sorry you have to be going through this, take care sending you positive energy. Anna
  2. About 8 months ago my mother was diagnosed with mid stage dementia with Lewy bodies, she had a memory assessment, I was present and I can assure you I could not answer half the questions my mother did with ease! I have found that I have from very young had issues with memory and processing information, but I am very much worse on days my other ANS dysfunction symptoms are bad.
  3. " A scan that shows no unexpected changes in the brain does not rule out conditions such as Alzheimer's disease because in the early stages of the disease the changes can be difficult to distinguish from normal ageing. " http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=260 Did you mean early onset Alzheimer's or Alzheimer's at an early stage?! sorry lI have lots of brain fog at the moment.
  4. As far as I recall we were told the waiting time was around 18 months on the NHS or much much quicker via the private route, I did hear talk that Prof. M was possibly leaving the Autonomic and Neurovascular Unit, in London, I am not sure whether this is actually going to happen but it might be wise to contact his team and see what is going on.
  5. One test is a vaccine challenge test, a friend of mine is having this test done to see if she has a PIDD. http://ainotes.wikispaces.com/file/view/Use+and+interpretation+of+diagnostic+vaccination+in+PID+-+JACI+2012.pdf
  6. I and my 3 children are often like this!
  7. A better test for this might be a stress test echo http://www.nlm.nih.gov/medlineplus/ency/article/007150.htm It is much less invasive and to be honest a much more logical test to take as you are having this issue on exercise.
  8. So sorry that this has happened to you, this sort of issue tends to send our symptoms into over drive for a while. I hope you are able to move through this part of your life without too much knock on effect to your body. Take care of yourself.
  9. Thank you for posting this link it is a very helpful one for my family as my son's Dr. continually puts my son's sleep issues into a different box to his ANS dysfunction issues yay proof I am not going mad lol!
  10. It is all so odd my son's Dr. told us that son's symptoms are related to son's diagnosis of Ehlers Danlos syndrome not POTs and the Dr. also said my son's chronic fatigue is just that chronic fatigue and again not POTs related. Oh my head really does hurt with all this confusion going on.
  11. Batik, my son has the same problem his TTT was negative his Dr. told as his problems/symptoms were not down to POTS and that was that grrr.. BUt son still has major problems going on! Some one here posted an article a short while ago that is very useful. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3564028/
  12. Tobiano this link may be of use: http://www.patient.co.uk/health/postural-orthostatic-tachycardia-syndrome
  13. You might want to look at blood vessel spasms! While looking around the net I came across this Dr. not sure but he may be of use to some, I am not sure if this Dr. is completely on the ball but he does raise some interesting possibilities. http://www.mvpdonline.com/mvp-dysautonomia-people/mvp-dysautonomia/
  14. So true Issie numbers do not seem to always well in my families case often correlate with symptoms.
  15. I will try and get my scatty brains together enough to get some emails out, I have decided to get hold of mine and my children's medical records to be able to back up my thoughts.
  16. Now this is starting to make sense, my mother, myself and my children find coffee makes us fall to sleep!
  17. I wonder if this could relate: the friend I wrote about with high prolactin is now being evaluated for primary immune deficiency, which I believe there is a link with autoimmune issues.
  18. I would ask why can they not see beyond the whole it's all in your head rubbish opps I am on a rant here sorry!
  19. Ok my paternal grandfather, father, aunt, me my twin boys and my daughter. My husband (diagnosed with mild Ans dysfunction) 2 of his sisters show major signs, husbands father had PAF so I guess quite a lot of us! Oh we are /were all hypermobile/eds people.
  20. Anxiety and depression - mental health conditions are sadly quite common in the general population and are estimated to affect around 25% of people. If you look more specifically at people who attend for physiotherapy it is thought that around 50-60% of people attending for treatment will also have a mental health condition. Anxiety and depression affect the way we think, feel and behave. They also have a variety of effects on the body. The overall result is that people with mental health conditions often experience more pain and a deterioration in their mental health can coincide with an increase in their pain. Several of the issues we've mentioned already are common with anxiety and depression; hypervigilance, fear, stress and low mood, loss of control, pain focus and catastrophising – so it's easy to see how mental health can influence pain. Fortunately the brain can also turn pain intensity down by flooding the nervous system with very strong forms of pain relief that are reportedly many times more powerful than medications. It has a number of systems dedicated to this including something called 'descending inhibition' which works within the brain and spinal cord to stop some nerve impulses reaching the brain. There are ways in which you can engage these systems that help to turn pain down. The above is from a physiotherapy chronic pain management tool kit! http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0035068 A very good read.
  21. Psychology of Pain, Hypervigilance and Attention to Pain GEERT CROMBEZ1, STEFAAN VAN DAMME1, CHRISTOPHER ECCLESTON2 1Department of Experimental Clinical and Health Psychology, Ghent University, Ghent, Belgium 2Pain Management Unit, University of Bath, Bath, UK geert.crombez@ugent.be, stefaan.vandamme@ugent.be, c.eccleston@bath.ac.uk Synonyms Heightened vigilance; overallertness; heightened attention Definition Hypervigilance to pain or somatic sensations is the excessive tendency to attend to pain/somatic sensations, or the excessive readiness to select pain-related information over other information from the environment. In the context of pain, hypervigilance is assumed to be initiated and maintained by its immediate threat value. Pain-related fear and catastrophic thinking have often been found to be strong predictors of hypervigilance to pain. This sort of thing has been on the diagnostic table for many years, I think it is about time we start to put our views across now, I for one am getting quite cross with being told that we are hyper vigilant that is rubbish. My children showed signs of ANS dysfunction from birth how can this be all to do with them being hyper vigilant.
  22. Can I ask your collective brains a related question?! My children are on Domperidone for gastroparisis, I have just realised that domperidone is a peripheral dopamine antagonist and has been used also as a drug to help with orthostatic hypotension: TREATMENT OF AUTONOMIC NEUROPATHY TREATMENT OF ORTHOSTATIC HYPOTENSION (Part One) Roy Freeman, MD Associate Professor of Neurology Harvard Medical School Boston, MA USA Dopamine Antagonists The dopamine antagonists metoclopramide and domperidone may also treat orthostatic hypotension. These agents most likely inhibit the vasodilating and natriuretic effect of dopamine or increase noradrenalin release due to blockade of prejunctional inhibitorydopaminergic receptors. Now, as my children do actually seem to benefit OH wise, from taking this med could it be plausible to think that this may have something to do with why my children's dr. can not find any haemodinamic changes when he does their TTT's but they are still very symptomatic.
  23. I am not sure about my percentage points but I held my breath for 25 sec and my O2 went from 97 to 93 the second time I did this I held my breath for 26 sec o2 stayed at 97 but my heart rate went from 67 - 63 I think I need to change the batteries in the pulse ox gadget and try again later.
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