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Macca

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About Macca

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    Brisbane, Australia

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  1. Hi Megan I have the dual diagnosis of POTS and Mast Cell Activation Disorder. The POTS was the first diagnosis and mast cell diagnosis later as the symptoms became more obvious. I get Urticaria, flushing, asthma, many allergies, anaphylaxis, but no facial edema. My specialist’s view is the the mast cell disorder causes the dysautonomia, not the other way around. I agree, as since I started all the mast cell medication the POTS symptoms are much better. In terms of medication, I started on Xolair a year ago and that helps a lot, including with the POTS symptoms. I also take daily antihista
  2. Hi A new fainting/syncope clinic has opened at the Sydney Adventist Hospital. Might be helpful for suffers of Dysautonomia who live in NSW: https://www.sah.org.au/blackouts-and-faints
  3. Hello, would anyone be able to kindly recommend a GP or specialist in Brisbane who specialises in autonomic dysfunction. I was diagnosed with CFS by a Rheumatologist after seven years of symptoms (POTS related) however I have had no nerve function tests or autonomic testing performed.  I have been given no medication to help me apart from suggesting an antidepressant for pain. I currently take reflux medication. 

    I am on the waiting list to see a particular neurologist but any recommendations in the meantime would be helpful. I have a feeling I have small fibre neuropathy as my hands and feet are often red and painful. Unfortunately from what i heard, there are no testing facilities in Australia that do skin punch biopsies to test for small fibre neuropathy. 

    Thank you. 

  4. Hi Anne Dr Brendan Hanrahan at the Wesley in Auchenflower is really excellent. Very thorough and open minded.
  5. Hi I also have MCAS & Dysautonomia (Dysautonomia much less of an issue now) and have had related GI issues. Wondered if you had a change of diet being in a different location that removed some food triggers for your MCAS? Also, I thought it might be useful to highlight a few things have made a positive difference to my GI symptoms: 1. I tested positive for Exocrine Pancratic Insufficiency and started on Creon (enzyme replacement therapy) and that made a huge positive difference. Apparently the over active mast cells can cause a problem with normal enzyme production. My GI improv
  6. It’s common for people with POTS to get neuropathic sensations like you’ve described (e.g. tingling and numbness). With POTS it is often due to Small Fiber Neuropathy, see link below for more info: https://en.m.wikipedia.org/wiki/Small_fiber_peripheral_neuropathy It maybe good that your doctor has prescribed Lyrica, as this is a common treatment for Small Fiber Neuropathy. Best wishes.
  7. Hi Mikayla - I’ve sent you a PM with some suggestions re doctors in Brisbane.
  8. Hi - I have MCAS and POTS (MCAS is the main problem these days). I was sitting next to a friend who smokes last week and noticed the smoke triggered my MCAS symptoms. It wasn’t too bad compared to food triggers, but definitely felt it.
  9. Hi Steven There is an autonomic testing clinic at Monash Neurology, based at the Monash Hospital in Clayton. As far as I know, they do the most comprehensive autonomic testing in Melbourne. Tests include tilt table, QSART sweat testing, Valsalva Blood Pressure Response and Small Fibre Neuropathy tests. The clinic is run by Dr Victor Gordon. I only know of Dr Sue Corcoran by reputation, which is that she is very thorough and knowledgeable, but perhaps an abrupt bedside manner. Dr Chris O’Callaghan is noted on the DINET website and he is based at the Austin. He was my Specialist when I
  10. Hi Samantha I’m a fellow Aussie, based in Brisbane. I’ve got a great doctor I see here in Brisbane who takes care of my POTS (a sub-type of autonomic dysfunction). I have found two meds that work for me quite well (Mestinon and Midodrine), but it was a year or so of trial and error to land on those two. There is a list below from DINET that provides details of helpful medications: A lot of people with autonomic dysfunction take Florinef to help with low blood pressure and Tachycardia, but unfortunately I couldn’t tolerate it. If you have been diagnosed in Adelaide does t
  11. I also have SFN with POTS. I’ve had a lot of testing done to identify the underlying cause and the only thing that has been found so far is that I have Exocrine Pancreatic Insufficiency, which my specialist doubts is the cause of the SFN/POTS. Unfortunately from what I’ve read in many cases of SFN the underlying cause is not found and it’s a case of managing symptoms, however it should be thoroughly investigated to be sure (eg ruling out Celiac, Diabetes etc). I was prescribed Lyrica for the SFN pain and found Mestinon really helpful for the POTS. As a suggestion, if you search the DINET
  12. Hi - the unusual sensations are often seen with people who have POTS and a related Small Fiber Neuropathy (SFN): https://neuropathyjournal.org/small-fiber-neuropathy/ My understanding is that SFN and POTS are part of the same neuropathy issue. There is a number of earlier posts on the Forum about this - please see examples below:
  13. Hi dm866 Sorry you're having a difficult time. In my first TTT I didn't have a large increase in heart rate, and my blood pressure stayed normal for 5 mins, but then it dropped quickly and I passed out. I was told I had Vasovagal Syncope. This result was despite having frequent episodes of orthostatic tachycardia in the period before the test. In my second TTT I was classic POTS, with rise in heart rate by 40bpm and I didn't pass out. Dysautonomia has a number of sub-types, not just POTS and it might be worth checking the Dinet website for info, for example: http://www.dinet.org/index.php/inf
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