Macca

I don’t take a SSRI or SNRI myself, but I know that some immunologists prescribe doxepin as an antidepressant for MCAS patients because of its strong antihistamine effect: https://en.m.wikipedia.org/wiki/Doxepin it might be worth looking into.

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 antihistamines and asthma meds. That said the mast cell symptoms are still not fully controlled, so looking to start ciclosporin next month. Hope you get some more definitive answers soon.

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

Hi Anne Dr Brendan Hanrahan at the Wesley in Auchenflower is really excellent. Very thorough and open minded.

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 improved, but also energy levels and overall well-being. 2. I use a H2 blocker - Ranitidine. This has also been really good, but not as dramatic as the Creon. 3. I kept a food diary and identified triggers for the MCAS. Turns out there was a lot foods causing me GI issues and when I cut them out I felt a lot better. I found it reasonably easy to identify the foods, as allergy-like symptoms were quick to come on - e.g. hives, itchy eyes, runny nose etc. 4. I take Xolair and this has reduced the mast cell problems and related symptoms significantly. Just about to up the dose on this to see if we can get further improvement. Hope that helps. All the best.

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.

Hi Mikayla - I’ve sent you a PM with some suggestions re doctors in Brisbane.

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.

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 lived in Melbourne and he was knowledgeable and caring. See link to his clinic below: http://www.austin.org.au/page?ID=127 Good luck and hope you get the care you need.

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 that mean you have a specialist there who is caring for you? If not, there are quite a few autonomic dysfunction specialists in Australia, but I don’t know if any in Adelaide sorry. There are some in Melbourne if you’re able to travel a relatively short distance. The DINET website has the details for Dr Chris O’Callaghan who is based at the Austin Hospital in Melbourne. Chris is very good and he will do a Skype consult for people who are interstate. I would also suggest using an Exercise Physiologist who is familiar with autonomic dysfunction. I found graded exercise was very helpful in improving my functioning over time. I had to start very slow, but increased over time and my overall health improved with increasing exercise tolerance. There’s a place in Melbourne that specialises in POTS: http://www.activehealthclinic.com.au/faqs-about-cfs/orthostatic-intolerance-pots/ I used these guys when I lived in Melbourne and they are great. Pretty sure they will do a Skype consult. The only other advice I would provide is to be patient with yourself and accepting that you have a chronic illness. It’s a very challenging condition, but many people (me included) get much better over time. Hang in there. Best wishes.

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 forum for “Small Fiber Neuropathy” or “SFN” you will find lots of posts from other members who have this condition and the previous posts may provide you with some insight into your condition. Best wishes.

I developed POTS in 2011 and I was essentially bed ridden for months. I also struggled in the first 18 months to get the right diagnosis and the right medication mix for me. I found that over time and with careful graded exercise I got better. I returned to work in 2013 and each year I have improved, slowly but surely, to being almost back to full health today. As my doctor said "recovering from POTS is a marathon not a sprint". It's hard, but please take heart that so many people do get better with time.

Hi Katkanny I used to live in Melbourne, but moved to Brisbane a year ago. I saw Dr O'Callaghan and later Dr Gordon in Melbourne. I went to the autonomic testing clinic that Dr Gordon runs at Monash Hospital and they did a number of tests that confirmed autonomic dysfunction and POTS. I also saw an Exercise Physiologist based in Blackburn, Nathan Butler. Nathan has a particular interest in helping POTS patients and I found doing a graded exercise program really helped improve my functioning. Please feel free to pm me on the details for Nathan's practice. If your GP refers you to Nathan then you maybe able to get some sessions bulk billed. In terms of functioning; I went from very ill in 2011 and being essentially bed ridden and unable to work, to almost fully functional today. I still have some symptoms (e.g. I can't stand for any long periods without Midodrine), but I work full-time, I'm able to do lots of exercise (swimming, biking and walking) and the fatigue I used to suffer from is gone. I only need medication if I have to stand for longer periods of time, if I get a bad cold or the flu, or when I have to fly. It's frustrating to be really sick with POTS and medications are a process of trial and error. I tried lots of different medications before I found the right mix for me (Mestinon with occasional Midodrine). Hang in there, so many people improve over time!

Hi Katcanny There is a neurologist is Melbourne called Dr Victor Gordon. He runs an autonomic testing clinic at Monash Hospital (they do a whole range of tests in regard to POTS). He is very knowledgeable and a decent doctor. Hope that helps.