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.

Hi Zebro I live in Brisbane, but I'm aware of one specialist in Sydney, Dr Judith Spies, who is a neurologist with a particular interest in autonomic disorders. Please see the the link below that has more details: http://sydneyneurology.com.au/ms-clinic-neurologists/ I hope that helps.

The licorice root works in a similar way to Florinef (i.e. it helps the boys retain sodium and fluid and lifts blood pressure) so if your husband already takes Florinef I'd suggest being careful not to take both. Pity the neurologist will not try Mestinon yet. I couldn't tolerate a lot of drugs, but Mestinon was excellent for me, particularly with fatigue. Best wishes.

Hi Similar to the earlier posts, fatigue was a big issue for me when my POTS was severe and I was mostly bed ridden. As my POTS improved, the fatigue improved. I also found that Mestinon was very good at reducing fatigue. In addition, I found that pacing my activity and regular rest breaks was also an important way of limiting fatigue. As part of pacing, I did graded exercise, which involved starting at a very low level of exercise and building up slowly over time.

I found Mestinon was really good for dizziness and the swaying sensation. Would take it away completely.

I'm obviously not a doctor, by my guess is that the first positive biopsy would be a pretty definitive result for SFN (even with a second negative result) as it would have shown nerve fiber damage. I think this is particularly true if you are having sensations that are consistent with SFN. That said, there may well be other reasons why POTS patients might get sensations similar to SFN, which I'm not aware of.

Many people with POTS have Small Fiber Neuropathy, which causes the tingling and itching sensations you describe. See some links below with more info: http://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem

Hi Katcanny The new drug is likely to be Dihydroergotamine - a real mouthful to pronounce! It's primarily a migraine drug but can also be used for POTS. I've tried sudafed PE (pseudoephedrine) and found it to be really good for POTS, improved my ability to stand and reduced fatigue dramatically. There are some earlier posts on other people's experience as well:

I find flying makes my POTS symptoms worse. What helps a lot is to increase my meds (Mestinon in particular) for the flight and for the day or two afterward, and I make sure I am well hydrated throughout the flight. I also rest after the flight if I can, maybe just a take a walk to get the circulation going. I'm not sure 100% if flight time makes much difference or not, but I think intuitively it would. The longest flight I have done since I got POTS was six hours and I managed that ok, but on some shorter flights I have felt quite ill after the flight. Good luck!

I feel for you Kat. It's really hard to adjust to losing so much physical capability; hard for you first and foremost, but also hard for your family. I think Sarah's suggestion to take your partner to your appointment with Dr O'Callaghan is a good one. My wife came to my tilt table test and that was a big eye opener for her. I also found it hard not being able to play with my kids the same way I had done previously. Importantly, my kids understood that Dad was sick and I found that over time I was able to find other things I could do with them that were within my physical limitations. In regard to your job, there a two key things I would recommend: 1. Check the Fair Work Australia website in regard to your rights and termination of your employment due to ill health: http://www.fairwork.gov.au/leave/sick-and-carers-leave/long-periods-of-sick-leave You can also call Fair Work (or your union, if you are a member of one) if you need to check on your rights. 2. Ask your superannuation fund if you have income protection insurance. Most people do as it is provided by default. The insurance will provide you a replacement income if you lose your job, or if you run out of sick leave. The rate of payment is typically 75% of your normal salary. Finally, try to stay strong! You will have hard days, but for many people POTS gets better over time. When I first got POTS in 2011, I lost so much physical ability and I was essentially bed bound. As a result I had to take a year off work. Slowly but surely things have improved and I have gotten a lot better. I returned to full-time work in 2013 and I'm fitter now than before I got sick. It's a slow recovery and I found that I had to accept that and focus on having the best life I could. Best wishes.

Hi Katcanny Sorry to hear that the Midodrine isn't working for you. While it is disheartening to have nasty side effects, there are other medications that Dr O'Callaghan can and will try for you. I didn't have the best reaction to Midodrine either (though not a severe as yours) and when I went back to Dr O'Callaghan he noted that we would work through the list of drug options until we found something that worked and that's what we did. A drug that has been excellent for me is Mestinon. Dr O'Callaghan normally doesn't prescribe it, but it was happy to let me try it. All the best.

Hi Katcanny - yes I did go to the Austin Blood Pressure Clinic, they were my treating clinic for a few years when I lived in Melbourne. When you arrive they normally do a basic lying standing blood pressure test and then you meet with Chris or one of the Registrar doctors working with him. The doctor will discuss any further testing required and treatment options. I gather from your previous posts that you are on Florinef already so my guess is they will look at whether you need another medication to supplement that - e.g. Midodrine. Unfortunately there are no quick solutions to feeling better with POTS and it's often a case of a slow recovery and managing symptoms as much as possible with meds, fluids, salt, exercise etc. If you are struggling to return to work, aside from Centrelink support, you can check with your superannuation fund whether you have default income protection insurance that will make payments while you're too ill to work. The insurance would typically pay 75% of your normal salary. Best wishes.