Macca

Hi Katcanny The clinic at the Austin Hospital is really a blood pressure clinic - i.e. they treat POTS, hypotension and hypertension. Prof Chris O'Callagan runs the clinic and his main interest is POTS.

Hi Katcanny While POTS is a hard condition to manage, it sounds like you are making positive progress with an early diagnosis and seeing Chris O'Callaghan. I'm a Dad, so I know how hard it can be to have POTS and look after your kids (my wife has been amazing over the years since I got sick) particularly when you are still trying to stabilise your condition. Something that may help you is to see an Exercise Physiologist who has a good knowledge of POTS and who can help you manage (& hopefully gradually improve) your physical capacity. When I lived in Melbourne I saw Nathan Butler at the Active Health Clinic in Blackburn. Nathan specialises in treating people with POTS and also people with chronic fatigue syndrome: I found that pacing myself and slowly but steadily increasing my exercise was a really important component to improving my POTS and physical capacity. When I first got sick in 2011 I also saw a psychologist who specialised in helping people adjust to living with chronic illness. There is a psychologist at the Active Health Clinic and if it is the same person as a few years ago, then I believe that she has POTS too, so first-hand knowledge of what you are going through. Your may already be aware that your GP can organise a chronic disease management plan for you that will provide additional Medicare funding for the allied services such as an exercise physiologist or psychologist. I've provided some details below in case you need some info: http://www.health.gov.au/internet/main/publishing.nsf/content/mbsprimarycare-chronicdisease-pdf-infosheet Best wishes.

Hi Katcanny I used to live in Melbourne (in Brisbane now) and Chris O'Callaghan was my POTS doc for most of the time I was there. In short, Chris is great; really caring, takes the time to get a good patient history and he has a very good knowledge of POTS, particularly relating to hyper mobility and EDS. He can also prescribe Midodrine, which you may already know requires special approval via the PBS. If you are seeing Chris at the Austin the consult is also bulk billed. The only downside I found was that Chris is particularly focused on hyper mobile and EDS related POTS and he couldn't help me as much with my neurological issues (I also have small fibre neuropathy). He also doesn't proactively prescribe Mestinon, which has proven to be my most helpful med, however he was happy to prescribe it on my request. The other doc I found to be really good in Melbourne was Dr Victor Gordon at Monash Neurology. He runs the autonomic testing clinic at Monash. All the best

Hi Bijana Welcome from a fellow Aussie, based in Brisbane. Sounds like you're getting good quality medical support in Sydney. I take Mestinon and find it very helpful. All the best!

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:

Hi Jane A few Brisbane based doctors who maybe suitable for you: Professor Pamela McCombe - Neurologist http://standrewshospital.com.au/doctors/Pamela-McCombe Dr Rob Henderson - Neurologist http://wesley.com.au/doctors/Robert-Henderson Prof McCombe is my current treating specialist and she has an excellent knowledge of Dysautonomia. I know her waiting list isn't too bad at the moment. Dr Henderson has an excellent reputation, but I haven't seen him and I don't know how long the wait is to see him at the moment. Dr Gary Deed - GP http://www.mediwell.com.au Dr Deed is a great GP, who has good knowledge of Dysautonomia - though I think he will refer you to a specialist for ongoing care. I think he maybe able to assist specifically with your digestion/nutrition issues. Outside of Brisbane, I have also seen Dr Chris O'Callaghan in Melbourne. He is really fantastic, but has a particular focus on the blood pressure/hypotension issues. I'm not sure he would be able to assist with digestion issues - but you can ring his office to check. There are some other neuros in Melbourne who are good with this stuff, but probably no better than Prof McCombe or Dr Henderson who are closer to you. Best of luck and I hope you get the help you need soon.

Hi Josh Over the years I've had my fair share of 'scary' POTS symptoms, eg tachycardia, chest pain, nausea, syncope etc. It can be really hard to deal with, but I've had a thorough cardiac work up and I know my heart is ok. My POTS doc has reassured me that while the symptoms are scarey they are all part of POTS and not indicative of heart problems. If you haven't already I'd suggest talking to your doctor about the symptoms to make sure everything is ok (i.e just the POTS). I also found talking to a psychologist who specialises in helping people with chronic illness really helpful, particularly dealing with anxiety about my symptoms. In regard to carrying the drawers up the stairs, I have found it's really important to stay within my physical limits and slowly but surely try and increase how much activity I do. I'd suggest avoiding physical activity that makes you feel ill. An Exercise Physiologist can can be really good at helping build an activity plan and your doctor maybe able to refer you to someone. As part of this, taking time to educate your family about the seriousness of your illness and your limitations might help - perhaps your doctor can assist with this too? Take care.

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/information-resources/ncs/ncs-general-information It would be worth checking the list of docs noted above, as a specialist who understands dysautonomia makes all the difference to getting an accurate diagnosis. Good luck!

I found Mestinon really helpful for fatigue and dizziness. There are lots of posts on the forum with more details on this drug. I also find Midodrine useful too.

Moons only on thumbs and vertical ridges on nails appeared shortly after POTS started.

Hi Becia The link below provides a quick summary on Mestinon for POTS - how they think it works and it's benefits. http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=38923 I found Mestinon really useful. Improved my stamina, fatigue, reduced dizziness & reduced tachycardia and hyped up feeling. It improved my ability to stand for longer, but it's not as good as Midodrine in that regard. I started on 60mg, but it was too much so dialled back to 10mg and built up and found 30mg just right. Took me a couple of weeks to get used to it, but I found side effects very manageable. Good luck!

I get positive benefits from Midodrine, but only for 2-3 days and then it causes me to get big drop in BP and I feel awful for a day or two afterward. It's weird!

Hi Goschi I've found that has my exercise tolerance improved, my overall symptoms have reduced substantially, so my overall ability to function has gotten better slowly but surely. It's been a lot of hard work - as my POTS doc told me yesterday: "you're grinding out a recovery".

Hi Andy Exercise has been a huge help to me. I had to start at a really low base, walking for a few minutes a day. At that stage I didn't know I had POTS (had a CFS diagnosis) otherwise I would have gone with recumbent bike. I built up very slowly but surely over 3 years and now do two days of exercise in a row and rest on the third. The exercise I have worked up to is 40 minutes on the upright bike and swim 1.2km on the second day. I also try and do a walk or two for around 15-20 minutes every day. Exercise has given me a substantial decrease in most symptoms including hypotension, fatigue, dizziness and shortness of breath. I feel worse when I don't exercise and also found it really helpful in reducing the length of a flare. The key though was not to overdo it and only increase exercise carefully. I also found cardio much better than strength exercise.

Hi jknh9 - sorry to read that you are having a difficult time. I thought it might help to share my story of returning to work. I returned to full time work about a year ago, after two years off work with POTS. I felt like I was ready to go back to work, with reduced symptoms that were pretty well controlled with meds. I also moved cities for the new job and that brought its own stresses. The first few weeks in my new job were really hard going, but I kept working and over time my symptoms reduced and a year later I am doing really well with only minor symptoms and limited need for meds. Some things I found helpful when I first got back to work were to keep up with medication, exercising (including having a couple of walks during work hours) and taking a rest during my lunch break (incl a lie down if I could). My employer also knew about my condition and they were accommodating, for example I could work at home when I felt really bad. It's definitely a challenge going back to work, especially with a move on top of it, but my experience is that it will get better slowly but surely. Let us know how things go for you and please let me know if I can answer any questions. All the best.

Hi writerlymom, my POTS doc referred me to an exercise physiologist clinic that specialises in POTS and CFS. The clinic is in Melbourne, Australia, so probably not accessible for you, but link to their website below if it's of some help: http://www.activehealthclinic.com.au/faqs-about-cfs/orthostatic-intolerance-pots/

Hi Goshi, yes I am mostly symptom free when I walk; as long as I walk quickly I am just a little light headed at the end. If I walk at a slower pace my BP starts dropping more quickly. I feel great after swimming. The key to success was to start at an exercise level that didn't cause an increase in symptoms and slowly but surely push the envelope. I did go to hard with it about six months ago after joining a gym and had a doozy of a flare that that set me back. Really frustrating when I would have a flare or an illness (eg flu or cold) as it would set back the exercise progress & my POTS symptoms. However I found that by not giving up trying my symptoms improved so much over 3 years. Best of luck with it!

I've had great success with graded exercise. I started 3 years ago, with walking every second day. At first I could only walk for 3 minutes a day, otherwise I was mostly confined to bed. I increased my walking by 20% every 2 weeks and now do a 45 min walk. As time has gone by my symptoms have improved significantly. I have added in swimming (I can now swim 1km 3 times a week) and ride a stationary bike for 30 minutes 3x a week. I am also back at work full time, from 3 years ago when I couldn't work at all. I believe that a significant reason for my improvement has been due to exercise. I found it really really important to pace myself and slowly increase the exercise so it didn't cause significant fatigue or a flare. I got advice from am Exercise Physiologist who was experienced with POTS and that helped a lot - particularly with pacing strategies, suitable exercise and dealing with set backs. Finally, I found aerobic exercise (walking, swimming and bike) much better than strength exercise. Good luck with it! It's hard work, but in my experience, really worth it.

Hi, yep I get tachycardia when I sleeping and it will wake me up. I don't get it all the time and I don't suffer from anxiety, it's just a POTS thing. There was another post on this topic recently where some other people also confirm they have this issue. Some people take a low dose beta blocker to help with it, I sometimes take a nighttime dose of Mestinon, which calms the tachycardia.

Hi gjensen - I get numbness and tingling quite frequently, in my hands and feet mostly. I've never had a good answer as to why - I had nerve testing and that was generally ok. I find it is worse when I have overdone things physically and it can be a warning sign I need to have a rest.

Hi everyone - I had a domestic flight for 1.5hrs yesterday and felt awful afterward. Nothing helped in terms of meds and/or compression stockings. So I went to a local hospital and they were happy to provide me with a bag or two of IV fluids, which had me feeling much better. My question is, for those that have had IV fluids, how long to you find the benefits last? Thanks.

I didn't tolerate Florinef and had a lot of trouble tolerating Midodrine (but for some reason finally started getting positive effects from Midodrine and limited side effects after six months of off and on trying). The most useful drug for me has been Mestinon. I also find liquorice root helpful too.

Hi Millyaulait I am sorry you're going through such a difficult time. This is a tough illness and the symptoms we get are challenging to deal with, BUT please don't give up hope! I have been ill for years, but have very slowly (& with lots of ups and downs along the way) improved and enjoy a good quality of life again now. That is the experience of many on this forum and you are only young, so you are better placed than most to enjoy a recovery. As you go through this illness you need to ask for psychological help when you need it; either from family & family, or from your doctor or a psychologist. I found getting professional help made a big difference, in particular in helping with coping strategies. It's a tough illness, but you 're not alone and the current symptoms will pass . Please ask for help from those close to you. Wishing you all the best.