Australian Patients On Midodrine

[jodie watson]

I am an Australian mother of four and I am new to the Forum. I have been diagnosed with POTS and previously, 9 years ago with Orthostatic Hypotension. I am interested in finding any other Australians with dysautonomia's and also if any of them have had any success with Dr O'Callaghan in Melbourne?

I am going to be seeing him as soon as I can get an appointment and have spoken to him on the phone. I am keen to try Midodrine and would like to know if any other Australians on the forum have tried it?

I was also wondering if anyone else has been previously diagnosed with Orthostatic Hypotension which has changed to Postural Orthostatic Tachycardia Syndrome?

I am very thankful for finding this forum as it is very helpful to be able to read and talk to others who experience this condition with it's bewildering array of symptoms! I am particularly bad at the moment and needing information from others in Australia who have this condition as no one seems to have heard of it, either in the general public or in the medical arena.

Look forward to hearing from some Australian patients

Jodie

[Troy]

Hi and welcome,

I am male in my late 20's living at home with my folks due to this disability and I'm also from Melbourne and I have a hyperadrenergic and hypertensive version of POTS and some other autonomic abnormalities for about 11 years now. I haven't heard of Dr O'Callaghan but me and another Aussie guy in this forums see an Autonomic specialist named Professor Murray Esler who works both at the Alfred Heart Centre and Baker Institute, his great. I tried Midodrine an I have heard it helps a lot of people but because of my specific situation where I have an abnormal version of Dysautonomia that is extremely sensitive to chemical substances, drugs and medications I was unable to tolerate it.

Postural Orthostatic Tachycardia Syndrome usually has two types, the hypertensive version and the hypotensive version, one causing reduction of blood pressure when standing up (Orthastatic Hypotension) and the other as in my case(Orthastatic Hypertension) where my blood presure skyrockets and my heart rate doubles due to postural changes. but other than the changes in blood pressure all the other symptoms between the two versions are quite similar. Wish you all the best and I look forward to hearing more from you.

[jodie watson]

Hello and thank you for your reply "Endure".

I do not live in Melbourne, I live in Northern NSW in the Byron Bay Hinterland. I am coming to Melbourne to see Dr O'Callaghan when I can get an appointment. He and Prof Esler are the only two doctors in Australia who specialise in dysautonomia's and Prof Esler is not taking new patients at the moment. Dr O'Callaghan works with Austin Health who are associated with the University of Melbourne.

I have been taking Coralan (Ivabradine is the drug) which was prescribed by my Cardiologist who I was put under after I ended up in hospital last year in March last year. It helped for a few months and then stopped working altogether and when I went back to see my Cardiologist he increased the dose. I have been on the increased dose for 3 months and all of my symptoms have gotten much worse. I have recently stopped taking it 2 weeks ago and I still have the orthostatic issues of course; yet I feel my body is coping better with out it. I felt that by slowing down my heart it was making it much harder for my body to cope, as of course I realise now that my heart is compensating for what happens when I stand up!!

I have done a lot of research and as fascinating as it is to the medical profession and to those of us who like to understand and learn for ourselves it certainly isn't easy to live with!!!

I hope that Prof Esler has been able to give you some relief from your symptoms, though it sounds that your case is indeed rare and very reactive. I hope that you have good support from your parents, as it is hard if you don't. I am lucky to have support from family both extended and immediate. I have had problems on and off all my life since I was a teenager so, my family have always known there was something wrong, and weren't terribly surprised after the birth of my third daughter when things went particularly hay wire and haven't settled down fully since. That was 8 years ago.

Even though people are supportive, they also get frustrated by the huge impact this disorder has on our lives and subsequently theirs as well. I at least know that someone else who has the same condition even though we all vary in symptoms and causes etc understands what it is like to live day to day with this. You would also understand how frustrating it is to not know day to day or even hour to hour how you will be feeling and need to just accept whatever comes and know that you have no real control over it. I thought I was a patient person before, I had no idea what real endurance and strength of character meant until living with this condition. It has made me appreciate the small things we all take for granted and to be accepting of the things we cannot change.

Any how sorry for rambling on, I guess it is good to talk to someone who knows what you are talking about as I said before.

Jodie

[dianne.fraser]

Jodie

I'm in Canberra. Welcome to the forum - I think you'll find it a really wonderful source of comfort, support and information. It really is lovely to find others who are facing similar challenges.

After a lifetime of illness, two years ago I was diagnosed with cardioneurogenic syncopy. Like Endure, I don't tolerate medications well, but I use the non-drug approaches to dysautonomia self-management.

It can be difficult to find medical help with our illness, wherever we are in the world, I think because doctors rarely see it. I'm so glad that you'll be seeing a doctor who is familiar with dysautonomia and who might be able to discuss different treatment options with you. Good luck and best wishes.

Dianne

[suziebear]

Hi Jodie,

(and everyone else)

I am also a young mum from Australia - Brisbane to be precise and I too suffer from POTS.

There is actually a few specialist in Brisbane who specialise in Dysautonomia, NCS and POTS.

The Royal Brisbane Hospital Neurology department have a Autonomic Function unit that perform all the Autonomic Function Testing that is avialable overseas and in Victoria.

Depending on if you are private or public who to see.

Dr Rob Henderson runs the Autonomic Function Clinic at the Royal Brisbane and Womans Hospital. You can see him as a private or public patient. He has written research papers on Dysautonomia and POTS with Dr Pamela McCombe.

Dr McCombe is at St Andrews in Brisbane as well as the Royal Brisbane and her knowledge on Dysautonomia is amazing.

There is also Dr Wayne Stafford at St Andrews who is a Cardiologist and Dr Stephen Pavia at the Wesley who is also a cardiologist that both are great for autonomic problems.

I am seen by a neurologist and cardiologist and they are just wonderful and work so well together.

I am hyper sensitive to medicaitons and really need someone who knows about all this in great detail. I love my team.

I also know of others in Brisbane who are also looked after by this team for their POTS.

Midrodine is used for POTS. I personally am trying to avoid it but we have been discussing adding it to my medications for a while now. I do know of other POTS patients here in Brisbane who are taking it and swear by it.

If you want more info on the Brisbane team feel free contact me.

Are you on facebook at all? If so we have a great facebook support group POTS & Dysautonomia Australia. Also feel free to add me - Susan Donald.

Hope you are feeling better soon.

Cheers

Susan

[potsgirl]

Endure & other Aussies, Americans, etc:

Just a note to let you know that there are many of us who are extremely drug sensitive and can't take many drugs without nasty side effects. It seems as if a lot of people on this forum, when they're trying a new drug, have to start out at a very small dose, and go up very slowly.

Hope that helps someone out there...

Cheers,

Jana

[robster]

Hi Jodie,

I have POTS, but as far as I know I have never had orthostatic hypotension. My blood pressure is normal when lying down, slightly higher when sitting and highest after standing for a while. My heart rate follows the same pattern.

Midodrine (in very small doses: 3 or 4 mg) has been absolutely wonderful for me. Most days I take it, I can count on a few hours of much greater ability, both with my body and my mind. It lets me plan ahead somewhat. It is a short acting drug that seems to counteract my symptoms. If I do too much while under its influence I will come crashing down later (e.g. when it wears off in the afternoon), but never as badly as having done too much on a day I haven't taken the drug. For me it works best if I take some first thing in the morning. It usually wipes away the morning fog and exaustion, giving me a clear head and some physical stamina for about 3 hours. A lunchtime dose doesn't have quite the same effect for some reason. On my very bad days it may not be powerful enough to help me leave the house, but it usually has some noticeable benefit.

I have some side effects (dose-related) on some days, such as the goose-bumps and slightly unpleasant shivers, but as has been mentioned by someone else here, the drug clears your system within hours and these side effects even faster.

I have learned that drugs that lower my blood pressure or lower my heart rate make all my orthostatic intolerance and fatigue symptoms much worse. There's a reason my body needs a faster pulse and higher bp when I'm upright. I think that's why midodrine works for me, because it increases vascular tone. When I'm on midodrine my heart rate doesn't behave any differently, my bp is slightly higher but my symptoms, and therefore my life, are much more manageable.

I had very bad experiences with beta-blockers (tried for a few months, all bad) and florinef gave me side-effects but no real improvement over about a month. Midodrine worked from day one. I had uncomfortable side effects from the 5mg pill so I took it straight down to 3/4 of a pill and that is my magic dose. They say if you have POTS and these two medications haven't worked, Midodrine's next on the list to try.

Good luck!

Rob

[MightyMouse]

I'm not certain why you'd just want to hear from Aussie patients who've tried midodrine... the drug is identical to the midodrine offered in other countries and it may be useful for you to hear the experiences of the hundreds of others on the forum who use it, or have tried it.

While I am in the US, I found midodrine to be exceptionally useful in bumping up my bp without getting it too high overall. The only downside for me was that I'd have to time my doses perfectly or I'd have a really big drop in bp rather suddenly; and I did get the common side effect of goosebumps that could occur anywhere on my body, including my scalp. For me, it was a good drug to help keep me able to function at work and home.

[jodie watson]

I'm not certain why you'd just want to hear from Aussie patients who've tried midodrine... the drug is identical to the midodrine offered in other countries and it may be useful for you to hear the experiences of the hundreds of others on the forum who use it, or have tried it.

While I am in the US, I found midodrine to be exceptionally useful in bumping up my bp without getting it too high overall. The only downside for me was that I'd have to time my doses perfectly or I'd have a really big drop in bp rather suddenly; and I did get the common side effect of goosebumps that could occur anywhere on my body, including my scalp. For me, it was a good drug to help keep me able to function at work and home.

Hi Mighty Mouse

I asked for Australian patients as I don't know of any others with dysautonomia in Australia and was wanting to make contact with them and Midodrine is not approved by the TGA here for use and you have to get special permission to use it; so I was wanting to know of other Australians who had got access to it and hopefully to find out who prescribed it for them etc.

Of course I am interested in all the members experience with the drug and thank you so much for your information. Just wanted to clear up why I asked for Australian patients who had tried it.

I am looking forward to talking to all the patients on the forum no matter where they are from. We seem like a relatively small group even worldwide.

Kind Regards

Jodie

[blueskies]

Hi Jodie (and all other Aussies - I'm so happy to say hello),

Nope, you aren't alone in Australia. Although very little is known about POTS here since I was diagnosed 4 years ago there has definately been some improvement in that area. I don't get the look like I've got two heads when I tell a doctor I have POTS, now. When I was first diagnosed I'd have to explain it was a dysfunction of the ANS before they'd even begin to glean what I was talking about. Family, friends and others have no idea and no one (outside the medical field) that I've told I have it has ever heard of it.

I'm in Sydney and it was a vascular diagnostician who diagnosed me with POTS -- I call him my pots doc.

I believe there is a POTS specialist at Westmead Hospital in Sydney, Jodie, as well.

I did write to Dr Murray Esler some time back. He turned out to be a very nice bloke who took the time out to write me a very detailed letter back to me but he didn't offer anything I didn't already know or hadn't found out from my pots doc. At the time he was taking new patients and offered to see me but I was not up to flying to Melbourne (plus, let's face it, this illness gets expensive enough as it is and I just don't have the financial resources to follow every lead -- and certainly, not being able to work means plane fares and hotel stays are out of my price range). Plus, I must admit I get sick of seeing doctors. I have enough of them already.

Lucky you for living in Byron Bay. I first saw Bryon when I was 19 and a hippie. LOL. I'm now 54 and have been lucky enough to return a number of times over the years. It certainly has changed from a sleepy little fishing village but it's still incredibly beautiful. My sister lives in Mullumbimby.

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