Samantha91

Hey

has anyone got a ICD implanted for their fast heart rate? If so does it help and what condition do you have?

thanks. 

Yes I do get PATS when I travel away but coming up with the money in the first place is hard for me cause of money issues.

I’m only 26, and I’m only new to all of this so it’s quite confusing. 

Doctor did say mine is nerve related. 

Living in a rural town is horrible for knowloadge of umcommon conditions as I’m finding here in Port lincoln south Australia. I can’t even get a MRI here have to drive 8 hours! I have to do Skype appointments with my cardiologist so maybe in the future you can Skype?

For my diagnose I had a tilt test without blood taken and also heart monitor to have heart rate readings. 

No real positive tests came back besides my heart rate. Which makes me wonder if I really have it! I have autonomic dysfunction and IST. 

Hope you find a good doctor to help you out!!  

IHey

Im in Australia and I see a great cardiologist in Adelaide Dennis Lau. He has helped me lots and is willing to help me in anyway! 

Its hard for me as I live in Port Lincoln so I don’t have any local doctors knowing about the condition! 

I’ve gone up to 190bpm lasted for 20 minutes but currently taking coralan and it has helped it but still spikes up now and then! It’s the worst feeling. 

I had the exact symptoms as you did and I was diagnosed last year took me 7 years to get an answer as I live in Australia and everyone thought i was just depressed cause everything came back normal until I found a great cardio. I have autonomic dysfunction and IST. 

Hope you have some answers soon, if you need someone to talk to I’m here

I wish it was the same for me. I had a glass of wine and within the hour I had the worst headache ever!! Alcohol just does not agree with me! Anyone else get the same feeling??

I have tried coralan and I’m back on it again now along with Midodrine. And I’m having no success. 

I’ve only got a fast heartbeat at all times when standing. 

How come you still have to take medication when you have a pacemaker?

Hello,

im just wondering if anyone has tried all the heart medications and none has worked for you?

if so, did you have to have a pacemaker?

no medications are helping me and feel like I have no more options left??

Thankyou that is really helpful. 

I just started Midodrine this week and I feel 10x worse! Only on 5mg half a tablet 3 times a day. 

it makes me feel sooo tired and nausea. 

I have a great docotor in Adelaide but unfortunately I live 8 hours away from there and doctors where I live have no idea about the condition. So it’s extremley hard. 

Ive been sick for 6 years and I’m only getting worse as time goes on

I always had headaches in the same place behind my left eye. 

I recently just got my daith pierced (part of the inner ear) which is a pressure point. Got it done 3 weeks now and I have not had one headache!!! Getting it done hurt a lot but sooooo worth it!

Hello

ive been diagnosed with autonomic dysfunction in August this year but have been struggling for 6 years and finally have the answer. I’m 26 years old living near Adelaide in south Australia  

Im finding it so hard to understand and getting frustrated that no one understands. 

Was just wondering if there was anyone in Australia who has the same condition and was wondering how they got help and what helped them. 

Would love to get some insite how other people deal with it. 

Im feeling like this condition is taking over my life and I can’t do anything anymore. 

Hope there are other people near me that can tell me some info

I have been considering pot aswell but I was looking more into the oil instead of smoking. 

I’m also from Australia and it’s still illegal here. 

Ive just been approved for midodrine through the special access scheme and was wondering do you know if you can get pot through the special access scheme? 

I’m still on new to this as I only got diagnosed in August and no medication is working for me and I don’t know what to do anymore and I thought maybe pot might help??

Hello, 

ive just been diagnosed with autonomic dysfunction. 

Ive been sick for the last 6 years and have only been getting worse. 

My symptoms are very fast heart rate when standing, chronic fatigue, ibs, muscle pain, heat intolerance, can't exercise what so ever, headaches, hot flushes and the list goes on! 

Ive had many of tests but my new cardiologist said I have this. 

I have read about it and it doesn't sound that great and just wondering what other people are experiencing and how they are going about it to get help and feel better!

i have to drink 3 liters of water a day and wear compression stockings. I'm on cymbalta, inderal, floernif and omeprezole. 

Would love to hear other people's stories