tonimackerz

7 hours ago, Jojo79 said:

I live in the UK yogini. I found the nhs to be an absolute disgrace with this condition and ehlers danlos syndrome which I also have.

I had to use my savings to go private. I've seen the best in the field in London. Just trying out a few drugs now. Fludro first but that hasn't helped so need to see what's next. I resent the fact I had to use what little money I had but had no choice. I was hospitalised with awful problems and had no idea what was going on and they referred me to mental health. 

There is an autonomic unit in London. If you are anywhere near there you could asked to be referred. I live in Wiltshire and my gp surgery had to put the request to the ccg to approve the referral to the autonomic unit. Absolute disgrace. I never heard a thing. 

Now I've had the testing done I have a piece of paper that clearly outlines exactly how bad my issues are with bp control, I have named diagnosis of POTS, syncope and autonomic dysfunction. No one can fob me off again with this. No it won't cure me but if I need to go into hospital this paperwork all comes with me. That means something to me following prior experiwnces. The paperwork also went along with a formal complaint to my local hospital!

Jojo79, that's really awful, I kind of understand what you mean and how awful the NHS is with this condition. Half the doctors I've seen don't actually think I have this condition as they don't believe it's an actual condition. I feel like I'm making things up half the time but I **** well know I'm not. 

Could I ask, did you just pay for the initial consultation and then went via NHS or did you end up having to pay for it all privately? It's a disgrace that we have to pay out when we have a system in place that's supposed to help us which is paid for in our taxes. But without diagnosis, life is miserable. Would be appreciative if you could keep me posted on how your treatment goes. Best of luck

Hi all, thanks for your replies, wasn't aware I had any response until now. I appreciate your words of wisdom, unfortunately where I live (England) there aren't a lot of specialists and is not a widely recognised condition. 

On 23/10/2017 at 12:54 PM, yogini said:

There are some meds which help multiple symptoms.  For example when I was on Paxil all my symptoms improved.  I suggested things to my doctor the way vepa did and found multiple doctors who were receptive to that approach.

Yogini, you were given Paxil, did you just ask your doctor about it or did they suggest it?

I am 21 and was diagnosed with having Dysautonomia last year after suffering with symptoms for 6/7 years without any help. I have tried Amitriptyline, as suggested by the doctor, but it doesn't seem to have done much to help me. They cannot give me a more specialised diagnosis of the Dysautonomias, just that I have one. My symptoms include: insomnia, gastric issues (nausea, bloating, reflux), breathlessness on exercise, headaches. It's affecting my everyday life and am finding it very difficult to cope with this.

I am really at a loss of what to do, nobody seems to be able to help. Has anyone else been struggling with treatment/proper diagnosis or have any recommendations/ideas of what I can do to help get this under control?