Anyone Dealing With Dysautonomia In Ireland?

[Freaked]

I'm from Dublin and I've been very sick now for four months, and currently have no formal diagnosis and no one managing my condition, except I'm in a programme to help me deal with the psychological stress of it cos the hospital didn't know what else to do with me. My cardiologist the other day shocked me with his knowledge of the existence of pots; he acted like he'd never heard of it when I mentioned it before. He's sent me out a prescription for compression stockings, but other than that has discharged me, not considering it a truly cardiological issue.

It seems like the only place that deals with autonomic dysfunction in this country is the fits, faints and falls unit in James's. I have an appointment with them for the end of July, which I was lucky to get, but I'm worried that even they won't deal much with pots. Has anyone found any cardiologists, neurologists or specialists of any kind who've helped them with dysautonomia? I'm so debilitated and depressed at this point that the end of July seems a very long time, and that unit is so high in demand I can't see myself getting frequent follow-ups there.

[tachyfor50years]

Dear Freaked,

I understand your frustration and I know very well your pain, I hope you find some answers.

I live in the US and having hard time to find a good Dr. that knows or at least believes in Dysautonomia.

There are many excellent people on this forum, I hope that they will be a great help for you.

Take care

[E246]

I have similar experiences in the uk.

I get passed around between falls and cardio - the bottom line is there are no definite answers and the medical profession dont deal with that weel.

There is an array of medication that may or may not help and you need to work your way through that and see if any of it helps.

Good luck.

[andybonse]

I'm in the UK and found a cardio who actually knows about POTS and was amazingly at my hospital. He has given me Bisoprolol 1.25mg to try. I am trying to keep fluids to 3l of powerade and salt. I am going to start exercising slowly. I have it more mild than a lot of people which im thankful for but its still hard, i've lost my job,flat,partner etc. so stress plays a big factor in my opinion.

I think we need doctors to find out our exact variable conditions:

Do we have blood pooling? Yes? Why? - Vessles do not constrict properly in...legs? Midodrine / vasoconstrictor or compression stockings - thats one problem helped hopefully

Heart rate increase - Why? Due to the blood pooling? Yes? Great, we can now use beta blockers combined with Midodrine which should help a lot.

If we focused on each symptom and the cause and get a definitive answer of each one, a medicine tailored plan could be almost perfected with significant improvements in people.

I plan on studying medicine and then cardiology maybe neurovascular science, then specialise into POTS. I can then treat people properly as I'd know what its like to have it and various things to check to tailor a plan.

Would make sense, rather than try this try that, test for blood pooling, vessle, nerves etc and get it right.

[tachyfor50years]

Have you seen this?

http://irishdysautonomia.wordpress.com/

Hope this will help you.

[s-pot]

HI Freaked!

I totally understand your frustration!

Im here in Ireland... went around alot of different avenues before I was finally diagnosed!

Im attending Dr RA Kenny in Falls and BlackOut unit in St James....its the best and ONLY place to go here! She is absolutely lovely and very attentive. The team know their Autonomic stuff!

I was diagnosed with POTS in A&E of my local hospital by a locum consultant who had seen it before, this was a long time before I attended St James. Getting the diagnosis was great but for the year after that I didnt get much support or info on treatment until I went to St James.

One thing I will say is that they don't get hung up on the 'labels', i.e POTS is a syndrome, collection of symptoms. They do proper TTT and lots of other stuff and treat based on what they see. I was confused at first as to what my 'diagnosis' was. Really all the 'labels' are interchangeable.... POTS, Neurocardiogenic Syncope, Vasovagal Dysfunction ive heard them all ..... but really dont get hung up on the labels. Whatever the tests show they will treat....its all autonomic dysfunction!

In relation to follow up....I attended privately at first. Had a full assessment, TTT and was started on Florinef (was on midodrine before and didnt suit). They brought me back 2mths later and as I had responded so well to the Flo they were happy to discharge back to GP, with lots of self help info! and to reattend if necessary. January all went downhill again nd i requested to be referred back up....had a public appointment within about 8 wks, another review and TTT done 2 weeks after that. I'm headed for a review again tomorrow (12wks since last).

It is a very busy unit but I have found them to be quite good and tbh prob the best you will get in relation to this stuff here in Ireland. Most doctors have not heard of POTS and the ones that have, have very limited knowledge.

If you have any questions feel free to ask I will try to help as best as I can! Bin on the rd with this here for a 3 yrs now....its a toughie!!