Need advice

[Edithbo]

Hi i was just diagnosed with dysautonomia 6 months ago I have been passing out since I was 13 it dosent happen all the time, maybe ones every 4 years. now that I know what i have I worry and have anxiety all the time.has anyone gone to that? and how is it that I can make it better?what do you guys recommend?

[Boombiddy]

Hiya, yes I have been through the anxiety and panic and I know it isn't nice!

But to give some ideas as to how to make it feel better, we would need to know what type of Dysautonomia yours is.

(For example, I know what to do about mine (POTS, specifically the type you get with Ehlers Danlos and Hypermobility Syndromes), but if you had some other type it might not work for you).

So, what I suggest is, ring STARS (Syncope Trust, deal with all sorts of dysautonomias), they are very helpful and knowledgeable and will point you in the right direction.

If you have the kind of POTS I have, I could give you some pointers as I have had the full works, tests, very specific diagnosis, and been trained what to do for POTS by my neuro team.

But if not, my advice could harm and not help.

So - first stop is ring STARS, 01789 867503 or 01789 867516, think the second number is Jenny, she was very helpful to me.

Don't let panic panic you.

And, for now, make sure you are staying very well hydrated. 2.5 litres a day.

I suspect you will feel a lot better quickly even with just this (as a lot of people with POTS feel panic when their blood pressure goes low, and drinking more water fools the body that the pressure is higher, and it stops the body panicking.

I have to take salt too. If a little extra salt helps, good. If not, and especially if you have hyperadrenergic POTS don't try the salt.

And keep yourself cool. We're having a hot day and that is probably making you feel a lot worse. And means you need even more water!

Meanwhile ***it could just be your body is panicking if dehydrated, hot, or standing long***It feels like anxiety but may be just physical***

I often just remind myself it's just my body panicking and get something to drink, get my feet up.

I know how awful POTS feels, and how extreme and terrifying the panic can be.

Be encouraged, I have had scary symptoms most of my life and it hasn't killed me. Just do the stuff you can, and ***ring STARS***

Best wishes from Boombiddy.