[ Home | Contents | Search | Post | Reply | Next | Previous | Up ]
From: Becca
Cheryl,
My symptoms are as bad as yours are - YOU ARE NOT ALONE! Yes it is rare to have the symptoms this bad. Good to hear you have an understanding doctor!!! (Mine have discharged me as being a silly attention seeker).
Firstly, stop drinking lots of water. It depletes your body of salt (and that can be _very_ dangerous). Also you shouldn't increase your salt unless it has been proven it will help you and you have been told that your bloody pressure is low. I was told to do this, 'just in case' (even though my blood pressure is slightly high) and it made my blood pressure go *very* high and made my symptoms _much_ worse.
Of course it might help you, but it could also be making things worse so bear it in mind! Try it without and see how things are.
I cannot actually avert my symptoms as I get no warning but take comfort from the fact that they can and do improve.
The TILT test may help your symptoms to improve (apparently this can and does happen, it is even a suggested treatment by some specialists), _BUT_ do be aware it can also worsen them, you need to make sure that the table is put right as _soon_ as you have any symptoms. Prior to my TILT test I wasn't getting attacks anywhere near as much as I do now (I was able to do sport/walk several miles without collapse). It has been suggested to me by an indepenant consultant (as well as other people on this forum) that it happened because they did not righten the table quickly, so do mention that, you don't want the situation to get worse. I have also ended up with Chronic Fatgue Syndrome from the TILT test, apparently this is rare but does happen as well.
Guess I am just 'rare' :)
I have been given betablockers that help but not much, I can walk a bit further and can be in an upright position for more than 10 minutes (can do 15 min now!!!) without collapsing. Because of the effects of the test I am now unable to drive/swim do any sport at all (including walking up more than two flights of stairs), walk anywhere on my own (e.g. appointments in case something happens), cross over a main road (because I need to stand for several minutes and can't sit down in the middle of the road), or do heavy food shopping.
:|
I can work, only because I figured out myself what was causing my symptoms, and also lied about the frequency of my attacks. I will add I am not proud of this, but the only alternative I had was to be homeless and I know there is noway I could survive on the street with this condition. So I sacrificed my morals (and ended up with sleepless nights until a friend pointed out it was better I lied than ended up on a park bech - fair point!)
Because my attacks are related to me being upright (regardless of whether I am standing still or moving around), exercising and I get symtoms when sitting for a time, if I avoid these things and carry a portable stool and force myself to sit down every hundred yards or so (despite feeling and looking an idiot!) the frequency of my attacks is less, I do still get them for no apparant reason, things like being tired/not eating regularly can make me worse.
You might want to try writing down _every_ time you feel an attack coming on/have one. This really helped me to find out what was triggering mine.
Anway enough rambling! Good luck with the TILT test, let us know how it goes!
BTW if you want further info about vasovagal attacks you could try http://www.stars.org.uk if you send a message to Trudie (there is a link to do this) then she will send you information about becomming a member and answer any questions you might have. She is very knowledgable about the condition and an all round nice person :)
All the best, Becca.