what should i do

[LISAANNE1983]

hi guys,
           im having a really bad day today i been dizzy all day and at times i been unable to stand up without fear of passing out. i was in the garden at teatime and i had to sit on the grass at kids picnic table with head on there chair as i felt i was away to pass out. i still feel really bad feel hot hands are all pins and needles. feel dizzy and having difficulty concentrating to write this. i checked my bp manually and it 120/70 so that ok . i do not know whether i should  go to see out hors gp or not . im being investigated for synope but should ijust be ignoring tese symptoms this is the worst i felt in ages. i took asthma medications to see if that helped as feel breathless but still am and i also feel like chest got old lady sitting on it and also tickling sensation. any thoughts be appreciated. thanks lisa . x

[MandyMouse]

Hi everyone. I'm new here and I have an autonomic dysfunction as well. Mine has been really bad as of lately and I''ve been experiencing alot of headaches and muscle pain. Does anyone else have pain? I also have Lupus and scoliosis but I'm trying to find out what is causing all the pain. My autonomic dysfunction began after I had brain surgery to remove a tumor on my brain stem in 2001. I'd appreciate any help. I'm just sop tired all the time and can hardly get around any more. Thanks!

[halbashes]

That's why I was thinking it might be better to only have a PICC line during the summer.  It would be kind of an irritation throughout the year I would think.  As it is though, I need to go to the ER every so often for IVs...

Also if a nurse could just come to my house and start one every once and a while, maybe I wouldn't need a PICC at all.  Just it would eliminate the need of going to the ER.

I guess I'm going to try to bring this up with my doctor this week, but I'm hoping he won't look at me as if I've grown an additional head.

[LISAANNE1983]

i gheard of others that do this and it works for them.  although dr trips could get a bit tedious too.

[halbashes]

I've been giving serious consideration to a PICC for the past couple of months now.  Do you think it would be possible to only have a PICC during the summer months?  What about a call in nurse for weekly IVs, or as-needed IVs?  I'd appreciate any thoughts, experiences, or recommendations.

[molly0]

My daughter has a PICC also for hydration therapy.  I just drink a lot of Gatorade.  I make Gatorade popsicles too, which help me to get more fluid.

[mandymoo]

I really couldn't drink enough either, so a couple of years ago I started using hydration therapy through a central line.  It's basically an IV that I leave in my arm, and get swapped out every couple months in a hospital.  It's called a PICC line, I think someone else on this forum said they used one too.  In the morning I connect the tube in my arm to a bag of fluid, and I'm finished in about a half hour.  I take more throughout the day if I'm dehydrated, or during menstruation.

[LISAANNE1983]

thankyou for your replys. i feeling a little better i see dr on tuesday as i asked for appt so hopefully i can get some help. im just thinking that we are having really warm weather here and that making me worse . i definetly feel that my problem is increasing in it severity but hopefully the dr can help with this . my main problem is i cant drink the 8 glass a day thing i can normally only drink 1 to 2 glasses a day as it makes me feel sick and i get reflux. and as i dont feel thirsty i can often go all day without drinking then realise i not had anything which i know is daft as it makes worse. how do you all manage to drink enough

[halbashes]

I'm sorry to hear that you aren't feeling well.  If you are feelings worse than normal, then I would absolutely recommend that you see your doctor.

Are you perhaps feeling breathless because you aren't breathing enough?  Breathing is an autonomic process as well, one that doctors sometimes ignore in Dysautonomia.

I hope you feel better soon!

[mandymoo]

If your feeling much different or worse than usual, then I'd definitely say it's time to see a doctor.  I hope you feel better.  Maybe your blood pressure is higher only while you are testing it?  Maybe your heart rate is low?