Jump to content

labas_2u@shaw.ca

Members
 View Profile  See their activity

  • Posts

    161

  • Joined

  • Last visited

 Content Type 

Posts posted by labas_2u@shaw.ca

  1. Update From Lindajoy

    in Dysautonomia Discussion

    Posted

    It sounds so much like autoimmune..... :lol:

    Has she been tested for 'hereditary angioneurotic edema'? I know someone who is being tested for this because of similar symptoms........

    Not a doctor by any means but just grabbing at straws and trying to add some ideas that might open up some other avenues....

    Please tell her we are thinking about her and sending her best wishes....

    Maggs

  2. Vent/update

    in Dysautonomia Discussion

    Posted

    Hi Amber :)

    If the 'shocking' your doctor is referring to is actually is being cardioverted, I was was cardioverted twice(at one time). My heart was racing upwards of 240 bpm. The medications given would not bring it down so I was cardioverted once (which didn't work) and then again (which did). I don't remember much about it.....just remember waking up in the Cardiac Unit :angry:

    My understanding at the time was that the heart cannot continue to beat effectively at those rates.....and if medications don't work then they use cardioversion. Mind you, this was quite a few years ago....

    I would ask for a better explanation for why and how the procedure will be done.. :lol:

    Good luck and keep us posted

    Maggs

  3. Riding Horses?

    in Dysautonomia Discussion

    Posted

    Hi Madeline :ph34r:

    I had my own horse for years (riding English - my horse was a hunter-jumper) It was at one time a very big part of my life.

    I would caution you to be very careful also. You have to be extremely alert riding a horse at all times as you are in full control and must think for both of you. (brain fog or being on medications would be hazardous) In English you 'post' when you trot which would be the equivalent of getting up and down out of a seat using only the inner thigh/knee over and over again. I know that today I could not do it. :unsure: Your body is never relaxed when working a horse (except maybe pleasure riding??)

    I don't know the level of functioning you have with this disorder but unless you only mildly affected by your symptoms, I would not recommend it.

    But.....under very controlled conditions who knows???

    Just be very careful and I hope you have a great time tomorrow!!! :blink::):)

    Maggs

  10. Ohio

    in Dysautonomia Discussion

    Posted

    Not from Ohio, but lived most of my live on the Great Lakes....St. Mary's River (which joins the Great Lakes) is a 5 minute walk from my front door. My parents had a cottage on Lake Superior where myself and my family spent all summer. Been to Cedar Point.....

    ????

    Maggs

  24. Today I Cried For The First Time In 35 Years .

    in Dysautonomia Discussion

    Posted

    Oh Willows!!

    I wish I could help.

    I can tell you a bit about the petechiae and how it applies to me. I don't know if it is applicable to you or not but maybe something in it might help......

    I have an undiagnosed autoimmune disorder (which probably caused my dysautonomia issues).

    Many years ago, before they knew it was autoimmune, I had ITP (idiopathic thrombocytopenia purpurea) which is a drop in platelets. One of the symptoms is petechiae. (platelets help clot the blood to stop bleeding) I saw a top hematologist in Toronto who could not figure out my platelet problem. (Lupus-an autoimmune disease was also ruled out at this time). Even though my platelets came back up to within normal levels, I still continued to have outbreaks in petechiae (along with bleeding problems) B)

    About three years ago, after a bout of rectal bleeding (and my platelets remaining in the normal range) I was tested for Von Willebrand's disease. Now, this is a hereditary disease and I have no family history of this but rarely it can be 'aquired'. You can 'google' it under 'Aquired Von Willebrand' This has to do with clotting factors or lack of. I have too much (again very rare) of factor X1, which disrupts the clotting cascade. (Hemaphelia is lack of factor V111) My doctors believe my problem is caused by the autoimmune disorder which is disrupting the clotting factors. Hence the petechiae.

    Most days, I have no problems with it. But if my autoimmune problem is active (and I can tell by the petechiae) I have to be more careful - not a good day to get run over by a bus...... :( Cuts bleed for longer periods of time and even having blood drawn can leave a bit of a mess if constant pressure is not applied.

    Willows, I have no idea if this applies to you or not, but, if your doctor is stumped and looking for suggestions.....he/she might want to look into the autoimmune angle and test your clotting factors. Oh, and just to make it more interesting, clotting factors can be in the normal range but not be working properly (I think this applies to factor V111 - but I am not sure.)

    The only medication I know of that helps is prednisone for when the autoimmune issue is active. I haven't taken any in years though because I don't like the side effects. The petechiae and bleeding is just something I put up with. Pain in the behind but so is everything else about this disorder.......

    Maybe worth a shot to ask your doctor about?????

    Good luck and please keep us updated

    Maggs

  25. Side Effects Of Adrenaline..

    in Dysautonomia Discussion

    Posted

    I too feel that way, also about the beta-blocker.

    My mouth is soooo dry, I drink tons of water which does not help at all. Then I am running to the bathroom steady! I am shaky and on edge. If the phone rings next to me, I just about jump out of my skin! B)

    Taking the beta-blocker does not seem to help that much because my body just seems to 'fight' it, although taking it on a regular basis does decrease the amount of the attacks. My resting heart rate was recorded at 120 during one of these episodes and it was a sinus tachy.

    I generally just wait it out.....not fun..........

    Sorry, not much help but I just wanted you to know you are not alone :(

    Maggs

×
×
  • Create New...