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Thread: Autonomic Dysreflexia

  1. #1

    Autonomic Dysreflexia

    So, I've been wondering how many people have to deal with this in addtion to everything else. At first, I didn't know what was wrong with me, I figured I had a brain tumor. The headaches were just continuous and pounding, debiliatating. Then once I found out they were from my injury, and what to do when I get them, they weren't as frequent.

    BUT, no one told me that my blood pressure went sky high along with everything else that goes with Autonomic Dysreflexia. I mean, lucky I didn't have a stroke. ALTHOUGH, I can't do steps without really, really concentrating and MAKING my leg go. Like, I can't talk and walk ...because my one leg will just "stay" there. Then I fall...uggh. A bit I avoid steps at all costs.

    I have no idea why no one told me about my blood goes from 90/60 to 199/120...that's a significant increase and a rather important detail to leave out, you think?

    Does anyone else have this and is there anything else I should know about it? I did "google" it...that scared the "crap" out of me (not really, unfortunately ) tee hee

    Well, thanks for listening. Have a great day...

  2. #2
    Senior Member keps's Avatar
    Join Date
    May 2005
    United Kingdom
    I have a T4 injury, and also get ad. It wasn't really mentioned in rehab, which bothers me. I had my first attack 4 weeks after leaving rehab, and if I hadn't done my homework - making an effort to read stuff that was lying about (and plenty of people didn't do this) in rehab, I wouldn't really have known why my head felt like it was going to come off.

    Wow, that's a serious rise in bp you get. I hope you have some medication you have at home for any possible emergencies?
    If you don't have anything at home, with rises in blood pressure you get, you definitely need to speak to your doctor about this.

    I have some gtn spray, but I've always been able to resolve the cause of ad attacks quickly, so I haven't used it.
    But knowing it's there in case I cannot resolve the cause of an attack of ad is a huge comfort.

    I think it's best to try not to worry to much about the potential dangers of ad. If you keep on top of your personal care, and are vigilant about your skin, and general health, you should be ok.

    I could spend my life being frightened of "what ifs", but I refuse to live like that.

  3. #3
    That's pretty significant even if they thought at your level of injury you would probably not have to worry about autonomic dyslexia. I used to get it pretty often and it almost always was related to either bowel, bladder, or overeating. I haven't had serious problems with it lately, but I do carry around a portable blood pressure cuff and Nitro paste just in case.

    My first major experience with it was when I had an overnight pass while in rehab. My girlfriend at the time took me home and as soon as we got there, the headache, red blotches, sweating, etc. began. I was rushed to the ER and the last blood pressure I remembered before having a seizure and blacking out was 280/145. The problem.. bladder stones. It can be pretty scary.

  4. #4
    bbs: Do you have a spinal cord injury and if so, where did you do rehab? I'm just curious because from the sounds of some of your posts, it doesn't sound like they provided you a lot of information. AD is potentially fatal.

  5. #5
    bbs, you NEED to find out what causes AD & ultimately be able to deal with it when you feel it coming. If I get it, 98%+ of the time it's related to my bladder.

    AD is part of the whole SCI game, but if you have a good sense of your body & how it reacts to whatever you're doing, it doesn't have to be a huge problem. Yes, AD can be serious, but fortunately it's managable most of the time.

  6. #6


    It's usually my bladder/colon..but some other things (intimate)...cause it also.
    I was in rehab, insurance stopped paying, and I can't get any better so, it's ok...
    I was just shocked that NO ONE told me about the blood pressure thing..
    Maybe as to not scare me, 'cause I was getting the headache all the time at that point. Now, I'm much better..I do recognize when I NEED to's just that sometimes, ummm...i can't get it to work ..
    I did get the Asta's like a "guide"...that usually works, but when it doesn't and I am struggling, that's when I have the problem. That and when my stupid colon doesn't "respond".

    Anyways, I just wanted to see if anyone out there had this, too. I suppose there are a lot, it does go with SCI..but one of my docs said it was "rare"..??
    Thanks again, for all your support AND understanding. I really do appreciate it.

  7. #7


    oh, sorry if I had put this in the wrong section...I'm still navigating around here and don't really know what goes where...


  8. #8
    Senior Member BeeBee's Avatar
    Join Date
    Dec 2004
    Washington, D.C.
    bbs, if you realize that your AD is caused (primarily) by bowel and cath issues, may I suggest you take a look at these proceedures. I know you've said you have problems with this, SO...... perhaps look into some alternative that could make your life a lot easier. Take a look at this thread for some reasonable alternatives:
    You didn't say whether you are male or female, and this will affect some of your choices, but my point is to let you know there are options available (if you were unaware).
    Also, take a look thru this forum (Care, especially) for bowel program techinques that can speed things along or make them easier to deal with. There are too many threads to point to a specific one, but you may find some real help, with a little research.
    Don't be afrain to ask specific, graphic, questions. You'll see that most of us have "been there, done that", either as the SCI or Caregiver, and we don't gross out or offend easily, tho we may have a sick since of humor.
    AD is very serious, as well as uncomfortable, and finding ways to eliminate it may be worth some soul and internet searching.
    Good Luck.

  9. #9
    I would strongly encourage you to learn more about AD. You will know more about it that most health care professionals you meet, so you need to become the expert on symptoms, causes, and treatment. Untreated it can be life-threatening, as can what is causing it.

    Start with this booklet from the Consortium for Spinal Cord Medicine (PDF file):

    Autonomic Dysreflexia: What you should know

    I would also recommend downloading and printing the professional guidelines (on the same page) and giving copies to your providers and keeping a copy with you to give to ER personnel if necessary.


  10. #10
    I was having AD symptoms about 6 months post. Everytime we would do my bowel program I'd have severe headaches. After a few times I had to figure out why. I came to my own conclusion that it had to be related to a spastic bladder. I wasn't on any bladder meds so I scheduled an appt. with my urologist. Sure enough, a few days later and my next bowel programs were AD free.

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