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Thread: How common is Dysreflexia ?

  1. #1
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    How common is Dysreflexia ?

    My husband and I are new at this (50 days post , C6/7 incomplete) , and AD is one of the more scary things that I've been reading about. Especially since we are in BFE, and an ambulance takes , I shit you not, 1 HOUR to arrive at our house. We have had to call 911 twice here for other reasons, and its not pretty. The volunteer guys who show up first aren't even EMT's or authorized to carry Nitro. So anyway, Scary. How often does this really happen? I understand that I need to be aware of it and educated, but should I be patiently expecting it or is it not very common? Also, am I going to have a problem getting the doc to prescribe nitro so that i can have it on hand?

  2. #2
    Nitro should be a last resort. Most common cause of AD is extended bladder so first thing is to empty leg bag or cath. If that doesn't work check for wrinkles and other discomforts. You keep him upright as much as possible. The vast majority of times AD is quickly resolved without medication. In 26 years I have not needed meds, nitro will not stop AD, it just mask the symptoms.

  3. #3
    80% of those at risk for AD have their first episode within the first year post injury. Most episodes can be prevented by proper bladder and bowel management, and preventing pressure ulcers and trauma below the level of injury. If not, then episodes should be identified as early as possible and measures taken to correct the cause, or to get to the ER as quickly as possible.

    You should not leave rehab until there is a plan in place for home management of AD, including having supplies on hand as follows:

    • Blood pressure cuff (digital is ideal)
    • Intermittent catheters (if using this bladder management)
    • Lidocaine jelly 2% urethral applicators (Urojets)
    • Extra indwelling catheters (if used) and the knowledge of how to change
    • Normal saline irrigation solution and sterile irrigation tray (if using an indwelling catheter)
    • Medication such as nifedipine, which is fast acting and easy to take (chew and swallow)
    • Handouts and wallet cards to provide to emergency responders, ER staff, and hospital staff about AD.

    You should also have someone to call for advice in an emergency. Our wallet cards instruct our outpatients and providers to call our 24/7 number at the SCI unit nurses station. The RNs are prepared to talk you through management, and can also put providers in touch with our SCI physicians if needed.

    We do not use nitroglycerine for men with AD, since so many of them are also taking Viagra. You cannot use nitroglycerine within 24 hours before or after taking Viagra (or Levitra or Cialis). We do sometimes provide it for women, but our first-line medication to buy time until you can get to an ER if needed is nifedipine.

    (KLD)

  4. #4
    It also occurs commonly with bowel issues and of course any irritation below the level of injury can cause it. So using lidocaine or Benzocaine with dig stim or Eneemeez plus- has benzocaine in it-helps relive this and of course keeping the bowels moving with stool softeners diet, etc.... Once the source of "irritation" is removed- the blood pressure will go back to normal.
    CWO

  5. #5
    I strongly urge you to both keep a copy of this AD wallet card on you and carry multiple copies of the clinical guidelines for patients presenting with AD with you to present to ER nurses (especially triage nurses) and doctors, EMTs and first responders, etc. in the event you need to go to the ER for AD you cannot resolve on your own or in the event you develop AD while visiting an ED for some other reason. I always have several copies of it in a folder for important medical documents that's kept in the backpack that hangs off the handles of my chair 24/7.

    Having this info at hand in the event of an AD emergency can be life saving. Very, very few ER staff have even heard of AD, let alone realize it's a life-threatening condition. Those that have tend to be found in large, urban facilities. Those of us that live in E/W/N/S Bumphucque typically are the experts and must educate the healthcare professionals who staff our local EDs as we advocate for ourselves and/or our family/friends with AD.

    Case in point. After living with significant SC damage from C2-T4 for 33 years, I was on the way to the ED to investigate recurring abdominal pain. Between the pain caused by twisting my ankle when I transferred into the car and from what would be diagnosed a few hours later as a severely diseased gallbladder, I developed my first case of AD. Fortunately, I knew immediately what was wrong with me, what needed to be done, and was carrying my wallet card from the Reeve Foundation with me.

    I presented the wallet card with my ID and insurance card to the triage nurse and told her I was experiencing an attack of a life threatening condition called autonomic dysreflexia and needed to be seen immediately. But even after scanning the wallet card and noting that my blood pressure was 219/170, she didn't even look at me as she dismissed me back to the waiting room with an irritated wave of her hand while snarking at a colleague "Here's another one who looked up her symptoms on WebMD and is convinced she's dying." Even the RN charged with my care once I finally managed to be enough of a PITA to be taken to a treatment room dismissed me as a drug seeker until she did her own research on AD and understood that I didn't care if she gave me pain meds or blood pressure meds as long as I got something that would return my BP to its usual 112/70.
    It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

    ~Julius Caesar


  6. #6
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    Great, speak of the devil ! He has now just had 3 episodes of AD in the last 24 hours - each time it was the bladder "overfull" , but ... What the heck? He was fine before - they were pulling 8 or 900 at a time and now all of a sudden..?? I know its not good to let the bladder get that full. Sometimes they get 200, sometimes 900, you just never know. They seem to be thinking ANOTHER uti (just cultured tonight) ..He has just finished antibiotics for one last week - not the mention the C-DIFF , so how in the world we are supposed to fight UTI's with C-diff is beyond me! RGGH> this is an uphill battle from HELL!

  7. #7
    Rule- keep volumes less than 400 mls. 500 mls max. Is he on any bladder relaxing meds???anticholinergic? Urodynamics testing done?
    CWO

  8. #8
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    I think not for the bladder meds, and the others don't sound familiar either. The doc ordered 600 max .. PLEEAASE don't let this be another UTI !!

  9. #9
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    Quote Originally Posted by JacksonsGirl View Post
    I think not for the bladder meds, and the others don't sound familiar either. The doc ordered 600 max .. PLEEAASE don't let this be another UTI !!
    Our son feels slightly dysreflexic when his bladder is prematurely full. It has become very helpful in keeping his bladder from overextending. He feels better within seconds of draining his bladder.

  10. #10
    Senior Member alan's Avatar
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    Dumb question - How do you print the card page onto a card to fit in a wallet?
    Alan

    Proofread carefully to see if you any words out.

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