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Please help. Begging and desperate for advice on autonomic dysreflexia.

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    Please help. Begging and desperate for advice on autonomic dysreflexia.

    I am a C3/C4 quadriplegic 11 years injury. For almost my entire injury I have had chronic bouts of autonomic dysreflexia on a daily basis. It has wrecked by being to the core. It is worst when I do my bowel program. The only way I can actually produce stool is to let the autonomic sensation build up and then finally release the stool. Lidocaine jelly blocks that sensation and I will have constipation. I am wondering after years and years of doing my bowel program like this has it completely changed my autonomic system for the worse

    The autonomic dysreflexia has gotten so bad now that I am completely incapacitated. I just feel my nervous system is completely destroyed and on a different path. I feel so many different sensations. My blood pressure and pulse usually remain normal during this constant feeling of doom. My catheter is draining normally, I am having regular bowel movements. I don't have any pressure sores? I can't figure it out. Also, strangely my body is gone completely numb. I usually feel pain but now my body is completely numb? Which is good but scary.

    I recently started taking a medicine called guanfacine. Has anyone taken it? Does it take a long time to build up? It seems hit or miss with helping.

    Please let me know if anyone out there is experiencing something similar and if you have had some success with medication or other routines. I probably cannot reply to a lot of questions but sincerely appreciate advice from nurse or doctor wise or forum members.

    Thanks,

    Corey

    #2
    Originally posted by This Sucks View Post
    I am a C3/C4 quadriplegic 11 years injury. For almost my entire injury I have had chronic bouts of autonomic dysreflexia on a daily basis. It has wrecked by being to the core. It is worst when I do my bowel program. The only way I can actually produce stool is to let the autonomic sensation build up and then finally release the stool. Lidocaine jelly blocks that sensation and I will have constipation. I am wondering after years and years of doing my bowel program like this has it completely changed my autonomic system for the worse

    The autonomic dysreflexia has gotten so bad now that I am completely incapacitated. I just feel my nervous system is completely destroyed and on a different path. I feel so many different sensations. My blood pressure and pulse usually remain normal during this constant feeling of doom. My catheter is draining normally, I am having regular bowel movements. I don't have any pressure sores? I can't figure it out. Also, strangely my body is gone completely numb. I usually feel pain but now my body is completely numb? Which is good but scary.

    I recently started taking a medicine called guanfacine. Has anyone taken it? Does it take a long time to build up? It seems hit or miss with helping.

    Please let me know if anyone out there is experiencing something similar and if you have had some success with medication or other routines. I probably cannot reply to a lot of questions but sincerely appreciate advice from nurse or doctor wise or forum members.

    Thanks,

    Corey
    By definition autonomic dysreflexia (AD) is the sudden onset of extremely high blood pressure. If your blood pressure is remaining normal, it is doubtful that you are experiencing AD. An episode of AD is caused by an irritant below the level of injury.

    What is your bowel routine? Do you use a Magic Bullet, digital stimulation, Enemeez...?

    Why are you taking guanfacine? Common side effects of Intuniv (guanfacine) include:
    • drowsiness,
    • dizziness,
    • dry mouth,
    • constipation,
    • tiredness,
    • nausea,
    • headache,
    • stomach pain,
    • weight gain
    • irritability
    Last edited by gjnl; 18 Nov 2018, 8:36 PM.

    Comment


      #3
      Originally posted by gjnl View Post
      By definition autonomic dysreflexia (AD) is the sudden onset of extremely high blood pressure. If your blood pressure is remaining normal, it is doubtful that you are experiencing AD. An episode of AD is caused by an irritant below the level of injury.

      What is your bowel routine? Do you use a Magic Bullet, digital stimulation, Enemeez...?

      Why are you taking guanfacine? Common side effects of Intuniv (guanfacine) include:
      • drowsiness,
      • dizziness,
      • dry mouth,
      • constipation,
      • tiredness,
      • nausea,
      • headache,
      • stomach pain,
      • weight gain
      • irritability
      my bowel program consists of one magicbullet and digital stimulation if I cannot go. I'm taking guanfacine because my nervous system is out of control? It feels like it's constantly raging and I am having sympoms of autonomic dysreflexia without actually having high blood pressure.

      Comment


        #4
        I wrote this on another thread today.

        Generally speaking a Magic Bullet bowel program should be:
        Remove all stool from the rectal vault. This is often easier to do (and more thorough) is you are lying on your side (on a disposable under pad).
        Insert a lubricated Magic Bullet high into the rectal vault.
        Transfer to a commode chair.
        Wait 15-20 minutes.
        Perform digital stimulation.
        Wait 15-20 minutes.
        Perform digital stimulation.
        Continue until you have had an adequate bowel program.

        It usually helps to do the bowel program within half an hour of eating a meal. Often a hot beverage helps to stimulate a bowel movement.

        Some people find they have to add a laxative like Miralax, to stimulate the bowel from the top down and use a Magic Bullet to stimulate from the bottom up.

        You body may be getting used to the Magic Bullets. Maybe you would benefit from changing up your bowel routine. Have you tried Enemeez?

        Presenting with the symptom of impending doom, quite possibly you are having symptoms of an anxiety disorder rather than autonomic dysreflexia (AD). Some of the symptoms can occur in both AD and anxiety disorders. If you are not having severe and extreme high blood pressure, it is unlikely you are experiencing AD. Bowel programs will generally result in AD symptoms, but those are usually resolved after the program is over.

        You may want to discuss other medications and techniques for dealing with anxiety with the prescriber of Intuniv (guanfacine). Some of the side effects of this drug may be exacerbating your symptoms.
        Last edited by gjnl; 18 Nov 2018, 8:35 PM.

        Comment


          #5
          Guanfacine is an antihypertensive- blood pressure pill that is supposed to prevent vasomotor response. I have never seen it used in hyupertension or AD. IS your blood pressure elvated at allt imes or just with the AD? Do you normally run a normal or low blood pressure? Have orthostatic hyupotension when sitting up? If so , this could drop your blood pressure very low. AD is from a specific cause and tht cause needs to be prevented or removed quickly- then no AD. If not, then a blood pressure med is taken- we use Nitropaste because the stimulus must be removed and whne it is the blood pressure will drop and th can go too low with the Nitropaste and it is easily washed off and not working after 5-10 minutes.
          If b/p continues up ward or person has a higher blood pressure (hypertension) we give Hydralazine). Unless there is new research out there recommending
          guanfacine- ask your doctor why he chose this med! Are you checking and keeping a record of your blood pressure throughout the day with different activities.
          CWO
          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

          Comment


            #6
            I recommend an MRI to test for syringomelia (spinal cyst).

            Comment


              #7
              Originally posted by Uncle Peter View Post
              I recommend an MRI to test for syringomelia (spinal cyst).
              Have you had similar problems from a cyst in the past?

              Comment


                #8
                I agree with Uncle Peter , you should get a MRI test for a Cyst on Spinal Cord , I have had two of them . It will cause A.D. for sure . Also I hope you would consider a Colostomy ! It is absolutely the best thing I have ever did since being Injured . Do away with bowel program .

                Comment


                  #9
                  A syrinx should be ruled out. If your blood pressure is not elevated, these episodes are not autonomic dysreflexia, but your reported loss of sensation is concerning, as this is often the first symptom of an enlarging syrinx. An MRI combined with a good physical exam by a physiatrist or neurologist is usually the best test for this.

                  (KLD)
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #10
                    I use to have AD during the BProgram, and something that has helped a lot is taking Linzess (1 or 2 pills the day of the program, 4 hours prior). This has helped with constipation which is most likely what's causing the AD. I make sure to drink plenty of fluids that day and I use the magic bullet suppository....hope it helps

                    Comment


                      #11
                      Originally posted by Lonestar View Post
                      I use to have AD during the BProgram, and something that has helped a lot is taking Linzess (1 or 2 pills the day of the program, 4 hours prior). This has helped with constipation which is most likely what's causing the AD. I make sure to drink plenty of fluids that day and I use the magic bullet suppository....hope it helps
                      Glad Linzess is working for you. It is a VERY expensive drug, a tier 5 on most Medicare drug plans. My physiatrist thought it might help me. I bought a one month's supply, and paid over $400 and took them for two week. I didn't find them helpful and certainly not at that price.

                      Comment


                        #12
                        Originally posted by This Sucks View Post
                        I am a C3/C4 quadriplegic 11 years injury. For almost my entire injury I have had chronic bouts of autonomic dysreflexia on a daily basis. It has wrecked by being to the core. It is worst when I do my bowel program. The only way I can actually produce stool is to let the autonomic sensation build up and then finally release the stool. Lidocaine jelly blocks that sensation and I will have constipation. I am wondering after years and years of doing my bowel program like this has it completely changed my autonomic system for the worse

                        The autonomic dysreflexia has gotten so bad now that I am completely incapacitated. I just feel my nervous system is completely destroyed and on a different path. I feel so many different sensations. My blood pressure and pulse usually remain normal during this constant feeling of doom. My catheter is draining normally, I am having regular bowel movements. I don't have any pressure sores? I can't figure it out. Also, strangely my body is gone completely numb. I usually feel pain but now my body is completely numb? Which is good but scary.

                        I recently started taking a medicine called guanfacine. Has anyone taken it? Does it take a long time to build up? It seems hit or miss with helping.

                        Please let me know if anyone out there is experiencing something similar and if you have had some success with medication or other routines. I probably cannot reply to a lot of questions but sincerely appreciate advice from nurse or doctor wise or forum members.

                        Thanks,

                        Corey
                        Have you tried Enemeez Plus? Enemeez Plus contains Benzocaine, assisting in the anesthetization of the rectum and lower bowel. This allows SCI, specifically cervical, with AD symptoms to not experience the AD feelings while doing BP. I've used Enemeez Plus 17+ years with no headaches and uncomfortable AD feelings. Go to their website and request for samples of Enemeez Plus.

                        Comment


                          #13
                          How often do you do your bowel program and is the stool, soft, formed, or does it come out in hard little balls? If your stool is loose enough to call it almost diarrhea, do you still get autonomic dysreflexia

                          If you having to strain so much to put yourself in A.D. you need to make the consistency your stool much softer, enabling it to pass easier so just the irritant of the bicuspid suppository will pass the stool through. This can be done by titrating MiraLAX until you get a regular routine established.

                          Have found the two major functions of a successful bowel program is (1) routine and (2) what you eat.

                          Comment


                            #14
                            Originally posted by SCI-Nurse View Post
                            A syrinx should be ruled out. If your blood pressure is not elevated, these episodes are not autonomic dysreflexia, but your reported loss of sensation is concerning, as this is often the first symptom of an enlarging syrinx. An MRI combined with a good physical exam by a physiatrist or neurologist is usually the best test for this.

                            (KLD)
                            If such AD-like symptoms and change in sensation are not an enlarging syrinx (mine are not, apparently - my latest neurologist visit last week and his measurement of the small syrinx in my messed-up cord showed that its dimensions were yet again unchanged), what else could be the cause. I get the sweats, sometimes with elevated BP, sometimes not, and I can't tell which episodees are which without a BP check. Along with the always increasing pain intensity, there has been some sensation change over time as well. The top of my back, which began with normal sensation after my C-5 injury, now has pain sensations (I can still feel pressure.) Other things change as well.
                            Alan

                            Proofread carefully to see if you any words out.

                            Comment


                              #15
                              u mean by AD that some muscles keep on contracting, right? if so, can u tell me what muscles? i mean is it a specific muscle or all muscles everywhere below level of injury?

                              Comment

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