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

[gjnl]

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.

[rolliniv]

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.

[Cris]

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.

[alan]

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.

[moor]

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?

[SCI-Nurse]

alan - your symptoms are overwhelming - the noxious stimulation has not specifically identified but if your blood pressure if variable you may want to consider a Holter monitor to look at your heart rate and blood pressure variances over a 24 hour period

get a thorough exam head to toe

good luck

pbr