Thursday, March 24, 2011

Autonomic Dysreflexia, or Not Autonomic Dysreflexia?

I have a C4/C5 complete injury, since June 2005. I suffer from autonomic dysreflexia symptoms A LOT. I deal with cold sweats, and chills on a daily basis. For the past two years, I've been suffering from this mystery chest pain/pressure. My doctors have done numerous tests, always ruling stuff out, but never coming up with any concrete answers besides, "it's probably neurological." No DUH?! Ya think? They've taken blood, X-rays, CAT scans, an EKG, ultrasounds and sonograms. My heart and lungs results always show as fine. I do have a history of DVTs (deep vien thrombosis-aka blood clots) in my left leg, which is common, and we (my doctors & I) decided against keeping me on blood thinners, since I have a filter, already in place to prevent clots from reaching my heart, or brain. All of my major organs, including my gallbladder have showed up as norma. With the exception of anemia, and the obvious, paralysis, every tests my doctors have given me come back "norma." So, I can't help but wonder if it's all just "normal," for someone in my condition.

The thing is, in order for these symptoms to be classified as autonomic dysreflexia, I thought there had to be an accompanying rise in blood pressure. Most of the time, my blood pressure & heart rate are fine. Yet I feel like I have the flu, almost constantly. I realize that some of my symptoms mimic having an UTI, but come on, can I really ALWAYS have a UTI? Since I have a supra pubic catheter, there's always a certain amount of bacteria in my urine. It seems almost impossible, to ever know for sure, what's wrong. I feel like UTI ends up being the scapegoat diagnosis, for all my problems, and the doctors way of getting around saying, "I have no clue." That's not to say my doctors are "bad," or don't know what they're doing. I've been to specialists, and the thing is, they can only do so much. They have to base their diagnosis, on my descriptions, which are of secondary, seemingly random symptoms. I'm sure it's as equally as frustrating for them, when they can't provide me any relief, or figure out the source of my symptoms.

I try to avoid antibiotics. They reek havoc on my bowel program, not to mention, constantly taking them, just breeds stronger bugs. My doctor & I have come up with a few possible reasons for all of my "sick" symptoms, that include: hemorrhoids, stomach ulcers, and gas. The symptoms vary, slightly, from day, to day, but I suffer from at least a couple, EVERY DAY. The chest pressure builds up randomly (I haven't been able to correlate a direct link to food, or time of day) and subsides a LITTLE when I lay down, versus sitting up. The fact that the pressure is usually worse when I'm sitting up, it makes sense that it could be hemorrhoids, since that's when there's more weight being distributed to my bottom. The other batch of symptoms I get include: cold sweats, chills, phantom sensations in my legs and feet, this odd, gross tingly sensation, all throughout my body, fevers and aches. I usually chalk them up to AD, but like I said earlier, my blood pressure is often low, or normal, while I'm experiencing these symptoms. My question is, are these symptoms really AD, or just freak neurological impulses, thanks to my screwed up spinal cord? I've experienced classic AD symptoms, like profuse sweating, goosebumps, and killer headaches, when my catheter has been blocked. In these instances, my blood pressure definitely did spike, and decrease, once the obstruction was cleared. I think the gas theory makes sense, since it's pain I can't feel, but I've tried products like Gas-Ex & Beano, and never get any relief. My diet is full of veggies, and fiber. It doesn't vary that much. I take the same dose of BP related meds, every day, and have BP every other day, so it's not like constipation is the cause. I do notice the cold sweats and goosebumps during BP, but figure that makes sense, since the stimulation is directly agitating the hemorrhoids. It's a vicious cycle, with the only solution, being a colostomy bag. If I've said it once, I've said it a thousand times, I will absolutely not consider getting a colostomy.

I take Pepcid for my stomach, so that should theoretically help with all the medication I take. If it is always gas that's the culprit, what can I do, besides what I'm already doing? I use topical treatments, and suppositories for the hemorrhoids, but considering I have to have a BP, I'm wondering if there's any other remedies, I haven't tried. I know from reading things online, that hemorrhoids, are quite common, among spinal cord injury patients. I'm wondering if anyone else, in my similar situation experiencing similar symptoms, due to hemorrhoids.

Other than the hemorrhoids, I have noticed a correlation to my period and feeling sick. When I was first injured, I didn't know I had my period, unless my caregivers told me. These past couple of years, I consistently run fevers, have cold sweats and aches, around the week of my period. I'm wondering if this is "normal" among women, with high level spinal cord injuries. I'm also curious, if perhaps I'm experiencing stomach cramping, that I can't feel, and that my brain is interpreting it as these AD like symptoms, even though my blood pressure isn't effected. I had a recent GYN exam, and everything was fine, but it HAS to be more than coincidence that my flu like symptoms increase like clock work, every month. My aunt suggested that I go on one of the birth control pills, that limits the number of periods you have, to a few times a year. The only problem with that idea, is that I'm worried about the possible weight gain, that taking birth control pills tend to cause. I watch my weight carefully. Considering I have little, to no functional movement, that also means having no means of exercising, to shed extra pounds. I already count calories, so I'm very hesitant to risk taking something, that may very well, make matters worse, or not help at all. I don't know many women with high level spinal cord injuries, but am hoping that someone might read this, and be able share their insight, about how their menstrual cycle has changed, or caused AD, since their injury. I never had much complaints, with cramping, or PMS, when I was on my feet. Now, I can't even feel my period. I just know I feel worse than usual, when I have it. I don't know if it's just a change based on aging, or something related to my injury. It's so hard finding concrete solutions, and/or answers.

The fevers and chills are the worst, of all the symptoms. The fevers I get usually start around dinner time, and last well into the early morning (2-4am). I've read that the onset of fevers, later in the day is common. I'm wondering why that is, and if it's just my body's way of expressing exhaustion. I almost always know when I have a fever, because I start to feel extreme fatigue. As soon as I start feeling tired, I usually ask someone to take my temp and I'm almost always right. The fevers are low grade, usually ranging between 99-100.5 degrees Fahrenheit. The weirdest (and most frustrating) aspect of my near daily fevers, is that they don't subside easily. I almost always take Tylenol, or ibuprofen, and lately, not only do the fevers NOT drop, they've actually INCREASED. I'm not sure how else to combat the problem, besides taking pills, and having someone place cool rags on my forehead. It's exasperating, having fevers so often, and having no obvious cause, or solution. Almost every night I start off uncomfortable, with just a sheet covering me, my fan on, and I toss and turn my head, because the discomfort prevents me from falling asleep. Some time during the night, once I've finally fallen asleep, my body cools down. By the morning, I've usually switched over to freezing, and have to have a heavy comforter on me. It's a horribly, redundant, annoying pattern. I know people with high level spinal cord injuries are extra sensitive to ambient temperature. I'm wondering if other people with high level injuries suffer from fevers, as often as I do, and if so, what theories they might have regarding causes/solutions.

Whether or not my chronic "illness" is caused by AD, or not, I'm just trying to see if anyone else out there is experiencing similar symptoms, and if so, if they've found anything for relief, that I haven't already tried. I'm constantly battling depression, and anxiety over all the loss and trauma that my paralysis has caused. Although I'm seeing a therapist, and take several medications, to help cope with the psychological impact that paralysis has had on me, it's extraordinarily hard finding joy, when I'm constantly feeling physically sick. If I could alleviate some of the physical discomfort, it would certainly have a positive effect on my mood, and make it easier to find reasons to move forward. Honestly, I feel as though (based on experience in dealing with doctors, and knowing my body) most of the discomfort is rooted in my spinal cord injury's, overall impact on my body, and the natural progression of time, given the insane amount of change and stress, my body has physically gone through.

Bowel program alone, seems to cause as much discomfort, as it causes. Unfortunately, it''s something I HAVE to have, in order to keep me alive. Obviously (besides the birth control option), there's nothing I can do about having a period. So really, I'm just trying to pin point what is causing what, and find out if there are other people out there, experiencing similar symptoms. From a medical perspective, I'm curious to know if fluctuating blood pressure, is the only qualifying characteristic to tell for sure if a symptom is AD related, or not. I often feel like my injury has condemned me to a life a chronic illness, that is just part of living with paralysis. Living this way, is certainly not normal. I have to rely on bp, medications and being dependent on others, just to stay alive. Those three things are a given, based on my condition. Having no cure in sight, makes the thought of having to live this way forever, seem hopeless. Every year, I seem to get physically worse, and therefore feel emotionally more desperate to escape. I want to know if all that I go through, is REALLY just TYPICAL, given my injury, or if it's just me. Any suggestions, shared experiences, feedback and/or ideas would be greatly appreciated!


  1. Found you by way of looking up wonky AD symptoms, and the symptoms you describe are astonishingly like mine: the hot, the cold, the electric shock fallout feeling wigglies, all of it, with the addition of a nose that's never not stuffed -- I've had a craniectomy,too, and you'd think a hole in the head would help with congestion, but it doesn't. Not at all. Not even a little bit.

    I know that my periods are a likely culprit with the lower grade stuff, but I, like you, have been reluctant to go on the pill because of weight gain. There is a chance, though, that a sympathetic doctor might help you out. When I told my gynecologist about how cramps brought on big AD symptoms (a few nasty, sweaty syncopes where blood pressure leapt from 90 to above 200 in seconds) but mostly AD lite (pit stains to my waist, creepy crawlies), she suggested an IUD. I've given birth, which is why I suppose my doc recommended it (having had at least one child seems to be a precondition for prescription). I'm guessing by your profile that you haven't given birth, but I don't see why you couldn't lobby a doc to make an exception for you.

    Word has it that the first six months make matters worse initially (cramping, bleeding, no reason or rhyme, which means more creepy crawlies at first), but an IUD can also stop periods altogether for as long as FIVE YEARS, which is awesome.

    I haven't gotten around to getting one just yet, because the blood pressure meds I'm taking keep the more outrageous symptoms at bay, but one more hyperhydrosis ragfest and I'm going to get plugged, promise.

    I don't know whether this is helpful or not, but I hope that knowing it's a possibility holds some hope for you.

  2. Thank you for sharing your thoughts. I've never had the pleasure of having a child. I was injured when I was 24. I wasn't married.
    I did get some feedback from the "women only" forum, on the Care Cure spinal cord injury forums, that might be helpful to you as well. One woman that experienced similar issues got a procedure done called "ablation." She said she had it done about 10 years post injury, and that it helped reduce her AD symptoms. I googled it, and from what I read, it's mostly done for women who are heavy bleeders. I'm not.
    Another woman brought up a good point, that birth control pills are known to increase blood clots, which is already something women with paralysis need to watch out for. A couple other ladies weighed in, saying they felt the same crappy, flu like symptoms, and have been unsuccessful finding any relief. Motrin & dark chocolate were two suggestions to lessen symptoms.

  3. Another thing, my body never got acclimated to it, and the side effects (fatigue, vomiting)were as much trouble as the initial problem, but when I was on the duragesic patch, always a very low dose, 12 or 25 mcg, the AD lite disappeared. It was an incidental finding -- it was first prescribed to tide me over pain wise while awaiting a shunt revision -- but I asked to stay on it post-op since my AD lite disappeared while I was on it. The opioid seemed to tamp down autonomic noise and pain I wasn't registering consciously. Maybe it's something your body will tolerate, and be of more use to you than to me.

    Something else to think about.

    Gotta love the internet.

  4. Hello, At the age of 13 I was paralyzed C5-6 from a diving accident now at the age 52 I finished HS,graduated college,worked for an insurance comany and have been married for 22 years no children and now work with my husband running rental properties. For 39 yrs I used a foley catheter in Oct I had a supra put in because of frequent utis and now after all these years I have AD and more lower adominal pain that I know what to do with. My new urologist suggest a urostomy. My AD smyptom is a spike in blood pressure by 8:00 pm Im up to 180/104. Im too at a loss. But as far as periods, I am an incomplete quad so I have Feelings so I felt my ten day periods until one day during apap smear in 1990 I suggested a hysterectomy because tried of periods the nurse suggested depo shot 3 mos of no period then 1 period of 2 to 3 days then another shot. No mood swings,no cramps or backaches,no increase in appetit wonderful then in 2001 no periods at all. Maybe it might help. Also has anyone gone from supra to an urostomy with success and have less pain?