Can GBS’ers get Autonomic Dysreflexia

    • Anonymous
      April 19, 2007 at 12:17 pm

      I have read some about Autonomic Dysreflexia and so far all I have seen is mention of patients with Spinal cord injuries above a certain level having this. I am wondering if it is also possible in people with GBS. Mainly the reason I am asking is I am wondering if this is what I get at times…

      I am unable to have a BM withou the use of a suppository and I notice that whenever I do have a BM I start to sweat quite a bit, my heart starts pounding in my chest, I feel flush, I get pressure in my head, and the strange on I have seen no mention of anywhere is my eyese start to water. Anyone else get this, and is this a sign of AD and can we even get AD?

    • Anonymous
      April 19, 2007 at 1:04 pm

      I am so sorry that you are having to expereince what is considered a very rare reflex, this is the nerve that controls your bowels bladder and sexual function. You may feel a sense of loss of consciousness this is because of a drop in blood preasure, it may also include symtoms of a chill like feeling inside your body this is followed with a relaxation of the nerve reflex increasing the blood flow hence increasing your heart rate and bp warming up your body as blood flows as before. This is is definitely an autonomic dysfunction and I have been expereincing this undiagnosed for over 2 years. The things that have helped is that I make sure to eat yogurt with every meal, I have become a vegetarian and try and eat foods that dont tax my digestive system. I have an acute form “bells palsy of the gi tract” this is a unique manifestation of Lyme’s disease of the gut. Despite hevy doses of ivy antibiotics and oral antibiotics this is yet my most perpelxing symptom and i continuously expereince these strange symptoms. Please make sure you take citrucel with each meal, a cup of plain yogurt or the new activa stuff by dannon try and avoid sugars, white flour, starch, processed foods and talk to your doctor for a prescription for lactulose or miralax to keep your bowels moving. You may expereince these symptoms even when emptying your bladder as the autonomic expression of CIDP causes a neurogenic bladder as well as bowels. Good luck and hang in there.

    • Anonymous
      April 19, 2007 at 1:17 pm

      Thanks for the info. I was taking Citrucel frequently but the I got a prescription for Miralax so I switched to that, but unfortunatly that didnt agree with me and it caused me to get upset stomachs and not knowing for certain when you have to go… well lets just say that didnt work out real well. I see that there is an over the counter Miralax now so maybe it is more mild? If so that might be something I should check into them maybe, not sure though if it is different. I avoid sugars as I have hypoglycemia and if I eat sugars, my blood sugar goes up but then my pancreas over-reacts and I get a very low drop in my sugars. I do enjoy yogurt and have heard about it helping the digestive tract and I was eating that as well… nothing seemed to help with the BM problem so after 8 months of frustration, accidents and not going for a couple weeks at a time I finally broke down to the suppositories and those were trial and error too to find one that worked. I tried every type of laxative, stool softner, digestive tract cleaner, teas, etc and nothing seemed to work. But since I enjoy yogurt anyways I think I will get back to that, even though my bowels dont work right it doesnt hurt to make sure the rest of the tract is happy.

      I wasnt sure if AD was possible in GBS as it is only talked about it for SCI patients but I guess SCI is much more common than GBS so we need to sometimes find our own information and not just read as we see it 🙂 Its good though to try and identify what is really going on in case there are additional health concerns as is the case with AD. My next doc appt is at the end of may with a new physio who is also in a wheelchair so this will be something interesting to bring up to him when I go in to see if there is anything else I should be doing or watching out for.

      Thanks for this info, I appreciate the feedback.

    • Anonymous
      April 19, 2007 at 1:59 pm

      biofeedback to retrain your bowels as well as enema therapy to retrain your bowels may be the way to go with your physiotherapist/neurologist.

      Try lactulose it is what I take as a laxative and works great. I feel your pain because I spend about 4 to 6 hours of my day in the bathroom waiting on a bm or from horrible spasms or from the fear of having an accident. I often did not leave my home for days on end becuase of this fear.

      I still have not been given any form of treatment for my CIDP and if anything my symptoms get worse and at times they get better. Please stick with the yogurt and try and get some got form of pre and probiotic supplements as well as acidophilous supplements. I am glad you are on a hypoglycemic diet as am I though I am not hypoglycemic but sugar acts as a transport across the blood brain barrier increasing inflammation around the tissues of your nerves.

      My earliest attack of constipation I started with citrucel, then moved to milk of magnesia then magnesium citrate and then finally i was giving myself enemas 3 times a day this was in july and august of 2005. Since then I have lost all sensation in my bowels and only know I need to go a the last minute or if I am experiencing pain or spasms. It was only in January i found out that I have CIDP and learnt of the vegas nerve reflex. I tried using teas from the midwest college of accupuncture and they worked really well but it took up a lot of time 2 hours every 2 days to brew up the fresh herbs which included amongst other herbs dry turmeric. the midwest college is an authentic accupuncture center and the herbs are guaranteed to be free of lead and arsenic which can attribute to heavy metal toxicity which is really awful for GBS/CIDP.

      Try eating a more liquid easy to digest diet I am not sure if there is someone helping you with your meals but if you would like some really healthy recipies I could have my mom email some to you as it is thanks to her care that i am doing relatively better than I was In January.

      I do know the best testing for the autonomic nerves is at Mayo though some medical facilities do have some of the advanced machines. I do not have any insurance and my medicaid medicare are pending and getting any form of treatment here has been a huge issue for me. I am still trying to be officially diagnosed and get my IVIG approved. IVIG infusions should help with your autonomic issues as well. IVIG is very effective in helping with GI complications.

      Please let me know if I can be of any help in directing you towards information that may be helpful to you.

    • Anonymous
      April 19, 2007 at 2:16 pm

      I have actually talked to my neuro about the bowel problems and he told me the bottom line is that my nerves arent working to send the signals down there. The muscles just plain arent working is what he said. I did discuss the options available and after trying everything else I finally came down to suppositories. I can completely understand about spending hours in the bathroom and being afraid the leave the house. I know that if I waited for too many days without having one I would suddenly get an upset stomach and it was bad news. So I had to plan my laxative dosages around my schedule and not go anywhere the day I was expecting a BM, it was horrible. Nothing would come out unless I had an upset stomach and it was horrible. Now that I finally broke down and started using suppositories I tried a couple different ones and the ones I have now I go into the bathroom for 20 minutes and I’m done. Its great to now have plan days around this and worry about accidents anymore.

      So for now my neuro tells me that its not a matter of training my bowels its a matter of them not getting the signals, but you never know some day that might change.

    • Anonymous
      April 19, 2007 at 2:31 pm

      on what basis did he say the nerve is dead? it may not be receiving signals and working appropriately but I know for a fact there are neuro biofeedback centers for spinal cord inhuries and retraining the bowel muscles as well as specialized enema therapy for the same. You need to contact a good colorectal surgeon who may be able to guide you to this type of rehab they deal with it all the time. Neurologist may or may not be well informed on this topic once again you need a colorectal surgeon

    • Anonymous
      April 19, 2007 at 3:57 pm

      No they never said the nerve is dead, they said that the nerve is not working and not getting the signal of what is going on down there. I have no muscles to push. When I try to go to the bathroom I try to push (and have been doing so for 9 months now) but its just a matter of waiting for things to happen. I dont have a sense of when I need to go, nor can I do anything about it even if I did know. I also have additional nerve damage (not related to GSB but related to a procedure in the hosptial) that was determined by MRIs.

      Since I use a wheelchair to get around and use a 4-point harness to keep upright in vehicles I have friends who are paras/quads also. And my internal plumbing is alot like theirs with the exception that I dont need to cath. But just like a para/quad, I have no sense of when I need to have a BM or do I have the muscles allowing me to do anything about it.

    • Anonymous
      April 19, 2007 at 4:49 pm

      Doby, I have had that problem since my 1st paralysis event aug05. i just make sure i eat healthy foods-something i never did before on a regular schedule and i have only had a handful of problems since. of course after each of my events i have to start over from scratch.:rolleyes: i can tell when i have to go only by the amount of pain i have in my back-strange i know, but it is alittle different then my everyday back pain and different then my kidney stone pain also. plus i use mental imaging, kind of like a biofeedback technique, to go every 5-6 hours or timed voids. my nerves aren’t totally dead but do only respond as a 1 on the tone scale.:(

    • Anonymous
      April 23, 2007 at 12:12 pm


      There is a test your neurologist can do called ANSAR testing in his office. It tests the autonomic nervous system – I had it done 2 weeks ago. They hook you up to a heart monitor and b/p cuff and a computer that reads all this. One of the things they make you do is the vasalva maneuver (bear down and hold breath) – it took about 15 minutes. I had it done b/c I get lightheaded sometimes, and they cant figure out why.

    • Anonymous
      April 23, 2007 at 12:45 pm

      Great I will mention this next time I go in and see if I should get tested. My next appointment is May 31st so I got another month till then.