GBS, CIDP, and Severe Seizures

    • Anonymous
      April 27, 2014 at 12:30 pm

      I do not mean to repost a topic but this is something I am having a hard time finding information on. A little over a week ago I had a series of seizures that forced the doctors to put me into a paralytic state for a almost four days. Alcohol was not a factor as there were no drugs in my system except those prescribed and thc (marijuana). I have had GBS for almost four years and was finally almost entirely dependent on a cane which is a long way from the wheelchair I started in. I do not remember roughly a day before the seizures hit and then small bits and pieces until I was brought out of my paralytic state. I had one seizure at home and my roommates heard me fall face first kissing the living room floor. I was taken to our small town ER where I am told I had at least four more seizures before being flown to a larger and more well equipped facility. In the helicopter I had another seizure. I have no recollection of any of this. Because of the severity of the seizures a paralytic state was induced and tests were ran. I was told I had an mri which showed nothing. In one of the scans it showed that my gall bladder was severely inflamed so they decided removal was the next step. I do have a tiny memory of about 10 minutes before the operation where I talked with the surgeon but I still did not even realize I had had any seizures yet. I simply thought my inflamed gall bladder caused a blackout like with my appendix a couple years earlier. After surgery they put me back in or maybe kept me in a paralytic state because they were afraid of what a seizure might do right after the operation. I had a reaction to the antibiotic which caused my liver and kidneys to began shutting down. Luckily it was caught early enough that no permanent damage was done at least that they could tell as of now. I saw 3 neurologists all of which were completely baffled. I saw a kidney specialist because of the antibiotic reaction and was taken off of most of my prescriptions. I had 3 or maybe it was 4 IV’s going in hopes of flushing out the kidneys and what not. I saw a few other doctors whom I’m not sure what they were doing exactly other than attempting to unravel this bizarre series of events. I am home now and doing pretty well. I am using my walker and not the cane but am moving alright considering it all. Anyone know of a connection between GBS, CIDP, or other similar diseases and seizures? I am baffled but hope I will receive some answers in about a week when I see my neurologist for a check up. He was completely last the last time we talked. Epilepsy was ruled out as a cause. I was told that as with most severe seizures there is a chemical released because the muscles are working so friggin hard. This chemical I am told causes the muscle fiber to break down destroying mass amounts of strength in a very short time. It reminded me of twisting bubble wrap. Basically the doctors said the last 7 or 8 months of work was destroyed by the seizures and this chemical release. Sorry for the lengthy double post. If anyone has ideas please let me know, and if you would just like me to keep you updated if I find answers somewhere let me know. Been s strange journey that I remember very little of. These neurological disease and/or conditions sure can be frustrating when it appears there are no answers in sight. I know I had now warning for gbs when it put me into the hospital for 6 weeks and took another 2 years for a diagnosis. Thanks you all who endured this long post. Best wishes for all.

    • June 3, 2014 at 3:18 am


    • December 12, 2014 at 1:56 pm

      My father 80 yr old was diagnosed with GBS August 2013 and was recently re-diagnosed with CIDP. Last Monday afternoon he began having a series of seizures lasting about a minute each and was rushed to the ER where he had a couple more before being given Ativan which slowed is pulmonary function to the point that he needed CPR. He was having difficulty breathing so was given a CPAP mask and the additional oxygen helped him stabilize. Now in the ICU daily EEG show he is still having seizure activity but CAT scan and MRI yielded nothing. They are fixing to do a Lumbar puncture to check for meningitis and encephalitis. My guess is that will also yield nothing. He is on anti-seizure medication and supplemental oxygen. In the days leading up to the seizure event, he had been suffering from sleep apnea which seemed to have been getting worse. His stoma had not closed in the 5 months since trach removal and the pulmonologist hypothesized that his body is still needing the opening.