shaking tremors possibly rikers

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gidget1

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This is my very first post i'm still new to this all don't even know where to begin. But i need some advise, help and answers on behalf of my brother who has ALS (bulbar). I'm still learning myself about all this and the different lingo (talk) that comes with his disease. And his condition is worsening by the day its hard to get answers or questions to him these last few days he's been really drugged up. I try to go to his doctor appointments but i find myself confused about what they aretalking about. I myself am not sure what to ask. So bare with me, please. just want to know what is going on with my brother for the last few days he's been waking up experiencing some tremors like if he was cold teeth chatter his body stiffen and it will last anywhere from 5 mins to 30 mins has been the longest. took him into the doctors and they said it could be rikers but not sure, they ran test for infections they could not find any infections anywhere no temperture but he does get slightly clammy. I just want to know if others have experience this. It started off just in the morning but it has been more frequent through out the day maybe 2-4 time during the day as well. What can i do while he is going through this to help him feel more comfortable.
 

brooksea

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and they said it could be rikers

I wish I could help, but I don't know what "rikers" is. Do you mean rigors?

Rigor is a shaking occurring during a high fever. It occurs because cytokines and prostaglandins are released as part of an immune response and increase the set point for body temperature in the hypothalamus.

It is sometimes considered a synonym for "chills".[1]
from Wikipedia

Sounds like he has an infection and fever is causing his chills. Could be pneumonia, especially since he is bulbar and could have aspirated. I know you said the doc said no infection, but... Do you have a thermometer that will read temp from the forehead? If not, get one. It has been a great thing for us. You move it across from temple to temple. Very easy and very accurate.

Did they xray his lungs?
 

Miss

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My husband experienced this for a few weeks two months ago. Like your brother, he had no infection or fever. We never found out what it was, but it stopped as suddenly as it started. Sorry I cannot give you more information.
 

sadiemae

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A gal on FB has mentioned something called "autonomic storms" It has to do with change in blood pressure among other things. People with head injurys and neuron diseases get them. I will post a link if I can find it.
 

Miss

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Thanks Lori! I would love to have some idea what happened in case it happens again.
 

sadiemae

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When it happens, check the blood pressure. She says to give a dose of Metoprolol (which is a blood pressure med) I will PM Wright and have him chime in. I do not really understand it.
 

gidget1

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Thanks sadiemae it sounds like you may have given me some answer 16 years ago my brother was in an auto accident that left him with some head trauma as well as his left side paralyzed. Doc could not find no infection he hasn't had fevers however sometime his blood pressure changes. xrays of his chest urine blood were all done nothing abnormal was found Doc doesn't know what it is. And yes i could have the term wrong and or spelling it could be rigors i was given three different ways of saying that however none of the systems he is having was leading to that. Since then within the last 24 hours my brothers condition has worsen he is now signed up for hospice has a nurse 24 hr bed side and meds are now being pumped into him every 30 mins his condition doesn't look good at this point and i was wondering if somebody else was experiencing any of these symptom, what was the next stage to follow just a heads up for me. Sorry to say but i think the time short.
 

dian_na

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Hi Sadie msg'd me regarding this thread. Whats happening is autonomic storms. If you search google you will find numerous things mostly related to head injuries. It has to do with injury to the brain stem, with head injuries it is sudden onset however indeseases such as MS, ALS it is ongoing continued assult tot he brain stem which is the base of the spinal cord. Things that are normally automatic to us become irratic, being cold when temps are normal, hypertensive, low or high spiked pulse, sweats, rigor, nearly anything that is abnormal can be associated to autonoumic storms. If his teeth are chattering he prolly senses cold, cover him up with a blanket for a while until the storm passes then remove the blanket. If the shattering stops you fixed it. My mom will turn beat red with blotches all over her limbs and chest not her abdomin, her pulse with sore to 150 and often her blood preassure will as well. Metotoporal helps my mom's it brings the pulse down where its to be as well as the blood preasure with in mins after getting it she is back to normal.
this site is one man's story in caring for his daughter who had a brain injury give it time to load, its tons of stuff on one page. But skip thru the his experiences and see how it relates to your PALS, I assure many not all but most you will be able to relate to autonoumic storms and your PALS. At least it gives an answer as to what is going on. Somethng to k now, these storms do eventually pass, however in each storm the symptoms are real and serious. My mom went untreated for them for 3 years until I read of autpsies on ALS patients who experienced ALS autnomic storms.
 
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epkennedy

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My PALS has had such 'storms' since shortly after diagnoses. They are most severe in the morning - his entire body stiffens firsts and then the tremors. This is the first I have heard it has anything to do w/ blood pressure. Hmmm, interesting. Some days he will tremor throughout the day whereas other days it's only when he first gets into power chair.
 

dian_na

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they won't have all these symptoms, but many at diffrent times, and some PALS will never experience them. When I found out about them I was simply relieved to know what the heck it was.
 
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