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Shivers and Epilepsy

Hello Everyone,

        I was diagnosed with epilepsy 6 yrs ago. My neurologist suspects it is Juvenile Myoclonic Epilepsy. In the last couple of years, I have had these weird I would describe them as "shivers". First of all so far I have only had tonic clonic seizures and they have all been in my sleep. I am taking 1,000 mg of Epival and 900 mg of Trileptal daily. But for the last 2 yrs or so I have been getting these shivers that start in my lower back and then make their way up to my head then my head and shoulders shake pretty hard. Is this because of my epilepsy or is it just something completely unrelated? Please let me know if anyone else has experienced these "shivers".


                                                             Andrew T



Hi! My son is 15 months old and he has been diagnoised with epilepsy but not the type yet.  He does has "shivers" just like you do.  He is not on any type of meds.  His happen quite frequently.

Our "child" is 4 1/2 years old.  She had her first seizure at 10 months and experienced many "shudders" or "shivers" as you call them until approximately one year ago.  She now takes keppra and tripleptal and the shudders have disappeared over the last year.

I was actually just going to post on this topic!


I have never been diagnosed with epilepsy per se, but I have had seizures due to an infection I once had in my brain- it was some form of meningitis...anyhow I am also diabetic so initially when I get any sort of shakes my first thought is blood sugar. Oddly enough I havent had a full blown seizure for years so I stopped taking my Dilantin about a year and a half ago. My doc said that as long as I had gone a few years withouth seizures and I had no relapses of the infection that I should be ok. 

 So a year and change later, I start getting these shivers, just as you described normal blood sugar readings so I know it isn't that...odd thing is they always seem to hit around 3 AM although recently they have occured more often.  What also struck me as being strange was that if I would simply use the bathroom, it would taper off over a few minutes.

It is like shivering from cold but when I put on a shirt then I get hot soon after doing so. Long story short, I am trying not to stay up as late and am restarting my meds to see if they help. Last night it went on and off for about a half hour. 

Also, I am completely lucid and coherent throughout the entire thing. It is difficult for me to speak because my jaw sort of clenches but I can do it if I try hard. Lots of deja vu during the day too. Maybe it's not a seizure?


The "shiver" could be an extention of the epilepsy.  It could be a side effect of the medication.  The question is have you discussed this with the doc.  it has been going on for a couple of years.  talk to the doc, it may need to be evaluated by her/him.  hope it helps.    rikk

Hi- My 8 year old daughter was just diagnosed with Epilepsy.  She started having early morning 'shivers' that would go on for 15 - 20 minutes - in and out of 'shivers'.  She can communicate although with difficulty while they are happening.  We have been turning on the TV when they happen and this 'distraction' makes them stop.  Her pediatrician wants to medicate her, so does the family doctor, but after reading about all of the possible side effects, I wonder if I should??  Her seizures happen 1 - 4 times per week, in the early morning only and go away easily with distraction.  I just picked up this huge bottle of meds from the pharmacist and I am feeling more sick about shoving poison down her throat than I am about her level of seizures.  I really don't know what to do....

I've been getting these shiver things since i was in 6th grade, but when i get them, I don't lose conciousness, but my mind sort of skips as if it were a scratched record for a second or two at the most.  I'm thinking that they're some sort of petite mal seizure, but I'm not positive.  I'll have more info on this in a couple weeks after a 5 day EEG.

Hi - I'm a 47 year old lwoman and just started having the shivers about a year ago. My first Grand Mal seizure was when I was 19 - grew out of it and was fine until I had a C-section with the birth of my daughter at 33 years old and had a seizure a day later in the hospital. Since then I have been on medication. I recently went to the neurologist because it seemed like things were getting worse - I always thought I was having petit mal seizures but he said he thought it was actually Simple seizures. The shivers started out of the blue - always at night as well and they are uncontrollable - for me they last about 3 to 5 minutes. I thought perhaps they had something to do with menopause, but after reading this I realize that it is probably related to my epilepsy. I am so thankful for these discussion forums because sometimes I think Im going crazy!

I get them, too, sometimes, but usually at the time I'm having a seizure or just after. I have some sort of seizure disorder in which I sometimes have partial sz and sometimes what seems like almost a tonic-clonic, but I retain consciousness - like a jacksonian thing. It was suggested by a friend (in his last year of med. school) that the shuddering was me trying to control the uncontrollable movements. For a half second (the length of each individual shudder, although I can have several in a row, separated by 5-10 sec), my body/mind is trying to control the seizures. it cannot control them, but it "interferes" with the movements instigated by the seizure itself. I don't know if this is really the case or not, but sounds plausible.

Hi! My daughter started having the "shivers" after she had her first grand mal at 13, it seemed to be part of her builld up to a grand mal. When she was diagnosed and was put on meds they ceased and she hasn't hd any in about a year and a half. She has juvenile myoclonic epilepsy so it seems to go with different seizure types. I hope everything works out well for you and you find an answer. Good luck!

Hi my grandson is 11 yrs and has had epilepsy since birth. His seizures are gran mal but just within the past year he started experiencing these shivers after he falls asleep.  It happens about once every 2 months.  He is almost in a sleepwalking mode after he has the shivering and is very agitated and scared.  This last episode lasted about 10-15 mins. It was very scary. He went to his neurologist the last time it happened but the Dr. only increased his meds.  He feels that it is because he is going thru a growth spurt.  Is the shivering and nightmareish behavior the actual seizure because it is not like what we have seen throughout his childhood?

Is it that part of your body shakes ? I wasn't controlled on one med and my legs would start shaking and trembling like I was cold . I have JME . Sometimes my whole body would jerk a little it was not noticed by others but I could feel it it was like a small jolt then stop like somebody jumped up an scared me .

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