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A MyEpilepsyTeam Member asked a question 💭
Houston, TX

I’m just going about my day and it just happens randomly. No its not a seizure but im wondering if it could be cause im epileptic and would want to know if anyone else gets it

August 17 (edited)
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Answer Summary

Members responded to a question about random chills and shaking by sharing their own experiences with epilepsy-related tremors and temperature... Read more

Members responded to a question about random chills and shaking by sharing their own experiences with epilepsy-related tremors and temperature sensitivity. Several members described needing to carefully regulate body temperature to avoid seizures, with one member introducing a rare condition called Cold Induced Reflex Epilepsy (CIRE), where cold exposure directly triggers shaking episodes. A recurring theme was managing triggers like barometric pressure changes and cold temperatures through practical steps like warm clothing, room-temperature drinks, medication like Clobazam, and leaning on loved ones for support.

A MyEpilepsyTeam Member

after a seizure im always freezing and with the chills.

August 18
A MyEpilepsyTeam Member

Good advice Irene .. those all be auras .. they be seizures on their own .. yet often a big seizure be following .. in my case often it be CIRE .. which be focal aware .. so I be clearly remembering every chill and shaky moment of it ., and you be right Rhonda .. we be soaked to the skin and I be shaking so bad I having trouble walking .. as I have tough time holding onto my crutches .. and Jen doing her best to balance me and keep me going .. thankfully our son Joe hear thbe thunder and see rain coming .. so he run out to meet us with blankets and towels .. anf a hoodie for me .. then he and Jen each take on arm and just about carry me rest of way .. we were so glad to see him coming to meet us .. I too be given Clobazam .. when in hospital they use it when I be in for collapsed lung .. so I not be getting seizure whilst lung being treated so it can heal ..we send you both hugs and prayers from William and Jen 💜💙🤗🤗🕊🕊

August 20
A MyEpilepsyTeam Member

Hallo Noel .. this be William .. I be having a rare type of seizure that sound like what you be having .. it be called CIRE .. cold induced reflex epilepsy.. when exposed to cold .. such as a drop in outside temp as before a storm .. or walking into an air conditioned store on a hot day .. or being in shower when warm water run out .. or drinking cold liquids ., even eating ice cream .. any of these cause a seizure in me where I suffer severe shakes and chills called rigours .. which will not stop until my wife Jen warm me .. as I cannot be bringing my body temp up myself .. as the part of my brain that control body temp be damaged at my premature birth ., and I be plagued with these CIRE seizures since ., my condition be rare .. many doctors not aware of it ., my neurologist HAD heard of it .. and he find this be what causing this in me .. as you say .. it be random.. sometimes just brief .. ss an ice cream freeze many of us get .. to a prolonged shaking and chills that set in when the barometric pressure drops before a storm or heavy rain begins! My case be rare .. yet worth looking into .. sometime it go away by itself .. like with ice cteam freeze many of us get ., other times it be way more serious .. it be focal aware .. as I can feel it coming on .. and my wife Jen can too .. and she now put hoodie or jacket on me before going into AC .. and be sure my drinks be room temp ., this be treated with avoidance and taking precautions .. as there be no meds to treat it ., just be how I be .. as it be rare and no test for it except that the cold bring it on .. it be more of a part of my life than a condition I suppose .. we saw your question and wanted you to know about CIRE .. take care Noel .. hugs and prayers from William and Jen 💜💙🤗🕊

August 18 (edited)
A MyEpilepsyTeam Member

To meet this sounds like trimmers I used to have

August 17
A MyEpilepsyTeam Member

I was born with low blood pressure and that’s why I’m always cold according to the doctors and we’re supposed to have 10 days of rain, so the barometric pressure is all over the place. I was outside for maybe 2 minutes and I can feel my insides vibrating. So I’ve got my dog laying across my legs warming them up and I put on a lounger type of sweatshirt just to get warm b4 I start shaking too much outwardly. But I’ve also been sleeping most of the morning as I couldn’t sleep last night, so I woke up shaking. If it gets too much worse then I’m gonna have to take a Clobazam. I never thought that keeping ur body temperature regulated would be such a pain but it is. The person I was talking to outside said he could see me shaking and my words were slurring; so I might just take one now and hopefully stop the tonic clonic one away even if it’s just for a few hours 💜💜
U guys must’ve been frozen 🥶 by the time u got back home! 💜💜💜

August 19

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