I have asked this question to my MS nurses and neurologists and they just look at me blankly, unable to answer so thought I would post it on here.
Sometimes, I get the sensation in my head of ice cold water trickling on my brian. I initally thought that this was due to an new lesions but when I have had this in the past, followed by MRI’s with contract, it showed no new lesions.
I am getting ot again today, every so often but not constant. I had a cold which lingered at Christmas time and did make my current /previous MS symptoms play up but nothing more than this (thankfully).
Does anyone else experience this and know what this could be ?
Other people have had similar sensations. My wife (Parkinsons) had the sensation of cold water running down the outside of her right leg, perhaps 12-15 years before diagnosis. Our youngest (nursing up in Lancashire) has had one client with the same sensation. I have heard of two other people who get it down their backs.
What can it be? My guess is that it is a problem with the touch/light pain sensors in the skin - or with the part of the brain that these sensors feed, or somewhere inbetween. If it happens with MS and Parkinsons both, something neurolological is a reasonable bet.
So, no you are not alone, and no, it is not that common either.
Hi Helen I’ve not had it in the head but experience it quite a lot from my chest down to my waist - weirdest sensation ever. I mentioned it last time I saw my GP and she said it was a common symptom of MS. Hope it hoes soon Sue x
i had this just before my diagnosis,years ago,mine felt like icy water being poured into my brain,and running down my spine,when i mentioned it to the dr,they just blankly looked at me !
i have no idea what causes it, i just put it down to one of those weird sensory ms feelings,i found it so weird at the time.
Presume there doesnt need to be a new lesion; maybe an existing one grew or altered in distribution. Maybe it is only triggered by rarely occuring circumstances.
I have not been diagnosed, i just Googled “why does it feel like ice water running on my brain” and this forum popped up. Not i’m worried.
I sometimes feel like i have an ice pack under my skin on my neck/shoulder area. Then months after that, i started feeling like i had ice cold water running on the back of my head, but under my skin. I mentioned it to my doctor and she said it was caused by nerve damage but no tests were preformed to confirm this.
Should i be asking my doctor about MS?
Hi, I get this, not only in my head, but the whole of the right side of my body, which by the way is the worst side effected by the MS, it goes from this, to extreme heat, so weird.
Jean
Hello,
I am a 33 yr old male amd I also get this sensation. I have not had it checked or diagnosed as it does not happen very often and does not impead daily functions. Mine only occurs in the top of my head and it is just how you decribed. A cold sensation like water slowly being poured in one spot and dispersed out from there. The feeling only spreads a few inches from the starting point and last approximately 30 seconds to a minute. I could be sitting or moving. These events happen very randomly and sometimes not for a few months to longer. I actually just had one before posting this which made me find this online forum in the first place. I’m not sure what it is called. Still looking into it.
Hi Robster, my wife is experiencing the same thing you described to a T. I’ve have just begun researching about this, so i have no information to offer yet. But i would really appreciate it if you could forward/add any information you have on it. Thank you in advance.
This sounds like Lhermitte’s Sign, a bit like a cold shudder feeling.
I think if it causes pain down the back of neck, it’s called Paroxymal;* I only wish I knew the name to describe it, but it was pre-search engine times back then.**
*I’m no medical expert.
**Early doors internet was quite basic unlike today, with own DIY diagnosis.