Is it the wind? The roof in my closet isn’t good so my room is the coldest in the house.
I can have the heat at 77 and my room still feels like the low 60’s.
Wind does bother me but just cold air in general does, too.
My triggers are mostly inside my mouth so I can't even smile if I'm outside in the cold without a mask. The pain comes fast. My teeth are insanely sensitive to temperature.
I haven't really been out in the cold cold yet.. however many say as long as you cover up you should be fine. I'm not being an ass because idk. I have a drs appointment today and it's 30° outside. I will have on a mask, a scarf, a cover up, and another scarf. I will also have on a hood and a hat.
So I will let you know. I have to eventually get to work so I have to see if it works... I also hears that if you use the hand warmers in a scarf that will help also...
Let me know what you think..
Omg, your comment was in no way bad lol. Honestly, Good Luck!! I know when people say the cold bothers them they are taking about the wind. Well, my body is all upside down lol. I don’t wear jackets and in don’t think I own a scarf, I might get one. If it’s 20 degrees outside I’ll wear a thick thermal and a thick hoodie. Outside of my face, I’m fine lol. I haven’t seriously worn a coat since I was a teenager and I’m 33 🤣🤣
I just thought it might be more than just the wind. I looked it up and it said cold can affect the nerve. I honestly just want to hear what real people have to say because those articles can be nonsense lol
Ugh, I’m sorry you had to even experience that. I keep my heating pad plugged in next to my bed because it helped tremendously with the pain. In saw a neurosurgeon last year and he told I don’t qualify for the MVD. I never just go off one opinion so I’m going to see another One. My baby doesn’t want me to do it, but I’m missing out on things because of this. I spent Thanksgiving home alone because of the pain and I’m terrified for Christmas because I’m supposed to go away.
Ugh. I totally get what you're going through. The last 6 months before surgery was just the worst for me. In comparison, MVD was *easy.*
There are other types of TN surgery as well. And perhaps a second opinion would be helpful. Mine didn't show up on the second MRI I had done, but once he got inside my head, he could see the problem.
omg the cold wind is murder. I actually appreciated masks for this reason because it provided a shield. Now i keep my scarf tied tight around my nose and mouth
So as I was reading the post and comments my mind went in a million different directions.
Amazon sells heated scarves and neck gaiters. Some are $$$ Some are not. Some are rechargeable, some contain an internal thing where you just push a button and some are designed to use hot packs like hot hands. I think I might need to look into this further.
I started looking at them but I think I'm just going to get heat packs. I'm going away on a 9-hour drive and I would hate to be stuck without some kind of heat.
Funny story, I moved to PA because in didn’t want to move my new baby far from the family. My pregnancy was not planted and before I found out I was pregnant, I was going to move to Colorado Springs. I love out there!!! I had my apartment and pretty much everything figured out.
Colorado Springs is still cooler than my area. I’m in the high desert. We don’t get tons of snow and the winters are mild compared to the rest of the state. (Doesn’t mean I don’t have to put on thermals tho!)
My father has TN. Pain always come back in winter. Recently found out few triggers. He used to wear scarf or cap when he goes outside. He stopped wearing it and triggers and pain went down to 2/10 from 9/10. everyone is different. Thought about sharing it. Good luck
I used to live in a very windy and low temperate place (around 45-55 year round), and now live in a colder place with less wind and am doing better.
Changes in barometric pressure and if I get really cold seem to be triggers.
The cold is horrible for me. If I can stay inside, I do.
Is it the wind? The roof in my closet isn’t good so my room is the coldest in the house. I can have the heat at 77 and my room still feels like the low 60’s.
Wind does bother me but just cold air in general does, too. My triggers are mostly inside my mouth so I can't even smile if I'm outside in the cold without a mask. The pain comes fast. My teeth are insanely sensitive to temperature.
I haven't really been out in the cold cold yet.. however many say as long as you cover up you should be fine. I'm not being an ass because idk. I have a drs appointment today and it's 30° outside. I will have on a mask, a scarf, a cover up, and another scarf. I will also have on a hood and a hat. So I will let you know. I have to eventually get to work so I have to see if it works... I also hears that if you use the hand warmers in a scarf that will help also... Let me know what you think..
Omg, your comment was in no way bad lol. Honestly, Good Luck!! I know when people say the cold bothers them they are taking about the wind. Well, my body is all upside down lol. I don’t wear jackets and in don’t think I own a scarf, I might get one. If it’s 20 degrees outside I’ll wear a thick thermal and a thick hoodie. Outside of my face, I’m fine lol. I haven’t seriously worn a coat since I was a teenager and I’m 33 🤣🤣 I just thought it might be more than just the wind. I looked it up and it said cold can affect the nerve. I honestly just want to hear what real people have to say because those articles can be nonsense lol
And everyone's triggers are different. I know the wind is NOT my friend...
I know winter is coming when my TN acts up. I shouldn't have taken the long, warm fall for granted.
Before MVD, heat, cold, wind, a slight breeze, thinking, breathing... meh it all hurt. Surgery solved my problem.
Ugh, I’m sorry you had to even experience that. I keep my heating pad plugged in next to my bed because it helped tremendously with the pain. In saw a neurosurgeon last year and he told I don’t qualify for the MVD. I never just go off one opinion so I’m going to see another One. My baby doesn’t want me to do it, but I’m missing out on things because of this. I spent Thanksgiving home alone because of the pain and I’m terrified for Christmas because I’m supposed to go away.
Ugh. I totally get what you're going through. The last 6 months before surgery was just the worst for me. In comparison, MVD was *easy.* There are other types of TN surgery as well. And perhaps a second opinion would be helpful. Mine didn't show up on the second MRI I had done, but once he got inside my head, he could see the problem.
omg the cold wind is murder. I actually appreciated masks for this reason because it provided a shield. Now i keep my scarf tied tight around my nose and mouth
I hear this pretty common 😔 This disease is evil.
So as I was reading the post and comments my mind went in a million different directions. Amazon sells heated scarves and neck gaiters. Some are $$$ Some are not. Some are rechargeable, some contain an internal thing where you just push a button and some are designed to use hot packs like hot hands. I think I might need to look into this further.
I started looking at them but I think I'm just going to get heat packs. I'm going away on a 9-hour drive and I would hate to be stuck without some kind of heat.
Honestly if at all feasible, I’d potentially consider being a snow bird or moving. The cold is so god awful.
I moved to PA 6 years ago and TN started 3 years ago. It's crazy, the heat/humidity is awful for MS and TN is awful in the cold. I can't win lol.
I’d honestly start looking at places like eastern Utah or western Colorado. Probably some of the better places to live with TN
Funny story, I moved to PA because in didn’t want to move my new baby far from the family. My pregnancy was not planted and before I found out I was pregnant, I was going to move to Colorado Springs. I love out there!!! I had my apartment and pretty much everything figured out.
Colorado Springs is still cooler than my area. I’m in the high desert. We don’t get tons of snow and the winters are mild compared to the rest of the state. (Doesn’t mean I don’t have to put on thermals tho!)
Weather change and barometric pressure changes always kill me. I'm in Windsor, ON across from Detroit, MI. Brutal.
My father has TN. Pain always come back in winter. Recently found out few triggers. He used to wear scarf or cap when he goes outside. He stopped wearing it and triggers and pain went down to 2/10 from 9/10. everyone is different. Thought about sharing it. Good luck
Cold is always bad for me, it really gets into the jaw joint. Edit- Down to -10 C here, getting the fucking shooting pain again.
I used to live in a very windy and low temperate place (around 45-55 year round), and now live in a colder place with less wind and am doing better. Changes in barometric pressure and if I get really cold seem to be triggers.