im new to the site i have a question what do u guys do about going outside. Do u wear hats on your head in the spring and summer?.I was just diagnosed with tn in febuary and im lost on what to do. My face hurts when the wind blows so i try to wear hoodies alot. How can i cover the left side of my face i cant put the driver side window down or open the sunroof or have the ac directly pointing in my face.What to do.I dont want to walk outside in the summer looking crazy with a skullcap on cause my scalp cant take the wind.
I feel for you. I'm just trying to figure this out myself. So far, I've been wearing scarves around my face because I can't handle the wind blowing directly on the side of my face. It covers my scalp too, kind of like a muslim woman would wear. If you only need your scalp covered a hat might work. I can't handle wind, ac, etc either on my scalp or the left side of my face.
Maybe a jacket with a high collar that you could flip up?? But definitely the scarf idea. I, like you, use the hoody. I wear it around the house. I never know when my ears will start actin up.
You could try and find a very light hoodie -- a summer hoodie, one with light fabric. I live in California and since it doesn't get super cold here, they sell lots of thin hoodies. That's all I can think of...
i cant take wind on the scalp or my head and i live in nj. Thank u guys for the ideas i will try the light scarves idea.
Will,
First of all--sorry you have to experience this. I see where some of our members have already told you about the scarves, etc. You will find you have fewer problems in the summer. You will be amazed at the difference a few degrees in the thermometer will make. You might not have to cover up so much.
My pain usually starts in my ear, so I use a cotton ball to block air in my ear. I use the hoodies and pull the hood or hold the hood over part of my face when I walk. Read through some of the methods we all use to help ward off attacks on this site. Try not to sleep with your face on your bad side (I had to change a lifetime of left side sleeping.) Don't let the show blast you on the affected side. If it is very windy---cover up more. If you are newly diagnosed, you and your doctor are probably working on the right meds to help keep your pain down. If you haven't already done so, get your hands on the book, Striking Back. I found it helpful. Keep reading and researching on your own---we have all tried a bit of everything and most of us find solutions to help.
Do not be discouraged. Hope you are feeling better.
Mary
This is a challenge Will. I did find a hood from a hunting supply store where the bottom of the hood turns up inside to cover your mouth and nose. I use it to ride my bike outdoors because hoods didn't keep wind or sun off good enough. I went to a bycycle shop and found they make light weight ones as well, I think they're called Baklavas or something, mine is made of fleece. I wrap my head with scarves too. I found ways on-line. I also wear really big sunglasses. I have been profiled though ( I'm told I look Turkish) and remove my glasses or face covering in businesses, unless I'm shopping in the refridgerator section. I did have a lady laugh at me and make a Bedouin woman call at me. Whatever. My friends and family have been having fun with me, but they are helping to find me something too. I'll share any findings. God Bless you Will.
Are you currently taking any meds?
Will, I just noticed a typo in my response--the word should have been "shower" and not show. I don't know if growing a full beard would help--the men would have to jump in on that one. I tried wearing one of those full pullover hoods with the drawstrings (I looked like Kenny on South Park.) It works in the Winter, but a lot of trouble going on and off with my glasses.
Just a baseball cap might help.
Mary
im on lyrica now anyone on that? bad side effects?
Will: MaryMo was right about the effect a few degrees in the thermometer will make. I lived in Indiana and moved to north florida. The winter was mild this year and only had to wear my SWAT team hat a few times. That thing covers my entire face except my eyes. One thing I did learn was that as soon as I entered a store or business, I had to remove it a once or the police/security would be showing up in short order. It did get peoples attention, but the heck with them if it keep the pain down. Hoodies are great between fall and winter and winter and spring, but I have to pull it down on that side of my face and of course I am blind on the other side. Wife has been great about it and gives me her arm (just like a fully blind person) and she keeps me out of trouble.
This has been a real bear but you learn to adapte and overcome.
Do you have trouble bending over? I have found that when I bend over or do something that causes a quick blood flow to the head will set it off, just a lot to learn on what you can do and what you can-not.
Hi - I have to wear a hoodie some times in the hotel room when I sleep because the air conditioner blows on my face - so I hear you with that one. The best thing I can suggest is taking a LOT of b12 with a b complex. I just came down from 6000 mg a day of b12 (4 -1500 mg B12) and you have to take the B Complex as well to aid the B 12 to absorb and work. I swear by my B 12 they help mend the bad nerves. Also try to go without any type of chemical in your food or drink or toothpaste. I use Toms natural toothpaste and that helps. I also stopped all Nutra Sweet or other artificial sweetners that is what kicked my TN into high gear years ago. Eat as much natural food as you can fruits like berries are good fighters as well as vegetables. I don't drink alcohol any more and have not had caffeine for years. I know this sounds tough but just pay attention to when the pain gets worse think of what you ate or did differently. Years of my own analysis has helped me to take things out of my diet and add others so I live virtually pain free. It is worth trying. I also take elavil at bed time - a low dose helps me now but when pain was at an all time high 100 mg worked for me - but I am sensative to meds so you may need higher dose.
I understand exactly what you are saying. I have the same problems with the wind, a breeze, not being able to have the window down in the car on my left side.Although the pain tends to be worse when the air is cold I still have the same problem even when it is warm. It is difficult to cover your face when you are unable to even touch it. I wear a hoodie like scarf . It is one piece with a , hood and two longer pieces one coming down each side. I am able to have the hood part on loosely without it actually touching the side of my face, but covering it enough to block the wind. I am able to tie the scarf ends of it loosely around my neck to keep the hood part in place and block the cold air and any wind from hitting the lower part of my face. I have not gone anywhere without it for months .I too, have been wondering what I will be able to use as summer comes and the temperatures become warmer because my "scarf/hoodie" will definitely become much too hot. If anyone has any suggestions I would like to hear of them too! I keep telling my husband we need to invent something for people with this problem. well Will, we do not know each other but from now on I will be thinking of you everytime I put my "scarf/hoodie" on knowing that somewhere out there is someone walking around with a hoodie on too for the same reason. I imagine there are many of us! thinking of you- amy d
Amy i definetly feel what u r saying. I was also thnking of inventing something too cause the problem is not going away. I will also be thinking of u as well