Does anyone have experience in dealing with severe scalp pain and advice about hair from your experience? I keep my hair just long enough to pull back and anchor down. I'm thinking that short hair would have more ends to be flying around. My hair moving around is too painful to tolerate. It hurts too much to wear a hat when it gets cold. So hair protects from the cold and the sun. My forehead has been red and swollen for 4 years (along with my scalp) and it's too painful to let any hair touch my forehead. My neurologist guesses that it's best to leave my hair as it is, but doesn't have experience with patients advice on it. Thanks.
My TN started with tremendous scalp pain. It felt like your head feels right after you bump it on a corner of something. Over and over and over again. I cut my hair off to this length, and all I had to do was wash it. No drying, no pulling it back. No coloring it. It worked so very well. Then my husband told me he missed my longer, less-gray hair. Sigh. So I'm growing it out. Fortunately, the scalp pain has receded.
Now, my pain is squarely in my ear, my mouth, and on my face. I wear a Buff with ice packs in it almost 24-7 these days, so I end up braiding my hair back to keep from looking like I'm wearing a fright hat ... one of those visors with the "hair" sticking out of the top.
I am new to this. Do I hit "reply" or "reply to discussion"? Can't even remember which one I just hit. Anyway, thanks for your reply. Seeing how you handle the scalp pain is so interesting. Those Buffs are beautiful. So sorry you have to use it for pain. I did get a Buff some time ago, but couldn't figure out how to try it out without it touching my forehead. Nothing can touch my forehead. It would have to go around my mouth which would be OK with my kids! Does the ice hurt on your ear? When you tried having your hair short didn't your scalp hurt when a breeze moved your hair?
Beth said:
My TN started with tremendous scalp pain. It felt like your head feels right after you bump it on a corner of something. Over and over and over again. I cut my hair off to this length, and all I had to do was wash it. No drying, no pulling it back. No coloring it. It worked so very well. Then my husband told me he missed my longer, less-gray hair. Sigh. So I'm growing it out. Fortunately, the scalp pain has receded.Now, my pain is squarely in my ear, my mouth, and on my face. I wear a Buff with ice packs in it almost 24-7 these days, so I end up braiding my hair back to keep from looking like I'm wearing a fright hat ... one of those visors with the "hair" sticking out of the top.
Hi Jennie,
The ice feels DIVINE on my ear. Without ice, my ear often feels like a blow-torch is blowing out of it. Even on days when my TN is quiet and I don't use the ice, if I catch a cold breeze to the face from air conditioning or cold winter air, I breathe a bit of a sigh if relief. The odd thing is that I also have times the just cold air going up my nose triggers pain in my face, and I have to wear an ear plug stuffed in my right nostril.
Have you tried lidocaine gel or capsaicin liquid on your scalp to numb the pain? I did capsaicin on my scalp for about 6 months, but then summer came and the heat caused it to really burn. If you do choose to try the capsaicin liquid, just be sure to tilt your head way back when you wash your hair to avoid getting it into your eyes (like I did ... ow). You might also get relief on your forehead the same way or with lidocaine patches. I sometimes wear them on my cheek when it's really acting up.
As for the short hair, it was a godsend, but blowing strands of hair didn't cause me pain. I'm sorry you have such exquisite pain from your hair, Jennie. It must make you want to wax your head sometimes!
I can see why doctors have a hard time trying to help us all. I haven't yet heard of two people with the same symptoms.
Cold air is a relief to you, but cold air is horrible for me especially if it's moving. I have to stay inside most of the time because the outside world has air blowing everywhere. I fill a water bottle with the hottest water possible and hold it up to my face for some peace from the pain. My arms get tired from holding it and eventually I'm burning my skin so I have to stop. If I don't have a hot water bottle handy I can cup my hands and exhale every breath on to my face .Even though it doesn't reach up to my forehead, it helps some.
Yes it IS tempting to have my head shaved to avoid the moving hair problem, but how do I know what that would be like. I would freeze in the winter since I can't wear a hat. And my scalp might still hurt like my forehead does now without any hair being there.
Yes I tried lidocaine and capsaisin when I first got this and they did nothing at all. The pain seems to be in some mysterious location that is not skin, but seems like it is skin and it is activated by touching the skin. Does this sound familiar?
I do try ice every now and then since I hear of it helping other people. But it's so painful for me.
Your nostril ear plug is a new one!