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Old 07-09-2015, 09:42 PM #1
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I was reading your intro in new members forum . I can relate to the moving air, breeze being a trigger for me . I used to cover my lower face with bandanna or scarf . also hid inside on windy days and cold days and never allowed car window to be down or the air conditioner or fan to blow on my face or to kiss my kids or hubby. mine is my lower jaw and lip chin. now picture that some chick in Florida where it is 95 degrees wearing a scarf into food store or bank ... yeah got some weird stares for sure.using metal forks spoons were a no no for me as it set off the pain so i used plastic silver wear and straw rather then drink from cold or warm glass/cup. have you been on any anti seizure medication? I too use Marijuana . it not legal here at all ... so i did not say that !wonder dose warm towel on the area help at all.? does it hurt to wear a hat over ears? it most likely hurts when you lay down because of blood flow and touching that area on pillow or what not. try sleeping in recliner or prop up pillows. . It getting kinda late here but we should keep this topic going because we all need ways to cope with this . and anyone else who has tips please post them they would be very helpful. Peace
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Old 07-10-2015, 01:14 PM #2
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Quote:
Originally Posted by Burntmarshmallow View Post
I was reading your intro in new members forum . I can relate to the moving air, breeze being a trigger for me . I used to cover my lower face with bandanna or scarf . also hid inside on windy days and cold days and never allowed car window to be down or the air conditioner or fan to blow on my face or to kiss my kids or hubby.
I've had to start doing the same thing. When I'm driving, I can't have the driver window down because it's too distracting. The area around my left ear is more sensitive, so not only am I feeling the wind more, but I can feel it bothering my ear, even early in the morning when my pain is at the lowest intensity.

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Originally Posted by Burntmarshmallow View Post
have you been on any anti seizure medication? I too use Marijuana . it not legal here at all ... so i did not say that !
So far, I've gone through all of the anti-seizure meds that are available to me up here. To be blunt (ha ha, bad pun GO!), marijuana is really what allows to function throughout the day. When I've stopped using it, I've had more freguent & intense pain until I smoke again. It's unfortunate I'm so dependent on it, but it works miracles for me.

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Originally Posted by Burntmarshmallow View Post
wonder dose warm towel on the area help at all.? does it hurt to wear a hat over ears?
Warm water & compresses can help to relax my head when it feels like my head is in a vice, but so far I haven't found a sweet spot for my ears. Thankfully, I am able to wear skullcaps & similar hats to protect my ear & face from the wind & cold.

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Originally Posted by Burntmarshmallow View Post
it most likely hurts when you lay down because of blood flow and touching that area on pillow or what not. try sleeping in recliner or prop up pillows.
It's partly because of the blood flow, but it's also just the natural weight of your head being felt on whatever part of the head you sleep on. I've tried sleeping while propped up, but haven't gotten the right angle or amount of cushion behind myself to make it comfortable.
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Old 07-10-2015, 07:06 PM #3
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Hi Itzagi,

Have they tried you on Topiramate? I take it for my Chronic Cluster Headaches, and really noticed in February this year when I upped the dose, that the side effect that has it reduce Neuropathic Pain - through some magical system - cuts my TN pain, and the pain from the Paresthesia, by a couple of points. Add Lidocaine Infusions and Oral Ketamine to this mix and the TN pain goes from 15 to 7-8 on a scale of 0-10, and the Paresthesia is a 4.

If only the Topiramate worked as well on the Cluster intensity. Ho-hum

Dave.
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