Anyone else having a huge challenge wearing the masks? I mostly stay home and am not around people so I don’t have to wear one but went to look at a home the other day and almost had to run out.
Haven’t dared to try a mask - my main trigger point is in the middle of my cheek. Had a hospital appointment today, and just wrapped my usual soft scarf round - they were fine about it, as long as my mouth and nose were covered.
I hadn’t thought to just use a scarf! I will keep this in mind.
Yes, mask and scarf wearing is a problem for me! I’m sick of the dirty looks from people if I have to run inside for a few minutes to buy something. People don’t understand and think I’m just being a jerk.
I’m wondering if you might do better with a buff type of face cover. This is the brand that I bought, and it’s super affordable. I’m also wondering if a face shield might be a better option for some people. I’m just throwing out ideas, because I can see how the thinner straps might apply more direct pressure, and that might need to be avoided for some.
Sharon from ModSupport
I don’t know, looking at that gives me claustrophobia anxiety. Looks so tight on the face. But appreciate it!
Yes! It’s like people have assumed that if your not wearing a mask it is a political statement and not due to actual health related problems and it’s not right! So much hate on the internet. I had to call a friend out who posted “Your mask isn’t making it so you can’t breathe. Your mask isn’t giving you a migraine. You’re and asshole” and I was like hey, the mask does actually cause me problems with my physical and mental health. She apologized but I’m sick of seeing so much animosity when people don’t have the whole picture. I hope that you don’t encounter too many more rude people on your quick outings. 
I got one of those cheap soft blanket and cut it to be a scarf I have also cut it to use on my face when I’m in pain I put it on my face to help keep it warm when I’m in pain The blanket only cost me $2.50 but for the scarf I do not make it very tight at all and it’s very soft on my skin because my triggerpoints is my ear and my cheek and that scarf has helped me to be able to wear it when I fly and I’m usually able to wear for about an hour to an hour and a half without major problems but there are a lot of times that I go without a mask and people do get me those weird looks but I have had this pain for over 15 years and at this time I don’t care anymore what people think and I’m tired of trying to explain the disease that I have and when I do say trigeminal neuralgia they always think of fibromyalgia and I tell them they are nothing alike
I hope this works for other people
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I’m planning on asking my neurologist for a note. One of my triggers is my lips. Left side. I suffer through the mask when grocery shopping but that’s pretty much it.
Perhaps a lightweight scarf or shawl? I use one and loosely wrap but keep mouth and nose covered. A bandana tied in back covering the mouth and nose can do the job - depends on where your trigger points are. I have also used a wide hair band and even a lightweight neck gaiter. I am bilateral TN have had two MVDs. Sending you lots of support !
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I rarely go out. I wear glasses. When I am at home, I can go without my glasses, so wearing a mask doesn’t bother me as much as glasses. I get the lightest weight frames I can find. I cannot wear contacts.
I am so sorry to hear you are experiencing this problem. After having MVD almost seven years ago I have been problem free with wind, pressure on my face, etc. I feel badly when I read about these continuing issues and strangers not understanding some of us really cannot tolerate wearing masks.
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I know exactly what you mean. I wear a mask at the grocery store and to the doctor and dentist, and even though I made it as light weight as I can it still triggers pain if worn for very long. I mentioned it to my neurologist on my last visit and surprisingly even she gave me a blank look that I took to mean that she just didn’t get it.
Ah yes my glasses are a challenge for me. Not as much as yours. I can usually wear mine for an hour sometimes two on a good day without an issue unless I’m already flaring.
That really positive about your MVD!
I was thinking about doing the same but I haven’t seen my neurologist in a few years because I ended up controlling it better without the prescriptions.
Wow I can’t believe even the neurologist didn’t seem to get it!
I am out a lot, and I always wear a mask. It is not required here. Most people wear them. Usually people here are very polite in public, and l have not heard any open harrasment to non-wearers.
I have several mask.s, and yes, they sometimes make me flare very badly! I get in a corner, lift it up and just breathe for a little while. Not the best solution.
Looser masks work better. I try different kinds. I may try the scarf. Thanks
I’m on gabapentin. Small dose due to intolerance to side effects (vision)
Type 2 tn. Always burning and numb. Tooth pain. More manageable with gab. But flares with mask. Hopefully she’ll write an exemption for me. I’ll probably have to pin it to my shirt so no one gets mad.
I maxed out with meds and was more than happy to have the surgery. It really was easy and the recovery was quick. I do live with some issues from the surgery but it was worth it. I felt I could no longer live with the pain I was experiencing on a daily basis. Everyone‘s TN journey is different.
Good luck!
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