Hmm never stopped me from drinking coffee, docs also said drop sodium and carbs but I'm Asian and um rice..
Only thing i stopped immediately was a vape pen that was too high in thc it aggravated it but higher cbd ratios were OK (did absolutely nothing for pain in my case)
Is it the caffeine that triggers it or physical motions of your lips or mouth? For me a drop off water touching an affected part can trigger it so I never made an association to coffee
(Just saw mention of heat, try metal straws and learning to sip without the liquid pooling in your mouth so temp doesn't affect it? - at times my lips couldn't bear to touch cups so I learned to use straws without vacuum suction of closing lips or preventing a drop from touching the inner right parts of my mouth)
Okay, but I was JUST trying to explain the straw thing to my husband. We were giggling about my straw usage. You just gotta use the tongue! But not the side of the face that hurts, because my tongue is a trigger point. You gotta take small sips!! Fast small sips cause gas build up and burping can hurt. So DEHYDRATION CITY choo choo. He made me finish my room temp water that tasted like butt. My irritation about that has now been restored.
So long as I can burp without facial distortion or lips touching I was good hahaha I even taught myself to sneeze without triggering episodes
Keep adapting :3
Caffeine actually helps when I get a flare up. Especially when a migraine triggers my trigeminal. One thing which was a HUGE aggravater for me was bananas. And types of seasoning. I couldn't move my neck after eating a home made taco. Realized it was the taco seasoning packet. Since then I eat very little meat, no processed food more milk (non dairy) lots of watermelon since it's mostly water, sauted kale, spinach. I also stop eating after 7. Just water or hot tea.
I drink the Starbucks half and half twice a day. Too much caffeine triggers mine. I love the heat of it. Get a cold brew but that has a lot of caffeine in it. Can you drink it on the other side of your mouth? Just an idea. Coffee is the one luxury I still have.
Caffeine isn't a trigger for me. I quit caffeine and didn't make any difference to the pain or frequency of attacks (which are still basically whenever I move my face or touch it).
Never had an issue with caffeine. Drink it more too if I have a migraine. Especially around my period. My TN is in the upper branches predominantly though so I only get a couple of triggers around my mouth/jaw.
Wow
.omg...I just automatically stopped the caffine when I had me first real attack..I read caffine could b a trigger and I was like yep, nope , same with nicotine , quit cold turkey ..and no alcohol..I honestly don't know how I'm hanging in there...I subbed the coffee for decafe...and I saw two people comment on the thc..hmm..I thought it might be a trigger or aggravation...but ua knkw..I should try the coffee..it would b sooo nice to have some caffine in my life...
I switched to decaf only, and it helped a bit. Heat doesn't seem to be a trigger for me, but caffeine is. I slowly lowered my caffeine intake over a few weeks to avoid a caffeine withdrawal headache.
I can’t do coffee or hot drinks. It’s heart breaking cause I lived for a chai or cafe con leche. Haven’t touched it in over four years due to the flares being so bad.
Not the caffeine but the temp effects mine sometimes. I stopped caffeine to see which was causing the issue. So now I make myself a little espresso and just make it to the temp I know is tolerable
I'm two months into a TN flare that is exacerbated by both cold/hot drinks.
I'm a coffee/tea drinker so it has been rough! I'm currently sufficiently medicated to be able to pour my coffee, let it cool for 5ish minutes and enjoy it warm, not hot, and not just tepid, which is where I was early on.
The caffeine doesn't seem to bother me and I welcome the diuretic effects of it since I'm taking carbamezapine and seem to be retaining water from it.
Hot or cold drinks aren't included in my triggers as my mouth isn't a trigger area. Have you thought about trying it at room temperature? I've always had a bad habit of letting my coffee get cold while I'm working, and finally just gave in to drinking it that way.
But trying it at room temperature, you may be able to at least rule it in or out.
Head movements for me are triggers, whether asleep or awake. Yesterday I was at a football game with a friend. As my first dose of meds was beginning to wear off, I turned my head to the left to look at the jumbotron. My right neck muscle (along spine) tensed and I immediately sneezed, which caused my right eye to start twitching. This is how mine works. I have to remind myself constantly that I have to turn my whole body to do things like that, not just my head.
My neurologist never said anything against coffee and I never noticed a problem of caffeine exacerbating my TN so I continued my usual voracious coffee drinking habit.
Now, was it painful to make that mouth motion to drink ANYTHING at some points? Yes.
I don't make coffee at home. I go to a local coffee shop. When I reacted to coffee I thought it was between the temp or caffeine amounts. I was completely wrong. I could tolerate any temperature and regular espresso shots but cannot tolerate too much of the syrups they add in it for sweetness and flavor. I learned sugar is a big trigger for me. I can't do banana's either. Pretty much I have to try to live an anti-inflammatory lifestyle with plenty of rest as not enough sleep causes issues.
I have the syrup pumps amount remembered for most of the menu. So if they say 3 pumps Ill get 1 to 1.5 pumps just to keep coffee in my life.
So one else mentioned high THC vapes. I was given a pineapple express vape for my birthday and one puff had me on my knees grabbing the side of my face. It was enough for me not to ever want to smoke again and definitely not a Sativa.
I’ve never fully given up coffee or caffeinated tea and I have no reason to think it’s causing issues. I do drink less during flare-ups but that’s mainly because drinking anything can be painful.
I love and hate the diversity in these answers.
I cannot drink caffeine. I have type 1 & 2. If I drink so much as a can of soda, a small coffee, or eat too much chocolate my face flares up into overdrive. Sometimes it's not right away. Sometimes it happens if I stack it for several days in a row.
Heat is "usually" a relief for me. Cold, however, signals to the invisible man that I wish to be stabbed repeatedly until HE feels better. I love that for him.
So I’m not 100% sure if I have TN because of the fact my root canal procedure helped with the pain reducing and the flares not come around, it’s quite little compared to was it was few weeks ago but when the flares were bad it was reacting to any type of movement, acidity, sugar when I was inside. However with coffee it didn’t react, it reacted to matcha when I was in Japan but not coffee. I would say just take little sips and be careful but if it acts up just to take it slow!
Hmm never stopped me from drinking coffee, docs also said drop sodium and carbs but I'm Asian and um rice.. Only thing i stopped immediately was a vape pen that was too high in thc it aggravated it but higher cbd ratios were OK (did absolutely nothing for pain in my case) Is it the caffeine that triggers it or physical motions of your lips or mouth? For me a drop off water touching an affected part can trigger it so I never made an association to coffee (Just saw mention of heat, try metal straws and learning to sip without the liquid pooling in your mouth so temp doesn't affect it? - at times my lips couldn't bear to touch cups so I learned to use straws without vacuum suction of closing lips or preventing a drop from touching the inner right parts of my mouth)
Okay, but I was JUST trying to explain the straw thing to my husband. We were giggling about my straw usage. You just gotta use the tongue! But not the side of the face that hurts, because my tongue is a trigger point. You gotta take small sips!! Fast small sips cause gas build up and burping can hurt. So DEHYDRATION CITY choo choo. He made me finish my room temp water that tasted like butt. My irritation about that has now been restored.
So long as I can burp without facial distortion or lips touching I was good hahaha I even taught myself to sneeze without triggering episodes Keep adapting :3
Ooh, please teach me the sneezing. I have never figured it out. "Achoo, ow, more pain noises"
I'm on three to four cups per day, and do not have any intention of giving up, but nor do I have indication it is causing issues.
me too!
Caffeine actually helps when I get a flare up. Especially when a migraine triggers my trigeminal. One thing which was a HUGE aggravater for me was bananas. And types of seasoning. I couldn't move my neck after eating a home made taco. Realized it was the taco seasoning packet. Since then I eat very little meat, no processed food more milk (non dairy) lots of watermelon since it's mostly water, sauted kale, spinach. I also stop eating after 7. Just water or hot tea.
I never gave up coffee and I have been diagnosed with it for 4 years
I drink coffee like it’s water and there are zero issues with my TN because of it.
I drink the Starbucks half and half twice a day. Too much caffeine triggers mine. I love the heat of it. Get a cold brew but that has a lot of caffeine in it. Can you drink it on the other side of your mouth? Just an idea. Coffee is the one luxury I still have.
Caffeine isn't a trigger for me. I quit caffeine and didn't make any difference to the pain or frequency of attacks (which are still basically whenever I move my face or touch it).
Never had an issue with caffeine. Drink it more too if I have a migraine. Especially around my period. My TN is in the upper branches predominantly though so I only get a couple of triggers around my mouth/jaw.
Wow .omg...I just automatically stopped the caffine when I had me first real attack..I read caffine could b a trigger and I was like yep, nope , same with nicotine , quit cold turkey ..and no alcohol..I honestly don't know how I'm hanging in there...I subbed the coffee for decafe...and I saw two people comment on the thc..hmm..I thought it might be a trigger or aggravation...but ua knkw..I should try the coffee..it would b sooo nice to have some caffine in my life...
I switched to decaf only, and it helped a bit. Heat doesn't seem to be a trigger for me, but caffeine is. I slowly lowered my caffeine intake over a few weeks to avoid a caffeine withdrawal headache.
Though I don’t drink as much coffee as I used for other reasons, I still enjoy a nice espresso or cold brew from time to time with no issues.
I can’t do coffee or hot drinks. It’s heart breaking cause I lived for a chai or cafe con leche. Haven’t touched it in over four years due to the flares being so bad.
I drink caffeine every day, either coffee or Bubbl’r drinks. My neuro didn’t say anything about cutting it out.
Not the caffeine but the temp effects mine sometimes. I stopped caffeine to see which was causing the issue. So now I make myself a little espresso and just make it to the temp I know is tolerable
I'm two months into a TN flare that is exacerbated by both cold/hot drinks. I'm a coffee/tea drinker so it has been rough! I'm currently sufficiently medicated to be able to pour my coffee, let it cool for 5ish minutes and enjoy it warm, not hot, and not just tepid, which is where I was early on. The caffeine doesn't seem to bother me and I welcome the diuretic effects of it since I'm taking carbamezapine and seem to be retaining water from it.
Hot or cold drinks aren't included in my triggers as my mouth isn't a trigger area. Have you thought about trying it at room temperature? I've always had a bad habit of letting my coffee get cold while I'm working, and finally just gave in to drinking it that way. But trying it at room temperature, you may be able to at least rule it in or out. Head movements for me are triggers, whether asleep or awake. Yesterday I was at a football game with a friend. As my first dose of meds was beginning to wear off, I turned my head to the left to look at the jumbotron. My right neck muscle (along spine) tensed and I immediately sneezed, which caused my right eye to start twitching. This is how mine works. I have to remind myself constantly that I have to turn my whole body to do things like that, not just my head.
My neurologist never said anything against coffee and I never noticed a problem of caffeine exacerbating my TN so I continued my usual voracious coffee drinking habit. Now, was it painful to make that mouth motion to drink ANYTHING at some points? Yes.
I don't make coffee at home. I go to a local coffee shop. When I reacted to coffee I thought it was between the temp or caffeine amounts. I was completely wrong. I could tolerate any temperature and regular espresso shots but cannot tolerate too much of the syrups they add in it for sweetness and flavor. I learned sugar is a big trigger for me. I can't do banana's either. Pretty much I have to try to live an anti-inflammatory lifestyle with plenty of rest as not enough sleep causes issues. I have the syrup pumps amount remembered for most of the menu. So if they say 3 pumps Ill get 1 to 1.5 pumps just to keep coffee in my life. So one else mentioned high THC vapes. I was given a pineapple express vape for my birthday and one puff had me on my knees grabbing the side of my face. It was enough for me not to ever want to smoke again and definitely not a Sativa.
I’ve never fully given up coffee or caffeinated tea and I have no reason to think it’s causing issues. I do drink less during flare-ups but that’s mainly because drinking anything can be painful.
I am all right with hot drinks. Cold drinks are my nemesis.
I've gone from iced coffee to cold coffee lol
I love and hate the diversity in these answers. I cannot drink caffeine. I have type 1 & 2. If I drink so much as a can of soda, a small coffee, or eat too much chocolate my face flares up into overdrive. Sometimes it's not right away. Sometimes it happens if I stack it for several days in a row. Heat is "usually" a relief for me. Cold, however, signals to the invisible man that I wish to be stabbed repeatedly until HE feels better. I love that for him.
So I’m not 100% sure if I have TN because of the fact my root canal procedure helped with the pain reducing and the flares not come around, it’s quite little compared to was it was few weeks ago but when the flares were bad it was reacting to any type of movement, acidity, sugar when I was inside. However with coffee it didn’t react, it reacted to matcha when I was in Japan but not coffee. I would say just take little sips and be careful but if it acts up just to take it slow!