Hi again!
I would like to know what are your triggers ? What is likely to start an attack? I know for me it is definitely cold foods. The pain was atrocious when I last ate ice cream. When I drank cold liquids too and eat food straight out of the fridge. Sadly, I completely banned cold foods from my life for now. I have had an attack last week simply by brushing my teeth too;-( cant really stop brushing my teeth, yer?! Please share your experiences. Many thanks
H Virginie,
Hot and cold seem to be common triggers, interesting you say brushing your teeth sets it off. I personally get TN and gargle with cepacol before I brush. Helps keep the disruption to a minimum for me. Might be worth a try. Does anyone else have other triggers and how do you manage to minimise their impacts?
Definitely cold. I get strange looks in restaurants when I ask for luke-warm water to drink.
Sometimes sour or spicy hot foods can trigger. Fizzy beverages trigger. Food that is bumpy in a sharp way, like granola, or just sharp, like potato chips (crisps) are also a trigger.
I figured out after four years that I could put a small bit of chip (crisp) in my mouth and just let it dissolve, no chewing, before swallowing. Not something I normally eat, but who doesn’t crave chips (crisps) sometimes? Chewing can trigger, I take very small bites, so I don’t have to chew for long and definitely no gum.
Singing or the stick your tongue out and say ‘Ahhh’ are both horrible triggers for me. That was one of the tests they did pre-op. The Dr had me stick out my tongue and say ‘Ahhh’ then he grabbed my tongue and held on. I had tears rolling down my face and the pain lasted all through the night and up until my surgery the next morning level 10 the whole time.
Sadly, speaking is also a trigger.
Brushing your teeth sounds like it could possibly be the 5th Cranial Nerve, TN.
Hi hmschmom - I could have written that! This are exactly my triggers too. Fizzy drinks are a no no now.. Thank you x
hmschmom said:
Definitely cold. I get strange looks in restaurants when I ask for luke-warm water to drink.
Sometimes sour or spicy hot foods can trigger. Fizzy beverages trigger. Food that is bumpy in a sharp way, like granola, or just sharp, like potato chips (crisps) are also a trigger.
I figured out after four years that I could put a small bit of chip (crisp) in my mouth and just let it dissolve, no chewing, before swallowing. Not something I normally eat, but who doesn't crave chips (crisps) sometimes? Chewing can trigger, I take very small bites, so I don't have to chew for long and definitely no gum.
Singing or the stick your tongue out and say 'Ahhh' are both horrible triggers for me. That was one of the tests they did pre-op. The Dr had me stick out my tongue and say 'Ahhh' then he grabbed my tongue and held on. I had tears rolling down my face and the pain lasted all through the night and up until my surgery the next morning level 10 the whole time.
Sadly, speaking is also a trigger.
Brushing your teeth sounds like it could possibly be the 5th Cranial Nerve, TN.
Thanks Smiley. Will give it a go at this stage anything is worth a try! Many thanks x
Smiley said:
H Virginie,
Hot and cold seem to be common triggers, interesting you say brushing your teeth sets it off. I personally get TN and gargle with cepacol before I brush. Helps keep the disruption to a minimum for me. Might be worth a try. Does anyone else have other triggers and how do you manage to minimise their impacts?
For me it's:
Speaking, (lost my voice for 2 years)
Eating (rough foods worst, I did an all liquid diet for 2 years prior to finding medications),
Temperature changes (cold weather and even stepping out of showers can be awful)
Sticking out my tongue
Bumping the area under my chin, near the tongue
Apprehension (effects both nervous system and increase tension in my throat, most doctors choose to care exclusively about this symptom, unfortunately)
On medication I regained a lot more of my voice, though it's still painful to speak and it gets worse in between doses. I eat solid foods, and just in general do a lot more.
Bumping the area under my chin, near the tongue
Thank you for that. I have read that there can be physical trigger points, but haven’t really heard anyone else speak about them.
During my visit to my primary care Dr when this first started, she asked where I felt the ‘ball’ in my throat. I pointed to the area under my jaw at the base of the throat where you’ll often be checked for swollen lymph nodes when sick. When she touched the area my husband says I began screaming and freaked her/them out so much she called for an ambulance. My next memory is in the back of the ambulance hurtling toward the hospital convinced I was going to die if I couldn’t see my husband driving behind us. It has never been that bad since, but I and my Dr are very careful of the area.
@hmschmom,
Really? I haven't received this diagnosis yet, but I have a lot of the symptoms. One of the friendlier doctors I've seen (a neurologist) said it was very possible and in his opinion the most likely, but because it can be idiopathic he wasn't comfortable giving a definitive diagnosis in the event he was wrong. He wasn't an expert at all in pain disorders and highly suggested I go to someone with more authority.
I'm going to be seeing some 'higher tier' specialists soon and hope they give me something to work with.
But yeah, if the area is bumped, particularly when already 'agitated' it sends a jolt of electric shock pain. For me, the very act of speaking does similar. Prior to it developing, I was a singer and thought maybe, I'd destroyed my voice. But when I got on medications I could touch the area and speak and sing more so I''ve come to believe it might be my voice 'vibrating' the trigger point.
As for ambulance ride and thinking you're dying, I've had similar experiences. During the first episode so agonizingly painful, I couldn't believe it was even happening, and became incredibly distraught. It was beyond my comprehension. I've had maybe three attacks that severe in the past 6 years where it was so painful, it's like you're losing your mind. At the ER people have seen how I was reacting to the pain, and labeled the issue a panic attack. And yeah, I kind of am having a panic attack when the pain is that severe.PS, sorry for the itallics. Don't know where they came from.
Hi Virginie, yes definitely the COLD - whether that's cold food or drink, or a cold wind that whips up my nose and down the back of my throat. Unfortunately I live in the UK and it's cold A LOT, so I literally live with a wind scarf up over my nose, ridiculous but necessary. Brushing my teeth has happened too so I changed toothpaste to a less minty one and use mouth wash as that doesn't set it off.
HOT helps me! I eat lots of spicy foods, jalapeño peppers have become my best friend as well as spicy crisps (not good for the waistline though!). I know it's different for everyone and some will say that hot is a trigger! You'll find over time that you get to know your own triggers, though it's always nice to know others are going through the same thing.
Here's a list of my triggers:
COLD - ANY type - cold water, ice, ice cream, wind
Fizzy drinks
Vinegar
Certain toothpastes
Onion
Pickles
Alcohol
Singing
Talking too much (I'm a teacher...go figure!)
Swallowing sharp things - crispy chips, crisps (have to suck them first), boiled sweets
Hitting the side of my throat accidentally
and probably more I can't think of right now!
Good luck, keep checking in here, as I said knowing other people are going through the same thing stop you wondering if you're the only freak on the planet!!!
x
Granadam, Interesting you say hot helps - some of the guys on the TN site have been discussing capsicum derivatives as a treatment. I'll see if I can find them and post over here.. :)
Hi Granadam,
Your triggers sound very much like mine. except alcohol and onions ( yet anyway!)
I found that hot does not set it off either - I can still have my coffee ( thank goodness for that) and spicy food seem ok too.
Cold is my biggest fear & enemy at the moment - no cold beverage, no ice creams, nothing out of the fridge/freezer. It’s hard cause it’s summer here in Australia and it does get really hot…but I can live with that just to avoid the pain. I had an attack because of toothpaste too - a really minty one.
I do find a lot of comfort being in this group, reading people’s story and sharing mine. I have been feeling really down the last few weeks. My world has turned upside down so suddenly. But I hang it there, I have two young children to love and to look after. I have to get better and learn to live with this.
Thank you Granadam, I wish you all the best for your surgery in February. Please keep us posted x
Hi Virginie, yes definitely the COLD - whether that's cold food or drink, or a cold wind that whips up my nose and down the back of my throat. Unfortunately I live in the UK and it's cold A LOT, so I literally live with a wind scarf up over my nose, ridiculous but necessary. Brushing my teeth has happened too so I changed toothpaste to a less minty one and use mouth wash as that doesn't set it off.
HOT helps me! I eat lots of spicy foods, jalapeño peppers have become my best friend as well as spicy crisps (not good for the waistline though!). I know it's different for everyone and some will say that hot is a trigger! You'll find over time that you get to know your own triggers, though it's always nice to know others are going through the same thing.
Here's a list of my triggers:
COLD - ANY type - cold water, ice, ice cream, wind
Fizzy drinks
Vinegar
Certain toothpastes
Onion
Pickles
Alcohol
Singing
Talking too much (I'm a teacher...go figure!)
Swallowing sharp things - crispy chips, crisps (have to suck them first), boiled sweets
Hitting the side of my throat accidentally
and probably more I can't think of right now!
Good luck, keep checking in here, as I said knowing other people are going through the same thing stop you wondering if you're the only freak on the planet!!!
x
I'm not entirely sure. I know things that hurt when I'm dealing with it - there are times it is quiet (ahhh!) and times, like right now, when it is rearing its ugly head. The first thing I ever noticed though, long before I had this dx (and actually, the doctor has yet to say the words to me, but I know from symptoms and what he changed my meds to after I had clearer symptoms), was - okay, this is weird, and I don't know if others will have this, too - but pain in my ear (left only) when I breath. Inhale, specifically. I didn't make the connection to the throat (feels more like a mild sore throat on one side) until this fall.
But you really can't stop breathing, so I just deal with the pain for now. Because, what else can I do?
I do think cold air (wind, especially) bothers it (I wear my balaclava if I need to, even if I look dorky), and maybe sometimes when I chew on that side.
Has anyone noticed stress as a trigger? This week hasn't been too bad at all, but today is awful (and doesn't it figure right as I'm trying to get everything ready and done before our big family Christmas Eve gathering tomorrow). I can't think of anything that I may have done to make it worse than usual. I guess it's possible that it's just cycling through good days and bad days. I'm trying so hard to make sense of all this, but it seems that there's no sense to be made!
I don’t know, I’ve watched for stress being a trigger for years and have never noticed it. I started keeping a daily log of my symptoms and they really do seem to just go up and down.
It’s been a couple of years (MVD fixed it). I would have stinging stabs at first, it would be momentary. Only a fraction of a second.
But at its worst, laughing, eating, swallowing, brushing teeth near the left tonsil, stretching, yawning, sneezing, coughing, wiggling my tongue left to right once or twice, even washing my hair could trigger the continuous pain which would then last 5-10 minutes till the nerve was exhausted. Then, nothing for maybe 3 minutes, then it could happen again. That short interval would be the only time I could eat without pain. But the nerve recharged very quickly.
I’m so sorry you have this problem. Good luck in your journey, and I wish you pain free days ahead.
Hi Suzymc44 - Stress definitely one of mine, and also over doing things. This seems to be common across some of the other neuralgias too. Learning to be zen definitely helps with this. :) Merry Christmas.
Learning to be zen...I've been trying to figure that out for years! ;o) Honestly though, I have been doing some easy yoga and I do think it helps.
Hi. I’m no expert but after being diagnosed but not suffering, a gulp from a cold cola gave me such a shocking pain it put me on my knees. So swallowing cold drinks are out. Another trigger seems to be anything that jerks or bounces my head - like running up or down stairs. Exited or impulsive speech also triggers it with me It’s interesting to see others affected by stress. Actively relaxing helps me so they may be right.
Does anyone notice rainy weather starts a flare? High levels of stress is definitely one of my triggers. My daughter left for college recently and my stress level went through the roof. I had been doing great on my Meds and now I have horrible break through pain in my throat. Good luck!
You Are not alone with having those triggers. With many it is cold and spicy foods also. I have noticed that sometime something warm like tea or hot chocolate will help somewhat, not sure if anyone else has noticed this? Maybe this will help! Good Luck!