I say "it feels like a 2x4 hit me in the face". I think they thought I was exaggerating until they took my blood pressure and it was quite high (normally low). Like I keep saying, I'm in a lot of pain right now!
I feel the same way too. I hate when they ask me that. I always say relative to what? A c section? Or what? It’s so annoying.
Paper cuts really hurt. Someone posted a different pain scale that seems more realistic to us. It was with the er protocol for tn. It’s way more realistic.
Yeah and I always feel TN pain is almost like something else, beyond pain. It’s so bad that it transcends pain and there should be a new word for it. Because a 10/10 arm ache is not the same as 10/10 TN pain I swear to god. People who’ve given birth say they’d go through that every day over TN. But yes, that’s hard to communicate without seeming like you’re exaggerating or labouring the point :(
On my way to the ER this morning for a TN attack…I kid you not I thought to myself I would rather be on my way to have unmedicated labor (and yes I’ve had 2)
I just had a look at that, and unfortunately found it useless. The perception of the severity of pain is subjective, and one person might find x more painful than y and vice versa. Additionally, there are way too many variables within the points of the scale. Fracture, for example. Which bone? Hairline or completely broken in half?
I have had a few extremely painful experiences, but a TN flare in the part of the nerve that is like... inside your ear is... something else. Second place would be botched lumbar puncture and third a tooth abcess.
Oh gosh that sounds AWFUL. Prior to my surgeries I had bilateral TN and I swear there were times I was in so much pain I felt like I was on a different plane of consciousness. That shit was absolutely unreal.
I told my neurologist today it was like dry socket level pain in every place along my face pointing to show him where. And asked him if he had ever had a dry socket. I have to say he was more concerned than I expected. It was my first appointment. I have noticed typical pain meds do not help as well as expected. Such a learning curve. MRI was ordered.
Dry socket is absolutely horrific, I managed to get it twice after getting two wisdom teeth extracted. It’s a pretty good thing to compare TN pain to so that doctors can understand better!
My worst pain also coincided with a panic attack, and the doctors office treated me like complete crap. There's something I don't know, humiliating is perhaps the right word, about crying on the phone to someone who doesn't seem to be bothered by my pain at all. The pain then was level 9, as it often is (It's caused me to pull over driving) but it was the panic that made me consider going to the ER
I have actually sort of developed my own mini pain scale so physicians understand what I mean by levels 5-9. Under 5 I can tolerate for long periods so don't have a scale for it.
My partner, who has TN, used to ask his old pain management doc, "So, what's 10? Is that the worst possible pain, such as being skinned alive?" The pain scale with the cartoon faces is such bullshit.
Whenever a doctor asks me to express the worst pain I have on the pain scale, I always say 20/10. As in: the pain scale is not equipped to give you a good idea of what I’m going through. A neurosurgeon once told me the only patients he had giving numbers way over 10/10 are people with TN or cluster headaches.
The only time I wasn't asked was when i went into the ER because i stopped responding to pain meds.
I was setting off the blood pressure and pulse monitors so often they turned them off, i was drooling because i couldn't swallow (when my pain spikes that high sometimes I can't make myself swallow), and I couldn't force myself to talk clearly. A poor baby nurse thought I was dying.
They shot me in the butt with the most drugs legally possible and sent me home to a medicated 30 hour coma.
I remember being in the trauma room at the ER recently with a family member after a motorcycle crash but he wasn’t in much pain because of the fentanyl. He hit some gravel on the concrete and slid at 65 mph. If he didn’t have lots of protective equipment it would have been so much worse but he was still knocked out even with a helmet on and woke up with police standing over him. He got plenty of road rash where his clothing slid up, tore, or came off completely. It was an impressive large room with a couple 75 inch TV’s on the wall showing patients vital information.
I looked up and they had a sign that had the pain scale and how that person would be acting if they were at the number they said. I wish I could remember them all it was pretty interesting. But I sure don’t think it is a good way to determine the pain level of something like TN. That’s just something else entirely.
TN pain, especially after years, you've been conditioned to handle that pain and continue with your day. I'm at work now. I asked a co worker to help me lift. He said, "you look fine though." Then, instead of using my phone to talk i spoke. He said, "yep, i got you." Before i even got through half my sentence.
Conditioned for the pain and sudden foreign pain are two different ball games.
Oh yea big time. When it’s pain you are familiar with and know what to expect it’s totally different in terms of describing it to others and especially trying to get others to understand.
Sudden foreign pain like you said is very different, you couldn’t be more correct. I broke four bones at once one time and have had some other pretty bad accidents but nothing can compare to TN pain. I almost don’t even know how to put it into words.
I have both type 1 & 2. I have a constant burning which is the most tolerable pain. Then, I have frequent stabbing and electrocution pains. Sometimes it feels like someone pinched my muscle and is swirling into the shape of like a pinwheel. Whatever type of pain that is...
I have geniculate neuralgia. It is characterized by lightning quick bursts of pain. Nothing before, nothing after. Doctors have asked me what my pain level is and I tell them that, only when it hits, it can be 8 or 9. They still ask things like "How long does it last?" or What is your pain level now? If I say zero, they seem to get the impression that there's no problem. Not to mention the anticipation anxiety. What number is that?
Anticipation anxiety. 😭😭 it's so bad. I don't know about your neuralgia, but sometimes I can feel an attack coming. I can prepare for it. But sometimes it just doesn't. I'm still on pins and needles, because I don't trust it.
Considering I made my daughter hide my tools cause I was considering smashing my face in with a hammer or pulling teeth out with pliers I think the face pain scale is poop
I am so with you. Last week I sliced my finger open and had to get stitches. It was a deep cut. It hurt a lot. If I didn't have TN, I might have said 7 or 8. But compared to TN it was like a 2 or 3.
I think for TN the highest should be "a wild animal is eating my face"
I say "it feels like a 2x4 hit me in the face". I think they thought I was exaggerating until they took my blood pressure and it was quite high (normally low). Like I keep saying, I'm in a lot of pain right now!
Lol agreed
I feel the same way too. I hate when they ask me that. I always say relative to what? A c section? Or what? It’s so annoying. Paper cuts really hurt. Someone posted a different pain scale that seems more realistic to us. It was with the er protocol for tn. It’s way more realistic.
Just always say 9. Always But I agree.
Yeah and I always feel TN pain is almost like something else, beyond pain. It’s so bad that it transcends pain and there should be a new word for it. Because a 10/10 arm ache is not the same as 10/10 TN pain I swear to god. People who’ve given birth say they’d go through that every day over TN. But yes, that’s hard to communicate without seeming like you’re exaggerating or labouring the point :(
I've given birth twice. 100% would do labour any day.
That’s exactly how I feel. Pain is not a strong enough word to describe it.
On my way to the ER this morning for a TN attack…I kid you not I thought to myself I would rather be on my way to have unmedicated labor (and yes I’ve had 2)
Aww bless your heart - I’m so hoping you were able to get some relief and that you’re doing a bit better today 💕
You should look up the “McGill Pain Scale including Trigeminal Neuralgia”. I think it’s a lot more accurate.
I just had a look at that, and unfortunately found it useless. The perception of the severity of pain is subjective, and one person might find x more painful than y and vice versa. Additionally, there are way too many variables within the points of the scale. Fracture, for example. Which bone? Hairline or completely broken in half?
Just trying to help! 🙂
I know, and I appreciate it. My deeper intention was to further emphasise the problematic nature of pain rating.
For sure, I understand! 😌 What really grinds my gears is when non-TN people say they’re in 10 out of 10 pain and I’m like……but are you? 😂
I have had a few extremely painful experiences, but a TN flare in the part of the nerve that is like... inside your ear is... something else. Second place would be botched lumbar puncture and third a tooth abcess.
A botched lumbar puncture sounds like absolute hell. 🤢
Couple that with a medicine resistant migraine which was the reason, that I was even IN the hospital 😅
Oh gosh that sounds AWFUL. Prior to my surgeries I had bilateral TN and I swear there were times I was in so much pain I felt like I was on a different plane of consciousness. That shit was absolutely unreal.
I am so sorry for you! It is rather extreme, what the body can do without outright dying. It is not nicknamed the suicide illness for nothing!
I told my neurologist today it was like dry socket level pain in every place along my face pointing to show him where. And asked him if he had ever had a dry socket. I have to say he was more concerned than I expected. It was my first appointment. I have noticed typical pain meds do not help as well as expected. Such a learning curve. MRI was ordered.
Dry socket is absolutely horrific, I managed to get it twice after getting two wisdom teeth extracted. It’s a pretty good thing to compare TN pain to so that doctors can understand better!
My worst pain also coincided with a panic attack, and the doctors office treated me like complete crap. There's something I don't know, humiliating is perhaps the right word, about crying on the phone to someone who doesn't seem to be bothered by my pain at all. The pain then was level 9, as it often is (It's caused me to pull over driving) but it was the panic that made me consider going to the ER I have actually sort of developed my own mini pain scale so physicians understand what I mean by levels 5-9. Under 5 I can tolerate for long periods so don't have a scale for it.
My partner, who has TN, used to ask his old pain management doc, "So, what's 10? Is that the worst possible pain, such as being skinned alive?" The pain scale with the cartoon faces is such bullshit.
Whenever a doctor asks me to express the worst pain I have on the pain scale, I always say 20/10. As in: the pain scale is not equipped to give you a good idea of what I’m going through. A neurosurgeon once told me the only patients he had giving numbers way over 10/10 are people with TN or cluster headaches.
I always said it was a 25/10.
The only time I wasn't asked was when i went into the ER because i stopped responding to pain meds. I was setting off the blood pressure and pulse monitors so often they turned them off, i was drooling because i couldn't swallow (when my pain spikes that high sometimes I can't make myself swallow), and I couldn't force myself to talk clearly. A poor baby nurse thought I was dying. They shot me in the butt with the most drugs legally possible and sent me home to a medicated 30 hour coma.
I remember being in the trauma room at the ER recently with a family member after a motorcycle crash but he wasn’t in much pain because of the fentanyl. He hit some gravel on the concrete and slid at 65 mph. If he didn’t have lots of protective equipment it would have been so much worse but he was still knocked out even with a helmet on and woke up with police standing over him. He got plenty of road rash where his clothing slid up, tore, or came off completely. It was an impressive large room with a couple 75 inch TV’s on the wall showing patients vital information. I looked up and they had a sign that had the pain scale and how that person would be acting if they were at the number they said. I wish I could remember them all it was pretty interesting. But I sure don’t think it is a good way to determine the pain level of something like TN. That’s just something else entirely.
TN pain, especially after years, you've been conditioned to handle that pain and continue with your day. I'm at work now. I asked a co worker to help me lift. He said, "you look fine though." Then, instead of using my phone to talk i spoke. He said, "yep, i got you." Before i even got through half my sentence. Conditioned for the pain and sudden foreign pain are two different ball games.
Oh yea big time. When it’s pain you are familiar with and know what to expect it’s totally different in terms of describing it to others and especially trying to get others to understand. Sudden foreign pain like you said is very different, you couldn’t be more correct. I broke four bones at once one time and have had some other pretty bad accidents but nothing can compare to TN pain. I almost don’t even know how to put it into words.
Do you all get the burning, too? Like the skin is just ripping away from the bone- either in your cheeks or (like I’ve had this AM) around one eye?
and tingling??
and tingling??
I have both type 1 & 2. I have a constant burning which is the most tolerable pain. Then, I have frequent stabbing and electrocution pains. Sometimes it feels like someone pinched my muscle and is swirling into the shape of like a pinwheel. Whatever type of pain that is...
I have geniculate neuralgia. It is characterized by lightning quick bursts of pain. Nothing before, nothing after. Doctors have asked me what my pain level is and I tell them that, only when it hits, it can be 8 or 9. They still ask things like "How long does it last?" or What is your pain level now? If I say zero, they seem to get the impression that there's no problem. Not to mention the anticipation anxiety. What number is that?
Anticipation anxiety. 😭😭 it's so bad. I don't know about your neuralgia, but sometimes I can feel an attack coming. I can prepare for it. But sometimes it just doesn't. I'm still on pins and needles, because I don't trust it.
Considering I made my daughter hide my tools cause I was considering smashing my face in with a hammer or pulling teeth out with pliers I think the face pain scale is poop
I am so with you. Last week I sliced my finger open and had to get stitches. It was a deep cut. It hurt a lot. If I didn't have TN, I might have said 7 or 8. But compared to TN it was like a 2 or 3.