I have a teary eye and runny nose only on one side and only during an attack. Lately I have had these sudden, extreme bursts of pain at the back on my tongue that last anywhere from 30 seconds to about a minute. They are VERY intense. Sometimes I can hardly breath through these attacks. When this happens it causes the teary eye and runny nose on that side (I am bilateral and this has happened on both sides). Sometimes along with all of that it will end with me sneezing. Yep, painful sneezing. TN is so strange.
I am not stuffed up any other time. I don't have allergies. It is TN.
I also used to get the teary eye and runny nose with flares around my eye and nose. That I can understand a bit more then this. I have heard of these things happening to other people along with redness or swelling on the affected side. I just don't quite get the sequence of what is happening here. How does the nerve cause that?
The reddening of the skin that some people experience is suggestive of complex regional pain syndrome (previously known as reflex sympathetic dystrophy). It rarely occurs in the orofacial region and is more common in one of the limbs. Congestion and lacrimation is suggestive of increased parasympathetic nervous system activity, which could fit CRPS since part of the pathophysiology includes reduced sympathetic nervous system outflow. This is all guess-work on my part and is best discussed with your doctor.
I don't know much about CRPS but I did some reading. There isn't much information about it occurring in the face, head and neck. What there was did sound much like ATN but it talked a lot about CRPS being due to injury or trauma.
A lot of sights do list the redness, swelling, tearing and runny nose under symptoms of Trigeminal Neuralgia. I would say the redness and swelling are fairly common from the people I have talked to but the tearing and runny nose are not very common amongst us.
I also know that SUNCT or SUNA is considered to be one of the trigeminal autonomic cephalgias. I don't really know what that means (lol) but it obviously has to do with the trigeminal nerve? Also I have had migraine and cluster headache symptoms with pain around my eye but this starts in my mouth?
I think I need to be rewired. lol
I have been referred to a pain clinic so I am waiting for that to go through. There is no point in talking to my GP about this weirdness. I just thought someone would know something about what was happening
None of us really know what's happening, but I suspect you're suffering from autonomic dysregulation triggered by these attacks. It's similar to what happens with CRPS.
There was a paper I read that argued that injury to the trigeminal nerve (eg through dental insult) can result in CRPS, but often without autonomic dysregulation symptoms. My GP is clueless about this as well as my family dentist. We're just special!
Pain clinics are usually run by anaesthesiologists, sometimes experienced GPs. They serve to help restore function and decrease pain. They're not the best place to get diagnosed. What's the wait time for you? It takes ages to get into one here.
That’s the frustrating thing…is that no one really knows right? Even specialists, if you can find one.
I don’t know yet how long the referral to the pain clinic will take. I got a personal recommendation from a friend so I am hoping that will hurry things along but who knows. I lost my neuro so I am back to square one. I am having a pretty horrible time right now. My med is obviously NOT helping and I just have my GP. She is pretty helpful if I know what I want but I don’t know what to do at this point. Should I ask to try an anti-convulsant. I’ve never taken them. I have just taken Amitriptyline and now nortriptyline.
Carbamazepine has worked well for me, but a lot of other folks with atypical pain don't find it helpful. If your GP prescribes it, you would need regular blood work to monitor your liver and blood cells. Gabapentin is another anticonvulsant. It is safer and doesn't require monitoring. I didn't find it helpful at all. Pregabalin is a gabapentin derivative that is more expensive, but it has better absorption at higher doses and can be taken twice a day instead of three times a day. Oxcarbazepine is a carbamazepine derivative that is more expensive, but thought to be better tolerated (it seems to be used in the states more than in Canada).
If you've only taken the TCAs, there are still a lot of meds in the arsenal to go through.
Thanks toothache. I had a really good few months. This pain really drives you mental. When it isn’t bad its like what’s the big deal but when it freaks out all bets are off. I really feel like I am being tortured from the inside out!
I have been lucky with the tricyclics and could still increase. But once I get up to 75 mgs on the nortriptyline it starts to make me really jumpy. I am going to talk to my GP about the meds you described above. I know she will offer Lyrica first but I tried that just for a few days and couldn’t handle it. And from what I have seen it doesn’t seem like it helps much with this. My mom has been on both tegretol and neurontin. I do believe neurontin helped with her TN so maybe that is where I will start.
Hope you are doing well these days and your pain is leaving you be
I had a flare up over the holidays that necessitated increasing the carbamazepine, but it's feeling better now. I've pretty much tried every drug under the sun at this point and most of the non-drug treatments. Feel free to message me if you want to chat. I hope your file gets pushed to the top of the pile! The Canadian system of waiting and more waiting is quite frustrating, but on the flip side, at least we don't have tonnes of medical debt.
I am glad that you are out of pain again. And I hope it stays that way for a very long time. Winters have proven to be horrendous for me. Not sure what excuse you have living in the beautiful BC! Kidding. Actually our winter has been amazingly mild but my face still doesn't like it apparently. I am thankful to live in Canada. I cannot imagine having the stress of medical bills on top of everything else. Medication is enough to have to pay for.
I will message you. It has been quite awhile since we chatted. Thanks again for your input and we will talk soon :)
How long and how many miligrams of carbamazepine did take to help you
Thanks
Toothache said:
I had a flare up over the holidays that necessitated increasing the carbamazepine, but it's feeling better now. I've pretty much tried every drug under the sun at this point and most of the non-drug treatments. Feel free to message me if you want to chat. I hope your file gets pushed to the top of the pile! The Canadian system of waiting and more waiting is quite frustrating, but on the flip side, at least we don't have tonnes of medical debt.
I’ve been on tegretol for over three years and it’s helped the most out of everything I’ve tried. I noticed a huge difference a couple of hours after my first dose. I started at 100mg twice a day and I’m now taking 300mg twice a day.
Hope this helps!
mare said:
How long and how many miligrams of carbamazepine did take to help you
Thanks
Toothache said:
I had a flare up over the holidays that necessitated increasing the carbamazepine, but it’s feeling better now. I’ve pretty much tried every drug under the sun at this point and most of the non-drug treatments. Feel free to message me if you want to chat. I hope your file gets pushed to the top of the pile! The Canadian system of waiting and more waiting is quite frustrating, but on the flip side, at least we don’t have tonnes of medical debt.
