I’m confused about the different kinds of facial pain. This is what I have: bilateral, 24/7 (though I can sleep with sleep medication), burning and tightness from my forehead to my chin. I do not have any stabbing pain. Is this Atypical Face Pain, TN2, Idiopathic Face Pain or something else? I read very few posts from people that have what I have. I have had it for 4 years. Until about a week ago it has been controlled by 1200 mg a day of Gabapentin. I have no idea why the medication stopped working. My doctor addressed the issue by saying there are many kinds of facial pain and left it at that.
There are so many different types of facial pain. Can I suggest, if you haven’t already done so, reading the book ‘Striking Back’ (available on Amazon). It helps explain a lot. Unfortunately meds do seem to stop working so well after a while. Again there are quite a few different ones to try. Hope this helps.
Striking Back is kind of the Bible for face pain.
I hope you and your doctor found something that works.I just mentioned Dr.Miriam Grushka to someone else.She has a web page.She works a lot with burning mouth and clonazepam…Maybe there will be some info there.I found the clonazepam really helped with the burning.
Thank you for responding. I will look at Dr. Grushka’s web page. My doctor upped my Gabapentin to 1800 mg per day. I see him again in two weeks. He did blood work and didn’t find anything that could be the cause of the face pain. I was on 1 mg of Lorazepam twice a day but he doesn’t like using benzos long term so I’m no longer taking it. The pain came back about a week after I stopped the Lorazepam so now I’m wondering the Lorazepam was helping to control the burning. He won’t prescribed Lorazepam any more so am hoping the additional Gabapentin will work.
You might want to look into topical clonazepam. That way, only miniscule amounts will get into your blood system. It has been a godsend for me when it comes to the burning pain and some of the tightness and numbness. (Fortunately, since I quit the opioids and other painkillers, I don’t have much of that anymore). Though it doesn’t seem to help much with aching/itching, which seems to be a bit more recalcitrant. I also felt relief with systemic benzodiazepines of all kinds, though taking them more than once in a while is not a good idea (withdrawal can be brutal). Good luck, I think there is a very good chance you can get relief from this without too much trouble.
Oh Ziggy ,I just want to give you a big hug.HOPE
Thank you
My problem(LOL problemSSSSS)is I can’t find a doctor to take ownership of this malady.
And I can’t write my own prescriptions.
I wish i could go to somebody and say let’s try this and they would believe me.They want to ask everyone and everyone shakes their head and says look it up in your manual if you are worried about complications.
I will be going to a new specialist dentist in a couple weeks and will ask for the liquid clonazepam.That sounds ideal-right now I am taking a ketamine based mouth rub so my doctor will probably agree if I switch/Thanks
Before I started getting some good drugs I was using old lorazepams/This pain is an anything that works pain.I found they helped somewhat and would never get rid of them.
Dr.Grushka really ups the clonazepam.
Sorry I did not respond to you earlier.I did not see you.
I hope the doctor slowly titrated you off the ativan .
Hugs
Thanks for replying. I’m not sure what topical clonazepam is. Is it a cream that you put on your face? I tried to look it up on the Internet but all that I could find was for burning mouth syndrome and it was something you put in your mouth. I’m not sure my doctor would be willing to prescribe anything with clonazepam but if it is cream and doesn’t absorb too much in your system I would ask him. I know he would not prescribe clonazepam oral.
ellen5
I’m beginning to think my problem might be that I didn’t titrate off the Lorazepam. I thought it would be ok to go off it fairly quickly because I am titrating off of Temazepam (it was for sleep) so I still have a benzo in my system. I’ve been off the Lorazepam for about 3 weeks now. My doctor doesn’t think you have to go so slow (10% cut every 7 days) so he didn’t have any problem with me going off the Lorazepam so quickly. He thinks I should be able to go off the Temazepam in 2 weeks instead of 10 weeks.
Pacey, be really careful getting off benzos! I’ve got quite a bit of experience with them, for better or worse, and getting off can really send your body into a tailspin. The smaller the cuts and the slower you can go, will really make the difference. Not sure how long you’ve been on them, but if it is over 4 months you could have quite a strong dependence and need to go very slowly. You can do a substitution, but you should probably up the remaining benzo, otherwise it is a severe cut and can really shock the system. Temazepam has a short half-life, so I found it necessary to dose just a bit during the day to avoid withdrawal effects. Withdrawal could certainly kick up neuropathy!
Regarding topical clonazepam–I read about this on the net, and my doctor was very helpful in prescribing the pills I needed (he had heard of it). He wanted me to dissolve the pill in a bit of water (like one teaspoon) and swish it in my mouth 3 x per day. Since the burning areas were quite distinct, I ended up making my own solution and swabbing the areas with a Q-tip–1/2 tsp water, 1/2 tsp heavy cream, and one .5mg pill (the orange ones dissolve very nicely, others might need crushing and time). The heavy cream gives it a bit of body so it sticks and spreads better, but of course I have to keep it in the fridge (coolness is nice).
I’m sure a compounding pharmacy could make up a cream for you, but I’m also sure you could experiment and make up your own with a plain lotion of some sort. That way you could adjust the concentration to what works best, and even test if it works at all. I hate oral clonazepam, diazepam actually works much better for nerve stuff IMO, but the topical clonazepam works great!
Thanks so much for the information. I think I will try a little Temazepam during the day to see if that will help. I’m thinking more and more that coming off the Lorazepam so fast is what made the facial pain worse. I do have an opiate which doesn’t help my facial pain but does help the pain in the back of my legs (also neuropathic pain) which somehow makes the facial pain more tolerable. The problem is I don’t like taking the opiate. I only take half during the day once in a while. I take half at night more often because the pain in my legs prevents me from sleeping. My doctor is very anti-benzo (most docs in the area I live in are) so he will not give me any clonazepam pills. I thought maybe if it already came in a cream (not having to have it compounded) he might be willing to have me try that but since that is not the case I won’t be able to try it. I don’t know if the Temazepam will work as a substitute for the Clonazepam but I will try using it the same way you use the Clonazepam.
Thank you again ziggy for the helpful information.
I just wanted to point out again that my burning pain almost completely disappeared when I managed to quit the opioids. I was only taking 1/2 to 1 total Percocet every 24 hours, not like total relief, but it made the pain bearable and helped me sleep. It was very difficult to get off, as I had no other good options for pain, but I used Valium a few times when the pain got pretty bad, and haven’t had really bad days for quite a while. Studies are coming out that prove opioids do make chronic pain worse, unfortunately. I do have other types of pain that drive me batty, but fortunately they settle down at night and allow me to sleep for the most part, unlike the burning/numbness type pain.
If you’re not getting adequate relief from 1800 mg/day of Neurontin, then the two other mainstream anti-seizure drugs used in chronic face pain are Tegretol and Trileptal. The latter is reputed to have somewhat less pronounced side effects.
The terms “Atypical Face Pain” or “Idiopathic Facepain” are considered equivalent and not particularly helpful. Idiopathic is basically “of unknown origins”. “Atypical Trigeminal Neuralgia”, on the other hand, is a steady burning pain that tends to be 24-7, and at a somewhat lesser intensity than the electric shock pain of “typical” TN. Any form of face pain that isn’t attributable to TMJ Disorder, Eagle Syndrome, or Bell’s Palsy may be referred to as “Trigeminal Neuropathic Pain”. If the anti-seizure meds don’t help with your symptoms, then another avenue is the tri-cyclic anti-depressant meds like Amitriptyline and Nortriptyline. I can confirm the comments of others that although the Benzo drugs are sometimes used in this variety of pain, they can be hard to get off of and they can interact dangerously with certain other meds, particularly opioids.
Be advised by your primary care provider on drugs to try and observe. But by all means purchase and read “Striking Back”. It’s rightly considered authoritative and well grounded information.
Thank you very much for responding. It is very helpful for me to know what kind of facial pain I have because when I read posts and information about facial pain I was having difficulty determining how they relate to what I have because people don’t always mention the symptoms; they just say TN1 or TN2, etc. So now I know that I have ATN.
I just started the 1800 mg of Gabapentin on Wednesday and see my doctor again in a week or so. I will mention the other medications to him if the Gabapentin doesn’t work. He will not prescribe benzos and I have had two bad experiences with them so I am comfortable with that.
Can you please tell me if there are any statistics that show that there are some people that have ATN can eventually go off all meds and no longer have pain? I am thankful that there is a place where people can get information and support but it is also sometimes discouraging to read the problems people are having.
Hi Pacey
I love this site,too and sometimes I go to the complimentary medicines section just so I can still see the hope that people carry.
Just from being on the site a short while,I am seeing that ,to me,it seems that when people go in remission or something worked they leave the site.So there are us that are trying to find what works.
Good luck on the gabapentin.I thought the trileptal would be my saving med but even at a tiny dose it makes me sick.Gabapentin I can tolerate at low doses.
Thanks for telling me about the complimentary medicines section. I read some of the posts. I’m sorry the Trileptal didn’t work for you. I’m hoping that the additional Gabapentin works for me and I don’t have to try another drug. I think you are right that once people find something that works or go into remission they don’t come on the site anymore.