Hi all, after many visita to different doctors and specialists, today i’ve been sort of diagnosed with tn2 or atypical facial pain. My pain is in/behind my left eye, left nosebridge en under my eye. I have a non stop feeling of pressure and my left temple hurts most of the time. I am getting an mri to rule things out. Finally after months of agony and fear.
My neurologist prescribed me carbamazapine. I am hopefull i can get some relief.
I was wondering if i could read some positive experiences with this. And also if people gained weight? I already gained weight because i went from very active, bodybuilding lifestyle, to almost no activity, but an occasional walk around the block.
It has been some time since I have needed meds but carbamazepine worked well for me and I would definitely use it again.
I was cautioned not to drive the first week and it did make me dizzy and unsteady the first few days. I am a lightweight for meds so I often do not need a full dose for pain management so I started at half dose twice a day and stayed there.
My left side was also affected. It started more in my upper jaw so I made a couple trips to the dentist with tooth pain thinking that was the problem. I also remember making pureed food when it hurt too much to chew. The pain also traveled around my eye. It felt like a pulling and I could feel my eye movement.
Heated rice packs were soothing when the pain was in a flare. While I can use OTC when I feel some mild irritation at present, a cold wind is a trigger for mine so I am careful even now to protect myself.
Thank you so much! Glad to hear you don’t need medication now, but that it worked for you when you needed it. Do you remember how fast it worked.
My pain and pressure feeling are still very present. But i know i need to be a bit more patient.
I don’t remember how long it took though I did sometimes take two ibuprofen when pain was breaking through while I was on it since I preferred not to increase dosage.
Have you tried anything topical? I recall some using lidocaine patches for relief…
Yes i tried lidocaine cream and nose spray. The nose spray made my nose burn for hours from the inside, so it only made it worse. Never again hahaha.
The cream does not do anything. I feel like the pain is to deep for anything topical.
Ibuprofen or any otc painmed also does not help unfortunately.
Hi I’m glad I read your post. So I’ve had TN for a very long time. Finally my doctor via a doctor in India gave me lacosamide. You can only take up to 400 mg a day I’m on 300.
It works really well. I was taking carbamazepine for a long time it really didn’t work but the amount that I was taking gave me low sodium. It was a terrible experience and had to go to the hospital.
So the lacosimide is working. I have stuff sinuses on my left side which gives me flickers in my left eye my doctor prescribed me three kinds of nasal sprays. I was on I protropium bromide and flucortizone propionate I just spoke to my doctor couple days ago told her about my episode and she gave azelastine hci
Seems to help with the stopped up sinus.
I also have pain in my left temporal lobe on the side of my head. My doctor prescribed me b u t a l b - a c e t a m i n - c a f f 50 -325- 40 you can only get 30 at a time. So I only take them when I absolutely need it with the lacosamide you can’t have caffeine so I don’t abuse that drug. I had an MRI for the pain in my left side of my head. What they said that I have a gray Mass in my front temporal load that could possibly mean a a small stroke. I argued back and said I fell from tn strikes a lot so maybe that’s why, doctor didn’t comment. The spray seem to help with the pain in the left front temporal lobe. I have to take those sprays three times a day. Everybody’s different I understand that but I’m just giving you some ideas that you can run past your doctor instead of putting you through some serious surgeries that may not help.
If you read this already I forgot to add when I first started getting trigeminal neuralgia my doctor told me to get some oral anesthetic tooth gel. I don’t use it on my teeth anymore but I put it on my eyebrow not a lot and I massage my eyebrow and around my nose and a little bit under my eye not on the eye and it helps. And also the pain on the left side of my face I have arthritis so my doctor prescribes me diclofenac sodium gel… So anyway I use a little bit and I rub it from my from temple back on the left side of my face where the pain is and it does help. If you can’t get it through insurance they sell it at the store. You only need a little bit. Hope this helps
Thanks for the reply. I’m sorry you have to deal with this for so long.
I am pretty new to this, so i am going to stick with carbamazepine for now i was hoping to get some positive story’s about the drug (and people who did not gain weight.)
Hi there, I also have pain behind my left eye, the orbital rim and down the side of my nose, then the whole stripe across to my ear. I’ve had it for more than ten years. Initially, I found the side effects of Tegretol too much to still be able to work, so tried multiple other meds, most of all sticking to Gabapentin, which really made me gain weight. I had a MVD which helped with the type 1 pain, but not the type 2 pain (my surgeon forewarned me of that). Years after the surgery I gave Tegretol another chance after weaning off Gabapentin. I did lose weight, 20 lbs after off of Gabapentin, but I have slowly gained it back, I think because of bad diet choices and lack of exercise. Anyhow, the second time around I found the side effects of Tegretol easier to deal with as I have retired and then built up a resistance to. I still take a low dose though compared to many. A couple of years ago I added low dose Baclofen to my regime and found that it had fewer side effects for me and surprisingly helped with the TN pain. Hope my answer helps. Definitely get a 3-D MRI for an official diagnosis.
Thank you so much for sharing your experiences with the meds and the condition! Happy you found a med regime that helped!
Yes i have had my mri’s yesterday. With and without contrast and also from the eye and brain separately. Now i have to be patient haha.
I take carbamazapine/tegretol for a week now. I am now on 400. (2x200) It think it may start to help a little now. Especially with the shooting pains.
Luckily i have no side effects what so ever. I sleep a bit more. But i can still work and work-out if the pain lets me. So i am hopefull
I am 38 now, so i have a lot of working years ahead of me. I love working and i love to be active all day long, so i hope the side effects stay at this level.
i was hoping to get some positive story’s about the drug (and people who did not gain weight.)