Hi everyone, my name is Tamara I am 26, so as I am approaching my first full month of ATN (that is an anniversary I will not be celebrating!), still no pain relief. I had some trouble with diagnosis as it seems a lot of you have had. The closest I have gotten to is atypical facial pain. My faith in the medical community has totally been shattered by doctors who have no idea whats going on, who have no compassion and seems like they generally don't care (although Im in super pain so a tiny bit biased maybe) no cause/no cure/no surgery/chronic= what a cruel nightmare. anyway I was put on tegretol and up-ed to 600mg these past two weeks. It worked for the first 11 days but then slowly the pain started to come back until I had an attack tonight that left me sobbing on the floor. One neurologist recommended Cymbalta. I dont know if I should just start that tomorrow or do you have any experience with other medications that are better to start with? Lyrica? Gabapentin? It's 3am and cant get any sleep from the pain. Im still in total shock at how my life has totally changed. I'm just desperate for any relief. Thanks! you are all in my prayers I hate that this is happening to any of us.
Tamara, so-called "atypical face pain" is a garbage diagnosis equivalent to "facial pain of obscure origins" or "be damned if I know." However be advised that 600 mg of Tegretol is not the maximum dose. You'll need to be tapered up gradually, but many patients find relief at doses up to 1200 mg per day. Don't add pills yourself, until your doctor gives you a schedule for tapering up
If your pain is dominated by constant burning, throbbing, aching pain, then you might also benefit from being tried on one of the tricyclic antidepressant medications such as Amitriptyline or Nortriptyline. Cymbalta is also an anti-depressant, though of a different type. Very few patients do well on it as a sole medication.
Suggest that you or a family member do some reading in our TN Fact Sheet on the main page, and then in articles linked from the Face Pain Info tab (menu above) on treatment options. If you just can't get through tonight, then go to a hospital emergency room and ask for help. Tell them you have been diagnosed with atypical trigeminal neuralgia and you are having pain at level TEN on the McGill Pain Questionnaire scale.
Watch for further responses from other members of this group. I'm sure there will be some if they haven't logged on already.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
I posted to you, but I think it disappeared. I agree with Red, ask your Dr about a Tricyclic antidepressant like Elavil Or Desipramine.
Also, I’m not positive yet, but I think a magnesium pill at night helps a bit.
You could try a tiny bit of capsaicin cream where it hurts the most (not near the eyes though), but be very careful cause sometimes it can burn the skin. Maybe mix it with some hand cream to be safe. Im not kidding, it often helps, but be conservative with it My heart goes out to you. If the pain gets too much tonight, go to the ER and try to take someone who knows what you have been going through with you.
Im so sorry your in so much pain as I know myself its a hard diagnoses to accept and swallow especially when your not getting clear cut answers… I myself was in denial for a long time and refused meds to only to put me mentally in a tough spot…I have 24/7 boring aching pulling sharp everywhere in my face pain from both my eyes to all my teeth crushing in my temples awful headaches. I started nortripyline 3 wks ago and it has helped with the stabbing sharp pain and has basically turnes the volume down (knock on wood) I still need something else to ease the headaches and tooth pain I too have been told I have atypical face pain and like red mentioned its not an answer…my emergency go to is an ice pak. I hope your pain lessens soon my name is Amanda feel free to message me amytime id be happy to chat with you
Hi Tamara I'm Steph and I found my self in a very similar situation to you. I really feel for you and I know exactly where your'e coming from. You are not alone and everyone here knows what you are going through. Unfortunately the doctors dont seem to be the same. They just dont seem to care and do not understand. I still havn't had a proper diagnosis and I'm still fighting to see someone that can actually help. The last thing you need when you are in constant pain is to be doing battle with the medical profession. Lyrica has been a life saver for me and although I find I do still get breaktrough pains most of the time I can cope. I also find that the side effects are not too bad. They make me stupid and a bit tired at times but thats about it. I also top up with Tramadol. Not so good with the side effects but needs must. I know everyone is different and what works for one may not neccessarily work for someone else. I hope that you get sorted soon and then you can get on with your life. I'll be thinking of you Message me any time if you need to talk x
thanks everyone, im writing down all your advice. I had been trying to make sense of this all in my mind for a month,worrying about what this is going to do to my amazing family who are going out of their minds with worry, whether I was still going to be able to finish my last semester and graduate from law school but as soon as the attacks hit I didnt care about anything or anyone except relief. I hate that and this is only the beginning. Im about to go check in to the hospital with my family, Im honestly not expecting much to come out of that because the doctors dont even know what they are trying to treat. Im going to suggest Amitriptyline, Lyrica and Tramadol. Will keep you posted. Thank you again, God bless
Please keep us posted.
I don't know anyone that has ever liked Cymbalta! It did not help my pain and I poured sweat constantly. Try Lyrica. It works and helps the mood too. I maxed out on it quickly and had to change but I would definitely recommend it. I did get quite a bit of feet and leg swelling though. I also take Tegretal and Amitriptyline. Yeah, doctors suck. I had so much faith in them before all of this. They are very uncaring and many have no idea what they are doing. When they tell you they see this all the time, they are lying. I am still looking for a good one myself.
I have been lucky in one regard, when I finally get to sleep my pain is gone. Knock-on-wood!
Things that help:
Cut your hair short. Don't EVER touch your face with anything (kisses and phone too) except to wash it. Stay out of the wind. I hold a scarf over my face (not touching) when I absolutely have to go out. I test the scarfs in the store by blowing through them. You don't want a fuzzy one. I sewed 2 together to have one wide enough so wind can't come in under it. People will stare so long they run in to stuff trying to see what your hiding. Ignore them. Play peek-a-boo with the babies, they always smile ;) Also, I brush my teeth with the smallest child size toothbrush I can find (gotta love the little suction cup on the bottom of my batman brush, lol) Eat soft food close to room temperature and try to keep it from touching the inside of your cheeks. If you cry try to keep your tears from running down your cheeks. Find something you love to do and do it to keep your mind off the pain. It helps.
Hugs sweetie
thank you everyone for your comments. The support is really wonderful from people who actually understand. Im doing much better now. I ended up staying 5 nights in the hospital so they could give me meds through the IV for a boost. The first two days were awful but it slowly got better after that. It seems like doctors do want to help but when all the MRIs and blood work and everything is clean they get frustrated that they cant find a concrete source of the pain so some chalk it up to something psychological like stress or depression. Which drives me INSANE and in turn increases my stress and depression haha. Still no diagnosis but Im now on 800mg of Neurontin and 75mg on Anafranil. This is my 4th day taking them orally and knock on wood, its going very well. Its just dealing with the fear of the migraines and burning coming back. Any suggestions for painkillers for breakthroughs? Also I don't seem to have any of the common triggers I've read about here...do they develop over time? I find that I quite like the wind because it feels good on my burning forehead
thanks for magnesium tip Nomad. I started taking it at night as well. My dad is a huge believer in vitamins so Im taking things like C and B12 during the day too. I cant find any capsaicin cream but I found some lidocaine that I haven't tried yet. Mixing it with hand cream also seems like a good idea, thanks!
Nomad said:
I posted to you, but I think it disappeared. I agree with Red, ask your Dr about a Tricyclic antidepressant like Elavil Or Desipramine.
Also, I'm not positive yet, but I think a magnesium pill at night helps a bit.
You could try a tiny bit of capsaicin cream where it hurts the most (not near the eyes though), but be very careful cause sometimes it can burn the skin. Maybe mix it with some hand cream to be safe. Im not kidding, it often helps, but be conservative with it My heart goes out to you. If the pain gets too much tonight, go to the ER and try to take someone who knows what you have been going through with you.
Sounds like you are on a good group of meds. I have Percocet for when the pain is extremely bad, but it doesn’t always work. I try not to and know not to take it daily because I would build a tolerance to it. The creams with capsasin (sp?) in it are near the Bengay and are used for arthritis. This ingredient is found in hot peppers. It can help nerve pain briefly, but can burn!! A real burn, so use caution. I agree some doctors are either awful about this or uninformed or both!!! Glad you updated! BTW, I’ve gotten some help with acupuncture. Check out my posts.
I logged on to see if anyone knew anything about herbal medicines and I found this about the magnesium. I will try it. As far as B12 goes, my neurologist had me increase my B12 saying it does help nerve problems. I had tried some I got from an acupuncturist and they made me sick like most meds do.