I though I was having sinus pain but two CT scans and an MRI were all clear. A Neuro thinks I have Atypical Trigeminal Neuralgia. He prescribed Carbamazepine. Starting at 100mg twice a day. I was suppose to double that after a week and then keep increasing until I reached a level that manged the pain. I started it, stopped it and started it again. I can’t take it, it depresses me physically and mentally. At 100 mg twice a day I started having tingling from my cheek bone down and some burning sensation right at my cheek bone. I am not sure what flares it up. I have a sore spot on my head just above and a bit behind my ear. This is all on the same side - my left. I am not sure what to do at this point. When I saw the Neurologist I was not looking for pain meds but right now I am afraid of what will happen if I don’t find one that works for me.
Is anyone doing this without meds? If so, can you function? I am a single woman who cannot survive without working. I also can’t do my job when I feel like a zombie.
Hi
I am so new here-we probably signed up at the same time.Welcome.I am sure some of the members that have been around longer will be more helpful.I hate taking drugs-but this put me over and beyond.Sort of a bizarre torture.
From what I have seen many people take combos.
An example with me I was taking gabapentin and tylenol 3.When doctors put anti-depressants in the mix I could not take them.If they had started on that and felt that was my only option I would not be righting this because I would be dead.Because I knew some drugs helped,and some not so much or cause problems I have started learning pushing for myself.
I hope others will have better answers than mine.
All the best
Try capsicum cream from Walmart 4 times a day in area where pain is. Also, u can try
A compound cream with anti seizure drug in it 4 times a day with very little side effects versus pill. If u have atypical tpye - tricyclic
Antidepressant works better on this tpye
I use doxepin 25 mg 3. Times a day. I could not function on Lyrica and trilepal cause a rash.
I was diagnosed with TN last November after years of going to dentist and ear doctor for various flare ups of pain (both on left side). In November it became literally uncontrollable with shocks at least 2/minute…that would go on for hours. Taking a deep breath would even make my teeth hurt (on left side) No pain meds would work (Tylenol, percocet, Makers Mark, even tried marijuana–but not all at once!) My GP prescribed Lyrica–no help. Her associate tried some Gaba stuff–no help.
I finally got into a neurologist who instantly put me on Trileptal. He said it has an 80% “cure” rate (no cure of course–but you know what I mean) with fewest side effects.
And…it works great!! Started at 300 mg and increased to 600 mg. Shocks disappeared completely. I have a " fullness" feeling in my ear that reminds me it is still there, but no tooth ache or anything really uncomfortable. Side effects were minimal. Starting off I was tired a lot , maybe a bit depressed but I acclimated quite well to the drug within a month.
Only enduring side effect is low salt. It is a rare side effect called hyponatremia–your body doesn’t retain salt. This summer I dropped about 12 pounds working out and dieting and nearly passed out one day after a bike ride. My sodium dropped to ~ 123 which is borderline bad. So we dropped my Trieleptal to 450 mg/day and now we monitor my salt with a blood test about 1/month. My salt always tests a little low now but has no effect on how I feel or act. It is actually kind of a benefit because I no longer feel guilty dumping salt on things. (Always monitor my blood pressure as well at home so I dont overdo the salt and drive my BP up)
I don’t know why these doctors don’t start people off with Trileptal…it is Oxycarbamazepine–an improved version of the stuff you’re taking now–Carbamazepine. Maybe you can get himt to switch. It is generic now and only costs about $20 or $30/month.
I don’t know.I am on gabapentin -for hot flashes and pain doctors just decided to increase it.Does not help at all.
Family doctor won’t change it and now I have to wait to see the pain specialist to see if he will change it.
So frustrating-and they tell you to stay calm.
I hope you continue to try and find the cause of your problem and have it fixed.it is so nice to get a relief from the pain.
Lucky you.
Thanks Tom, saw my dr. on Wednesday and am off the carbamazepine. He gave me samples of Oxycarbamazepine - 600 mg. He told me to wait a week before starting it to get the carbamazepine out of my system. I am non the fence about taking it. My pain is not that bad, mostly an ache that feels like my sinuses are really inflamed. There is also some tingling in the hole lower half of my face that is milder since I stopped the carbamazepine but not completely gone. The neurologist isn’t sure this is ATN and is sending me to an orofacial pain dentist after the first of the year. An anti seizure drug just seems like a little much to try to diagnose something.
It is good to know about the oxycarbamazepine though, just in case it is ATN. Glad it is working for you.
I am not thrilled about using trial and error drug prescriptions to
diagnose a disease. As long as the pain isn’t too bad it is probably
smart to not take a drug if not needed.
However the problem with TN is that it is difficult to diagnose (almost by
process of elimination; there is not standard test that can be
administered) . And it will respond to standard pain killers. The only
thing that really works apparently are anti-seizure meds. Carbamazepine
and oxcarbamazepine are both anti-seizure drugs, the latter an " improved"
version of the former. (less side effects)
You should get the book “:striking Back, The Trigeminal Neuralgia and FAce
Pain Handbook” by George Weigel and Kenneth Casey. It is written for
layman and although a bit out of date, first published in 2000, it is still
very helpful. Always good to educate yourself.
One other thing–I just checked the Striking Back book about ATN (I have
TN). TN has shock like pains whereas ATN has more constant pain in
combination with shocks. Apparently the anti-depressant are effective for
suppressing the constant pain so both anti-siezure and anti-depressants are
prescribed for ATN. I hate the idea of cocktail drugs because of the
issues with more side effect and drug interactions.
thanks for the info Tom. Sometimes I think those who have TN or ATN have more info that doctor’s. Especially since this is fairly rair. I don’t have any shooting pain so I am not sure why my neuro has not tried an anti-depressant. I have not started the oxcarbamaze yet. I did not want to deal with it over the holidays. I have a bunch of sample though that I will keep handy just in case. Some days I just have what feels like the sinus pain. Some days i have little to no pain or discomfort and some days I can just sort of feel a nerve or two in my face. taking it day by day and will look into reading that book after the holidays. Looks to have some great information in it. Just wish I could find it for less $
I sincerely hope you have a pain free holiday season.
I am also a bit skeptical of GPs for neurological problems; I guess I got
lucky when I was referred to a neurologist when it became clear it was not
teeth or ear infections.
One thing about some of these drugs–the oxcarb takes a while to build up
in your blood so it takes a week or two before you will see any benefit.
Did you look on amazon for the Striking Back book? You might be able to
pick up a used copy somewhere.
Have a happy holiday and merry Christmas( if that is appropriate for you
belief system)
I really wish everyone a pain free holiday season.
Tried for the trileptal with my family doctor today-but no luck.
Even the effexor is not holding the burning pain back at all.
I find the strong marijuana oil is good for sleeping.You need stuff with high THC for nerve pain-so I have been told.
Hoping for a better 2017.
So far so good a bit of the original discomfort but no real pain. Think the diagnosis is off but time will tell. Praying everyone finds relief from the pain. Merry Christmas to everyone.
Oh and where does someone get marijuana oil. Might not have ATN but have had sleep issues for awhile
I live in Canada and have a legal prescription and some of the suppliers have oil.
If you have access to high THC marijuana you could make your own.
Apparently high THC is needed for nerve pain.
Most of the strains I have tried vaping were not strong enough to make the pain go away.
So,basically,I have settled on the oil at night.
Good luck.
more to ad to the confusion. saw a new dentist yesterday and my crown on the side with the pain needs to be replaced they think food and bacteria is getting under it. also there is evidence that am grinding or at least clenching. taking it one visit at a time dealing with all of it and will see if any of changes come about.
Ellen,
I have been dealing with this for over 5 years. I take Cymbalta 60mg, Tegretol 600mg, and Gabapentin 2400mg daily. I have smoked pot during this time but it doesn’t really take away the pain or burning sensation (it just makes you feel high). You may want to try Cymbalta instead of Effexor. Also, my neurologist says that Carbamezapine is a very safe drug and it is basically the gold standard for ATN. When the pain first came about 5 years ago, Gabapentin was a life saver. You may want to try some of these for your pain.
Thanks for the response NaughtyB
Cymbalta worked but left me a crying wreck.
The effexor does not seem to do a lot.Working myself up to the maximum dose and stay there for 2 weeks to give it a chance.
My specialist up and quit just before the new year so I am scrambling again.Hopefully he is OK-but it has left a whole slew of patients with no main doctor.
I am hoping to go on trileptal.
I find the marijuana oil helps me to sleep through the night.
Hi, I’m a 26 year old ATN sufferer, the lower left half of my face hasn’t stopped hurting since 2014. I tried 7 different medications and finally settled on Nortriptyline, one of the Tricyclic antidepressants. I tried Oxcabimazipine for my 3rd med and it made me SUPER dizzy before I ever got any pain relief. I personally recommend everyone with ATN try Nortriptyline, none of the Anti-seizure meds helped me, even at really high doses, but I noticed the help of this one immediately. At the higher doses (75-100mg) I noticed some real cognitive changes, I felt fuzzy and vacant and I didn’t feel safe driving, and it makes me quite sleepy, but I found a balance at 50mg. I get pain relief down to a minor ache most days, but I don’t feel to tired to think and focus. Every person is different so no promises, the only other med that helped my pain was Lyrica, it was amazing, the only drug that made me pain free on the starting dose, but it made me dangerously suicidal and unable to get out of bed with in 2 weeks, so I had to stay away from that. Good luck finding doctors who will work with you.