My neuro said I had atypical facial pain…burning sensation on my right side constant…I did the Keppra…no relief…facial cream…no relief…now he wants me to do metrol…steroid…I had a gastric sleeve so I know that is bad for stomach…so he also prescribe nexium…have not taken anything yet…just suffering the burning pain…just wanted to get it off my chest
Interesting that your neuro has not tried you on tegretol (carbamazepine) or neurontin (gabapentin) as they are the “go to” meds for TN. I would suggest you ask your neuro about those meds. Also, make sure you express the seriousness of your pain and make sure he gives you something to ease the pain even if the other meds aren’t working. It is inhumane fore a physician to knowingly leave a patient in severe pain.
Thank you heather…I cannot take tegretal, , gabapentin, triliptal, lyrica, lamictal, depakote. I just feel like they think it is mental…but the pain is real
Do you have bad side effects to those meds? There are soooo many things I can’t take because of side effects. If you don’t feel like your doctor really believes you about your pain you need to get a new doctor ASAP. This pain is REAL and it is terrible to live with. You deserve to find relief.
there are other meds/combos that are not in the anti-seizure med group
baclofen
noratriptaline (spelling?)
clonazapam
tramadol
and many more -- have you read the book "Striking Back" by Dr. Ken Casey? Many Many treatments listed from holistic treatments to surgery and everything in between --- the more you learn about TN - the faster sometimes you can get to a place that is great or even tolerable with your pain.
can you find a new doctor? YOU are the customer -- hopefully you have the freedom to chose a doctor that has TN experience and TN patients!
There are also many varieties of topical pain creams that compound pharmacies put together - --- you just hardly can count on THEM
to find what works for you - you have to find a doctor that works with you as a team if you possible can. I don't mean to sound so brash -- I just hate to see when people are in pain because of incompetent or uneducated doctors.
Keep Posting!
I’m with JC dancer on the doctor situation. Where are you located (generally)? Maybe someone here can help with a suggestion on a good doctor close to you. I think having a team of physicians you really believe in and that you can really talk to and they genuinely care about getting you out of pain is crucial to fighting TN. You DESERVE to be pain free. Just remember that.
My doctor is Joseph Vaughn of UT Southwestern, Dallas, TX. KC Dancer thank you for name of book Striking Back. I just keep reading that Atypical Facial Pain is not really TN. It is more psychosomatic and I think...that I how my doctor sees it. But I have only seen him once. I am due to see him again and we will have a heart to heart on the subject of meds. I really appreciate everyone's support
OMG -- I'm so sorry -- that is 18th century text book thinking !!!!!
That reminds me of when mother's of autisic kids used to be blamed and called refrigerator mothers......or that walking under a ladder will cause you bad luck......
I don't think a heart to heart is gonna take that view away from him.... His view is not science!
This is NOT in your head, awwww, it is real, these are real nerve endings that need competent help.
I wouldn't waste time on this - he apparently knows nothing of this progressive disease, and meanwhile the you are the one suffering for his ignorance.
Have you been up to the Doctor's Tab above? You can click on it and see if there is one in your area that one of us has used....sometimes people travel to the next state over, or further because we are only 12 in 100,000 --- so it's hard to find a doctor that even has a few regular TN patients.
you can go to the groups tab above -- and just read postings in the ATN group section
or join the ATN group -- they will tell you how real this is...
Please keep learning as much as you can! ask us questions! or come here to vent !
KC I just bought the book and thank you so much for your feedback.
Cookster, no less a medical authority than the Medical Advisory Board of the US TN Association published a letter on this subject to its members about two years ago. According to them, so-called "Atypical Face Pain" is a diagnostic label by elimination, not a legitimate medical entity. It is best defined as "facial pain of obscure origins" [aka "be damned if I know what's wrong with you" -- my interpretation]. Likewise, the TNA MAB explicitly disclaimed any cause-and-effect relationship between facial pain and the mental state of the patient. We know that chronic pain and depression are often co-morbid. But there is ZERO medical evidence that depression actually causes pain.
In my personal opinion as an informed layman who has supported chronic face pain patients for over 17 years, any medical professional who uses terms like "psychogenic pain" or "conversion disorder" should have their mouth washed out with soap!
As one other resource for you, I suggest that you look up the discussion in our forums on the Ben's Friends survey we recently conducted for patients referred by a medical doctor to mental health professionals. It is highly revealing of the motivations of doctors who do such nonsense. See attached file.
Dancer is correct. If your physician insists on pushing this mythology on you, then he needs to be fired with extreme prejudice, and a complaint registered with the hospitals where he has admission privileges. Before you do that, first find a better trained doctor.
Go in Peace and Power
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
365-InTheirOwnWords.docx (79.8 KB)I have gotten relief with my type 2 pain with nortriptyline a tricylic antidepressent at 75 mg.. I eat healthy and workout Have you tried a tryclic anti-depressent yet??
http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html#atn
Check out this link ASAP cookster, it gives diagrams of pain as well as explains different TN.
Atypical TN or as I like to call it TN 2, is real, and not caused by depression nor us it pyschosomatic!
There are many different meds that work alone and in combination. It’s trial and error .
Please get a new doctor, if you feel your current doctor is willing to read up on TN and support you then stay, but I as well as everyone else here highly recommend a new one.
You are not alone in encountering a medical professional that doesn’t have a clue, unfortunately we must advocate for ourselves, definitely get a referral to a neurologist.
We’re here for you.
Please read our TN facts on the main page and maybe print a copy off for your doctor!
(( hugs )), Mimi
Isn't it strange that there is more collective knowledge about Type II TN in this discussion than your Dr has? The advice you have been given here is good and correct. I would urge you to fight the female urge to be "nice" and instead put the emphasis on YOU and your medical needs which are not being met. I wish you well.
Thank you everyone for your responses and care. I will be seeing my neuro in a couple of weeks and I will be talking to him about my treatment. I am now better prepared to have a discussion with him.