Hello all! I’m new here and new to trigeminal neuralgia. I started having pain in my jaw around the beginning of March and got my official diagnosis of TN on April 23rd. I’ve been on carbamazepine chewables (which are oh so yummy) since then. I don’t know if they’re working. I still get my pain, but it’s been changing since I started having it so it’s hard to tell…
Anyway, I started this post because I was researching chiropractic treatment options and came across an article referring to TN as the “suicide disease”. Does the pain get that bad? I know I’ve had times where I literally can’t do anything until the pain passes, but I can’t imagine it getting so bad is consider suicide. I have a long road ahead of me because I’m only 30 and I have a 5 and 3 year old I have to try keeping up with so I’m hoping to get a good idea of what I have to look forward to…
Yes, TN used to be called the suicide disease, but NO LONGER. There are many solutions available now to help manage the pain, including drugs and surgeries. You just have to do your research (here in the articles, in the book, "Striking Back", and by reading articles in PubMed) and find a knowledgeable doctor who is willing to help you until you find just the right therapy for your own particular pain symptoms. At first, the pain of TN that seems to come out of nowhere can be overwhelming, but there is definitely hope looking forward.
Best wishes for figuring out the best outcome for yourself.
There is a high rate of depression among chronic pain patients, not just those with TN. The first step is to manage the pain as much as possible. My mood is definitely not the greatest when I'm in a lot of pain.
If the pain is already controlled as much as it can be, then dealing with the mood issues is also important. Get support from your family of friends and see your doctor or a private therapist if you're having trouble managing. My family doctor isn't very experienced in managing trigeminal nerve pain but he is very empathetic when I'm feeling down or anxious, and his kind words really make a big difference. If "talk therapy" isn't enough, then there are also medications that can boost the mood chemically. Luckily, there are medications that can help with both depression and pain. Tricyclic antidepressants (amitriptyline, nortriptyline, imipramine, etc) and duloxetine (Cymbalta) are ones that are used often for both nerve pain and depression.
Pain and depression are considered co-morbid conditions - having pain makes your mood worse, but having a bad mood can also make the pain seem worse.
What helps me a lot is finding relaxing hobbies. I'm getting a lot of enjoyment out of picking up the piano again and I've recently started to teach myself digital painting. Distractions like video games and watching TV are also great when I have periods of uncontrolled pain. Basically, anything to get the mind off the pain and onto something else is awesome.
One thing I tell myself is that the pain is only on one side of my jaw, but the rest of my body works perfectly, so I shouldn't let my jaw dictate what the rest of me can do. (:
I've been supporting chronic face pain patients for nearly 20 years, Genevieve. The term "suicide disease" may have originated with efforts by the US TN Association to raise the visibility of the disorder when it was thought to be so rare that even neurologists might never see a case in 40 years of practice. I've seen some very wild claimed statistics for suicide among people who deal with this monster. But I've never seen an original source in peer reviewed medical literature.
The term has long since outgrown its usefulness if it ever had any. Yes, TN and ATN are very painful, often associated with depression, and frequently disruptive of the life you had up until the pain first strikes. But these are manageable issues. I have talked with literally on the order of 20,000 patients and family members over the past 20 years. What I tell them regularly is that if you are very depressed, then your medical care may be promoted by forming an ongoing support relationship with a psychologist who has advanced training in pain management. Don't let ANYBODY ever tell you that the pain is "all in your head", or in your attitude or in your emotions, because that's simply nonsense. But reach out for help if you need it, both medically and emotionally.
Go in Peace and Power
Red Lawhern, Ph.D.
Moderator and Resident Research Analyst, LWTN
I agree with the above posters. Being diagnosed with TN is scary and I know the pain is overwhelming. I first had TN when I was 29. I am now 38 and I am a single mom with a young daughter. It is a long road and a very emotional one. You need a really good support system. It is very hard to parent when you are in pain. There is a lot of guilt that comes with it for me and there are times that I need to rest.
There are a lot of options and there is a lot to learn. Knowledge with Drs isn't always great so you really need to become your own best advocate with this and keep searching for help and searching for answers.
TN does constantly change and come and go. Also the medications used to treat come with side effects so there is sometimes a lot of trial and error to find something that works for you.
What dosage of carba are you on? If it seems to be helping a bit then an increase may work really well for you. If you haven't already--you need to find a good neurologist that has experience with TN and you also need to have an MRI.
Some people have had success with chiropractic treatment but many have not. Also please be careful about who you let touch you. Some of us are very sensitive and it doesn't take much to create more pain. I have looked into Upper Cervical Chiropractors and that is where I would start IF I were going to try it. I, personally, am too nervous of chiropractors to try it. I see an Osteopath and have been having Physiotherapy for some neck issues as well as acupuncture. Both are helping a bit.
Thank you everyone. I’m on my phone and I can’t figure it how to reply individually. I appreciate the responses and I do feel better. My mom is always telling me I need to look at the positive side. She gets post herpetic neuralgia whenever she has shingles and it’s pretty bad from what I understand and she has recommended that I try talking l-lysine to see if it’s PHN.
One of the biggest in worried about is that I live in Rapid City, SD and it’s not exactly known for having the best doctors for anything, much less something like TN. I had an ENT diagnose it. How do I find a good neurologist?
As for the carba, I take 100mg twice a day. Plus I have Norco 5/325. I try to avoid taking it, but I usually give in at least at night so I can sleep. I don’t know if that works more than just putting me to sleep. I’ve taken it during the day when it’s gotten really bad and the pain doesn’t seem to get better until I use my hot rice bag.
Sorry for any typos. My phone hates me sometimes lol.
You should def look into post herpetic neuralgia. Some belief (including me) that herpes simplex causes neuralgia. Your dosage of carba is pretty low. If you are tolerating it well and it is helping I would ask for an increase.
As for a neurologist there is a tab at the top of the page called DOCTORS. Look in there for someone close to you or post a discussion asking other members. Some of us have to travel to get to a good neurologist. Help with this can be difficult to find. But to start any neurologist is better then none. And you are lucky to be diagnosed fairly quickly. Some people go years without knowing what they have.
Heat helps me a lot with my pain too. Sleep is also important. Stress, anxiety, lack of sleep and my monthly cycle are my biggest triggers. Ask anything you want here! You will discover that all the strange things you are experience are shared with many of us.
Sending a friend request :)