Can anyone advise me please?

I understand that there are other options for treatment including surgery....I am sure that there will be others here who will be able to help you more

Hi Martin,

I am so sorry for your pain & discomfort. I am in the same boat. Same symptom, same pain & had no relief in site. 

It went on for a long time. Then I read an article in a magazine about Turmeric. It is a spice or you can also buy it at the drug store. I started out taking 800 mg every morning. I was pain free for 12-14 ours at at time! 

I still take it every morning. The only draw back was it didn't help me at night. I take Carbamazapine at night.

They all work in moderation. If you use to much it stops working.

I searched youtube when I couldn't sleep (sometimes days on end) There are a lot of helpful hints out there. Surgery is also an option. Someone on this web site has had relief with acupuncture. I have a date for surgery but am trying acupuncture 1st. My 1st appointment is on Monday. You don't want a chiropractor that took a week end course for acupuncture. When I went o see this guy he explained that it's a angry nerve. Your body needs to be retrained on how to heal it self. 

I also couldn't eat, drink or sleep. Every time I would fall a sleep the pain came back so intense.

A heating pad helps. Warm water helps NO SUGAR OR TOMATO'S OR ANYTHING WITH ACID!

When I saw the neurologist he also suggested another pill. It is  (Have to eat when you take this) Alpha Lipoic Acid. I take 2,  200 mg if I am still in pain.  

I'll post after my appointment on Monday. He said he should know that day if it's going to help. I have 3 appointment scheduled. Good luck & God bless you!

I feel your pain, I’ve had this for 13 years and it’s awful, the last few years it’s gotten worse and the gabbapentin isn’t working well. I used to use pregabalin but at higher doses as my neurologist was very knowledgable about medications and said the higher strength was ok but I’ve just found now that I also have ME that the side effects, especially the weight gain, are too much for me. Unfortunately due to your scans you wouldn’t be eligible for the MVD, I’m the same, but there are distructive procedures that you can have. If you google distructive procedures for TN there’s lots of information regarding them but you need to see a experienced surgeon. Also you can request to try other medications as lots of people find carbamazepine causes depression for them. There are other things that can help too like Accupuncture, but again find someone with experience in TN. Also people have found relief with crainiopaty (don’t know if I’ve spelt the correctly). Turmeric can give a little relief, I can’t take turmeric pills as they interfere with my thyroxine (always check drug interactions before trying anything new) but I’ve been making turmeric and ginger juice shots which help. The latest thing I’ve been trying is capsaicin oil after watching a video on YouTube, I’m waiting for the 10% stuff to come in the post from America just now that the guy recommended but my therapist gave me some homemade stuff that I’ve been using in the meantime and it’s helped a lot. There’s lots of things that you can try, google google google!! But always double check there’s no side effects or negative consequences to the things you try and try one thing at a time so you know what’s working. Sometimes we get lumbered with crap doctors and it sucks but that’s when you have to be your own advocate for your condition, try all the things that you can do yourself and if you want to try new medications look them all up, read about them and get a feel for which one you think might work better for you and insist they change you, unless there’s a very good reason not to go on the one you chose but then make them find a different one for you. I’m so sorry for what you’re going through. I was really struggling before finding the capsaicin oil and was meant to have the Glycerol injection and was very anxious about it but it’s now been postponed anyways. I was in beside myself with pain and thats when I started googling again and found the video and I’m so glad I did. All the best x

Hi Martin

Sorry your Gabapentin not helping how much are you taking I was taking 900mg per day for 1 year it helped a lot with the pain. I had to get off of it and had to earn off as it is very dangerous not to follow weaning instructions. I was changed over to Taro-Garbamezaprine 200mg to start then up to 400mg per day I found it better than the Gabapentin it gave me my life back no more foggy brain, memory loss and feelings of depression. The next one to take is Aptiom it's a derivative of the Carbamazepine but works great for me too. But is very new so very expensive I take 600mg a day right now as it is cold weather here now.

I live a more secluded life good friends come to visit and I have my animals too. I just lost my man as he wants me back to normal which I have no hope of ever reaching that again. But you have to try first to get a medicine that works for you the pain is unbearable I know. Once the pain is under control you live with your limitations. Hobbies are good do things that make you feel Happy!

I also go to a Psychologist who helps me deal with my life as a hermit almost.

My TN only affects my jaw area i had the surgery mvd it didn't work. I don't recommend it as I know it comes back in a few years. There's nothing that cures it yet. I have had it since may 2016 and lost my job I am on long term disability. I'm in ontario canada so we have to see neurologist for the medications I have told you about here.

I hope this helps you it's one day at a time you have to.

One year ago, I felt very much like you do now. Until last year, I was very physically fit, athletic and outgoing. Drugs do take the edge off the pain. One year later, I am now single after 20 years marriage. I live in another state. I am just starting a new job. TN changed my entire life. It is disabling. It is depressing. There are good days though. My advice is to hang in there the best you can. Note when your attacks come on and any potential triggers . Eat right and try to avoid triggers the best you can. Stress seems to play a factor with my TN. Cold wind on my ear will practically make me beg someone to put me out of my misery. Some people will never attempt to try and understand how you feel, why you're so moody, or why you're cranky. They won't understand why tears are welling up in the corners of your eyes. Try to stay as positive as possible. I wish you the best in your journey.