How fast did your trigeminal neuralgia come on and what do you think caused it?

My doctor said it would most likely stop (eventually!) also. One of the first things he told me when I was diagnosed was that women in my age category (I just turned 60) were likely candidates for this, that there's a high percentage of (mostly) women who get this condition ... who knows? All I know is the pain was/is debilitating, felt like every tooth on one side was abcessed. My entire face on that side felt like it was going to explode. Good luck to you and all those suffering with this.

To Adunlea,
Thanks so much for your information. So as I understand you, the main things that are now helping you are the Tegretal XR, which I'm assuming you take it on an "as needed basis"? Or do you need to take it steadily? I think that my doctor ruled that out because it was too close in the family with the Trileptal which caused me terrible side effects. For 1 thing causing my migraines to become severe every day. But also do I understand that the Reiki treatments help you? Is that where someone does massage on you? Exactly what part of the body do you have done with that?
Also, someone working on your hair can set it off? A simple hair cut?
It is a most terrible pain condition. Thanks for sharing your experience. This pain is on top of daily headaches, which are often severe caused by a major stroke over 4 years ago. I'm taking 3 different meds daily plus wear 2 opiate patches, plus get nerve block, trigger point injections and botox injections--all to treat the migraines, but none of these did anything to help the trigeminal nerve pain. Sara

To Sandra,
Thanks for your comments also. I sincerely hope that we all get over this soon. Interesting that you are 60 years also to my 61 years.
Sara

Adunlea, Thanks so much for all of your further detail. I greatly appreciate it. Amazing that the Reiki does so much for you. I thought that you said that the 2nd neurologist told you that the surgery wouldn't help you, so why are you still considering it? Maybe I didn't understand you correctly on that part of it. Thanks again.
Sara

There are several different types of surgical procedures for TN, but because there isn't a protrusion with mine, it isn't as simple I guess. I am really hoping to go to the Skullbase Institute at UCLA as I know they have cutting edge technology that they use with regard to TN. I believe they use a surgical scope now, which is so much less invasive that cutting a big hole into the skull! I'm always looking, asking, reading, etc., so when I find something that will work for me, I'm going for it, but I'd need to be really sure when it comes to brain surgery. Luckily for me, my new neurologist is fully on board with my questioning mind and he has spoken to different surgeons (neuro, macrofacial, etc) about my case. Ireland is such a small country that I won't just accept hearing from one surgeon that 'it can't be done'! We really have to be our own advocates, don't we?

Yes, we do. When I read on-line, either by Mayo Clinic or NIH, there were a whole bunch of different surgeries as well as a localized radiation treatment to destroy the nerve, I believe. So there are variety of ways to approach it. Good for you for not giving up. Now that I've had 3 bad falls on our wood floors in the last 8 days, I'm beginning to wonder if maybe I really have MS. Really weird. We'll see.

Hopefully not! I've often thought that having TN as a result of MS is so terribly, horribly unfair :( The problems (or so the neurosurgeon tells my neuro) with the many surgeries are not only their effectiveness long-term, but their side effects. When my doc first started talking about partial facial paralysis, I thought, 'well, compared to TN, that sound ok', but when he really went into detail, it didn't sound so great :( And I guess what the maxiofacial guy (I think I spelled this wrong in a previous post) told him was that the nerves are so incrediby small that it's a tough area to work on. I thought the Gamma Knife sounded good when I first heard about it, but again, the effectiveness is in question. I'll keep digging though!

Adunlea, That's depressing about the surgical risk factors. But hopefully they will make some improvement. Sara

I firmly believe they will (I'm annoyingly positive!). I'm really looking forward to seeing the crew at UCLA; it will be nice to speak to docs who know all about this precise condition rather than ones who read about it in textbooks or hear about it from time to time. I'm hoping that they will present some ideas, insights, etc, that I haven't heard so far. Roll on October :)

Also Adunlea, I read where a tooth absess (sp?) could cause TN pain which gives credence to your tooth connection to the pain.

I'm still wondering (after hearing so many of these types of stories) why the medical community argues so strongly about dental procedures not having anything to do with this! It's on my list of things to address with the folks at UCLA in October - a very long list, they won't know what hit them :)

Adunlea,
Good for you!
Sara

Hi Adunlea,
So sorry to hear all you are going trough, which I can somehow relate to while I my self is diagnosed with TN as well, I'm pretty new to it so don't have that much experience and diagnosis yet, but wanted to hear two parts of what you shared.

First one is about acupuncture, was it helpful at all, if so, did it took away all the pain or only the excruciating one? (I had today my first acupuncture appointment - which was very painful at the time, and triggered a lot of the pain which I didn't had for a while),

Second, about your meds journey, did it make you pain free or also just the excruciating pain? And about the dosage, till you got to this dosage of up to 1200 mg per day did you feel some relief or was basically the same till you got to the right dosage?

I am now on in the process of figuring my right med between Oxcarbazepine and Carbamazepine with the dosage and side effects.

Thank you so much for sharing your journey as it shed some light in my journey.

Hope you feel better very soon and would be able to share your way out of it! Take it easy and smile!

Thank you my sweet friend, for the information you provided. I feel I've a wee grasp on what you are experiencing, yet I can't say I truly understand how horrible it has affected you and others.
Love,
Lara