I am very new to TN and before last weekend had never heard of it! For the last month or so I was feeling off with a low grade headache and some tooth pain, or so I thought. After seeing my dentist after dealing with a lot of pain, he told me my teeth look great and there isn't anything wrong with them. So I came home and lived on Tylenol for a couple of weeks. Then on the weekend it happened, and I can only describe the pain as coming from nowhere on the left side of my face including behind my eyes. It felt to me like 15 root canals all firing off at once. I couldn't talk and tears were coming down my face. My husband felt utterly helpless and scrambled to find me some type of stronger pain reliever in the house. I took it and an ativan ( all I could find ) and it made me a bit dopey but that was it. Then another blast a few hours later. The next day I took it easy. Then the next night here we go again! Clearly something was wrong.
Luckily I was able to get an appt with my GP right away and she figured it out. I had also done some googling, something I never want to substitute for professional advice, and realized I was textbook TN.
I've started on Gabapentin 2x a day and in 30 days we will re-evaluate and make an appt for a CatScan and see what that shows up. Today is a good day although I find the meds make me tired but I'm prepared for that. No flare ups and I hope the meds keep a lid on it for now. i should mention I am a 58 year old female in good health and have never experienced any type of neuropathy myself.
I'm really looking forward to be part of this forum, and supporting you and learning from you. A special shout out to the Canadians, I live in Ontario near the Bay of Quinte.
We are practically neighbours...I live just east of Cobourg.
You are lucky that you have a good dentist and were diagnosed so quickly. Many of us have had unnecessary root canals and extractions before realizing our pain wasn't from a rotten tooth. I can relate to your description of the pain...it is unimaginable.
Gabapentin, and other drugs used for this, take awhile to build up in your system and the dose needs to be raised slowly so it takes generally two or three weeks for the medication to really kick in. So don't be disappointed if your pain returns for now. It can really come and go and every day can be different. I might have three days in a row in pain and then two that are pain free.
You need your Dr. to refer you to a neurologist. TN can be progressive so you want to be proactive in finding the best help. Also, you need to have an MRI to rule out other causes such as MS or a tumour.
You have found an amazing community here. You will learn lots. Ask anything you want. I am sorry that you are going through this.
We are practically neighbours...I live just east of Cobourg.
You are lucky that you have a good dentist and were diagnosed so quickly. Many of us have had unnecessary root canals and extractions before realizing our pain wasn't from a rotten tooth. I can relate to your description of the pain...it is unimaginable.
Gabapentin, and other drugs used for this, take awhile to build up in your system and the dose needs to be raised slowly so it takes generally two or three weeks for the medication to really kick in. So don't be disappointed if your pain returns for now. It can really come and go and every day can be different. I might have three days in a row in pain and then two that are pain free.
You need your Dr. to refer you to a neurologist. TN can be progressive so you want to be proactive in finding the best help. Also, you need to have an MRI to rule out other causes such as MS or a tumour.
You have found an amazing community here. You will learn lots. Ask anything you want. I am sorry that you are going through this.
Jane
Hello Jane and thanks so much for the message. Based on stats alone, we figured there should be 1 other person in our area with TN and I can't believe how close you are! My husband said it looks like we found her ;) I have a lot of questions for you that might not be relevant to the group as a whole. Such as local care, Dr.s etc. Would you mind if I private message you? I've looked on the site to see if that is a option but so far haven't found anything.
I've been reading so many of the posts and learning a lot. This is a tremendous community with a lot of practical and emotional support.
BTW, do you run the Eastern Ontario support group?
Well we are supposed to be very rare but I know another lady in Cobourg with Atypical and another one in Trenton that I met at my neuro's office. Oh, and my mom has TN as well.
I sent you a friend request--you will see that on the right hand side. It says sign out, inbox, friends, etc. Confirm the request then we can message.
No I don't run the support group and I have never been although I have thought about going. I have spoken with the lady that runs the Toronto support group.
Welcome Foxboro! You have found a truly amazing forum to help and support. My story sounds almost identical to yours. I had what I thought at the time was a bad "headache" but just on the left side only for three days. On the fourth day, all "hell" broke loose and I dropped to my knees in the kitchen with the worse pain ever. Felt exactly like you described and I literally thought I was dying. That was a Sunday so early the next morning, I called to see my dentist because like you and may others, I thought it might be a tooth/teeth thing. As it happened, my dentist is closed on Mondays so in an effort to get something to quell the pain, I went to see my primary doctor that morning who essentially diagnosed me. She thought it was one of three things, one being TN, and then referred me to a neurologist right away. I saw him a couple of days later and he diagnosed me with TN almost right away.
I had two MRAs (MRI with contrast) that you will need to have to rule out other causes and then just 9 months after being diagnoses and after seeing three neurosurgeons, a pain doctor, and two neurologists, I had MVD surgery. My surgery was 16 months ago and I remain pain-free and drug-free. I highly recommend reading the book "Striking Back" as it really is the "bible" for TN patients and those that love them. Dr. Ken Casey, who co-wrote the book, did my surgery.
We are all here to support you and answer your questions from a patient's perspective so ask away. I am so sorry though that you have had to join this forum. I would not wish this disease on my worst enemy.
Hello Mybell and nice to share stories and hope mine continues to follow your path!
What I am finding is I am feeling good right now. Then the ' do I really need to be on this medication' conversation with myself crops up. It is about at that time I realize I'm due for my next dose of Gabapentin as the discomfort starts up. In dealing with family members over the years who have gone off meds when they felt better and should not have, I realize how strong the temptation is to do this. Lesson learned.
I feel like the Gabapentin is keeping a lid on a simmering pot of boiling water for me at the moment. I'm waiting to hear back from when my Neurologist appt is, should be soon.
Also planning on ordering a copy of 'Striking Back and looking forward to reading it.
Warm welcome foxboro, although sorry you have to be here.
I’m so glad your GP was able to recognize TN, and good for you for researching, you’ll find it’s very important to read as much as you can and sift through it all so you can make informed decisions in the future.
I’m from Montreal originally, but have been living out west for over 25 yrs now, I’m just outside of Edmonton now.
I hope the gabapentin continues to keep the pain at bay…positive thoughts.
(( hugs )) Mimi
Hi Barbara , if you click on the groups tab in the black header bar above, you’ll find the UK group. Lots of people here at LwTN from there.
Although we all have individual groups, we all still post here in the discussion forum as well.
: ) Mimi