I was recently diagnosed with TN. My doctor put me on 300 mg of Gabapentin. I know that is a pretty low dose. My pain started in February of 2014 and after being to the doctor 4-5 times, they finally decided that it was TN. Just by the description of my pain. Every once and a while I would get this sharp, shocking pain that started at the top of my head and shot down and went out through my eye. It was terrifying.
Then, in December, I was one of the lucky ones that had that terrible flu. I was sick from Christmas Day until New Years day, it was awful. On December 30th, I had 3 attacks in a row and scared myself so bad I went to the doctor. That was when they decided I had TN. My trigger that time was the constant clearing of my throat. I was 31 when I was diagnosed, 30 when I had my first attack. What I read said it is common in women over the age of 50 not 30!
Here is where I need some help. Everything I read says that TN sufferers can not touch their face or brush their hair. I can. My trigger is if I move my head too fast, clear my throat or cough, even if I walk too fast. Sometimes, they just come out of nowhere. Also, I have dull aches all over my head from time to time. I have my yearly checkup at the end of the month, and I have decided to request a MRI. I need to be sure that this is truly TN.
The 300 mg of Gabapentin has not done much this week, I have had at least 1 attack a day with pain in between. I am going to start keeping track of my attacks (what was I doing when it happened) and bring with me to the doctor.
So, my question is, do all TN sufferers have the same pain or triggers? Thank you all for taking the time to read this and answering! Any insight would be helpful.
Everyone is different. I don't really have any physical triggers except for cold and wind. For me triggers are stress/anxiety, lack of sleep and my monthly cycle.
You should definitely have an MRI and get a referral to a neurologist.
It isn't true that mostly people over 50 get this. Take a look around this site and you will see that isn't true. I was 29 when I first got it.
The constant type of pain that you experience sounds like ATN or TN2--Atypical Trigeminal Neuralgia. This disease is mostly progressive so please do not wait for it to worsen before getting answers.
I'm sorry to hear of your diagnosis. It's a hard one for sure. Know that as you move through the days, weeks, months, there will be different things that trigger your pain. For me it's the cold weather and change in barometer. I can brush my hair and teeth just fine. Monthly cycles, when estrogen levels are higher. are tougher. But I am smarter about this now and changed my diet around to help.
I exercise 2 hours a day by walking on my elliptical or outdoors if weather permits. An easy pace just to get my heart rate up. The gym gets less time, but the endorphin rush from weight lifting is enough to change my perspective. It seems it's all about self-care, perhaps extreme self-care, and that is the only part that is good about this disorder! Wish I'd taken better care of myself prior to the onset!
BTW-my MRI did not show a vessel on the nerve, so I chose Gamma Knife 2x, two huge mistakes! But with the MVD, the vessel was obvious and when the doc took muscle from my scalp to wrap the nerve, the harsh pain disappeared! Now I'm left with a nerve that was cut from the two Gamma Knife surgeries and a boat load of a different kind of pain. All the best to you!
Hi Patrice,
So sorry to hear of your pain. I agree with all the previous comments. TN symptoms are different for each person. My best advice is to educate yourself (read all the articles posted here under the 'articles' tab, read the book, Striking Back,and go to PubMed and read abstracts from research articles). I feel strongly that TN sufferers must arm themselves with information because (unfortunately) many doctors know very little about the condition. There are multiple solutions available to us now for relief from pain, some as simple as a drug combo that works wonders (for me: 10 mg amiltriptyline and 300 gabapentine), and other more complicated solutions including surgical procedures.
I wish you the best in your search for a healthy pain-free life.
Rissmal
Thank you all so much for your reassurance and taking the time to respond. When you mentioned how hormone levels/monthly cycle could be triggers, LyndaS and justjane37, that made complete sense! I am going to start exercising a little more and watch my diet more carefully. Being a chef, perhaps looking into diet for TN could help others as well. I wish you all the best and hope that I could reassure you some day the same as you all did for me. Have a great day!
Patrice, do not be concerned. Your symptoms sound like TN. Probably a conbination of 1 and 2. My first attack was at the age of 34. Sometimes walking does trigger the attacks. So many other things do as well and it changes on almost a daily basis. I can usually touch my face and brush my hair, although it sometimes doesn't feel good. Sometimes on a nice day i would like to put the car window down, but my hair blowing in the breeze causes pain. Tegretol mostly controls the sharp pains, I almost constantly have a dull ache that is different almost every day. Gabapentin also did not work for me. You will find after being on this site for a while that almost nothing works for the dull aching pain. You really do still need an MRI. It not only rules out other things, but helps to confirm the diagnosis of TN in the long run to the exclusion of other things.You are in the right place for support. These people have wonderful ideas and can help get you through the worst of times. Best of luck to you
What changes in your diet have helped LyndaS?
LyndaS said:
I'm sorry to hear of your diagnosis. It's a hard one for sure. Know that as you move through the days, weeks, months, there will be different things that trigger your pain. For me it's the cold weather and change in barometer. I can brush my hair and teeth just fine. Monthly cycles, when estrogen levels are higher. are tougher. But I am smarter about this now and changed my diet around to help.
I exercise 2 hours a day by walking on my elliptical or outdoors if weather permits. An easy pace just to get my heart rate up. The gym gets less time, but the endorphin rush from weight lifting is enough to change my perspective. It seems it's all about self-care, perhaps extreme self-care, and that is the only part that is good about this disorder! Wish I'd taken better care of myself prior to the onset!
BTW-my MRI did not show a vessel on the nerve, so I chose Gamma Knife 2x, two huge mistakes! But with the MVD, the vessel was obvious and when the doc took muscle from my scalp to wrap the nerve, the harsh pain disappeared! Now I'm left with a nerve that was cut from the two Gamma Knife surgeries and a boat load of a different kind of pain. All the best to you!