My story

Hello, I'm new to this site, so I figured that I should start by sharing my story. I have had type I TN sine I was seven after falling down a fight of stairs on my head and neck. Ten years later when I was 17 my type I (which I had managed well without meds) morphed into a combination of Type I and type II. The flare lasted four months and nothing helped. The doctors told me it was all in my head and wrote me off. It eventually got better and things were going back to normal until 5 weeks ago.

On October 28th I walked into a door at school (I was working in the color darkroom which is pitch black and someone had left the door open). Three days after that I began experiencing a constant burning/throbbing pain in the back of my head that started at the base of my skull and went upwards (ON?). Anytime I moved my neck I get electrics shocks that travel from the base of my skull and up the back of my head into my scalp. I also began experiencing stabbing pains behind my eye and severe light sensitivity to the point where I even wear sunglasses indoors when lights are on. The pain has been getting worse to the point where I can't even move my neck without getting the excruciating shocks and the right side of the back of my head is so sensitive that I can't even brush or wash my hair without bursting into tears (and I am good with pain thanks to my past TN history).

At this point I am at the end of my rope. All signs are pointing to ON, and multiple doctors have muttered it under their breath during conversation but nobody will give me a straight answer. At first I saw a physical therapist who evaluated me and tried a TENS unit (which actually helped) but he said I was too hypersensitive and wasn't a good candidate at the time (I found out later he didn't want to work on me because I didn't have a clear diagnosis and he didn't want to make things work). After multiple visits to my PCP and my mother nearly having a breakdown in front of her I was referred to a local neurologist.

As soon as I walked in the room I knew he wanted to "wash his hands of me" based on my chart from the neurologist during my bad TN flare at age 17 (where they had told me it was all in my head even though I had a clear diagnosis from 10 years prior but no matter). He ordered 3 different MRIs of my head, brain, and c spine. All came back normal so he just gave me a prescription for baclofen and never made a follow up. A week later my mom called and convinced him more had to be done because I was getting worse. So he offered to try an occipital nerve block. I got the block and had four awesome days (two of which were completely pain free). Halfway through the fifth day the block wore off and I was worse off than before I had gotten it.
The neurologist said there was nothing more he could do so he referred me out to someone at another hospital as well as a pain clinic. I still had no clear diagnosis and nothing to really help the pain. Over the next two weeks while I waited for calls about my referrals my PCP tried putting me on Amitryptelene (sp?) and then Lyrica. I didn't tolerate either as I am very sensitive to medications (I was never able to take any anti epileptics for my TN because they messed me up so bad). I had a planned appointment with my rheumatologist as well and he saw how much pain I was in and gave me voltages cream, lidocaine patches and indocin. The indocin helped to take the edge off and the jury is still out on the cream (at this point the pain of putting it on outweighs the benefit plus it makes my hair greasy). I can't say about the patches because my hair prevents them from being placed where the pain is.

After having my pain clinic referral bounced around 4 different clinics (some didn't take my insurance, while others just didn't want me) I finally got an appointment at a hospital about an hour from where I live. That appointment was yesterday and it has completely wrecked me. I don't know what my neurologist wrote in my chart but the pain clinic doctor walked in and (after taking my medical history in which he only focused on my multiple past surgeries which were all done for viable reasons) the first thing he asked me about was how my mental state was because that is probably the cause of my pain. I told him my life was good, I am a straight A student on scholarship to my dream college, I have a great roommate and we are best friends, my classes don't stress me out very much because I am good at time management and Illustration in general, my family is good. He went right back to "well if there is something bothering you, you should really talk to your doctors about it." Once again I told him that my life is good and that my only problem is that I am in constant pain and I can't even live on campus anymore because of it. That is my problem and that was why I went to see him. Not to be drilled about my mental state and if I had ever been evaluated by a psychiatrist (which I had a year ago during my bad TN flare because it was protocol at another pain clinic that we be evaluated and she said nothing was wrong with me mentally).

By the end of my appointment he still believed I was hysterical and mentally Ill rather than a young girl in severe pain. He offered me some antidepressants and asked me what I wanted to do. Tearfully I told him I wanted to go home. I didn't thank him, I didn't even fill the script.

So here I am with no answers still and I am in a world of pain. I am not living a life right now. I am keeping up with my schooling but the pain just keeps getting worse. And I doubt my new neurologist will help me because I am fairly sure there is something written in my chart about my mental health. I see him on the 17th.

I am desperate for something to help, or even a cure. I am planning to apply for a study abroad program my school is doing. They are sending 15 of the best students over to Cortona Italy for 4 months (we get to se everything Rome, Venice, Naples, Pompeii, etc), and the Teacher spearheading the program already told me that he wants me to go. Art is my life and being able to go to the birthplace of fine art is a dream of mine, but I can't fulfill that dream without getting this pain to go away first.

Thank you in advance for reading my blog and I apologise for the long post. Writing all of this down really helped me get a lot of my frustration off my chest.


Hi, I am sorry for your pain, a pain we both share. I started with TN about 2 years ago and only recently have started taking drugs. I am not sure the gabapentin, tegretol or oxcarbenzapine are doing anything, but the addition of baclofen stops the pain, usually. I had 3 episodes yesterday and had to take 3 baclofen. Ugg. My favorite time of the day is when I first get up and have no drugs in me. Have you had the injections done? I am wondering if anyone on this site has had success with them?

Hello Toocool4school,

I’m sorry it took so long for me to reply things have been really hectic these past few weeks with Finals and Doctors appointments and the holidays.

I have had the injections for my Occipital neuralgia. For those they take a syringe with about two tablespoons of a coctail of lidocaine (both short and long lasting) and some steriods and they inject them into a few different places on the back side of the right side of my head. If I remember correctly there are two injections in both spots. Two for the main branch of the occipital nerve which is just past the middle of my head on the right side and two spots on the lesser occipital nerve branch which is closer to my ear but still on the back of my head. Everyone always tells me that the more it hurts while they are doing it the better it will work. I always have immeddiate pain relief from the lidocaine, that lasts about 3-4 hours, then the pain and soreness from the injection itself normally sets in. Normally by the next morning I am feeling pain relief though and it just gets better from there. Around day two is when the pain is normally gone all of the way and that lasts until day 4 or 5. After that the pain normally comes back fairly quickly for me but those few days where there is no pain are AMAZING.

I don’t know how the injections for TN work but I have heard that they are very similar. I have been to scared to get those myself because I think they have to go through your face and use a much larger needle (I am pretty good with needles as long as they aren’t very big, that’s when i start getting nervous). Plus my neurologist who I had seen during my last major flare didn’t do trigeminal nerve blocks.

However, if they could provide you the pain relief that they give me for my ON then you should really try them. The pain is definetly worth it in my case because those few, precious, pain-free days are what I live for nowadays.

Wishing you a pain-free holiday!

Hi ! I do not know if this will help you or not-I hope that it might! I have type 1 and type 2 tn and tmj. never had a problem with face or jaw or head (except for migraines

hi! I had a dental injury including torn cartilage during a procedure 23 yrs ago-I have type 1 and type 2 tn and tmj because of this and a long history of migraines besides-its been a terrible experience and little was done besides a plastic mouthguard that caused intolerable pain and drugs that had bad side effects or were I basically just lived with it. it was hard if it got real bad at work(I was a nurse) or if I was in public. it made me withdrawn at times and anxious when I could feel it ramping up. my husband came down with carpal tunnel both arms and thanks to womens world magazine we were introduced to a pain cream-topricin -which is homeopathic-we added anti inflammatory herbs and some homeopathic tablets and voila! much better -now healed! this was our introduction to does not mask pain,it stimulates the body to heal itself,so it does take some time. I started to look for homeopathic meds for tn-i use spigelia 200c strength and staphysagria 200c strength- also occasionally hypericum perf 30x or more-what a blessing it has been! also if I have any sius congestion I take boiron sinusalia because sinus problems increase the pain. I also take oil of oregano gelcaps to avoid colds and flu and it really works. one day I had bursts of pain running up and down one side of my face for 21/2hrs. and I was out of meds-then I realized that I did have hylands migraine tabs-the pain stopped instantly!! I got to try it again the next day with same result! I used to get a deep terrible burning of 1/2 of my head/face-I seldom get that now and when it starts it just fades away. I plan on restarting benfotiamine -a synthetic b1 created in japan for diabetics-it can save their vision...their renal function and heal their diabetic neuropathy-the article also mentioned that it healed someones tn! I hope this info will be of some help to you-I use 1 800 homeopathy and the have a pharmacist one can speak with....I forgot-mag phos is another homeopathic to quiet nerve pain. the prices are pretty good as well. I use all these things-with good effect.please check it out-I hope you get relief soon-I know how terrible this disorder is-god bless you! erin