New here and could use some help/ advice?

1

Hello, I’m new to this site, and this group, but I’m hoping someone here can give me some advice. 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. (I promise I will get to the ON soon) 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. 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.

Basically I am here because I need support, I am broken down an now losing hope. Does this sound like On to you? Do you have any suggestions for how to help my pain? (Besides the meds I have tried ice and heat. Heat makes it worse but ice helps). Is there anything specific I should try to tell this new doctor to get him to listen and not just assume I am a crazy 19 year old girl?

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

Thanks Again,
-K

2

IllustratorK, I am a 58 year old chronic facial pain sufferer since I was 23 years old. I have a combination of tmj, have had surgery for that at 29, ATN and atypical GN. I am fused at 3 levels in my neck and all levels of my lumbar spine. Enough about me.

I want you to know I know how hard it is to be young and go to a doctor for help and I too was looked at as if it was an emotional or mental problem. I recall a neurologist that did a CT scan on me in 1982 before MRI was available and of course it came back normal and his treatment plan was to embrace me for all my woes or to be direct he was coming on to me. I never got anything for pain. I was offered meds in the antidepressant class but they did not work.

I always thought because I was young and looked good all the doctors I saw just simply did not believe the pain I was in. I was presenting with neck pain and atypical facial pain. This evolved into tmj and I was dx'd finally. I had deep screwdriver ear pain and surgery resolved that but not the facial pain. In '94 I herniated my first cervical disc at C4-C5 which is typical of tmj patients who have a forward head position. I had no cervical curve. My neck looked like someone who had just suffered from a whiplash. This can set you up for chronic pain that can refer to the face and never resolves unless you can correct your posturing. Better said than done.

Now back to you. I feel so much for you as my own daughter started to present with tmj when she was in her 2nd year of college. Hers thankfully has resolved. She gets some pain on an off but years go by without a flare. You are describing ON exactly as it feels. My neck began to really bother me again about 3 years from a surgery to re do all the hardware. I had a posterior cut and all my muscles shortened and began to spasm, nothing wrong with my neck surgically. Just bad muscle problems. I had almost a 20 year remission from the facial pain and that returned as ATN. I also developed some ON symptoms. I have a wonderful neurologist who does botox injection once every 3 months for the muscles in my neck and he also goes into my scalp for ON and tmj. Very helpful. I also found a good PT who could do an occipital release at the base of my scalp. You need to call around and ask for this specifically. It only took about 3 sessions and my ON began to resolve. My ATN is always an issue with the aytpical GN but I have found after 2 years of trying this med and that med a combination of low dosages of 3 meds that are helpful. I could never tolerate tegretol or lyrica in high dosages. I do take a low dose of gabapentin 300 mg. 4x, 10 mg. baclofen 4x and when 50 mg. of amytryptiline was added this year I began to get some time out from the ATN and GN. I had all the MRI's too, even 3D, nothing surgical for me.

Now there is one other big add on to my meds and I was being given this for all the neck and face pain. I have an understanding pain management doctor. I was off narcotics for almost 3 years after 7 back surgeries. I was being treated with 5 to 7.5 mg. of percocet and then he added 15 mg. of time-released morphine. My doctor does not like to give high doses of short acting narcotics. I fractured a bone in my lumbar spine and had to have surgery in April of this year. I also needed bone spurring removed. Lots of hardware from L4 to my pelvis to stabilize my spine but unfortunately I incurred another nerve injury causing severe sciatica. Now my percocet is up to 10 mg. and the morphine is 30 mg. This is sounding like a lot but I can't go into all the other issues of chronic pain I have.

The increase of narcotics has also helped my facial pain and neck pain. I think it may be the same today as it was for me when I was in my 20's very hard to get a doctor to prescribe narcotics. Sometimes this TN is resistant to narcotics but there are a lot of posts on this website of some sufferers who say they do much better with a narcotic added to meds their neurologists prescribe.

You need to keep your head up high. Keep searching for a neuro and pain management doc that believes you are in the pain you are in. Also, I am going to look for someone who implants a neurostimulation device for facial pain. I have had a spinal cord stimulator for extremity pain in my arms and it does help. There is a huge discussion on this elsewhere. Neurostimulation is being done at St.Judes Medical Center. Google their site and go to neurostimulation. You will be directed to enter your zip code and neurosurgeons and pain management doctors that do this can be requested within a 100 miles of your home. Most will be doing it for the spine. This is something I may have to travel away from home to get.

I do believe you are being thrown to the wayside because of your age. You are in college and that can be very stressful for someone as young as you are but honestly my daughter handled it just fine which I believe you are too. There is a lot on your plate right now but it is also some of the most exciting and rewarding years of your life! You are a happy young lady but in PAIN. How frustrating to go from doctor to doctor. I did not see once in your history about even asking or even being prescribed something stronger for pain. So hard to get something at your age because of the problems young people are having today that use prescription drugs over street drugs and there have been so many deaths from overdosing. Florida has really cracked down.

Keep posting as if you are talking to someone who is listening to every word you are saying. You will find this to be comforting and helpful for you as you realize you are not alone. In the day when I was young I had to go to a support group but now with technology you have your support group at the tapping on a keyboard you will reach real people with real pain who believe and understand you. I am widowed but now a Granny to 4 and expecting my 5th in January. They are my little endorphins! Are you an artist?? Me too. Take care, Sharon

3

Hello Sharon,

Thank you for your reply. It is nice to know that there is someone out there who knows what I am going through. Being written off right away by these doctors, even though I am clearly in pain, is so frustrating. But what can I expect from people who make oodles of money off of other people's pain. I will definitely try to search around my area for someone who can do an occipital release. My mother works in healthcare so she can ask around for me. I'm planning on doing some more research into the neurostimulators today, since the TENS unit worked for me in the past it might be a good option. I will honestly try anything to help this pain.

It is so nice to meet another artist here. I am currently in college studying to get my BFA in Illustration. I am desperate to get better by next fall so I can go on my school's exchange trip to Cortona Italy. They are sending 15 of the best students for a 4 month exchange and we get to see everything (Rome, Venice, Naples, Pompeii). My teacher calls it the "exploration of the origin of fine art." He has already told me that I am on his list to go so I really need to get better before then.

Do you happen to know where or who I could ask to try and find some good neurologists in the New England area? (I am from Connecticut but I am really willing to go anywhere in the tri-state area to find someone who could help.

I hope everything goes well for your next little gran-bun-in-the-oven (my grandma always calls it that haha).

Thanks again Sharon,

-K

4

K, we have a doctors tab at the top of the page. These are all doctors that have been referred by our own members. There are three listed in CT. It is at least a good place to start. Doctors and Neurologists that have no knowledge of TN are a waste of our time and energy. Also, many come with preconceived notions which cloud their view. A great dr. will be actively trying to help you. Stay strong and good luck!