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.