Today I met with the newest doctor on my journey to become pain free. Dr. Lee is awesome with facial pain and I highly recommend anyone that goes through this hell to see him.
Dr. Lee came in and introduced himself and asked how I was doing. He asked how I felt and what my goal was to accomplish. After explaining to him that I wanted to be “fixed” and no longer dependent on medications to make it through my day we talked about my history from the occipital neurectomy forwards. He asked me questions on exactly what pain I felt and to what extent I felt the pain levels.
This is where my hopefulness quickly started to fade. Dr. Lee stated that I do NOT have the classic Trigeminal Neuralgia that can be treated with surgical procedures. What I have is Trigeminal Neuropathic Pain and that I’m only at the beginning stages of this pain. He stated that this can become exponentially worse than what I am currently experiences. He believes that this was triggered with the Botox injections I received back in June. We questioned why this ONE injection time caused this after I have had injections 3 other times previously. Dr. Lee stated that he was unsure, the nerve could have been hit, the botox could have attacked the nerve, etc.
At this point I am in tears listening to him tell me about this. All I could manage to ask was if I would be like this forever. My heart sank when he said yes. I came to his office looking for answers. Yes I received answers today, however, they were not what I wanted to hear. I was hoping for him to tell me that my case was simple and we would be able to fix it. Instead I left with a face burning from the tears and a script for medications that I have to work my way up to the dosage that “hopefully” will handle the pain. The only surgical option I have is a neurostimulator. With this I have to attempt this medication for 6 months and pass some other testing before my insurance would even hear the pre-approval. And apparently it’s harder to get approved by my insurance for this than other insurances. Of course! With regular TN treatments, there are several options that damage the nerve to provide relief and doing so with me would only push my pain beyond my current pain levels now. Doing so could cause a condition called anesthesia dolorosa, which is a possibility I may develop currently due to my prior treatments I have received already.
I left his office feeling very defeated and hopeless. Nobody wants to hear that they will be in excruciating pain for the rest of their life. Dr. Lee stated that if my condition progresses the suicide rate radically increases as the ability to escape the pain decreases. Once again, something that I did NOT want to hear. I do appreciate his honesty and that he did not sugar coat this for me. I cried all the way back to the truck and for some time on the car ride home. A pit stop at the Oliver Winery definitely made the day a little more enjoyable. 🙂
Am I scared? Yes, I’m terrified of what this pain will do to me. Am I scared of the side effects from the medicine that I am having to take? Yes, but I will choose one evil over the other. I allowed myself to have my pity party on the way home. Now it’s time for me to suck it up and find a way to kick the TNP’s ass. I will not be defined by chronic pain. I do not want my kids growing up remember that mommy couldn’t do anything because she hurt too bad. I will win. I have to.
One week after my last round of Botox in September which included my scalp back to my numb line still left this burning pain and my hair still hurt. I had an appointment with my family doctor to follow up with her to see how everything went. I informed her how the forehead pain was better but the scalp was still bad and I was still getting stabs in my cheek bone. We decided to start me on Neurontin and see how that worked. And that at this point I should try to get back in with the neurosurgeon that did my occipital neurectomy several years ago.
It took about 2 and a half weeks of phone calls and countless hours on hold trying to gather all my old records to send to the new surgeons office. I guess my original surgeon decided it was ok for him to retire! Well I finally received an appointment for October 27th!
In this time span the neurontin hadn’t seemed to help yet. And my pain was beginning to get worse. The shock like pain was becoming more frequent along with the stabs. It had started attacking my eyeball, burning and watering at the same time (excruciating btw).
I’ve always known cold was a trigger for me and moving my hair/touch my scalp would set off the pain. Well at work one day I brushed the hair off my forehead and immediately collapsed to the floor in the worst pain I’ve ever felt in my life. My face was being attacked by a lightning storm and that damn Martian was back but this time with a blow torch. A visit to the ER and some IV medicine helped to bring the pain down to a tolerable level. Meaning it went from a 10+ down to about a 5-6, which is where I function pretty much every day with the pain attacks I have. After the ER visit and a talk with my doctor we decided to up the amount of Neurontin I was taking…..ugh. Hello extreme side effects. The medicine was slowing me down so much mentally and was not touching my pain at all. In fact my pain had started attacking my jaw. One day I took a drink of ice water and immediately I was curled up on the floor in a full blown attack of the lightning storm and stabs. Once it was finished I thought to myself, “well damn, there goes ice cream!”
Once again after talking with my family doctor and not having any progress we decided to switch my medicine to Tegretol. About 4 days in, my pain was still just awful. We decided to increase the medicine and ahhhhhh a little bit of relief! The attacks weren’t as violent as before! Now I just felt drunk, unsteady eyes and nausea just without the alcohol. We decided to add Zofran to my mix to help with the nausea. So now I feel like a drunk without the nausea. Let me tell you this medicine is loads of fun…NOT. However, it is helping keep the attacks more tolerable.
Now if the cool wind hits my face, my ear gets cold, my scalp is touched or my hair moves it will still send me into pain, just not as bad as it was before. Sometimes I wonder if the side effects are worth the little decrease in pain. Most days I would say yes.
My appointment with the surgeon is right around the corner and I’m very anxious and excited. I hope and pray that he can help fix these problems.
I get the weirdest looks every time I tell someone that my hair hurts. Some days it actually hurts. Other days its just my scalp and horrific days it’s both. AGHHHH!
Around November/December the pain was more than bearable. A friend had reached out to me about essential oils. Desperate for relief I went all in! Essential oils are fabulous and I use them in my every day life.
The pain I was feeling in my head and face came back and stopped responding to anything I was doing. Once again I sought out help from Botox. In June I only had the injections done on the left side of my forehead and my left temporalis. A week later the majority of the pain was gone. The only thing left was this awful pain in my scalp. Every time my hair moved, my scalp hurt. Washing my hair, my scalp hurt.
At this point I was desperate for help. I cried every time I took a shower. I cried every time I had to fix my hair. I decided to take my haircut to an even shorter pixie cut hoping that would help. It did ease the pain a bit during the day, but washing my hair was still awful.
In August I went back to have the other side of my forehead injected with Botox thinking it may help with the pain. I had been in contact with my family doctor so they were aware of how bad everything had become now. We decided to wait a week after my injections to reevaluate and let the botox settle. Once again I still had the scalp pain.
At this point everything was still pretty tolerable. I had my good days and my bad days. The week of my birthday came around in September and it became unbearable yet again. I was able to get my redo of the left botox injections moved up from the end of September a couple weeks earlier. This time we injected my forehead, temporalis and the top of my scalp all the way back to my numb line from my previous surgery, hoping that this would help. I gave it a week and still the scalp pain was there.
After my surgery I was pain free for over two years! I was so excited. I had my life back. Living in pain everyday starts to consume every thought in your life. I had forgot how to live without pain. Once the pain was gone, I went balls to the wall! I had 3 jobs, I was coaching a dance team, life was great! I met the perfect man for me and I was expecting a daughter.
After she was born I thought life was perfect and that things couldn’t get any better. I was right….they got worse. I started having pain again. This time it was sporadic. It wouldn’t last more than a day or so. I had my occasional pain that visited over the next three and a half years.
February 2014 I received my promotion at work. Hello stress. The occasional pain became more frequent. In April I decided to have botox again and they only injected the left side of my forehead. Hello relief! Once again this only lasted for about three months.
I FINALLY had a correct diagnosis. Occipital Neuralgia. It’s funny how not even 1 minute of my pain doctor sitting in the room with me I had a diagnosis and we were on our way to a treatment plan. Since I had already been through all of the medicines that did not work, it was now time to look at alternative options.
First we went through nerve blocks. AHHHH Relief! Oh you only last for a week…. Well that worked so now what is next? Radiofrequency Ablations. Ok, a day of hell for 1-3 months of relief, I’ll take it. Problem being my C1-2 were causing lots of issues for me. My pain doctor at home decided it was best to sent me out of town to seen another doctor who specializes in this type of treatment. So I traveled 3 hours away to meet with another more specialized pain specialist that completed the Radiofrequency Ablations on my C1-2 area. He completed this twice for me and then decided it was best that I see a neurosurgeon.
I was given the option of a neurostimulator or to sever my occipital nerve completely. After lots of research and discussing with my family, we decided the best choice for me was to have my nerve severed. On February 26, 2009, I had my occipital nerve severed. Just a little over 3 years from the day hell started, little did I know that 6 months later I would be completely pain free.
I was eating dinner with my family at Texas Roadhouse when I got this awful pinching sensation at the corner of my left eye. By the time I had made it home the pain had attacked my forehead and felt like I had a little martian behind my eye trying to push is out of my head. This pain lasted for the next 10 days despite all efforts by myself and doctors. I was able to enjoy the next two weeks of the second semester of my senior year of high school before hell set in for the next 6 months!
The next round of pain set in and stayed with me as I said for 6 months. There was lots of tears and hopelessness in this time. The pain started at the base of my skull on the left side and felt as if an ice pick was being driven straight through my skull. Those pesky little martians continued to attack the back side of my eye. My scalp would feel as if I had a blow torch on it. These joyous sensations were only felt on the left side of my head.
After seeing my family doctor and countless ER visits, I finally had my first appointment with a neurologist. And after a month quickly realized that was a bust. He never listened to a word I said and prescribed me medicine that I was very allergic to. So on to the next one. This experience was slightly better. The pain was never able to be controlled with medications. I have tried everything possible under the sun. FInally in a desperate attempt we tried Botox over the entire left side of my head. HALLELUJAH! It finally provided some relief for about 3 months. At this point Botox was still not an FDA/insurance approved treatment for “migraines” so that was my only shot. My neurologist was out of options and I was on to the next one. From there I had been seen at the Diamond Headache Clinic (that’s another post for another day) and the Cleveland Clinic. Both with no success.
It was not until I saw a pain specialist at home that I was finally able to get some relief.