Adventures of My Life: My Trigeminal Neuralgia Story

My story is not like most. I am 25 and have Trigeminal Neuralgia. The pain started in late March of 2013. It was not all the time, but very debilitating when it struck. I lived with this until early summer, when the attacks became more frequent, went to my primary doctor who thought that I had some knots in my muscles on the left side of my face. I was prescribed muscle relaxers. They did nothing. His next thought was TMJ. I tried the NSAID medications and saw my dentist (as my primary doctor asked me to). My dentist said definitely that what I have going on is NOT anything he can treat and to go back to my primary doc. When I went back with this information, I saw him and his partner, who also did a full evaluation. They both agreed that the symptoms I have are caused by Trigeminal Neuralgia. That was in October of 2013.
Prior to that in August, I left my retail job and did so at just the right time, pain had increased to the point that I could hardly function. That led to the diagnosis. November was a very hard month, I was unable to drive due to the pain and the pain medications they had me on until I could get a pain management consult.
That happened in December. He immediately put me on Gabapentin. What a nightmare the time to follow was. I had severe memory loss. I could not remember the day, date, where I put stuff, and worst of all, I could not ever remember how I wanted to finish my own sentences. I went back and told my doctor that this medication is a nightmare and I felt like I was going into early onset dementia. This freaked him out, and he told me to go off the gabapentin cold turkey (not recommended, but necessary). I started Lyrica the same day. The pain improved significantly and my memory started to return.
By late January, I was back to normal (after the gabapentin and a bout of pneumonia). I had an MRI in late January. It came back clean. The pain hit a high in February, and I had to wait till mid-march to see a neurologist, so I decided to try Upper Cervical Chiropractic care. The neurologist had nothing to offer, except for Tegretol, which I allergic to. I did not see her again. I continued to see the chiropractor until mid April, when the adjustments started to hurt. During this time, I began seeing another interventional pain specialist who began doing a type of nerve block called the SphenoCath. These are non invasive SPG blocks. The first one I had in April 2014, and the second in May 2014. They did work. I began having pain during the Upper Cervical adjustments, and my pain doctor told me to stop seeing the chiropractor and to get an MRI. The MRI showed a few disc herniations in the cervical region. PT was started immediately and so was TENS therapy. At this time, I was being evaluated for a genetic condition that runs in my family, Acute Intermittent Porphyria (AIP), due to some issues I was having with the medications. In June, 2014 the diagnosis was positive and the pain specialist told me she could no longer treat me due to the risks.
Back to square one. I sought out a neurosurgeon and found an amazing one here in St. Louis. He suggested MVD surgery, but I was not ready at that point. MY PCP handled the medications while we searched for a neurologist to handle my case. I got lucky in August, 2014 when I found a great neurologist who understood TN. She also confirmed the diagnosis and we started down the list of medications. I began taking Vimpat. This helped a bit, but due to side effects, we couldn’t dose it higher, so Trileptal was added. I started college during this time too. At the start, all was well. I was having no issues, the medications were helping, and all was well.
Then October came, and I ended up in the ER with a major flare. This was a wake up call that something had to be done, so I called the surgeon and asked to schedule an MVD. It was scheduled for December 17th and I made an appointment with him in November to have some questions answered. My attendance at school became spotty at best. Luckily I was covered by disability services and a plan was worked out. I ended up in the ER again in November with major pain. At this point, I was only on Trileptal due to cognitive issues, which were impairing my ability to function at school. I made it to my surgery date as well as I could.
The surgery went off without a hitch. No complications, was in the hospital three days, only one of which was in ICU. Everything was going great, and the staples came out.
The night after that (a little over two weeks post op), the pain came back. I ended up in the ER again, because nothing I was doing was helping at all. The TN is back, or possibly. It could also be due to the AIP, which can cause TN. I saw my neurosurgeon in January of 2015 and it was decided that I would have a balloon compression rhizotomy. It gave me no relief and I woke up in recovery in the same amount of pain, plus double vision. It turned out that the procedure caused a fourth nerve palsy.
February of 2015, I had my first legit admission for pain control. I just couldn't take it! The pain was horrendous and my neurosurgeon put me in the hospital for a few days. That is where I learned I had cluster headaches as well.
The fourth nerve palsy took several months to resolve and I had to wear an eye patch for that time.
In May of that year, I underwent my third operation, a Partial Sensory Rhizotomy on my left side. This entailed going in and cutting the portion of the sensory branch that controls v2 and v3 where it exits the brain stem. I woke up after that procedure in much better shape! I was very hopeful that this worked. A week after I went home though, I woke up with my incision bleeding! I was rushed to the hospital where my neurosurgeon was waiting to bring me to the operating room. I had a massive staph infection of my dura and skull. The titanium plate had to be removed and the craniotomy was left open. I Almost died! This put quite the damper on having my right side done. The anesthesia from this case also messed with me, and I was unable to really eat for a few months. I lived off of protein shakes. This concerned my neurosurgeon and my family physician, as I was losing a lot of weight! This luckily resolved by September of 2015!!
That October, the day before international Trigeminal Neuralgia awareness day, I had my right side done. I had a combined Microvascular Decompression/Partial Sensory Rhizotomy. Surgery went very well! I had a lot of pain in the incision area post op, but when I left the hospital, I was doing a lot better!
Sadly, as of now, July, 2016, I am still in pain. All of these operations and treatments did not resolve the condition, but did change the quality of pain I am in. I now don’t need to go to the ER as much to break the cycle and don’t rely on pain medication to be functional. This is a major plus! I take high dose duloxetine and a normal dose of Trileptal, which is so far the best combination I have found. I am not looking into further surgery, as I have been told It will only make my situation worse. I am still looking to optimize my medications to get better control.