Did you know that you need to be able to think clearly to function at work? with your kid? in a marriage? Yeah well that all goes out the window when you are on high doses of two anticonvulsant medicines. I knew it was time to do something when I could not comprehend what I was reading off, I started to question my boss and I could not read out loud. Plus why experience all this when clearly the pain is still there?
I went back to the doctor and they decided to drop my gabapentin dose from 2700mg a day to 1800mg a day over a span of two weeks. I was terrified. I knew the pain would increase, but I knew it had to done. At the very end of the two weeks I had a 2 day work conference. Let’s just say that was a WHOLE lot of fun! (Completely sarcastic) I was in excruciating pain through the entire thing. I wasn’t able to spend time with my other coworkers in the evening. I went to bed and took my max amount of break through meds and hoped the sleep would make it better the next day. It didn’t. The weather did not help at all. It was rainy and storming. The ride home was even worse. Those days are the hardest not to let this completely get me down.
I’m fully down to 1800mg now and have had more pain than I can remember at the beginning. My pain doctor wants to implant a neurostimulator on my Stellate Ganglion which is located in front of my spinal cord at the C6 level. I questioned how this would work considering the injection didn’t provide that much relief. In a moment of desperation I agreed to start the process of insurance approval. I had to complete a psych evaluation (yes I passed!) but it was pretty much a joke.
I know the complications that can come from stimulators, my stepdad had one for his back. I needed someone to talk some sense into me. I went and saw my NP knowing she would help talk me through the pain. We decided that I would not do anything until I saw Dr Casey for a second opinion.
Call made…appointment set in 3 weeks. April 18th.
Well lots of things have happened since my last post. I have now had 3 sets of injections. They all majorly sucked. The medicine changes have greatly helped decrease the intensity of the pain. I had the MRI that my doctor requested and once again is came back negative for any abnormalities. Basically all that says is there is no tumor or evidence of MS. I know there can still be a compression even though it is not visible on the MRI.
Injection #1 – Stellate Ganglion Block
This first injection wasn’t too painful to experience. My neck was pretty sore but nothing some ibuprofen couldn’t take the edge off of. My excruciating scalp pain was pretty well instantly relieved and really has yet to come back. Some time it will still rear it’s ugly head. My ear pain was calmed for about a week, which was a nice break.
Injection #2 – Supra Orbital, Supra Trochlear and Maxillary
This injection was hell. During my exam before my doctor found a new trigger point (YAY…not) I was in a full blown attack going into the procedure. During recovery the nurses put an ice pack on my face to help with the swelling and unfortunately all that did was put in into excruciating pain. It took about two week for the steroids to really start working and I managed to be pain free for a week free. That week was amazing and almost eerie. I had been in so much pain for so long I forgot what it was like to be “normal” again. Once the pain came back it was a bitch. Man. I don’t know what I did to piss off the TN gods but geesh. The follow week was awful waiting to go back to see the doctor for the third injection.
Injection #3 – VII Cranial Nerve & Repeat Stellate Ganglion Nerve Block
This injection hurt like hell. It was not fun. He did my neck first for the Stellate Ganglion and then the VII Cranial nerve. This one was just in front of and below my ear. It was very uncomfortable. The pressure he applied after the injection put me into another attack. (insert eye roll). The next several days were extremely painful and then once again I experienced pain free days! This time it was only 4, but hey it was a chance to be normal again. Sometimes the pain of the injections is completely worth it just to have a small window of relief. Once again the pain has come back with vengeance. 😦