Hello All! We had such a nice vacation! We were at Myrtle Beach and rented a house for the week. Now back to reality. Unfortunately my pain didn't take a vacation. I was in as much pain as usual. I was hoping my theory on being at the beach calmed the strikes in my ears as it did a few weekends ago. No such luck. :(
I went to the doctor that was supposed to give me the shot for ON. He agreed that I did not need that type of shot. I wondered if he even listened to me when I had my first visit with him. He even said, "Sounds like you have Glossopharyngeal Neuralgia." Can you believe that?? After we went through my symptoms again, he left the office and came back with no real news. He said that there was really no treatment in the surrounding area for GPN. I would have to go to California or some other state. He did suggest that I have the Gamma Knife. So, I am waiting on a referral to a doctor in Greenville, S.C. The pain mgmt doctor suggested I talk with this doctor and see what my options are. So we will see. In the mean time, I am going to ask my neurologist to put me on the Butrans patch again with the higher dosage. I was on the 10 before and it goes up to 20. I had relief for a month on the 10 so maybe the 20 will relieve the pain for longer. I'll keep my fingers crossed!
Denise, I feel like I am in the same boat as you. Going to a new doctor August 1st and I can’t wait. Getting notes prepared so I can remember to tell them all I have been experiencing and so that I can take notes too. My GPN has been back now since June 24. It is not as strong this round for which I thank God for every morning! Keep wondering if proper spinal alignment has something to do with it, I know I have terrible posture and it seems that I can swallow easier if I put my shoulders back and down and pull my head back. Not sure if this makes since but I am willing to try anything. Has the pain always gone to your ear? At first my was just a shocking pain in my throat, but in February when it was really bad there seemed to be pain shooting up to my ear also. Good luck on your pain management. I will have to look into the Butrans patch, 4800mg neurontin is not cutting it now.
Hi Sally. Sorry to hear about your pain. This is the most terrible condition. I have some really bad moments. Like today. I hate waking up and instantly in pain. I pray and pray that God will take this away. Still praying. The patch really gave me some relief for about a month. I am going to ask about being put on the 20mg today. I have an appointment with my neurologist. She says, “I see you’re still smiling” and I just kinda chuckle and let her know because of pain medicine. I have days that I feel so high all day. I can’t stand it. I work nights and I know that people wonder what is going on with me. I have a manager that sits right by me and I try not to say much when my medicine kicks in. I hate this!!! My pain has always been in my ears. Every now and then it will be in my teeth. I have experienced moments of not being able to swallow. The natural movement of swallowing without food. If I have food, I have no problem. I am going to tell my doctor about it today. It is kind of scary. I though about increasing my neurontin. I take 900 mg 3 times a day. No help from it. I don’t really know why I still take it. It may be what has made me lose weight. I have lost 12 pounds without trying. I would rather be chunky! Good luck Sally with the patch. It is great for a while. No high feeling and I felt back to normal. lol! As normal as I can be.