Occipital Neuralgia Headache: Terrible pain lasting weeks, what helps?

@pierwell I was wondering myself. I had one ablation a few years ago (no improvment). Pain Dr.
said it usually isn't a good sign for a 2nd. But I think I will ask my new Pain Dr. Hoping our days
get better....

@suszy39 So the procedure is to burn the occipital nerves. So an ablation with no improvement? Could they have possibly not gotten the entire nerves ablated ? Just a thought? I am ready for an ablation. Based on what you guys have said I most definitely will have questions. I have already done a deeper dive into this. (More reading). Sharing information is a good thing and I appreciate everyone’s information. After my appt. I will come back and let you guys know what occurred. Meanwhile I will be writing questions that are popping into my head right now. I myself have gone through a few Doctors. I think it is important to have one that you feel comfortable with. I myself have met a few that make me wonder how they ever became a Doctor. My hope for all of us is to get better! @rnlorena

@rnlorena Best of Luck today this could be your answer.

@suszy39

@rnlorena I’ve had two ablations with minimal effects.

@pierwell I’ve found ablations hit and miss. The one I had 4 years ago worked great. It took about 8 weeks for all my symptoms to go away and then got 20 months of full relief. I thought ON was behind me. Then it came back quickly and my Pain Specialist had moved out of the area. Second doctor claimed to have done the same procedure, but seemed to make my pain worse! I went a multiple medication approach (Gabapentin & Duloxetine) plus a CGRP Inhibitor and slowly pain improved for a year. Then came back again, only this time it’s been 24x7 intense pain, dizziness, blurry vision, and occasional vertigo for 9 months. New doctors took over my case last summer and Pain Specialist was able to get all of my old medical records. Seems the second ablation doctor didn’t do the same nerves and lies about it! I’m scheduled for another ablation in early spring. My insurance company requiring two trial ablations (typically it’s with lidocaine) 3-4 weeks apart before the real ablation, So insurance is making me wait from December when my doctor went for prior authorization until end of March for the real procedure. Then if like the first ablation, symptom reduction was slow for 6-8 weeks more. I’m out on disability and will probably lose my job since they only had to hold my job for 90 days. At this point I’m also starting to explore both PRP and Stem Cell injections which insurance will not cover.

@suszy39

@rnlorena here. Just wanted to tell you a few things. I had gone to Texas and was diagnosed with Occipital Neuralgia. All that Doctor did was push on the right upper side of my neck and asked if it hurt. It did but not bad. So I was diagnosed with ON. When I came back I started looking closer to find a Neuro-Opthalmologist and I did in Mobile. It's beside the point and I don't know why I didn't really look there first. Anyway That one in Mobile told me that she didn't think I had Occipital Neuralgia. I didn't think I did either. So my regular Doctor sent me to pain management. I saw a Doctor there and told her what the two Doctors had said. She pressed where the Occipital Nerve was and it was tender but I don't get the sharp pains and things like it claims in the Occipital Neuralgia definition. She told me I could get a nerve block and if it worked then it would mean something. I had that done today. It actually worked for me. I told her I had been having daily head pressure. So today when I got up I noticed head pressure (it wasn't too bad but I didn't take any meds.) I went to the clinic and had the nerve block and it took away the pressure. So I see her again on Feb. 10th. The fact that the nerve blocked worked says a lot. I may possible have one more nerve block and then they will burn the occipital nerves or they will go ahead and burn them. Depends on what the Doctor says. Even if they burn the occipital nerves they will re-generate so it would have to be re-done in the future. But I think it would give me a much better deal because I won't have to continue this head pressure that I get and it causes my blood pressure to go up. I know how to handle my blood pressure. So we will see. I will come back and let people know how it went. @rnlorena

Hi!
Im 28 years old and have occipital neuralgia for the last 10 years. My symptoms are a-typical, slowly getting stronger until they reach 7-10 on the pain scale and last for 14-30 hours. I have those attacks usualy 2 times per week.
Im getting Oxcarbazepine. That helped me to get it down to 1 time per week. Also, for an attack im currently using morphine. Opioids are the only medication that helped me to be pain-free in an attack.