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

These comments and ideas are very helpful. I read them as soon as they come in.

Thank you All
Suszy39

@suszy39 I have never had sharp shooting pains that go up my head. I get pressure on the right lower back of my head. I am not sure I have Occipital Neuralgia. Neither is the second Neuro-Opthalmologist. Even though I am taking Gabapentin I get break through pressure. I will see someone in January and maybe get more information who knows? @rnlorena

I am not a medical professional so am hesitant to post as this is a serious topic, but here is my experience.
I am a person who is fortunate to never get headaches. A couple months ago, I had level 10 pain on the right side of my head-very targeted at the top, near the ear and at the jaw. Went to the ER where CT scan was performed and nothing noteworthy found. Neither trigeminal neuralgia nor occipital neuralgia totally line up as positive diagnosis. Muscle relaxer prescribed as well as ES Tylenol and ibuprofen but none of this touched the pain. PCP prescribed carbamezapine and it worked for me. Gradually weaned off but I am still fine.
This is an anti seizure anti psychotic drug used off label to “settle nerves” and is considered a serious drug. I feel for those of you suffering from head pain and hope you get some relief.

@cmdw2600 Thank you for you experience

@rnlorena I was on Gabaoentin for some time, however I did not see any improvment, I slowly
took myself off of it. I have my Nerve/Block shots in Jan. feeling a little better after my "flair Up" headach.

@suszy39 bless your eyes and heart. I have ON along with trigeminal neuralgia, atypical trigeminal neuralgia, bilateral-trigeminal neuralgia. It’s crazy to me that there are a few surgeries for TN but none for occipital neuralgia. Gabapentin is a drug like no other. It either works around 600mg or the doc keeps increasing the dose thinking the problem is you. I was up to 5200mg. Along with my 13 other meds I took. The whole time I was in excruciating pain living in my bed, drugged up from gaba and I took a year to wean myself off.

I’m happy the injections help even a little. Where are the injections going? Back oh the skull? Just know you are SO STRONG. Brave! Cry if you need to. Bi love from mi.

@irishgirl2005 Thank you for the concern. People have no idea the severeness of it. I feel I
am getting worse not better. The right side of my neck, muscles in shoulder and back, then as
the Flair Days really catch hold the pain up the back on my head. ( this was the worse). Ice pack all night long. I e-mailed my Pain Dr. about
the person that was cured by a combo Valium/Modrol? no word yet!!! To your questions I usually get 5-nerve Blockers sometimes in my neck other times in the skull. He is very good at
these then inbetween My Nureglist PA gives meTrigger Point shots, they help relieve tight musle/ When they get better I get to a some what normal Life, playing my music, helping my Granddaughters with up coming wedding April. it really helps to hear other UNDERSTAND

@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

@rnlorena I do hope this takes care of your issue at least for time being. They way it looks to
me if a person does suffer from ON it will be an ongoing treatment. I have four more days
before I see the Pain Dr. sometimes they say see your primary. I sometimes get overwhemed.

Lets keep in touch.

@suszy39 I had a nerve block and it has made a difference. The purpose of the nerve block is to see if the occipital nerves are the culprit. So having the nerve block I shouldn’t have any issues in my head for now. They will sometimes do up to two or three before they would do an ablation of the occipital nerves. They want to be definitely sure before they do an ablation. When January 17th hits it will be 11 months since I had head pressure and blurry vision and also had seen Doctors and gotten nowhere. Now I finally feel like I am getting somewhere. I will see my Dr. on February 10th and when I find out what is next I will let you know. The nerve block was so easy. I can tell you I had head pressure for many days and it sucks. The ablation would burn the occipital nerves and eventually of course they will regenerate. That could be possibly 6-12 months or more. Everyone might be different. But ablation can be done again. I will keep in touch for sure. It may be a bit but I will let you know. @rnlorena