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

@sherminator The last "Flair Up days" lasted almost a month. But I do believe the help of a book I ordered :Treat Your Own Neck, by Robin McKenzie has helped when I ordered the Cervical Roll. You put it inside pillow case therefore you can sleep on your side and the pillow
is giving your neck great support. I would wake up stiff neck, I no long so. Then I take a very Hot
Shower, and do my neck erexceries that the book lists plus a few Dr. Saunders on Net does.
I believe my poor posture is to blame for some but who knows about the remainder.I will continue to have trigger shots, and nerve blocks and for get about the meds... thats where I am plus resting a little more........Time will tall if all this is helping???

@suszy39 I was diagnosed with Occipital Neuralgia by a Neuro-Opthalmologist in Texas and the only thing she did was press on my neck and ask if I had any tender spots when she did it. I did feel a spot or two that was sore but nothing really bad. I went out of state because I could not find any Doctor where I live to give me a diagnosis. They blamed it on my blood pressure and that is not it. I have had pressure in one place at the back of my head. No sharp shooting pains. So they put me on gabapentin. I have been taking the gabapentin but I don't get side effects from it but I still get head pressure. When I get head pressure my blood pressure goes up. I am in control of my blood pressure. So then after I came home I decided to look closer to home and found a Neuro-Opthalmologist in Alabama and she thinks I don't have Occipital Neuralgia. I have read all about it and I don't have the sharp shooting pains in my head and the other things it says. I am not sure I have it either. So I talked with my Doctor and he is sending me to a group of Doctors who do pain management and more. I spoke with someone in the office today and she told me they also burn the nerves if needed. She told me what to look at on their website it explains a lot. So If I get numbing plus a steroid shot the steroid will make my blood pressure go up. I know this because I had an injection in my back and it did just that. I have been on B12 for some time now. It will be another 30 days before I get to see this Doctor. The appt isn't till January. Then they talk about what they can do for you. So January makes it 11 months that I am still waiting for more help. Gabapentin is one of the medications they give for Occipital Neuralgia and as I said before it hasn't caused me any side effects. I am grateful for that Yet I still get head pressure. I am surprised you are only getting injections. So the shots only last for about three weeks? Since it will be 30 days till I see this Dr. I will have to come back with some responses on what they can do for me and let you know. It is like the goal post keeps moving away from me. I also am aware you can only get so many steroid shots in a time frame. What kind of Doctor did you see to get diagnosed? Did he offer you any type of oral medication? I look up all meds so I am aware of any side effects. I research everything because that helps me to think about what questions to ask. @rnlorena

@rnlorena Hi, have you seen the new doctor yet?

I can relate to all the comments here. My Occipital Neuralgia one side of head or the other. It’s sudden lightening bolt like strike pain from neck to side of head. It is so strong. It makes you jump and shout “Ow”. Next day might do the same on other side. Right now I can feel a threatening little jab warning me it might be a big blast of pain coming. The left side of my face is painful,and ear,and teeth. It brings me to tears every day.
I can’t take Gabapentin side effects terrible. I do take B vitamins and 400 mg of Magnesium every night. The Magnesium helps with sleep,so that is just at night. I don’t wish this on my worst enemy. It is called the ‘suicide disease’ by some doctors. I’m not doing that! I’m afraid of shots in head. I don’t tolerate steroids. Doctor said they are painful to get. Is there doctors who just treat this.

@sherminator I have seen the new Dr. and I am seeing her again this week. I need to find out when we can work up to an ablation. I have already had one nerve block and it worked. Regardless of that and also my taking of Gabapentin I am still getting head pressure. So I see her again on Tuesday. I definitely need a timeline. IN less than one month I will have been at this for a year. It is really getting old. @rnlorena.

@sherminator I am not discouraged but I am more frustrated then anything. The time it takes to get things accomplished moves at a slow period of time. I do know that I am fortunate in some ways. I see the Doctor on Tuesday so I intend to ask her what is next. I had one Dr. tell me I had Occipital Neuralgia and another said I didn't. I don't think I have it either because of the symptoms. I do get head pressure but what I have doesn't read like the ON symptoms. I may have to have another nerve block before I have an ablation but that is simple. I most certainly do not want to have another time of head pressure and blurry vision. That was very different from the head pressure I have now. I did ask a Doctor that I saw that question. He told me I could. He said I would have to go to the ER. What fun that is not. I most definitely feel for you guys more than me. I do know I have company and I appreciate you guys and your comments very much. @rnlorena

@brenda1944 I had a nerve block and didn’t even feel it. The nerve blocked worked. Which is a good thing. I went to a pain management Doctor who not only deals with what I have but other issues also. I do take Gabapentin but I still get head pressure. So that is why I am going to these Doctors.
I don’t get the pain like it describes for Occipital Neuralgia I only get head pressure. That’s enough to deal with. Please read my other comments. NO Doctor should ever tell you that they are painful to get. That in my opinion is awful. Come February the 17th it will be a year since I started with head pressure. I go to pain management Doctors who don’t just treat pain they do other things. So again I had the nerve block and it was not painful. It worked. So I may have to have one or two more depending on what the Doctor thinks but I am really okay with that. The reason they do those nerve blocks and if it works it tells them that it is your Occipital nerves that are the culprit. So they may do more than one to make sure that’s it. Then they can do an ablation (burning the nerves). They do that under light sedation so your visit might be a total of about 2 hours. Then you go home. Nerves will regenerate between 6-12 months. I am okay with that. They can do it again. If you were to get a nerve block they may not have to do a steroid. That would be a good question to ask. I had gotten a steroid shot in my back over a year ago and the only issue I had it made my blood pressure go up but I handled that. A steroid shot doesn’t hurt. How do you not tolerate a steroid shot please let me know. The nerve block (shot in the head was nothing). IT did not hurt and only took less than maybe 5 minutes. I did not feel it at all. I was surprised by that. I really advocated for myself on many things. I have worked in healthcare and I myself have seen a lot of it go to heck. The group of Doctors that I went to live about 20 minutes away from me. I even drove to Texas to see a Doctor in one of many visits to different doctors and it was worth it. I am so sorry you are having so much pain. I would definitely look into pain management Doctors. The doctors that I see also sees patients with I am sure other types of pain like backs, shoulders you name it. Things like that. Until my regular Doctor suggested them I was not aware because if I was I would have seen them sooner. @rnlorena