Who knows about occipital neuralgia?

Hi @pierwell, did you forget to mention that the shooting pain is excruciating?
I've had this for over a year and it's getting better now with less frequent attacks.
One thing I've learned is not to initiate movement with my head, but with my body.
Be careful when putting your head down (to read or use your phone) - try to keep your chin level.
I've gone to PT a number of times without much relief.
I also have severe arthritis in my neck.
I bought a shiatsu massager with heat and that helps. I usually use it for half an hour everyday.
I have a heating pad, specially designed for the head and neck that I've started using every night.
I also use myofascial release. There are a number of videos on YouTube. Dr. Alan Mandell has some techniques. They help somewhat.
My doctor prescribed Baclofen, a muscle relaxer specifically for the neck and head. I'm not sure it helps, but I just renewed the prescription.
After heat treatment, and before going to bed, I apply a homemade concoction of peppermint oil and jojoba oil. That really helps! The incidents of shooting pains have decreased since I'm using it. Also I lost the feeling of tingling numbness on the side of my neck.
I do keep doing the exercises and stretches I've been given and have resisted the steroid shot.
I need a shoulder replacement on my right side which complicates things. Most of my head and neck pain is on the left side, and sometimes in the center of my head.
I also found a cervical pillow that's pretty good. It has a depression in the center so I sleep on my back now.
Good luck. This is the worst pain!

Don’t be afraid of the steroid shots. Unfortunately they will only give 3 doses/year but if you have a trip or big occasion, they can really help!
I’ll try some of your suggestions. Thanks!

I have seen 4 doctors and two say I have ON and two say no. Now what to do? All doctors are neurologists

Unfortunately, I can't get the shot locallly, would have to leave home for a day, and I am caregiver to my husband with Alzheimer's so that would be difficult.
With all the things I'm doing, those sharp shooting pains are decreasing so I'm thankful for that.
Thanks for your input. I'll keep the info you provided in mind!

I also care for my husband with Alzheimer’s! The stress doesn’t help our achy heads!

HI @lakesofdelray,
Have any of the doctors recommended any remedies?
Have those that said you don't have ON said what they think it is you have?

True @pierwell, I often find myself clenching my jaw!

I struggled with occipital neuralgia several years ago. It is terifically terrible. Occipital nerve blocks helped for a short period of time. I cut up lidocaine patches and put them on my head. Ice was my best friend. What resolved it for me was physical therapy with a myofascial release component and weekly massages. I joined massage envy. Tight upper back and neck muscles contribute to occipital neuralgia.

PT. Old news. Shots thanks for the reply

One said that it’s coming from my neck. Go to pt. I have gone so many times before it never helps