[holly777]

Hi. I am new here and looking for feedback about occipital neuralgia.

My 20 year old son was having bizarre headaches and a neurologist said he it was caused by his occipital nerve being irritated or entrapped - occipital neuralgia.

The neurologist didn't make a huge deal out, like it was pretty common. Frankly, we felt relief that it was not something more serious. Now, after doing research, I am very concerned that we are dealing with a chronic, disabling condition for which there is no actual "cure". I am aware that internet research can lead to nothing but the worst possible scenario cases, so I am trying to keep that in perspective. The neurologist has not given us any indication this is a horrible condition - my husband thinks I am reading/researching too much and freaking myself out!

He is on amitriptyline and got the nerve blocks on Monday, which I understand are diagnostic and well as helpful for the pain. As of yesterday, he was headache free, so they appear to be working. He is a college student, so he is very on edge about "how long" the effects of the shots will last. He has had several very bad days this past month and just wants it all gone! He has not had an injury so the cause (we assume) is tight neck muscles.

Any experience with this? Is it possible that (like some other muscle/nerve issues) this is just an acute situation that will heal with Monday's injections and he can continue with a "normal" life? Is there something specific about this particular never that once irritated, it never returns to normal? Hoping there are positive stories out there. Most of the information online is so negative and scary.

Thank you

[Kitt]

Welcome holly777.

[Dinkster J.]

Hi, Im new here too and came here to help feel beter about this disease that ive been deal with, Occipital Neuragia. like your son I have not had any accidents or anything to point to what actualy happened. Personally i feel that being as Automotive Tech for 20years but undo stress on these nerves.

Personally my migraines and associated symptoms (inability to concentrate, slow thought process and irritibility) has had me loose my job of 20 years. Im not trying to scare you or your son about his future, but would suggest to keep on top of this as much as possible , and try 2ndary opinions, ask lots of questions, and inform yourself as best as possible. Also having a support system of helpfull people will be advantageous too. Again, inform your self as best as possibe. GOOD LUCK

[lillyh]

Dinkster and Holly
There is a really good Trigemianl neuralgia website that covers all kinds of neuralgias and facial pains.(Including Occipital Neuralgia) It's called * I suffer from facial pain after a dental extraction and have learned alot from that site.(and this one) Hope that will help you..
Stephanie

[windrivermaiden]

this is a miserable disease. Everything you read is pretty much true to my experience, and the experience of the 2 siblings I have who also suffer. I've been enduring sind 1990, sib 1, since 1998ish, and the other from 2012.

Sometimes the drug's side effects are as bad as the pain.

Get a different neurologist, find one who has a speciality with facial, head and neck nerves. If they give you the oh this is common bs, find a different one. Shop till you get a good fit with your son and his neuro.

I have been pretty well controlled with muscle relaxants and Botox injections every 3 months. I did all the anti seizure/antipsychotic drugs and over all, they did more harm to my psyche than they did for the pain. They mostly made me so numb and nearly comatose rather than actually doing anything for the actual pain.

If you are near the University of California, San Francisco, they have a good neuro department there.

Be relentless. He needs you as his advocate.

[kdrdudek]

Find a good pain management doctor that does occipital nerve blocks and radiofrequency nerve blocks. There is an excellent one in Fresno Ca.
My daughter and I had no health problems other than asthma. We caught a nasty virus that took three different antibiotics to knock it out. Before it was gone, the migraines and facial pain started. It was unbearable. So many different drugs with little success and many side effects.

My favorite was it was our hormones. Really, at the same time and when we both were seriously ill. We suffered until my doctor got fed up with me coming in every couple of weeks and whining (his words, I have to live with it). He referred me to another doctor that said his first words "would you like me to help take your pain away".
He did an occipital nerve block right in the office and it was gone within a hour an stayed gone for months. I dragged my daughter (she was 14) down to the office and he did the same thing. Pain was gone. Now we go in every three months and have a block. Sometimes it only lasts one or two months but that is a whole lot better 24/7. Radio frequency last 6-9 months at a time. This doctor saved our lives.
Oh, and the hormonal thing. A year later, my sister in law called and she was in the hospital for three days from severe migraines. Never had one in her life. It started from this sinus/virus thing she got two weeks before. It also took three days in hospital and three bouts of antibiotics. Interesting.

Facial Pain: Experiences it a lot in the beginning but occasionally now. Went through a rough time recently that lasted 8 months. Demanded physical therapy because they wanted to put me on horrible side effect meds. I did some research on "sternocleidomastoid" and had the therapist concentrate on that area. Three visits in and pain lessened by 50% and by end of therapy was almost gone. There are many exercises that can be done. Its amazing what this muscle can cause when it flares up.