Headache

Taming Chronic Headache Pain

Occipital Nerve Blocks For Chronic Headache

It was Gary’s first pain-free moment in 12 very miserable years. Complete pain relief. I want to read those words over and over. Finally, a chronic headache or migraine sufferer will understand the long and tearful journey. Imagine the torture of a migraine mixed with the agony of a cluster headache for 76 unending days. Light, sound, and movement all become your enemy. Complete relief lasted for a few glorious hours before a slight twinge returned to the base of his skull area. Gary describes the pain as very light now, ecstatic if this is as good as it ever gets.

Gary’s daily headache level hovered around a pain level five, seven days a week. He was forced to live and work with a chronic headache for years. His first neurosurgeon recognized the pressure change might cause his pain as spinal fluid moved in and out of the pseudomeningocele created when he removed a walnut-sized tumor from the neck area of Gary’s spine. In his opinion, repairing the pseudomeningocle would be more dangerous than living with the pain. Gary should come back when he could no longer stand the pain.

Gary woke this morning without a headache.

Twelve years have passed, and he was there. There were days of six or seven pain levels. Finally, hitting 10+ during 2017 was the last straw. You can read about the long search for relief.

A Change Of Plan

When the Little Rock VA Medical neurosurgical department reviewed Gary’s 2017 MRI, it was their opinion the tear in the dura, and spinal fluid movement was no longer a problem. Intracranial hypotension was ruled out by neurology since position change brought no pain relief. We discussed Dr. Levy’s hypothesis on inflammation caused by blood infiltration from an active bleed triggering the headaches.

Our neurologist felt until the headache source could be found, pain relief should be our focus. Since multiple combinations of pain medications weren’t helping, he suggested the next step should be a Greater Occipital Nerve Block. They scheduled an appointment with the Little Rock Pain Clinic in February 2018.

What To Expect

A picture may be worth a thousand words, but sometimes that picture makes it scary. For example, are you hearing about a procedure that involves injections into the back of your head? Of course, most of us react with a shiver up the spine. But you can stop right there.

We showed up at the pain clinic on a Friday morning and were led into a small room by our pain specialist. He quizzed Gary on the position, severity, and details of his pain. The neurologist double-checked Gary’s INR level since he is on high-dose blood thinners for life and continued to put us both at ease with his thorough explanations. Gary took a seat and, in a few minutes, was given two slow injections. One on each side, at the base of his head into the occipital nerve area. I watched the entire procedure with no problem.

An occipital nerve block is designed to stop the pain sensation traveling through the occipital nerves. There are two occipital nerves, the greater and lesser. The injection is most often used to diagnose and treat cervicogenic headaches along with occipital neuralgia and has also been shown to provide pain relief for migraine sufferers. So it has two purposes, including both a diagnostic one and a therapeutic one.  

Arizona Pain Center

The pain specialist explained Gary might feel a slight burning as each injection entered and might experience a slight deadening of the scalp and ears from the local anesthetic portion of the shot. He told us most people feel some headache pain relief immediately, but it might take three or four days for the full effect. Feeling a minor soreness at the injection sites would also be expected after the local wore off. The entire procedure lasted less than 45 minutes, mostly spent chatting.

We waited a few hours in the hospital cafeteria until it was time for Gary’s swallow test for dysphagia. Gary mentioned he felt slight dizziness but very little pain from the injections themselves. So we went to his swallow test and then headed out for the three-hour drive home.

The local anesthetic wore off during the trip. Gary had a full-blown headache by the time we made it home and went to bed early. The following day his headache pain had dulled, but he could still feel the injection points. However, as the day wore on, there was an improvement.

A Brand New Day

Jump to this morning, day three, and the outlook is terrific. The real test will be when he looks up, moves his head around, lifts something, or gets down on his knees. Positional body movements have always brought instant pain. If this treatment proves a success, he will return for injections every three months and just maybe tamed his chronic headache pain.

Update 2020

Has It Worked?

The days of constant mind-numbing pain are gone, but it would be not very reasonable to think this would be a cure-all. The effects of the injections last, on average, 11 weeks. Since you may be limited to four sets of injections a year, you will have a week or two (five-week months or scheduling conflicts) where it’s wearing very thin.

The person giving the injections makes a difference too. Gary’s first pain specialist retired just before his last visit. His injection technique involved prodding the head and neck base aggressively to locate both the nerve and tender areas. The new doctor relied on her knowledge of anatomy to give the nerve block injections. Unfortunately, it was not as effective this quarter, lasting only seven weeks, so we plan to ask the doctor to locate the area closely.

Gary still experiences headaches but finds they often can be relieved in a few hours by a dose of acetaminophen and a little quiet. This strategy of pain management has been successful for Gary. However, if you’re experiencing chronic, untreatable headaches, discuss Greater Occipital Nerve Blocks with your physician.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, Livingwithss.com became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor livingwithss.com,

5 Comments

  1. Thank you for the info on this site. It is really great. I found out that I have SS about three years ago, I have lost some of my hearing, taste, and smelling, my main concern is walking, it is weak and I can still walk without the cane and the walker, but I feel that I might need to use them soon. I am a strong athlete, but I can not run on the threadmill without holding to the rails very strongly, if I let go, I will definitely fall. My question to you is from the info of others how have SS, how long before I will need the wheelchair. Thank you for your help and have a great weekend.

    1. I think it depends on what areas your hemosiderin deposits are located so every person will be affected differently. In Gary’s case, he could still jog in April 2014 but that was the last time. He started using a cane early in 2015 only when he was tired but needed it full time by the end of 2015. He still uses a cane for walking now but if we walk down the road where the ground is uneven he will use two aluminum hiking poles. He saw his primary care doctor last week and was given a consult appointment in early March for a gait and balance evaluation. He will start weekly physical therapy sessions after the evaluation. His doctor feels it may be time to transition to a walker part time but Gary wants to give therapy a chance first. He still walks a little on our treadmill by holding on to the side handrails. He does use a wheelchair now if we go somewhere he will have to do a lot of walking but it’s because he gets too easily tired and isn’t able to keep up.

      I think (hope) the progression to Gary needing a wheelchair on a permanent basis is still some years away. Hopefully never if his Ferripriox is successful. The symptoms move very slowly at first so hopefully, you also will have many years before you would arrive at that stage. Some in the chat group are elderly and they still walk with just a cane. There really are no exact answers to your question I’m afraid.

  2. Thank you Rori and Gary for this site and all the info that you provide. It is invaluable source for all of us SS sufferers! I hope this procedure continues to offer improvement in your headaches. KFalco

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