Taming Chronic Headache Pain


Taming Chronic Headache Pain

Taming Chronic Headache Pain


Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over and over. A chronic headache or migraine pain sufferer will understand the long and tearful journey. Imagine the pain of a migraine. Now imagine enduring it for 76 unending days. Light, sound, and movement become the enemy.

It lasted for a glorious few hours. A small twinge has returned to the base of the skull area, but Gary says it’s so light now (He describes it as a one on the pain scale) he would be ecstatic even if this is as good as it ever gets.

 Living With Daily Pain

Gary has lived with pain for years. His daily headache level hovered around a three. Seven days a week. He learned to work and live with a chronic headache for years. His original neurosurgeon explained the pain was caused by a pressure change as spinal fluid moved in and out of the pseudomeningocele created when he removed his tumor from the C-2/C-3 area of his spine. Fixing it would be more dangerous than living with the pain. Come back when he couldn’t stand it. Twelve years and he was there. He couldn’t take days of a six or seven pain level. Hitting 10+ during the past year was the last straw. You can read our posts covering the search for relief.

Change Of Plan

When the neurosurgical department reviewed Gary’s latest MRI, it was their opinion the tear in the dura had closed. The spinal fluid movement was not to blame. Intracranial hypotension was ruled out since position change brought no pain relief. We discussed Dr. Levy’s hypothesis on active bleeding. The neurologist explained the next step would be a Greater Occipital Nerve Block. They scheduled an appointment with the pain clinic for February.

What To Expect

They say “a picture is worth a thousand words” but sometimes they make the unknown pretty scary. When you picture injections into the back of your head or neck, it’s no wonder most of us react with a shiver up the spine. You can stop right there.

We showed up at the pain clinic Friday morning and were taken into a small room by our pain specialist. He quizzed Gary on the position, severity, and details of his normal pain. INR results checked since Gary is on blood thinners for life and put us both at ease with his thorough explanations.

Gary took a seat and in a few minutes was given a slow injection, one on each side of his neck, 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 the injection entered. Patients also often experience a slight deadening of the scalp and ears from the local anesthetic portion of the shot. He said most people feel some headache pain relief immediately, but it would take three or four days for the full effect. Slight pain at the injection sites would be normal 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 noted slight dizziness (apart from the norm) but very little pain from the injections themselves. 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 back and went to bed early. The next morning the pain had dulled, but he said he could feel the injection points. As the day wore on he felt pretty good; he could tell there was improvement.

A Brand New Day

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





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  1. Antoine Wehbe - Reply

    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.

    • roriandgary - Reply

      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. Kathy Falco - Reply

    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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