The Railroad Spike Of Chronic Headache Pain

Living With Chronic Headache Pain

Superficial Siderosis Headache

Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your head. On the not-so-good days, it feels like a hot railroad spike through the base of your skull sprinting up to your eyes. Pain that radiates into every part of your head, creating excruciating agony.

It’s A Headache Not A Marathon

Gary has always tried to control his pain with over-the-counter pain medications, sitting quietly with his eyes closed and keeping his neck still, but this hadn’t been working the last eight months. The severity is increasing along with the duration. This June, an unusually debilitating headache took hold and wouldn’t ease up for 76 DAYS. He agreed to a trip to the Shreveport VA emergency room, and even though they did the best they could, it didn’t help.

They ran multiple tests, warned him of the dangers of too much acetaminophen, and treated him for a tension headache with a lovely shot of something they said would make him feel so much better. His pain eased up for 30 minutes into our 90-minute drive home and roared back.

On The Road

The trip to the E.R did help speed up our VA PCP’s request for neurology consult at John McClellan VAMC in Little Rock. Overton Brooks VAMC had been in the process of trying to hire a new staff neurologist for months, and they realized Gary couldn’t wait.

The neurologist started Gary on 500 mg of Divalproex 24HR in August. He is still taking acetaminophen when his pain stays above a level of 6, but he has not had another marathon headache. He has been advised to go to the emergency room anytime the pain is a 9 or higher, but he insists on powering through the pain. We return to the neurologist in January, so maybe they will reevaluate his pain management plan.


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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,


  1. About 0 yrs ago I couldnt do three days without a ‘migraine’. These headaches got so bad I had to call a ambulance for that long bumpy ride 35kms to the hospital. Even after pumping drugs into me the pain would drop from 11 out of 10, to 9 so not bad but sure as hell not enough. It got so bad bad thoughts started creeping in to end it it was so excrusiating. Now all i get are persistant dull thumpers or one spot thats like a red hot needle going through the skull. Sounds kinda ET! Lol After diagnosis it at least let me know why,because no one had the. Answer

    1. Gary goes back to his neurologist in January. They had noted the possibility his headaches may be intracranial hypotension related. I know he’s had multiple scans of his head. Our previous doctors seem to have tunnel vision, always looking for the predictable. Gary has a tear in his dura at C2-C3 so leaking CFS fluid and an active bleed might explain why they haven’t had any success controlling his pain.The last time I messaged the nurse her suggestion was to apply an ice pack.

      1. I can totally relate. I was told by my local neurology office that they didn’t know much about this rare disease. They were not proactive in helping me understand what the diagnosis of Superficial Siderosis entailed. I felt and still feel they are comfortable with just monitoring my decline. In fact, I was told of my diagnosis by a nurse, over the phone. When I tried to ask questions, she said, “Dr. doesn’t know much about Superficial Siderosis, but if you want to know more, you can go online and bring it up to learn more”. That’s when my daughter started researching and found Dr Levy at Johns Hopkins. What a blessing, to meet with a Dr that could explain what I was up against, and prescribed Ferriprox to help pull the hemosiderin from my Brain and spine.
        Thanks be to God, that I have such a supportive husband and children.
        I am very blessed and very thankful! ?

  2. I too am grateful for this blog. I had a horrific headache as you describe over 30 years ago. Dr Levy said that was most likely the beginning of my Brain micro bleed. I was diagnosed April 2011, and have been on Ferriprox since Sept 2012. I was blessed that my daughter did some research and found Dr Levy at Johns Hopkins. My husband drove me from Peoria IL to Baltimore MD to see Dr Levy. What a relief to have found a Dr that could explain what Superficial Siderosis is all about, and prescribed Ferriprox to help me.

  3. I’m thanking God this am that this site has been presented to me.
    Was diagnosed recently w SS, almost assured the spinal surgery I had 1-28-2003 to be the cause. I was also born w very rare situation in 1950, so nothing is positive.

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