Head Gnomes: The Origin Story - or - The boring background of my endless headache

This post can be skipped. It is simply a history of how my headaches started and how I came to my decision to try ONSTIM.

In 2008, these gnomes armed with pickaxes and ice-picks took up residence in my head (Or at least that is what I thought...) Doctors didn't completely agree with my self-diagnosis.





I have been a migraine sufferer since my early teen years. I eventually had them mostly controlled with the help of Topamax, an anti-convulsant medication used for prevention and traditional aborting type medications for when they would break through, such as the menstrual migraine.

The headache that began in 2008 was different. I knew this wasn't one of my typical migraine headaches (The lie in a dark, silent room for 12-24 hours type). This was a constant mid-grade temporal/occipital headache accompanied by intermittent ice-pick-like pains in my temple, eyes, and mostly directly behind my ears. I also had this awful pain and stiffness in my neck. So, I took a day off work to visit my neurologist.

DIAGNOSIS 1: Icepick Headaches (idiopathic stabbing headache)
He gave me a medication typically used for this condition...it failed...
Back to the neurologist...he scheduled me for a CT scan. I went to have the scan, but later that night, I was struck by so much pain...I went to the Emergency Room. (Expecting I'd probably receive a shot for a migraine)

In the hospital:
By the time I arrived at the the hospital, the confusion and memory loss had reached the stage of not knowing my own phone number. The doctors thought I may have a more serious condition and did another CT Scan. Then, they did a Lumbar Puncture (Spinal Tap- a puncture into the subarachnoid space of the lumbar region to obtain spinal fluid for diagnostic purposes.) Which showed a slightly elevated white blood cell count, and a high spinal fluid pressure. So, they thought I may have Diagnosis 2A. viral meningitis or Diagnosis 2B. Pseudo tumor Cerebri (Intracranial hypertension or water on the brain) and sent me home with pain killers and orders to see my neurologist within 24 hours. Note: The painkillers I received, and the Morphine administered in the ER didn't alleviate the headache pain.

Back at the neurologist-
He said he wasn't worried about the wbc being slightly high.... "Probably nothing.", he said... and he told me my weight and the position I was in (fetal) while having the Lumbar puncture in the hospital, would account for a false increased pressure....(Found out the faulty logic of all of this quite later)

DIAGNOSIS 2c
Occipital Neuritis
Because of where I was having pain, he thought that we could alleviate this problem with an Occipital nerve block (a procedure where anesthetic agents (lidocaine and bupivacaine) are injected near the occipital nerve on the back of the head near the base of the skull on the side of the migraine headache.) So, I had these injections....they failed.
He also put me on Neurontin to help with the nerve pain. Needless to say, it didn't help.

by this time, I had missed quite a bit of work (as an Artist and Graphic Designer) and my confusion, pain, balance issues, and aphasia were extreme while working. I still have not returned to being able to type, think, communicate, or remember things as well as I was once able.

I was too often leaving work early and spending the rest of my time crying myself to sleep. Luckily, I had FMLA paperwork already filed due to sleeping disorders, so taking time off work wasn't yet endangering my employment, though I wasn't able to work enough in a week to support myself.

There was a night when I called the neruologist on call and he instructed me to try an abortive migraine medication...(I'd tried 3 so far, and none of them had helped) He also told me to take a pain killer after that as well as additional neurontin..."Really just try taking anything you have available.",...assuring me it couldn't hurt.

Then my neurologist called me.

Concerned that I was still in pain and nothing was helping, he looked again at the results from the hospital and became concerned with the previously mentioned white blood cell count. He wanted to schedule a second Lumbar puncture. (This one was done sitting up and  required me to lie flat on my back for 2 days) So I did. I stayed at my mothers house so she could help take me afterwards. He also prescribed another medication, Amitriptilyne (Elavil). A sedative medication used to treat headaches to ensure I could get sleep. So, I would take a medication to sleep...and wake up and take a medication to stay alert due to my sleep disorder (Which I should mention later turned to pain induced insomnia)

DIAGNOSIS 3 INTRACRANIAL HYPERTENSION

So...I wait...

and then he calls and tells me. Everything is normal. And we schedule a Contrast MRI to see if there is anything we may have missed in the CT Scans....
That was actually an interesting experience. I was offered headphones with music (MRI machines are very loud banging things) But, I opted for headphones without music. That way, it wasn't too loud, but I could still hear the awesome sounds it made (Excellent industrial Trance feel)

So...I waited...

and he calls to tell me he found nothing irregular. Back to the neruologist. He increases the dosage of Neurontin, Topamax, and Elavil and says:

DIAGNOSIS 4: Back to the beginning. He tells me this is Static or intractable migraine (A migraine headache that doesn't go away) Well...I'd had a headache for 4 months at that point with the recurring stabbing pains in my ears, and taking several medications that weren't helping and basically kept me in a state of dazed.

During all of this, I had also tried for the first time Massage, Reiki and Acupuncture. (All wonderful but not really in my budget or with lasting results...I would later revisit many of these and more)

When next I saw this neurologist, he basically said I was drug seeking (Though I had already informed him that none of the narcotics or any of the other drugs were helping and I didn't see the point in taking them) Personally, I think he viewed not being able to help me with a standard diagnosis and prescription a personal failure, so it must be my fault.

In these situations, I think it is important to keep in mind that it is the condition, not the patient or doctor who is to blame.

So, at this point, I was no longer able to maintain my job and I applied for Disability. My employer was very understanding and assured me that once I had my headaches under control, I would be able to come back to the company. That was almost four years ago, and the company no longer exists. Anyhow, a change in employment (none) meant a change in health coverage, and I was forced to go on state run medical care. So, this meant a new primary care physician and in turn a new neurologist. (As well as a detour with an Endocrinologist to see if something else could be the headache causing culprit)

This new neurologist was a great doctor, and really focused on helping me find a diagnosis and appropriate treatment. I continue to see this physician, but only for my sleeping disorders, not for my headaches. But, diagnostically, we ran the gamut together... More CTs, MRIs, EMGs, and every other acronym handy in these situations. And he tried several medications as well...none worked, and most I can't even remember. In the end, he decided there was nothing more he could do and sent me to a headache specialist. My reaction, "There are people that solely specialize in headaches!?! It has been two years, and we couldn't have done this a little sooner?!?"

The Headache Specialist is fabulous, and I don't know where I'd be right now without this man. After our first encounter, I finally had a diagnosis! This felt like reason to celebrate, because at least I knew I didn't have a brain tumor or something more ominous or fatal. He was able to put together my other symptoms, runny eye, predominantly one-sided, nasal congestion on the affected side, etc...and we have Hemicrania Continua.

FINAL DIAGNOSIS
Hemicrania Continua is typically diagnosed by using a trial of Indocin, as HC is completely responsive to the drug and if you get relief you have your diagnosis. Unfortunately, it is unrealistic as a treatment, (though it is pretty much the only reliable one available) because it causes extremely damaging gastric side effects. My trial was not as long as it should have been due to pre-existing GI problems so, I never got to experience full relief.
But, through ruling out all other possibilities, and based on symptoms, we had our Head Gnomes!

Then we started trying to find an effective treatment ...which has proven unsuccessful, bringing me to this point.

Some other things I have tried include but are not limited to:
Drug Trials I don't really remember well because they were short-lived and many
Massage (Including Cranial Sacral and Neuromuscular Therapy)
Physical Therapy
Reiki
Acupuncture
Heat/Cold
Anticonvulsant medications
Nutraceuticals and herbals including: Boswellia, Cat's Claw, L-lysene, and others
Certain Blood Pressure pills such as Verapamil
Super doses of Melatonin
Oral Analgesics to help numb face and head
Occipital Nerve Blocks
Supraorbital Nerve Blocks
[When vision issues became more severe, in case I had IH, I had yet another Lumbar Puncture hoping it would be theraputic as well as diagnostic. This ended with a spinal fluid leak and subsequent blood patch to end a post dural puncture headache-Oh how we can tell all of these headaches apart! Due to a slightly elevated pressure, we tried Diamox for a short time...Horrible side effects, only helped vision issues and not the headache]

Was Vorbei ist, is vorbei.

So...here I am. Hemicrania Continua is still endearingly referred to by those close to me as my Head Gnomes and my pursuing Occipital Stimulation as a possibility as the Electric Fence. (With additional references to: Batty Koda from Fern Gully, The Borg, The art of H.R. Giger, and various other Bionic or sci-fi personalities.  This should give away... I'm kind of a geek, as are a number of people in my life.)

I have now spent almost four years with a headache that waxes and wanes in intensity. Each day is a take-it as-it-comes experience combined with knowing that what I do today, I will pay for tomorrow. I try to live on a get-at-least-one-thing-done-a-day basis, regardless of how minuscule that thing is.

I now have a great team of doctors. I have a fabulous support system of friends and family who have seen me through the worst days and help make the better days better and a partner who I can never be thankful enough to have in my life in Aaron who will be with me for this new step, to a hopefully more productive and less painful new year.