May 2008, Final exam time quickly approaching and my head hurts... ok, more than hurts, I've had a headache for 3 or 4 days now. Losing track of just how long it's been there, I just know it's not going away.
I started keeping a bit of a journal, tracking the intensity of the pain, the ER visits, and the DR visits. I also tracked the suggested diagnosis and treatments at the time.
Started out with swollen neck glands, ear and headaches - Went to Urgent Care (walk in clinic) and was tested for Strep (negative), diagnosed with sinus infection and to take Advil Cold & Sinus formula. About a week later, back into the clinic with same symptoms. This time, doctor isn't sure what's wrong, prescribed Naproxen (nonsteroidal anti-inflammatory drugs (NSAIDs)). No improvements, some pain control using OTC (over the counter) acetaminophen with codeine.
A week later, same symptoms, however pain meds aren't touching it. Went to local ER - Doctor's diagnosis was dehydration - drink more water and stop medicating. I drink a lot of water to begin with, at the time I was drinking anywhere from 5-8 500ml bottles a day, so dehydration definitely wasn't the problem.
This pattern continued for another month, with additional symptoms such as severe pain over temple areas, inability to tolerate lights, movement or noise. I also discovered that my scalp was extremely painful to touch, brushing my hair was torture. I was rating my pain 10 on the pain scale.
Wong-Baker FACES Pain Rating Scale
Stemetil belongs to a group of medicines called phenothiazines. It helps to correct chemical imbalances in the brain, allowing it to function correctly. These chemicals may also affect the parts of the brain which control nausea (feeling sick) and vomiting...used to treat nausea, vomiting and dizziness due to various causes, including migraine (severe headache).
Toradol is in a group of drugs called nonsteroidal anti-inflammatory drugs (NSAIDs). It works by reducing hormones that cause inflammation and pain in the body.
Benadryl is an antihistamine. Diphenhydramine blocks the effects of the naturally occurring chemical histamine in the body... used to treat sneezing; runny nose; itching, watery eyes; hives; rashes; itching; and other symptoms of allergies and the common cold...also used to suppress coughs, to treat motion sickness, to induce sleep, and to treat mild forms of Parkinson's disease.This cocktail got the pain down to around a 2 on the scale, tolerable though the headache continued to linger. Within 12 hours, I was back in the ER with the headache back full force, including sharp stabbing sensations at the temples and the intolerance to light and movement worse than earlier that day. Treated with an IV of Stemetil and Cogentin, no reduction in pain level (9/10) Toradol added, still no change. Doctor sent me home with 2 Percocet tablets after giving me 2 in hospital.
Cogentin is an anticholinergic. It works by decreasing the effects of acetylcholine, a chemical in the brain. This results in decreased tremors or muscle stiffness.The next morning the headache was still intense and I followed up with the 2nd dosage of Percocets and the Naproxen that was prescribed previously. Symptoms didn't ease until later that afternoon when the headache finally returned to a lingering 2 on the scale.
Percocet contains a combination of acetaminophen and oxycodone. Oxycodone is an opioid pain medication. An opioid is sometimes called a narcotic. Acetaminophen is a less potent pain reliever that increases the effects of oxycodone.
This pattern continued for the next couple of months. Different cocktails were tried with little to no relief in pain as the intensity of the pain continued to rise and fall. As the pain got higher, I got to the point where I had nausea or vomiting all the time.
I'm sure within the first 5 ER visits, a "drugseeker" flag had been placed on my charts, then I encountered Dr. Kelly. He listened, he actually heard that I wasn't there for narcotics, I just wanted relief. He ordered my first CT scan after ordering the typical Stemetil, Toradol, Benadryl IV. This lowered the pain to about 7/10, so he added more Stemetil and tried adding Decadron to the mix.
Decadron is a brand name for dexamethasone, a prescription drug that works on the immune system to help reduce itching, swelling, and inflammation.It is used to treat a variety of health conditions, including allergies, arthritis, problems with blood or bone marrow, skin problems, and flare-ups of multiple sclerosis (MS).Dexamethasone is a corticosteroid, a class of steroid hormone.This combo moved the pain scale back down to 2/10. Dr. Kelly was happy with that result, provided a prescription for Percocets and sent me home with a referral to a Neurologist. It should be noted that the CT performed was non-contrast, and did not show any significant findings.
While at home, I did have some time of little to no pain, but did notice that my co-ordination seemed "off" and I was having difficulty with recalling how to spell simple names or even write some numbers, apparently a side effect of the Percocets. This combined with the nausea and vomiting while taking Percocets was enough to determine I had a sensitivity to the drug and would prefer to not be given it again. My pain levels did continue to vary and by this time I was waiting on some follow up appointments.
In addition to the Neurology appointment, my family doctor noticed concerning levels in regards to Thyroid and Red Blood Counts, resulting in referrals to Endocrinology and Haematology.
By September, I had seen the Neurologist and had tried a course of high dose Prednisone (100mg/day x 5 days) and had started taking Amitriptyline. While on the 5 day course of Prednisone my right eye and the orbital area surrounding it began to swell excessively with a slight protrusion of my eyeball. I truly wish I had thought to take pictures, but I had a tendency to avoid the camera whenever possible. I was also sent for my first biopsy. A temporal artery biopsy was performed to check for inflammation. The results were negative, ruling out yet another possible diagnosis. One thing I've learned by this point, this is an illness of elimination. Most of the tests and treatments attempted have been in an effort to rule out one possible thing or another, hopefully resulting in the eventual diagnosis.
Prednisone is a corticosteroid. It prevents the release of substances in the body that cause inflammation. It also suppresses the immune system. Prednisone is used as an anti-inflammatory or an immunosuppressant medication.
Amitriptyline is a good initial choice for migraine prophylaxis. Although it is not licensed for migraine, amitriptyline is the only antidepressant with the consistent evidence supporting its effectiveness in migraines. Amitriptyline downregulates serotonin receptors, increases the levels of synaptic norepinephrine and enhances endogenous opioid receptor actionsThe course of treatment through the Haematology department was a series of IV Iron infusions for Iron deficiency resulting in altered red blood cells including a higher than normal platelet count.
The Endocrinologist prescribed thyroid medication for Hypothyroidism, however none of these follow-up specialists had any results in regards to the treatment or easing of the headache.
By year end, the Neurologist determined that the source of my headaches was outside of his area of speciality and he would be referring me to a colleague who specialized specifically in headaches. Dr. Giammarco of Hamilton.