Just a short note about this blog.

For timeline purposes, posts from 2008-2014 are summaries of significant happenings in those years. Please use the Blog Archive links to start at the beginning.

Past tense/Present tense language may change within a post, but those variances should not impact the overall telling of my experiences. I am Canadian, therefore, the spelling of some words (tumor/tumour, color/colour) may vary depending on if it's my wording or quoted text. I have tried to include both key words in the labels of relevant posts.

The blog contains medical terminology. I have tried to provide explanations or definitions when they occur. Occasionally medical images (nothing too graphic) are included to further explain or demonstrate.

Explanations and graphics link to original sources wherever possible with the exception of my personal photos.

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November 19, 2008

In Memory ~ Buddy (1994 - 2008)

Buddy and Rob
I can't leave 2008 behind without posting about a truly special family member we lost late in the year. 

Buddy was Rob's Shepard/lab cross. A sweetheart of a dog that I didn't have the fortune to know long enough.

Rob often shared stories of how Bud had the habit of escaping and often he would find him in the company of women. Perhaps it was his way of trying to help Rob find the right one. 

Buddy was there a lot for me when I got sick, often just coming up and resting his head on my knee, or on the bed beside me while sticking a cold nose in my face, as if to say "just making sure you're ok". 

Buddy with Krystal

He will forever be remembered as "the party pooper" though. 

In July 2008, we had a family gathering for Canada Day and to celebrate my sister Tara's 20th birthday. As you can guess, the combination of excitement, plus nerves (Bud had an extreme fear of thunder and fireworks) resulted in an unpleasant accident. Fortunately, we had replaced our carpets with a tile floor and with the help of green apple scented cleaning wipes, quickly got back into family mode. 

In the latter part of 2008,  Buddy had noticeably aged. His hearing was pretty much gone and he was beginning to really show his 14 years. He was getting unsteady on his legs and I was truly concerned of him getting seriously hurt slipping and falling on the ice and snow. 

November 19 we made the choice to say good-bye to a long time friend.  I guess in Buddy's mind, he knew Rob had finally met the right person and he could rest. 

He may be gone, but he will never be forgotten
April 24, 1994 - November 19, 2008

May 22, 2008


2008 - So many doctors, medicines, "lets try this" or "maybe it's that" all with no relief in sight!

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

A trip to ER once again. I was given a pain cocktail consisting of Stemetil, Toradol and Benadryl
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.

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. 
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. 

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 actions
The 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. 

May 01, 2008

First Post

Arnold Schwarzenegger Kindergarten Cop

My spouse, Robert has been encouraging me to attempt this for a while now, and when I realize how many times I've shared my story, whether it's strangers on IIH message boards, medical students, interns, residents and nurses, family and friends, I find myself hoping that by sharing this information I might be able to help another sufferer find a way to deal with the pain they experience, or to better understand what their spouse/patient/friend is experiencing on a daily basis.

A little about me.

I was born in 1970 and grew up in Sault Ste Marie, ON. 

In 1986, my mother and I relocated to Kitchener Ontario. 

In 1987, I was involved in a car accident resulting in some reasonably minor injuries.. broken ribs, banged up a knee that had previously been operated on for cartilage damage, broke a tooth and an ankle, over all I was pretty lucky.  Shortly after my accident, my mother remarried, in fact, my cast was placed on my ankle the day of her wedding as the break wasn't immediately spotted during the post accident examinations.

In July 1988, my sister Tara was born, In December, I welcomed the arrival of my daughter, Krystal. and in June of 1989, I welcomed not 1 but 3 new siblings.  My step-brother, Carl and step-sister, Randi arrived in Kitchener on the same day my youngest sister Mandee (Amanda) was born. 
In 1998 I got married and moved from Kitchener to Renfrew (little town in Eastern Ontario, approximate population of 5200).

In March 2001, I separated from my spouse due to alcoholism (his) and a few other reasons. I moved temporarily into a Y residence in Ottawa to complete a contract position I had with the Ministry of Labour.  I escaped into on-line gaming during my off hours thanks to a popular MMORPG (Massively Multi-player, On-line Role Playing Game), Everquest. After the completion of my contract I relocated back to Kitchener to join my daughter who had returned in March to stay with her grandparents.

2004 I made the decision to return to school. Applied and was accepted into Computer Programming at Conestoga College in Kitchener.  Part of the inspiration for this was a period of time spent working at a call centre providing some technical support for US users of MSN internet services.  An interesting job, but I wanted to know more than what was provided in the technical support scripts while avoiding the unintentional but abusive nature of frustrated customers. 

Robert and I had gotten to know one another playing Everquest around 2003/2004 and started dating in 2005. In May 2006, I graduated from my program and immediately expanded my knowledge in the computer field by enrolling in the Information Technology Support Services Program also at Conestoga College.

Inspired by my return to school and following an accident at work (fortunately nothing more than a small piece lost from the side of his index finger), Robert decided to also return to school and was accepted into Software Engineering Technology at Conestoga College, leaving behind his career in the Sign industry. Late 2007, he moved to Kitchener and began school.

2008 saw the completion of school for me and the start of my medical issues as detailed in my 2008 post. Initially, I put off the daily headache as stress related, finals were coming up, followed by graduation, then finding and beginning a job in my newly chosen career, but as I will share in following posts, I learned just how wrong I was.

First off, what is it?  
Intracranial hypertension is a neurological disorder in which the increased cerebrospinal fluid (CSF) pressure has generally arisen and remains elevated over a sustained period of time. It can either occur without a detectable cause (idiopathic intracranial hypertension) or be triggered by an identifiable cause such as an underlying disease or disorder, injury, drug or cerebral blood clot (secondary intracranial hypertension). It is frequently a life-long illness with significant physical, financial and emotional impact.
Other names for this condition include Benign Intracranial Hypertension and Pseudotumor Cerebri, however there are efforts to change these references to the condition as there is nothing truly "benign" about it, with the exception of being non-cancerous.  Pseudotumor literally translates to "Fake tumour" - the body reacts as if there is a tumour present, but as Arnold said in the above clip "it's not a tumour"