Moving Forward - May 28th

I find the strength is returning on my left side. It has been a slow recovery from the shunt procedure that took place almost a month ago, but I have been doing better in some areas.

Collarbone Incision
Almost completely healed

Nausea, vomiting, and indigestion issues have all disappeared. I still get to see Rob gloating every night with the "I was right" expression on his face!

Neck Incision healed
Where the actual tie was placed

I have an appetite once again and with some help have no trouble making dinner. I do have increased pressure in my head, especially when there are changes in the weather. If it's too cold or a storm is approaching my pain levels increase and I have noticed increased swooshing noises in my head, especially if I am bending forward or laying down.  I guess when I have my follow up, that will have to be addressed.

I have considered asking the neurosurgeon if perhaps it is time to consider replacing my current shunt with a programmable one.  I seem to have about 6 months before adjustments that result in pressure changes in my head take full effect.

Approximately 8 months after my right side shunt was placed, my symptoms returned and eventually a second shunt was placed. 6 months after my left shunt was placed, I experienced over-drainage and low pressure. Already, I can feel the pressure building and I have the feeling that it will continue to climb.

A programmable shunt wasn't considered when I initially had my surgery. I had a pre-set valve placed both times and they seem to vary immensely between high and low CSF pressure levels. The magnets in the MRI cause programmable shunts to reset and require follow up to have the shunt flow rate adjusted. As I was going for frequent MRIs, I would also require readjustment after each visit.  Currently, the number of MRIs have been reduced to an annual occurrence which means the frequency of reset would be much less, and this option may be the answer to the fluctuation in my CSF levels.

2015 - Final Catching up Post

Wow! Quite the journey so far, and it's still not complete!

This is a big post, especially when you consider it contains happenings from January to May 2015. My posts after this will be more frequent, typically recording events as they occur.

The new year started out with the usual pattern for me. January was rather uneventful. I had the usual headaches but no swooshing noises.

February once again had me heading to Hamilton for follow up appointments with the Bariatric Clinic (another 10 pounds gone) and a routine MRI. While at my bariatric appointment, we discussed further the addition of a daily injection to my routine. Victoza was the medication in question, currently a diabetic drug that is in process for approval in weight loss purposes.

Victoza: Liraglutide, an injection treatment already approved for diabetes treatment, can help reduce body weight in people with obesity when used at a higher dose than is usually used in diabetes. Health Day Article

I was provided with a prescription for a 1 month supply with the instructions to inject 0.6mg daily until my next visit to the clinic. The first 48 hours following my first injection were not pleasant at all, I couldn't move without becoming sick. The nausea and vomiting gradually eased and I was able to consider food.  It's no wonder this medication helps with weight loss, if everyone becomes as sick as I did while taking it, their ability to eat becomes greatly reduced.  For the first week, the most I could tolerate was simple food, toasted English muffin, chicken noodle soup, and salted crackers.

Valentine's Day - Roses and dinner from Robert! We headed to one of our favourite places, The Golf Steakhouse in Kitchener, while Rachel spent a couple hours visiting her Grandma and Aunt. I had my usual prime rib dinner and found myself barely able to eat it. Of course, the meal includes an amazing salad bar and soup so I ended up taking the main portion of my meal home for the next day. First time I've ever walked out of that restaurant with a doggie bag!

March 5 was my next follow up with the bariatric clinic. We discussed my tolerance of Victoza and I was advised that I seemed to be doing better than many on the drug. My weight loss was continuing at an acceptable level and I was provided with a 3 month prescription with the instructions to continue the dosage of 1.2 for a month then to increase to 1.8mg.

March 9th was my follow up with Dr. Rodriguez.  My eyesight has remained stable.

I met with Dr. Khalidi on March 24.  As we discussed my current medical situation, it was decided that a sleep study would be a good course of action. My symptoms of headache, nausea, and vomiting were ongoing, I advised him of my use of Victoza and my ongoing weight loss.

I held off increasing my dose of Victoza until after my sleep study which was Friday April 10th. It wasn't too bad considering I typically have a lot of difficulty in falling asleep. I was of course advised to not consume any caffeine after 6pm.  I arrived at the hospital where the study was to be done for 8pm. By about 8:30 I was wired up and left to relax.  I had my e-reader with me, so spent the evening reading and waiting for bed time. I had a control pad that was placed on the bed beside me when I was ready to sleep. I settled in for the night about 11:30 or so as they had to get the study started. Falling asleep was my usual pattern, I had trouble, so I continued to read until I eventually drifted off. At one point during the night, I was awakened when the nurse came in to turn on the room fan, apparently I was breaking out into night sweats. I haven't received my results yet, expect they will be available at my next appointment with Dr. Khalidi.

All wired up for sleep study

Typically, I was making medication changes on Sunday, this time, we decided I would increase my dose on Saturday so hopefully the side effects would have tapered off in time for me to walk Rachel to and from school on Monday. Well, that didn't happen, increasing the dosage once more seemed to exceed my limits. The side effect of vomiting and nausea went far beyond the day or 2 I had anticipated.

I could do nothing more than lay down, even that resulted in getting sick if I happened to roll over or move too quickly. Rob ended up having to leave work, drop Rachel off with me at home and head back to work. I couldn't summon the strength to walk across the street to her school.  Other side effects continued to occur as well, especially heart burn and indigestion. I couldn't sleep, couldn't eat, couldn't do much of anything.

I did achieve one goal though! April 11th I weighed myself and discovered that I had reached my first major weight loss milestone.  100 pounds gone from my worst weight to my current weight.

Comparison of highest weight to current

April 29th, my headaches were bad, but I knew it wasn't increased pressure, I didn't have any swooshing noises in my head and rather than the outward pressure from being too full, my head felt as it if were squeezed in a vice, the only relief I got from the headache was to resort to my heat packs and stay laying down. Sitting upright for too long just made things worse and increased the nausea and vomiting exponentially. I tried stopping ibuprofen knowing it can increase stomach issues, but that made the pain even more intolerable. Antacids did nothing to control the burning and I was having difficult keeping even water down which had the potential for dehydration adding onto the current problems.

Given my experiences in 2008 when everything started up, I had come to distrust finding satisfactory results from a trip to the emergency department. Robert was getting concerned because I was in worse shape than normal, so he made a call to Dr. Klurfan. When he received no answer and discovered her voice mail was full, we decided waiting was out of the question. It was time to visit the ER. The first decision we faced was if we should go to the local hospital, or make the drive to Hamilton.

Hamilton ended up being the choice we made.  My records from the past 3 years would be readily available through Hamilton Health Sciences and provide a history for the doctors, a resource the local hospital wouldn't have, virtually putting me back at square one. I wasn't too long waiting to get into the emergency room, they were busy and low on bed space but they were able to find an overflow spot for me.  It wasn't long before I saw the ER doctor and she got me started on an IV for pain with Ondansetron added for the nausea. A neurology consult was brought in and after reviewing my history the decision was made to admit me in order to determine if my shunts were failing or if there was something else going on.

I spent the night in the ER then was moved to the Clinical Neurosurgical Unit. On the 30th, doctors decided that we could be looking at a shunt revision being required and I was made NPO in anticipation of surgery. I had elevated white blood counts, reflective of possible infection and a specialist from Infectious Diseases was brought in for consultation.

NPO: Nil per os (alternatively nihil/non/nulla per os) (npo or NPO) is a medical instruction meaning to withhold oral food and fluids from a patient for various reasons. It is a Latin phrase whose usual English expansion is nothing by mouth (most literally, "nothing through the mouth"). Variants include nil by mouth (NBM).

An infectious disease (ID) specialist is a doctor of internal medicine (or, in some cases, pediatrics) who is qualified as an expert in the diagnosis and treatment of infectious diseases. After seven or more years of medical school and postgraduate training, ID specialists complete two to three years of additional training in infectious diseases.

ID specialists have expertise in infections of the sinuses, heart, brain, lungs, urinary tract, bowel, bones and pelvic organs. Their extensive training focuses on all kinds of infections, including those caused by bacteria, viruses, fungi and parasites.

Dilaudid (hydromorphone) is an opioid pain medication. An opioid is sometimes called a narcotic. Dilaudid is used to treat moderate to severe pain.

Abdominal ultrasound and shunt x-ray series were ordered to verify no physical or technical issues were resulting from the drainage catheter in my stomach. I continued to receive Dilaudid and was placed on an alternating schedule of Ondansetron and Gravol to control the nausea and vomiting.

For the first 3 days I was NPO for most of the day as there was still a possibility of a shunt revision being done. Ironically, the NPO orders were reversed after dinner had been served on the ward. By this time I was finding the thought of food a little more appealing thanks to the anti-nausea medication.

May 2nd I saw one of the neurology residents and was advised that an LP would be done later that day. I didn't actually get the LP done until the next morning. The doctor came in around 3 am to say she was having a busy night and would be in to see me in the morning to do the spinal tap.

The tap on May 3rd didn't go well for me. It was performed at the bedside by the resident.  She had difficulty getting the catheter into the proper space and it took 3 attempts including having another resident come in to assist.

Shortly after 10am I sent a message to Rob, letting him know that my LP came back with a very low pressure reading (13, which agreed with the symptoms that prompted me to visit the ER in the first place) and the doctors had decided to tie off the left side shunt and send me home.

That afternoon I was moved into the procedure room to have my shunt tied. I did have some concern about the success of the procedure based on my experience with having the right side tied off only to be reversed a week later. Previously, the tie off procedure was quick and relatively painless, I expected the same this time. I quickly found out I was wrong!

After freezing, an incision was made at my collar bone on the left side and the resident proceeded to search for the tubing in order to place a couple sutures around it. This took longer than he anticipated and I could feel the freezing wearing off and could feel tearing sensations as he probed for the tube. Freezing was re-applied 4 times before the resident decided that he would close off the incision and start again. I recall him going through 4 changes of gowns and gloves, something I don't believe to be typical during a procedure, but I guess he felt it was necessary, or perhaps just needed to cool down before proceeding.  Additional pain and the resulting nausea required more medication added to my IV. By this point, I had reached my limitations, I was not tolerating the procedure well and found myself shaking and in tears, an unusual reaction for me given what I had learned to put up with over the past 7 years.

May 3rd
Incision at collarbone for shunt procedure

A second site was prepared and a small incision made on my neck below my ear. The tubing was located relatively quickly this time, but I experienced a lot of pain that seemed to be nerve related. When the tubing was shifted to allow for the tie to be placed I felt burning sensations along the top of my ear and felt as though my hair was being pulled out by the roots. After a few minutes of this, the ties were placed and the resident closed the incision with steri-strips.

 We celebrated Rob's birthday with my return home. My sister, Mandee stayed with us for a few days to help out with Rachel and look after meals while I was recovering.

I received a call booking a CT scan and follow up with the Ambulatory Neuroscience clinic for June 18th.

Mother's Day - Rachel presented me with a project she had made at school. It really hits home just how my daughter perceives my illness, and that Rachel has never known me to be 100% well.  I have been lucky, she really does her best to help out around the house and helps care for me when I'm having a bad day.

Front

Rear of Rachel's Mother's Day gift
Thanks Krystal for the added coffee inspired decoration ;-)

My headache eased a bit shortly after having the shunt tied but I soon found myself experiencing occasional swooshing noises. I continued to experience nausea and vomiting and the resulting weaknesses right up until May 15th. The previous day I made the decision to stop taking Victoza to see if it was adding to my symptoms.

On the 15th I had my sutures removed from my incision. On the 16th we had a gathering of family in a combination celebration of Rob's Birthday, Mother's Day, and my upcoming birthday.  It was also a day for my mother and Krystal to relax and enjoy the quite time following a busy tax season. I have to confess that perhaps once again Rob was right, and the Victoza was contributing to the nausea. Within 2 days of stopping the injection, my nausea had eased drastically and I was able to enjoy a prime rib dinner.

May 15
Sutures out

2014 - more of the same

I continued into 2014 with regular follow ups with Dr. Rodriguez for my eyes, Dr. Khalidi for the pachymeningits and auto-immune treatment and Dr. Klurfan for the IIH. I was having regular blood work done and MRIs every 4-6 months.

In May, I stopped taking the Plavix that Dr. Klurfan had placed me on along with daily ASA for prevention of blood clots following the stent. The balance of my medications remained the same, though I was finding the gravol was not sufficient for anti-nausea purposes and began using Ondansetron (Zofran) twice daily. Dr. Klurfan decided that there were indications in my MRI that I was experiencing over-drainage from my shunt.  A procedure to tie the shunt off and prevent it from draining was scheduled for June.

Plavix: Clopidogrel is used to prevent heart attacks and strokes in persons with heart disease (recent heart attack), recent stroke, or blood circulation disease (peripheral vascular disease).It is also used with aspirin to treat new/worsening chest pain (new heart attack, unstable angina) and to keep blood vessels open and prevent blood clots after certain procedures (such as cardiac stent).It works by blocking certain blood cells called platelets and prevents them from forming harmful blood clots. This "anti-platelet" effect helps keep blood flowing smoothly in your body. 

Daily ASA: Aspirin, the common pain reliever that has been in our medicine cabinets for more than a century, also has a talent for prevention.Aspirin prevents blood clots from forming in your arteries. This can prevent a heart attack or stroke. 

Ondansetron: blocks the actions of chemicals in the body that can trigger nausea and vomiting. Ondansetron is used to prevent nausea and vomiting that may be caused by surgery or by medicine to treat cancer (chemotherapy or radiation). Ondansetron is not for preventing nausea or vomiting that is caused by factors other than cancer treatment or surgery.

Healed incision from shunt procedure
virtually invisible

The procedure to tie off my shunt was done June 10th.  A relatively simple process done in the procedure room of the Clinical Neurosurgical unit of the Hamilton Health Science. Done under a local anaesthetic, a small incision was made in my neck and sutures were placed around the shunt tubing then the incision was closed with a couple more stitches.

My headaches continually worsened. I spent the days in bed unable to lift my head from the pillow. The pain was even worse than before the shunt was tied off, the swooshing increased and I became even more sensitive to light and noise. I was on the phone daily with Dr. Klurfan's office. She reversed the procedure a week after it was done and while relief was not complete, I returned to previous levels almost immediately.

In July, Dr. Klurfan made some referrals for me, specifically Pain Management Clinic and Bariatric Medical Program. Appointments for both were booked in October.

I continued with follow ups, medication and more MRI's from July to September. During my visit to her office in September, Dr. Klurfan booked me for a lumbar puncture to clarify what was happening. My MRIs showed small ventricles on the right side, almost to the point of collapse, but on the left I was showing larger ventricles. I was booked for the procedure room once again and Dr. Klurfan did the LP herself on October 1st. A plan was in place contingent on the LP results.

My opening pressure was 31 that day, a complete opposite of what the doctor was anticipating. She drained off a bit and took a second reading.  Closing pressure was 20, considered to be a high normal. I felt immediately better, the swooshing eased off and the intensity of the headache dropped significantly. I was sent home with plans to return on the 3rd for yet another MRI, a follow up and pre-op clinic on the 8th, a CT scan on the 9th and shunt surgery on the 10th.

Based on my previous shunt experience, I made the decision to start out with a hair cut to make the clean up and after care simpler.

underside of pre-surgery cut

Pre-surgery cut

I was also sent for a CT scan the day before my surgery was booked to have "doughnuts" placed, technically, markers for guidance during the surgery.

Guides in place 
 must stay on until after surgery

Surgery was scheduled for noon on the 10th, and again went well. I woke up with 2 new incisions on the left side this time, one in my head and one on my stomach and my hair was shaved even more.

Post-op Incision - Left Skull - 2014

I found the post surgical pain this time wasn't as intense as it had been in 2012, perhaps due to slightly different techniques of the surgeon.  The tubing for this shunt was not as obvious as the one on my right side as the path seems to be at the back of my neck rather than towards the front.  I did find that post-op nausea and vomiting was much worse than previous, continuing daily for about 2 weeks. I once again relied on Ondansetron to counter-act it. I gradually improved and managed to carefully bake a cake and take part in Rachel's 5th birthday!

Healed Abdominal Incision
Left - 2014

Healed Abdominal Incision
Right - 2012

My appointment with the Pain Management Clinic was cancelled as they had overbooked and I was advised they would contact me with a new appointment at a later date.

October 27th, I had my first appointment with the bariatric program. It was not quite what I was expecting. I was not aware that the first appointment was actually a group information session to learn about the program and how it worked.

The technician explained that for 12 weeks there would be weekly group sessions to learn about and discuss our weight loss. They also explained that the medical program was strictly diet.  The available surgeries for weight loss were discussed, the options being gastric by-pass or gastric sleeve. Gastric banding was also mentioned, but not as an offered procedure as it is a reversible option that is not covered under provincial insurance. If we were still interested in going forward with the Bariatric Medical Program, a further appointment could be booked. If we were looking for weight loss surgery a new referral to the Bariatric Surgical Program was needed.

I booked my appointment for November 19th with the intention of discussing the medical program further with the doctor.  I had a primary concern that I could not travel weekly to Hamilton to attend a 2 hour long session. I don't drive, and when my sight was first affected, I was advised by Dr. Rodriguez, if I had my license he would be required to pull it for medical reasons.  This meant that any appointments I have, Rob needs to take the time off work in order to take me there, spend the time waiting, then stay for the actual appointment and that doesn't include the time to travel from Brantford to Hamilton and back.

When I saw the doctor, he agreed that I could pursue a one-on-one schedule.  I think the fact that I had managed to lose 40 pounds between my referral and my first meeting with him helped to show that I could lose the weight successfully and really only needed monitoring.  We agreed that I would continue as I had been and return for a follow up visit after the new year.

December 2nd, I was scheduled for a follow up CT and appointment with Dr. Klurfan.  She was happy with the results of the surgery. Ventricles appeared to have evened out in size and I also appeared to be draining normally and once again the swooshing noises had disappeared, though I still had headaches, they were much more manageable. At this point Dr. Klurfan advised that I no longer needed to see her as we had explored and used all options currently available to us.  I was left with the reminder to call her if my neurological symptoms increased or changed in any way.

2013 - Remission?

Family - July 2013

2013 started out to be a great year!

Before getting into the year, a reminder, there is no cure for IIH.  The best we can hope for at this time is to enter a state where symptoms are non-prevalent. Similar to someone successfully treated for cancer, IIH is said to enter into a remission state.

My symptoms from the IIH were minimal to non existent. Occasional headaches would set off a warning sign for me though, always creating the concern "is it back?" only to have the headache completely disappear with a dose of acetaminophen or ibuprofen.  I wasn't medicating for pain on a daily basis.

Medication wise, I was still taking a number of things.  Eltroxin for the hypothyroidism, prednisone had been tapered down to 10mg/day, a much more tolerable dose. Tecta had been added to help counteract the indigestion issues I had with the prednisone. Cyclophosphamide was switched out for Azathioprine (Imuran) and I was on a daily dose of antibiotic for prophylactic purposes.  I recall telling my nephew at one point that I took 30 pills a day, 22 in the morning and 8 at bedtime.  That's a lot of pills to swallow. 

Eltroxin: Levothyroxine is used to treat an underactive thyroid (hypothyroidism). It replaces or provides more thyroid hormone, which is normally produced by the thyroid gland.  

Tecta: Pantoprazole magnesium belongs to the family of medications called proton pump inhibitors (PPIs). Proton pump inhibitors are used to treat conditions where a reduction in stomach acid is needed 

Azathioprine is used with other medications to prevent transplant rejection (attack of the transplanted organ by the immune system) in people who received kidney transplants. It is also used to treat severe rheumatoid arthritis (a condition in which the body attacks its own joints, causing pain, swelling, and loss of function) when other medications and treatments have not helped. Azathioprine is in a class of medications called immunosuppressants. It works by decreasing the activity of the body's immune system so it will not attack the transplanted organ or the joints. 

Prophylactic: A preventive measure. The word comes from the Greek for "an advance guard," an apt term for a measure taken to fend off a disease or another unwanted consequence. 

Cyclophosphamide: Cyclophosphamide is in a class of medications called alkylating agents. When cyclophosphamide is used to treat cancer, it works by slowing or stopping the growth of cancer cells in your body. When cyclophosphamide is used to treat nephrotic syndrome, it works by suppressing your body's immune system.

New Glasses - May 2013

I was still seeing Dr. Rodriguez and Dr. Khalidi every 3 to 4 months as they continued to track my progress through MRIs and Visual Field Tests. Everything was looking good, the pachymeningitis appeared to have stabilized, my vision was no longer deteriorating though it was determined the loss of peripheral vision was permanent.

Headaches were at this point "just a headache" they came and went like a normal, occasional headache.  Thanks to the reduction in prednisone, I was able to lose some of the weight I had gained and my face lost most of the moon like appearance.

Immunosuppression Therapy, in my case, treatment with cyclophosphamide and later the use of Imuran, of course has its own risks. Primarily, the risk of infection from a simple cut is much higher. I was on a daily antibiotic for preventative measure. Shaving is discouraged, ensuring all cuts and scrapes are cleaned and cared for becomes a priority. Simple tasks such as grocery shopping become a source of potential infection. Hand washing and the use of portable hand sanitizers are constant habits, leading to hands that easily become dry and cracked, so moisturiser is stocked up on.

Research into IIH to date has not confirmed a cause, and there is no cure.  There are many theories and hypothesis, with the unifying factor being the poor absorption of CSF.  Weight, certain medications, physical structures of the skull, or narrowing of the arteries within the skull are a few possible causes.  In some patients, another medical condition has actually caused the increased pressure and is referred to as Secondary Intracranial Hypertension.

A very technical read, but a lot of good information on IIH can be found at Idiopathic Intracranial Hypertension.

Ready for birthday dinner - May 2013

Everything was looking up. As far as I was concerned, I was in remission and had been for 8 months, or at least 5 if you allow for the first 3 months to pass before considering remission. I was ready to return to work. I examined my options and realized that the reduction in eyesight created issues with pursuing computer programming and even IT support, the 2 programs I had completed when my medical issues began.  Working at a computer all the time was difficult, and required just the right lighting and position, (something not easily accommodated for in most workplaces) or I ended up with neck pain and stress related headaches.

In August there was a job fair for a new Toys R Us going in close to home. Given my limitations, I thought retail, perhaps a position as a cashier was feasible. The day before the job fair I had woken up with a headache that was more difficult to reduce than I had become accustomed to.  The  next day, I woke up again with a headache and decided to wait for the second day of the job fair.  For the third day in a row I woke with a headache and noticed the swooshing and pressure had returned.

I contacted my neurosurgeon, Dr. Wells, only to discover that he had semi-retired and was no longer seeing neurology patients in his office. I then contacted my neuro-opthamologist, Dr. Rodriguez and was booked to see him the next day. Examination revealed a slight swelling of the optic nerve but no further damage.  He advised that he would meet with some colleagues and set up an appointment with a new neurosurgeon.

venous phase of cerebral angiography
shows bilateral transverse sinus stenoses (arrows).

I saw Dr. Klurfan, the new neuro-surgeon for the first time in September. Thankfully all of my specialists are located in Hamilton, therefore, they all have access to medical records and tests through Hamilton Health Sciences. Dr. Klurfan reviewed my past history and on examination of my MRI results, which included venous scans.  She saw evidence of transverse sinus stenosis.

Stenosis: an abnormal narrowing or contraction of a body passage or opening; called also arctation, coarctation, and stricture.

I continued to see Dr. Klurfan for monitoring and additional MRI studies. In November, Dr. Klurfan, suggested that a stent procedure to open the narrowed arteries within my head was the best course of treatment. Placement of the stent was performed in the Diagnostics Imaging department.

Stent Procedure: A catheter is inserted (usually in the groin) and then threaded through the arteries and in either the arteries of the neck or brain depending on the location of the problem. The stent delivery system follows the same path as the catheter, and thus, carries the stent to the treatment site. The stent is then placed. As it is positioned, it expands to conform to the inside contours of the artery wall. After placement, the catheter is removed and the stent stays in place.  

I had dual catheters used to allow gradient pressure measurements to be obtained on both sides of the occlusion.  Pressure readings were repeated after the stent was expanded and indicated a 90% improvement in flow.  The procedure was performed using twilight sedation and the lines that were used to access my arteries were left in place for 12 hours.  I was unable to move or sit up while the lines were in place to prevent arterial bleeding. Once the lines were removed, I was monitored for a few more hours then sent home later that day.

Twilight Sedation: Conscious sedation is a combination of medicines to help you relax (a sedative) and to block pain (an anesthetic) during a medical or dental procedure. You will probably stay awake but may not be able to speak. Conscious sedation lets you recover quickly and return to your everyday activities soon after your procedure.

View of transverse sinus stensois before and after stent placement
Transverse Sinus Stenting

I recovered relatively quickly after the stent procedure. I had some difficulty walking any distance for about a week, but over all pain was minimal, with the exception of my head. Having the stent placed did not appear to have any noticeable effect on my headaches or the swooshing sounds in my head. On to the new year!

2011 - Not much change

My headaches continued to persist on a daily basis with no resolution in sight. I had repeated follow ups with Dr Harvey, and it was his opinion that I would have to learn to live with the headaches as he could see no reason for them. His primary concern was continuing to monitor my double vision and ensure that there was no re-occurrence of the pseudotumour.

Inactivity due to the headaches did contribute to a slow increase in weight, but I was finding it more difficult to keep active beyond caring for a toddler. 

Not so flattering - August 2011 approximately

In June, Rachel became an escape artist, climbing out of her crib, so we moved her to a toddler bed for safety reasons. 

Rachel testing out the new toddler bed

In October, I did begin to notice occasional white-outs of my vision when changing position, especially if I bent forward to pick something up. I didn't think too much of it at the time at least I didn't think it was worth an extra trip to Hamilton when I had an appointment coming up in the new year. I did manage to lose about 30 lbs of the weight I had gained but with the hypothyroid condition, weight loss is not easy. 

Rachel's 2nd Birthday

Rob got a new job in Brantford and after commuting for a bit, we decided that it would be better to relocate our family before winter made the commute more dangerous. We moved December 1, 2011.

2009 - Lots of good and bad

January - I got a little good news, my thyroid levels had returned to normal range with the help of medication.  The bad news, I would be on thyroid medication for the rest of my life. Diagnosis was Hypothyroidism.

Hypothyroidism is a condition in which the body lacks sufficient thyroid hormone. Since the main purpose of thyroid hormone is to "run the body's metabolism," it is understandable that people with this condition will have symptoms associated with a slow metabolism. 

Symptoms of Hypothyroidism

• Fatigue
• Weakness
• Weight gain or increased difficulty losing weight
• Coarse, dry hair
• Dry, rough pale skin 
• Hair loss
• Cold intolerance (you can't tolerate cold temperatures like those around you)
• Muscle cramps and frequent muscle aches
• Constipation
• Depression
• Irritability
• Memory loss
• Abnormal menstrual cycles
• Decreased libido

February and March continued pretty much as 2008. 

Constant 24/7 headaches with little to no relief. Towards the end of March I noted a marked increase in nausea and vomiting which I associated with the pain levels and a few new symptoms which seemed to be all part of the Hypothyroid issues. 

Rob's sister Amanda and her husband Steph welcomed the birth of my adorable nephew Ethan on March 7th. On March 30th, I did some mental math, added up some of the newer symptoms and while joking around with my sister Mandee about pregnancy decided a stop at the pharmacy was in order. Took the test the next morning, ironically, April 1st. Double line/positive results before the time to even check had passed. Followed up with family physician who confirmed that Rob and I were expecting! I was 38, soon to be 39 and honestly didn't think it was even possible.

Fertility and Hypothyroidism: If you know you have an under-active thyroid gland, talk to your doctor about having a baby. Your doctor will want to check your thyroid levels and make sure they are right before you start trying to conceive. If your levels are too low, you have hypothyroidism and may not be ovulating as you should. Taking the right dose of thyroxine, the hormone you lack, can restore your fertility.  

We told our families of the news in April and also contacted my Neurologist who immediately stopped all medication. The only medication I was allowed at this point was my thyroid medication, acetaminophen, Gravol and the occasional ibuprofen. This had the obvious effects of not being able to control the pain levels, resulting in increased nausea. I found myself spending more and more time in bed, between pain and weakness I wasn't able to do much. 

In May, I had my first visit with Dr. Giammarco in Hamilton ON. Her tentative diagnosis was New Daily Persistent Headache. A relatively new condition first described in 1986. However, further testing and diagnosis had to be put on hold until after the baby was born. Advised minimal use of over the counter analgesics and to get through the following months as best as I could, and to set up an appointment shortly after the baby was born. An MRI was scheduled for November as my due date was October 21st. The doctor did mention that with luck, pregnancy hormones could counteract and effectively cure the headaches and no further treatment would be required. 

New daily persistent headache (NDPH) is a chronic headache developing in a person who does not have a past history of headaches. The headache begins acutely and reaches its peak within 3 days. 

When I had Krystal, gender reveal wasn't a big thing, and considering this was Rob's first child, the anticipation of waiting for the delivery to find out if we had a son or daughter added to the excitement. Of course, our families (well his side more than mine), wanted to know, but we held firm, going with the tradition of selecting both a name for a boy and one for a girl. We decorated the baby's room with yellows and greens. 

Baby's Room all set up

Quilt belonging to Daddy when he was a baby

Things continued pretty normally (for me at least) until September. Rob had returned to school for his final year of Software Engineering Technology and I spent my days as best as I could. Resting, keeping to a darkened room, eating when I could. Mid September, I started experiencing contractions. Went into the hospital and ended up spending a couple days there hoping to hold off delivery for another month. I was given an injection to help mature the baby's lungs just in case, and sent home.

October 23, around 3 am, I called Rob home from an all night project session in order to head to the hospital. As my due date had passed, was told I wouldn't be leaving until the baby had arrived. Fortunately, Rob had some understanding professors who gave him (and his thankful team members) deadline extensions.

Getting some rest before the big event

I was in labour 16 hours, and was given an epidural which actually wore off partway through and had to be repeated. I didn't spend much time actually pushing, seems like once we got to that point things went pretty quick for me, and though my headache was along for the ride, at this point it was the least of my concerns.  

Still waiting

When the baby was born, we were happy to find out that we had another daughter! Rachel Josephine, born at 7:20 pm, weighing 7 lbs 11 oz, 20 inches long. I still remember Rob making the phone call to let his mother know she had a granddaughter, there was no way she was believing him, I had to confirm that she had her first female grandchild. (more below images)

Rachel Josephine Bray, Posing for her first photo shoot at 10 minutes old 

Meeting Mummy face to face finally!

Aunt Mandee and Big sister Krystal

Meeting Daddy!

Now that the baby had arrived, I was back on course for trying to determine the cause of my headaches (which didn't resolve with pregnancy) and hopefully get some relief. My MRI had been booked for November when I saw Dr. Giammarco back in May.  Contrast dye was used to ensure the best results.  After the results had been examined, I received a call advising me that I was being given yet another referral.  I was scheduled to go to the Eye Clinic at St Joe's Hospital in Hamilton in January.

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. 

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"