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 21, 2016

Holidays are coming!

The seasonal Controversy- best response

The title says it all! This one isn't IIH related once again, but it is addressing an issue that does cause a bit of a headache for many!  

One of my biggest pet peeves start up this time of year! Constantly on social media are the influx of posts of people complaining that you can't say "Merry Christmas", you have to say Happy Holidays, you can't have a Christmas Tree, you have to call it a "Holiday Tree" etc etc. 

Honestly, I haven't seen much of this outside of Facebook. I can't find any official publications that support this belief, at least nothing current, some articles published in 2013 regarding the controversy. Somewhere a couple of years ago, someone had an issue and it has perpetuated and festered over time to the point where everyone seems to have the opinion that people are not allowed to express the holiday wishes they are comfortable or familiar with. 

Now, I do understand that in the public school system, there has been some concern raised over the holiday season given that not all students in the school system celebrate Christmas, however, and this is my personal opinion here, I don't think banning the mention of Christmas in the public system is the answer, a better approach might be to make it a teachable, multi-cultural moment and allow students to share in one another's holiday experiences. This would require some open-mindedness on the parents and teachers behalf, but, in the long run, it could help to move past the issues that are arising each year and help people to accept a broader holiday season.

My suggestion would be, turn an area of the school into an international holiday display.

Let students put up a Christmas Tree, allow other respectful displays such as Kwanzaa Candles, the Menorah, and include some less familiar symbols from cultures and traditions that students may not immediately recognize. While I don't normally link to Wikipedia, I'm making an exception today. This is a listing of December holidays, including some fictional/virtual ones (interestingly enough Frostfell the Everquest holiday season isn't included!)

Player seasonal reward - Everquest

Like the opening image suggests, the simplest response, no matter what holiday greeting you receive, is "thanks, you too!", alternatively, if you're comfortable with Merry Christmas (or Happy Hanukkah, Happy Kwanzaa, Happy Holidays... you get the picture), then make that your go to response regardless of what is said to you. 

And, in case I don't get back here before hand...

November 01, 2016

Halloween and Remembrance Day

So this post isn't IIH related, I occasionally take time to just enjoy the holidays and current seasons and try to ignore everything that's going on in my head! Today is one of those days!

Happy Halloween!!!
Ok, it's a day late, but I wanted keep the post together :)
Our Pumpkins this year 

 Rachel wanted a horse pumpkin given her horse craze, I completely understand!  Daddy did a great job considering his first time in years making a more intricate carving!  Rachel had a great Halloween.  She couldn't get her first choice of costume, Owlette from PJ Mask, but personally, I think her alternative was a much better choice! She choose the robe for the hoop in the dress, she just loves dresses that "twirl and spin" when she dances around, but it did add an eerie effect when she walked around!  I edited my first picture here to dim out the hallway where the picture was taken... I think the effect is quite spooky over all! 

Slightly edited (background dimmed) picture of Rachel's Halloween costume.   

This shot of her costume is unedited, taken in the elevator of our building .... 

Costume in natural lighting. The mask was a last minute touch that just set off the look perfectly! 

I put together a quick CSI outfit for myself, not your typical Crime Scene Investigator though!
I was a Candy Sweetness Inspector!  Someone has to check out that candy! 

Now that Halloween is over, Christmas and December is not far off.. but before those celebrations kick in I think it's important to give Remembrance Day it's proper respect!  Stores have Christmas decorations on the shelves even before Halloween stuff has been removed, and not a moment is taken to pay tribute to those who have served.

For those who are not familar with Remembrance Day 

Canadians recognize Remembrance Day, originally called Armistice Day, every 11 November at 11 a.m. It marks the end of hostilities during the First World War and an opportunity to recall all those who have served in the nation’s defence.

I have done a little research into my grandmother's arrival in Canada as a warbride, but the information is not easy to find.  I believe the ship that she arrived on was the Letitia, docking in Halifax at Pier 21 in 1946. My grandparents settled in Sault Ste Marie Ontario, where they lived out their lives. My grandfather passed away in 1980 and my grandmother in 1982.

My Grandparents
Gerald and Linda Dewar
Married in England 1945

Remember Me - Poem from Canadian Legion Magazine 1980
I am not the author, and I do not have the author's name. Any information regarding the author of this piece, please let me know so I can give appropriate credits! 

October 15, 2016

October 2016 Update

I've been neglecting updating lately, things haven't changed much, so there hasn't been too much to say lately. I'm still in a holding pattern. My headaches are still occuring daily with not much change, my vision is stable and no new issues have come up. I had my annual MRI done yesterday and will be seeing my doctors soon for my regular round of visits.  I have added a nuerologist to list of doctors, and she has started me on a new medication in the hopes of reducing the headaches.

Torpiramate: Topiramate is classed as an antiepileptic medicine. It is usually used to prevent seizures in people with epilepsy and there is another leaflet called Topiramate for epilepsy which gives more information about this. However, topiramate has also been found to prevent migraine attacks from occurring. When used for migraine, it may not completely stop every migraine attack, but the number and severity of attacks are often reduced.  Patient Info on Torpiramate 

I am really dealing with the side effects of this medication! Tingles, pins and needles, my hands and feet constantly feel like they have fallen asleep, though it has improved compared to when I first started on the medication.  Initially, my extremities had a constant vibrating sensation. I can't think of any other way to describe it, now I only get the sensation when I move certain ways or if I'm extremely tired or cold which is certainly an improvement.

I just got a reminder on my Facebook feed.. 2 years ago today, I was recovering from my most recent surgery.  I had just had my second shunt placed, so I have come a long way in that regards. 

October 2014 - Shunt placement incision

I haven't been making as many cakes lately, I just haven't had the energy of course, I have been dealing with the seasonal back to school cold and sinus stuff which seems worse than normal this year, and I find they just don't get eaten when I do make them, though I will be doing some baking this coming week, Rachel turns 7 next week, and our niece will be a year old! Will post them up when done :) 

Speaking of Rachel, her riding lessons have continued and she is making huge improvements! She is off the lunge line and riding around the arena at a trot with ease, sometimes with a little more courage than we are entirely comfortable seeing!

Rachel trotting during her lesson 

I have started going back in for regular massage appointments! Just a little shout out here to Massage Addict in Brantford! I go in once a month for a massage to help ease the tension in my neck and back created from the vision and neck and does it help!! I've been sharing my story with my therapist and word of my blog is getting out there.

Just a reminder for anyone who is checking this blog out for the first time to be sure to go back to the beginning and read from the first post.

Hobby wise, I've gotten back into playing the Sims to kill time. Currently, I've been checking out The Sims 4.  It gets mixed reviews, but I don't have too many complaints so far.  If anyone is interested, I've been blogging my game (one reason I haven't had as much activity here I guess) My Sims 4 Blog and have been creating some walkthroughs and keeping my web skills up a little.  

May 28, 2016

Neurology Webinar Video discussing PTC/IIH

The Johns Hopkins Hospital - Neurology

I found this video from Dr. Moghekar discussing the latest in research, diagnosis and treatment for Pseudotumor Cerebri (IIH) 

Dr. Abhay Moghekar focuses on disorders of cerebrospinal fluid physiology like normal pressure hydrocephalus, obstructive hydrocephalus, congenital hydrocephalus, pseudotumor cerebri, CSF otorhhea, CSF rhinorrhea, intracranial hypotension due to spinal CSF leaks and peri-operative management of patients undergoing repair of CSF otorrhea and rhinorrhea.

Pseudotumor Webinar Video

A very interesting video discussing this condition from a medical view point. The video is approximately 1 hour in length.

May 23, 2016

IIH Compassion Challenge

I haven't posted much lately because things have been pretty stable in my case, not better, just not progressively worse. I spent some time thinking about my next post and remembered a few years ago, the Ice Bucket Challenge took the internet by storm, raising donations for ALS. While it did have much viral success in raising funds and awareness, I don't believe it did much to create awareness of what sufferers of ALS experience on a day to day basis.

What I'm proposing to do here is create a set of conditions that help the participant experience a bit of what it feels like to have Idiopathic Intracranial Hypertension.  Some preparation will be necessary in order to simulate certain conditions, unfortunately, a little more than going to the corner store for a few bags of ice, BUT, this challenge won't be shockingly cold or painful. Keep in mind however, it's not possible to experience all of the conditions that we feel on a daily basis. There are many that just can't be simulated such as daily fatigue, nausea, and chronic pain to name a few.

While I wouldn't wish this condition on my worst enemy, sometimes, I find myself wishing someone could understand how I feel and I'm sure there are others out there with IIH who find themselves in the same situation when their friends and family wonder yet again why they can't attend a family function, go to a movie or enjoy a night out celebrating.

Items required:

Glasses - Sunglasses with wraparound features would be best
Tape - Duct, masking, or other non transparent tape
Petroleum Jelly or other thick, clear lotion **CAUTION This will be near your eyes, Please don't use something with perfumes or eye irritants **
Bandana or scarf
Shoe insert or 2 different pairs of shoes
Ear plugs (optional)


Glasses  - I suggested sunglasses here for the dimness factor.  On a daily basis, my world is darker than most.  Many times, I've had family turning off the lights because it's "daytime" and the room for them is bright enough, but once those lights are out, my ability to find my way around is lessened.

Tape the outside of the lenses in a way that impedes most of your vision in at least 1 eye. The second eye can have lesser impairment, but it cannot be fully open. If you have someone in your circle that has IIH, ask them to try and describe the visual impairment they have and replicate that.

The image to the right is a close simulation of the visual area of my right eye, the black area represents optical nerve damage caused by increased intracranial pressure, areas where I no longer have visual perception.  My left eye is not as bad, and has only the lower right quadrant impaired drastically, with a smaller band of impairment along the upper left quadrant.

Using the Petroleum Jelly, smear the inside of your lenses leaving just a little of the central area untouched.  This will help to bring in the blurred feeling experienced in the remaining vision.  I know.. Vaseline will smear your make-up or make your eyes "gunky" ... well.. IIH patients usually don't have the energy or visual dexterity to put on make-up on a daily basis and many of us have issues with our eyes either being dry, tearing excessively or creating more "gunk" than the average person, so one more area to experience what we do on an hourly basis.

Shoes - In some patients because of visual issues, inner ear issues or simply due to the fluid pressures on the brain, our balance is impaired.  The only way I can think to simulate this is to place an insert or 2 inside one shoe, or wear 2 different shoes of slightly different heights.. not enough to create a limp, but enough to make you want to reach out and hold onto a counter for balance, especially if your eyes are closed...

Head - Tie the scarf/bandana tightly around your head - across your forehead, above your ears then around to the lower part of the skull (occipital region) and be sure to tie it tightly but avoid placing the knot over the temples or directly on the occipital bones.   Ironically, this band can actually help headache sufferers, but in our case, give it an extra tug to be a bit uncomfortable. This helps to serve as a reminder of the constant pressure experienced internally by those with IIH. If the pressure of the scarf creates a headache, don't take anything for it, most pain medication will not have any affect on IIH headaches.

Ears - Personally, my hearing has become overly sensitive. I am very intolerant of noise, frequently complaining to family that it's "too noisy", the television is "too loud" etc etc.  One thing I do experience on a regular basis is "swooshing" noises.  If you have ever placed a shell over your ear, you "heard the ocean", technically, what you heard was the sound of the blood flowing inside your head. Many IIH suffers experience this sensation constantly, without the aid of something over our ears due to constriction in the blood flow or excessive spinal fluid circulating around inside our skull.

Others with IIH have experienced a loss of hearing to some degree.  Again, if you have someone with IIH in your immediate circles, ask how their hearing has been affected and find a way to replicate this such as inserting ear plugs, or wearing headphones while playing a repetitive audio file such as the one here.  Keep the volume low, for those with IIH the sound is there, constant and repetitive but coming from inside our head.

Now what?

If you've taken the time to prepare yourself using the suggestions above, go about your day as you normally would. Head to work, keeping in mind your vision is affected and the glasses can't come off, so you need to find an alternate way to get there.  See how long you can make it through the day with the accumulation of difficulties, keeping in mind, those of us with IIH can't take off the shoes, glasses and headband but live with them and many other things on a daily basis.

I hope that many will last at least a couple hours and develop a little more understanding in regards to what their friends and family with IIH experience.  For those who really want to help, donations can be made to Intracranial Hypertension Research Foundation.  

I'd love to hear comments both from those who are brave enough to try this experiment and from those who suffer from IIH who may have additional suggestions of ways to simulate what we live with daily.

May 04, 2016

A year since last hospital stay

Hard to believe that it's been a year since I was last hospitalized for any length of time.  During that last stay, the doctor attempted to tie off my shunt on the left side to reduce the amount of CFS draining from my head.  The attempt missed and the incision was closed off and tubing tied higher up on my neck. This didn't last long, by June I had the tubing reopened once again as my pressure was climbing too quickly.

On the right, I have posted a picture of how the incision looks today.  I still experience some tightness and numbness in the area, but over all I think it has healed better than I originally thought it would. 

May 2015
May 2016

April 22, 2016

April 2016

I haven't been updating much lately due to things being pretty consistent.  Still have daily headaches, which tend to get worse if the weather is cold or if there are changes in the barometric pressures. My vision is stable though I have had some visual issues due to my right eye being dry.

Found this post today and thought it was worth sharing here.

An Update on Idiopathic Intracranial Hypertension

February 17, 2016

2016 Already~!

Wow, I just realized how long it's been since I've added a new post! It's already February 2016!

Not much has happened on the medical front. Things are progressing normally and there haven't been any major changes.  I've continued to have follow up visits with my regular doctors and they are happy with my condition being stable. I did have a bone density scan done recently and according to the technician I am "in the green" meaning there currently are no issues with my bones and my choice to not continue with the bone builder previously was a good one.

Rachel has been continuing her riding lessons, progressing nicely there and has encountered a couple new horses as some of the older ones have been retired.

Rachel on Candy - January 2016
Rachel and Cera - February 2016

I've only done 2 cakes since Rachel's 6th birthday.  My in-laws both celebrated their birthdays in October and we had a family gathering for them.  This was the cake made for them.

In-Laws 70th birthday - October 2015
We had a surprise party for my brother-in-law's 40th. His cake was baked with him in mind.  A chocolate cake made with Guinness beer, glazed with an Irish whiskey glaze made using Jamisons and iced with Baileys Irish Cream buttercream.  The recipe for this cake was labelled "Irish Car bomb" and the cake is actually mixed in a pot before pouring into the pans for baking.  I will admit right here, I'm not that talented when it comes to piping, the image on this cake was produced using a cheater method.  We printed the image on a standard printer and laminated it before placing on the cake.  The image was therefore able to be removed prior to serving the cake. 

February 2016 - Irish car bomb cake.